SOMETHING’S UP WITH JACK #4: Waiting & The Diagnosis!

>> Today will be a conclusion of the story of Jack’s assessments and diagnosis. Please note that the assessments were done in Southern California (Ventura County). If you haven’t read my previous posts on this process, please read these entries first: <<

SOMETHING’S UP WITH JACK #1: Diagnosis 1st Steps

SOMETHING’S UP WITH JACK #2: The Assessment Era

SOMETHING’S UP WITH JACK #3: Autism Assessment Details

I left off last week after Jack’s last assessment. One thing that I want to point out here is the passage of time. This process may have appeared as a busy time of appointments and meetings, but here’s how it really looked:

Our Diagnosis Timeline

January 2014: realized Jack should be evaluated, set up some appointments

February: First 5 California developmental check up

February: Assessment with pediatrician

May: Intake assessment at Tri-Counties Regional Center

May: School district assessment

June: IEP meeting with school district to discuss results

June: Psychologist assessment at Tri-Counties Regional Center

July: Assessment with occupational/sensory integration therapist

July: Evaluation with Tri-Counties medical doctor AND DIAGNOSIS

August: Jack starts OT/sensory integration therapy with private therapist

August: Jack starts school district speech therapy preschool

September: Jack gets hearing test to rule out hearing issues (he was totally fine)

September: Meeting with Tri-Counties to discuss plan and resources

September: I start attending parent support group through First 5 California/Jack gets a special helper friend to play with during this meeting time, I also attend workshops on How to Play With Your Special Child through the county

October: School district re-assessments

November: IEP meeting with school district to discuss new diagnosis, Jack starts in autistic preschool program

Jack with Dad, during the time of his assessments.

As you can see, it took nearly a calendar year to get through these milestones to a place where we were settled with the outcome. It was terribly frustrating to wait for each step to happen. During all of this time, I was reading about Jack’s behaviors and the predominant message from all sources was this: “EARLY INTERVENTION MATTERS! DON’T WAIT!” Well…here I was…waiting….What to do, what to do??

During the Waiting Game

If you’ll remember from this post, the school district assessors told me that they didn’t see autism, but they did guess it was Auditory Processing Disorder. I went home and studied as much as I could about this. I got a book from the library called Like Sound Through Water: A Mother’s Journey Through Auditory Processing Disorder that was very eye-opening. While I learned a lot about the disorder through it, what I really ate up was the story of what the mother went through in fighting to understand and help her son. It was quite disheartening to think of what might be in store for me and my family. In fact, I think it helped me early on to resolve to not let Jack’s condition consume my entire life.

However, in studying this disorder, I got more and more confused. Yes, it described Jack. But there was more to Jack than this. I resigned myself to the idea that he had this auditory disorder, BUT I decided we would need to tack on other disorders to define the inner workings of our Jack.

And The Results Come In

Enough of my stalling; it’s time for some results. First up was the school district. This was in the form of an actual IEP meeting to discuss school resources:

One big take away for me was that Jack was performing as a 36 month old (or younger) in most areas. At the time he was around 46 months old. They were very concerned about his speech and communication. The psychologist mentioned a worry about intermittent eye contact and ‘staring spells’. She knew we were concerned about autism, but the record shows she ‘did not see autism at that time.’

We were all in agreement to have Jack attend the district’s preschool program in the speech and language class. He qualified for additional occupational and speech therapy sessions as well. Just FYI, we didn’t officially discuss Auditory Processing Disorder at this meeting because they don’t diagnose it at this young age.

My husband and I left the meeting content—our son officially did NOT have the autism diagnosis we were assuming he had. He officially HAD some speech issues and those could be overcome. AND, we received a free, focused preschool program and therapy to help with his progress.

However, after some time, this outcome was troublesome to me. I kept looking up “arm flapping”, because it was a constant red flag that Jack waved at us. My research usually came back to Autism Spectrum Disorder. And the more I read, the more it fit Jack.

One thing I found to study was the Autism Speaks website. They have a resource called The 100 Day Kit, which is for parents “to make the best possible use of the 100 days following their child’s diagnosis of autism.” If you want to learn a lot about autism and corresponding disorders, check this out!! It carefully lays things out and defines terms along the way.

Next up was the meeting with Tri-Counties Regional Center:

This time we met with a medical doctor. He did a physical inspection of Jack. He had taken the notes from the psychologist’s assessment and compared them with his own observations upon meeting Jack. He knew the outcome of the school’s evaluations. He was very personable and seemed to really care and word his thoughts delicately.

I will always remember what he said and the feeling in the room. He said, “I’m afraid that we have come to a different conclusion than his school. We believe that your son does in fact show signs of having autism.” He looked sorry to be delivering this news, but it brought relief to me! My thoughts and worries were validated! This ‘thing’ inside my child had a real name!

Bring on the Resources!

Jack was given the diagnosis of ‘mild to moderate autism’. With this formal diagnosis, he could qualify for behavioral and other therapies and benefits. A new world would appear to us, beginning with a resource room outside the lobby of the office. This was where I first spoke his diagnosis out loud to a resource volunteer and she hugged me and told me of her grown, autistic son as she showed me books and videos on varying aspects of this disorder.

Jack, the preschool kid

Jack started his speech preschool a few weeks later. It was a great class, taught by a very loving teacher. I told his case worker about the county diagnosis and she admitted that after watching him in class for a few sessions, it seemed there was more to him than just speech problems.

Thus, we began re-evaluations, complete with another psychologist appointment. This woman brought out similar equipment as the other lady, complete with a doll for a pretend birthday party, bubbles and balloons, cars and flashcards. This time I was much more relaxed because I was familiar with the process.

And so, a month later we found ourselves in another IEP meeting, where his diagnosis was revised to autism. We all agreed it felt right. It sure helped to now have people familiar to him, as his days in preschool afforded them. They could now see how he was struggling.

He was switched to an every day, strictly autistic class. There were only 4 kids in his session. It was a perfect fit for Jack, with well-trained teachers and a very organized schedule of activities. He received increased speech and OT time. Recess included social skills training on the playground. And they were very understanding and helpful in navigating potty training with him.

We were now firmly on our path. We uncovered a foundation of resources that would help us get started. Everyone’s diagnosis story is extremely different, and I can only hope that in the end, these unique kids receive the support and direction they each need to reach their awesome potential!

>>Thanks for following along with our autism diagnosis story! Phew, that was a lot. Please share this post with anyone who might be embarking on the diagnosis process. It helps to know what to expect!<<