Individual Education Plan Follow Up

Photo of Dear Son and Mr. H (his classroom aide) in the pool at summer school.

Several weeks ago I wrote a series of posts on, "How to Raise a Happy and Healthy Severely Disabled Child". As a follow up to that post, I thought I would share some of the comments that were included in the hard copy of Dear Son's Individual Education Plan (IEP) meeting that I received this week. Dear Son's IEP was in early March and is a meeting where a student's individual education goals are made and shared with the entire team. They also summarize the student's achievement in the past year in several key areas: academic achievement, social/emotional/behavioral functioning, cognitive functioning as well as several other areas. Many of the summaries demonstrate Dear Son's happiness and are a pleasure to read. Some of the comments that made me smile were:

-"He loves being part of the group and is always smiling when other are around."

-"He continues to track voices and activity and especially enjoys it when other students are misbehaving."

-"He enjoys being positioned where he can view the most activity."

-"He is very easy going and "goes with the flow" when the schedule is changed." (A change in routine or schedule is not easy for some disabled children.)

But my favorite comments were given by the Occupational Therapists when she had to list Dear Son's strengths. She wrote:

-"Very engaging and aware of others and his environment."

-"Gets excited about novel and preferred activities."

-"Laughs joyfully."

-"Has preferences and attempts to actively influence situations in the classroom."

-"Can really have a presence in the classroom."

His challenges were the things that he couldn't change such as being dependent for all self care and mobility and limited communication skills.

Overall, I have a nice young man who is happy and is a pleasure to be around. His teacher said that the students and staff really enjoy it when he comes to school and they all wish he could attend daily (he is only able to attend three days a week due to his endurance/medical issues). In addition, he is much like any other teenager, wanting to check out the action and laughing when things go wrong. I love the fact that he is an easygoing young man.

Photo of Dear Son at his classroom graduation party last year.

This IEP summary has been similar to nearly all of the rest of them over the past eighteen years (well, technically, he didn't start school until he was three, lol). While it may be true that some children have issues that even the best care and love can't resolve, I feel good that the hard work that Dad and I have done over the years has paid off. I tell Dear Son every day that I have the "greatest kid in the whole world" and I mean it. But to see things in print, still continues to make my day, even after all of these years.

Note: Dear Son is nineteen years old and attends a day program offered through the school district for developmentally delayed students 18 and older. Dear Son has intractable seizures, dystonia (movement disorder) and is severely developmentally delayed as a result of a random mutation of the ARX gene; he also has a progressive neurological disorder.

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

Section V: Advocacy and Compassion-Perhaps the earliest lesson I learned is learning to put myself into Dear Son’s shoes and doing for him and treating him as I would like to be treated. Sometimes this is harder than it looks because we aren’t used to analyzing every tidbit of our day through someone else’s eyes. Also, because they can’t speak, we often may not be aware that they don’t like something so we have to learn to view every action of the day from their point of view. Once we learn how to do this, we have to teach others to do the same thing. And that is where the advocacy comes in. We help teach others how to treat our children well. A side effect of this is that we also help build our child’s self esteem in that they see us fighting for them which sends the message to them that they are important. That’s a win for all of us!

1) Put yourself in their shoes. When you have a child with multiple disabilities, you have to put yourself in their shoes in every situation, so you know what to do. For example, if you are giving them a bath, you don’t want their back to lean against a cold bathtub. No one likes that. This was probably one of the first things I thought of. The list could go on. In essence, be kind to them. Do unto them as you would like to be cared for. Always ask yourself, how would I like to be treated? Or if they are recommending a medical procedure, ask yourself if you would allow it to be done to you, if not, then decline. Lots of people will recommend things, it’s up to you to be the best advocate and gatekeeper of sorts for your child.

2) Make sure they aren’t hungry. When children can’t feed themselves, you have to pay attention to the number of hours between meals. They have little stomachs so often you can’t let them go some 5-6 hours between meals. It’s easy to forget when they can’t tell you. When they are on gtube feedings, it can be hard too. I know for Dear Son, there are days when he wakes up at 3:30 or 4 a.m. If I’ve tried everything else and he still fusses, I know it’s because he’s hungry (he’s on 1250 calories a day) so I’ll start his feeding. I know if he’s hungry because once I start it, he’ll stop fussing. It’s not often that he wants it started early, but I pay attention to when he does. Another example is earlier this year. On school days, I start Dear Son’s feeding at 3:48 a.m. and it’s done around 6:30 a.m. or so. He goes a half day so he doesn’t leave school until noon and gets home around 12:25 p.m. and doesn’t get lunch started until 12:45 p.m. or so. That’s 6 hours and it was too long! I talked to the nurse at school and we agreed that on school days, she’ll give him ½ can of formula at 11:30 a.m. That way, he has something in his stomach until he gets home and I can feed him his entire lunch.

