Parenting comes with a whole host of that can be difficult to deal with. One of the most difficult for so many of us is the isolation we feel. When our are diagnosed, we tend to pour ourselves into the diagnosis. We research, talk to experts, doctors, counselors, therapists, professionals, all in an effort to help our kids have the best life possible.
In all the preparation and planning we do to help our , we fail to prepare ourselves for the journey. We don’t realize just how life-altering with special needs will be. We might find ourselves going through a wide range of including denial, , , , , and . Just hopefully not all at the same time!
Unless you’re one of the lucky few, the isolation can almost become an even bigger battle than the diagnosis.
This post addresses some of the hard realities of being a provider for . I am real, and honest in posts like these because sugar coating the truth isn’t helpful. My goals in writing honestly about the difficulties of parenting is to bring awareness to those on the outside looking in; and, to give comfort to those in the trenches by letting them know they’re not alone.
The hard truths of special needs parenting are no way a reflection of how we feel about our kids. We love our and would move mountains for them. They have brought so many blessings to our lives as well. But those blessings do not mean we can’t talk about the hard things too. This post should not be taken as a complaining mom, but rather as a mom who is just being real, open, and honest.
The Early Years
When our are still toddlers, the doesn’t really set it yet. Play dates are still relatively easy because our are still at an age where the mommies and the babies are all on the floor together participating. Depending on the diagnosis our have, there might not be a huge developmental gap between our kids and our friend’s kids.
During this time we still have our friendships and lives. We can still visit each other’s houses without much thought for accommodating our ‘s needs. Sitting on the floor chatting with other moms while our play together with a little guidance and minimal is still a reality.
The early signs of isolation do start to present themselves during the first few years, but we usually don’t see it. We spend a considerable amount of time traveling for doctors, specialists, throwing ourselves into interventions and what we can. We can’t go on as many outings, meet at the park as often, or join in on a walk with our friends in the because our schedules revolve around all of these appointments.
When the Isolation Escalates
Then it happens. Our kids start getting older, but they’re not meeting , physical, , and mental milestones. Not only that, but the gap between our special needs ‘s abilities and that of their typically deveoping peers grows. What was once a small dip we could easily step over has suddenly become as wide as the grand canyon.
Suddenly, we can’t do playdates. On the rare occasion we’re still invited for a play date we find ourselves facing hard choices. While other kids are now free to run and play, our isn’t capable. For special needs moms, this means we have to choose. We stay with our and help them participate with the other kids as much as possible; or, we sit and socialize with the other moms (making our sit with us).
No one wins in this scenario. sets in one way or the other. Either we as moms miss out on a conversation with other moms, or our misses out on being with her peers. This, of course, is happening at a time when these relationships are crucial to us. The worst part is, those on the outside of special needs parenting don’t see it thrust upon us.
I can’t tell you how many times I have chosen to be by Ladybug’s side, excluding myself from the circle of moms and no one stopped to think of coming alongside me or joining us. No one realizes that if my kids are with me, I can’t participate. While it’s easy to say that it’s only for an hour or two. The toll of this escalates when it happens every. single. time.
Isolated at Home
Of course, the big part of isolation comes from the fact that it takes a LOT of work go to places with our . Most people assume that this gig gets easier with time , but that simply isn’t true. While we have accepted their diagnosis and our new reality, their level of increases with time. Meaning many things actually become more difficult. with special needs and coming to this realization naturally leads to even more , , , and .
So many places are not as accessible as the non-disabled would like to believe. Adequate bathroom facilities for are becoming a bigger problem as our grow. The ability to contain an autistic meltdown gets much more difficult as their bodies get bigger, stronger, and more aggressive. We need to consider things like wheelchair accessibility, and the amount of sensory stimulation our kids will be exposed to before going anywhere.
Many times it’s just easier to stay home.
The Isolation is a Natural Progression
The worst part of the isolation reality face is that it’s no one’s fault. There is a natural progression to it. As our kids get older we don’t participate in the same activities. While our lives revolve around doctors, procedures, and therapies, everyone else is pouring their time into sports practice, dance lessons, gymnastics, boy/girl scouts and every other “normal” activity kids participate in.
Our paths no longer cross. We no longer relate to each other on an level. It’s hard and it takes an effort to be friends with a . I don’t say that to sound harsh, but it’s the truth. It is much easier to maintain friendships with other moms you can relate to. It’s a fact. Yes, it’s a sad fact, but it’s still a fact.
Babysitters are Hard to Come By
This is a fact that many don’t even think of. When we look for a babysitter we need to consider things like the person’s ability to lift our who is completely dependent on us for transfers. Are they comfortable with the fact that it’s possible our will have a seizure? Can these recognize when our is overstimulated and about to have a meltdown if they don’t intervene?
I’ll be honest, most people are freaked out by the idea of babysitting our . I get it, really. I mean this is like foreign territory if it’s not your everyday life. It’s intimidating, I acknowledge that. I’m not placing blame or trying to guilt anyone who would be uncomfortable babysitting for ,, , or other . Trust me, as a parent I get it, it’s hard. I’m simply stating that this is another hard reality keeping us isolated from the outside world.
We Spend All Our Money on Medical Needs
Our lives are filled with medical appointments, procedures, equipment, , home modifications, therapies, coordination, adaptive devices, time missed at work (assuming we even CAN work outside of taking of our ).
Needless to say, we simply can’t go out to eat, grab drinks, or buy tickets to events. When the group goes out, we need to stay home. What was once just a normal Friday night activity, is now a luxury.
The worst part of this reality is that when it comes to kids with , this reality doesn’t end. Our kids will always have these expenses.
The worst part of this reality is that when it comes to #kidswithdisabilities, this reality doesn't end. #specialneedsmom Share on X
We Get In Our Own Way
Sometimes the isolation of raising comes from ourselves too. There are times we simply don’t have the energy. There are many nights of due to hyperactivity, manic episodes, reactions to medication, daylight savings changes, weather, etc.
I have a saying: If I’m awake, I’m tired. This gig is exhausting, and it never lets up. So, on the rare occasion, we have the chance to get a little and go out with friends, we’re probably too tired to really enjoy it.
Then, of course, there is the energy it takes. Like I mentioned above, it’s hard for us to relate to others. Conversations are difficult. They’re difficult because it’s hard to talk about our situation as . If we are honest and share our struggles it’s perceived as if we’re complaining and we don’t love our kids (which is why I added the disclosure to the top of this post). So, we feel the need to put on this mask and pretend that everything is all sunshine and rainbows (which is probably also not great for our ). Why? Because the last thing we want is further isolation because of the negative perceptions that tend to come when we are honest and vulnerable.
Sometimes it feels like I live frozen in time. I can look around and see the world moving around me. I see other families growing, laughing, and enjoying life while we’re standing still. That’s what isolation feels like.
What Can We Do?
Isolation is real, I know I’m not the only who struggles with this. If you’re a special needs parent like me, try to find time for self care – maybe even if that option is available to you. Make sure you’re working on your marriage . Get professional help if the isolation is consuming you and bringing on . Of course, remember all the blessings your bring to your life.
If you’re not a special needs mom, I simply ask that you don’t forget about us. I know it’s easy because we don’t run into each other at the kid’s activities; but, we’re still here. We need your friendship now more than ever.
Great Post. Beautiful pictures. I’ve written on self-care and joining a community as well. We special needs Moms need each other.
Yes we do! Thanks Charlene
My sister who has an Autistic son, has a group of friends that are also parents of children with special needs. They have become all friends over the years through special olympics and social skills groups. They are there for each other in so many ways. Through thick and thin, good or bad. Each birthday is also celebrated together. The kids are all older now, and all enjoy each other’s company.
I’m so happy for her to have friends who understand!
I dont have anybody
So great to hear when like communities congregate together and help each other. BRILL!!
That is good that your sister has a group of special needs mom friends. I do too. However, even fellow special needs moms aren’t always the most understanding. My child is higher functioning than most and I get quite a bit of resentment and disbelief. It is frustrating. Also there are times when I was going out of my mind with the way I was treated by certain so-called professionals, and most of my fellow special needs parents got annoyed instead of offering true support and empathy. I was truly shocked, but ok now wiser. Just because I think that we have something in common doesn’t mean that it’s enough.
But my point is that it IS a lonely and isolating life, even if you do have a network of other special needs parents.
That is an important point. In theory, just getting together with other parents with similar challenges seems like a good idea. But it has never worked out well for me. I am still isolated and I am 62!
It can be hard to put into practice, sometimes the online community can help
I am with Diane on this one,, I have tried to establish friendships with other parents in the same boat as I am and it didn’t work for me either., I am a 56 yr. old with a 35yr old severely retarded and wheelchair bound non verbal child . I wish I could contact Diane who also left a comment here because we do have plenty in common and I sure can use a friend also…
You wrote my thoughts, you expressed my negative feelings. No one understands our feelings, socializing is not the solution to our feelings it make worse, we will keep comparing others to our kids, and this is very sad
My son has autism and intellectual disability. He doesn’t get along well with other people with autism. Maybe their sSensory needs don’t mesh? I don’t know. He has a couple of friends with Down Syndrome that he dearly loved to be with as a young child. In high school, he developed several sensory triggers that drive him crazy, things like someone else coughing or having a drink of water. As you can imagine, he is very isolated now. Still trying to find solutions that we can afford…….
I’m with diane , sandra and Anna
It’s easier said than done
To top it off I don’t have any family in this country
I never thought that my son’s getting older ( he is 22) would isolate us more and more .
So hard to find help when they are no young .
Dealing with his behaviors and ocd is overwhelming for us parents imagine to strangers .
Praying for a miracle 🙏🏼
y Son and DIL have this with their Autistic 11 yr. old Son.
This is what we did. In St Louis, where my kids grew up, a group called T.A.S.K. was started by Deb Freund. She was a spec ed gym teacher. It stands for Team Actiitues for Special Kids. Through that organization, my kids made lifelong friends and so did the parents. It needs to be replicated nationwide.
I’m a 52 year old man with no kids. A cousin of mine has a special needs child and sent me this link. I sat here reading until the end before I realized I had my hand over my mouth. Perhaps it is best I keep it there and just listen when the Mito kid mom at my church wants to talk about cleaning out feeding tubes.
<3 <3 <3
I’m a mom of a special needs wonderful young man, yet it’s so heartbreaking at the thought of being alone for the rest of my life ( only 43), relationship are impossible, even keeping friends. As mentioned in article it almost feels like where like a second thought to people, it comes with a very heavy dedication and alot of responsibility which most see as to much to take on. A little of kindness and patience goes a long way.
Good morning. I did read your entire article (usually just scan) because finally I can relate to someone story in this. I am a caregiver father, and found your article searching for other fathers experiences wich strangely I do not find (are there other caregiver fathers out there? Are they somewhat successful? Or just don’t want to be exposed?). I left my job to take care and raise my boy as long as 3 years ago, my wife works. A few weeks ago I did realize or asume this will be a emotional lonely road. I mean no one wants to know what it need to be known even if is family. Even the part of being difficult to tell this story not sounding as whine us hard. I am happy and some kind of sad my story could be a little standard for many people. Anyway. Thanks for your article from Chile 🇨🇱
There are many care giving fathers out there (I’ve met a bunch), but everyone’s situation is different. My wife and I are both working right now because the Grandparents are able to care for our girl. We may eventually have to choose who will work. My other family is either not in the country or simply unwilling to actually help (although they don’t want to be perceived that way.) My life is not what I envisioned or would have chosen, but I follow Christ and that has different costs for me. I don’t like discussing it because it does not help the situation, and I can’t fix the problem. I don’t know anyone on the board, but I just wanted to say the Dad’s are not alone.
