Where to Begin
Post 8/6/08 Where to begin…
I had lunch with one of my best friends yesterday and we were discussing one of our regular topics, autism. She has been supportive and listened endlessly to my stories of all my children with autism and my desire to begin an autism site. I asked her to give me 5 questions she would ask about autism.
Her response surprised me. Rather than the many topics we had discussed over the years, she mentioned, where would you begin? For instance, you are a young mom, after years of concern and worry, and have just received a diagnosis of autism for your 2 year old son.
Great question! Doctors need to start having material handy for parents when they give out the diagnosis. I remember the first time a doctor suggested my son may have some form of autism/pdd. I didn’t even know what pdd was, and autism? Heck no way. I had to do research on the net, and scramble to find books that I thought applied. When he was then dx’d by another doctor about 6 weeks later, I was again sent home with no documentation about autism, though this time I had a referral to the Regional Center (California) and the local school district. When someone’s given a dx of cancer, arthritis, bronchitis, whatever, the doctors can give them resources, information, documentation, etc. But with autism, not enough is known, and many doctors are unprepared. So, going back to my son’s dx, I’d have most preferred some comforting help along with the dx. Both our initial doctors did say “Your son is smart, he’ll have a good life, he can still go to college…” which I’ve heard is more than many parents hear from a doctor, but so much more is necessary. (And great blog!)
acollage
August 8, 2008
We all have so many stories, it is difficult knowing where to begin!
Casdok
August 10, 2008
I think the doctor’s offices are a great place to start. I have heard too stories of ‘don’t worry, boys are slower to talk, he’ll catch up, etc. We need to check out any and all parental concerns, immediately.. After all, who knows the child any better? If early intervention is our goal, the earlier the better.
Any one have an idea for providing info to all doctor’s offices?
AA2Z
August 12, 2008
What is the latest information about autism and vaccinations? My 1 year old is due for his shots and I’m nervous.
Coco Davis
August 15, 2008
I was 20 when I had my first son. He was originally evaluated for ASD but ended up with a FX diagnoses. The ASD dx didn’t come until he turned 5, though I think it could have been much earlier. WHEn he first received his dx I was lost, I didn’t know where to turn. Getting all the medical questions answered was easy , but finding out what it was like raising a FX and ASD child was hard. I think that answering the parenting questions is often more important than all the medical mumbo jumbo that is thrown at you.
Bethany
September 4, 2008
I think you are so right. Being able to sit down and talk with someone who has a little experience makes it easier to get your head together and at least know there is help out there. Most areas have parent groups that can be very helpful. I t’s nice to listen to how others handle different situations and learn of the services, people, activities, etc. available in the area. I find it very helpful to search for courses in the area, through local agencies or colleges that are available for parents and teachers. Are you familiar with CARD?
AA2Z
September 8, 2008
I’d have to say that you should tell parents to follow their gut instincts. If they think there is something that’s just “Not right” with their child, then they should push it until they get their answer. That’s what I had to do with my Ryan.
Kim
January 26, 2009
Dear Kim, Thank you so very much for finding me and getting me back into my website. I have been off line for a long time and needed a boost to get back to my first love,working with children and parents with autism.
I completely agree with you and congratulations for hanging on in there and fighting for your little one. I was always surprised when I heard doctors tell parents to ‘wait a while, he is young. boys develop later than girls.’ etc. After all, who knows the child best? I say, keep going from one professional to another until you find one who will listen and then design a program that meets the needs of the child. As we know, one size does not fit all in autism and each child deserves exactly what he/she needs. We cannot afford to waste their time, early intervention it too critical. This applies to the medical and the educational fields. Schools must meet the needs of each child, not always easy, but always necessary.
AA2Z
January 26, 2009