3) Learn to be an advocate for your child. How does this help your child developmentally? Let me give you an example. I taught a Parent Home Medical Organization (Parent HMO, a Dream Organizer product) class at a local facility for the parent support group. One of the mothers explained that the staff was unable to feed her child at school since the child refused to eat for them. The problem was that the child was difficult to feed however not impossible to feed. The mother had come to school to try to help but in the end, the child refused to eat for the staff the next day. Essentially, the child refused to eat at school, day after day, and would come home at 3:30 p.m., run into the house and devour everything she could. This was not right. The child was so hungry that she had to go to school all day without eating anything. The mother and I talked some more and I explained that she would need to go to the school every day at lunchtime (she didn’t work) and sit with the staff until they were able to feed the child. Sometimes, we have to go out on a limb for our kids. Sometimes, it’s uncomfortable. Sometimes, our kids have a lot of quirks like this little girl who didn’t want anyone to feed her but her Mom. But we have to go to bat and make it easier for our kids. It’s not right that the little girl can’t eat lunch every day. And it’s even harder when we as parents are pushed into the uncomfortable role of being their advocate. It can be really hard to stand up for them and if a person isn’t used to speaking up, even harder. I struggled with this in the beginning too for my own Dear Son. What I learned was that if I changed my perspective from seeing myself as Dear Son’s mother to seeing myself as Dear Son’s advocate, it would be much easier. I would imagine instead that I was paid to be his advocate. When I shifted my thinking to being his advocate, it was much easier to fight for anything for my best client. That helped me a lot. Learn to be your child’s best advocate so they don’t have to be hungry all day or whatever the case may be. Children can’t learn if they are hungry. Give your little ones a chance.

4) Set health goals. It’s easy to go with the flow when you have a special needs child. After all, there are so many appointments. Instead of being reactive, learn to be proactive. Figure out what steps you can take when your child begins having issues and have a plan. Set health goals. For example, my goal for Dear Son is to go one year without hospitalizations for pneumonia. I am working very hard to keep him healthy and well and so far, he has not been hospitalized in six months for pneumonia. I have a distinct plan written out on all of the things that I will do to help prevent pneumonia. In addition, work with your doctor to find out what you need to do. For example, when Dear Son sounds congested, I need a plan for the nebulizer-how often should treatments be performed for example.

5) Let them know that you want the best for them and are rooting for them. I have a few catch phrases that I use and I tell Dear Son all the time. They are:

"Where you go, I go." I tell Dear Son all the time that wherever he goes, I go. I use whatever example there is, meaning if he has to go to the hospital or whatever. What this means is that his Mama will be there to guide things, to speak for him since he can not and to make life easier. He always has a big smile on his face when I tell him this. He knows I will make things easier for him. I often follow this catch phrase by using an example for whatever situation that we’ll be in. He always knows I have his back.

"We go together like peanut butter and jelly." I tell him this as if it were meant to be. We are better together. I want him to know that no matter what happens to him, he will always have a guardian angel at his side and that we were meant to stand together. I want him to have no fear and to understand that he is not a burden but a blessing to me and that together we will conquer it all.

My philosophy is this-I want to be the best mother and the best advocate for Dear Son. I treat him as I would like to be treated, if I were disabled. I treat him as if he were the greatest blessing I would ever receive in life, because he is. When people see how you treat your child and that you want the absolute best for them, one of two things will happen: 1) They will get on board and do the best and right thing for them. 2) They will go out of their way to take care of them. Another funny thing will happen, you will always get great service. People are busy in their jobs today and sometimes they have to cut corners. They don’t cut corners for the kid whose mother will be watching over them and whose mother will make the staff accountable. I am not suggesting that you be an ogre or that you are not courteous in any way, but rather, when people know that you are watching, they treat your child as they should be treated.

Section VI-Life Lessons. These are things that have taken me a while to learn but also allowed me to grow personally.

