The Ugly Side of Autism

Today, I got that email. The email I get every 6 months to a year that tells me my daughter's behavior is out-of-control. She kicks desks, calls people names, picks at her skin, threatens herself and others, etc. What do you do as the mother? The only thing you can do is feel guilt, and embarrassment. Whether the behaviors are intentional or not, is irrelevant, because they are happening. And, as the mother of this child...you are appalled, and overwhelmed with so many feelings of disparity. The questions begin... Is it puberty? Maybe. Is it Autism? Yes. Is it her age? Maybe. Is it her meds? Probably. Is there a change to her schedule, her home life, her family?? No. (Not that I am aware of) No sooner do I think she might be doing ok--I get my reality check. It's that middle of the year, knows the routine, knows how to get out of work, thing that she does every year. So, we meet as a team, and come up with behavior strategies, and hope for the best.

We don't live in Ann Arbor, or near a big, fancy autism clinic. We live in Saginaw, Michigan. I have exhausted all Psychiatric ideas, and am feeling at a loss. Even her pediatrician recently said, "you may want to take her somewhere else." Good lord, it only took me 5 years to get her used to him!! Are you kidding?? No one wants to help a child with mixed diagnoses. This child is clinically diagnosed PDD-NOS. Sounds fancy...right? Pervasive Developmental Disorder - Not Otherwise Specified. (which means...we don't know where to put her on the spectrum) We have tried nearly ever med we can think of for behaviors, impulsivity, ADD, and anxiety. What do I do next? I guess a visit to the University of Michigan Autism Clinic might be on my list next. They claim to have Psychiatrists and Psychologists, who know about PDD-NOS. It's only an hour away, and I'd have to go every few months to keep up on visits. Easy right? I'll fit that in between my 12 credits, dealing with my other child (oh yes, forgot about him:), trying to sub, keeping up with housework, homework, etc. (and yes...this is my venting blog) Sure- that's feasible!

With 1 in 100 children diagnosed with Autism - it seems like this (somewhat) large town, near Dow, would have a lot more resources. What is working for other kids with PDD-NOS? What isn't working? I plan to research and look in to new things. (In my spare time) I will go in to the behavior meeting with open ears, and ideas. I always have hope that these things will work. I want my daughter to succeed in whatever she does.

However, I'm tired. Tired of Autism. Tired of PDD-NOS. Just plain tired, and that's the ugly truth. Can you imagine what it's like to be her?

Tomorrow is another day.