One of the hardest aspects of being a special needs family is accepting the reality that this isn’t something you’re going to “get through”. I’ll be honest, it really bothers me when people make comments like “you’ll get through this” (referring to stress of special needs parenting) because I know I won’t.
To get though something implies that there is an end. Getting though means that one day this will be in our past and we’ll have moved on. If you say you went on a hike through the forest that means you eventually left the forest. So telling a special needs parent that they’ll get “through this” is a lie.
Special Needs Parenting is Permanent
The hard truth of special needs parenting is that this is our life. Until God calls us home, there is no getting though it. When your child has special needs it’s not like a sickness. We don’t bring our child to the doctor, get some medicine and become cured of the special needs diagnosis. No, we bring our children to the doctor (so many doctors) to try to manage their conditions to give them the best quality of life possible. We know the doctors don’t have a cure, there is no light at the end of the tunnel here in this life.
Luckily for me as a Christian I can hold onto the hope that healing will come someday.
“It is the same way with the resurrection of the dead. Our earthly bodies are planted in the ground when we die, but they will be raised to live forever. Our bodies are buried in the brokenness, but they will be raised in glory. They are buried in weakness, but they will be raised in strength. They are buried as natural human bodies, but they will be raised as spiritual bodies. For just as there are natural bodies, there are also spiritual bodies.”
~ 1 Corinthians 15:42-44
Learning to Cope
Even though I have this hope, it doesn’t make the struggles of special needs parenting any lighter. It is an extremely difficult calling on your life. In fact, the stress that comes with the special needs parenting can lead to PTSD.
Since there is no “getting through” this, we must learn how to cope or deal with the stress we face every day. In fact, I would argue it’s the most important thing we do as special needs parents. We need to acknowledge that special needs parenting is not a stage in our life we will work through. We need to determine the best possible way to deal with life the way it is, because our child’s disabilities are not going anywhere. Keeping our mental health in check is extremely important, we need to find healthy ways to cope.
This will look different for everyone. The first step however, is to make sure you grieve the diagnosis of your child. Next, I suggest you find things that are therapeutic to you. Find ways to squeeze in some self care each day. Finding ways to fit some respite into your schedule should also be a top priority. Maybe for you it means getting your nails done or meeting a friend for coffee. Others might find a support group helpful. Personally, I’m trying to figure out if we can hire someone to come clean our house every other week as a way to take one thing off my to do list.
Professional Help
As I said earlier, the stress associated with special needs parenting can be so great it can lead to PTSD. Depression and anxiety can also be common for special needs parents. If you find yourself feeling this way I highly encourage you to seek professional help. Although it’s hard, don’t be ashamed to admit you are struggling. The demands placed on our lives everyday without ceasing are incredibly high. Since we know that we will not be “getting through” special needs parenting, we need to do what it takes to keep ourselves healthy both mentally and physically.
Do not, I repeat DO NOT let anyone make you feel guilty for taking care of yourself. That includes yourself, there is no place for mom guilt when it comes to special needs parenting (I’m talking to myself here too). You have enough on your plate already, don’t become your own worst enemy.
Don’t Forget
At the end of the day (or in the middle of it when you want nothing more than a nap) remember that you’re amazing. What you do day in and day out is done out of love. I know you wouldn’t trade your special needs child for anything. You carry yourself through each day with grace and compassion. You are strong and determined. Your child adores you. Even though you feel invisible most days, you are loved and cherished.
“For I can do everything through Christ who gives me strength” Philippians 4:13
Thank you! I’m so worn out but I’m held up by Christ. This week will be the 19th anniversary of the death of our first special needs child. We miss her deeply and have been permanently changed by her. Our youngest sons are special needs. We feel old and tired. We love all of our children ferociously. Money is perpetually tight so we don’t have much relief, but we live in a town that offers a free respite night once a month during the school year. 😍
Thank you so much for sharing Becky, I’m so sorry to hear of your daughter’s passing. Glad you have the comfort that they are living free from all the limitations she had here on earth. I understand money always being tight, that is awesome that you have such a supportive community.
