Thursday, March 22, 2007

Red Rover, Red Rover, Let My Friends Come Over

Dear Son was getting ready for school, when I told him about our company. His physical and occupational therapists would be coming by after school, to assist me in working with his Hoyer Lift, as I had been having trouble in my attempts to use it. His Occupational Therapist had contacted me two weeks ago, to answer some questions for me about a therapy form and had offered their services. Dear Son was quite excited, that someone he knew, was visiting our home. He smiled when I told him they would be coming over after school and I knew he was excited.

I got him off the bus and the Physical Therapist was just arriving. Dear Son smiled at her and got really excited as she followed us inside. The Occupational Therapist arrived minutes later. Once inside, I showed them his normal after school routine as I placed him in his rocker. He was so excited to “show off” and rocked for them as well as demonstrated the transition to the rocker. I explained to them I supported him for the transition into the rocker and how he communicated to me that he was done. I said that I have to sit right by him because once he’s tired, he can just slide right out of the chair in a second and crash to the ground. When he gets tired, he gives me a “flick” of the hip. That’s where he takes his hip and moves it slightly, as if to say he’s done. You have to “get it” and then remove him promptly otherwise, it’s not safe. I explained the hip “flick” as I call it and Dear Son did it right on cue. The Physical Therapist commented on Dear Son’s receptive language and how he understands so much of what goes on. We then showed them Dear Son’s room, and the space challenges of using the Hoyer Lift to get him out of bed and into the wheelchair. (It was determined the mesh piece to lift him was too small and unsafe to use so we need to order a different one that provides more support.) Dear Son was just so proud. You could see he was happy to have someone over and happy to show them his home.

One of the issues for him, and I am sure other children like him, are friends. It’s not that Dear Son doesn’t make friends easily, because he does. He’s the type of kid in the class that they would probably vote as “most popular” among both the kids and the staff, if that were possible. He has an easy going smile, a good laugh that makes everyone laugh, a handsome face and is the first one to get everyone on their way to a good time. The real issue is doing things with friends, and having friends come over to the house.

Many of Dear Son’s friends and classmates, are in wheelchairs and many don’t speak. Even for those that do, they have other issues that warrant inclusion in his particular classroom. His classroom, is typically one that has exclusively special needs students, as their needs are typically best met in this type of classroom as opposed to be included in a regular classroom (Certainly this is a big issue and there are pros and cons regarding inclusion; I won’t expand on that here but in Dear Son’s case, this has worked best.) The problem comes in that more often than not, they don’t have their friends come over. There are many reasons for this, most boil down to the fact that it’s just plain too hard. It’s hard to get them from place to place, they have special needs that make it difficult (maybe they have meds or g tubes that require feeding at certain times, etc.) and that’s if someone is available to take them there and back. It’s compounded by the fact that if you don’t know a child, it can be hard to watch two of them. Heck it’s a lot of work just taking care of him. It’s also challenging because many of these children, have different communication methods, especially if they are nonverbal. You have to learn how each child communicates his needs-eye gaze, equipment and body language to name a few. As a result of all of these issues, more often than not, their friends just don’t come over, making school their number one place for social interaction.

Taking them on an outing is a lot of work as well. It’s not easy going to a restaurant, some can’t eat, some are g tube fed, some can’t handle the noise in there, etc. Or they have other issues, like the one child who is autistic I believe, and goes to the grocery store with the classroom and wants a “particular” apple, like the one someone else is purchasing that is already in “their” cart, and no other apple will do. It’s a whole different world than one most of us are accustomed to. It’s also hard handling one child, let alone more than one, unless their parent goes along.

The bottom line is that Dear Son doesn’t have friends over and because he can’t speak, he doesn’t get to talk to his classmates on the phone, or instant message or via e-mail. We take for granted our social interactions and they are a big part of our lives. Heck, we don’t even consider them as blessings, because we take them for granted. But for these children, they have nothing. If they don’t have siblings, their lives can be quite boring at times. I always think that is why they enjoy disaster so much or when things go wrong. At least it’s exciting.

