Tuesday, September 08, 2009

Growing Up Slowly: What Happens When a Disabled Child Comes of Age

Dear Son-Age 13.5 years old.
It was a few years ago, when Dear Son and I were sitting in the emergency room at Big Academic Medical Center, when it hit me. The ER was extremely busy that night, there were little kids everywhere with their Moms and seats were hard to come by. We had been escorted back to one of the rooms in the ER and we could see the open area in the ER well. It had approximately six different beds and the doctors and nurses were scrambling around to tend to all of the children in the ER. One child in particular got my attention. The child was around two years old or so. As I watched that little boy, it suddenly dawned on me that Dear Son wasn’t a child anymore, heck he wasn’t even a little boy. He was a teenager and growing rapidly. It hit me hard in a way. It wasn’t the fact that he was growing that was a problem, it was the fact that he wasn’t a disabled child any longer, but a disabled teenager. It snuck up on me.

To most people, that wouldn’t be a big issue. They would think that yes, kids grow and they aren’t small forever. But it’s a big deal of sorts when your kids are disabled. When Dear Son was small, I remembered one visit to the neurologist in particular. I don’t remember the office visit per se, only my reaction to what I perceived his life would be. I doubt it was anything that he really said but more of the realization that Dear Son’s issues were more severe than I anticipated and I wondered if I could really handle that. No one prepares you for a child that is severely disabled and at that time, I wasn’t sure that I was the best mother for a child like that. That didn’t mean that I wasn’t a good mother but rather, I didn’t think that I had any experience to prepare me to be a good mother to a child like that. That day, I went up to my bedroom alone and cried. I worried about what I would do. After a few minutes, I came downstairs and picked up Dear Son. I held him close to my heart and kissed his head and his soft brown hair. When I held him, I knew that I loved him so much and that anything anyone would tell me would not matter when I held him because I loved him and that those two feelings could not exist at the same time. My love for him would override that feeling of inadequacy about caring for a severely disabled child.

In the next few years, when things came up, I learned that it was better to not look too far ahead, where Dear Son was concerned. I had no idea of what life might look like with him and of course would not know how to handle it. I ended up dealing with life one day at a time and with blinders on, never looking too far in any one direction. It was easier to take care of him and not know what I was missing in terms of him having a normal life, and me too, and just concentrate on doing what I needed to do. It was a coping mechanism for me and perhaps for other Moms like me.

But that night in the ER it hit me. It was the realization that Dear Son was not always going to be a disabled child and that someday he would be a disabled adult. That was an important distinction. Disabled kids are cute, they can’t help themselves. You want and need to help them. But disabled adults, not so much. At least that is what I felt back then. I think it's harder for parents of special needs children because our brains still think of them as children since we do so many of those childhood or toddler tasks, from feeding them their dinner by hand, to changing their diapers, dressing them, etc. and then all of sudden you see them getting bigger or you see things getting harder, like lifting them, and your brain can no longer ignore those signs. Parents of normal children don't face those issues because they make changes all along. For us, our children change more slowly, if at all, which makes it harder.

As I faced the reality of him becoming a disabled adult, I wondered how would I reconcile this in my head? The issue of course wasn’t really whether the kids were cute or not, the real issue was whether or not I could handle him as a disabled adult. It was back to square one just like when he was a baby. How would I do things like give him a bath? How would I move him around when I can’t lift him anymore? What happens to him if I die? All normal questions.

Of course, I know all of those answers now. I learned that as Dear Son grew nothing really changed. If anything it got easier. Moving him from point A to point B could be solved with a hoyer lift. Giving him a bath is tough but Dad helps out with that. What is easier now is that I am confident and experienced. I know what to do. There aren’t medical emergencies where I don’t know what to do. It’s easier too because he has matured. Yes, I still change diapers and it’s harder to change them on a grown man but when I tell him I will change him in a minute as soon as I put my contact lenses in, he will wait. He understands when I talk to him. He is happy. He enjoys school. Overall, I feel like he turned out really great and I couldn’t be happier. In the end, you realize that there isn’t any difference in how you feel about them now that they are a disabled adult. You still love them, you still want the best for them and deep down, nothing has changed.

