Loving & living with a special needs child

6.17.2000

dateline brought the whole secretin idea to my attention a few months ago. there was one problem with the story. while briefly mentioning that secretin may not be for everyone (no drug is for everyone, we all know that), they painted a rather rosey picture of secretin use for autistics. the only problem with it according to them was that it is experimental and not covered by most insurance policies.




didn't it cross their minds that there may be a REASON it is experimental?




i understand that parents are anxious to bring out the best in their children. but autism cannot be cured, we can only learn to live with it and to help the autistic child live with it. we should not jump on a possibly risky line of treatment that has not gone through the full range of testing. to do so is an injustice to the child.




but instead of level headed parents, waiting to see if a potentially dangerous treatment is actually safe and helpful, we have this. there is now a black market for this drug. black markets aren't known for quality control. yet parents are willing to risk their children and pay thousands of dollars on an untested option. and worse, "Exact numbers are unknown, but thousands of children are believed to have
been injected with the drug. Meanwhile, a double-blind, controlled study of
58 children with autism conducted by paediatric psychiatrist Dr Adrian
Sandler in North Carolina revealed no difference between the behaviour of
those receiving secretin and those receiving a placebo (salt water).
Increasingly, Internet bulletin boards are punctuated with messages from
parents disappointed that the drug has had no effect on their children." these parents jumped on a bandwagon and are now sorely disappointed. how much more diappointing would it be if it was just a loss of money? no type of therapy is without a risk, but these parents had no idea what the risks were. "Even proponents of secretin admit that some children experience adverse
effects. In most cases, this is only temporary hyperactivity or aggression, but
reports of severe and apparently irreversible damage are also appearing."




i understand we all want things to be better for our children. but we have a primary responsibility of protecting them, not of trying to fulfill OUR dreams for them. with any possible therapy, we must wait until the jury is in before we jump on any bandwagons. it is safer for us and for our kids. as for dateline...they only did what every news program does: published half researched news and then out their own spin on it. stop trying to get the public to believe what YOU want them to believe and do responsible reporting. just the facts please..ALL the facts. if the jury is out...maybe it would be better to not report it.




more reading on secretin: Secretin-Cysteine.com, Secretin and Autism

i am trying really hard to ignore my talking sone at almost 11 at ight. see, i think that constantly telling him to stop is a reinforcer...it gives him attention. so we are working on ignoring those things we want him to stop. the toy box and all the spinning toys are now out of his room as well.




he was supposed to start meds today, but the doctor didn't fax the form back to the school in time, so i get to do it tomorrow. i know they said after breakfast..but WITH breakfast may be easier...he'll be hungry.

posted by domynoe on 1:59:27 AM | note me

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6.16.2000

it is almost 1 a.m. and i am working on the lair and my thoughts are of my son. today he gets his first dose of being on medication. monday through friday the school gives it to him and chris and i will be responsible for weekends. i hope this works. some level of control would be so nice, especially after these last 2 weeks. but i also worry about possible side affects and getting him to take the medication. since it is once a day after/with breakfast, we're going to try to crush his little half a pil and put it in a thing of yogurt. he likes yogurt. i wonder how the school will manage? cross your fingers and toes for us. i really don't want to go through half a dozen different medications at several different dosages, altho i will if i must. it just would be nice if for once something was easy for him.

posted by domynoe on 3:48:23 AM | note me

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6.15.2000

hwy everyone! we're back. i am still putting up bits 'n pieces of my site so i am not sure how regular the updates will be here yet, but the pages are finally up and in working order. i apologize for the down time...it's taking awhile to get everything back up and running the way i want. (people who know me knopw how picky i am about my site. lol) but i do have an update for you!




today was kristav's i.e.p., 2 1/2 hours of an i.e.p.! i had asked for someone from the distract to be present but they failed to show. not enough warning i guess. everyone else DID show up however, so we were able to get quite a bit done. this was supposed to be his tri-annual with a number of tests in addition to the usual reports and things we use to determine his next year. however, the difficulties with him the last few weeks has made the additional testing impossible. so it became just an annual with the tri-annual probably when he gets back after the break.




there are currently no traditional track schools with special ed services available. so he's stuck in year round with an extended year. he has advanced academically, and done very well with that. he will be getting another half to full hour of speech therapy, but instead of a one on one situation the therapist will visit him during social times (such as playground time) and work with him on social speech. he also has all new goals for all areas, having not only met but surpassed every target from last year's i.e.p.




a big part of the i.e.p. was behavior...which ahs recently gone out of control again. we're not even sure why. however, we did discuss his behavior during and after his episodes and determined that he gets as upset about being out of control as we do. after almost every episode, when he calms down, he usually cries. we're going to try a few more things here at home, having the girls try to be involved with him more and that kind of thing. but we have also decided he needs to be on medication. we delayed it as long as possible, but now he's a big kid and when he loses, the danger to himself and others is much greater. he had a neurologist appointment today, and did get medication (not ritalin for him, i definately wanted to avoid that if at all possible).




so it was a big day for him. we are keeping him home for the day. his schedule has been severely disrupted and with all the problems of the last weeks i don't want to send him in to them. so he'll be home for the afternoon. tomorrow he starts medication. we'll see how this goes.




off to go grocery shopping. we'll take kristav with us. when we get back he should be able to watch close encounters, the special edition. loong day for all of us.

posted by domynoe on 5:30:12 PM | note me

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