I also have to wonder how they comfort themselves when they feel fear or when new things happen at school that make the phones ring off the hook for regular kids. How do they handle these things? Certainly Dear Son thinks about things. I know that because when I talk to him about things he is worried about, he gives me a kiss on the hand when I hit the nail on the head.

And what about prayer? The Wheelie Catholic, one of my favorite bloggers, had a post recently about how her disability affected her spirituality. I commented on how I wondered what Dear Son did when he was afraid. For many of us, we pray. What do they do? How do we teach them about prayer and comfort in times of need? Certainly I pray with Dear Son but I don’t know that Dear Son knows his prayers.

There are so many issues at times in caring for the disabled that we forget about the “normal” things, the things that are important in our lives, the things that bring pleasure to us. And as they grow, and the physical challenges of managing him get exponentially harder, it becomes an even larger challenge.

And therein lies the power of Barney. I wrote a post a long time ago titled, “A Letter to Bill Gates” about the power of the Acti-Mates Barney and how it became Dear Son’s best friend and is a friend to many Special Needs children. Even at fifteen, he still talks to Barney, just not as much. I am reminded of this every time I take him to the Pediatric Neurology Clinic at Big Academic Medical Center. There is a picture in the examining room of the Velveteen Rabbit. Under the picture is the phrase, “When someone loves you long enough, you become real.” I often think of Dear Son and Barney when I read that as I am waiting for the doctor to come in the room. Maybe someday, we can do a better job of providing for disabled children, first by having daycare to allow parents to work and daycare for the social interaction, and then resolving other challenges to the disabled, that we can focus on ways we can make their lives truly better, not just in terms of functionally better, but enriching their lives. Enriching their lives by making it easier for them to do the things that we do, going out with our friends or having them over and having a good time. Maybe that’s why they are called Special Needs children; they just don’t get what we take for granted.


ERC said...

Hi. I was just curious, do you have Miracle League team in your area?

I've participated in a fund rasier for our local Miracle League and it is just so amazing to see those kids out there, having fun and doing what the "other" kids get to do.

I usually lurk here, but I do enjoy reading your blog.

Michelle said...

DreamMom, has DearSon ever had a Make A Wish trip? Wouldnt it be nice for him to go and meet Barney and see that he IS real? The folks at the Barney town in Universal Florida sure go out of their way to make kids feel special.
If you have not yet had a MAW, can you possibly email me and let me put you in touch with someone near you who can make it happen? I would love to help make it a reality. mome23kjnc AT adelphia DOT net

Karen said...

Just popping in to say hi from a link on another disability blog. Would it be possible to connect your son with a big buddy who also uses a chair?

Anonymous said...

I have been a ''SPECIAL NEEDS'' person since birth....nearly 50yrs. ago, and I found that a ''SPECIAL NEEDS'' summer camp was extremely benificial to my social skills......So much so, that I attended summer camp `til the age of 19.

Ryn Tales said...

Dream Mom, Great post. I worry about the same thing with Ellie. She doesn't have friends over either and is nonverbal. I don't have any answers but similar concerns. Thanks for so beautifully articulating this issue.


Dream Mom said...

Thank you for all of the wonderful comments and suggestions. Erc-I haven't heard of them but will check it out. Michelle-Thank you for the offer. I'll keep your e-mail for future reference.

ERC said...


Here is a link regarding the Miracle League.

This is the one in my neighborhood, but you can find others via links. I hope you have something like this in your area. We did one motorcycle ride fund raiser for them and it brought tears to my eyes, watching the kids playing and having a great time.

yarn shop girl said...

Wow! you hit the nail on the head! My little one is non-verbal, has lost all purposeful hand use and can no longer walk,,but she loves to socialize! She loves being with other kids and we are blessed to live in a small town that has embraced her. The issue of friends has been a concern for us for some time. Thank you for sharing your thoughts and for making me feel that I am not alone.

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