So why am I writing all of this? Because I got an e-mail from a dear friend of mine. We’ve never met in person but we’ve been friends for many years now corresponding by e-mail and occasionally by phone. Her daughter is severely disabled and is now growing up. She can no longer lift her up the stairs and in a year or so, neither would her husband. That fact, prompted discussions of the type of changes to make to her beautiful home, none of which would be beautiful. The real issue wasn’t the fact that changes needed to be made, but that her daughter was now in high school, soon to be a grown woman. The lifting, well, that opened the door that she’d be a disabled adult and all that went with it, meaning: who will care for her when they die, how will they do things now that she is larger and what changes do they need to make to their home now, none of which seemed very pretty. But through the tears, she remembered something I said, that Dear Son growing up, was easier. And she asked how I dealt with that, and how I do it now that he is full grown.

I wrote back and told her all of the wonderful things that there are about kids growing up and about Dear Son now that he is an adult man. I told her that in the end, nothing had really changed. After that, I gave her feedback on the changes she was considering for her house and then designed a new bedroom for her daughter; I sent her pictures of some possibilities and told her what types of things she might want to think about in terms of accessibility in the room but most of all, I made the room beautiful. She wrote back and was amazed at the changes. She said that I gave her hope and that she was finally feeling a little better that things were going to be all right. And some days, that is all we need. Some days, hope is good.


Mary said...

They do grow up...its difficult, I know, as they get bigger and heavier, while we get older and weaker, the challenges are great. My heart goes out to you and your friend...one day at a time is all I ask for...strength one day at a time. You are so caring and loving, I know dear son has the best life he possibly could have under the circumstances. Bless you, my friend! Mary

Catherine said...

I would love to read about your suggestion in making a lovely room for the young woman.

We are having both grandmoms (my mom and mil) move in with us. Mil is in a wheelchair so we need to keep her down stairs. Her house has also had to be rearranged so that she now lives in the living room. It is difficult moving someone into the living areas to give them privacy, take care of their needs and still look nice.

Dream Mom said...

Catherine-Send some photos to my e-mail address (dreammom90@yahoo.com) and tell me what types of things you need to have or what some options that you are considering. I'll take it from there, give you my suggestions for the room and send you an e-mail.

In her case, she gave me three options that she was considering and her thoughts. I gave her my initial thoughts and asked for pictures of her house. I selected the option that I thought was best and gave her reasons why and then drew up a floor plan for it using both furniture she had and also giving her some options on some other furniture to use. I also made suggestions in terms of where to add the bathroom and some accessible design options. Maybe I'll do a blog post on it.

Poppy Q said...

Dear Dream Mom,
I bet you are giving so many people hope in your beautiful writing.

My mum spent the last three years of her life trapped in her bed and room with emphysema. When mum and dads fridge broke down, my brother and I offered to go and buy them one. We still got a half hour lecture about what to buy them and a long list of instructions. I was 36, and he was 43.

Big hugs to you, dear son and wiggles.

ladesha green- morton said...

I am the primary caregiver of a 16 year old son h is wheelchair bound and has other chronic health issues. Ive been caring for him since he took sick at age two. As a teenager now,he is getting really big and heavyi am starting o have servere back pain and hard for me to walk. I can still lift him but iys getting to the point he getting to heavy for me. I do have a hoyer lift but thas thing is so complicated. I love my baby and will continue to care for him even if he is 60 years old. Its a hard job but thats my baby and God wont put to much on us that we can bare!

Dream Mom said...

Ladesha-Please start using the hoyer lift. I know it's not as easy as lifting him in the beginning, but you need to save your back. I too struggled with wanting to use the hoyer lift-then I had back surgery. I had back issues as a child however in addition to those issues, I ended up having three herniated disks from lifting my son. Prior to the surgery, I couldn't walk ten feet and I had to sleep in a chair. Start using your hoyer lift before it's too late. Get someone to show you how to use it-it can be daunting at first until you get the hang of it. Your son depends on you.

Bless you Ladesha. Thank you for writing.

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