Tuesday, February 15, 2011

How To Raise a Happy and Healthy Severely Disabled Child-Part II of III

Section III-Building their Self Esteem & Communication-One of the key elements to raising a happy and healthy child is building their self esteem but also helping them learn to communicate. It means helping them understand language as well as finding way to help them recognize and communicate their needs. If a child can not communicate their needs, there will most always be behavioral issues. They need to be able to communicate their wants, their needs, to let people know when they are afraid, when they feel pain, etc. Sometimes, for children like ours, you may see inappropriate behaviors that have nothing to do with the actual need. For example, a child may kick a wall to get your attention so you will change them. The child will most often choose the easiest way for them to get your attention. Do not fault the behavior without first figuring out an age appropriate alternative behavior that they can do easily instead.
1) Talk to them.It can be awkward when your baby/child is small and when they are non-verbal, to talk to them. Often times, there is no response at all and it feels like a one way conversation. Talking to your child is one of the easiest ways to build receptive language which is nothing more than understanding language that is spoken to them. Our children are often in their own little worlds so we need to make our world, exciting and fun so they will want to be involved in it. Your conversations with them should be fun, upbeat, singsong like (helps increase memory) and they should describe what you are doing, or what is going on. If you are getting them dressed, you might talk about putting on their coat and mittens to keep little hands warm (I used to say we need to put on mittens because “little parts freeze fast!”), etc. You would talk about why they are getting dressed and where you are going. You might talk about who will be there and how much fun it will be. Be engaged with your child and talk all the time to them. This helps their language development. A therapist once told me the best thing I could do was to talk to Dear Son. After that, I never stopped, lol. Understand too, that the transition from their world to our world may take a long, long time. We never know what will click with our child. For my Dear Son, all of the talking helped him increase his receptive language. It wasn't until he was in a daycare setting at the age of ten years old, that I can say that he was honestly in our world 100% of the time. He was ten and the kids were pre-school age but he loved it. He loved the action, he loved when kids got in trouble, he loved it when kids played with him, etc. Our world was finally better than his and he was in a good place medically for all of that to come together. My point is that you have to keep trying to get there.
2) Listen to them. Even though your child is non-verbal, they still communicate with you. They do it with their eyes, by looking at something they want, they might do it by vocalizing, they might do it by moving their arms or legs but basically, they do whatever is easiest for them and whatever will get your attention. Learn to listen to them and respond to them to build their self esteem. We all need to be heard and when a child who needs their diaper changed fusses, that’s a very good thing. It means they are aware they need changing. Go and check them and then tell them that you are glad they let you know that they need to be changed. I do this in several ways. For example, years ago, Dear Son would vocalize when he needed to be changed. I would come in and see his diaper was wet, then tell him that I was glad he let me know. What is important about this example is that you want your children to know that they need to let other people know what they need/want and you want to reinforce this behavior. In addition, you want your child to know when he/she is wet or needs to be changed because you don’t want them to get accustomed to not having their needs met or accustomed to not knowing what is going on with their bodies. It takes a certain level of awareness to know when you are wet and need to be changed. Be aware that they let you know in many ways. For example, when Dear Son was a baby, he cried when he was wet. As he got older, he vocalized when he was wet, then later on he would squirm when he was wet. A few years after that he would kick the wall when he was wet (and kick it faster and harder if I didn’t get there fast enough, lol). When he lost his ability to move his legs/feet, then he would vocalize he needed changing. In the past two years, with his progressive disease, he doesn’t have the lung power to vocalize very much so he vocalizes once and that’s about it. It’s very soft so you have to keep the house quiet so you can hear him. My point is this-it may change over time but he still has the awareness. I think that is key. Another example is recently when Dear Son got out of the hospital in 2009 after that long hospitalization. He came home and was extremely weak, sleeping all the time. He might be awake on briefly but I made sure to talk to him and tell him to let me know when he is wet and needs to be changed. That doesn’t mean that I don’t change him or check him to see if he needs to be changed but rather, what I wanted was for him not to lose the awareness that he needed to be changed.
Dear Son in elementary school with his girlfriend, both are non-verbal but their expressions say a lot.