Thank you, Charlene! I have a 23-year old son with autism. He’s non-verbal and get have intense behaviors. You’re right…it doesn’t get easier. Thank you for your words ❤️
My son has Cerebral Palsy, Epilepsy and complex medical needs. We applied to PUNS through school social worker and we were eligible for the home care waiver which gives us money for respite. There are some great special needs Carers out there. I would highly recommend doing this.
This is such a great article, I’m a special needs mom and everything is true. Thanks
Yes we do!!!
Beautiful you captured every single moment. Isolation is very really and raising a child with special needs can be exhausting but it is also a blessing in disguise. I would like to thank you for sharing this for others to see what we go through..
my son is 30 and not very good socially,never had a relationship.It worries me when we not around anymore,he lives in a flat and comes over every weekend.he got carers every day(he got asperges)
My brother was mentally handicapped and lived to the age of 26. I grew up with my brother, mom and my often absent dad. We lived in extreme isolation and I have never managed to learn ample social skills. I work online as a real job that requires interaction with people terrifies me. I was able to keep a company job for 3 years and I somehow coped. I have no friends, couldn’t keep my relationships. I would often feel intimidated by the social skills of normal people and even though I think my friends like me for me, I would pull away because I feel disconnected from them. I fear I might commit suicide when I lose my mom who has been the strongest person I’ve ever known and who is still my best friend. Any ideas on how I can improve my situation? My country has limited mental health resources due to corruption that has crippled all our once flourishing institutions. It feels so hopeless to even try because of how old I am already.
If at all possible seek professional help. I’m not sure which country you are in, but prayer and professional help are the only things I can really think of. If you don’t have access to professional help, maybe you can find support groups via social media like Facebook?
I’m so sorry you feel this way, I understand from the aspect of being a mom of a little girl with special needs, my son decided last year to live with his father,..but he is quite opposite of you…his social skills thrived and as I tried in everyway to make sure he didn’t miss out on anything..I think it still wasn’t enough so he ran away and seems to be thriving. I am sorry that life was hard for you and it has been tough socially. I am currently pretty isolated and will be working from home, I don’t do well conversating anymore with anyone except for doctors and social workers, but I just want you to know you are not alone, You sound like a very empathetic person, and I hope you can find a way to let your personality shine. If you ever need to communicate with someone, I can listen, my name is Lynda and my email is [email protected]
Oh yes! The isolation for me was terrible. My son did not care to be around other people at all. He just got bigger and bigger and more able to pull me out of where ever we were at. I remember years ago just riding around in the car with him (he was still in diapers til age 11, I think he was about 7 at this time) it was Thanksgiving day. He did not want to be at my brother in laws house, We quickly ate and then I took him for a ride. No one missed us, or called to see if we were ok, and I felt so alone, I just sat and cried after I managed to change his diaper in the car in the back seat. Everyone else was watching football or talking . My son is non verbal. He now lives in a wonderful facility , he is 22 now. By the grace of God he got in. No other explanation. We love Brother James Court and they have brought him so far and helped us and him immensely!
We sure do..
Thanks gal.
I’ve been a special needs Mom for 29 years. I have a loving and supportive group of special Moms. My son died unexpectedly, during a time that he and we were looking forward to him moving to a group home.
My struggle now is to figure out what I’m here for, who I am now, that I’m not my son’s advocate/casemanager/caregiver, etc.
so sorry for your loss Chris. I hope you’re able to find peace and find your new role in life.
Chris,
So sorry to hear about the loss of your son! Dealing with special needs myself for almost 16 years, I can only imagine the home that is there for you now.
With your vast experience advocating and helping your son, I hope you’re able to help other families that are near you. The special needs community needs seasoned advocates to help parents understand how to best advocate and help their children. Blessings to you!
So sorry for your loss, being a mum for nearly 18 yeaqrs to a wonderful girly with special needs I couldnt imagine what youve been through. sending huge love to you and those dearest to you. also wondering how yoiu are doing as I see its been a while. Wishing you the best always 🙂
This!! 😭 💕🙏
I’m quoting this blog and can’t find Sarah’s last name for my reference page. Do you happen to know it? Thank you if so,
Sure, it’s Bennion. Thanks for helping others and for spreading the word!
Having a special needs kid in the nineties, was a very fearful experience. There was minimal support and there was not a lot of information out there.We often lived in fear of social services taking our child, which did happen to lots of my counterparts from that time.My child is getting close to thirty and he has build his own world.Yet, you never are to far away from caring for them and what life throws at there experiences.It is a life sentence but, it is truly an honor to have these kids.
Why did they take the children? What was the problem?
I have had to throw myself out there to be seen and heard. After 15 years of self-sacrifice the community is finally responding. They are beyond awareness and well into acceptance and some reciprocation. But I have had to make myself the spectacle. I volunteer a LOT.
I admire you… thank you for doing that. You’re making a great difference to all the family you help. Keep it it up.
Helen E
Bayside New York’
I have 2 children on the autism spectrum disorder with adhd and seizures. It is not easy to be isolated as a parent and my children even dont have other children to play with which is even harder on them.
Thank you for this.. I am a special needs mom n this hits home for me.. just remember at the end of the day that God placed that child or children with you for a reason.. and you are strong.
Thanks Cassie, you too!
Amen! From a Father of a 15yo daughter on her own rollercoaster. My wife works and I’m as a service animal with a big mouth, a credit card, and a car, as Goofy, driving. I wouldn’t change it for the world, but I sure as heck would have packed differently! It’s harder when it’s mom’s of A-typical kids, as if being the only father wasn’t confusing enough.
My son Daniel is thirty-one years old and is showing more social skills even though he cannot walk on his own or feed himself. But he enjoys people more and also his food which he used to have difficulty with chewing and swallowing when he was quite young.
I have a daughter who is special needs! She is almost 17 years old. I love her so much. She has cerebral palsy and is non verbal! I think the hardest part of this journey is the feelings of isolation of being alone where family abandons you knowing how much help you need! I got divorced 5 years ago so now it’s shared custody of my Hannah! It doesn’t get easier because now that you have time to myself I constantly think of her and finding employment is difficult with my availability! It’s the hardest thing I’ve ever had to do. I wish I had family support! Makes me feel like no one cares about us which makes me even more sad and even more depressed! God help Us !
Hi Michelle, thanks so much for sharing and you bring up some very true (and difficult) topics on raising these extraordinary children. Not only the reality and challenges of isolation, but the employment issues and needed flexibility to handle all the comes with caring for these children. I can only imagine the added pressures of being a single parent and having to be 100% ON or having that stressful time to yourself when you’re not caring for her. 17yrs is a long time, and when the road looks difficult ahead, just look at how far you’ve already come. You can and have done very hard things. One step at a time, that’s an impressive path. I know God loves you and is aware of you, and I do hope your family finds a way to become part of your life and offer some measure of support. Thanks again for your notes, it’s given me more to think about as we try to create a place of comfort and support here!
Well written!
Being a parent of children with special needs is so much more than what many people understand!
I would like to nominate you for the Liebster Award! If you choose to accept please go to my Author – Elizabeth Eckert facebook page and send me a message. I will then send you a link for the instructions. Congrats and keep writing!
I’m glad you enjoyed this post Elizabeth! can you fill me on on what the Liebster Award is?
I don’t know how to express at 63 with two ( twin ) 28 here’s how I say how Horrid the isolation Really is for what’s left of my family., twins and my Horrendous sadness.
Life still goes on my husband is in the process of being diagnosed with a deadly cancer. My son Is on the worst medications and restrictive setting. My daughter is getting sicker and the amount of anti-seizure medications. It takes me back to how hard I worked for play dates and just survival Only for the pain of watching their slow but furious downward decline. My heart will not heal this stage of grief.
You speak a truth even within the special needs community people aren’t able to digest.
The struggle to connect with others that understand becomes impossible – thank you for being brave enough to share. My son has lost himself on horrible meds that created aggression and loss of communication to add to the isolation. Finally after hiring civil rights attorneys to push the system to address the medication issue he is now off the troubling pharmaceutical, but he lost his entire adolescence to a darkness induced by it. I’ve struggled repeatedly to survive my own aggressive lymphoma. I hear you, I see you. I hold your grief. Know your not slone. I’m sending love and healing energy to you and your family.
Jessica, I hear you, I see you. I hold your grief. Know your not alone. I’m sending love and healing energy to you and your family.
Almost 4 years later as I read your comment at 3a.m it resonates with me so strongly. As a divorced mother of 5 who is also battling incurable lymphoma I don’t think I honestly realized just how dramatic my life would change once I had my now 10yr old twins at 31. Having had 2 Atypical children beforehand in my mid 20’s with my then husband we were just gearing up to go from a family of 4 to 6. And I know this sounds crazy but from the first day he was born I could tell that there was something different about him. His twin sister isn’t autistic and is actually gifted and goes to a school for gifted children. Such a crazy paradox. But it just drives home everyday how different there lives will be and already are and it makes me sad and nervous for him. Now I’m just trying to cope with how to continue on in a positive light knowing that there’s still so much work to be done for him. Thank you for sharing and letting others know they’re not alone, it really means a lot.
Love this! Thank you so much for putting all of this out there and speaking to us mamas. I’m bookmarking your site right now 🙂
you’re so welcome Jessica!
Amy,
Where could I find a support group in my area, or even online? I know it’s a big question, but I have an 18 yr old & need some connections.
Jennifer.
Hi Jennifer, that’s a tricky one. I wish there was a one size fits all answer to your question. I would start by asking your child’s therapists. Or, check with your child’s hospital, they often have social services and might be able to give you ideas of groups or even organizations that can point you in the right direction. If your child has a case worker they might have some ideas. as far as online communities, it’s a lot of searching. Again you can check with your hospital, ours has one specific to kids with cerebral palsy. I hope you’re able to find one that offers the support you need!
This is very true. I feel very alone. I have five children, two have special needs, one of which is ASD. He can’t go anywhere without us. We can’t leave him with family or a babysitter. The one person we felt safe staying with him moved away. My friends get together and I see the photos on social media and it’s hard not to cry. As he’s gotten older it’s only gotten harder as he now struggles with depression and wonders why his own life is so hard.
The only people I can talk to about this are other special needs moms. Other people mean well but they offer pat answers and “solutions” that simply aren’t possible.
Our marriage is very strong. I’m leaning to see my family as my circle of friends. My oldest is a teenager now and likes many things that I do. So we are moving forward.
Church is hardest of all, though, and I think that’s really sad. I am always a volunteer in my ASD child’s age group because I have to be there anyway. But I do think the churches need to step up.
I’m so sorry your safe person moved away! Praying someone else comes along that can fill that void for you. I agree sometimes church is the hardest. I’m happy you have a strong marriage and family support system, I hope you’re able to find ways to get some respite too!
I agree with the comments about churches. Even if they do have a program for kids with disabilities, it may not be a good fit for my child. Just like special education – one size doesn’t fit all. I give churches kudos for trying, though. I’m hoping to find respite for one day during the weekend so I can go to church by myself. Worrying about how my son is doing in the special needs group keeps me from focusing on the service. I have watched online live-streaming services or looked up past services recorded on video. It helps but it’s not the same as being at church.
