Often times when people are going through a difficult time in life the common thought is that we’ll either get through it, or it will become easier. Unfortunately, when it comes to special needs parenting, that just isn’t the case. Not only does it not get easier, I would argue that it just gets harder as time goes by.
Acceptance Helps…sort of
When the diagnosis initially comes, there is the period of grief we need to go through. In time we come to accept the diagnosis which can help our emotional and mental state of mind. Acceptance of the diagnosis can help, and make special needs parenting easier. However, the acceptance goes in cycles.
While we accept the diagnosis and the new reality for our family, we are still reminded by all the milestones our children don’t reach. Even though we’ve accepted the diagnosis, the wounds can often be reopened.
Personally, this happens when I see babies sitting up on their own, or taking their first steps. We have had years of physical therapy, countless surgeries, treatments and interventions. Ladybug is still not doing these things, which keeps the sting of the diagnosis fresh.
So while acceptance of the diagnosis can help us move forward, it only makes parenting a special needs child easier for a short period of time.
Our Children Are Getting Bigger
There is only one thing our special needs children have in common with all other kids. They are growing, and they grow fast. The problem arises when our children’s independence doesn’t grow with them.
Most children gain independence as they grow. They start to dress themselves, climb in and out of bed, brush their teeth, bathe themselves and so on. Our children with special needs, however, may never accomplish these basic skills to give them independence.
So the problem we face as special needs parents is that our children are getting bigger, but their level of needs remains high. This, of course, means that as we go down this special needs journey, the difficulties associated with caring for them increases.
the problem we face as #specialneedsparents is that our children are getting bigger, but their level of needs remains high Share on XLadybug turns 8 this week. She still depends on us for everything. Every lift, transfer, shower, change of clothes, meal, drink, even playing with toys needs our assistance. (think nursing only we don’t get to go home at the end of the shift) She is growing and these tasks are getting more difficult with her growth. I fear the day we will no longer be able to be her caregiver.
So you see special needs parenting doesn’t get easier in time. Even if we’ve accepted this reality, it doesn’t get easier.
We Are Getting Older
Parenting special needs children is draining. Like incredibly draining. This life will place demands on you in ways you never dreamed. The demands are both physical and emotional.
Just like our children are growing, we are also aging. Our physical abilities to care for our children decrease in time. Our kids get bigger, we get older. Their needs increase, while our ability to provide care decreases. You can see the problem this poses.
Our kids get bigger, we get older #specialneedsparenting #specialneedsmom Share on XMy husband and I have both had back problems and other physical ailments that have required chiropractors and lots of ice. (yes we take precautions and do proper lifting techniques)
I would argue that for many special needs parents, we are aging at a faster than normal rate. This is of course due to the physical toll we go through simply caring for our children.
I was actually discussing this with a friend the other day. This friend thought I was in my mid-forties, I’m only 34. See my point?
No, Special Needs Parenting Doesn’t Get Easier
Add these three points together and it’s pretty easy to see that special needs parenting doesn’t get easier with time. Even if we have the best and most positive outlook on life, the truth is that this isn’t easy. It will get more difficult with each passing year.
My advice to special needs parents is to find respite and practice self-care. I know it’s difficult to make yourself a priority and not feel guilty about it, but it needs to be done. Self-care is NOT an option. Trust me on this, I’ve been spending a lot of time in therapy learning this lesson the hard way.
If you’re not a special needs parent but reading this to better understand, thank you. You are a true friend. We really value you taking the time to try to wrap your head around this special needs parenting life we live. If you’re wondering what you can do to help, please ask. Special needs parenting really does take a village.
Hey thanks for writing this, I just turned 49 yesterday, my 9 YO sp quad severely gorgeous daughter also requires 100 % care!
Gee do I feel it, as a single mum – Im wondering how much longer I can do it for too! but the alternative (supported care in an old age facility) is too awful to consider….. what and how do we do it??