3) Create an environment for success. I am not sure what to call this exactly, but here is the gist of it. For children with multiple disabilities or moreso for children with milder disabilities, the children are classified or fit into particular therapies or classrooms based on these disabilities. Some parents, try to get their disabled child into the highest functioning classrooms or therapies thinking that this is best for their child.
Dear Son and his girlfriend on his birthday at school. Teacher is on the right.
For some, in milder cases, they don’t want the child to “appear” disabled and be in those classrooms. In other cases, I think the parents feel that if the kid is in the higher functioning classroom, that their child will “pick up” the skills. I believe both approaches are wrong. For example, if you place a child in a classroom where every child functions above your child, it may end up being demoralizing for your child. Imagine a scenario where your child is the “worst” at every skill they do in the classroom. Would that help them be successful? Would you thrive in a classroom where you were the worst at everything?
Dear Son and Mr. H at summer school swimming in the public pool. We've been fortunate to have good placements in school.

Imagine for a moment playing racquetball or whatever sport where everyone you play is better than you. Would that really make you better to lose every game? Would it make you better to play with players who are a lot better than you? No. Instead, place your child into a classroom where they are in the middle in terms of abilities.
Dear Son pushing the bowling ball onto the ramp during a field trip at school.
You want there to be some children that have skills above them and some below them. This allows your child to win sometimes by being the best at something. We all need to win in life. You will always be the best judge of where your child needs to be. It may mean you need more information at times to do this.
Dear Son age 3. He started school around this time.

For example, when Dear Son was three years old and entering school, they were at odds about where to place him-did they place him in the school with kids who were severely disabled and couldn’t move at all, or did they place him in a higher functioning classroom? I asked to visit the classrooms where they wanted to place Dear Son and also asked to see a classroom with some higher functioning kids and one with some lower functioning kids. I visited several classrooms and was able to pick the classroom that I thought Dear Son would fit in best. Notice that I followed their recommendations, but just gave my input on where I thought he would benefit the most.

Although Dear Son couldn't sit in a regular chair, he could sit in a rocking chair with a high back and balance his head on the window to look out. He also used his feet to move the chair around.

4) Change Yourself Before You Change Them. When Dear Son was around five or so, I transitioned from part time to full time employment. Shortly thereafter, Dear Son started a new behavior. Every time I tried to lift him out of the car and into his wheelchair, he would bear down and try to sit on the ground. By this time, he was getting heavy for me and it was hard to get him to sit into the wheelchair/stroller instead of the ground. On one particular day, it had been raining and he was trying to sit on the ground. We had been to speech therapy after school and I had just stopped for an errand at the local mall and was running in with him to get some make up. He refused to sit in his chair and wanted to sit on the ground. When we got home that night, I thought about what had happened. I had started working again and my normal routine was to work a long day, come home and relieve the sitter, eat something and then play with Dear Son. That’s a long day for a little boy! Instead, I thought that maybe his behavior had to do with me and perhaps I wasn’t spending enough time with him. The next day, I changed my routine. I came home, scooped him up on my lap and gave him hugs and kisses and talked to him. He scooted off my lap when he had enough and I prepared my dinner. After dinner, I took him out for a long walk. His behavior stopped virtually overnight. The only thing different that I did was to change the order of what I was doing.

Dear Son enjoying a haircut.
Instead of giving hugs and kisses after I ate diner, I did it before I ate dinner (FYI-The babysitter had fed Dear Son dinner before I came home.), The only other change was taking him for a walk or swinging with him on the swing set. I shudder to think that today, many parents would take him to a therapist to get rid of the behavior and more often than not, give him drugs. Learn to listen to their behavior. The actual behavior may not be the issue, but rather, the behavior is the means to get your attention.
His first birthday! Aww...
5) Celebrate who they are! It’s easy to get discouraged as a parent of a special needs child. They are a lot of work and there is always so much to do. It seems like you never get caught up with appointments.
Dear Son at a theater outing enjoying the luncheon. His dress shirt had a special coating that repelled spills which was great to repel his drooling. You can see the dystonic movements in his hands.
It seems like they will never meet and get caught up on their milestones. It’s also easy to get discouraged…you child will never be the smartest, they will never be the fastest, they will never be….well, you know. Enough already! Instead, focus on what they do best and celebrate it. This was one of the first lessons I learned. I remember asking myself that first year, what do I have? What I have is a beautiful little boy, that had perfect beauty. That was the inspiration behind one of my first blog posts called, “Don’t Hate Me Because I am Beautiful”. It’s definitely a must read. Over the years, I learned to celebrate the fact that Dear Son had a great sense of humor, that he had a really good laugh that could start the whole elevator laughing. He had an ability to go into a room and get along with everyone and make them smile. I learned that we are not defined by our disabilities, they are just part of who we are. Celebrate who they are and be proud of them.
Dear Son couldn't sit on his own, but could sit on our sofa with a cushioned back for support.
I always preferred taking photos of him without any wheelchair. I wanted people to see him, not his disabilities.