I feel you when you talk about the church, the last time I went to church (where there is no provision for special need) my 10 year old went to Sunday school with my 5 year old ASD and he was instructed to return him to the mother in the main service. We had to leave, Since that day I only attend mid-week fellowship for an hour to fill my spiritual urge gap. I think I will try to accompany him to the church classes one day. In my country only the parents of special need seem to understand these conditions (there is so much ignorance), some say the child is demon possessed and needs just prayers others think the children are undisciplined and brought up badly. etc its such a trauma.
I read all these stories and they sound like mine. I’m a 59 yr old, with a 37 yr old mentally and physically disabled daughter. I’m so lonely sometimes all I can do is cry. I’ve tried online dating, but soon as a man finds out you’re the caregiver for a disabled adult, they don’t want to be in your life. I’m not going to put my daughter in a group home, especially to keep a man.
I just need to talk to someone who understands my life. Sometimes depression is overwhelming and I don’t know what to do. I need help.
I hope your community will soon have a church that offers a special needs ministry with well trained volunteers who “get it”. Our church in Rockford, Illinois ,City First Church, offers Champions Club that is designed to engage and teach special needs children while parents get to be a part of the service.
Pastor Joel Olsteen’s church in Texas started the first Champions Club and now other churches may obtain information on starting a special needs ministry in their church from them ( Lakewood Church)Special needs families are one of the most neglected people groups around and need the love and care the church can provide.
I agree, church is the worst.
I agree with you that your Church should be there for you. To me that is part of the the Churches’ remit. My son and his family are very lucky as when their first child who has Down Syndrome was Christened the Minister had him taken up and down the Aisle to make shure that all the Church members could see he was a child with special needs. It has had the desired affect. Unfortunately this Minister has died at a young age when both his children were under 10 years old. He also made sure that my son’s family were being included.
Reading all the stories on here I think my son and his family are very lucky as they do have friends both with Children who have Special Needs and also families who do not. They also have parents who regularly have their children stay with them giving them time for themselves. In fact I think that grandparents if possible should help not only with children with special needs but with heir grandchildren as a whole. I would be lost without being involved with my grandchildren so am at a loss to understand grandparents who do not want to be involved. I know if you are disabled and the child with special needs needs to be lifted it is not always possible but both my husband and myself are disabled but along with my son and daughter in law we have been able to teach my grandson the things he has to help with and to work with us.
I pray that parents will be given the strength to cope with whatever situation you find yourself in.
My daughter was diagnosed Feb 1st of 2017 at age 17 months with a rare genetic disorder (Phelan Mcdermid Syndrome) and your article has been wonderful with expressing the feelings I’ve had lately between friends and even family members and the distance beginning. Beautifully written and powerful. Sent to all my friends and family to read to help them gain insight into our new world now.
I’m glad it was helpful to you Laura and hope that those you sent it to will read to have a better understanding of where you’re coming from.
Amy great article! I am not a Special needs parent…..but was a mildly handicapped child with crutches and didn’t walk until I was 3 years old. My mom carried me till I got crutches. At age nine, I donated my crutches to a rehabilitation facility for children that I attended for therapy while in 4th and 5 th grade. Later, through a Summer job program; at 14 I went to work there at the rehab as a recreational side for those sweet kids! Best job I ever had….miss it!!!! Now I am a disabled adult with 2 teens and one in college. Have had diabetes for 14 years, and my feet hurt along with cerebral palsy, makes it difficult to get around the last couple of years. Along with not driving. My husband and family help me as much as they can but have to work and attend school. So some times I get left out because I can’t do as much as they can….I try, though! And they always look out for me and include me in as many activities as possible….but l don’t want to hold them back,watching out for me so some times I stay and wait for them to finish, and they can enjoy it!
The isolation thing is so real. My special needs son is 14, and I just feel like a hermit. Everything seems so hard, so even thinking about an outing gets overwhelming. We are finally in the market for a van (the reason I found your site), so perhaps that will help. We also live 30 minutes out of town, but I just thought I was a big party pooper for feeling so isolated and not up for planning! Thanks for the reassurance that I’m not alone.
no you’re not alone, it’s exhausting thinking of all the work involved in going out!
I’ve been dreaming of getting one of those small panel vans(they are the size of mini-vans but for work) and transforming the cargo area into a living room, like on those Tiny House shows. My son will go with me to the store but refuses to come inside. So, this would be a win-win. He could watch movies and have snacks in comfort while I grocery shop!.
This brought back memories of our sweet Elizabeth. she was a microphcephic, profoundly metally challenged and had 30-40 convulsions a day. We were consumed with her care and had no social life. It was impossible to get a babysitter because everyone was terrified of her. They were afraid she would die while they were caring for her. She was beautiful with a rosebud mouth. I had awaited her birth for so long. I adored babies and of course I adored her too. She died a half hour before our healthy son Lorne was born. It was a very difficult time for us. We were so in love with her. I still mourn her death today after almost 50 years. The comments to us were so bizzar. People just didn’t know what to say, nobody meant to hurt us. I have a very special place in my heart for children with disabilities. I love them. There is a very special guy with Down’s Syndrome named Sammy and I love his family and him very much. I feel frustrated that I had a stroke and have almost no sense of balance. I take up a lot of my sweet husband’s time taking care of me. He is so good to me.
It is all very well saying that us parents of special needs children need to stick together and we tend too, but when your child doesn’t want to hang out with other special needs children all the time because she wants to be like her peers, it is not easy. My daughter is now 14 with Downs syndrome and although high functioning in a lot of areas, there are other times, when she needs you nearby and she is still a few years off from having the same freedoms as her peers, so she now seldom invited to birthday parties and other events. The other kids aren’t deliberately mean to her but for them it is easier not to include her in their out of school plans as they either feel like they will have to babysit her, don’t know what to do if she suddenly shuts down or is scared of a barking dog as it hurts her ears, or they don’t want her to feel left out at the party or event itself. I also don’t feel comfortable just dropping her off with parents i don’t know and the parents are afraid of that too, so I end up having to stay which is hard when you have nothing in common with the parents at all and the kids want their independence and as less adults as possible hanging around. Although she is included in dance and gymnastics, other kids don’t always understand what she is saying so they walk away and she often ends up with younger kids for her ability instead of being with her age group which is what she wants. It is hard as a parent to watch and so when she just wants to stay home, sometimes it is easier to just say ok. If we do go to a party with our friends, she usually comes with us and does her own thing, but it isn’t much fun for her as there usually isn’t anyone else her age to hang out with. Going to work gets hard as you need to be able to leave when the school calls for whatever reason, finding care isn’t easy, she can’t stay at home alone and doesn’t want to anyway, many jobs pay less than what you pay for care so what is the point, and many of the jobs are shifts so then you need care. To add to the isolation of not having work peers to associate with, most people you know are working during the day, and the spouse that is working is away all day and will stop off to see a buddy and simply does not realise how it is for you. Volunteering helps a bit, but often you feel like you should be earning actual money. Saying that, I too prefer to accept my own child and wouldn’t change her and her bubbly personality for another child, and so I accept the isolation that comes with it.
What a blessing this article has been to read..I’m a mom of twins, one has autism…our days are filled… with daily struggles, adaptation to daily skills, hugs and moments of joy…I can’t even begin to tell you how accurate this article has become OUR reality…I hope other read this and realize this is someone’s reality…the gap does get bigger, children start to notice they are different….wonder why they are never invited to that birthday party or play date….we become our child’s best friend…day by day, minute by minute….
I just came across this article on a post from someone I know. I am a father of a child with anxiety, adhd and mood disorder. The isolation continues to hit our family, it is not just the moms, it is also the fathers and siblings of they incredible children. I see everyday the potential my daughter has and how her issues stop this potential from being accomplished and it pains me. I also see how not pursuing things continues to alienate her from her peers. Also how her behavior has pushed her away from her peer, during class the outbursts and crying in makes her an easy target. She has not been invited to a birthday party in over 2 years now. She talks about girls at school like they are friends, but unfortunately I know they really are not. She is ignored and teased, some tease just to get her to react. There are times when she notices that she is left out, and those are the times that my heart completely breaks. At a school event I found her sitting alone crying, she said she has no friends and knows that the other girls do not like her. No one was coming up to her to say hello. And at the same time she finds it difficult to go and initiate the talking. She as just recently joined a new dance school and has made some great new friends. However, sometimes she does not understand how friendships work and has trouble chooses the girls that will be her true friends. The girls are also younger than her and the . She 11 and heading into middle school next year, which does make us nervous. I can not imagine the life that you explained fully with a child with special needs greater than that of my daughter, however I can relate to the isolation and feelings. Thank you for this article.
Oh, the babysitter! I had to explain to an out of town family member why I didn’t get to see our elderly relative very often at her nursing home. I had no babysitter. DS has sensory issues that preclude him from visiting a nursing home. The family member blithely dismissed my concerns with “you need to get more creative about finding a babysitter.” Hmm…. I’ve found that there isn’t much funding and there aren’t many caregivers. Or if you find one, you can’t find the other at the same time. But I’ll get right on that! Clearly, I just need more creativity. Or maybe the out of town family member could move back and babysit!
Boy am I sobbing…. I feel you.
Im walking that road too. I feel so isolated most of the time… and sadly most lonely when I’m around people.
I feel so isolated within the Special needs community too these days… as I met few people who have a child at the extreme level as mine… and heck they are all so busy surviving that we can’t really connect any way.
Moving from the Special needs world to the Palliative one… is sooooo hard. I relate to families on the palliative journey… I relate too well…. and frankly I don’t think my heart can handle building a relationship with another little people waiting to gain their wings….
Which sometimes I feel…. it leaves me in one very lonely no mans land…..
Hi Erin,
I understand what you mean with the palliative care.
A lot of our children will not live long lives which is often just not mentioned (another coping mechanism!
Sending you lots of love.
Hello, reading all the comments I can relate to! I am the mom of autistic, developmentally disabled man. Moms go thru stages of life with their sons and daughters and it hard to keep up with families whose children have grown and have grandchildren. I AM STILL THE MOM OF A 10 year old……………a very needy boy who I have tried to put on the adult track but life of a son disabled at 51 years old does not work that way! So the bottom line all you gals have written does not change much with age………………..accept I am a widow now and handling life as an 80 year old……………………………….35 year old mom!
Thank you for posting
Important to hear that others feel alone to
Thank you for this post. I have a special needs son that is almost 9 and most all of this rings true. He is so loved and adores by neighbors and church friends of mine but not really any his own age. I think one of the ways I feel most isolated is birthday parties. He doesn’t even get invited. I am not sure if he notices but I sure do. I miss those celebrations of other kiddos.
Today I turned 60. I spent the day like any other Sunday. Feeling invisible. Tomorrow I will go to work and spend the day working with special needs kiddos and help others who need a helping hand in life. Everyone thinks I am so strong and independent. I wasn’t given a choice… a single parent of a 35 year-old multiply handicapped child. Everyone is so busy with their “lives” …. husbands, children, weddings, grandchildren ….. I don’t “fit” in to their world so I’m not invited to be a part of it. Always on the outside looking in.
So today, i got happy birthday messages on Facebook but no one could bother to spend time with me on my birthday…. so tonight, I’m taking myself to a nice dinner to celebrate this milestone birthday by myself.
Isolated and Invisible.
