Our Journey to ABA Therapy

Our journey to ABA Therapy started probably when CiCi was 6. She is now 10.

At that time, I didn’t think that CiCi had Autism.  I did think that she had many behaviors that fell on the Autism Spectrum.  When we discussed with her teachers, therapists, and doctors…they also did not think she had Autism. We expressed our interest in ABA Therapy at that time and instead were recommended parent training followed with outpatient behavior therapy at a clinic.  So in 2013 we started parent training.  Parent training refers to involving the parents or caregivers in their child’s behavior. We would meet weekly for a few months to know and understand therapy goals, behavior plans, and strategies so we could help handle some of CiCi’s behaviors. The parent training and behavior therapy at the clinic did work..but as CiCi grew older it became more difficult to transition her out of resistant behaviors.  The behavior therapy at the clinic only lasted 6 months and then we were put on a waiting list. She was older and much heavier to carry. I started my MSN program around this time and we accepted CiCi’s behavior and utilized what we learned at parent training and went on with our life.

When CiCi was diagnosed with CASK in Summer 2016, it re-started my drive for her to receive ABA Therapy. I had many reasons to support my claim and wrote letters to her pediatricians (with medical citations and references) that CiCi is on the ASD spectrum and would benefit from ABA Therapy. Some reasons include:

1. Although CiCi is social…she is also lacking social skills. She is more of an on-looker and does not participate in games. She is better at games with step-by-step rules that involve taking turns, rather than a free for all game without structure.

2.More often now, when CiCi gets frustrated, she acts out and sometimes with aggression (and hitting). We have stopped attending some functions or leaving early because of her behavior.

3. Although she is starting to communicate, at the most she does 1 or 2 worded sentences. In conversations with her, her answers are limited to just a 1 worded answer.

4. She is overactive and running around sometimes for no apparent reason

5. CiCi seems to be actively listening, but it seems like she’s not always paying attention.

6. She has difficulty with muscle control. She has difficulty with motor skills such as climbing, balance, running, etc..

7. CiCi knows when somethings is not in order sometimes. everything must be in the same place most of the time.

8. CiCi has limited patience when she wants something. But she is more patient with other things, such as babies/special needs kids/adults

9. She does well in routine

10. She does not sit for long periods of time

11. Her tantrums are getting worse with flailing arms that seems to happen out of nowhere. We have started bringing a stroller or a wagon to take her places. She is too heavy to carry when she has her tantrum.

12. Having compression (hugs / weighted blanket or pillow) calms her down

Her pediatrician agreed with our discussion and we got the ASD diagnosis in her medical record. In order for insurance to cover ABA Therapy though we needed to get the the Autism Diagnostic Observation Schedule (ADOS) done. This is a semi-structured assessment of communication, social interaction, and play (or imaginative use of materials) for those suspected of having autism or developmental disorders.

We finally then got the ADOS done which confirmed the diagnosis of ASD.  Insurance approved her to receive ABA Therapy.  Although it took MONTHS to go through the approval process through our insurance (need approval on initial meetings, kickoff meetings, and medical review for 26 hours of hereapy)..we finally got approved it all done on 1/12/2017. We met with the care team members at the kickoff meeting  and CiCi started ABA Therapy on 1/21/2017!  Most of her defiant behaviors are at home…so her therapy will be in-house to start of! I’m looking forward to working with the team to accomplish goals so that CiCi will learn new skills, self-help skills/ADL’s, communicate her needs, develop functional play, help with transitions, etc…

When it comes to teaching/expanding on language, motivation is KEY. We will work with CiCi  to push more, to increase language, build independence, and develop functional skills. When CiCi wants something (a toy, to watch a TV show, listen to music, etc.) we will work on placing  a demand to get it. Connecting some form of communication to accessing the most preferred items, instead of giving them away for free. We will work on embedding language trials into daily activities, such as eating meals, going to the bus, and communicating self-help skills. Repetition and prompting are how we hope CiCi will respond to and express langauge.

This is just the start of our ABA Journey and this will be so amazing for CiCi. We are hopeful this will open doors of success for her!