Section IV-Mothering. Mothering a severely disabled child isn’t much different than mothering a regular child but it throws us for a loop since the child can’t vocalize their fears or their needs. As a result, we find ourselves guessing as to what our kids are thinking/fearing. Another challenge we face is that our child’s developmental age and chronological age can be very different. While other parents face the challenge of their kids growing up too fast, say eight going on sixteen, we face the opposite challenge of our eight year old acting like a two year old. 1) Create ways to reduce stress/pain for them. When Dear Son was a baby, he had to undergo a ton of blood tests and all kinds of hospital procedures. In the beginning, I used his pacifier to soothe him. For lab tests, I started using a musical toy and eventually a musical toothbrush (it was portable and small) to hold up and play while they drew blood. Next, he enjoyed his talking Barney and his Bedtime Barney that played music. He would snuggle up next to Barney when he wasn’t feeling well or was in pain. Today, when he has a seizure, he likes his music on this musical carousel on (he'll stare at it to let me know) to help relieve the pain or he’ll bury his head into his Barney. Dear Son’s Dad and I often sing to Dear Son to help relieve pain for him as well. My point is this, find ways to help reduce stress for them.

Dear Son's nursery, back in 1991.

2) Talk to them about what is going on and try to calm any fears. When I was going in for back surgery, Dear Son needed to stay at a respite type facility for two weeks. I was quite nervous about this since I worried about whether or not he would get his medications on time and I worried about making sure that he would lie on his side at night so he wouldn’t choke on his saliva. I had been talking to Dear Son about staying at the respite house and that I would be coming to visit him and that he’d be coming home as soon as I was better. But the night before, I sat down on his bed to talk to him. I said that I was having back surgery and that he’d need to stay at the respite house but that it was good news since he didn’t have to get anything done! I said that he was just there while Mama went in for surgery. We talked some more about what would happen and at the end, he leaned forward and kissed my hand. He seemed so relieved! When I told him that he wasn’t going to have anything done, he seemed relieved. You never know what they are thinking so you need to think ahead about what they might be worried about and try to calm their fears. When you child is non-verbal, it’s harder because they can’t tell you what they are afraid of or ask any questions, so you need to be a bit of a mind reader.

Bowling in high school.

3) Be age appropriate but sensible. It can be a real challenge with severely disabled children to be age appropriate. Technically, they can lag so far behind in their developmental milestones that it’s hard to forget their chronological age. For example, they can be 8 years old and you are still changing diapers and purchasing their toys in the 12-24 month old aisle at Toys R Us. As a result, it’s easy to think of them as little whether you want to or not. Sometimes, your brain is still registering them as an infant or toddler or whatever. Anyway, when Dear Son was in the seventh grade, the teacher talked to me about Dear Son’s bibs. I had been purchasing the pull over the head terry cloths bibs for Dear Son since he was born. Dear Son never had head control so trying to tie a bib around his neck when he was floppy was not going to happen. As he got older, say after five years old or so, it was harder and harder to find these bibs. That should have been my first clue however I didn’t want to get his clothes dirty. There is nothing worse in my book than a kid with a dirty face or dirty clothes. Yes, there are places that sell bibs for adults and older kids but most of these were plastic and tied about their neck which was hard to do. Anyway, his teacher told me that now that Dear Son was in the seventh grade, that the kids don’t wear bibs. She said that I can send a towel if I like and they would lay it over his shirt. And that’s what we did. It can be hard as a parent when you have a disabled child because you work so hard to find practical solutions to your child’s issues and when you find something that works, you stick with it. Also, because the kids don’t speak and because they are in smaller classrooms with other disabled kids, there isn’t any peer pressure going on and the kids can’t tell you what the other kids are wearing, etc. so you kind of miss all of that. Or at least, that’s how it was for me. Anyway, I was glad his teacher told me about that and it served as an important lesson for me to learn to be more age appropriate. One other area where I was not age appropriate was changing Dear Son. Often, I’d change him wherever I could and looking back I realize that I needed to be more age appropriate and make sure his privacy was secured prior to changing him. For example, if it were a family gathering at Christmas, I might change Dear Son at the back of a room, since it was easier than lifting him to another area. While no one was around, I am sure it would have been a little nicer to take him to another area with a little more privacy than to change him in an area where another child might happen to walk into, etc. For school, I now ask where the changing area is for him and make certain that there are privacy screens, that they are used, that he’s not in front of a window, etc. I also check it out when I make random visits at school, to make sure it’s being done. Sometimes, people forget but it’s up to you to make sure it’s done. One other note is to pay attention to their feelings. I remember one occasion when Dear Son was ten or so and I took him to our local park. It was a hot day so I purchased a small ice cream for him to enjoy. As I went to feed him, he saw other kids his age and refused to eat anything. When the kids left, he allowed me to feed him again. He didn't want the other kids to see him being fed. On another occasion, our family went to a restaurant. I decided to feed Dear Son before our (Dad and I) food came. Well, again, Dear Son refused to eat because he didn't want anyone to see him being fed. I felt so bad...here was this little boy refusing to eat because he didn't want others to see him being fed. Of course, the minute we got home, he devoured everything. We have to be sensitive to their needs. Often times, it seems funny how they can understand some things and not understand others.

