Thursday, May 8, 2014

Julianna, Part 6: The Discovering My Voice Phase

Christmas of 2008 was approaching. We had just celebrated Blake's 2nd birthday and Julianna's 5th birthday at my grannie's house with family and had a wonderful time. Just a few days after Julianna's birthday, I got a letter from the regional center, the letter we had been waiting for that would tell us if she would get the much-needed services. Because she now had an official diagnosis of autism, I was positive it would be a yes. I was wrong again. Another denial, this time because she only had a "developmental delay," not a "developmental disability." From the letter written by "Mrs. Macon" (named changed), the program manager of intake:

"Julianna is not suspect of mental retardation, nor is she suspect of the full diagnostic condition of autism...The school felt it necessary to defer Julianna's diagnosis of autism, as there is some disparity between perceptions of the degree to which Julianna is functioning on the autism spectrum. This is exactly why Julianna was found ineligible for regional center services."

I was beyond upset. Why was it so hard to get these services that everyone else said she should qualify for? I called this Mrs. Macon and had a nice talk with her, crying on the phone, probably yelling at one point. She would not budge on her decision, but said I could appeal if I followed the enclosed paperwork. I had the school district psychologist write her a letter, explaining how Julianna should qualify, even giving the exact diagnostic codes and behaviors she displayed. That didn't help either. I felt so hopeless once again. Some of my friends with special needs children were getting all the services and therapy through the regional center and were seeing great progress. I was grateful Julianna could be in a wonderful preschool program with therapies there, but I knew the only way Julianna would potty train is if she got the services from the regional center.

Up until this point, I felt like I had gotten what Julianna needed. The school district was more than helpful. Her insurance was providing additional occupational therapy at a great office, and I would take her there once a week, hoping that it would encourage progress in many areas, including potty training. But getting denied twice from an organization that is supposed to stand by their motto to serve all individuals with disabilities just did not sit well with me. So I decided it was time to act. I was going to appeal their decision. I was going to use my voice to help my child, because if I didn't, no one else would.

Julianna with her wonderful occupational therapist
I sent in the paperwork, and was told to come back February 25th, 2009, for a "mediation" and then March 12 for the "hearing." So I made the necessary preparations, arranged babysitting for my kids, dressed the part, and arrived at the regional center on the 25th, nervous as ever. I was mostly worried that Mrs. Macon would be there, and I wasn't ready to face her in person. The regional center reps just asked a lot of questions about why I didn't agree with their decision, and I was able to answer them the best that I could. It's interesting how the words just come when you are speaking out for your child. This was the first time I had ever had to stand up to anyone to get my child help, and amazingly, it went just fine. The hearing was much the same thing, and after proving my case successfully, they agreed to have Julianna evaluated by one of their own psychologists on May 4. Appealing their decision was the right thing to do. I was confident that this psychologist would see the real Julianna and give her the services after trying for 18 months.

We got our free diapers delivered to our house when she turned 5! I was so excited about this that I took a picture.
Before the big day, I had Julianna meet with a neurologist to get a diagnosis of autism from him. I told him I was seeking regional center services, and after talking with me, and observing her, he did give her the diagnosis, on the mild side, and I made sure to bring this with me to the regional center evaluation.

The day of the assessment came, and I went to the regional center with Julianna. My mom was there to support me in this very important day. I tried my best to make sure she was at her worst behavior, because I thought that would only help me get services! But of course during the lengthy 2-hour evaluation, she was a perfect angel. She was able to complete most of the little puzzles and games he had her do. I told him all about her behaviors, tantrums, need to potty train, etc. But when it was all said and done, he walked us out to the waiting room where my mom was, and told me that Julianna did not meet criteria for the regional center, that she only had PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) and she would be fine with continued special education and therapy. He also believed she had a visual motor problem, and recommended vision therapy. As far as the potty training, to seek behavior analysis and sensory integration interventions. He even told me I was very lucky that Julianna would have a bright future and catch up, that most children serviced by the regional center were not so lucky.

So after all my efforts to use my voice and fight for my child, all I got was a new diagnosis for Julianna, a diagnosis that meant she had a brighter future than I previously thought. I even remember the drive home that day, feeling like I was on a cloud, so happy that she would be fine, she would be fine. I didn't need their help--my child wasn't one of the more severe kids that needed their help. But this still didn't solve the problem of potty training. And she was approaching kindergarten very soon. Those costly therapists for potty training only came from the regional center, unless there was another way.

Before she graduated from preschool, we had one more IEP meeting, called the "kindergarten transition." At this meeting, I felt it was important to write a letter detailing Julianna's entire history from birth, and to list some goals I wanted for her in the coming school year. They also reviewed the report by the regional center psychologist and deemed it "science fiction." They were outraged that she would be denied a second time, and had no idea what to do next. But this meeting was bittersweet, because it would be the last one I would have with her wonderful preschool teachers. I was nervous for her to start kindergarten and wished preschool would never end! But it did, and what a year kindergarten was... NEXT time you will hear about the infamous "Mrs. Fox." My problems were not over in the least....good thing I had just discovered I had a voice, because I wasn't done using it...

Julianna at her preschool graduation, 2009

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