As mothers, daughters, care providers, we all struggle to find the balance in providing support while keeping the balance of work, finance, caring for family, relationships and self care. We are in the midst of ASD diagnosis for my slightly quirky yet highly probable Aspergers child. My heart is still aching and I constantly try to find solutions to each struggle – social skills, anger, routine, active listening… and the list goes on. Meanwhile, I’m sitting in an airport traveling for work whilst Dad is home holding down the fort. Life and raising children is hard enough let alone finding strength and extra extra capacity for my kiddo. I appreciate this thread and the honesty here… nothing can make this feel better for our family or ‘cure’ my son, but it is so comforting to know that I’m not alone. The more I read, I actually believe I have a boy with lots of gifts and some deficits too… we will keep on working to help him progress in weaker areas because that is just what Moms do! 😉
I have it “easy”. My child “only has” ADHD. He was 3 1/2 when I started realizing that his energy and activities were far greater than normal. I tried to handle it myself, but when his Dad decided to do the opposite behind my back (he thought I was too strict), it just got worse. It tore our marriage apart, and my sanity to shreds. I finally convinced him we needed help after my child was dismissed from 2 child care facilities in 5 months for being violent & destructive. We had a horrible time finding a child psychologist who would admit it wasn’t just a normal phase. I’ve raised two other children & one was pretty darn energetic & had anger issues. They were “normal”, this one wasn’t. I finally found a doctor and counselor who believed me & worked with me to help my child find his inner awesomeness. He too struggled with PTSD as his father left us and he wouldn’t allow me out of his sight. It’s taken time, medication and counseling, but he’s doing well at school. Dad still continues to undermine & interfere, but at least he’s seeing him regularly now. My child has gone through a major growth spurt, and developed a strange side-effect from the medication after 3 years, so our doctor is trying new medications. When it’s in his system, he’s wonderful. Before he takes it, and after it wears off (there isn’t any ER form of it) he’s scary, but I’m doing the best I can, trying to wait for the adjustments to level out. Still, there are times I feel the old fear, anxiety & stress build up. I don’t want to go through that horror again. I know I need to find someone to talk to, but my insurance forces me to go to their choice, and I’m not sure they are right for me. Thankfully, I have a new man in my life who works hard to support and back me up. I’m grateful for him, but mostly, I’m grateful to God for being there always. Especially when things get tough.
Wow, thanks for sharing Brenda! First off, you don’t have it easy. While my daughter has Cerebral Palsy and needs assistance with everything, our son has ADHD and I know how exhausting that can be too. They are two very different types of special needs kids, but they both have their challenges and demands on us as parents. I’m glad you now have a support system, and hope you’re able to find the other answers you need. Best of luck!
One of my friends shared this on Facebook… Thank you. I am currently sitting in my oldest (15) special needs (asperger’s) son’s hospital room as they are hanging his first round of chemo. In December he was diagnosed with melyoidfibrocis/myelodyplasia which I’d left in treated would eventually lead to leukimia. The only options were wait and see or bone marrow transplant to cure it…Praying we made the right choice.
Between my husband and I and a few friends someone has to be up here 24/7 for at least the next month. Which if he were an only child would be no problem at all… But we have a high strung very ADHD and asperger’s 9 year old, and a 5 year old currently undiagnosed with anything… So I have to divide my time… Make the most of my time at the house cleaning and spending time with the younger two in the evenings while my husband stays up here… Weekends will be the opposite to give him some time in a real bed.
Oh my goodness Andrea, I am so sorry. It’s horrible when families are split between hospital caring for sick child and at home with other children. Praying for your and your kids! Also praying help will come alongside of you to help with your kids at home. You’re being pulled in every direction I’m sure.
We always revel in the words of others who “get it.”
I don’t have children, but my mom has Alzheimer’s, so I totally get the concept. A Christian song came on the radio the other day with the line “things can only get better,” and my first thought was, “That is so not true.” I’m not saying life is awful by any means, but when it comes to my mom, things will only get worse until she someday goes to heaven (when, as you pointed out, things will get infinitely better for her). Thanks for being willing to say the truth of the matter.
This was such a truly amazing and inspiring article. As a special needs parent myself, and a Disability Parent Life Coach to parents, this was truly a fantastic article that hit home to me. I will be sharing this article with the parents that I work with. Thank you so much and God bless you!
Lisa Bernardo.
It is really great info! Appreciate that you share this information. Thanks Amy! 🙂
I try to keep this in mind, but, most days it is the farthest thing from my mind. My husband and I have 4 children (9, 8, 4 and 2). The oldest has ASD, Lennox-Gastout Syndrome (hard to treat epilepsy), ADHD, Sleep Apnea, Mirgraines and a low immune system. So on top of already special needs he is sick frequently.
My husband is a truck driver and does everything he can in for of support when he is home but can be gone for weeks at a time.