4) Be positive and upbeat. In December of 2009, when Dear Son was released from the hospital, we knew that he had a long way to go towards healing. He had a hard time breathing and you could see that something as simple as sitting in a chair was downright exhausting. Dear Son’s Dad and I would always try to be really upbeat when we were around Dear Son. We’d talk to him and try to have fun and try to do anything we could to make it the best day possible. We would sing to him, we would talk excitedly to him and try to make a big deal out of anything that we would do with him. Dear Son has always had a tough life. He’s had severe physical and severe mental disabilities making it tough for him to do things in life. As a result, we work hard to try to be as positive and as upbeat as we can in caring for him. Dad does a great job any time he talks to him. He’s always excited and teasing Dear Son and telling him how fun it’s going to be. I sing to Dear Son every morning and tell him what a great day it’s going to be or talk to him about the fun things they will do at school. My thinking is this-some days, it’s just plain hard for them to get through their day. Being positive and upbeat is just something you bring to the table to help your child get through their day.

Note: Dear Son is nineteen years old and suffers from seizures, dytonia and severe developmental delay as a result of a random mutation of the ARX gene. In addition, he suffers from a progressive neurological disorder.


tonyandann said...

wow, thank you so much for all the time and thought you put into this post...it's an invaluable resource.

Eileen said...

Great stuff DM - more book fodder! There are loads of parents of so-called normal children out there who need to know this! Talk to your kids - whether special needs or not. That's how they learn and know they are loved.

Dream Mom said...

Thank you both so much for the nice comments. I worked on and off for about three weeks on this post; it took so long mainly because every time I'd get started, I'd have to jump up and take care of Dear Son. In the end, I think it made it a little better because I had time to think of more things that I thought were important. Eileen-You ar so right about talking to your kids. Oh, how I wished mine could talk back! I'd love to hear his voice and his thoughts!

Anne said...

I love, love, love your no. 3! I agree with you 100 percent. I fear we may be in the minority, but I don't think that makes us wrong. Not one bit.

I have a seven-year old with Down syndrome. As an infant he had many health concerns, and he also had open-heart surgery to correct a congenital defect when he was only six-weeks old. Before his second birthday he was diagnosed with leukemia and underwent treatment for that. All of this is to say that my son had more than your garden variety Down syndrome issues with which to contend.

Anyway, last spring we decided in which first grade class to place my son. All of my peers were pushing for full inclusion, but I didn't believe what they were saying for all the reasons you mention here. My son could have transitioned into a typical classroom as he would have been cognitively able to do so, but we chose a classroom for kids with mild delays. I just knew it was the right fit for him.

And I'm so glad I stuck to my guns! My son has had the best year. He loves school and his teacher. He loves his classmates (there are only five children in his class... how's that for individualized attention?). He has already plowed through the first grade reader and is moving onto the next one. He's also learning math and progressing very well with handwriting. I mean, I cannot emphasis enough how successful this school year has been for my son.

I'll never know for sure if my son would have experienced this much success in a typical classroom, but I suspect he wouldn't have. I'm so pleased with the placement decision we made.

What I'm trying to say is... it's not about labels. I hear so many parents of children with special needs harping on about how they don't want their child labeled, but these parents also seem to be the ones who are doing the labeling. For them, special needs classrooms aren't good enough; they believe their child needs to be mainstreamed at all costs. It's as if we parents of children with special needs have become our own worst enemy.

Anyway, I'm so glad to find another mother who thinks as I do. :-)

Dream Mom said...

Oh, Anne, I love your comment. You are so right and when our kids are successful we know we made the right decision. Thank you so much for your lovely and heartfelt comment. I am glad your son is enjoying school.

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