I check Autism message/support social network sites occansionally and I often read comments like "everything happens for a reason"and "this is what was meant to be". That kind of stuff really gets under my skin. Usually it is framed in some sort of religious context although not always. It troubles me that people can believe God just decided to start striking our kids with this devastating disorder. I DO believe in a very powerful life force that I call God but I believe what happens to us is largely due to our own actions and those of our society. I don't understand how some people can say things like "everything happens for a reason" or "this was meant to be" and still maintain that they have free will.
I know that sometimes these comments are just meant to encourage people to find the good in a situation. The belief that everything happens for a reason might lead one to search for that reason and glean something meaningful and positive. That is a good way to live but I still can't jive with some great wizard in the sky pointing his wand and saying "Autism for you!"
My son was not meant to be like this. It could be genetics, spontaneous mutation, pollution, shots, water filled with prescription drugs, or some other toxic chemical but I believe WE did this. WE, meaning my husband and I, possibly passing on some genetics defect, or WE, meaning society, poisoning our children. It is probably a WE that includes both of those things and maybe something more. Call on God for strength or comfort or peace but as the creator of Autism? No, that is all us.
Autism was not "meant to be". It just is.
Tuesday, July 21, 2009
Tuesday, July 7, 2009
Potty
We have something going on here that I really wasn't sure would ever happen - Sam is using the toilet! He has a week and a half off from school (he went back this past Monday). The school has repeatedly told me not to try potty training at home until he was on a 2 hour schedule at school. I respected their wishes until this break. I felt that putting him in diapers the whole time would be a waste. It took about 2 days for him to "get" that what he did at school was the same thing as what we were going for on the home toilet. Then he stayed dry the rest of the week. He won't request the bathroom but as long as I take him on a regular basis, he pees like a champ. Poop is a whole other story. I have known some typical children who took 6 months or more to poop in the toilet so I imagine I am in for months of undie washing. I happened to catch him squatting this afternoon though and I grabbed him and ran him to the bathroom. We had a success and he got a lollipop right away. I don't imagine that any light bulbs went off in his head but hopefully I will "catch" him as often as I can! SO, is he potty trained? No, but he is at least on the way.
Tuesday, June 30, 2009
Sam has completed his first full year of school. While I am very proud of him for the gains he has made, I can't help but wish they were a little more apparent. He understand more directions at this point. For example, I can ask him to pick somehting up and give it to me or to carry something from one room to another. There is still very little language. He can ask for help, more, chips, cookie, juice, shoes (to go outside), open, jump (trampoline), and a few other things but no phrases.
His behaviors are still very abnormal. He will spend hours pulling leaves and dropping them through the boards of the deck or stcking blocks and dropping them. At certain times he gets wound up and starts throwing then hand flapping again and again. When he does that we are holding his hands down at his sides and saying no throwing - it seems to be helping a little.
I, like many parents of autistic toddlers, hoped that school would lead to this explosion of development and Sam would be able to go to regular elementary school. That is looking less likely as he is now 4 and barely verbal. We will keep trying though. We have a great new speech therapist who uses the Prompt method. Sam responds well to that.
We are continuing with nutritional/wellness therapies as well.
Maya is doing beautifully - pointing, toddling, talking, playing, and generally being cute.
We are continuing sponsor a lovely little girl in Ethiopia. I wrote her a letter and sent pictures a little while back and I am hoping to write again this week. We are sponsoring through a group called Children's Hope Chest. Every time I shell out for extra private therapy I think about how for abotu a third of the cost of 45 minutes of therapy I can feed a child for a month. Amazing. Those of you that know me know I have always thought I would adopt someday. I don't know why, it has just always been on my mind. Of course, I never expected Autism. We will have to see how Sam progresses. I am still hoping for a success story.
His behaviors are still very abnormal. He will spend hours pulling leaves and dropping them through the boards of the deck or stcking blocks and dropping them. At certain times he gets wound up and starts throwing then hand flapping again and again. When he does that we are holding his hands down at his sides and saying no throwing - it seems to be helping a little.
I, like many parents of autistic toddlers, hoped that school would lead to this explosion of development and Sam would be able to go to regular elementary school. That is looking less likely as he is now 4 and barely verbal. We will keep trying though. We have a great new speech therapist who uses the Prompt method. Sam responds well to that.
We are continuing with nutritional/wellness therapies as well.
Maya is doing beautifully - pointing, toddling, talking, playing, and generally being cute.
We are continuing sponsor a lovely little girl in Ethiopia. I wrote her a letter and sent pictures a little while back and I am hoping to write again this week. We are sponsoring through a group called Children's Hope Chest. Every time I shell out for extra private therapy I think about how for abotu a third of the cost of 45 minutes of therapy I can feed a child for a month. Amazing. Those of you that know me know I have always thought I would adopt someday. I don't know why, it has just always been on my mind. Of course, I never expected Autism. We will have to see how Sam progresses. I am still hoping for a success story.
