Question:
Hi my name is Melanie, my son was just diagnosed with PDD 6 months ago.
Needless to say I am totally consumed and feel quite overwhelmed. I am
a single mom and other than my sons grandmother I have next
to no help.
After my sons diagnosis I could look back to the day he was born and
realize why things were progressing as they were. He never cooed or
reached or smiled as an infant. Had no interest in toys or the ever
expanding world around him. He walked very late and at 2 years old
still had'nt uttered one word. I was sent to early intervention and for
a year was told that my son had a behavior problem, nothing else. After
a year of a behavioral therapist , and nothing really changing early
intervention ended. Now I'm being thrown to the local school district
for a child study team evaluation. The first meeting I went to I had to
bring my son with me. We were'nt in that room for more than 5 minutes
and someone is jumping up saying "I want a neuological exam!" After
being totally interviewed I'm now being told my son has no language"it's
just not there" he has compulsive and obsessive behaviors, his social
interaction is poor. HELLO, why had'nt anyone noticed this before? I
had mentioned things to my pediatrician that I thought were abnormal
about him only to always be dismissed to say"you cant compare your chld
to other children, everyone develops at their own pace" Well when we
did go for the neurological exam I was floored to hear the words
PDD/autism, and then made to feel like I should have known this. HELP ,
everytime I mentioned anything to anyone I was being an over protective
idiot, jus looking for a problem.
Well I'm rambling now, any help or advice would be appreiciated.
One question, had my son tested for food allergies because he can't
drink milk. Tests came back negative. All other dairy products he can
handle but every time he even has so much as 1 ounce of milk he either
vomits or gets a rash. He's not allergic, to this day no one can give
me an answer as to why only milk does this to him. He currently drinks
lactaid.
Answer:
so sorry for what you've gone through. Try to stay healthy, prioritize
having fun, and eating well and sleeping when you can. As I'm sure you've
guessed, you'll run into more and more uninformed and/or resistant
professionals throughout your search for answers and appropriate services.
Sadly, most of us have to become the 'experts' and then find a way to share
our vast knowledge in a way that doesn't bruise the tender egos of the
professionals who should have taught us the information in the first place.
That means developed advocacy strategies, people skills, along with your
other expertise. Ugg, a full time job, no less.
The good news is that we're learning alot about autism..the underlying
challenges and the treatments that would parallel each and every challenge.
This is the one disability where hard working individuals with autism,
parents and professionals are believing that, regarding our expectations for
our kids, the sky is the limit. With that attitude, there are many new
break throughs every day. That's a good reason to link with the national
autism society, the society in your state, and any local autism society near
you. Member ship in the national ASA will get you a great newsletter. And,
the national and state conferences often have speakers that share the latest
in treatments. As others have said, let us know your questions. Many
times, your state autism chapters have boughten video or audio tapes of
speakers from the national conferences...and will check them out to members,
at no cost.
FYI, my daughter was misdiagnosed five times. I was lectured by
neurologists at the Mayo Clinic, in Rochester MN...that she was a late
bloomer, watch and wait. A school psychologist said that she was 'merely
mentally retarded and needed to be with her own kind.' He said I needed
therapy because I wasn't accepting her MR diagnosis. When I've told that
story in a national conference workshop that I was giving....3/4 of the
audience nodded and confirmed that the same had happened to them. The
President of the Minnesota Pediatric Assoc. once said (as he keynoted a
disability conference) that in about 90% of the cases, your dr. will not
tell you about your child's disability. He said it is a matter of their
lack of courage...having not been trained to deal with parental reactions.
No excuse!
Our daughter was finally diagnosed with autism at age 11. We lost alot of
early intervention time. But, I was thrilled to finally know what was going
on with her. Then, it took another four years of learning exactly how her
autism impacted her (social, communication, motor, academic learning
style/learning disability, sensory dysfunction, etc).....finding what
educational services would address each and every one of those needs.....and
then advocating to convince the school system to develop an IEP with all of
those services. The good news is that she's had a great school program for
the past five years, and she's made tremendous growth. This is the girl
that school people said had an IQ of 50. And, she's taking classes at the
local college, working two part time jobs, usually has at least two weekend
activities planned with school friends, and is looking forward to having her
own apartment in a couple of years.
So, my advice would be to learn alot, don't blindly trust any of the
professionals, try to find professionals who are experts in autism (check
out their philosophy...some take a 'behavioral approach' with people with
autism as they assume that they are in control of their actions and should
be punished if they exhibit any challenges, while others look are aware that
autism is a neurologically based disability and believe that appropriate
services and supports will actually teach new skills, and prevent or support
behaviors)...and push like heck to get the services ASAP (while trying to
adjust to the fact that it usually takes years to find good experts/allies,
and to convince those who are ignorant to do the right thing. Take care