Stacey – I read your comment and it was so heartbreaking. I turned off my birthday on facebook for this very reason. I don’t make a big deal about my birthday – I just treat it as any other day. I just don’t get false birthday wishes anymore. It takes sooo much stress out of it. I understand what you’re saying only too well. As the kids get older they start to realise that their sibling can be edited out of their lives where it suits them. Which also means mum gets edited out. I’m just starting to get that invisible feeling. <> for you. I wish you strength.
I completely understand and am the feel the same, my son has seemed to edit myself and his little sister out of his life. I can’t help but feel his spuratic messages are just out of guilt. It’s hard for me to say to him, everything is ok, we are great, it’s ok, I know you’re busy with sports and being a teenager, don’t worry, visit one day when you’re not busy, it’s really ok, I know its not very exciting here for a teenager. I don’t want empty conversations, or guilt visits, my little girl is too perceptive for that. We are quite isolated, myself and little Hudson, she is 4 born with an extreme form of epilepsy, severe mental delays, cerebral palsy, and cortical blindness. However, she’s so sweet, beautiful, and has become quite vocal and loud, and we laugh and we squeal together and roll on the floor and get what we need to get done and once in a blue moon I will look for a page like this and the stories will break my heart and make me cry. My prayers and best wishes to everyone as we continue this special journey
Lynda
Hi Stacey1
I’m 68 and my son is now 36, I used to work with other special needs children while my son attended school.
I totally relate to the Birthday thing and have often taken myself out to a nice coffee shop for lunch on my own and sometimes with my son.
I hope you had a nice birthday and a lovely meal.
Regards, Pam
From across the ditch!
Stacy, you sound so brave and admirable and self sufficient. If I lived near you I would make you a nice birthday dinner! I really admire your strength. – Portia
This is a fantastic article. My twins are 4 now, but I can already see the gap widening. Luckily, we have a huge autism community in our area. That helps a lot. ❤❤❤
I feel lucky that my son’s autism is minimal but I still have to worry about tantrums that are not age appropriate. Plus he really is a loose cannon when engaged in conversation. He is “normal” enough to be full inclusion but that sometimes makes it worse. He does not have something that can easily be seen on the outside and the gavel of judgement is constantly falling on us. He is just considered rude and snobby.
Very well done
Thank you for sharing! So many of us who have lived through this must speak out to help other parents of special needs children! My book “Raising James” addresses many of these same issues. Hopefully, social workers, psychologists, doctors, and the general public will learn to have more empathy and understanding through our efforts!
I am raising my disabled 4 year old grandson. The loniness is sometimes unbearable. I love my grandson so much but, the invites stopped coming. The calls quit coming. He is on oxygen and in a wheelchair so getting out to even go to the store is hard. Just reading this and seeing other people feel the same isolation as I feel makes it a little easier… thank you!
I read special needs and I think physical disability, but there’s a whole ‘nother realm of disability. My son has schizophrenia. The isolation still runs deep and he has no friends. He can’t be left alone and he’s 15. I hope and pray some day that more parents of children with mental illnesses get more publicity. We still have the IEP’s and 504’s to deal with and whole host of other things. Sorry this is all over the place. Thank you for posting this.
Yes, many times it is easier to stay home. Home has become our sanctuary.
This is so true!
My ex was disabled a couple of years into our marriage. We lost so many friends.
Then 5 years later she got pneumonia and was on life support. She survived but was on oxygen at the age of 32. We lost most of the rest.
She fought to get better. We adopted. Being much older, having physical challenges, and adopting, my ex did not fit in with the mom’s group. Not really the fitting in, but excluded.
Our son had all sorts of medical issues as a baby and toddler, and mental illness started to be detectable at 3. It is a hard lonely path to walk. He’s 9 now, but in reality he’s 7.
I cut off my family because they were more hurtful than helpful.
The ironic thing is though we’re finalizing our divorce, the closest person I have in my life is my ex.
I was so very pleased to see a link to this article and read it. And all the replies! So many people who just “get” it. So many people forget that our children like to be part of things and so do we! My son turned 20 this year. Becoming a parent of an adult disabled child has been very eye opening. Drs appointments start to finalise as they’re adults now – and there’s no need to monitor anything. Just keep going with what we’re doing, unless a problem crops up. We were discharged from all our Dr clinics. We only see our GP now. School has finished and there are activities for him to attend – but I can only afford so much with my package. As he needs a 1-1 carer – it eats into what money is available. So for 90% of the time he’s home – with me. And there’s not a lot for us to do. So we’re sort of sitting within 4 walls. I’m exhausted most of the time. Why? I don’t know. It’s not like we do a lot. I try get us out but my fitness is low, my sleep is pretty rubbish, and I’m getting older as well. I do have a couple of friends who remember to visit or ask me to go see them. They treat my son like any other person but understand he’s different as well. After reading this article – it has made me think of them and truly appreciate them all the more.
Next to no family around, few friends – but I refuse to let life get me down. If I don’t feel like going out – then darn it I won’t. Finances , energy and my childs behaviours when out – all restrict me from going places. But I still make the effort. But I refuse to be hard on myself if we don’t go out. Going out is hard.
The interesting thing about us parents of older kiddos – is the way we go through “Empty Nest Syndrome”. If we have other kids – we watch them grow and progress and fly the nest. Some create their own families! So we have that empty nest – but not quite. We still have that one chick that needs us. So while our friends are thinking about retiring, sea changes or travel, we are thinking about what our life looks like for the future with half an empty nest. In my case I had to reeducate myself as my chicks getting older meant a loss of monetary assistance. So I’ve had to build a business from home – which isn’t easy with no energy and a bit of a fear of diving in to the work force after years of isolation. The ride keeps going, it just changes. We say goodbye to our other chicks and miss them – but we still have one – so why the sad face….you still have a kid at home! It’s a very very tricky road to travel this one.
Thank you for opening a discussion, it may not solve any issues but it allows for us to feel not alone. You said exactly how I feel most of the time. Grateful I read this – and sorry I wrote an entire book in your reply section lol.
Well said, Aussie Mum… My son is now 27… Severe autism, developed severe tics, OCD in his teens… Long story, but is spiraling downward … Since dental procedure in 2014 which is when I had a disabling injury… He had been doing well with contract work in his day program… But then got kicked out for his spitting tic and OCD door slamming… So it has just been me and him… And his tics and OCD prevent him from sleeping. Starting him on ane echelon protocol, hoping for the best..,
***Nemechek protocol
Thank you Aussie Mom, My two older children have moved on with their lives and my 23 yr old Autistic son is left home with my husband and myself. I wish I could build a business from home. I appreciate your story.
I am struggling with this right now very bad. This is the absolute best article I have read. I try to take my other kids out but I can’t participate because Ethan will wonder off. If I put him in a chair he will scream, bite himself and hit himself in the head. I feel like I am his personal slave. I am always right by his side. I don’t get to do anything for myself.
I totally agree with you. Although my son doesn’t need a wheelchair I relate to many if the points here. My son is autistic. Old friends I had are still meeting up with their kids but I feel like I can’t come along alot of the time because he can’t cope with the activity, behaves badly (due to being overwhelmed or similar) or gets excluded from play. It’s such a sad affair. Wish I knew how to fix it but don’t think it’s possible.
From the perspective of a disabled adult, going through my teens and adulthood was not been easy as I had envisioned. My disability is physical and I need to use a chair. As I aged, through my teens into adulthood I developed depression because my life didn’t follow the path so many other able-bodied people did, I didn’t have a boyfriend in high school, college or after. I didn’t marry or have children and never will. I was able to work for awhile. I do have friends but they have families -children, and spouses, Yet, I feel alone. I feel I ‘ve spent my time window shopping through life and some of the shops have steps. I’m thankful for what I do have but at times I am so jealous of others who take their spouses and children for granted. I know your article focused on parents isolation as caregivers. Luckily, my parents were able to work. Now that we are up in years, we are more isolated but do try to work part-time jobs or volunteer.
God bless you, Rose… I have a glimpse of what you have gone through all your life now that I am no longer able to get around with my autistic son due to an injury 4 years ago… It truly can be very depressing. I understand your feelings of isolation as well. I pray that God makes His presence known to you and that He grants you Peace. ((HUGS))💕🙏🏻
Amy, thank you for this article and speaking up for us special need parents. My own son was born a quadriplegic over 21 years ago. I was a single mom and also only 16 when Justin was born. Talk about isolation and we didn’t have the internet to connect us back then. Raising Justin taught me so much about love, sacrifice, joy and sorrow. Deep deep sorrow that strangely helped create deep deep joy. You are correct that it only get harder. The caregiver burnout I began to experience got worse every year. I didn’t know it but my identity had somehow gotten intertwined with Justin’s identity and other parts of myself needed to be realized. Both us knew we were missing something vital to who we are. I had 2 daughters when Justin was 15 and 16. The preganancies, caring for 2 babies and Justin pushed me further into the red of caregiver burnout. For 2 years I cried every morning because I knew I had nothing left and I had to somehow get us through another day. I felt completely isolated and hopeless. Yet everyday I felt Jesus helping through. At that time, I could no longer get Justin safely into a bath. Sometimes getting him out of bed and ready for the day took 3 hours. I began to realize that I could no longer give him the best care. I started to look into different homes for him. The fear I went through was awful but once again Jesus walked us through. We did find a lovely adult foster care home and he moved out. It was the most humbling process. Yet, while all my peers were in the beginning stages of motherhood I was going through a sort of empty nest process. It’s been 2 years now and Justin and I both have been learning who we are and how to have a healthy relationship with each other. He is thriving and wants his own apartment. I am now a part of a team when it comes to Justin’s care and as scary as it was, it’s the best thing to ever happen to us. Raising the extraordinary was the most difficult and beautiful relationship I have ever been a part of and I wouldn’t change it for the world.
Thank you for this… Very very true! My severely ‘autistic’ son is 27, has had No speech since age 3… He has a twin sister and older sister. I raised my kids as a single mom most of those years, leaving their abusive father when my kids were 1,1 and 3. Remarried a long haul truck driver who was home 4-8 days per month a couple years later . We divorced after 12 years while my kids were in high school. Talk about ISOLATION! It is now just my son and I … He was kicked out of his day program in 2014 shortly after I injured my back and hip … I still have chronic debilitating pain and need two canes to walk but not excrutiating… Worse part is that I can on longer take my boy kayaking in his double kayak, biking on his tandem bicycle, swimming at the beach, hiking on park trails or even a walk around the block… I am very sad for him. We used to have fun together…now he is stuck locked in the house with me, although I do let him walk beside my car at the parks…
I S O L A T I O N ! …. When the rest of your family, autistic sons siblings and step dad take trips to parks, zoo, etc. and he and mom do not get to go because it is too stressful to have him around. After all… They want to have fun and enjoy themselves…
Thanks so much for writing this article! I can relate 100%. I have a 14-year-old daughter who is severely multiply impaired, and a 13-year-old son on the spectrum. It is definitely a struggle, and although we love and adore our kids for who they are, it can be mentally and physically exhausting. You described the progressive timeline of distancing so well. We’re always looking for ways to simplify life and give our kids the best quality possible. It’s such a journey of empathy and personal growth. My faith is made stronger, and through it all I praise God for these beautiful souls he has blessed me with on this Earth. Thank you for your honesty and presence, sometimes that’s all we need.
