We have one daughter followed by three boys. All three boys have developmental disabilities, including Autism Spectrum Disorders. Within this spectrum lies other challenges such as: ADHD both hyperactive and inattentive type, Anxiety, Depression, OCD, and seizure disorders.
We discovered these difficulties soon after the birth of our youngest son, Ryder. We had the other kids tested after doing our own research and sure enough, they too, were on the spectrum. The final straw was William, my husband. He was tested and with those results, suddenly every little event and course of action in his life made sense. He was diagnosed with Asperger's Syndrome at age 35.
Since then, our life has taken an abrupt turn. We are headed down an entirely different road than we previously thought. It is a foreign place, traveled by few, but more and more are coming. It's lonely and isolating. We not only fight the silence that lies within our home, but the silence that lies within the community and the world.
I am sure my face is fraught with worry and concern. My heart aches with pain and sorrow for what could have been. Dreams are shattered. How do you pick yourself up, brush yourself off, stick a Band-Aid on, and continue on this foreign path? I do not speak the language let alone know the customs.
I'm still struggling with the day to day monotony of it all. The changes are slower than molasses in January. And why are some days easier to accept than others?
I Wish I could make people understand by waving a magic wand. All we really want are friends who understand, or at least pretend to.
I try to be happy for friends and family who celebrate their children's successes. There is always a tinge of hopelessness that I feel. How do I celebrate with you at how well your child can ride a bike when my nine year old has still yet to learn? How do I come to terms with that? No matter how hard our children try, let's face it...they are just not going to be like everyone else. I feel like I'm smacked in the face every day. The really hard part is the part where the two older boys are high-functioning. They LOOK normal, so they are expected to ACT normal. My husband LOOKS normal and he is expected to ACT normal. This has not gotten him anywhere in life.
Six years ago life was bliss. William had a good job working for the state. He was there for three years, the longest he had ever worked anywhere, and enjoyed his job, which ironically, was a job helping others find employment. One day when his boss went through his files, she realized he had no clue what he was doing. Then she made it hell to work there, so he quit. Looking back, we know that if she could make him quit, then he wouldn't be able to receive unemployment benefits. His anxiety got the better of him and he resigned. He had absolutely NO CLUE that his files were wrong. His case load was 130 when the average was 40. I'm surprised he made it three years in an executive functioning type of job at all.
At this time at home, I was noticing behaviors that were like Autism in our youngest son. Hand flapping, no eye contact, sensitivity to noise, etc. This was when the internet became my best friend.
Our three year old was barely talking-but no one could understand him. He would eat handfuls of dirt and sit idly by while his older brother spun in circles all over the floor. Something wasn't right.
Our oldest son, Hunter, always had diarrhea of the mouth, not just the bum. He articulated his words too well. He would line up things like perfume bottles. He was fascinated by strange things like the flowing movement of fabric in the wind. He would spin himself a lot. His sleeping patterns were strange-just like his dad. He loved waterfalls, cranes, dresses, and sticks. Not toys. He also loved to draw. Especially on the walls.
This is when the relentless therapy began.
Now that the kids are getting older, I can see them struggling among their peers. Hunter and Mason are 9 and 10. I wonder how things will turn out the older they become. How will they interact with their peers? Currently, they enjoy playing with friends and cousins that are several years younger than them.
Will they be able to hold down a job? Or be like their dad-who struggles with the simplest things like taking a shower and throwing away a receipt from 1999. Help! There has GOT to be some HELP for these kids when they become adults. They are smart. Smart enough to know they are different. They are smart enough to say when they've had a bad day, that they don't want AUTISM anymore. They ask me if they see someone doing something inappropriate if that person has Autism. How do I change their view of Autism? I really try hard to lay it on the table, be straight up with them, so they understand. To others, it would seem way too blunt and honest. But I have to be this way, or they won't understand.
Shortly after we received the kids' diagnosis, I felt like a fighter. I was jumping into this thing feet first and I was gung-ho at making it work for our good. Five years later, I'm not so sure I jumped in the right direction. Or if I even jumped. Maybe I lept a little and sprained my ankle. I didn't think of the extra things that go along with autism such as money problems, marital problems, health problems, etc. I do not know what could be more stressful.
And that is the end of my story for now.