Wednesday, March 5, 2008

HELP! Request for Information

Everyone who leaves me comments seems much smarter than me. So forgive me, but I have some questions. Feel free to ignore me and go, "Yeah? Well, I have questions TOO, buddy. YOU go solve your own mess. I read blogs for inspiration, NOT QUIZZES." Or, better yet, tell me some answers:
- Anyone out there well versed in LAUSD? (ie, anyone out there want to help me decipher the choices they're giving me?)
- So is soy ON or OFF the DAN! diet? (not that I'm convinced we have the stamina to even try the DAN diet, but it's not off the table, so to speak)
- Does anyone else's kid make up huge, long, creative, dramatic NEW stories every day? ("Suddenly, the rocket ship flies up, up, up into the sky...Boom! It crashed down on daddy's head. But daddy did not cry.") I'd pay you good money to explain to me how these epic preschool tales fit into the whole picture of a boy with serious language delays and deficits. The school psychologist just keeps saying, "atypical, atypical, atypical..."
- Can you give melatonin at nap time AND bed time, or just bed time?
- How do you find a decent pediatrician? Our asked the rooster to hug his sister, and when he did, he said, "See, he's not autistic." Now that is what I call sophisticated analysis.
- Speaking of questions, we go to the developmental pediatrician next week. It's a fortune (to us) for the initial evaluation ($2500!!!!) and we only managed to get in through a favor... so I want to be sure I ask good questions and get my money's worth! If anyone wants to suggest the best questions to ask... I'm all ears.

PLEASE forgive the neediness of the list. I'm just amazed by how much I don't know, and I do believe knowledge is power.

8 comments:

gretchen said...

Sorry to disappoint, but I don't know anything about LAUSD,DAN! or melatonin, and Henry never MAKES UP stories, he simply recites known stories, so I think the rooster's imagination sounds pretty cool.

We had a similar experience with our pediatrician when Henry was about 2.5. I went in to discuss autism- Henry clung to my neck and cried (because he hated the doctor's office), and the pediatrician told me that "an autistic child wouldn't do that." Like an autistic child has no opinion about who he likes or doesn't like. Argh. The profession has a long way to go when it comes to ASDs.

Sorry to be no help, but I'm confident some others will have lots of suggestions for you!

karin said...

Well, it's highly possible to have a cross-sensitivity between dairy and soy, so if you're going to do the gluten/casein free thing, I'd skip soy too. I had Kelly on casein free for about 5 years (18 months of which I had to be also) because of his severe gastric problems, and that is NOT uncommon for kids on the spectrum. He outgrew it for the most part, although I would think he would still benefit from it - but once that genie is out of the bag, it's REALLY hard to put back in... :-)

I don't think that gluten/casein free is necessarily the saving grace that DAN would like you to believe, but there are definitely people on the spectrum that it helps. The question is, does it help because it is helping their gastro issues (which as I said, are very common on the spectrum), and then when they feel better, they act better - or is it really having some effect on the brain. My guess is the former, but then, I don't buy into the vaccine thing either... :-)

You will find LOTS of 'professionals' that will tell you there is no possible way your child can be ASD if they can talk, look at you, ask a question, hug you, etc. However, that just goes to show that they have no clue what they are talking about, since these things (ESPECIALLY the talking) are not in and of themselves contraindicative of the spectrum. I got to the point where I was going to deck the next psych that told me it 'couldn't be Asperger's because he can TALK...' well, duh, have you looked at the DSM-IV lately?? A dx of Aspergers REQUIRES no delay in speech....

karin said...

forgot.... can't help you with LAUSD, but be sure to go to http://www.wrightslaw.com/ - this is full of info on the special ed laws and your rights under them. CA seems to be particularly well-known for trying to weasel out of them...

Christine said...

Definately a "No!" on giving melatonin at nap and bedtime. It is meant to regulate the way the body would naturally release sleep hormones on a daily cycle. Incidentally, it is great for getting on the local time if you have jet lag. ...

kristenspina said...

I wish I had something to add to this conversation, but we never pursued GFCF or melatonin. I can tell you that my son's imagination is staggering and the stories he makes up he refers to as "movies" and when he is imagining these elaborate scenarios and acting them out with his toys and his things, he demands complete silence in the house. He can't tolerate or "hear" any background noise (like tv or music).

Joeymom said...

We're not smarter. We've just been networked in longer. ;)

I can't help with the school district choices, because you didn't include what they are. I can say you should at least be asking about types of placement, one-on-one teaching (ABA, Pivotal Response, etc.), occupational therapy, speech therapy, and if rooster is having trouble moving through his environment, physical therapy. You may want to ask around to what other services others are getting, and see if any would be good for your rooster... and request them.

We don't do DAN! anything. If you mean gluten free/casein free, soy should not be a problem, it was included as a "yes" when we looked into it. (We ended up with a very hungry boy with increased stimming).

Making up stories is a way of playing with language. Its a good thing. Make sure he is not picking up from somewhere, and fitting it into context. Joey did that a lot... mostly Oobi episodes, just change the names. However, making up stories is pretend play, and thats a good strength to have. (Never fear, most ASD kids are "atypical". I have yet to meet one that was not labeled "atypical." It is as if any time they see a strength or talent, the child can't be "typically" autistic, since "typical" autistics apparently have ALL of the problems, deficits, and presentations of the autism spectrum.)