I never really thought of my life as being isolated until I read your story. My Son is 23, and he stays by my side wherever I go, he goes. I can relate to your story and I am in agreement with Charlene, “we Special Needs moms need each other”. I appreciate your story, Thank you
I too have a 23 year old non verbal autistic son. He is to the point where we can take him out for dinner with very little difficulty. He still has a tantrum now and them and has no patience. I pray everyday he will say a word, Mom. He likes to go food shopping and will walk right along side of me. My husband and I love him very much and plan to keep him with us for as long as possible
Thank you for beautifully articulating what I’ve felt for 30 years but never had the time to process and express due to *DOING* over the years.
My special needs daughter with cerebral palsy will be 30 years old this year, and yes, it gets harder. It’s good to know that we’re not alone out here. Isolated but not alone. Thank you 🙏🏾
it’s not just mom’s with children on the spectrum or kids with medical needs. Mt twins are 20 but function around a 13 year old level. They don’t have meltdowns but they are non-verbal with almost everyone due to an anxiety disorder called selective mutism. I can count on one hand the number of birthday parties they were invited to. Even then it was to parties for other special needs kids. No one is willing to get out of their comfort zones to include my kids. Sadly this has extended to the rest of the family. I’m tired of trying.
God bless you and yours. I share in this pain with my 18 year old daughter.
What an honest and supportive post. Thank you for sharing your heart. Having special needs kids is the best hardest thing i have ever done, still doing actually. I appreciate the feeling of not being alone. I write about my own journeys as a special needs parent, amoung other things. Isolation that is big for me right now and also combating it.
Beautiful post and so real! Your Ladybug is blessed to have you, yet I know the hardships you face. Keep writing!
Thank you for this well written article that rings so true! My wife and I have felt so isolated for so long. We have 5 children – pFAS, Autism, FASD, FASD and deceased at 8 months (more than 10 years ago). Between ongoing behavior issues and the awkwardness people had being around us after we lost a child we were so very lonely. And still are. A few years ago we started reaching out to try to help others as often as we can. We started a local support group called FASD SacValley and teach TBRI classes in hopes that parents won’t have to grope around in the dark for years like we did (we started adopting 23 years ago when they really didn’t know too much that helped parent children like ours). But we find that even with that we are still pretty isolated. As our children age it is fascinating to see how they develop but also heartbreaking to see how hard it is for them to keep up or fit into the adult world. They all still live with us (oldest is 23, then 21, almost 18 and 10) and we do what we can to help them find meaning and joy in life.
Thanks for writing this!!! This is one of the most profound and real articles that I’ve ever read about this subject. It touches on the sore spots and really hits home. It’s a very honest article about the isolation that exists.
Thank you so much for this article, I cried as I was reading it because I can totally relate to the isolation and often feeling alone. I feel that most people have no idea what we insure for our children. Thank you again so much!
What we endure (sorry)
I have two with special needs (Down Syndrome and Autism) and every single word of the was so well-said.
My thoughts exactly. Everything you listed is spot on for me. I am fortunate as I do have friends that come alongside me.. though it’s a small circle.. We’ve stopped attending church regularly as it’s just too hard and no one truly understands. So thank you for speaking my heart.
I am a Special needs widowed dad. After 12 yrs of caretaking my wheelchair bound GBM brain cancer surviving daughter and I and my disabling heart attacks….and not taking care of herself ,my wife passed away suddenly. 4+ years now. Thank God for my other daughter who takes care now. None of us have lives or friends anymore…..only leave the house for Dr, Pharmacy, and groceries. It is so difficult to go anywhere exactly as you indicated, exhausting, and for what? Very true article with real experiences…..thank you for sharing.
My sweethearts are 30 and 32 now. I have fought against school systems to stop babying them and rescuing them. I have had to become conversant in medical terminology, legal terminology, school terminology . . . In many ways they have matured. I don’t have to order their food at a restaurant! 🙂 But they still struggle with reciprocal conversations making it difficult for them to maintain friends. The rest of their siblings have moved on with life. The sweethearts ache over being left behind. One’s medical needs have become more wearing, needing constant company. His self-care is at the verbal cue stage, but his fears need an adult within vocal distance. My other sweetheart now battles severe depression along with his original diagnosis. That also takes constant monitoring. Both need an abundance of love. The best gift given to me was by my husband. He made me become involved in the local high school’s extra-curricular activities. It benefited me; I was out of the house at random times, and helped keep me sane. It benefited all of my children; they learned to rely on their father for care. All of the children have a great caring and trusting relationship with him. The high school had volunteer support for some teachers who could have been overwhelmed.
My counsel~~ find another place to serve away from home! An equal but opposite stress does wonders for keeping life in balance.
Thank you for this, I’m a mom of a 9yr beautiful little girl with multiple disabilities and you said it right things don’t get easier and I’m glad someone finally said the truth because I remember when my daughter first got diagnosed they said it would get easier and it never did and every word you said I felt it, it really is nice to see that there are other ppl out there that go through what I go through and can relate. Thank you again for sharing 💗
Thank you for sharing. I care for my 16yr old son with SMA and I’ve never given much thought to my feelings of isolation. I’ve simply worked hard to create a “normal” life with abnormal circumstances but your article is bang on. Having a community of similar experienced parents is critical as it’s extremely challenging to understand what it takes to raise special needs children if you haven’t experienced it. I am grateful to be able to care for my beautiful son but I could definitely do a better job at self-care to ensure I’m balanced and healthy to give both of us the love and care we deserve.
Wow, Amy, your blog really hits home with me, have felt every single one of these feelings. I am a mother of a 26 year old autistic daughter. She will always live at home. She is very sweet and always happy, and for that I feel very blessed. But she needs a lot of help with self-care and she towers over my 5′ height with her nearly 6 feet. I have Rheumatoid arthritis, so, really difficult and painful to do so many things she needs done for her, so I REALLY relate to the part about things just get harder instead of easier. The medical bills, the isolation, its all a struggle and after 30 years, my husband filed for divorce so that has made it that much harder for me and my daughter. Its just really tough, but it helps somehow to know there are others in the same situation.
It is much worse when your child dies. We lost our son to duchenne muscular dystrophy last year at the age of 31. We have gone from not having a minute to ourselves to having nothing but time….
I am so sorry for your loss
I’m so sorry to hear of your loss. With time, I hope you will find a way to heal and live life.
This is such a great post. I’m a single mom to my special needs sun. I can definitely relate to the exhaustion.
My nine-year-old grandson has Down Syndrome. He’s considered “high functioning” and wants to run and play with other kids but he’s still very much alone. He’s never been invited to a play date and has only been invited to one birthday party, which was for another special needs child in his class. His parents run a business that operates nights and weekends and finding child care for those times is difficult already and for a child with disabilities it’s near impossible. So I retired and moved in with the family to be the Granny Nanny. Although my role is precious and honorable, it makes for a very lonely existence. Friends have stopped inviting me to events and one friend who did invite me to a party asked that I not bring him along. The isolation and hurt is unbelievable; the exhaustion is constant and as he gets older it seems more exhausting and isolating. Thanks for this report, I forget that others are experiencing these same issues and I congratulate everyone who is raising a special needs child.
And it gets much worse when they become adults if you are in UK as they are removed from you by court order under the Mental Capacity Act to residential care and enforced medication to make millions for private corporations, Read why happened to me by googling finola moss blog
I am the parent of a 30 year old who is on the autism spectrum. He is a wonderful human being who brings much joy to our lives. One of my favorite sayings is “attitude is the greatest disability!” This is not meant to diminish the individual experience of parents whose children have unique challenges, but to call attention to the ignorance in our world regarding people who are different. People’s attitudes create pain.
For example, when I express sadness about my son not having real friends to hang out with, invariably, a friend, in ignorance, will ask “Aren’t there any groups…” I don’t even let them finish their thought because where they are going is crystal clear. I’m to the point where I want to grab them by the neck in frustration about the ignorant assumption that people would want to hang out or live together, just because they share a diagnosis. It makes me crazy!
My son likes to hang out with all kinds of people, some with a diagnosis, and others not. He is always quick to say, “we all have challenges, I am lucky that I know what mine are, so I can be working to manage them. Day to day people don’t always know what they are struggling with…”
Sure, I worry about him being lonely in his life, or what will happen to him after my husband and I are gone. But my pain about him is ten times more about people’s ignorance and assumptions. It seems to be one of the remaining acceptable forms of discrimination in our culture!
I think one of the hardest parts is that if you share too much of the struggles with parents of neurotypical kids, it just reinforces the prejudices our society already harbors against the disabled. I find it better to share those struggles with parents who I know get it – who love and accept their kids without question, and to whom the hardships that sometimes come with special needs kids do not diminish their value and beauty.
I think you’re right. I always struggle with how much to share with those outside our world
Thank you for helping others to understand our struggles. Like many here I have felt isolated. Not only because of the obstacles you have mentioned but also by others who don’t understand our life and struggles. My son is autistic with ADHD and behavioral issues. For the first time I was ridiculed at the Dr.s office by a nurse because my son was being rambunctious and I was having a difficult time keeping up with him while trying to fill out forms. To her I was letting him scream at the top of his lungs push the chairs around and letting him go just so I could chase him down the hall. I also wanted to add that finding childcare has been a struggle for me, not only in finding willing participants but finding adequate care to watch him is also a struggle in itself. As people dont fully understand the amount of care and attention needed to watch my son. He seems like a normal 5 year old at first but he is not a normal 5 year old. Its been hard to make it clear that you cant leave him to his own devices and work on your own thing. He has no sense of safety or boundaries and its simply hard to get it across to just anyone. My son is a runner and you have to stay on top of him when you go out anywhere. I am a stay at home mom because of this. I would like to work, but its not an option for us right now. My sons safety comes first and we have to make the rest work on one income for the time being. I dont want people to feel sorry, I would like a little more effort to understand the position we are in. Its not anyone’s fault, its just our reality.
I have a daughter who has special needs. She is so precious! I love her to death. Recently, I have noticed that she has felt very restless, and I don’t know what to do. I am thinking of finding her a place that allows her to get a simple job. I feel like this will help me and her from feeling what you have stated, “feeling isolated at home.”
great idea if she’s able!
I’m Interested in Lisa’s comment about church communities needing to step up. When my daughter with C.P. and other challenges was growing up we avoided getting too involved with any church. Although it was not something I admitted to my friends without special needs children, I saw it as just one more place where I would want to be able to help out, volunteer, and “be there” for others and I just didn’t have the time or the juice. I worked professionally with families of young children with developmental challenges and had a lot of friends who were “special needs” parents, adoptive parents, or both. We all struggled at times. It never really occurred to me that at church we may have found people who wanted to help us. I guess we’ll never know.
I agree wholeheartedly. I am a cradle Catholic and since my son was diagnosed, I have not had the motivation to be as active in the church. I keep reading articles about how the diocese is so open to special needs people and that they are training catechists and things like that, but the proof is in the pudding, and I am not actually SEEING ANY of this coming to fruition in my community.
Thank you. I wish this was around 30 years ago.
This article speaks so much truth and could have been written by me. I have a 19 year old severely autistic son and have experienced every aspect of this article. I can easily relate to the isolation issues!
I was so touched by the perfection of this article! You absolutely hit the nail on the head with everything you said. My son is 16 and has autism – low-to-non-verbal and severely lacking in social skills. I have another child who is 14 and neurotypical. Not only is he typical, but is academically gifted and excels socially. It’s very bittersweet here because I often times feel such horrible guilt that his successes are celebrated while my other child’s challenges are so prevalent, especially when we are around other families. It’s a difficult balance to say the least. Thank you for writing such a beautiful piece to express our experiences!
