pro testing vs. school
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| Fri, 10-21-2005 - 9:29am |
Little background before I get to my question:
My DS is 5 yrs old, and while I've thought at times that he was "odd", I thought he was a very bright and "normal" child. He had some issues in daycare, and while it was frustrating getting notes sent home about hitting, I didn't make it out to be anything more than that. When he was introduced to kindergarten a few weeks ago, a whole new world was opened up to me, and I started noticing specific things at home too. Long story short, school has threatened suspension and I have had many phone calls trying to correct the behavioral issues. I actually had posted a message on the high-spirited needs message board, thinking that was his issue. Anyway, after the threat of suspension, I called my pediatrician for a consultation. We went in to see him and he said that DS has "Social Interaction Disorder" and wants Aspergers to be evaluated as a specific DX. When I told the school about the preliminary DX, they suddenly volunteered that they had an OT come in and do an informal observation and that they would pass on her notes for the benefit of my Dr. Don't get me started on how irritated I was at not being given the notes for my own benefit since we were supposed to be sharing information both ways to help Jack. Grrr.
Anyway, the school psychologist left me a message that they want me to meet with the local screening committee, for more evaluation and determination if he needs special education. I have spoken with the child psych that the pediatrician recommended and he has suggested specialized testing with neuropsychological tasks to not only give a formal DX, but to give specifics on what his strengths/weaknesses are. This Dr. is not in my insurance network (of course) and it will be hard on my budget, however, I will do anything to ensure that my DS has the opportunities to succeed. He is so bright, but I'm afraid that if he doesn't get these social issues worked out, that he might end up doing poorly in academics, and well, life in general.
My question is what is the difference between the testing that an outside professional does and the screening that the school will do? If it is really duplication, it doesn't make sense to pay the professional. However, if people have had poor experiences with the school testing results, then it would make sense to do the professional to have a confirmed second opinion.
I am very overwhelmed with everything I've learned about AS in the past few days and I'm totally clueless how to proceed. Any advice would be greatly appreciated.
Thanks,
Jenna

Jenna,
It sound like you have had to go from 0-80 in a very short time on this whole "special needs" thing. Your head must be spinning. Have a seat, help yourself to tea/coffee and cookies (Renee's, I believe) and try to catch your breath.
Neuropsych testing is expensive and there is usually a long wait. It is not ever (that I am aware) accepted by the school as a replacement for their own testing -they will want to perform that. However, If you do have outside evaluations and recommendations, they are required to take those into consideration when drawing up the IEP.
What I would probably do, in order to keep as many options open as possible; is the following:
Schedule the neuropsych testing (if you can afford it -it can run over $3000 in some places) for two-three months from now at earliest -most places will have a longer waiting list than that.
Go ahead with the school testing and results. They should complete the testing within a certain timeframe after receiving your written request, which varies by area, but usually works out to about 60 days. You can ask them what the requirement is in your area.
If you agree and are satisified with the school's findings and recommendations, cancel the neuropsyuch appt. If you *disagree* with the school, keep the appt.
That way you are fully "hedged" with least outstanding risk.
It is hard to say how detailed or effective school testing will be. It *should* be very detailed under the law, but of course applications and competencies vary vastly. My kids have been evaluated several times, both by public and private agencies, and I have had really great school evaluations and not-so-brilliant private evaluations, and vice-versa. Ya know, so much boils down to the human factor, that it is hard to say until you see.
I have concentrated on educating *myself* on what I think they need, then trying to find the agency who most agrees with me! LOL. Sounds crazy, but it has mostly worked so far. Mom knows her kids best, special needs or none, and Mom is the ONE person in this whole process who really has their very best interests at heart -above ALL other considerations (budget, personnel, scheduling... blah blah) so Mom got in there and raised lots of...
...dust(!).
Go Mom.
-Paula
I
visit my blog at www.onesickmother.com
I had the same thoughts.. but Paula said it much better that I could have!
We wondered the same thing when we started getting help with Ryan, back when he was 4. He's now 6.5 and his dx is AS. Now we went to a dev ped, but like many neuropsychs.. the waiting list in our area was 6-9 months. So we scheduled the appt, and went ahead with the evaluation from the Intermediate unit (we're in PA). We got services that worked for us, but we went ahead with the dev ped appointment anyway. He gave us a diagnosis, and confirmed that the services we were getting were appropriate. The reason we went ahead with the appt with the dev ped was because we wanted to know from the "professional" if we were on the right track.
Kate
Jenna,
We had our son evaluated at the school first, because that's where his "issues" came into play! He qualified for services, but they couldn't say for sure if he was on the spectrum or not. We had him evaluated by a neuropsychologist to confirm that he was autistic. The school then changed, on their records, that he was HFA instead of developmentally delayed. He also qualified for ESY (extended school year). This is similiar to summer school, it was to keep up his routine of going to school. (He's very routine!) They also incorporated more visuals in his classroom to help him with the schedules.
My son is in 1st grade, and I've learned that we really need to be on top of things at school. They don't always tell me things, and sometimes I'm notified about things after the fact. I also get info from my 3rd grader, who watches his brother at recess, he lets me know how he's interacting with the other kids.
Michelle
Dear Jenna,
Welcome. What a whirlwind for you, and good for you for getting on top of everything as quick as possible. If you can swing the full neuropsych testing, I sure would consider it, that is, if this neuropsych has a background in diagnosing ASD's. We also have had testing done both by school districts and privately. The school district testing was never exactly WRONG, but nowhere near as complete a picture of our son's strengths and weaknesses as the private testing we had done. And the real good that has come out of having paid for that testing is my husbands and my overview of the entire "Malcolm project", not just the decisions we made about his schooling, but also his outside therapies, friendships and social interactions, diet, exercise, yup, just about everything. And we are very glad for the input from professionals, both evaluators and therapists and teachers he has worked with.
But as Paula said, the real expert is and wil be you. Information is the real power here, and also lots of practise with following your gut. It has been my experience that the more you learn, the more clearw what to do will become instinctually. Good luck to you. This is the beginning of really being able to help your son, which is finding out his real story and capabilities!
yours,
Sara
ilovemalcolm
I am sure the other girls said this too (in a rush again, sorry)
Simply put, if your insurance covers it - do both. If not at least do the school testing.
Get the school testing rolling first. That is where at this age the majority of his supports and services are going to come from. THey have to do thier testing to qualify him and it takes some time (typically time lines say within about 60 days and they like to use all 60).
Then if you have insurance that will cover it, get the outside testing too. That will help when going to the school district, qualifying for services and coming up with a educational and treatment plan.
Renee
Jenna