Category Archives: Seizures
March is National Disability Month as well as National Cerebral Palsy Awareness month with Cerebral Palsy Awareness day being March 25. A few weeks ago the reality finally set in that I have a disabled child. Super Mighty Max is a year and a half old (18 months old). The reality of him making progress to be a “normal or typical” child has finally set in. From hospital stays, choosing therapy services, going through the process of getting granted Medicaid and disability, to now going through the interview process for having an in home nurse. This process has not been easy nor fun, but I have finally realized Super Mighty Max is atypical. Everyone has a grieving process they go through in their mind about the expectation of their children. I, like you, if you have children expect your child to do great things. What we expect them to do, be like, have, grow, and learn ultimately no one expects to take care of their children for life. I have finally faced the reality that I have a disabled child.
I know you are thinking like really, Erica? You are just getting IT? But, you have been writing about Super Mighty Max for months and have been transparent about this process. You started a blog and have written about your thoughts here and here. I know. I know. I really do know. I like to think I’m optimistic (although pessimism sets in sometimes). I think all the while in the back of my mind I have been waiting, hoping, praying that Super Mighty Max would wake up and change just like that. That he would grow out of this diagnosis called Spastic Quadriplegic Cerebral Palsy. That he would start doing those things that kids his age do. That God would do something miraculous and he would be a bodacious into everything toddler.
But the Good News is (as my husband says often in his sermons), I have a Disabled Child.
Cognitively Super Mighty Max is a 18 month old. He cries when he wants attention. Loves being held and sleeping under you in your bed. Loves watching TV, but sometimes dislikes therapy or play time. But physically he is more of a 3-6 month old if I’m honest with myself. There are so many things I wish he could do right now. How much those things would make life easier. But then I digress and remember that its not my fault. That God made Super Mighty Max in his image and he has purpose on this earth no matter his ability.
I saw a post on Instagram that stated if you “Put a Go in from of DISABLED. It Spells: God is Abled.” See the picture is below.
God is abled. I know what he can do. I have prayed that God uses Super Mighty Max as a vessel to others, and that his disability would be a testimony.
Stay Super, Make Mighty Moves, and Be Blessed!
So, I’m sitting in Super Mighty Max’s pediatrician office as I write this. We are here for his 18 month well checkup. I get here, check in, and the receptionist hands me a questionaire to fill out. I take it and begin to fill it out.
I read through the first few questions and luckily there is a “Not Yet” column. The first questions were about his vision and hearing. The next set were about his fine and gross motor skills. I simply skim and just check “Not Yet”. Then we get to the questions above I looked at the headings for Problem solving and Personal-social and got upset. I felt like I was being punished for Super Mighty Max’s development. Trust me. I know I’m not. But to have to go through this process as if my child is a “typical” child is depressing. It makes me feel like it’s my fault and I’m not working hard enough for him to continue to develop these skills.
But we are working hard. He has physical therapy 4 x a month and occupational therapy twice a month. He is growing by leaps and bounds and I’m proud of the progress he has made. So, as the doctor comes in she starts to go through all of his specialists visits. I update her on his recent diet change and hospitalization. She then proceeds to look through the questionaire. I tell her I hated to fill out this questionaire every well visit. I tell her that it was torture for me to fill it out. She agreed that it wasn’t necessary, but wanted to make sure his early intervention services were addressing his development. We talk about his IEP/IFSP and what his physical and occupational therapists are working on.
We then discuss growth meaning height and weight. Super Mighty Max has grown 4″ in the last 6 months. But has actually lost weight. He currently weighs 23 lbs down from 26 lbs from his 12 month well check. Hopefully we will get some updates on feeding by mouth during his next gastrointestinal visit.
Stay Super, Make Mighty Moves, and Be Blessed!