Oh Kate, single special needs parents have a special place in my heart! I can’t even begin to imagine how much more difficult this road would be without the support of my husband. I hope you have other family willing and able to help you out. Prayers to you both.
Hi I am a parent to my son george who is special needs yes it is hard work but he is treated like my other children it is the most rewarding precious thing that l have been chosen to have a son with special needs you can either sit and mope or get on with it l still put my make up on hair done it hasn’t changed my life it’s made my life for the better it’s hard work appointments etc but you do this for your children without special needs my son smiles at me and my heart melts the hard work forgot about don’t dwell to much on the hard work or you miss the good times so doesn’t sleep much it is very hard and nobody can understand like a parent who’s son and daughter as special needs but there are far more rewarding things in life than the hard work it is you childs alive x
Love the attitude. My son is 26 and yes there are days I feel drained driving here, driving there, but I wouldn’t change things and if that’s what I need to do to have him have aS normal a social life as others his age, I will do it. He’s one of the happiest young men I know. Every accomplishment makes me proud.
so true Rose! Isn’t it such a blessing how our special needs kid are so happy all the time.
So very thankful that you have found it this way. Very common misconception that I have a hard time hearing! Special needs kids are NOT happy all the time. Mine is 47, has same desires as “normal” people – would LOVE to be independent, drive, have a regular job (something simple like McDonald’s is too difficult), gets tired of being informed that he cannot do ____. Wants to be married, have a family, and all other “normal” things in life. This can also make being the parent of a special needs person EVEN more difficult. Yes, he is a blessing – but hurts this momma heart when he can’t do what his peers are easily doing. So again – I DO NOT agree that “they are happy all the time”. A total misnomer.
Yeah the hard part is real, that not withstanding a focus on the existing Grace makes tenders even the toughest part ordinary… More Grace to mothers with a special needs.
Oh how I understand! I’m sister to a special needs adult (69 years old) brother. I gained legal and physical care of him when our mother passed away 15 years ago. He has regressed rapidly as he has aged, both mentally and physically. My husband, and myself, both have pretty severe health issues.
Every single day there are challenges, but I wouldn’t change a thing. He has taught me many things. Unconditional love. Never give up. Kindness. Not to sweat the small stuff.
He’s been there forever, always in my earliest memories growing up. Always protecting his little sisters. Walking us to school, holding our hands, but never attending school himself. He’s never known anything but family caring for him. I’ll do it till the end, or there comes a time that I can’t. I am not really great at the self care thing, but I’m getting better at it. Your article is spot on. It doesn’t get easier. It gets more difficult every single day! But we carry on….
Oh Donna bless your heart for choosing to carry the torch for your late mother. It’s one thing to step up as a parent when your child is diagnosed, it’s another to step up when the individual isn’t your own child especially when you grew up with it and knew what you were getting into. Your brother is fortunate to have such a selfless sister! Praying good health for all three of you! And you’re right, our special needs family will teach us so many valuable life lessons.
Love and admiration to yourself and hubby Donna . You are truly admired by most!!💕
Pretty much hit the nail on the head. I try to be positive but sometimes it feels good to peel the layers back and live in the truth. It’s really hard to be a sn parent.
It is so hard. I know it’s hard to find that balance of acknowledging the truth, letting yourself feel your feelings but stop yourself from camping out in the negativity.
I’m a 58 yr old grandmother who lost her special needs grandson on Jan.4-17, he was 100% dependent on his mother and myself, we had lots of help from all my family but it took all and I was still worn out. I feel God took our little boy to make our lives easier, but I would gladly be tired everyday to have him back. To all special needs care givers you have my respect because no one can begin to understand how hard and demanding theses precious gifts are. Each of you hang in there, hold them tight you never know it might be your last night, and I will pray for the strength you need each day. Love you special needs children. I’m lost without mine.
Cathy, I am so sorry for the loss of y our grandson. I agree, I would rather be tired all the time than loose my daughter. Praying for you and your family during this difficult time.