I had depression and anxiety both, which causes me to worry non stop about thing beyond my control and things that don’t need worried over (what happens if he gets up while I am in the shower and gets out of the house). It takes everything I have to take care of myself and many many days it does not happen as it should. The depression often makes me feel like I am a bad Mom as I often don’t do all the activities I grew up thinking I would do with my children or that I see friends and family doing with theirs. We hardly leave the house if we done have to when my husband is gone and I am usually so tired I don’t want to do anything. I do make sure they are fed, bathed, clothed and get some story time and help with homework every night but not sure it is enough.
I feel as if my other children suffer/will suffer from having parents who get so worn out. Luckily I can see that they try to understand and they all love their brother ferociously.
My goal is take each day as it comes and to try not to worry (any more than I have to) about the future. Trying to work more self care in so I can be here for my kids in every way as long as I can.
It is not something we will “get through” but living through the struggle as bad as it is for us has got to be harder on my son so I will continue to put in my happy/brave face (even when it’s a mask) and push through.
Wishing everyone Happy Holidays and the best of every day. And to all special needs parents when you need to hear it. You rock even if you don’t know it or don’t think so.
Thanks for this. We just got a diagnosis this week of autism and intellectual disability, after knowing for 4 years that something was off. She’s 5, and they put her at a 12-24 month level. I am grieving, which feels wrong because she’s no different than she was last week, but it feels like something is missing. Maybe the “maybe she’ll grow out of it” thought.
It’s not wrong to grieve at all, you’ll need to give yourself time to adjust. Good for you on getting the diagnosis and facing this head on Kayla. You’re right, it’s not something she’s grow out of, but I do believe you’ll be better equipped to know how to handle things with a proper diagnosis. It’s a tough road, but you can do it. So often, it’s just got to be one day at a time. You’re not alone.
Hi,my son is six year old.He was diagnosed with Autism.He was very happy baby, but as he is growing he is being more aggressive day by day.He is non-verbal.He just want to do whatever he wants.If I try to force him to do something ,he hits very badly.My husband was very helpful. I’m taking care of my son, sometimes I’m very restless and depressive. My behaviour has changed a lot.So me and my husband started having fights.I don’t know what to do.He lives me lot, but sometime he does not try to understand me.I’m being helpless 😓
I have 3 on the spectrum. 23, 25, and 26. Yes all mine. We didn’t know there was anything wrong until it was too late. If you think your tired with your cute little kiddos wait until they grow up. Crippling depression and ptsd take on a new meaning. Councilors for me have been worthless. Their best advice is to put them into a home…yah, not happening. We have been grieving for years. I imagine we will grieve until our last breathe. Truly our hope is that we will out live them…if only by a day.
Inspiring article. Great job.
Such a touching comment and my wife and I have shared similar comments. While John is much younger, we know we need to be around for him, and our biggest fear is that he’ll be here without us. Often when we see homeless folks, and realize that many have mental disabilities, we fear that John would end up in a similar situation without us. Maybe that’s an unfounded fear, but it makes us have more sympathy and love for those in need. Anyway, I know that’s a tangent.. I’ll likely come back to this comment as John gets older and we face new challenges. Thanks for sharing!
Wow. Thanks for the article. I know people are just trying to be supportive when they say “you’ll get through this” but you’re right. It’s not true. My other favorite I get so often is “I don’t know how you do it.” Again, they’re trying to be supportive but I just want to say, I don’t have a choice!
My son is 6, almost 7, and was diagnosed with ASD at 18 months. At 4 years old, after hitting rock bottom, he was diagnosed with Generalized Anxiety Disorder and requires daily medication in order to live a happy life. Last year at age 5, we added Epilepsy to his list. Then after being sick nonstop, we had blood work done and it turns out that he has IgA Deficiency, which means his body doesn’t produce certain antibodies so his immune system is compromised. His acid reflux has just gotten worse, but it turns out he now has rumination syndrome. Finally, next month we have to get zn MRI to see if he has a tethered spinal cord, which is a mild form of spina bifida and would require surgery. Yes, it’s a lot of stress and I’ve realized that I’m stronger than I ever thought I could be but that’s because he needs me to be. Most importantly, he’s so brave and such a good boy thst he deserves to have a great support team (I’m lucky to have my husband and parents very involved as well).