I don't know anything about melatonin. Sorry, but my little atypical doesn't do the sleep issues thing. ;)

Fire that pediatrician. When we first came back with "autism", our pediatrician also expressed shock, "because he's so sweet and affectionate!" But instead of dismissing it, she sent us on to Kluge Rehab to confirm, and went home and started doing her homework. She's gone to conferences and workshops on autism. She re-evaluated other patients and referred them to experts for evaluations. In other words, she accepted her ignorance and then did something to eradicate her ignorance. That's a pediatrician (well, actually, a family doctor). You might want to ask around other parents in your area with special needs kids.

We went to a developmental pediatrician for Joey's diagnosis. Insurance covered the visit. You might want to look into that if you have insurance- you are looking for a medical evaluation, so it should be covered by medical insurance if you have any. Are you just going to have him formally diagnosed? What will that diagnosis do for getting the rooster services? Here, you can have the child state certified, and then they are eligible for certain state programs and medicaid waivers if you have a formal diagnosis. Schools do not need a medical diagnosis to categorize a special ed kid as autistic, but it helps, especially after age 8 (soon to be age 5) when "developmental delay" can no longer be used. If having that label is worth $2500 for you, there you go. For us, it would be, it saves us that in therapy costs every year (Joey gets special ed, 60 minutes of group speech therapy and 30 minutes of OT through the school- we add on another 30 minutes of speech [we'd get more if we could afford it] and 60 of OT on top of that; trying to afford 90 minutes of speech and 90 minutes of OT would be BAD.

What questions you ask are also contingent on what you need. Can you have him evaluated for speech, sensory integration, occupational therapy, physical therapy? What educational testing should you have done? What other services does the pediatrician recommend for your child? Can s/he put the recommendations in writing for you, and include how many minutes of each therapy the child requires? What types of services do other patients receive, both medical and educational? What other conditions does the child have that could be causing autism-like behaviors, or make them worse? Should you have allergy testing done? What unique needs does s/he see for the rooster? What goals and objectives does s/he recommend? What would a typically developing child be doing that rooster is not doing? Are there things rooster is doing that typically developing children do not do, or do not do yet? Does s/he have recommendations for education and placement? Teaching methods? What consequences does s/he foresee if services are not provided? (Can all of this be put into writing, please?) I would also ask about things such as Therapeutic Listening and Brushing, which have been helpful for us. What kinds of training and counseling does s/he recommend for you as parents?

Good luck, never be afraid to ask questions (of us or the doctors, or the teachers, or... !) and just follow the stuff that seems useful for you and your family (that includes my stuff. All kids are unique. What works for Joey may not for the rooster, and vice versa!)

Niksmom said...

Joey's mom touched on a number of excellent things to consider. I'll add some more (in no specific order, BTW):

Finding a good pediatrician? Ask other moms w/kids who have any "special" needs (health, developmental, etc.) if they like theirs, if they feel heard, respected, trusted as part of the care team. We've been really lucky, so far. Don't be afraid to shop around and ask to set up an initial consultation/interview w/a doc.

Melatonin - only use at bedtime.
GFCF diet - you'll only know if you try it. There are some good resources online for basic information. We tried it w/Nik (back when he was eating by mouth) and DID see a difference. He's still mostly GFCF but not as strictly since we're trying to get him to start eating by mouth again. I try to follow a GF/mostly dairy free diet but that's b/c it affects my sinuses and I get joint inflammation.

As for LAUSD, are you familiar with mamasource.com? It's a networking site that can be tailored to your locale. Might be worth checking out to see if you can connect with other LAUSD moms? You might want to check out this blog: http://www.vickiforman.com/
Vicki has a son with special needs and is in the LA area. She may be able to help you connect to some resources and/or additional support. (I will email her and let her know I sent you.)

As far as the evaluation goes, I think the most important thing I could tell you is to go in clear about Rooster's strengths and abilities and hold on to those. Look for (and ask for) ways to capitalize on those. The doc will be looking at/for deficits and needs as well and should be able to make some recommendations as to whether Rooster would benefit from certain types of services/intervention. Our DevPed always has her "team" (PT/OT/SLP)do a separate evaluation and then they discuss Nik before they write their final report and recommendations.

Ask about SPECIFIC goals/milestones that you should be looking for/working toward in a given time frame. This gives you a good frame of reference for measuring progress/regression (if there is any).

Take lots of notes and ask them to repeat anything you didn't catch. Ask them when you should expect to receive a written report with BOTH medical and educational recommendations (as appropriate).

You've mentioned Rooster has had eye surgery. Is he visually impaired in any way and does he receive any sort of therapy/treatment/follow-up through either school or another agency? You may wish to address that w/the DevPed. too. Ask about anything and everything that comes to your mind...and know taht you will not think of everything all at once.

If the doc is costing that much, s/he should do a phone consult follow-up once you receive the written report. That will give you a chance to go over the report and come up with any other questions.

Just keep breathing and loving Rooster (and your daughter, and each other)! It's a process, a journey. Sometimes it will seem like there are a lot of switchbacks on the trail but you will still be moving along the path. No need to try to cram it all in at once...we tried that for a bit and it really didn't work. Leave time for your family to be a family.

Sending hugs.

Special Needs Mama said...

Hi there! I came here via Niksmom. I'm in the greater LA area and would be happy to email directly to talk about some of this stuff, specifically pediatricians and LAUSD.