New Autism Diagnosis

The APA is revising the DSM, and the autism world is up in arms. That's predictable, of course, since the label "autism" often opens the door to thousands of dollars of funding for therapies and services. The new definition removes PDD-NOS (William's educational diagnosis) and Asperger's, leaving a more narrow, classic definition of autism.

Personally, I'm not too upset about what the change means for us specifically. That's easy for me since I never thought William had autism. Autism treatments have never worked for him, and even when you explain that to therapists, it's hard for them to break out of the stereotype and work with William differently.

It also helps that the proposed DSM 5 is adding 5 communication disorders, including a general Language Impairment that is a much closer fit for him. They are also adding the more familiar (but still pretty unheard of) Specific Language Impairment and a Social Communication Disorder. Of course, none of these new disorders have any money attached to their names... yet.

The new manual is not expected out till May 2013. So that gives us time to benefit from the funding we currently have. William is making so much progress and God has proven Himself so faithful, I am sure he will continue to excel whatever funding is available.

Still, I'm not sure it's good to get rid of those other labels. Shouldn't it be the people and organizations handing out the funds who decide how broad or narrow they want to go? I know how frustrating it can be as a parent when your child doesn't fit any label, and so people assume there's nothing wrong. And should we really be having psychiatrists and psychologists diagnosing language disorders?? I wonder what ASHA thinks of that...

Special Sibs

Lily and Abigail don't know it yet, but they are part of a group of kids called "special siblings," siblings of children with special needs.

I became very aware of this at the end of the school year when Lily got very excited that she would have her preschool class for two days that William wouldn't. I shouldn't have been surprised. Every day of the week last year, Monday through Friday, William had some activity Lily didn't have- speech, OT, tutoring. These activities were hard work for William, but to Lily they looked like fun. He got special attention and special praise for his efforts.

I wasn't really surprised, but it did scare me. I don't know much about special sibs, but I know enough to know that rivalry is a major issue. It seems like siblings will usually come to accept their brother or sister with special needs, but often the bitterness towards the parents and hurt from being neglected remains into adulthood.

So I determined to make this summer one of inclusion. Thanks to a new Siblings Splash program, Lily is allowed to come to swimming lessons with William. She can't come to Safety Town of course, but I did go so far as to sign her up for OT camp. And I also decided to try out a summer dance program at a local studio so she has an experience outside the special needs world.

We went this week to buy her dance outfit. She wanted the one with the long skirt attached because it spins. She was so excited to try it on when we got home. She twirled around and giggled. (I wish I could get the video to work for you all; at the end she almost crashed into the tv. Yep, we need dance lessons!) Then she said, "I wish Bubbie could go to dance class with me." I still think it's good for her to have her own activity, but I'm so glad that's how she feels. Here she is posing by Abigail, her adoring audience.

Mommy Inclusion

As we approach the end of the school year and make decisions about next year and the future, I've become increasingly aware that inclusion is not just an issue for William. Our preschool is small and has a strong sense of community. We go there everyday. The moms there know my life, they share my world. They are easy for me to relate to, and they relate to my kids easily.

A lot of people talk about the Christian bubble. I realized last week that I can be tempted to retreat into the special needs bubble. In fact, I often feel more comfortable with non Christian moms of special needs kids than I do with Christian moms of typical kids. I know that's understandable at a certain level, but it's something I definitely want to work on. A few initial ideas on how I can grow:

-Make Jesus and not life circumstances or season of life issues the primary topic of conversation with other Christian moms.

-Make Jesus a significant topic of conversation with non Christian special needs moms. After all, a lot of these ladies couldn't attend most churches (ours included) if they wanted to.

-Accept the fact that relating to people who are different than me (and helping our kids relate together) can be hard work, but it's worth it. Pray for God's help before planned interactions.

-Grow in knowing when and how to graciously explain differences to those we have ongoing relationships with. (Suggestions, anyone??)

Feel free to share other ideas or ask me how this is going.