One of the greatest things that parents and caregivers can do for their children with SMA is raise them with the belief they can become independent and self-sufficient if they want to. They can dream of having a good job, having a family, and living on their own. The job thing is something many of us with disabilities are still fighting, but having a family and being independent is something I see people with SMA do, all the time! This is actually really good advice for parents with kids with any kind of disability. Even if you or your loved one doesn’t have a disability, this is worth reading. Anyone can have a disability at any point in their life, so it’s always good to be prepared, in case it inevitably happens to you.
Communicate to Find Their Interests
Make sure you have a way to communicate with your child. I know some kids with severe Type I are not verbal. The child may get left behind educationally speaking if they lack the ability to communicate. It can get very expensive, and I wish there were more organizations that helped to pay for assistive technology, so all children with SMA or other disabilities could have access to communication devices. They desperately need this so that they can communicate with the world. Most children with SMA have average or above average intelligence, so it is cracking the code to communication that can really open up the world to these kids.
Communication is so important because it will allow you to find out what this child is interested in learning to do. You want to give your child the chance to try anything they want to try, and the first step is finding out what that might be. Once they decide, do not tell them they cannot do it. Do not tell them they are incapable. Tell them you will figure it out together. Maybe it requires some accommodations or ingenuity to make it wheelchair accessible and disability friendly. I have friends with severe disabilities who have found ways to rock climb with assistance, dance, and various other “physical” tasks. I graduated with a film degree from an extremely physically demanding program, and I can barely move my arms when I’m sitting in my wheelchair. I just adapted and had someone work with me to be my arms, for me! There are ways to adapt nearly anything.
If your child is unsuccessful, do not tell them “you told them so” or make them feel bad. Simply encourage them to keep trying to find what works for them! Eventually, they will find something they are good at and that they love! Your encouragement will also mean the world to them and keep their self-esteem high! You are your child’s best advocate until they can advocate for themselves. So, never stop fighting for their independence!
Encourage Their Interests and Independence
You need to encourage your child to troubleshoot their own problems. My family was often involved in the problems I had, so when I went to live on my own, I had no idea what the heck I was doing. You need to be there for your child enough, so while they know you are there for them, no matter what, it still allows them to make mistakes. You would let an able-bodied child stumble and fall along the way to independence, so it should be no different for your child with a disability.
You also need to support their interests. If they are artistic, and you can afford to put them in art classes, let them take the classes. They may just flourish, and find the kind of career they want to do, for the rest of their lives. Encourage them to learn how to use computers, the right way. If they are interested in technology, help them to learn coding, graphic design, video editing, or some other tangible skill. There are plenty of classes online that can teach them these things, and I have many friends who have found decent careers, in spite of having SMA, in the tech field. It also is a job that often is not too hard for people with SMA, due to the many advances in assistive technology that allow people with disabilities to use computers.
Teach them to Advocate
You should teach your child how to advocate for themselves. I grew up during a time when there was no Internet. I did not really have any adult role models with disabilities, who I could talk to and you can help me navigate the world from my wheelchair. I had to learn everything on my own, with no help from anyone else. I’ve made a lot of mistakes I wish I could take back. I wish I knew what I know now. Nobody ever taught me to advocate for myself, so I had to learn how to do it on my own. You may not always be there for your child, so who is going to advocate for them when you are gone?
Oh, and Ask Adults with SMA to help!
I highly recommend talking to adults with SMA. Many of us are willing to help in any way we can. We know better than almost anyone because we’ve lived with SMA our entire lives. We understand all the barriers society places in front of us, and many of us have found ways to work around those barriers. We know what we need to do to become independent and self-sufficient. We’ve had families, jobs, went to college, and lived on our own, so we can help teach you how to help your child attain these things, if they want them.
I also highly encourage you letting your child talk to adults you trust, with SMA. Some of my greatest memories from MDA camp were talking to adults with forms of MD. I had been told my whole life I may die before adulthood, so seeing them living active lives was eye opening. It gave me hope for my future. Chances are, your child will be able to ask these adults questions they desperately need to have answered, that they are too uncomfortable to ask anyone else. We have an Ask an Adult with SMA group on Facebook (it’s closed, so it is private, but you can find it by searching for it). I encourage parents to join it, and older children to join, as well. There are plenty of adults willing to answer all of your questions about living as an adult, with SMA.
College and Movement – Two Keys to Independence
Additionally, you should encourage your child to consider college, if that is something they want to do. More and more universities are becoming disability friendly. Edinboro in Pennsylvania, University of Illinois – Urbana-Champaign, UC Berkeley, Wright State, all offer a lot of support and most of them have support for PCA and nursing care. I have had friends live on their own in dorms with the need for 24/7 nursing care, who have attended school independently thanks to these programs. It does not matter if your child cannot move at all, has trouble communicating, has a trach or feeding tube, or requires a lot of assistance. These schools are designed to help people with severe disabilities live on their own, get an education, and live in the dorms if they want!
I also encourage parents to allow their children to use a power wheelchair if they can. I have a friend with SMA who cannot sit up, so she has a specially designed wheelchair that allows her to drive laying down. I have another friend with another type of MD who drives while laying on her stomach, with various parts of her body propped up. Thanks to technology that allows for more diversity in the development of wheelchairs that accommodate a variety of needs, your child can find a way to drive a wheelchair, and the independence they will gain will be incredible! They have wheelchairs you can drive with your eyelashes, teeth, tongue, cheek, and head! If there is a will, there is a way, so consider all of the options to get your child moving on their own!
Get your child into whatever program you can, so they can have PCA/Nursing Care. For most of us, that means getting on Medicaid Waiver. You may have to help your child apply for Medicaid as soon as they turn 18, if you make too much money for them to qualify. Once they turn 18, it no longer goes off your income, in the same way. This waiver service has income limits, but they can join the buy in program in most states, which will allow them to work and have care. You should find out the rules of each program, because every state is different.
Waiver pays for PCA/nursing care, which is often the #1 thing standing between a person with SMA’s ability to live on their own or not. That is why you want to get them on this program, as soon as you can. You also want to teach your child how to teach others to do their daily routine. Again, in the event you are no longer around, your child needs to learn how to tell others how to care for them. They will also enjoy the independence.
I do not want to tell anyone to ignore the doctors, but we all know that many kids and adults with SMA have proven the doctors wrong. No longer should you just take your SMA child home and love them. You should help them live each and every day to the fullest, and plan and hope for their future, no matter what! We are living longer and longer, and so we need to prepare for our futures. No matter what happens, your child will love that you cared enough to dream with them about their future, and encouraged them to reach for the stars!