Thank you so much for all the replies. I had a mishap with the
computer and just lost my post in cyberspace, so I will try this
again.
To begin, I probably should change my e-mail/user name since it is
from my pre-marriage and pre-kids life, and Georgie is actually the
name of my now deceased cat (LOL). Ironically, my cat had
autoimmune issues and had to take prednisone everyday. The vet said
it could have been caused by a bad reaction to his shots and
actually told me not to vaccinate him anymore. I wish I thought
more about vaccine damage at the time and took caution with my kids,
but I didn't. I trusted his pediatrician and as a result my son
regressed after his MMR at 15 months.
I want the autism diagnosis to be wrong SO badly, but it is not. My
son (his name is Jon, btw) is moderately autistic. We have some
verbal and visual stims, feeding issues that are now pretty much
resolved (yahoo!), and we work on things like eye contact, pointing,
and responding yes/no. I remember talking to therapists when he was
three about working on waving bye bye and responding to his name,
and it was so surreal. Jon did both of those things effortlessly
when he was just twelve months old ... is this MY Jon we were
talking about? How could this be? Autism is cruel.
You asked for more information about my son. Jon is sweet, funny,
smart, and adorable. My first concern with him was because he would
gag on the slightest food texture. It was as though he didn't know
what to do with his tongue. He had feeding therapy for awhile and
then one day he just started eating properly.
For some reason I just thought, oh now that he eats he will be able
to talk. Well, he has been in speech therapy and OT and music
therapy and gets ABA but the speech is still such a struggle. We
have seen progress, but it is so slow. He does say some things (ex.
can label shapes, colors, letters, numbers, body parts, animals,
foods, etc.) and will make some simple requests like 'go with me,
open, help me, go up'. The hardest part is understanding him. He
sounds like he is deaf when he talks and makes lots of phonological
errors. He is consistent with his mistakes for the most part and
does seem to improve to modeling.
Concerning therapy, I actually just set up an apt. with Talk Tools
to have him assessed. I am very eager to see what the evaluation
shows and to have him finally work with someone who knows about
programs like PROMPT and Kaufman. Also, in regards to DAN, I have
been to four DAN doctors (two well-known), but I cannot seem to find
a fit for us. Jon is so sensitive to supplements, and he can never
handle the mega doses they want him on. If anyone knows of a DAN
who will do phone consults, knows their stuff, and is less
aggressive in their approach, please send their name to me. I have
thought about chelation, but right now I am just so confused and
scared out of my mind of harming Jon even more. I read on some
lists how oral chelators are best/safest and then I go to DAN and
they tell me not to do oral but suppository or IV to bypass the
gut. I read the EDTA is the safest and then I read that it can
cause harm if used on a child with mercury. My mind is like a see-
saw ... I am afraid to do nothing yet afraid to make a mistake. If
only there was some consistency. The more I read and research, the
more confused I become.
I did try CLO in the past but I did not do the EFA in the proportion
they speak about on this list. I did decide to start supplements
out again, one at at time, one a week (since my son is so sensitive)
and plan to start with the EFA and vitamin E. I know he is very
reactive to food as well, and am trying to gradually work into the
SCD (now gf/cf).
Anyone still reading (LOL)? Thank you so much for the offer to
help. I appreciate any advice, biomed or therapy. Sometimes I feel
so strong like I can take on autism and win, and other times I just
want to curl up in a ball and cry. I NEED to find my son ... he is
in there, and time is ticking.
Thanks.
Michele
--- In childrensapraxianet
<kiddietalk@
>
> Hi Michele and welcome!!
>
> Tell us a little bit more about your son. Diagnosis vary depending
> upon where you live -what professional does the evaluation etc. We
> have parents in this group who have a child that received
completely
> different diagnosis from different professionals in the same
month. Then there are
> some here who have children that were at one time diagnosed as
autistic
> or PDD that later found out that was a misdiagnosis, or who then
> started their child on fish oil and the child appeared to drop
some symptoms.
> If your child is communication impaired even with one of the most
> severe impairments such as apraxia -there's so much hope for
complete
> mainstream in school and life. The two conditions where the
> prognosis may not be as bright are for those with a diagnosis of
severe
> mental retardation, or severe autism -which in my opinion isn't the
> same thing as what most of the children with "autism" have today.
> Most in this group that have children diagnosed with autism fall in
> the range of mild to moderate autism.
>
> As far as IQ -we make sure the verbal disabled are tested
appropriately as most are not.
>
> I just posted a recent update of my son Tanner who is now 11
> http://www.debtsmar
even
> after months of therapy he was diagnosed with severe profound
> apraxia -dysarthria -sensory integration dysfunction -hypotonia.
> That didn't even include the later constipation issues we dealt
with
> for years. Just about all of it's resolved now- but his story as
> well as the stories of so many more just like him -one success
story
> after another -are in the archives here. There are many in The
Late
> Talker book as well -and many of those stories are pulled from the
> parents here. (with permission of course!)
>
> In general prognosis depends upon getting an appropriate diagnosis
as
> early as possible for therapy to be started as early as possible.
> Amount of diagnosis and severity of each. Cognitive ability and
> motivation. Amount of appropriate therapies.
>
> The fact that you are here in this group and your child is still so
> young -it's obvious he has an incredible mom who is doing all she
can
> to find out how to help him best early -and you are in the right
> place! This happens to be an intelligent group of parents and
> professionals who don't accept "never" or "slow" or "he can't" -but
> when we don't hear what we want for our child start blazing our own
> trails to success that others are finding and following. This is
an
> uncensored group in that all views are shared -so while it may at
> times be obvious we don't all agree -as the list owner I don't
decide
> that only my views are expressed. We all continue to learn and
grow
> to help our children and each other. And it works. The success
rate
> in this group is exceptional -check the archives.
>
> So again -tell us a bit more about your child (Georgie?) other than
> his age and diagnosis so we can perhaps as a group offer
suggestions
> that may assist both of you to a brighter future!
>
> =====
> Lisa Geng
> President CHERAB Foundation
> Communication Help, Education, Research, Apraxia Base
> http://www.cherab.
> Co Founder Speechville
> The Pink Mission
> http://www.thepinkm
> 772-335-5135
> "Help give our cherubs a smile and a voice"
>
> --- In childrensapraxianet
> <babyjjmama@
> >
> > My son is four and has autism and probably apraxia as well based
on
> > his trouble with articulation. His speech is slow to come and he
> is
> > hard to understand. When he was two and even three, I didn't
worry
> > too much because I felt he was still young. However, now that he
> is
> > over four, I am starting to worry so much more.
> >
> > I was wondering if this is still pretty typical for a child with
> > autism and if he can still develop normal speech (conversational)
> or
> > if his chances of that are now pretty small? Do most kids with
> autism
> > that do converse usually have more speech at his age? He is only
> > labeling and requesting but often needs lots of prompting.
> >
> > Sorry, I am the worry type and this whole autism/apraxia thing is
> so
> > hard on me.
> >
> > Thanks.
> > Michele
> >
>
New book on late talking! http://www.speechville.com/late.talker.html
Information shared here is the personal opinion of each member. CHERAB accepts no responsibility for the opinions and information posted on the list by its members.
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