This person wants to share their story in dealing with autism. This item was emailed to this blog--AR
It was a little over two years ago I first heard the word Autism. My second child Gabriel was fifteen months old and we were desperate for help. He had stopped sleeping. He wasn’t talking. He had to be on top of (literally) me for almost every minute of every day. If he would get off my lap he had to be in arms reach. I had bruises up and down my arms because he had a need to pinch me (now I know it’s a stimulatory thing and he can’t control himself). We tried to take him to the grocery store and he would scream and fight. We took him to a birthday party for his great grandmother and he screamed so loudly we nearly had to leave the party. And if we tried to give him a bath… all hell broke loose. He would fight, kick, scream, and even bite us to get away. He acted like the water was burning him alive even if it was near to being ice cold. He wasn’t talking. He wasn’t interacting the way other children his age seemed to do. He couldn’t entertain himself for even two minutes at a time. We have an older child so we kinda just KNEW something was wrong but every time we mentioned a fear about him to friends or family we were told to just give him time boys develop later.
His pediatrician didn’t look at us like we were crazy. She was also concerned. We started the cycle of testing that would take over most of the next year of his life. First he had a hearing test which stated he had normal hearing. Then we saw a speech therapist that referred us for weekly appointments and to have an occupational therapist consult. And here is where the word autism came up for the first time. The occupational therapist told us in her opinion our son had serious pervasive developmental disorder problems also known as autism. She told us to go see the pediatrician. The pediatrician sent us to see a neurologist. The neurologist ordered an MRI and formal testing and evaluations to get an idea of where on the spectrum our son would fall.
It took a long time to get through all the evaluations and we answered a million and two questions about our son and his daily habits and his life. It was only a few months ago actually we were officially given the diagnosis. We had been told by every single doctor we had seen since it all to read all we could about Autism and to remember that no matter what our child was still our child.
I felt a lot of the time that maybe we were just imagining things. This was partly due to the fact everyone in our surrounding family acted like we were going overboard with doing speech and occupational therapy. They also felt we were letting our son run wild and without any parental control basically because we were too lazy to parent him. They claimed he was perfectly normally and acted like we just wanted extra attention from the doctors and such for whatever reason. We knew something was wrong. We didn’t know for sure what. We felt our job was to help our son no matter what people around us said and we still feel that.
Our son who was so perfectly normal was not included in invites his sister got to off with her aunts. He wasn’t welcome to hang out over at her house. No one could bother to ask us if we needed help. We could barely even get someone to watch him half the time to do things like our Christmas shopping. No one wanted anything to do with him. When we put our foot down about taking one child off and leaving our other one home and the fact it was causing him to attack his sister in anger and hurt her they stopped having anything to do with either of our children.
As he got more and more verbal ability from help of his speech therapist (my personal miracle worker I think) we started getting more control of his behavior. We put him on a medicine to help with his sleep and you wouldn’t believe the difference him getting six hours of solid sleep would make. The occupational therapist worked/works with him and helps us deal with the sensory issues. At times our son appears almost normal but very hyperactive. Other times he melts down and falls apart.
Recently he started the early school program for children with disabilities and he has had a lot of regressions and meltdowns. It’s almost like being back at square one sometimes. We have to take every day as it comes with him and some days we all are ready to just sit down and cry. There are many nights even now after I put all the kids to bed the first thing I have to do is sit down and just cry my eyes out because it was one of the bad days and I am beyond stressed.
Gabriel is now almost four years old. He is considered a high functioning autistic and we have a lot of hope for him in the future. I have to say some of the hardest moments we have with him have to do with public situations. People who can’t help themselves making comments about how we should control our child better or we should spank him to change how he is acting. (Think a meltdown after forty minutes in a grocery store that means he is either bouncing around the buggy semi out of control or sitting in the middle of the aisle screaming for no apparent reason… it really depends on the day)
We finally thought we had a handle on things when our third child was born during all the testing and such being done for Gabriel. We spent the entire pregnancy terrified about the possibility of another child with similar issues. We were given information about how common it was for a second child to be born with the same problems or even more severe ones. Our fears weren’t to be mentioned to family though. They didn’t want to hear that we were worried. They didn’t want to talk about how Gabriel was doing. They didn’t want to know what the doctors had to say about him.
Our pediatrician started watching Alexander from birth for anything off the mark. By six months we had huge red flags of a problem. The biggest one being he was refusing to be held to breastfeed. He couldn’t handle me holding him that closely and would scream and fight to get away. Effectively he self weaned himself in an effort to be left alone with a bottle so he wouldn’t have to be touched. By nine months old we realized he was missing almost all of his fine motor and social milestones. Now he is 15 months old and has a tentative diagnosis of severe classic autism. He doesn’t talk and is so hyper sensitive to things that his occupational therapist says there isn’t a word to describe how sensitive he is. He has many more issues than we ever saw with Gabriel. He does a lot more self stimulatory things. And we have a very long road ahead of us now to see that his needs are being met by us and his medical team.
Our life is in a word chaotic. We spend a lot of time going to and from therapists and doctors. We spend a lot of time dealing with situations that unless you have an autistic child would make no sense to you at all. Like how often do you find a need to coax a child to take a bath by using swim goggles as a bargaining chip because you know the main fear is not getting their eyes wet. We spend a lot of nights talking, rocking, singing, holding, snuggling and a million other things with a child who can’t sleep because his body just doesn’t feel tired (sometimes even on medicine). We deal with rudeness from people who should really mind their own business when they think they know everything about our children based off two minutes of watching us deal with a tantrum/meltdown. But in the end I wouldn’t trade any of my children for anything in the world. Every battle makes each success so much more meaningful.
My daughter is a huge shining star in my life. I am so proud of her for everything. She is so smart, beautiful, and sweet natured. Without her my older son would be completely lost. Most of Gabriel’s kid like behaviors he has learned by watching her and she is tireless when it comes to teaching him new skills… like coloring she spent weeks showing him over and over how to use a crayon to make a mark on paper. He looks up to his big sister and calls her his best friend. And now I see Gabriel trying in his own way to carry that same example to Alexander. On his good days he will do something so small you almost miss it … like showing Alex how to open and close the cabinet door so he can get in and out of it easier (Alexander likes to hide in them).
The way the three of them work together and help each other reminds me of the most important thing about our family. And there is no way to really put it except that I know we are truly blessed. Even though the word autism invaded our life with a vengeance we are still a family. And we will always be a family.
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