1) Ask for help. You may be confused as to how asking for help benefits your child. Asking other people helps the child and it helps you. It helps you in that it’s less stress since you don’t have to do everything. Less stress for you equals better sleep, better health and allows you to focus on the most important things. For the child, it’s great because it gives them interaction with many people and that’s good for them. Having a lot of people care for them, help them feel loved and cared for. For example, now that Dear Son is older, it’s a lot of work. Dad helps out by picking up all of Dear Son’s prescriptions, buying wipes, accepting delivery of supplies and picking up anything we need during the week, since I can’t get out of the house with Dear Son. At school, I have the nurse who cares for Dear Son, listen to his lungs each day, so that I know if he’s getting pneumonia. I also have them do other things such as massage his legs and other therapies. I have his bus aide help me with his outerwear (clothing) while on the bus. I have talked to him to make sure that Dear Son has his mittens on and scarf covering his mouth before he gets off the bus; I explained Dear Son’s prior history of pneumonia and how he can’t clear his airways, so now the bus aide, gladly helps. The bus driver, knowing Dear Son’s medical history, pulls up in our apartment driveway so that Dear Son has limited exposure to the cold. People want to help but sometimes you have to explain to them what they can do to help you. Asking for help and accepting help are still the two hardest things for me to do but I am finally learning to do both of them a little more, now that he is older.

2) Be willing to put yourself on the line for them. Ten years ago I made a difficult decision. It was really the only one that I could make however it was by far, the most challenging. Shortly after I got divorced, I decided to sell my house and move to be closer to work. I was having difficulty finding younger workers to come into my home (to babysit) that were reliable and that could take good care of Dear Son. I made the difficult decision to sell my house and move closer to my job. My house sold within days and closed a month later. I wanted to take my time to find a home so I rented an apartment. Six months later, my job ended due to a massive corporate layoff. I interviewed for new jobs however they were too far away and would require that I hire people to come into my home and get Dear Son’s medications and get him off to school and get him off the bus. At that point, his medical needs began to change and I realized that even if I could afford to have staff to do these things, that I would never be comfortable with that. What if they didn’t show up? Then what? What if he didn’t get his medications on time? There were so many variables that I finally gave up and decided to stay home with him and work part time. I took a 95% pay cut to do this. Please understand too, that we just don’t have adequate daycare for severely disabled children. Had I had access to daycare like the majority of working parents of normal children, I may have been able to work full time, but closer to home, but being a single parent, my options were next to none. Sometimes, providing the best care is being there. That is just my opinion so please do what works for you. This is the solution that worked best for us.

And finally, it’s easy to become overwhelmed with the care that is involved in taking care of a severely disabled child. It’s a lot of work. I can remember stories from my mother on how hard my paternal Grandmother worked to take care of seven kids after her husband died when my Dad was only two years old. I don’t ever want people to remember me as a mother who had a burden in life. Instead, I always want to be remembered as the mother whose greatest joy and blessing in life was her son. I want my Dear Son to know that he is and will always be the apple of my eye and I hope I radiate to others that regardless of anything that is going on in my life, that my greatest joy is my Dear Son. When we shift our perspective from burden to blessing, we have the ability to offer our children amazing gifts in life. As you go through life with your child, there will be many opportunities where it will be easy to get discouraged. It will be up to you to be flexible enough to see through opportunities in a different light. And lastly, I always try to remember to look at life through my son’s eyes. I try to see what he sees, feel what he feels. When you do that, your own perspective is widened and you are opened to a tremendous internal growth. When I look at the person I was and look at the person I have become, I wouldn’t trade for a minute the new respect and compassion that I have for others. Seeing the journey of the disabled first hand, through my son’s eyes, have opened my heart in a way that is forever changed.

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.

You can read Part I of the series here; Part I focuses on laying the foundation and getting organized.

You can read Part II of the series here; Part II focuses on building their self esteem, learning to communicate and mothering tips.

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.

You can read Part III here: Part III: Advocacy and Compassion, Life Lessons and the Conclusion of How to Raise a Happy and Healthy Severely Disabled Child.

You can read Part I here: Part I-Laying the Foundation and Getting Organized.

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.

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

Over the past few weeks, I’ve been writing this series on how to raise a happy and healthy severely disabled child. It took weeks mainly because I've had to fit in writing in between my most important job of caring for Dear Son. What started as a simple blog post grew into a series of life lessons and helpful tips that I learned along the way. My hope is that other parents of severely disabled children may find some of these tips useful in raising their own child. I do not profess to have all of the answers nor is my journey far from over. I can only share what I have learned from my own Dear Son and hope that you may find some of it useful in raising your own child.

This series will consist of three parts: Part I is dedicated to laying the foundation in terms of giving your child the best shot at life. It also covers the basics of getting organized and things to make your life easier. Part II is devoted to building their self esteem and communication. We build their self esteem by making them feel good about who they are and by helping them learn to communicate, both in understanding what we say to them and letting them know that they are heard so their needs will be met. Included in this section are tips on mothering-how to calm their fears as well as what their behavior is telling you and finally how we can be their best cheerleader in life. The final section talks about how we can be emphathic to their needs and show compassion towards them both in our actions at home as well as learning to be an advocate and teaching others how to relate to our child. I sum it up with life lessons and talking about the challenge and of raising a severely disabled child and how our perspective can pave the way to a more enjoyable life for ourselves and our children. So here goes...

