Wednesday, April 22, 2009

So my little thinking brain was hard at work last night. I feel like Ellen Degeneres when she talks about how she is always thinking although I don't come up with the funny things she does. So, I digress....This therapy thing will work this time and I feel encouraged by yesterday although a hard cry does make you very sleepy. I had a hard time functioning the rest of the day/evening.

When I first went to therapy back when Alex was being diagnosed...Simone wasn't sleeping and my husband had had his seizure. The therapist diagnosed me with Depression...duh! Of course with figuring out what therapies Alex needed then subsequently getting him to the therapies/scheduling, etc. Oh and Korey lost his license for 3 months...me going to therapy appointments was out of the question. So, she put me on an anti-depressant that helped but I don't like medication so I only took it for about a year. I'm not opposed to taking it when needed. I personally wanted to not take it as I felt I was at a better place. So I went off it for a few years then started having some major ups and downs (mostly hormonal) so my OBGYN put me back on birth control. ARE YOU KIDDING ME....my husband has had a vasectomy! Seriously though that has helped a lot and I think if I wasn't on that I would be back on an anti-depressant.

So, that is a little background that brings me to yesterday. She did the "assessment" and said that at this point she would diagnose me with "generalized anxiety disorder". The secondary diagnosis is "depression NOS". Ha! How many parents of Autistic children get the PDD/NOS diagnosis. The "NOS" means "not otherwise specified". I find that ironic. She said that if I wasn't on the birth control that the underlying depression would be stronger and probably warrant that as a primary diagnosis. She also reminded me that I have been dealing with this for over 5 years - ouch!

The last therapist I went to let me talk/vent and I think I needed that but I also feel like I needed a plan of action. At my next appointment she said we would work on just that...how I can change my thinking/worrying, etc. So I am hopeful!

Now, I want to go back to the early therapy time for Alex. Some of you reading this feel like you may have been one of those people giving me platitudes. I don't mean to be so blunt but when anyone is going through a hard time they do not hear things the way you mean them. Most of my issues with the platitudes have to deal with people who I feel should be helping us more so when I hear the platitudes it just makes me upset. So many of you have been there for me over these last 5 years.

Therapists are awesome...

My sister is my sounding board....

My sister-in-law is my sounding board and also our free housing when needed for summer camps...

My best friend from college is another sounding board....

And many other friends....

Wow! Looks like I've needed some sounding boards! Again, why I'm in therapy :)

So, when we started this intensive 6 week program at the Piqua Center. I was scared of Christine. Christine if you are reading this you already know this. She was Alex's neuroeducation teacher that he would see for about a half hour then later an hour. She is the bomb and helped him so much over the 3 years he was there. I remember him crying and her taking him "sternly" with her and I felt just awful as a parent when he misbehaved. Oh and the time he pooped on her pants - OMG! I grew to appreciate (that isn't even a big enough word) what Christine was able to do with Alex. I am SO grateful that we are also still in touch.

Alex also had "floor" work for about an hour each time he went. The therapists would work on patterning and tactile exercises with Alex (read about it more on their website www.rcnd.org as I cannot explain it correctly). Oh how he screamed and cried the first 4 days. He grew to love it and had a famous saying of "one more time" in a cute Alex voice that the therapists can imitate :)

Alex also had water therapy. Basically it was like private swim lessons with a twist. He had to listen to direction all the while totally obsessed with pouring water or seeing water fall when he flapped his hands. Water was very overstimulating for him. Jason was just awesome and because of him going to the pool in the summer is so much fun for us. I have heard stories about parents of children with Autism that have had to fish (no pun intended - maybe I am funny like Ellen) their kids out of ponds. Regular swim lessons don't work for these kids so having this therapy was such a blessing.

Now, during the "floor" work I was supposed to help Alex with the program. Most of the time, though (and thankfully) they had enough help and he often didn't want me there. This was such a blessing as I really enjoyed my time with books/magazines/journaling and sometimes napping! I especially loved it when they got the new building and the nice navy leather couch! I remember when we first started and Mrs. Hahn saw me sitting at the table while Alex was in therapy. She said she believed that the caregiver should get time to themselves. Oh how true!

Now the biggest stress I think during this time was finding someone to watch Simone for me while I went to therapy. I relied a lot of friends. I didn't have the family support I needed during this time. I don't think I even did the relying on friends very well. Looking back I think that I relied too much on friends and didn't show my appreciation well. Some of those friendships didn't last or make it through this time and that saddens me. I think this is also why I have a hard time relying on friends and family currently. I feel like I should have to ask or maybe should ask and I hope to work through this again in therapy!

So, thankfully we had this Piqua Center, music therapy in the home as well as preschool. Now what is "recommended" is 40 hours a week of intensive therapy such as ABA. When I researched the cost I was just blown away. So many of these families were scheduling round the clock therapist to come into their home. The cost to the families was $20K-40K. Often wiping out retirement accounts, taking out second mortgages, etc. Not to mention the toll on the marriage. I read a story that talked about the divorce rate in families with special needs children being over 80%. Wow! We spent an average of $7000/year the first 4 years. That was a struggle for us but we made it through. I couldn't imagine if we had to spend more and I couldn't imagine if Alex was more severely Autistic.

But...what did we do in the summer months when there wasn't school...??? We continued with a few days a week of the Piqua Center. However, he needed more structure on those off days. I remember feeling hopeless that so many summer "camps" were for older/school-aged children. It was so hard to find something for preschoolers. Then I heard of Stepping Stones in Cincinnati (about an hour and a half away). I can't remember honestly how I heard about it. They have a summer camp, Camp Allyn, in Batavia, Ohio, which ironically is less than 15 minutes from my sister-in-law's house. So, we spent a few summers going to camp there. I remember we would go for several weeks each summer.

The first time I went to observe, I just cried to my sister-in-law. I still couldn't believe that I was having to take my child to a special needs camp. She was there for me so much during those summers and I can't thank her enough.

Okay...I think I need to go treat myself to a fancy coffee at the coffee shop and read a good book. This Autism stuff is heavy.

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