The Advocate: Janet’s Story

By Helen Chou, FCSN Voices Reporter
This article was originally published on FCSN Dream Builders, June 2019

Parent Sharing: Janet and Jasmine

Jasmine was diagnosed with autism and chromosome balanced translocation. Currently 21 years old and attending post-secondary in Santa Clara County School District, Jasmine is non-verbal and uses a device to communicate. Since Janet–Jasmine’s mom–retired from her job last year, the two have taken several cruises, traveling to New England, Europe, and Japan with other special needs families.  While she currently leads a rewarding and leisurely life, Janet says it took hard work to reach this point. Janet tells the story of her experiences overcoming various challenges.

Challenging the School “Experts”:  In Janet’s Words

When Jasmine was 3 years old, she was severely cognitively-impaired and was placed in the early intervention/Special Day Class preschool program. Citing a lack of Jasmine’s progress after 3 years in the program, the director of special education and the ABA provider from the school district suggested discontinuation of therapies and instead recommended one-on-one care for Jasmine. This did not sit well with me. Jasmine was so young, and for them to make the judgment that she cannot learn so early on in her life was not right. So I decided to investigate myself. I told them to give me 3 months before we made any decision. Taking inspiration from my FCSN member friend, Kaili, I assembled a private team to work with Jasmine. I hired Kaili’s Applied Behavior Analysis (ABA) supervisor and a team of college students to work with Jasmine.  After the team worked intensively with Jasmine for 3 months, Jasmine learned to identify colors by successfully sorting them into the correct bins according to instructions. I was able to provide data to prove to the director of special education that Jasmine could indeed learn. Through this opportunity, I not only learned to confidently advocate for Jasmine, but also formed my team which has been instrumental in teaching Jasmine beyond school hours. 

School District vs County Program

Even after Jasmine made progress in learning, the public school program still was not suitable for Jasmine’s educational needs. The school district mainly worked with higher functioning kids, but kids like Jasmine whose needs were substantially different were mostly neglected. After I raised my objection and demanded that Jasmine have the right to receive a meaningful education and not just receive daycare, we were offered the Santa Clara County Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH) Program. This county program which was better funded and had more resources for kids with higher needs, turned out to be a much better fit for Jasmine. Here Jasmine met an excellent teacher who was very experienced in teaching kids like Jasmine, and with the right teaching method Jasmine was able to make tremendous progress within a short period of time. Another benefit is that both school district and county program-related representatives attend Individualized Education Program (IEP) meetings. Moreover, in our experience the County Office representatives are more willing to work with parents’ goals and are more respectful of parents’ opinions.  

If your public school program is not suitable for your child, don’t be afraid to raise your concerns and request to observe different programs. There are many options, including County Programs for higher needs kids or kids with behavioral issues, private schools that cater to specific behaviors, even institutions that may address violent behaviors. Having said this, there are parents who want to place their kid with higher functioning kids in the hopes that they will become higher functioning themselves. My advice is to not fall for the myth. Challenging your kid at the appropriate level is good, but placing her in an environment where she doesn’t understand what’s going on most of the time actually deprives her of the opportunity to learn meaningfully and ultimately is detrimental to her confidence. Every kid is different, and you have to really evaluate what kind of setting, what kind of learning environment, and what kind of teaching style best fits your child.

Data is the Key 

When Jasmine turned 18, it seemed that her potty training had regressed. She would not initiate that she needed to pee and would frequently wet her pants. The school nurse requested that Jasmine put on adult diapers. Not one to easily take them at their word, I asked for 60 days of data showing who took her to the bathroom, what time they went, and whether or not she did it. I told them that after 60 days if she still peed in her pants, then I would let her wear diapers. After I requested that they log the data, there were no more accidents. It turned out that she just needed the aides to routinely remind her to use the bathroom.

Best Practices

I have always chosen to work very closely with Jasmine’s teachers and therapists and view them as allies with the same goal of helping her learn. I trust the teachers to teach Jasmine during the long hours she goes to school. In return, the teachers appreciate that I make an effort to update them on her progress, discuss with them her challenges, provide input on IEP goals, and continue to teach her at home. Yet even in healthy collaborative partnerships, there are times when we have differences of opinions, and a lot of these times are during IEP meetings.

A lot of parents are weary of voicing their concerns during IEP meetings because they don’t want to sound too demanding or appear confrontational for fear of reprisal. This fear is unfounded; in fact, teachers are usually glad to know what parents want for their child. As long as you remain calm and respectful of the teachers, most of them will try to work with parents’ goals when resources are not an issue. When opinions differ, remember that data is your best friend. You can request data. You can provide data. And if you end up in court, data will be the determining factor. 

Make sure that you send a 24-hour notice to voice record all IEP meetings. Having an audio record ensures a more professional tone is set during the meeting and holds the attendees accountable for their words. Knowing that their words may potentially be used as evidence on appeals in court, they are more mindful with their words and demeanor, which paves the way to a more productive, efficient, and agreeable meeting. There were a few instances where I did not voice record some meetings, and as a result of the casual and careless choice of words, the tone of the meeting became unpleasant or even accusatory. I look at voice recording the meetings as insurance for having a professional discussion. 

Lastly, but most importantly, establish your network of friends. I have benefitted so much from having a group of friends I can bounce off ideas, from discussing IEP goals, potty training strategies, even travel tips. Through sharing experiences, maybe others can offer their experiences that can solve your problem, or maybe you can enlighten somebody else who is struggling with an issue you have experience with. It takes a village to raise a child; it is even more evident when you are raising a child with special needs. It is important to know that you are not alone in your struggles. 

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