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.