Autism: Receiving Services

Brody was 16 months old when he was diagnosed with PDD-NOS, which is a disorder on the autism spectrum (read about how we got his diagnosis here). The doctor called it a “mild form” of autism. His hopes were that with the appropriate services, Brody would start to make more progress and “catch up” and by the time he was three years old, and maybe we would never know that he had it. It was also possible for him to be “un-diagnosed.”

Well that was fabulous news! I had every reason to believe that he was right.

The next few weeks were a whirlwind. We were assigned a caseworker through Early Intervention (EI). EI provides services for children with autism as well as many, many other disabilities. In order to be eligible, children have to be under three years old and have a diagnosis from a medical professional. He was evaluated to see what services he would qualify for and how often he’d receive them.

The outcome was speech therapy three times a week and special education twice a week. Our EI case worker, Brody’s new teachers, his daycare provider, my husband and myself had a meeting to discuss Brody’s progress and goals and an Individual Family Service Plan (IFSP) was written up.

Onward to getting this little dude some help!

Brody’s special education teacher was the “lead” teacher on our team. After a month or two, she started a program called AVB, which stands for Applied Verbal Behavior (for all intents and purposes, this is also known as ABA - Applied Behavior Analysis). To read more about ABA, click here.

Basically, Brody was not using words to let us know what he wanted – he wasn’t doing anything really to let us know what he wanted. He wasn’t pointing, grunting, gesturing or motioning. We became very good at guessing before a meltdown would ensue. The purpose of ABA was to teach his brain to use words to communicate. Brody and his teachers spent hours upon hours on our living room floor and at our daycare provider’s house every single day playing games and completing tasks in the hopes of getting him to start talking.

Something they focused on was “manding”, which is the process of getting Brody to request things. Ideally, if he didn’t have the word, they would give him the word and ask him to repeat it. Then they would repeat and give him the beginning sound and he would fill in the word. Then he would just use the word. He would be working for a “reinforcer” during this process, which would sometimes be a book he chose, a puzzle or even some food or candy.

A few months went by and it was clear that Brody needed more help than just five times a week. Special education was increased to four times a week and in March of 2013, Occupational Therapy was added to his IFSP. He was now receiving nine services a week. I felt like my house was a revolving door of teachers, all dedicated to helping our special little guy learn how to communicate, play, learn and grow. It was wonderful but very overwhelming at the same time.

As the summer neared we had a decision to make. Brody would be turning three in December and would be eligible to attend preschool. Even though he wouldn’t yet be three in September when school started, we could transition him early. In this case, all of his services would be continued at preschool with the teachers who worked at the school. Another option would be to continue with services through EI and the teachers we were currently working with until December and then have him begin preschool mid-year. A third option would be to continue services through EI until the following September (when Brody was closer to four-years-old) but have to switch our special education teacher and possibly our occupational therapist in December when he turned three because they were not certified to work with preschool-aged children.

We opted for an early transition to preschool. He was referred to the Committee on Preschool Education (CPSE) and was given an Individualized Education Program (IEP) for preschool.

Brody has been in preschool since September of 2013 and it was a surprisingly easy transition. He has a very long bus ride each day, which I’m not crazy about, but he doesn’t seem to mind it at all. A nice bonus for our family is that special education preschool is completely free (just like public school).

A few months into school, it was determined that he was having some issues with movement; running, jumping and standing for long periods of time. Physical Therapy twice a week was added to his IEP in November and he is now wearing orthotic inserts for severe pronation (flat-foot) which will hopefully help strengthen his walk and in time, the muscles in his body overall. For reasons I’m still not able to understand by doing some research, many autistic children are “flat-footed” and struggle with coordination. Music Therapy was also added once a week in December of 2013.

Even with all of the services he was receiving, he still wasn’t making the progress that we had hoped. We knew his teachers were doing everything they could, but things still were not clicking for him. We had a disappointing checkup with Brody’s developmental pediatrician and a disheartening parent-teacher conference all in the same day.

Two days later, we decided to try something drastic: going completely gluten and dairy free.

Stay tuned for Part 3 - Alternative Therapies.

4 Responses to Autism: Receiving Services

  1. I continue to be inspired by your passionate efforts in providing all that Brody needs to grow. While I can’t imagine the challenges you take on daily, I know that you are strong enough to face them head on and for that, Brody is so lucky.

  2. Inspiring! Thank you for sharing.

  3. Thank you for sharing your story. I have an 11yr step-son with Autism and I have a feeling my 10m son has it too. We should get more answers when he is a bit older.

  4. Pingback: Autism: Alternative Therapies Mama Say What?! | Mama Say What?!

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