Regarding isolation, I’ve aquired my 14 year old daughter’s anxiety to leave the house, interact with others, as well as various other diagnoses associated with her autism. I was fortunate to work for the past few years while she attended school (she was very high functioning), but last year, she regressed severely. We believe it was one of the medicines she was taking. She’s been off it for some time and doing a lot better. But, then She was diagnosed with MTS in Jan and required surgery to have a blood clot removed in her leg, and 3 stents added. We also learned she now had 3 PEs that had broken free from the original clot. This caused further isolation and fear. It also made us think about what changes needed to occur to keep her safe. (Her Dad was recovering from the flu during my week-long stay with her at the hospital.) From Jan to Jun, we had to make sure she wasn’t knocked accidentally for fear that the PEs would break free and cause a stroke. Recent scans have shown her blood thinner has been working and she’s at a smaller risk of danger if knocked. She’s been attending PT and homebound school outside the home environment. This has helped a lot! Summer school begins this week. I’m hoping to gain some much needed time for my own missed dental and doctor appointments. I’ve just been so overwhelmed with everything and everyone’s health. It’s so hard to get out, as you mentioned, because you are so tired, mentally and physically. But, I know that sitting back and giving up isn’t an option, either. Therefore, I take things as they come and somehow keep going…
My daughter has 5 life-threatening conditions and autism just to keep it interesting. She was homebound medically fragile until age 6, and now again except when she goes to school 2 half days with a nurse. I’ve been working from home the past 5 years. I’ve been invited to important meetings/events I can’t attend. She won’t even go outside the house due to the neighbor’s barking dog so we’re stuck inside. My husband doesn’t get it as he walks out the door to work every day, he gets a lunch hour, and I do all her personal care even when he’s here. My best friend doesn’t get why I can’t just go to the shore. Thanks for addressing this.
it’s so hard isn’t it! I’m sorry your husband doesn’t help more when he’s home.
You posted this link on Delco Family PASS, and I was amazed at the replies you got, GIVING ADVICE, where you clearly said “just venting”. And they make it sound like it’s so easy to get a babysitter on care dot com – it isn’t! There may be SOME caregivers who charge less, but my experience is that they are not qualified, and some are rather lazy, to be honest. I’m not being picky, but with my child’s high needs, the person has to keep up. Also regarding respite, while I am grateful that it is available, we cannot use respite to go out without either paying the respite provider, or paying another babysitter to watch our other child who doesn’t have a diagnosis. So there are limitations to anything available.
Thank you so much for this real explanation. My boys are 10 and 12. The 12 year old has autism and it’s very hard daily. The 10 year old has a hard time with it all. But loves big bro so much. Thank you for your honesty and truth. It is so very hard!!!
My adult son Evan is severely cognitively impaired. I have never considered a babysitter; his needs are too great for anyone without extensive trainings.
I have been happy in isolation, and now I am not. So I got pro-active. I opened a group home for him. I staff it, I manage it, I fought for a job that allows me to work when I can. His life is my priority. So are his little brothers’ lives. I have a few friends who get it. We laugh a lot together but rarely see each other. Having real-time friends is too draining, but texts and social media help.
I would not have this any other way. I am so lucky, and my sons are all beautiful and meaningful and joyful.
Thank you for this honest post. Although I can’t relate to all of it (i.e. we didn’t have play dates when our son was very young; in his 8.5 years of life so far, he’s had some play dates, but not many (and he never gets invited anywhere to play with another child). In our family situation, I feel our isolation sometimes quite strongly since (a) we don’t have any family close to us who can help; and (b) my husband and me and our son are all home together full-time (for the past 2 years). Our son finished SK in summer 2016 and since then we’ve kept him home full-time to do a specialized neuroplasticity therapy program to try to heal his brain as much as possible. However, a big reduction in the isolation for me started when we moved to a new church last September… I’ve been so blessed to develop friends at a weekly women’s Bible Study. We had 1 great babysitter for almost 1 year but she had to stop in February due to other opportunities. So we don’t have a babysitter anymore. That’s tough, but I’m thankful for the years of marriage we had before our son was born when we had many opportunities to travel and go on dates. But, we also don’t have much $ to pay a babysitter. Regarding church, I’m my son’s 1-on-1 support/helper every week for Sunday School. I don’t expect the church to provide someone qualified and able to help our son. Jesus (God) is my biggest source of hope and comfort and strength, including when I feel isolated socially.
I appreciate you writing this article. It is so true. My daughter is 18 years old. Her dad left us last year because he “deserved to be happy.” So all of the care and support is on me now. Talk about isolation. It’s crazy hard. I’m thankful for family who helps when they can. I have a beautiful daughter who gives me joy!
Keep sharing! 🙂
I would encourage everyone with special needs children to participate in your local chapter of Special Olympics. For the last 4 or 5 years now we have had our daughter participate in a weekend filled with fun and excitement. Every participant is able to be free of the social shackles that society puts on them. They are able to let their hair down, so-to-speak and it is fantastic. No judgemental looks, or glares, or remarks or awkward situations. Just pure unbridled love….
…and then they become adults. Job searching, live in out live out, still doctor visits (but by now we have somewhat of a handle and awareness of what/how things work) still making time for “lunches with girlfriends” (if there are still some around that understand you might have to bring him along). Support/understanding still doesn’t get any easier, now you just hope the church accepts his behavior to not sit still even though he looks like he is mature enough to behave. Yes, we still push onward and yes it is still exhausting. A supportive husband/family member is a must at this point, after all I’m getting older too and don’t have as much energy.
Nice article and something most folks don’t even think about. My wife and I have a 21-year old non-verbal daughter with Autism. The choices and opportunities have really slimmed down and my wife now in her mid 50’s feels isolated and depressed, and that she never expected to have her freedom “taken” from her by our daughter. It’s really tough at times and the meltdowns of a an adult child can be actually frightening.
The reality of the situation is we’re going to be parenting for the rest of our lives or until we are physically unable. Not what we expected as we look toward what should be retirement in a few years. We love our daughter and truly enjoy her in every way. It’s just life changing and unexpected. It’s a road we we are traveling as we go through life….We just would ask that others try and be more understanding. It’s not a choice.
Wow I’m in tears, you put words to all the craziness that is our day to day. Thank you, I feel better knowing I’m not alone.
I know it often feels like it but we’re not alone!
Good article….
Looking back is sometimes easier. I saw a quote and I know it is true from the journey we traveled.
With pain we gain empathy. And with empathy we gain connections with others.
Pj
Reading this at the perfect time. Although my children’s issues have improved, I can definitely relate to the isolation. Even within my marriage – it can often feel like I am the one who’s become the “expert” on their issues, who drives them to appt’s, navigates the struggles and sets boundaries; all this feels daunting at times.
Thank you for this. It is so true on many levels. Sometimes I wonder when self care will be found. As a single mom of 2 doing it on my own compounds this situation further. Top it off with my other child is not in the category, but is medically challenged with hypertrophic cardiomyopathy. So there is twice as much and still just one me.
Like you, my wish is for understanding as I’ve always said, no one knows until they walk in similar shoes as everones situation is different. No matter what your dealing with, always keep that in mind. Love and prayers to all of us that need that boost to make it through the day.
Once again thank you.
I just came across this article and it’s if you were reading my mind when you wrote it! We have a 7 year old with ADHD, SPD, anxiety, a social and learning disability and he’s currently being evaluated for ASD. My husband is traveling and I was feeling so lonely last night when I came across this. I was thinking about how it’s becoming nearly impossible to go anywhere with my son, especially social gatherings, for fear that he will have a meltdown. It’s good to know that I’m not alone.
For what it’s worth, I’m starting to practice self-care and am coming up with ways to still maintain my friendships and take time for myself, even if it means hiring a sitter or relying on my husband more so that I can get away and still feel connected to the world. I’ve actually got a sitter coming over today so that I can hit the gym and have coffee with a friend! I know that this isn’t always feasible for some but I would encourage any special needs parent to find something — some timeout for themselves — whether it’s exercise, meditation, spending time with friends, etc. I feel that this helps to combat the loneliness. It’s important that we put on our oxygen masks first and stay connected to the world so that we can be even better for our special needs kids.
good for you! yes, self-care is SO important! I wish I learned that lesson earlier
Thank you so much for this great article! I have total of 3 kids and the last 2 kids have high functional Autism and they are both really precious. I was feeling so down tonight after coming back from our local community swimming pool, seeing all the families are having a great time together around tables and socializing while their kids were playing and having a great time while swimming in the pool. I felt so down and isolated and we had the same conversation about how we became gradually isolated over years since we have been too busy with the kids therapies and care. Yes the kids dont often get invited to birthday parties and Iwe have noticed our old friends party now without letting us know since our kids are probably not a very easy guest at their house.
Tonight, I googled about isolation in parents with special needs and your article came up! Thank you .Its so true and clear and a great example of every day life. I read all the answers and the whole process was somehow therapeutic for me to see all the angles and all the shared experiences and to feel I’m not the only one . It however opened my eyes about future, since the boys are 12 and 9 years old and we have a long way ahead of us. I’m already feeling worried about when I get older and how much they can do on their own .Would they be able to hold a job, etc….Since the kids have been diagnosed at age 2 , I have been constantly stressed and terrified about the thought of something happening to my husband and I be left on my own to support the kids mentally , emotionally and physically. I work 5 days a week and rush back home after 40 minutes drive in highway to pick them up from school . I gave up eventually on the idea of baby sitter and grandparents , since no one exactly knows or agrees to follow your technique and recommendation on how to handle the situations or what to do and what not to do , even your loved ones. My husband works very long hours,
I wanted to add some other issues as well. The siblings of the special need children could face a emotional trauma, they may suffer from anger, depression , survivor guilt, etc….
My first one grew up with two younger siblings who could hardly talk, communicate and wouldn’t have eye contact with him and he was very mad that they would not play with him. He was terrified by their tantrums and meltdowns and was resentful at their rigidity of mind . Also the amount of attention we gave to special need siblings , made him feel they are more special and no matter how much time and attention we give him , he still thinks we love the other ones more . He also grew up seeing all the struggles of a mom after they were diagnosed that I believe traumatized him significantly. The isolation part started really for me when I realized some moms would not ok the play dates for my first one , when they were seeing the second one with special needs . I started feeling so bad. My first one was eliminated a lot because of his brothers! They wouldn’t also allow their kids to come to our house, since they were probably scared of the autistic ones. I also had to change school with special program and that led to my kids not growing up with neighborhood kids and being more isolated.
My heart goes to the moms and dads who have their own health issues and their loving kids and are older and single and their kids have more serious conditions than mine .. You are so brave! You are so so brave.! I wish some one would have told you many years ago how strong and extraordinary you are. You have walked a path that not many people can imagine doing it. I’m already so hurt and worried, but reading the responses made me realize I need to wake up and be more mature and brave and look up to many of the parents who shared their experiences in this site . Thank you .
I’m glad you found this encouraging. It’s so easy to feel alone in this. Online community with other parents who get it has been a blessing for me
Enjoyed reading this, and you are absolutely spot on. I would add that as both you and your special needs children gets older you will become even more isolated. Even trying to find other special needs parents to socialize with and for support becomes impossible. I have two with autism with my oldest being on the extreme severe side. Over the years from his younger years to his present adult age, Just trying to find other special needs parents to relate to had always been next to impossible.