As I am reading this article, we are in the midst of the COVID-19 pandemic and because of his immune system, we have hone nowhere except my parents’ house and a daily car ride with no stops. Even when his horse therapy resumed, we had to decline because the therapist was unwilling to wear a mask, so now he doesn’t even have that as a break in the monotony. Definitely feeling the mom guilt!
Whew! Sorry to vent but it’s refreshing to read the stories of others leading a similar life and “get it”! Thank you!
@Jenna. Thanks for sharing your story and it lifts us to hear about others not only struggling, but remember why their doing it and that’s important too. Even when we don’t want to, or feel it’s impossible, it’s amazing that we’re able to rise up (or muddle through) and come out the other side of each new difficulty we face. We don’t get “past them” very often, but we figure out a way to live with them. We took John on our nightly “COVID drive” for an hour tonight as well. We just drive around random neighborhoods with no stops. It’s a relaxing time where he’s not banging (too much) and car rides sometimes even calm him before bed. Not always, but it at least feels like some respite for us. Glad you have a great team in your spouse and parents!
I have 3 kids with special needs…2 are adopted….
First of all—-THANK YOU FOR THIS LOVELY ARTICLE and WEBSITE…very encouraging read articles like this.
….And COVID ads an exciting twist to our lives, does it not!! (Sigh…) The general population is now so stressed. For us, it feel like, “Welcome to our stress party!….” because we LIVE in the stress zone! :))
Yes, we hear these sort of comments and they are just NOT helpful, are they? When I feel very alone, exhausted and depleted, I look for articles like this.
….And trying to find a counselor/therapist that UNDERSTANDS what you are going through!! HA ! It can be a JOKE, right??? I know I need one, but how do you find someone who really “gets” it? I am tired of explaining my situation to people who look at me with blank stares. And I am noticing medical professionals start to look at me as if I am crazy, if I start to share.
What is wrong with our culture? Why is it not ok to be honest about being overwhelmed? Why does being overwhelmed make you a problem? I can see people wanting to back away, if I start sharing our story or our daily life. I feel like saying, “HELLO–overwhelmed does not equal crazy”, lol!!
Today the school told me, “the teachers were overwhelmed by me” and I felt like saying, then do your job and inform them about my child’s unique situation, struggles and needs, so that I don’t have to do it!
I am a christian, but I find the church to be absolutely irrelevant to me. The church has dropped the ball on being there for parents of special needs children and for single parents of special needs children. I asked my church if I could start a social group for single mom’s, and was told that it was “too specific” and “that it would not attract enough people”
….MMMMM….I beg to differ. I bet it would be OVERFLOWING.
I recently reached out to ANNE (https://www.aane.org), an autism organization, and to Parent2Parent (parent-parent.org) to see if/where I can find some online or local support. (I do see one blessing of COVID is we can now see a therapist/mentor anywhere in the US and most groups are now online.) I also found a website specifically for single mom’s called ESME.com. Thank god for the internet, right??
I have tried dating, but I find it is all just TOO much for even the strongest, bravest man….My family is not very supportive.
Sorry to vent and be so negative. I am so tired of being strong. I find it very hard to find ways to take care of myself. Thanks for the reminders and your website.
Sally- I am in the same boat as you. I’m a single mom with special need kids. I totally agree that the church needs to be more of a support (Yes, I am a Christian). And I agree with your comment on dating as well, it just isn’t happening. It’s by the grace of God I make it through. Blessings to you.
Hi, I’m far away in England… but in so many ways feel close to you all. I have a daughter with autism, Down’s syndrome and global developmental delay..she’s 16, currently attending a special needs school. This gives me a little bit of freedom but I’m on countdown to when school finishes. Then all my freedom (the little bit I have) will go and will be more or less permanently having to stay at home giving 24 hours care. I’ve been counting down from the day she was born.. knowing the end of school days is the time I will close my door to the world and just exist. Of course I love her, care for her and protect her as much as I can.. but I am 58 and exhausted.. physically and mentally struggle to give anymore than I do now…this is the first place I have found honesty regarding how it truly feels to have a child with special needs..
