A Meeting 8 Months in the Making

I’ve been keeping my mouth shut for awhile, but now I can open it and write about a meeting I worked EIGHT months for.  To change the Roc’s educational label from emotionally disturbed to autism.

Back in January I decided that I couldn’t live with that completely unjust label attached to my boy and I deeply regretted that I allowed it to happen.  Since he wasn’t a behavior problem in class, which was the reason I was given qualified him for the ED label in the first place, I called the schools spec ed coordinator to find out how to start the process to change the label.  We had a brief discussion on the phone, she agreed to look into the matter and talk to the school psych who pushed the ED label, and then she sent me a copy of the Delaware regulations.  After 3 weeks of hearing nothing, and under the advice of a friend, I sent a certified letter to the district supervisor of special education and cc’d the school psych requesting an independent educational evaluation.  I immediately got a phone call.  And so began the back and forth emails with the district supervisor of special education.  After a volley of 32 emails, taking up most of the month of March, she approved the neuropsych, and the speech and occupational therapists I had requested.  I scheduled the evaluations for May, the first available appointments.  The neuropsych evaluation consisted of a parent interview (the ADI-R), a school observation, and then 3 consecutive days of testing, the ADOS being one of many tests administered.  Both the speech and occupational therapy evaluations were equally comprehensive.

We got the results of all three evaluations in June.

Guess what?

The ADI-R and the ADOS concluded that the Roc has AUTISM.  Imagine that! Guess the neurologist, the developmental pediatrician, the psychologist at the children’s hospital, and the mama who knows her kid were RIGHT! The neuropsych had great recommendations and lots of information on where the Roc struggles the most, and really emphasized that his struggles are due to autism and language impairments and that he is NOT emotionally disturbed.

The OT and speech evaluations were full of awesome in-depth information on the Roc.  I sat for hours upon hours reading all the reports and taking notes.  I learned so much about the body reading the occupational therapy evaluation and was stunned to see in black and white, how dysregulated my boy is.  His auditory sensitives are huge.  He has gross motor issues that impact is ability to even attempt the fine motor tasks that are demanded of him every day.  The occupational therapist was mad when she heard that the Roc had been labeled emotionally disturbed.  She said he was clearly a boy who needed to be taught by people who understood that the behaviors he exhibits are due to sensory issues and how best to diffuse them and prevent them.

We scheduled an IEP meeting for July to go over the IEEs and I also mentioned that I wanted to discuss placement again.  We were all agreed on the Roc repeating kindergarten, but I was still doubting moving him to classroom with less support, and reading the neuropsych report furthered my feelings that he needed to be in a well supported classroom.  Then they canceled the meeting saying that since we had done the ADI-R and the ADOS the district autism assessment team needed to review the reports and view the Roc during summer school.  We rescheduled the meeting for the end of August.

Last week was the meeting, and I was well prepared.  I had a friend on one side, GC on the other, the neuropsych on conference call, and a voice recorder on the table.  I had prepared a long document supporting the autism label and I didn’t even need to reference it.  They agreed.  His label was changed to autism.  Whew.  8 months.  Many phones calls.  Gobs of emails.  Lots of time.  School missed for the evaluations.  Notes taken and discussed.  For an educational label.  A label to fit the diagnosis he has.

A wrong was righted.

But so much more than the appropriate label came out of these evaluations.  After everyone on the team agreed to the new educational label of autism, (and I laughed when we went around the table and I had the chance to say “I’ve never said it wasn’t autism, I presented my child to the school when he was 3 years old, telling you that he has autism,”)  we talked more about placement for this school year.  And after arguing with a school psych (who had never met my son, only read this one report about him before coming to the meeting) about retaining the Roc in kindergarten (a team decision made in May,) and having the neuropsych state again that moving him to a less supported kindergarten placement wouldn’t be to his benefit, we were presented with the option of having him repeat kindergarten in the very same classroom he was in last year.  20 students total, 5 identified with a need (the Roc making that number 6), a teacher, special ed teacher, and a para (who used to be a speech therapist) all full time in the room.  We agreed.  With the hope that a familiar environment with adequate support and some revised accommodations will allow the Roc to flourish this year.

Then the school occupational therapist presented her findings from the independent OT report.  She had prepared a document titled “sensory strategies for the Roc” and I knew I was going to like what she was about to say when I read that title.  She took almost all of the recommendations that the independent evaluator suggested and incorporated them into the Roc’s IEP.  We got more OT for him each week and the therapist is going to do a consult each month with the teachers to talk about what is working, what some of his problems are, and how they can help him.  So we went from hearing “we don’t do that” to sensory stuff when we entered the public school system, to getting sensory accommodations written into his IEP a few years later.  I hope everyone now understands that sensory issues are a big part of the Roc’s day, and even though he is holding himself together really well in the classroom environment, he is working SO hard to do so.

Unfortunately, the speech therapist who was present at the meeting hadn’t been given a copy of the independent speech evaluation.  I wasn’t about to sign anything in relation to his speech services until this was read by an SLP.  So we agreed to meet after school starts and have scheduled another IEP meeting to be conducted with the therapist who will be working with him this year.  I am hopeful that she will be as thorough as the OT, and take the recommendations of the independent evaluator.  We will find out in 2 weeks.

It was a long meeting, and we still have more to cover when we meet again.  The supervisor of special education mentioned a social skills program that was started last year when she was touting how “progressive our district is in regards to autism” while the neuropsych was on conference call at the beginning of the meeting.  Later, when we brought this program up again we were told that the Roc would need a referral, that the program hadn’t started yet, they didn’t know where it was going to be this year, and that we would discuss that at the next meeting in 2 weeks.  Yup, we will!  Especially when in one breath we were told it was for children with autism, and in another we were told that we would have to see if the Roc qualifies!

Hmmm…I wonder if he does???

You can bet I won’t be letting this go either.


13 thoughts on “A Meeting 8 Months in the Making

  1. Wow. Crazy, isn’t it, that we have to PROVE over and over that our children ARE as we tell school they are. I mean, seriously, who the heck ‘games” the system for MORE labels, more SpEd services, etc. Makes me sad. Also scares the bejeebers out of me as I look at the uphill battle we are facing, too.

  2. take an A, Mama. nicely done!!! and yeah, it sucks that it has to be a battle, but you handled it beautifully. the roc is lucky to have you fighting for him.

  3. Oh my gosh what a horrible thing to lable a child with!

    I just don’t understand how any one could lable a 6 year old child Emotionally Disturbed!!!

    I am so glad you have had it corrected 🙂 I pray every thing will go smoothly for you from here on 🙂

  4. I’m picturing you wearing boxing gloves right now…

    “Emotionally disturbed” belongs on that long listed of antiquated, inappropriate terms that serves no purpose. And really, why did they ever slap that label on a child who already HAD a diagnosis? I still don’t get it. Sigh.


  5. Good work Mama! I can only begin to imagine how having my child mislabeled as “emotionally disturbed” would feel. So glad you were able to set the record straight.

  6. It’s a full time job, isn’t it? In addition to the actual care & feeding and nurturing of the child.

    You are a wonderful mom. I hope you look in the mirror and tell yourself this. I hope you know this. I hope you remember this, next time you have a rough day.

    I salute you!

    ; )

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