Over the years we found that when we attended these parent support groups and get togethers with our kids, even those parents shunned us, because my older son was more severe than their kids. The times when it was just the parents who got together it was more of a competition as to whose child did better in school. We eventually stopped going because we felt unwanted, especially our kids. So we lived and continually live our lives in “isolation.” Our whole lives are our kids. Sure, we have each and we do each get together once in a while with a friend and communicate on social media…but that is about it. It’s just us. But you know what?….this is the only life we know and we have each other, as cliche as that may sound.
I am getting older now and as a result beginning to experience some of the ailments associated with getting up there in age. But for now I am still able to to do all the things that is required of me to care for my two boys in their adult years and will do so until I absolutely can no longer keep up. If that means I will have to ride the roller coasters with them when I am in my 80’s then I will if I am able to.
I’m a new special needs parent. My daughter hasn’t been officially diagnosed yet, but we are close! She is currently 2 years 4 months, has been in Phys. Therapy and Occupation Therapy since she was 5 months old. She is hard of hearing, low muscle tone, and therefore still cannot walk on her own. Just recently I started noticing how lonely this road can feel. I’m so glad we have supportive family, and my husband is amazing. Nonetheless, it seems to be getting more and more lonely- turning down playdates because we have therapy to go to, or doctors’ appointments. I’ll admit I also turn down some invitations to go to friends’ homes because their kids all walk and have no interest in sitting on the floor to play with our daughter. I love playing with my daughter, but I see the desire she has to play with peers. It is heartbreaking, but I’m trying to take it one season at a time! Thank you for writing this article!
Thank you for this article. I know that I am late to the party (2018) but its hard to find time. I work full time and care for my granddaughter who will be 13y soon. She has been with me since 2 mos old. I love love love her but the journey has been long. The whole article is great, but one part was so real that I started to cry. Its gotten harder to take her anywhere. Since transport is such a monster we stay home alot. I think I have ignored that I am lonely. I used to be very involved in the community and all of that stopped. I dont even garden or work on my home anymore (falling apart around us). My friends (past tense) and even my family dont get it, but this article inspired me to look for people who do that we can hang out with. Thank you again
Needed this today! Thank you.
Great article So true, so accurate. So hard
very realistic article, every single word is true. I m a special need child’s mom, my daughter is hearing impaired.
Great article. I’m not a mom. I’m a single special needs father. I know when read this I find it so accurate. Everything talked about Ive gone through. I had gone through a long stretch of isolation until I reached and met other parents who taught how powerful advocay can be. Yes the playdates are non existent for us because of the how the other parents and kids in avoidance. Babysitting has been tough for us as well. Which happens very seldom. You’re so right about how not only moms but all special needs parents need to stick together.
Thank you for highlighting something that is not so obvious to the greater parent population and I have to admit is not always to obvious to those of us living in isolation. One of my daughter’s teachers pointed my isolation out to me and invited me to a support group so I could realize that I was not alone. I work hard at making sure my daughter is not in isolation and forget about my own needs…I can get lost in the process. The good news is that parents of children have each other and if we just look up and around (sometimes) through the fog, we can strengthen our own community and build support.
so glad you found a support group, you’re right we often neglect ourselves without realizing it.
Amen! Amen!! Amen!!! My special needs son is now 19 and while all the children of our friends are leaving for college we are still here plugging away day by day. As he’s gotten older the isolation has grown. Thank you for sharing this – we are indeed not alone and need each other’s support! Love and Hugs!!
Thanks for this article Amy.
I am five years in to “life after diagnosis” with my son who has ASD-Severity 3/3.
His twin sister is typical and the developmental gap between is reaching chasm proportions.
Their mom (my wife only in the legal and tax reporting definition) has chosen to “fix her problem” by focusing all of her attention on her “good kid” and delegating to me as much of the responsibility and effort of caring for our son as possible.
The longer we go, the deeper I’m pulled into the isolation of his diagnosis that you so accurately and eloquently described.
The only source of strength I have left is my faith.
I have become convinced that Satan has asked to sift each and every one of us. Satan accused Job (and accuses each of us) of feigning loyalty to God, tying our humility to blessings of prosperity, health and comfort, convincing ourselves that we earned such blessings through our own works and abandoning God as soon as we loose any of it.
It is also instructional to note that 30 of the 42 chapters in the book of Job deal with his “church friends” trying to figure out who is most to blame for the calamity that befell Job and his family. It seems like many of our “church friends” today make the same mistakes, full of self-righteousness, trying to find fault and judge … instead of being humble and loving.
Knowing the course of the race and the prize at the end helps get your mind right, but it doesn’t ease much of the load!
Great article. Took some of the words out of my mouth! This is all very true. But for me as a person, I isolated myself because I have issues with large groups of people. I very much prefer one on one interactions. (I am a mom of a child with special needs.)
I’ll admit I am guilty of that too at times.
It is a very isolating business isn’t it? One Dad I was at a workshop with memorably commented to the group how tough it is to relate to coworkers – ‘they’re all chatting about how the went tobogganing on the weekend and you spent it wiping poop off the walls.’ My son had a turbulent adolescence and the aggression and violence made life very scary for us all. It was hard not to be invited to other people’s houses but I tried to remember how scary our son must seem to others and I tried to focus instead on the other acts of kindness our friends offered. Sure, they couldn’t babysit but they came over and brought wine! My son is 24 now and living happily in an intentional community about 20 minutes from us, and I have to say my network of friends have been a godsend to me. Writing about my experiences has also been cathartic for me, and hopefully helps others too!
Wow. Came here after a google search as I sit in frustration with my soon to be 24 year old daughter who is blind and cognitively impaired. I do this alone with an ex-husband who has little to no involvement save for a minor financial contribution. Today is a tough day. My lovely child does so many things that cause me to scratch my head. She has no friends that she interacts with regularly and no ability to travel outside of our apartment alone. I feel this weight on my shoulders and it only gets harder to bear as she gets older.
I think we all wonder the same thing – will it ever get easier, or WHEN will it get easier. I don’t know the answer, but I’ve found myself changing my prayers from asking for a “fix” to my difficulties, and instead I’m trying to focus on more strength to carry the load I’ve been given. May you find the strength you need and power from loved ones and Him who cares most to buoy you up.
I have 3 children and they all have autism. My youngest also has epilepsy and EoE. The isolation is real! I feel like I just go to doctor appointment and Go straight back home. I feel so exhausted. Thank you for this article.
I am reading this article from the link on a friend’s FB page, and it mirrors what I wrote a while back. Wow. Our voices and experiences are so similar, even while our children’s disabilities are very different. There is such a need for more of us to speak out because there is so little understanding. You did a beautiful job.
My article in case you are interested: http://www.scarymommy.com/parenting-child-severe-disabilities/
I so appreciate the honesty and transparency in this post and all the responses. It’s such a rare thing to be able to share from the heart some of the painful realities of parenting a child with special needs. We, as their parents, adore them and are willing to try to move heaven and earth for them. But it is so hard. I realize, as I read all these posts, that I’ve grown accustomed to the isolation that’s part of this journey. It’s encouraging to know that I’m not alone in this.
Wow! It’s like you put my thoughts into an article. I have become so isolated that in recent years, I opt not to vist family on holidays. I think many of them feel that I am shunning them, but their houses are not accessible. The risk of having to carry my now 13 yr old up and down stairs and risk falling as well as seizures due to noise or visual overstimulation is not worth it. My son generally is happy and full of laughter. One year he laughed loudly for several minutes while we visited family for Christmas. I couldn’t stop him, then a younger relative who was napping with their typical child tried to shoosh him. I was so upset by this. My baby had no way of knowing he was disturbing anyone. Nor do I think it is fair for him to not be free to enjoy something his own way. He has been through so much! He deserves to be happy and laugh as loud as he can whenever he wants. That was the thing that I believe triggered my isolation from family to extend to the holidays. We can stay home and enjoy each other.
Likewise, most people I interact with have no idea I have a special needs child. I have encountered too many people who seem to instantly have pity for me when I mentioned it, so I just stopped. My husband and I often talk about how different life is from other parents. We really don’t have close friends and getting to go on a date is a miracle. But I am not sorry about how we have to live our life. If I chose to go down that sorrowful road, I would not be able to enjoy life. My son is a blessing. I will continue to cherish every extraordinary moment I get to have with him.
Thanks for writing this. I feel so much better knowing there are others who understand.
Thanks so much for your comments. It’s so easy to be hurt by our family members, and we’ve certainly been in similar situations both with friends and family. I used to feel more resentment towards the offenders, but have slowly (VERY slowly) learned that it’s not fair to be angry for too long because they just aren’t going to understand what it’s like. They can take a shot at sympathy, but empathy can only come from walking that path. Which is why I’m so grateful to you and others in the same boat who share your stories, as I know we understand each other and can take solace that we’re in it together living this extraordinary life.
You captured the raw emotion so well! While my child’s needs are minimal compared to others, the struggle of a mother dealing with any sort of reality other than the “normal child” experience we are taught to expect is certainly a challenge!
You should check out this post I read about being a stronger, happier mom, it was really helpful for me!
https://adayinourshoes.com/habits-of-happy-strong-and-successful-special-needs-moms/
Wow, just wow! I so needed to read this and people’s comments about this topic. Our first born daughter is is now 33, and has been a puzzle to us and drs since she was young. A very long story shortened, high function autism spectrum, part of her brain works on almost normal age level but other part is about at 10 year level. This conflict inside creates so much anxiety she has been hospitalized over 100 times since age 16. We have 3 other children we tried to share or time and attention to but of course it is so hard. Mental illness is difficult to live with, and the brain disfunction makes life so hard for her. My life has rotated around her, our other kids also adults now have made peace with their sister and who she is and love her. The fact is though, we have all been affected by this crazy life. We all are getting therapy. We were very isolated, we lived away from extended family so that also was hard. Appointments for counseling, occupational therapy, dr appointments and such kept us so busy. We couldn’t go on outings easily or to social gatherings because of the high anxiety of our daughter. I commented to my husband once about feeling like we were on the outside of this “snow globe world” watching life happen for everyone else but we couldn’t be part of it, and those people had no idea we were on the “outside “ watching them. A very lonely feeling. I so would have loved to have friends stop by for a quick chat and encourage us. No one knows what to do with “different “.
We know exactly what you mean and loved your visual of being stuck on the outside of a “snow globe world” watching everything happen for others, but not for us. It can be a very lonely feeling, and I loved your advice for those that want to help extraordinary parents – just stop by for a quick chat. It means the world to us.
This hits close to home. Beautifully written . As I sit here , with tears flowing down my eyes, bad headache that is not leaving me alone and me making an.appt to go to the doc to get myself checked out, it gives me some sense of comfort that I’m not alone.
You are absolutely not along, and good for you on scheduling an appt to get help. We all need all the help we can get.
God I need to confess to you that I am not that special
I believe you’ve made a mistake picking me as your vessel
I don’t understand what strength you see in me
I’m lost I’m scared unsure of what is to be
I cry I break a piece at a time
When I think of the mountain they must climb
I do not cry for myself at all
I cry for my special children the day that you call
They will be left alone in world full of hate
Without my loving embrace to help soften their fate
You see God my body is getting older with each passing day
I need to know that my children will be ok
God please if I am to be your soldier help me be stronger
This fear that’s embedded in my heart and very soul help me conquer
Ill be honest no one helps everyone keeps us at arms length we dont get checked on and his twin sister whos not autistic feela just as isolated which she is. Ive begged for help from family members and got nothing. Money thrown at me which was more onsulting so if you are lucky enough to have 1 person in your life that even trys to care, thank them. Because I wish I did
That’s a great point. It sounds like people want to help, but might not know how to do it in the way that you truly need. I don’t know if you could provide them some guidance, or if it’s just not working. We’ve certainly seen both in our experience. It’s a good time to pause and thank those that do care and are trying to help in meaningful ways. Those angels help carry us all.
