What’s your secret?
Cathy posted about Autism Awareness Day and DanceDiva shared the information with her Dad’s wife who , "wants to know what your secret is?" I replied:
Never quit no matter how tired.
Trust your gut over the professionals. (They are guessing too.)
Research. Research. Research.
Never lunge over the table at an IEP as if you were going to strangle the idiot on the other side (it results in a much larger, lengthier IEP the next go around).
Trial and error. Lots of error.
If its not working, turn it upside-down; there might be a label.
Remember that no two people are the same and there is no checklist or cookie cutter solution that can be applied.
Take breaks for yourself.And most importantly (I mean MOST), develop a system of support for BOTH you and the child that includes friends, family, and professionals (doctors, teachers, support groups, advocacy groups,…)
Oh, and Valium or Vicodin whenever you can get your hands on it.
[Source]
I should have probably added "lots of luck" and made a note that although we are blogging about Tommy’s successes right now that he still faces many challenges. There are concerns about whether or not he has the independent living skills needed to make it in college (or even outside of the house). He still has ticks that would be worse without our constant nagging…how will those affect him in the real world? He has his quirks…a little of something has to be left with everything (particularly food); a candy bar has one last bite; a box of chocolates has one last piece; etc. Finishing is not a strong suit. Hygiene is always a concern (but isn’t it with most teens?). The list goes on. Tommy is on a good path and that makes me happy. But there was a time, the world thought he would be institutionalized (or group homed) for most of his life. So, yes, luck played a part.
April 11th, 2008 at 10:49 am
You wrote: “Trust your gut over the professionals. (They are guessing too.)”
How so very true!! I’m grateful for the ones who are honest enough to admit that to me– it makes it so much easier to make decisions when they do that.
April 13th, 2008 at 2:50 pm
I am so desparate. I am losing my son. The school will not let me know what is going on with him, will not let me have copies of records and won’t respond to if I can see them. The school’s asst. to the director of sp. ed says the school will let me know what I need to know. In the meantime, my almost 14 year old is turning into a monster. He is so biligerent. He’s great if he is getting his way but the moment you say no, he will argue and negotiate and he sort of scares me. He’s never hit me but there is something about the way he gets angry that makes me think that he could cross over if pushed. His needs are net met because I live in crappy Louisiana where no one cares. There are no services. I’ve looked. I’ve begged. I was even in USA today begging for help. I’m so sad.
April 13th, 2008 at 2:55 pm
Sheila - Please e-mail me so I can talk to you.
May 13th, 2008 at 12:19 pm
I happened to stumble upon your blog. We have an Asperger’s son, as well. He’s 16 years old and home schooled. We live in Loudon.
We face the same concerns with Chris regarding tics and independence issues. He’s determined to get a job this summer, but I have many reservations.
You’re in my thoughts.
May 19th, 2008 at 3:06 pm
If I was going to respond to the title of the blog entry only, I would say that my secret is that I write podcasts on autism to inform parents about the latest news and science on all the majory issues on autism that I have time to cover.
I write them with singer/songwriter Elyse Bruce “Quietudes” “Midnight In Chicago” “Countdown to Midnight.” She has a son with AS and got - to put it frankly- fed up with the run around she received by various agencies when trying to get information about autism and help for her son.
The podcasts at http://www.mic.mypodcast.com are designed to provide useful information about autism for FREE to anyone who wants them.