Friday, April 17, 2009
DAN! appointment
We had our first DAN! appointment yesterday. It was much more pleasant than I expected. Sam's behavior was horrible, of course. He threw things around the office, ran around and climbed the furniture. The doctor, though, was very mellow. I almost went to another DAN practitioner back in the fall but my quack radar went off when she told me she would sell me lots of supplements before we got any test results. Also, she charged $500 for the first appointment and she isn't even a doctor! I cancelled the appointment with her. I heard about the woman we did go see from another family and they felt very at ease with her. She didn't try to sell me anything, she didn't insist we immediately go back to gf/cf or anything like that - she is going to wait for test results before making recommendations. We just paid for the office visit and we will have to pay for labwork -EXPENSIVE!!! I am not going to harp on all the prices though. I made up my mind before we went to the appointment that we were just going to go for it. Sam will be 4 in a little over a week and I feel like our window is closing. I am hoping for major gains before he turns 5.
Wednesday, April 15, 2009
Wondering When the World Changed
Some parents of autistic children seem so sure of the moment their child "became" Autistic. It was right after the MMR or the DTaP or a fever or seizure. . . They KNOW that nothing was the same after that incident. I have no such moment I can pinpoint. In recent months I had convinced myself that I could have detected his autism much sooner, possibly as early as 1 year old. Maya's incredibly social personality is such a contrast to what Sam's "mommy only" attitude was at her age. Her behavior had me convinced that something could have been detected sooner.
Earlier this afternoon I came across some photos of Sam when he was younger and all of these memories of the way he used to be came back to me. The first is a photo of Sam in his exersaucer as happy as can be. I remember when he used to play in it while I cooked and/or cleaned up in the kitchen. He would babble and bang around just happy to hang out with me.
The second is a photo of Sam in the cutest Hanna Anderson pajamas. He is probably 14 or 15 months in the picture. It made me remember the dancing game we would play in the kitchen when he was too big for the exersaucer. I would say "Sammy dance" and he would "dance" by running/hopping in place. Then he would stop and look at me. I would follow with "Mommy dance" and do a similar jig myself while he giggled. We would go back a forth a few times while pasta sauce or chicken simmered on the stove.
A third photo is one we used for Christmas cards whan Sam was about 19 months old. Sam is in his fleece one piece pajamas and sitting on a chair in the family room. He is beaming at the camera with one of the happiest grins you can imagine.
The final photo that prompted this reflection is a picture of Sam sitting on the stairs in khaki pants and a striking blue polo shirt. It was the day of our neighbor's son's first communion. Sam got right on the dance floor and bopped up and down nervously when we arrived at the party. In the picture he is looking right and the camera and smiling.
Looking at each of these photos I was suddenly hit but this feeling that he seemed so NORMAL at those times. He was not withdrawn, stimmy, or hyperactive at those times. While he may have shown signs of autism early on - not much pointing, difficulty waving/motor planning/imitation, running back and forth when he learned to run, slow verbal skills - he also did things to negate our concerns - sit on my lap for stories, snuggle, smile at other children, make his wants and needs known through nonverbal communication.
After 2 the signs became more apparent. I remember watching in horror as he lined up puzzle pieces in perfect arches across the carpet and tearing up as he stopped letting me read to him. As Sam grew from 2 to 3 his condition got worse. He started hand flapping, jumping, humming, bouncing on his bed for hours at night, losing the few words he had, chewing paper, and throwing everything in sight.
Looking at these pictures made me sad missing the little boy I thought I had but it also made me realize that I wasn't negligent missing his diagnosis in those first two years. There was so much he did that seemed "typical".
So when did the world change? I just don't know.
Earlier this afternoon I came across some photos of Sam when he was younger and all of these memories of the way he used to be came back to me. The first is a photo of Sam in his exersaucer as happy as can be. I remember when he used to play in it while I cooked and/or cleaned up in the kitchen. He would babble and bang around just happy to hang out with me.
The second is a photo of Sam in the cutest Hanna Anderson pajamas. He is probably 14 or 15 months in the picture. It made me remember the dancing game we would play in the kitchen when he was too big for the exersaucer. I would say "Sammy dance" and he would "dance" by running/hopping in place. Then he would stop and look at me. I would follow with "Mommy dance" and do a similar jig myself while he giggled. We would go back a forth a few times while pasta sauce or chicken simmered on the stove.
A third photo is one we used for Christmas cards whan Sam was about 19 months old. Sam is in his fleece one piece pajamas and sitting on a chair in the family room. He is beaming at the camera with one of the happiest grins you can imagine.