This has been my experience caring for two special needs children who are now closer to adulthood. My neurotypical children didn’t get invited to peer’s parties and we were held at arms length since my first child with a disability was born 21 years ago. I divorced my kids’ dad after a difficult marriage of over two decades. He only wants fun time with my youngest who is in high school. I have been so alone and isolated for many years, especially now I am parenting alone. I have a few life long friends, but no family around. It is a struggle, but I wouldn’t trade my kids for the world. I try to take things one day at a time and create positive for us all. Now that Covid 19 is here there is an extra layer of stress because our kids are at higher risk and so the isolation becomes somewhat deeper and protective for them.
I love hearing both about your personal story, and even more about your positive outlook and efforts on a daily basis. We hear you on the quarantining & social distancing – it takes on a whole new level of difficulty with special needs kids being both at higher risk, and often in need of services, schooling, & daily routine. Keep fighting the good fight!
I am a 63 yr old man , Life is sometimes not what we thought it would be,
After 20 years of marriage and 17 years widowed I never thought I would be heir.
What I seek is a woman of character, I am a unique kind of man, Our lives are molded by our past , Well my past follows me around, Some call it baggage, Most even run from it , I call it a blessing. My son is 25 yrs old and has a mild case of Cerebral Palsy, He is in a wheelchair, On the plus side of things He’s a super young man, with a personality that lights everyone up, Matt is the youth voice of the Tampa Bay Rays baseball team and announces from the press booth at most home games at Tropicana field. Its a lot of fun and way cool. He just Starting his 11th season. Next will be the lightning and he has even been in the Miss America Pageant. Among countless speaking engagements. I coach his disabled baseball team and I have 67 disabled kids that play. they all are adorable. Matt is now doing events for the disabled his last one raised $16 thousand dollars he gave it all away to the ones in need … during covid 19 hes doing food drives for the disabled in need.
Yes my time is compromised constantly and even after he moves on he will still come home for weekends and holidays sometimes, He will always have a place to come home to.
So Dating / My future this is my challenge. I have come to the conclusion there the woman in my age group have all raised there kids and don’t want mine in there lives, and I have come to the realization I will be alone the rest of my life.
Isolation started IMMEDIATELY. My special needs child didn’t sleep and cried most of the time. She’s now 5 and that hasn’t changed!!! Some of us desperately seek diagnosis to make sense of the chaos we were immediately dumped into. There is NO luxuriously slow process for people like me.
Hi my name is randy, and I am a single dad of a special needs child my son who is now 20 so to be 21 his mom died 4 years ago from breast cancer, and I am thinking of starting a blog for all special needs parents but more specified for dads because I do not know how many are there but I would like to give them the opportunity to speak were as they would not do so in another situations. i would like to say this post is very inspirational to me and thank you for writing it.
This is by far the most accurate and absolutely true article I’ve read on this. I have a 24 soon to be 25 year old who is 19 soon to be 20 years past his prognosis. Brain malformation, seizures, CP, HPC, macorcephalic, the list goes on and on and on. Mentally he is about three years old, very vocal, and very demanding. My husband and I often joke that he simply tolerates us as long as we do what he says, when he says it. We are being held hostage by a wheelchair bound terrorist. LOL
I say things like this to all of you, you get it. I say it to anyone else and I’m selfish and mean, wishing my child was dead. There are days when I’m so alone that all I can do is eat my feelings. My husband and I are roommates because COVID-19 has prohibited us from getting away from the stress (I’m a teacher and working from home’ he’s a teacher in an upstate New York Womens’ Prison and an essential worker.). We have nursing for the most part but it’s not consistent so Cody ends up attending “Zoom School” with me. I’m sorry. I’ll stop. Thank you for this. I would love to create a Mommies group that takes weekends away together (without kiddos and husbands) just to get a breather.
Hey Everyone – I understand, I’m living the same reality as many of you. Please keep this in mind though… “people first” language. Example, child with autism, not autistic child; child with a disability, not disabled child. It’s an important distinction for all of us with children who have special needs. I have also learned to not call my child’s behavioral issues “meltdowns”, which I did for many years. It just gives others more reason to blame the child, rather than understanding that these behaviors are almost always brought on by a “trigger” – even if it hasn’t been identified yet. Keep trying to figure out what the trigger is too, it can be something very obscure and unusual, especially in children with autism. One of my son’s turned out to be small spherical objects such as pearls and beads. I am constantly advocating for my child, but figuring out how to advocate for myself in terms of caregiving and isolation is something I have no clue how to do. I hear you. Hang in there…
[…] not forget about the isolation that comes with caring for kids with special needs and the lack of respite. It is hard to find babysitters, and respite services can be quite costly. […]
I wish the counties understood this. I had a hard time getting them on board about what over lives are like. Isolation is not a choice. It’s not to keep our kids out of the community it’s just part of the life. I know counties think we are purposely keeping them home. It’s not purposely. It’s the side effects of a disability
OMG!!! This is so me! Thank you for letting me know I am not alone!! My daughter is 31 years old and I have gone through every stage – I am so happy I found your post!
This is a great post, and I appreciate you sharing your experiences so openly! It is difficult to do so at times, but you’re correct in saying that we all need to make sure we’re getting the support we need. It helps in so many ways!
I find myself consumed with what will happen to my daughter after Im gone. Im a widow and have lost about half our family. My child can not handle death and has gained a tremendous amount of weight due to that and the fact that she cant hardly exercise. She was a social butterfly before and still is somewhat but death and covid have changed her. She will not survive in a group home as she NEEDS someone to take care of her that she has knows, likes and feels comfortable with or she will give up. I just cant take this. Its eating me up so badly and I cry daily. No one seems to get it or care. I know that I will never be in another relationship because no one on the ‘outside’ will be able to handle the pressures of isolation and appointments, behaviors and then be able to truly love my daughter like I think they should. What family I do have left expects me to go to them and dont understand how exhausting it is just to get there. I love my daughter more than anything in this world and will do everything possible to make her happy and I would have her all over again if I had the chance. Its just lonely and people stop coming over, stop calling, stop inviting. I wish they would stop to think about how we need their support now more than ever and call or come over every once in awhile rather then running away. I get that our lives are boring to them or they cant relate and thus dont know what to talk about but try.
I am in a mission to make everyone understand how we must fight for every single basic need our child needs because insurance (medicaid) doesn’t want to pay for it and social security only allows so much income each month and not enough to actually pay bills etc. Going places is a chore as stated to in the article. We need to make sure we can get into the building and where we can change our growing child’s diapers, what to do when our child has a meltdown, dealing with the judgemental stares and rude comments when we do or don’t discipline our misbehaving child. We’re expected to be perfect parents and know how to take care of our special child and know how to handle every situation that arises. Sometimes its just too much.
Again I love my child more than anything and wouldn’t give her up for anything. We just need a place to express ourselves sometimes and in a place where we don’t feel so alone.
Me and my husband are caring for our 24 year old son. He is delayed, non verbal, tube fed and he needs us to do everything with him because he cannot do anything for himself. We don’t go out anywhere because we don’t belong with anybody because all of the kids that was growing up with our son have lives of their own now. Even we don’t get invited to any family events. It gets so depressing sometimes.
This article is very much like our life story. We live outside the city so we don’t get involved with much activities and groups. Especially now with covid 19 still very close by. The only activity we do is take our son for a drive. The gas is so expensive now so our drives are few and far between. I know that we are certainly not the only family that has a life like ours. Thank you for your post! ❤️
Well said. Relatè deeply. Thank you for sharing . Finding friends that do not live with this reality is hard especially when i cant show up as readilly. It is hard to admit but the comparison gets to me at times. Also this resentment for this life sentace of çaregiver burnout dwindles me hope and motivation. I take it one day at a time. Try not to future trip. Take best care of mental help and not project my crap onto my son.
With all the trials, I would not of grown into the woman I am today. Though, some days im a bitter betty wishing life were different. Yet, acceptance is the answer to all my problems it seems. Sending love to all
I am a single mom his sperm donor and there’s no other word to call him took off and goes to me right before he was born even though we were supposed to get married and hasn’t been around since. I had to cut off my family because of very dysfunctional unsafe behaviors and issues since I was a child didn’t even have custody of me. and I live in a town where I don’t really know too many people as it is and with all the issues like you said of being a Special Needs Mom but I’ve had people tell me straight like he’s too much I can’t handle him you know about being my friend the other people’s kids get freaked out when he has a meltdown and I get that they don’t understand and it may be scary for them but it’s still sucks and breaks our hearts you know. but I think the real loneliness for me is that it’s just me and him all the time I have a second mom but she lives hours away and we really get to talk because she works so much and I have a couple other family and friends but they live a half a ocean or half states away nobody’s near me so a day and day out it’s me and these walls and the struggles and trying to have a giant dog and an apartment all by myself. I did get the dog before I knew that he was going to have these issues I got the dog when he was about nine and a half months old. in my defense. it’s definitely wasn’t what I had planned out for my life and for my son. I wouldn’t take him back for the world he is my Miracle boy! and he has brought me so much joy and taught me so much. I just wish people could let go of the little bad that they do see and see beyond that the true amazing kids of these kids with disabilities and autism and all the other disabilities that go around with that are really amazing funny loving kids just like anybody else just a little different.
The isolation and loneliness is spot on!!! I had lots of friends before I had my daughter. After, I slowly became more and more of an outsider and on my own journey. I often feel traumatized by this and don’t know how to find the joy in life anymore. Thanks for writing this. It is so refreshing to know that I am not alone!!
I cried as I read this… My daughter is 6 and has Down syndrome. The days lately have felt so long. I identify with the part about it getting harder not easier. That’s how I’ve felt lately… I also feel like no one else in my life understands that I’m exhausted as soon as I wake up. I’m just tired all the time. I also feel as if I can’t leave her with anyone else. She’s non-verbal and no one understands her like I do…. It’s good to know that even though I feel alone in my feelings in my real life, I’m not completely alone. There are more of us out there.
I am 61 years old and I have a 35 year old autistic and mentally retarded son. It is very difficult. He has never had a friend. He always gravitated more to the staff at schools and day programs he’s attended. There was one exception. One of the people he was in a program (staff member) had a daughter who treated my son like he was normal and they got along very well. However, she was much younger than him and she grew up and moved on and he still pines for her. But there is nothing I can do. I understand it. Everyone moves on and grows up and wants to experience life on their own before they decide what they want for themselves so while I do get it, it doesn’t matter because it still hurts. I am experiencing arthritis and some medical issues and I can’t get anything done about it because one of the issues requires surgery and it’s a long down period and I don’t have the resources for that situation so I just have to live with a messed up foot and pain. I love my son so very dearly and couldn’t live without him but I feel isolated all the time. His day program is only from 8:30 til 2:00, 4 days a week. My husband tries to help most of the time but it’s just not enough. He doesn’t get him like I do. Sad and lonely mama!
Your blog post beautifully captures the deep and often overlooked isolation experienced by special needs parents. It’s refreshing to see such honesty and openness about the struggles these parents face. Your words serve as a reminder that while the journey may be challenging, no one should have to face it alone. Thank you for shedding light on this important topic.