This morning after breakfast, the most wonderful thing happened. While I was sitting on the couch watching the morning news, Wes brought over The Very Busy Spider written by Eric Carle for me to read. It's one of his favorite books along with Brown Bear, Brown Bear, What do you see? I started to read it and Casey came running over whining. He wanted to sit and read too. So I had both boys on my lap and read to them. Together. The three of us. My heart sprung from my chest, it was so filled with pride and love. What a magical moment. I am so in love with my children.
Saturday, March 29, 2008
Friday, March 28, 2008
We just had a meeting with our new coordinator of our local Family Support Services. Wes had respite care while he was in the birth to 3 program, but when he turned 3, someone dropped the ball and the services ended. So we are setting them up to start again. That is, until I found out that because Wes isn't on Medicaid, he could be denied respite services. The reason for that is because the respite will be state dollars and not paid through Medicaid. So okay, give me the forms and I'll fill them out! Then the coordinator asks us how much we pay for diapers and Wes' Pediasure. She let us in on a little secret. All that could be paid by Medicaid. HOLY COW! Are you kidding me? Why didn't someone let me in on this secret before? If it's one thing that kills us financially, it's diapers. Lots and lots of diapers. $37 a box every 2 weeks and that's just one kid! I know it doesn't sound like a lot, but again double that up and add on another $37 a month for the Pediasure.
I was toying with the idea of Medicaid, but we have insurance, good insurance so I wasn't sure if we should. Well now we are! The coordinator is sending me the forms to fill out and I'll be doing it immediately. My plan is to make Wes sound as worse as possible without lying of course. We can use all the help we can get. He didn't qualify for SSI because we make too much annually. Damn government! I guess I feel better about taking the Medicaid since we got screwed with the SSI. Putting it that way makes me feel a whole lot better!
Wow. I'm sitting here and I can't think of anything else to say, but wow. I knew all along that our kids have more potential then society gives them credit for. Our kids can do amazing things when we tap into their minds. I feel even more blessed to be the mother of an autistic child.
Watch this movie and don't forget the tissues. I'm not sure how long it will be up on the website.
Friday, March 21, 2008
I sat down last night with a very good friend who I consider to be my 'Super Woman'. I met her through our school districts support group. She has been so helpful to me since then. She continued that streak last night.
I wanted to pick her brain about Wes' medical issues and where I should go. I have been looking for a special needs pediatrician to help me navigate the crap that is autism. His current pediatrician is a waste of my time and keeps dismissing me and my concerns about Wes. His nutrition is horrible, he's having some bowel issues and the dreaded feeding issues. All of which I'm am being told he's fine and I worry too much. I need someone to tell me where I can go to figure out his issues. Kind of like 'what next?'.
J gave me a whole slue of names and numbers to help me on my journey. I've contacted a nutritionist, a gastroenterologist, and transferred the boys to a new pediatrician that she recommended. I'm feeling really good about all of this and I'm looking forward to solving more issues I know Wes has.
I can't thank you enough J. I just hope I can be of help to someone as you are to me. I'm going to make you a cape someday.
Tuesday, March 11, 2008
The time change has done a doozy on my boys. They are both so off kilter that the whining is starting to make my ears bleed. It usually takes a few days before their little bodies are back on track.
Because of this, Wes was more agitated then I've seen him in a long time. He had a tantrum at school with the transition from school to home which he hasn't done in quite sometime. His aide was concerned until I reminded her of said time change. In the afternoon, he had his OT appointment. I let his therapist, J, know of his behavior and what was happening. I asked her to take it easy on him and he let her know the same thing in his own way. She decided to try Listening Therapy on him. J has taken a course and become certified to administer Therapeutic listening. She had tried the Therapeutic Listening with Wes in the past, but he refused to wear the large headphones. Monday, he decided they were okay. J played some music that was modulated. The music had high and low pitches alternating through-out. She had at first, Wes kind of had an odd giggle, but settled down and barely moved for a half an hour. J was very surprised by this given the way his day had gone. After the session she let me know what happened and asked me to keep a close eye on his behavior for the rest of the night.
Let me tell you, I was shocked when we got home. The vocal stimming and rocking had totally diminished. He seemed slightly more hyper, but he wasn't flapping his hands and screeching like a banshee. Tim noticed it too. Wow is all I can say. I immediately emailed J the next morning to let her know what we saw. She said that with his body being so disregulated due to the time change, this was major for him. It had regulated him so well that she wants us to continue to do it daily. She is ordering Wes some headphones for us to borrow.
I love my child dearly, but those vocal stims are enough to drive a sane person mad. They are loud and at times ear piercing. I have to remind him to use a quiet voice, but I know it's not that easy for him. He does these stims to regulate himself and keep his body in a state of awareness.
It will be interesting to see what this does for him
Friday, March 7, 2008
Boy was that appointment stressful, yesterday! The new optometrist was super nice, but his office was like visiting 1950. It was very small and located in an old house. The parking was just a driveway. Anyway, there was no updated equipment and no where to put Casey while the appointment was going on. I could feel my blood pressure rising with each passing minute. Casey was crying and squirming because he wanted to get down and Wes wouldn't sit longer then 30 seconds in the chair. Finally the doctor put on a slide show with pictures of Disney World from what looked like 1970. They were orangish in color from fading and the people looked like hippies on the pictures. Oh boy.
After about 5 minutes of the doctor trying to get Wes to identify some black and white pictures, it hit me. Uh, the boy knows his letters and numbers. DUH! Immediately, Wes recognized the letters and at one point was reading them from the 20/25 line! Holy Cow! How on earth did we get a child who had such vision? Even with covering one of his eyes, he could still read the lines.
So needless to say, there is nothing wrong with them. The doctor did notice a slight turn on two occasions, but told me it's nothing to be concerned with and to get him to look to the left to correct the alignment when the eye starts to turn in.
He also briefly checked Casey's and said his was fine as well. Now that that's over with..
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Thursday, March 6, 2008
Tim and I had another meeting with the school about PT. The evaluation was done and we had to sit down with the PT and figure out a plan for the rest of the year. He was very nice and seemed young to me. I was reliving my own school memories I guess. Anyway, Wes does qualify for PT and it will be started next week. The paperwork for his IEP needs to be changed. He was quite impressed with Wes and his determination to succeed. The one issue that remains a problem is body awareness. Wes shows no correlation between his movements and where his body is. For example, he was on a balance beam and instead of looking at the board and his feet, he was studying something on the wall. His mind just wasn't connecting to the task and what he needed to do to accomplish it.
This carries over to home as well. The boy never watches where he's going and often trips. I can't count the times he's fallen in the snow because he wasn't looking. I've joked about getting him blinders like horses use to keep him focused. I thought that this issue was more an OT area, but apparently it's a PT thing too. I wish I had known this because I would have fought for PT when Wes was in EI or when he first started school. Another lesson learned.
He's going to see a developmental optometrist today to have his eyes rechecked by someone else. I'm not happy with his current eye doctor because she is only available in the morning. It's a problem because I've noticed his left eye turns in more at the end of the day then in the morning. He's more fatigued and less likely to control the eye. This doctor comes recommended by a friend who's son has aspergers. I hope he can see what I see and we can come up with a better plan to correct the problem if needed then the wait and see approach we got from the other office.