I have been sitting and thinking a lot about this the past few months. What it means to be a parent or caregiver to a special needs child. I have my own, something I never in a million years would have thought that I would have to deal with. Both my husband and I are well educated, live a fairly healthy lifestyle, I exercised while pregnant, didn’t take prescription medications while pregnant or nursing, took all the classes, and read all the books. I had been a nanny for years before, had a teaching degree, and worked with hundreds if not thousands of children before having my first child.
So why should it have been surprising that I would have not just one autistic child, but two diagnosed and possibly another 3 that are undiagnosed? Well because..that is why, just because. I hadn’t seen it in my family, and at the time I didn’t see it in my husband’s either. My husband has ADD and dyslexia, which we knew of going into this. I was pretty sure that I would see the dyslexia as it has been shown to move down gene lines, especially to males. I have three boys and two girls. One boy and one girl have dyslexia and ADHD along with their Autism Spectrum Disorder (ASD) diagnosis. The other three kiddos all shown Sensory Processing Issues and more tickmarks for the ASD as well, but they handle life and school so we feel it isn’t necessary to get that diagnosis on paper. I don’t want the diagnosis to rule where they go in life. I only wanted the diagnosis if it meant that it would finally open doors for the kids in terms of help for school, therapies, and answers to questions that float like the elephant in the room.
We had no issues with the pregnancies and ultrasounds showed no abnormalities that would point to a specific disorder. When the first was born, I can remember hearing: he has fingers that will play the piano beautifully, he has the hands of a surgeon, he is trying to hold conversations already (at a few days old). We walked into parenthood with beliefs that our children would sail through life, be good at everything that they tried. They would be able to play sports, our house would be full of friends every day, horseplay that would result in multiple trips to the ER (because that is what boys do), and that school would be easy.
Here was our reality, our firstborn had colic so bad he screamed non-stop for the first three months…I mean 24 hours a day of screaming. Colic has since been linked to children on the ASD, along with other gastrointestinal disorders. Our first had nearly 100 words at a year old, knew all his colors and shapes by two years old, could read simple books at age three…and then it stopped. He began losing words to the point that we had to have speech tested. By five years old he couldn’t tell you letters or their sounds anymore. He repeated kindergarten because he could no longer count or identify numbers. By the time he was in first grade he was in intensive reading and writing therapy, learning his letters and sounds once again and how to hold a pencil correctly. We had testing and more testing to figure out what was wrong. He no longer looked people in the eye and conversations were strictly about trains or parts of machines. The doctors in Wisconsin said they believed that he could be on the spectrum, but once he would be diagnosed insurance would no longer cover therapies, medications and more testing. The same held true in Michigan. Even seven years ago states were allowing insurance companies to be exclusive about what they would cover or not cover, autism was not something they had to cover yet. We were lucky to have some really amazing teachers and aides in the schools we have attended over the years that allowed my oldest to grow in so many ways. He was finally diagnosed officially at 13 years old with ASD, Generalized Anxiety Disorder (GAD), ADHD, dyslexia, and dysgraphia.
You will hear when you have seen one child with autism, you have seen just that…one child with autism. This held true for me. I had taken a few classes in college on special needs. Autism was a short two month area out of all those classes. I “knew” what to look for and “knew” what it looked right, because I was taught this is what it looks like, XYZ. Anything outside of XYZ was something else and to move on in a different direction.
As a parent of now three children after my daughter was born I thought I “knew” what I was dealing with, after all my son had a lot of the classic traits. We went nearly eight years thinking that my daughter was bipolar, manic depressive. Something that we would be dealing with later in life with medications and therapy. The pediatricians all said there was nothing to do at the early age other than show her love, consistency and when the bottom fell out be there for her as a strong parent. At the age of seven my daughter had something done to her that no parent or child should have to deal with, due to the PTSD involved with this situation she was put on her first antidepressant/ anti-anxiety meds. Everything seemed to be getting better other than the night terrors. So we upped the dose and tried to move on. We moved to Florida and found a pediatrician right away who took one look at my baby girl and said this is beyond what I can handle and sent us to an excellent psychologist and psychiatrist in the area. It was with the very first appointment in the very first ten minutes we were asked, have you ever though that she may be autistic. Absolute horror struck me harder than anything ever before; not because someone was suggesting that something was “wrong” with my daughter, but because when I truly stepped back and looked I saw everything that I missed…every trait, every quirk, everything. Upon further testing it was resolved that she was not bipolar, but was autistic—just on a different part of the spectrum than her brother with her own unique issues to be addressed.
You are probably wondering how does she handle it all? I have to tell you that I grieved for the perfect child, the easy going child, the star sports star, the kid that never would be. I still have days that I have my own pity parties about how hard it is to do it all. With that being said though, my kids all have such amazing talents, convictions about life, motivation, and enthusiasm. They are the first to jump out and help someone in need, to see the other child on the playground that has no one to play with, and the first to offer some type of advice in how to accomplish something. They don’t hold eye contact well, they can not follow a stream of conversation that doesn’t interest them for more than a couple of minutes, they have extreme sensory issues about food, clothing, noises and the textures of everyday items; including pencils and paper. They are highly intelligent and are doing amazing in school in the subjects that they understand. My son is and high honor roll student every quarter and thinks anything less than 150% is failing. My daughter shows extreme talent in art and fashion. Both have friends and peers they care about. I don’t have the daily running through the house, rough housing, and trips to the ER. That is okay. I have to praise and find blessings in what IS, instead of finding grief in what I thought would be.
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