PART I

Nineteen years have passed, since Dear Son was born. Dear Son, a gorgeous young baby, had a rough start, turning blue in the first twenty four hours of birth and then having seizures the very first day. I remember holding Dear Son and having him turn blue, and thinking that something wasn’t quite right. I asked my husband, Dear Son’s Dad, to call the nurse and he brushed it off thinking that Dear Son would be fine. I persisted and called the nurse…a week later he was released from the hospital and we were sent home, they said he was fine. There were other signs over the next few weeks that things weren’t quite right and finally at around the ten week mark or so, the seizures became more frequent and more apparent and our lives were forever changed.

Back then, I remember feeling woefully inadequate, not sure of what to do or how to do many things. I had a baby that didn’t meet any milestones, not only for the first year, but for a very long time. But the one thing that I knew for sure, what that I loved this baby more than anything and I was determined to do whatever I needed to help him be all he could be. At that time, I wasn’t quite sure what the future would look like, but with all of his challenges I knew that I needed to make sure that he felt good about who he was. I wanted him to have good self esteem. I wanted people to see him first and his disabilities second. I wanted people to love him, to adore him and for him to be happy. I wanted him to give and receive love. I wanted for him, what you want for any child…you want them to be happy and to feel good about who they are.

Fast forward nineteen years, and you can see the results. I have a happy and loving child who is a pleasure to be around, enjoys people, makes friends easily and genuinely feels good about who he is. He does not have nor has he had any behavioral issues. If you were to read over his teacher’s comments on his report cards, you would be hard pressed to find anything negative but instead read glowing comments about what a pleasure he is to have in class, how hard he works and oh yes, that infectious smile. That isn’t to say that there aren’t things that I could have done differently, but rather, that I did a lot of things right.

I thought it might be interesting to share them with other parents of severely disabled children. My goal is that perhaps some of these tips will make it easier for other parents and for their children. In addition, I’ll try to use examples to illustrate the concepts and also try to put them somewhat in the order that I learned them or implemented them.

Section I-Laying the Foundation-In this section, I talk about the key elements for raising a severely disabled child. These tips focus on being in the right place to help maximize your child’s development and to give them the greatest chance for success.

This is the outfit that Dear Son wore on his first Super Bowl Sunday in 1992.

1. Seek great medical care. Around the two month mark, I noticed some odd movements and on Super Bowl Sunday, took Dear Son to the emergency room. He had been having seizures and to make a long story short he was hospitalized for a few days and had an EEG done. The EEG was horrible. It was the first one that I ever saw and there were markings on the paper EEG that looked as if a child had scribbled as hard as they could from one side of the paper to the other. I didn’t know a thing about EEGs but my gut told me that this was probably not normal. We saw an adult neurologist who prescribed an adult medication (I didn’t know this at the time.) and set up a follow up appointment for three weeks. When Dear Son continued to have seizures at the hospital, I asked for a referral to a children’s hospital. At that time, I didn’t have any knowledge of the medical system and wasn’t even sure of what I was asking. Remember, this was twenty years ago and before the internet and back then, there weren’t as many disabled children, like there are today, or so it seemed. Anyway, they contacted the insurance and referred us to the best pediatric neurologists for seizures. They transported him by ambulance immediately and our journey began. (Back then, most PPO networks didn’t even break out physicians by pediatric specialties!) Dear Son was diagnosed, started on ACTH Therapy and was hospitalized for 3.5 weeks at Big Academic Medical Center. Over the years, I’ve learned that it’s important to have medical personnel who sees kids like ours. So the rule I invented was this: Your child should not be the worst patient the doctor sees that day nor should he be the worst (in medical terms) patient that he has in his practice. If he is, then you are not at the right place for your child. Ideally, you want a physician who has pediatric experience and who sees patients like your child all day and who has patients with severe disabilities and severe medical issues in his practice. In other words, you want a physician with experience with kids like yours.



We sold our house in another state and built this one to be closer to the Easter Seals. We made changes to this home to accomdate Dear Son's disabilities. The builder made one change and raised the foundation 8 inches to eliminate the front step in the walkway. Also, all doors were changed to a 36 inch width to accomodate a wheelchair. Our home was featured on the front page of the Big City Newspaper at that time, regarding custom changes our builder was willing to make.

