Hellobee

This is part three of our interview with  mamapink who shares a glimpse into life raising her daughter Ayla who is on the autism spectrum.

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Can you tell us a little bit about the therapies your daughter received? 

Ayla was 16-17 months when we started the Early Intervention process, and she started receiving services when she was 18 months. We ended after only 8 sessions because she cried hysterically throughout every single session and would get sick afterwards. We re-started EI when she was 2 1/2 after she received her PDD-NOS diagnosis, but she only had about 3 and a half months of eligibility left by the time services actually started because EI ends when the child turns 3.

In Early Intervention, everything happens at home, at the child’s most comfortable place. The therapists come to your home and play with your child, either with your child’s current toys or with toys that the therapists bring themselves, and through play activities they provide ways of working with your child’s weaknesses and delays. When Ayla restarted EI this past December, she was making great strides. I saw major improvements in her speech as well as in her behavior overall. I was ecstatic! I could see a gleam of hope that she could turn into a “typical” child soon! Then we had a 4-day break in EI services due to changes and scheduling issues and she regressed! She stopped trying to speak in sentences, she went back to grunting, tantruming, her repetitive speech and echolalia was back full force, and the most frustrating part was that she started showing stimming behaviors such as spinning, tip-toeing and some flapping behaviors that she had never shown before. That was a result of just FOUR DAYS of no EI services. Time is crucial. We cannot stress that enough.

She first received Speech Therapy twice a week and Developmental Intervention twice a week. At the time of her EI evaluations, it was determined that Floor time would be the best method to reach out to Ayla rather than strict ABA (Applied Behavior Analysis) therapies because she was verbal and high functioning, even though our developmental pediatrician recommended ABA therapies. Floor time is a therapy method that addresses speech, motor, cognitive and behavioral skills through play activities at the child’s level, though not necessarily on the floor, while using ABA techniques when deemed necessary. However ABA therapy is widely accepted as one of the most effective ways of getting significant results with children with autism, whether they are low functioning or high functioning. It is also scientifically shown to improve children’s outcomes so it is usually highly recommended for children either on the Spectrum or labeled otherwise, as well as for children who haven’t been labeled but have other developmental delays.

We coincidentally met Charlie and Olive on Mother’s Day at the Brooklyn Children’s Museum! Here are Charlie and Ayla running across the bridge.

Which therapies were the most effective?

Honestly I thought Speech was going to have more of an impact than Developmental Intervention, but I’ve noticed that it really depended on the compatibility of the therapist and the child. We had a great knowledgeable Speech therapist through EI, but she did not click with Ayla right away. It took some trial and error with regards to her approach to actually getting Ayla involved and interested, but in the end it all worked out. On the other hand when I first met our DI I thought her style wouldn’t be a good match for Ayla because she seemed too aggressive and strict, but Ayla loved her right away and she would become a different child whenever she was in front of the DI therapist! Due to this chemistry with the DI, Ayla made great progress not just developmentally but in her speech as well. I should say that through EI therapies Ayla can now speak in 5-6 word full sentences, she learned how to request things instead of grunting or pulling/grabbing, she learned how to answer questions when there used to be no back and forth conversations before, she learned how to share and take turns, among many other things that she wasn’t doing or able to do.

If you do not think a certain therapist is a right match for your child, do not hesitate to ask your Case Study Manager for a change in therapist. Though it depends on your case manager, changes in your EI services usually take a very long time so the earlier you speak up, the faster the changes will happen and less time will be wasted in getting the proper therapies for your child.

Since her initial EI evaluations, Ayla has actually developed more sensory processing issues and her fine/gross motor skills need some more help, so I will be looking into getting her ABA, Occupational Therapy, Physical Therapy and Speech therapy in the future.

What challenges have you faced advocating for your daughter and the services she needs?

We currently live in a city where special education preschool is only a half day engagement. A half day in this particular school is only 2 1/2 hours, and Ayla gets pulled out of her class twice a week for a 30 min speech therapy session. That is not enough exposure/therapy for a child with autism in our opinion, as well as that of our developmental pediatrician and our EI therapists. However because Ayla is considered high functioning, our city’s school refuses to transfer her out of district for a full day preschool at their expense. New Jersey Governor Chris Christie has been cutting education budgets across the state, so our school district probably didn’t even have the funds to transfer Ayla out of district.

Another challenge we faced was when we were first developing Ayla’s IEP (Individualized Education Program), the school wanted to put Ayla in their lower functioning class even though Ayla was clearly high functioning simply because their high functioning class was supposedly full. We hired an advocate to mediate between us and the school board in convincing them to put Ayla in the higher functioning class. She has been placed in the higher functioning class, however she is still only receiving 2 and a half hours of preschool exposure and not enough necessary therapies (no OT, no PT, and no all day ABA-based preschool). We have looked into private Autism schools, however most of these private schools’ yearly tuition runs upwards of $80-90k! Our next best option is to move to a school district that provides free full day special ed preschool. These are one of her critical years, especially as a child with autism, where continual and consistent therapy is necessary before the age of 5 to prevent regression and that is why we have decided to take such drastic measures.

I’m sure it depends on the school district, but from what I have been learning, advocating for your child is definitely not an easy task. You will need to equip yourself with all the proper laws, regulations and parental rights in order for you and your child to not be taken advantage of by the system. Not all schools will be willing to provide all types of therapies right away unless your child is severely autistic, or you have proper paperwork (recent evaluations done by credited professionals, etc.) proving that your child definitely needs these therapies, or you request in writing to the school for formal evaluations to be done. Most parents of special needs children will have to advocate for their child’s needs each and every year when they review their IEP’s with the school board for the following school year. What the school may provide or is able to provide might not be what you, as a parent, think your child needs. A lot of parents of special needs children pay out of pocket and or pay insurance copays for private therapies outside of a full day special ed school to make up for insufficient therapies provided by the school district. I believe that’s a very common scenario in special needs families.

Do you have any advice for parents that are considering pursuing EI?

My advice to parents considering EI is to not delay. Do not use the “wait and see” approach that I used. Do not always trust your pediatrician 100%. Sometimes, or most of the time, as a mother/parent you know more about your child than your pediatrician who sees them for only 10-15 minutes per visit. Doctors might not see the subtle signs or delays that you may notice. A mother’s instinct is strong. If your child is showing delays in more than one area, then please do not hesitate and seek EI services. I think if I hadn’t stopped EI services when my daughter was 18 months old, she might have had a better outcome today. I most certainly believe so. Perhaps she might not even have a diagnosis today had I continued and toughed it out when she was younger.

The earlier you start, the better. That is why it is called Early Intervention! The earlier you catch whatever delays or conditions your child might have, the better the chances of improvement in their lives/future. It is not an embarrassing thing to pursue Early Intervention. Though in our case it wasn’t fully paid for by the state, it was more than worth it. They are invaluable! In the end, even if your child is not on the Spectrum or labeled at all, EI can only help them advance. It can do no harm.

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Has your child received Early Intervention Services? Please share your experience in the comments!

In the next installment, Jen shares more about Ayla, and some of the breakthroughs she’s had.