We have decided to really seek out the biomed route for Gage. I have seen more improvement in the last 3 months of the dietary interventions and supplements than I have in the 9 months before with just therapy. I am anxious to go see a DAN doctor, to get a professional involved who deals with this all the time. Our pediatrician is of course not supportive of this. Saying there is "no scientific evidence" that biomed has any validity.
Well maybe he does not know what he's talking about. Discover Magazine's April (http://discovermagazine.com/2007/apr/autism-it2019s-not-just-in-the-head ) issue has an article about autism and how many subsets of autism may be caused by environmental toxins and about research that is going to to explore this. And research done by reputable universities.
After hearing stories from other moms and seeing the subtle but steady changes in my own son I can not discount the biomed approach. I know that hoping that this will "cure" my son is maybe setting the bar too high, but I can hope to make him the best he can be. I do hope that pediatricians will get their heads out of their butts and look a little deeper for answers. They often miss the warning signs or say " lets wait and see". They are missing the boat and wasting precious time for their patients that could be spent on intervention. Then when parents do ALL the research and come with questions they quickly discount them because of no "scientific evidence" I wonder when the last time my pediatrician read an article about autism was?
Maybe this Discover Magazine article is a turning of the tide. Maybe there soon will be "scientific evidence" Maybe... finally.... us crazy parents will be heard.
Thursday, March 29, 2007
Monday, March 5, 2007
Navigating the maze
One of my greatest sources of frustration and angst is trying to navigate the maze of treatment options for Gage. There are so many options, tons of behavior type programs, biomedical treatments, traditional speech and occupational therapy. Which on will work? The answer is all or none of them. I have heard autistic children likened to a snowflake; all similar but yet each one unique. So what works for one child may not for another. There is no single answer.
Finding the answers for each child reminds me of trying to find your way through a maze and you have to collect puzzle pieces along the way, some of them fit some of them don't and the pieces are not free. Oh no! Some pieces are given to you by the school system or the state or insurance but many of them come with a large fee. ABA therapy 80-140$ and hour. Biomedical treatments: first visit to DAN doctor and first round of blood tests 500-3000$, supplements that may or may not work 50-300$ a month. Those are just two examples there's also RDI, VBT, the Son Rise Program and the list goes on and on..... So which piece do you pay for? There is no guarantee that that piece will be helpful. And many pieces of the puzzle give better results when put together with other pieces. And unlike other medical issues you do not have a knowledgeable person in charge. All the research and planning and decisions are up to you. If you pay for one puzzle piece and it doesn't work you beat your self up because you could have used the money for another puzzle piece that may have worked. It's all very overwhelming.
Right now we are exploring biomedical interventions for Gage. He has been on the GF/CF diet for a month and I am trying some other supplements. Wes and I were talking the other night and we are definitely seeing some improvements in eye contact and language. But I would love to take Gage to DAN doctor to help me at least figure out the bio med aspect. We are saving our pennies. Until then I research and research....
We are also working on getting an ABA program set up for him. We may or may not be able to get help with funding from the county. I found one therapist for 75$ an hour. Not a bad price really. ABA hours can be any where from 10-40 hours a week of therapy. Now she would set up the program and help get it started but not provide all the therapy. We couldn't afford that anyway!
We keep going, winding through the maze looking for the next piece that will be a good fit. Sometimes we get tired and have to stop and take a rest, but we labor on looking for the light at the end and the big piece of cheese.
Finding the answers for each child reminds me of trying to find your way through a maze and you have to collect puzzle pieces along the way, some of them fit some of them don't and the pieces are not free. Oh no! Some pieces are given to you by the school system or the state or insurance but many of them come with a large fee. ABA therapy 80-140$ and hour. Biomedical treatments: first visit to DAN doctor and first round of blood tests 500-3000$, supplements that may or may not work 50-300$ a month. Those are just two examples there's also RDI, VBT, the Son Rise Program and the list goes on and on..... So which piece do you pay for? There is no guarantee that that piece will be helpful. And many pieces of the puzzle give better results when put together with other pieces. And unlike other medical issues you do not have a knowledgeable person in charge. All the research and planning and decisions are up to you. If you pay for one puzzle piece and it doesn't work you beat your self up because you could have used the money for another puzzle piece that may have worked. It's all very overwhelming.
Right now we are exploring biomedical interventions for Gage. He has been on the GF/CF diet for a month and I am trying some other supplements. Wes and I were talking the other night and we are definitely seeing some improvements in eye contact and language. But I would love to take Gage to DAN doctor to help me at least figure out the bio med aspect. We are saving our pennies. Until then I research and research....
We are also working on getting an ABA program set up for him. We may or may not be able to get help with funding from the county. I found one therapist for 75$ an hour. Not a bad price really. ABA hours can be any where from 10-40 hours a week of therapy. Now she would set up the program and help get it started but not provide all the therapy. We couldn't afford that anyway!
We keep going, winding through the maze looking for the next piece that will be a good fit. Sometimes we get tired and have to stop and take a rest, but we labor on looking for the light at the end and the big piece of cheese.
Couple time (sort of)
Everyone needs a little couple time but couples with kids rarely get it and couples with special needs kids hardly ever get it! So last Monday it snowed and Wes took off work. We still had to drop Gage off at school, which is a 40 min drive. So we took Gage to school and decided to go to the grocery store. Now the grocery store has been remodeled. They have a child care area that you can drop your kids off while you shop, (are they geniuses or what!?) and a little coffee shop area with couches chairs and a fireplace. Makinna loves the child care area. She always begs me to go to the grocery store so she can go play at "The Tree House" Wes and I drop Makinna off at The Tree House and then decide to get a cup of coffee before we pick up our things. We get a cup of coffee and snuggle up on the couch in front of the fireplace at the cafe. It was nice to just sit there. And then I just started to laugh. It just struck me so funny (and sad) that to get a moment to ourselves we had to go to the cafe at the grocery store!!! We only sat for a few minutes and looked at the fire and admired the view out the window of the grocery carts all in a line waiting for customers to pick them up. I guess you have to find romance where ever you can get it.
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