2. Move to where you need to be. When Dear Son was born, we lived in a state that had very few resources for children with disabilities. While I could access good medical care, there weren’t any therapy places that were close. I asked our pediatrician where the best place was for therapy for Dear Son and he told us. As a result, I sold our house and we moved our family within ten minutes of the Easter Seals and never looked back. Children with severe disabilities need all of the advantages that they can in life. Do your best to put yourself and your family in the best place for them to achieve success.

Section II-Get organized. One of the first things you’ll need to do is to get organized. The sooner you can do this the better. I developed these things over time and they have served me well. Getting organized has several benefits: It allows for faster and better medical care for your child, especially in an emergency since you can communicate the information faster (plus you won’t forget it the stress of an emergency). Second, it reduces stress for both you and the child. Stress can be a huge factor in a weakened immune system. Not only do you need to focus on keeping your child well, but you need to look at the long term aspect of learning things that will keep you in good health. And finally, being organized helps our children be less stressed since they don’t have to worry. We may never know what goes on in their little minds, plus they aren’t born with the capacity to think and reason like we do, so we need to make their lives easier.

1. Be prepared. I have said this before but you need to create an emergency sheet, complete with diagnosis, allergies, medications and emergency numbers. If they are on a lot of medications, I keep a second sheet with the medications written out by time of day, so at 6 a.m. Dear Son takes these meds and doses, at noon, he takes such and such and the list goes on. Being prepared means keeping an emergency bag with medications, diapers, etc. basically anything you need to feed them, give medications or to change them. The emergency bag should be on the wheelchair at all times and go with you wherever the wheelchair goes. The purpose of being prepared is so that you can be ready for an emergency with your child. Having an emergency information sheet allows your child to get faster and better medical care. The goal of being prepared is so that you can offer the best care for your child and make your child comfortable. At school, this means that taking the time to make sure there is an extra feeding tube in his emergency bag, means that if the tube breaks at school, your child can still eat and doesn’t have to wait for you to show up at school with the new tube before he has his lunch. If you are taking a longer drive and it’s near lunchtime, take his medications and some food in case there is an accident on the highway, the kind where you are stuck in traffic for three hours. That way, if the unforeseen happens, you have their medications and you have avoided a disaster. Ditto for medical appointments near lunch. I take meds with and then give them at the facility so I don’t have to worry about making it home on time to give medications. Medications at proper intervals keep your child comfortable. If I have learned anything, it is, always plan for the unexpected.
   
2. Allow enough time when getting them ready. I have a little tool that I use that makes my life easier. I only wish I would have realized it earlier. When I get Dear Son ready, whether it’s ready for an appointment or just getting him ready for school, I allow plenty of time. I get everything prepared the night before-get bags packed, lunches packed, wheelchair inside and ready to go for the next day. On the day of the event, I use the 15 minute rule. I allow 15 minutes per task. For example, when I get him ready for school in the morning, I allow 15 minutes to get his meds (preparation and giving them), 15 minutes to get him dressed, 15 minutes to get him in the hoyer lift and in his wheelchair, 15 minutes for grooming and 15 minutes to get his coat/scarf/gloves on for school. That way, if anything else comes up in the morning, I have enough time built in and I don’t have to rush.


3. Pave the way to make their day easier. One of the things I do at the beginning of every school year is to type up a list of things that would make caring for Dear Son easier at school. This includes information about feeding him, changing him, location of emergency supplies, etc. It should also include little nuances or for kids who can’t speak, what their vocalizations mean. For Dear Son, he might vocalize to get them to “hurry up” and feed him faster. On the first day of school, I send this letter to the teacher. They tell me that it’s really helpful and that none of the other parents send a letter. The letter gives them information that helps them take care of Dear Son. Yes, they could do it without my letter, but it makes for a smoother day for Dear Son. Also, it gives them some guidelines. For example, I am a single mother and can’t always run to the store that evening. When I get a note that they need diapers, if I didn’t have an extra package, that might mean I’d have to go to the store. Instead, I tell them to send me the note when Dear Son is running low. That way, I have a day or two to get the diapers they need. It makes all of our lives better. I get them the diapers they need, Dear Son doesn’t run out of diapers at school and I don’t have to run to the store after working full time all day and then get Dear Son dressed and to the store for a diaper run.

You can read Part II here: Part II of III: Building their Self Esteem, Learning to Communicate, Mothering Tips

You can read Part III here: Part III of III: Advocacy and Compassion, Life Lessons and the Conclusion of How to Raise a Happy and Healthy Severely Disabled Child.

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.