Being a parent is never an easy job…says the mother of six. But when you are the parent to a special needs child that goes to a whole new level. There are doctors, therapists, counselors, SENCO (special educational needs coordinators) and a plethora of other ‘experts’ telling you how to do your job. You have meetings and appointments…sometimes one after and another. You are always tired, because if caring for your child is not enough, being told by just about everyone you meet what you are doing wrong will just plain old wear you out.
My journey with Emily began four years ago, but if I am honest I knew from birth that something was ‘different’ about my child. And after four years, we still do not know a great deal about her seizures, her behavioral issues or what the future holds. It is frustrating and (I’ll say it plain) depressing.
I am lucky though…I suppose. This is not my first time down this road. My twenty-two year old adopted son had an inherited disease called neurofibromatosis. When the social worker told us about him, she was not very encouraging. In addition to benign tumors that can grow on the ends of nerves, the condition is associated with learning disabilities. She was not sure that he would ever achieve independence. I spoke with him the other day. He has just been promoted to cook at the restaurant where he started out as a busboy. He and his roommates are thinking about getting a larger apartment too. Not too bad?!?
In this blog, I want to share with you some of things I have learned along the way in dealing with him, Emily and my other son who had childhood epilepsy. These lessons are not always easy…to learn, to live and too often to repeat over and over again, but they can save your sanity.
1) Trust your gut instincts. You know your child and what is happening better than anyone, doctors and experts included. It took me almost eighteen months and three serious seizures to get the doctors to even recognize that there was a problem. Even after I got the diagnosis of epilepsy, it took me another two and a half years to convince them that she was having seizures in her sleep. Your intuition is not to be taken lightly. If it tells you something is not right then get a second opinion and a third and a fourth…until you get the answers you and your child need.
2) Never give up, never surrender (Galaxy Quest 1999) – Following on the heels of number 1. I learned this one the hard way. During my journey with Emily, my confidence was so shaken that I actually began to believe the doctors about her night time seizures…until her school complained that she was falling asleep in class which triggered another EEG that caught a nine minute seizure in her sleep. I will never make that mistake again. Our number one job as a parent is to speak/advocate for our children when they cannot…with doctors, schools and other idiot experts that think they know it all.
3) Sleep/rest when your child does. Having a special needs child can sometimes be like having a newborn baby, especially in terms of the amount of care they require. At its best it can be exhausting, but to make matters worse some conditions and medications can result in sleep disturbances. If like my Emily your child is experiencing these sleep disturbances go back to the way it was when they were newborns. Right now with the increase in her meds, Emily has no sleep pattern (good thing we do homeschool or she would be truant). Sometimes she cannot stay awake past six or seven, then she is back up at nine or ten and does not go down again until midnight or one. Other times, she takes an afternoon nap and goes to bed at nine or ten. But however she does it; she always sleeps 13 or 14 hours per day. Sometimes I nap with her, sometimes I read/relax, but whatever I do…I rest. I know we are always tempted to do ‘more’ housework, errands, work, whatever, but DON’T.
4) Think outside the box. There are some adjunct therapies like vitamins, diets and even surgery that work for some children. And this goes for the rest of the things in your child’s life like discipline methods or education. For us, the decision to homeschool has been such an improvement in her behavioral issues. She spent so much time every day trying to ‘be normal’ that by the end of the day she was exhausted. Those last couple of hours at school was hard…she would never help pick up toys and the teacher/school was really unhelpful with recognizing that her epilepsy contributed to her behavior. And when she got home, she broke down…temper tantrums all the way home. By choosing the untraditional route of homeschooling we took the pressure off (lowered her anxiety) and our child is a different person.
5) Don’t listen to all those ‘helpful’ people that don’t know you, your child or the situation. Like I said when she was in school we had temper tantrums (lying on the sidewalk kicking and screaming) on the way home almost every day. One time I had this nasty old lady comment over my shoulder that my child was what was wrong with this country today. I lost it. I turned to her and told her…”My child has epilepsy and has seizures all night long. She stays tired all the time. What is your excuse” She huffed and said there was no reason for me to act like that. I told her there was no reason for her to say something so rude to begin with. Moral of the story…let it out. Stand up for yourself and your child. You will feel better.
Like I said, I know personally how hard it is to internalize this advice. Even after raising two amazing special needs children (one of whom no one expected to hold down a job or live on his own), I still find myself doubting some of my own advice. Parents of special needs children are often exhausted, stressed out and isolated. But like all parents we want just one thing…the best possible future for our children. And that is something that separates you from all those experts…you care for your child in a way that they never will. This makes you the ‘expert.’
Join me next week as I discuss ‘unschooling’ and why it may be the way forward for some special needs children. And don’t forget that this Tuesday, March 20th I launch the new weekly book review of resources for special needs parents with a review of The Explosive Child by Dr. Ross Greene.
Self-Directed Learning & Neurodiversity 