Doug & Erin have a blended family of 5 kids, ages 9-13. They received custody of Doug’s daughters, Syngapian Stella and her two sisters in August 2021. Stella is 12 years old, diagnosed in February 2022.
Erin writes on Facebook: For those struggling with the educational system as much as we are, we just had a MAJOR win for our girl. I sent her school over everything I had on SYNGAP1 and demanded an IEP review to include her diagnosis. It forced them to face that they were not equipped to help Stella, and they have now found a therapeutic day school for Stella. She can go to this school till 21!
When we got custody of Stella and her sisters, my husband and I knew we needed to get Stella the help she needed. I was now staying home full time since we went from 2 to 5 kids, and our priority was making sure she got the support she needed. We wanted her to have more than her current level of time in special ed at school with no other services. My husband had introduced me to a friend that had a daughter with BPAN, a neurodegenerative disease. She filled me in on services available, from diapers to therapies, and how to go about navigating the system.
Until she came to live with us, Stella had lived a relatively secluded life. Her main experiences in a medical setting were when my husband would drag her, kicking and biting, to her overnight EEGs. Having never been involved in the special needs community before, I went into this blindly optimistic and cluelessly unaware of just how STRONG a small child can be! Thank God for our sports wagon; it was the only way to get Stella anywhere without her sending me flying.
The first stop was getting an autism diagnosis. In Illinois (IL), autism rules the roost when qualifying for ABA and in-home services. We then found a great developmental pediatrician who diagnosed her on the spectrum and then pointed us in the direction of therapies needed. He also ordered genetic testing, which is how we came to find the SYNGAP1 diagnosis.
From August to December, the court was making us drive the girls to their schools an hour away, but we knew the transition was coming for Stella to start at her new school, which we were guaranteed would be just as good as the program she was in at her current school.
Whether you are a stepmom, Mom, or a Mr. Mom, always trust your gut. Something in me was telling me Stella was miserable in her new school. Despite not being able to tell us, she just seemed lost. Then we started getting messages from the school “Please come get Stella; she’s crying and won’t stop.”
“Please come get Stella; she’s gone through 2 diapers with poop, and we aren’t sure what to do.” While this was happening at school, we were also getting therapies denied by my husband's insurance. His union didn’t vote to have developmental treatments covered by their insurance. We got her approved for Medicaid, but in IL, Medicaid does not cover ABA.
We came to a situation where Stella stayed in a school that no longer worked with her on a PT/OT or ABA level because her IEP was only for epilepsy and global delay. We were hitting walls left and right. Stella’s aggression and fighting in the morning before school were getting worse. The system that was supposedly set up to help our kids was closing doors in her face, sending me over the edge with disgust.
While conversing with the mom of a fellow special, she quoted words that set me in motion, “No one but you will be able to fight for Stella the way Stella needs to be fought for.”
I then wrote an email to the special needs social worker at the district Stella is in and told her what had been happening in class. I wanted to review Stella’s IEP in light of the new autism and SYNGAP diagnoses added. It’s usually a 10 day wait for an IEP meeting, but I requested that they send over a 10-day waiver to be signed. Before the meeting, I submitted her new diagnoses and related information.
In the meeting, the social worker stated that an educational behavior evaluation wasn’t needed because Stella’s autism diagnosis came from a medical doctor. (This is better than anything they could have; it trumps it.)
They tried discussing a 1:1 aide in class, and I was blown away that they did not already have it in place for Stella, since she needs constant assistance. They talked more about speech therapy and bringing in someone for some PT. All these things, of course, sound great if you were a high-functioning student.
So, I stood my ground and stated that none of those things were good enough. I used the “magic word” Therapeutic Day School! In the state of IL, the school district your child is in is required to offer and or bus to, and cover tuition for, private therapeutic school if their schools cannot meet the child's needs.
Therapeutic day schools offer everything Stella needs, including PT/ OT and behavior therapies. She will learn life skills, independence, and better motor skills. They also have transitional programs for those who want to work or be on their own in a home setting. Stella will be allowed to be in this school until she is 21. She then will either transition to a home or have her home with us, as we also put Stella on the PUNS waiting list for adult developmental disability support services that will help cover the cost of in-home services.
Thank you for letting us share our win with you all. As we all know, little wins for others are HUGE wins for us!