I strive with my entire being to not revolve everything in my life around Autism, but with not one but two of my sons afflicted with it...that my friends is a challenge. In complete honesty I think if it was only Edwin that had the 'tism, my life would go on, I would not feel this constant elephant in my mind to be on this dance with Autism.
Tobey Jude was different last week, more meltdowns, more uncontrollable tantrums, more to take care of. Saturday night we were up until 4:30 am, and got a nap before our hectic Sunday mornings of getting 7 kids out the door for Church. We started out good, the kids were going to wear their new school clothes and shoes, found adorable barrettes for the girls and looking forward, believe it or not to a sermon on death. And then IT happened, first Tobey became uncontrollable and just going manic, I pulled him off the dining room table and that one action, set him into a tantrum like no other. And then as I am trying to calm him down, I look into his eyes and they are just darting back and forth. As I look at my beautiful boy, just screaming, jolting his body in every way...I see that he is not there... He is looking at me like he has no idea who I am, total disconnection. Eddie is at work, I have no car....and to be honest even though I just want to sit there and cry, I can't. It is those times that you have to think your clearest, it is those times that you must be your strongest.
After calling everyone I could think of, including my Pastor to let him know that I wasn't going to be in Kids Kanyon. Tobey stared getting back to himself, but you could just sense that IT is right there on the surface and we simply stopped doing anything that could possibly set him off. The house was the quietest I have ever heard, the kids were on their best behavior.
At our support group we had this discussion a few weeks ago of if you could give your child this "magic" pill that would cure them of Autism, or whatever your special needs child had, would you? I said yes, I love my boys immensely, they have made me a better person. But, I would give them that pill, I would cut off my arms if I had to, if it meant having a real conversation with Tobey, or never having to shove another pill down their throats.
There are days that I am just tired, not from lack of sleep, even though I am not real sure the last time I have slept more than 6 hours at home. But there are days that you just get tired of fighting the fight. I am not a very assertive person, and there are days that fighting their fight for them is impossibly hard. But, you just have to suck it up, and put on your happy face and get through the day, no matter what it may bring.
I do have to say this though, I simply have the best Church and friends in the world. After we got back from taking the kids on a drive (one of Tobey's favorite activities) I checked my email and there was countless messages on there from people at Church with offers of dinner, and help and prayers.
Eddie and I tell each other once a week, how much we are loved by people at our Church. We always felt with our families and the lack of real relationship there, we were just not worthy of having a true "family". I don't know if I will ever understand what they see in us, but I am thankful all the way to my soul that I have them. They make days like Sunday bearable, they make our life better. So, thank you again to all of you that reached out to us, you mean more to us then you will ever know.
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