I have a 6 year old daughter,,shes in grade 1…She is asd,adhd,and sensensory…She got the lot..She litererly shaved my life,,she can be so kind to every,,shes an angel to every one except me,,shes undiagnosed,,ive been waiting for 3 years ..The fights ive gone through to get her help has been hell…Her school treats me unrespectfully and dosnt believe a word i say…its only me and my daughter who i luv more than life,,the mountains ive climed,,the rivers and water falls ive cried a million of them and still do…i now feel like ive been shut out of her life because of her school…she never listens to me,,she never does what she told,,were always fighting,,she second gueses me over everything…I hate my self i now live in missery,,,whats left of my heart bleeds more each day….My daughter saved my life and gave me a second chance to live,,shes ripped it out from underneath me and took it away,,she has no respect for me at all….i dont want to be here any more,,i dont want to hate her…..im just useless everthing i do is rong,,she blames me for everything she does rong….How can i come bak from the hell and hurt i live every minute of every day….I ask for help and i dont get it…ive shatterd into a billion pieces and cant fix it…..
I want to share, maybe give insight, or advice if it will help anyone. Our situations are varied in diagnosis and ages, but what a wonderful place to share, lift each other up, and search for answers. I’m married 30+ years, 2 grown children. My son has autism. I taught 4th grade and thought that would help me get the support my son needed because I knew the school system. It did not. Everything is a fight. We started social therapy age 2, speech therapy age 3, family therapy every week to help our son but also for us to know how to parent our son….all the way through high school.
Tip: video games are a reality but do not allow violent realistic games!
Do not be afraid of medications as guided by a reputable doctor. It can improve everyone’s quality of life in your home. It won’t fix everything. Our son needed 3 different meds for ADHD and behavior management.
I recommend much prayer, read, find a psychiatrist and psychologist. It will take awhile to find a good match. A man psychologist worked great for us connecting with our son over music and talking “man to man” he would call BS when my son was lying and making up stories. It was good to be called out by someone besides mom and dad. Our son is very verbal and social but extremely awkward and like some kids in school their disability shows and neuro-typical kids will rally and support them…..not normal looking autistic spectrum kids. Our son was a terror at home and great behavior and manners at school, a wonderful happy cashier and bagger at Kroger grocery store.
He lived with us until age 25 but it became to much for a 200 lb man to throw a temper tantrum like a 4 year old refusing to take his medications or bath. It pains me to admit we had to call police for help on a few occasions to calm him. (We never had guns in house!).
Get the diagnosis! Do not be afraid of labels on your kids. It gets them resources to help. We didn’t apply for social services or social security benefit support until he was 21. Do this as soon as you get a diagnosis! They will reject approval the first time(standard procedure) reapply the next day. You do not need an attorney for this there are professional advocates that for a reasonable fee will help you navigate the paperwork honestly and help you know key items from doctors to include.
Be honest with yourself that you will most likely die before your child, and you do not want the burden put on a sibling. Group homes are not perfect …..but you cannot offer social circles that a group home does like day hab for adults. Special Olympics practices. Our son even works at Special Olympics warehouse part time. Medicaid pays for doctors visits, but your child can stay on your insurance long term in most cases.
He’s home for weekend visits, 2 weeks at holidays.
I’m no expert, I do have PTSD and take a happy pill daily. I grieve over the fact that my son can’t marry and have a family because he sees kids he knew from high school doing those things. We talk through those things and focus on his special Olympics trips.
Last tip when adulthood comes, you need to decide if you should become legal guardian of your adult child to protect them. They can still vote, our son got his drivers license ( No freeways lol) Our son is on an emotional level of a 12 year old but can communicate verbally very well, can’t keep $10 in his pocket for 10 minutes.
We are truly all individually specially made by God for His purpose.
God bless you special moms and dads!
I have an 18 year old son with C-ACC (complete agenesis of the corpus callosum), ADHD, OCD, ODD and Tourette’s Syndrome. I have been grieving since he was a baby. He has met so many milestones but has an intellectual disability and school has always been a struggle for him. He has no friends and he is now feeling very depressed and won’t get out of bed. It has hit him that he has disabilities and he is not accepting it. We had him in a work program but his anxiety was so bad, he just wouldn’t go. He feels he’s in the way, he’s embarrassed and feels like a loser, he has no self worth or confidence. He says he wants to die. I have knocked on so many doors for help and he has been on so many medications. He sees the psychiatrist and a life coach to help with his confidence. I am worn out. My daughter is getting married this summer and I am not excited. I feel completely overwhelmed and alone. I worry when my husband and I are gone what will happen to him. I suffer from PTSD and depression. I don’t know what to do for him anymore as he doesn’t want to help himself. I cry a lot.
Thanks for sharing your story and being so open. It’s incredible for me to see the challenges others face, and it reminds me that we are not alone – both in the spiritual sense and in the sense that there is a huge community of parents that a fighting, worrying, crying, and trying each day just to make it to the next. Hang in there.