Today, the girls and I, had to be in the van for 11 hours straight so by the end of the day, we were just so tired and glad to finally be free. My husband suggested he take me to Borders and let me be by myself there while he is with the kids in the mall. I got a coffee and as I'm walking to the restrooms, I pass a book that just jumps out at me. "Look Into My Eyes
" about an boy growing up with Aspergers. I grabbed it. Once I was able to find a seat to read a book, I then decided to go ahead and look for other books in this topic. My mind has just been reeling with questions and I haven't had any answers. So I asked a worker if she would show me the area for Autism.
The problem is I always find books on just Aspergers or just Autism. What about those that are not as extreme? Maybe like my son who is more high-funtioning. I just jumped when I saw this book. A Parents Guide to Asperger Syndrome & High-functioning Autism by Sally Ozonoff (and others)
. I lovingly held this book all the way to my seat. I set the other one aside for the time being. I devoured the first 3 chapters that were so helpful in understanding that in the Autism Spectrum, each of those children are different in how they behave. I once again looked at the list of how my son was first diagnosed and even stronger this time, I identified things. They gave examples of behavior and how different each kid could me. I was able to really see Chaz in some of the stories. While reading, I just cried.It has been a long time since I've seen a doctor because I was really disappointed the last time I went. The doctor that initially diagnosed him had moved on with a different company. She was with Chaz for an hour and she saw him exactly as I see him at home. She had no doubt in her mind and was really helpful explaining it all to me. The second time I went in, I had a new doctor. He spent all of 15 minutes and changed his whole diagnoses to Bipolar. What??? Chaz was just sitting there calm and playing with some toys. He didn't see Chaz in his normal behavior that I see at home. Then he goes and just changes the whole thing and suggests medicine. That was it. Wham Bam. I never went back. That was 4 years ago.
In the meantime, I held onto the initial diagnoses since it's made a lot more sense. Except that I have been feeling lost in the last 4 years having no one to guide me or help me through this. Seeing Chaz lately really take a down turn, I've come back to searching. When I once again went down the list of diagnosing AS-HFA, I was amazed even more how much Chaz fit into the categories. I read real stories of different kids. There can be so many traits and each kid can have different ones. Some of the stories, it was like I was reading about my son. That's why I cried. A sadness but then a relief. This book was giving me answers. Even touched on genetic issues which I thought was interesting. The rest of the book is how to work with them. That part I didn't get to read yet. I'm gonna order it on Amazon rather than buy in the store. ($14 savings). This book was like finding a treasure for me.
DSM-IV Criteria for Autistic Disorder- http://www.cdc.gov/ncbddd/autism/overview_diagnostic_criteria.htm
5 comments:
Just wanted to give you a hug. It can feel very lonely at time raising a child with special needs. I'm so sorry you had that bad experience with the dr. I don't know if you are near NC, but I know that there are a lot of good drs in our area that understand autism.
We are trying to figure out what is going on with one of my sons now and it can be overwhelming at times. I'm hoping we figure it out soon.
Blessings,
Leslie
Oh Jenny--I am so glad you found that book. I hope you can find another doctor who will be helpful and listen. There seems to be less of them these days. Thank you for the link. It was so interesting. I didn't bring my DSM with me when we moved, thought I wouldn't be doing psychology here--how silly of me. But I have often wondered (as parents do) about our kids. I think because they are adopted and we don't have that genetic portion to fall back on. But after reading that I can see they are normal--maybe just over parented (ha!). We were concerned about Ian (14 mos) because he was born positive for cocaine, but he seems to be meeting his milestones--just not always in the right order. Bless you sweetie--you are such a great Mom! Your children are blessed to have you and Charles!
Awesome to find a book that helps and answers some questions. What a shame you havn't found a doctor who understands and CARES.
Leslie, I don't live in your area but I wish I had a list of good drs in mine. :) it would help so much. I didn't really know what was going on with Chaz until he started Kindergarten. That's when I saw a huge difference between the other kids.
Bonnie, I have a friend who adopted a little boy who's mother was using cocaine while pregnant with him. It's been a real struggle and he's going through therapy. Thank goodness little Calvin got them for parents because they go above and beyone for him. I know it's tough for them at times. :)
Chris H, I know. I really want to find a doctor but the list is just so huge. Even more, I nned a pediatrician who will understand what's going on and not report me because of Chaz's bruises. He gets really wild and gets hurt or when he is really angry and hurting himself. They tend to just assume I'm causing him the harm. I would love to find a regular dr who would work with me and learn to understand and help me rather than just brush me off.
Oh, Virginia. It took us YEARS to get G diagnosed. It's no fun at all, is it, to deal with all that at home and then get * from doctors who are supposed to help.
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