Earlier this morning my husband and I were catching up on our DVR’d show’s before he had to leave to go to work. One of the show’s that we’ve grown fond of is Donnie loves Jenny. We really only got involved in watching it because of course it came on right after Wahlburgers and frankly we love that show. This mornings episode (okay technically last nights) really hit me hard, so hard in fact I almost teared up! I had to choke back the tears when they were watching the video’s Donnie had of when he became a father and how loving the entire family was around him and his kids. Jenny then tells Donnie that she really didn’t have much video of her son Evan because what was she going to video tape? I can’t remember the exact wording and my husband has already deleted it and it’s not on youtube (I checked) but it was pretty much her saying what was she going to video tape, her child being different, sick even if you will.
She told Donnie about a time she took Evan to the zoo and would say “Look Evan, look at all the monkeys” but because of his illness he was more entranced by the shape the fence made and how it all connected then he was the monkeys. Jenny talked about the guilt she felt for thinking there was something wrong with her son, and at that moment I wanted to cry. I have felt that guilt for 17 1/2 years now, and even though to me he’s perfect in his odd ways to the world he’s an outcast.
In the next scene she and Donnie are face-timing with Jenny’s mother and they start discussing how Evan would spend hours just spinning wheels, like if he had a car he would flip it over and just sit there and spin the wheels for hours and hours. My son, Jonathan had his own “uniqueness” to his way of playing. He would push everything. Literally, just push it. That’s how he played. For Christmas when he was 1 1/2 we bought him one of those ride on Lil Tykes 4 wheeler. We sat him on it and showed him where to put his feet and that if he pushed the little pedal down the 4 wheeler would go. He would never ride on it. He would always get off and start pushing it. We would put him back on it and show him again but he would get frustrated with us and get off and go to the back of it and start pushing it.
One of the toys my son loved most was Hot Wheels, he had hundreds of them (still does). The other toy was Lego’s to which he did and still does have hundreds of them. When he played with the Hot Wheels he would line them up in a single file line that spanned the length of the entire house sometimes and he would start at the beginning of the line and would push one of the cars an inch or two, then he’d go to the next car and push it the exact same distance. He would do this until he reached the end of the line and he’d walk back to the beginning and start all over spending hours pushing these cars from one side of the room to the other only to turn them all around and do it all over again. He was more then happy just being by himself and pushing his toys around the room or the back yard. Sometimes becoming so excited with some new way he’d figured out how to push something that he’d have to come run and tell me all about it and beg me to come see. So I would go and watch my baby go back into his own little reality world and push the toys and be so proud of himself for what he was doing.
On occasion I would set up play dates with other boys that were his age that we had met through little league or pre K, but those never turned out very well, and we were very seldom ever being asked back. It wasn’t because my son was mean or misbehaved while there, but only because he kept to himself and the other “normal” kids just didn’t see the fun in playing with someone like him. After each visit we’d usually get that awkward “Yeah, we’ll call you and set something up” and I’d know that meant no, we won’t call you. There was one woman who was always so very nice to me and my family, always inviting us to do stuff. Her and I are still friends today even though we live more then 1000 miles apart.
It’s very hard to be a parent of a child that most of the world see’s as “damaged” and doesn’t really want to get to know. It’s heartbreaking to know that your kid is walking around the school’s with a bulls-eye painted on their backs and that anything they say or do is going to be ridiculed by some little shit whose parents have not done very good job’s in raising them to be tolerant of those that aren’t “normal”. It’s even harder to remind yourself that you are the adult and smacking the shit out of some little punk who has made your baby cry or turn even more inside themselves is against the law. The hardest thing though, is being a parent and trying very hard to not feel guilty, that maybe it was something you did while pregnant that made them this way. Maybe I ate something that had a chemical in it, or maybe it’s that I myself is damaged and I’ve passed that onto my child. The guilt eats you up, then you start feeling even more guilty because you feel guilt that you don’t believe your child is perfect and every parent should always feel this way.
When we decide to have kids we usually pray that they are healthy and have 10 fingers and 10 toes and 2 eyes. We try not to picture the worst of things that can happen and when we get to hold that perfect bundle of joy in our arms for that first time, oh how the tears fall. For me, my heart filled with a love that I never knew I was capable of feeling for anyone. He was a huge 8 lbs 15 oz and 21 inch long direct link to my heart. I promised to love him forever and take care of him and protect him no matter what. I wasn’t given an instruction manual on how to raise a child who would later be diagnosed with Aspergers Syndrome, ADHD (severe), ODD (again severe) and OCD traits. I knew something was wrong by time he was 6 months old. He stopped napping during the day, and if I forced him to sleep he would sleep for 15 mins and then would be up until 3 or 4 the next morning and he sleep until 6 and be up and going again all day. I was exhausted and the guilt ate away at my soul. We saw doctor after doctor, some of whom wrote papers for the AMA on how severe his disorders were. We started medications at age 5 and that just compounded the guilt.
My son is now a senior in High School. He is still a loner but he does have a few friends. He’s not motivated to do much of anything in life and I feel he will have to live with us forever because he will be unable to support himself. I hope that I am wrong but unless something changes for him right now he’s happier in his room alone and away from the harsh world we live in.
I see that the world is changing towards kids like mine, but it’s slow in coming. Every day I read a story about how some random person stood up for someone like Jonathan and it makes me happy to know that these stories are happening. The guilt I have will most likely always live within me, I will always wonder if it was something I did or didn’t do correctly. I’m still learning as I’m going, no one has written that manual yet!
My son will never be the prom King, he won’t be the star quarterback for the team and he’ll never be voted most popular but so what! How many hundreds of kids across the USA get those every year? My son has something most kids these days don’t, an imagination. He may go far in this world, further then anyone every thought he could. I just know that no matter what he accomplishes in life, I will always be standing behind him, cheering him on being his #1 fan! It’s okay to be different, in fact it’s a good thing. Being the “same” as everyone else is boring as hell and boring is one thing me and my kids have never been accused of being!
Shanpagne's World 