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.
- 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.
- 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.
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.
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.
- 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.
- 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.
- 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
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.