The final photo that prompted this reflection is a picture of Sam sitting on the stairs in khaki pants and a striking blue polo shirt. It was the day of our neighbor's son's first communion. Sam got right on the dance floor and bopped up and down nervously when we arrived at the party. In the picture he is looking right and the camera and smiling.
Looking at each of these photos I was suddenly hit but this feeling that he seemed so NORMAL at those times. He was not withdrawn, stimmy, or hyperactive at those times. While he may have shown signs of autism early on - not much pointing, difficulty waving/motor planning/imitation, running back and forth when he learned to run, slow verbal skills - he also did things to negate our concerns - sit on my lap for stories, snuggle, smile at other children, make his wants and needs known through nonverbal communication.
After 2 the signs became more apparent. I remember watching in horror as he lined up puzzle pieces in perfect arches across the carpet and tearing up as he stopped letting me read to him. As Sam grew from 2 to 3 his condition got worse. He started hand flapping, jumping, humming, bouncing on his bed for hours at night, losing the few words he had, chewing paper, and throwing everything in sight.
Looking at these pictures made me sad missing the little boy I thought I had but it also made me realize that I wasn't negligent missing his diagnosis in those first two years. There was so much he did that seemed "typical".
So when did the world change? I just don't know.
Saturday, April 4, 2009
tomatis listening therapy
We are trying a new therapy called the Tomatis Listening Program. We are using the lovely people at Bergen Pediatric Therapy in Westwood, NJ. They are fantastic - I recommend them to anyone looking for a sensory integration approach to OT. Sam completed the first loop (15 days@ 1 1/2 hours a day). I haven't seen any gains in language so far although I my husband I and I both think we have seen him be more affectionate with my husband. I hope that with the second and third loops we see more gains. It is so hard to know what hterapies to try. Everything cost so much money and each one is a gamble.
In a few weeks we are going to see a "holistic" doctor who also know the DAN! (Defeat Autism Now) approach. DAN! is very controversial but I feel like we have to try eveything.
At the moment Sam attends an ABA based school for autistic students, gets Spectrum COmplete (a multivitamin.mineral supplement from Kirkman Labs), DHA/fish oil, and we just started a high strength pro-biotic (Three-Lac). We also do one private OT session a week.
Maya, our second child, is 11 months now at she is right on target with her development - such a relief. She makes great eye contact, responds to her name, points at things she is interested in, babbles, dances, crawls, pulls up and eveything else an 11 month old should do.
What are we doing differently? I refused the flu shot when I was pregnant. It contains mercury and if getting the flu during certain critical periods of pregnancy is a risk factor for the child developing schizophrenia (which has been found in studies), why PUT flu in my body on purpose? In addition, we are using a alternative vaccine schedule. She gets no more than one shot at a time and we are putting off any vaccines for diseases she won't be exposed to as a baby. She will get them but when she is older. We believe vaccines are important as a public health factor but after learning about what they contain, I can't see ever injecting a tiny baby with ALL of them. I recommend The Vaccine Book by Dr. Sears for anyone who wants to know what each brand of vaccine contains.
In a few weeks we are going to see a "holistic" doctor who also know the DAN! (Defeat Autism Now) approach. DAN! is very controversial but I feel like we have to try eveything.
At the moment Sam attends an ABA based school for autistic students, gets Spectrum COmplete (a multivitamin.mineral supplement from Kirkman Labs), DHA/fish oil, and we just started a high strength pro-biotic (Three-Lac). We also do one private OT session a week.
Maya, our second child, is 11 months now at she is right on target with her development - such a relief. She makes great eye contact, responds to her name, points at things she is interested in, babbles, dances, crawls, pulls up and eveything else an 11 month old should do.
What are we doing differently? I refused the flu shot when I was pregnant. It contains mercury and if getting the flu during certain critical periods of pregnancy is a risk factor for the child developing schizophrenia (which has been found in studies), why PUT flu in my body on purpose? In addition, we are using a alternative vaccine schedule. She gets no more than one shot at a time and we are putting off any vaccines for diseases she won't be exposed to as a baby. She will get them but when she is older. We believe vaccines are important as a public health factor but after learning about what they contain, I can't see ever injecting a tiny baby with ALL of them. I recommend The Vaccine Book by Dr. Sears for anyone who wants to know what each brand of vaccine contains.
Monday, January 26, 2009
Quitting GF/CF Diet
Well, we gave it a shot. Sam was gf/cf for 3 months and I didn't see the changes I had read so much about. Sam got dairy back last week and gluten this past weekend. His tantrums are terrible on or off the diet. I am sad it didn't help because it is something I could control but it is much cheaper to be off it.
Well, we gave it a shot. Sam was gf/cf for 3 months and I didn't see the changes I had read so much about. Sam got dairy back last week and gluten this past weekend. His tantrums are terrible on or off the diet. I am sad it didn't help because it is something I could control but it is much cheaper to be off it.
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