Hi my son is turning 13 years old this year and I’m a single parent on my own. He’s full timecare and he and I are prisoners in our own home. I don’t get any restbite at all and am feeling very emotional when the school holidays come, that’s when day yo day will get a lot worse as his moods and behaviour will become unbearable.
Single special needs parents are my heroes Janet. I couldn’t imagine doing this without the support of my husband. I pray someone will come into your life and give you the helping hand you need especially during summer break.
Where are you guys living? Surely there is support available
I should never have clicked on this article. I thought maybe it would have a twist at the end. It is full of negativity, which makes me sad for you. This is coming from a mother of a special needs child who is 100% dependent on me. As I write this I’m watching her get her weekly aquatic therapy. I would suggest focusing on the joy your child brings you, it surpasses the hard moments.
Hi Hollie, I’m sorry you felt this post was full of negativity. I of course love my daughter and find joy with her each and every day. I would not trade her for the world. However, that joy does not take away from the reality that special needs parenting is extremely hard. This post was intended to bring awareness with the truth, as raw and difficult as it may be. I’ve also written a post about the blessings that come from special needs parenting you might enjoy https://raisingtheextr.wpengine.com/blessings-from-special-needs-child/
I agree with Hollie completely. I have both an autistic and a neurotypical child and while raising kids is hard PERIOD, raising one is no harder than raising the other. They both have good days and bad days. They both have things they excel at and things they struggle with. I am raising them both with the understanding that being different is GREAT and what the world needs more of, is acceptance.
Our daughter is 19 and having a positive attitude helps us cope in every day routines. However, family doesn’t understand our life is different. VERY DIFFERENT from normal. Without the help from my loving and caring husband I don’t think I could do this alone. My heart goes out to all the single SN parents. May God bless you in everything you do.
We are getting older and we just recently got respite arranged, this has been a blessing for us. An extra set of hands for a few hours or a night out, is just what we need to recharge our own batteries. Your article hit the nail on the head for us. Hopefully the future will find us all a lot happier and healthier, so that we can be there for our children. Thank you.
So glad you were able to get some respite arranged!
So true my own son is 18 and love him so bits, but I’m getting older tired and trying to sort out his future, paper work never ending but would not have it any other way, at the end of the day we know them best and trying to find right support is always hard, people do not stick around for long, they go on to other careers but I know no different and would not have it any other way now . Everyone keep up the good work and always train other people about your knowledge because there are some good people out there willing to learn
Yes, wouldn’t trade my daughter for the world and I’m always willing to teach someone willing to learn 🙂
Amy, this is all so very true. My profoundly disabled daughter is 16 years old…and 85 pounds. We’re blessed to have nursing care to give us a break. It’s a unique struggle, but a blessed one. Hats off to you for all you accomplish!
Hats off to you too Angela!
My daughter is 13 and has Down syndrome. I understand completely what you are saying when you speak of it being hard. As she gets older and bigger, picking her up hurts my back. She has bad attitudes and horrible tantrums. I have another daughter 13 months older that’s totally independent. But like you said even with it being extremely hard; and physically exhausting. I wouldn’t take anything for her. She’s my baby and I love her tremendously.
I try to remember this is a marathon and not a sprint. We have to suit up for this journey and I often tell people of typically developing children that you are preparing for your child to go to college and on their own. My family and I are preparing to care of our children for life. I had this very conversation with my brother who has an adult son of 34 that has cerebral palsy and we talked about the long term care for our children (my daughter is 12 with Down syndrome) it is mind boggling but we have to face this and plan for their future.
I’m a single Mom to identical triplet girls, two of whom are special needs. They are 31 years old now and I’m turning 65 this year. In the past I have broken my back, been pulled in every direction till I thought I would be drawn and quartered. I wear a back brace daily but it’s like being in an ongoing football game. I’m terrified the time is coming when I won’t be able to do this anymore. I have help but what will happen to them when I am gone? It makes me sick to think about.
when we’re gone – the biggest fear of a special needs parent. I hope you find the answers, and relief you need