This month, I had the pleasure of interviewing my sister, Kelly Dauer-Hubschmitt. Her four-year old son (and my nephew), Jack, began preschool in New Jersey last year. I’d talked with Kelly about the process of finding the right school for Jack, but I wanted to fully understand it from start-to-finish.
In this discussion, Kelly tells me about her initial plans for Jack’s schooling, some of the challenges she and her husband, Matt, faced along the way, and what they’ve learned throughout each stage.
For beginners or those new to the process, explain what an IEP is and how to go about getting one for your child.
IEP stands for Individualized Education Program — a document developed for public school children who require special education. The IEP is a team effort, which includes therapists, teachers and parents. Ideally, the IEP is reviewed, discussed and updated at least once a year.
What was the initial IEP process for Jack like?
Our first IEP for Jack began about 4 months before he started preschool. We discussed educational goals with Jack’s early intervention team, and then met with the IEP team to share our insights. We talked about where Jack might best succeed, including options in and out of our school district. After that discussion, we met again to review the goals we drafted.
Overall, the process was fairly smooth for us and our district was open to providing Jack the services we recommended. However, given Jack’s dual sensory disability (something our district had never experienced before), we had to “sell” services that the district was unfamiliar with, which meant hiring a patient advocate to help us fight for these services.
What type of services did the patient advocate have to explain to the district?
Due to Jack’s dual sensory disability, the advocate thought he would benefit from a nationally accredited intervener, who obtains training through Utah State University. This is a person who would work one-on-one with Jack throughout the day to provide him with information that is usually gained through vision and hearing.
Currently, only a few states recognize the role of the intervener for deaf-blind students. Other states, like our home state of New Jersey, does not. That said, The New Jersey Consortium on Deaf Blindness provides some basic training to individuals who are interested in learning more about becoming an intervener. Our district recommended providing Jack with a paraprofessional who would train with the consortium. However, this solution wasn’t good enough in our eyes. Matt and I wanted an intervener who had thorough accredited training. Unfortunately, our district did not want to pay for the additional accreditation through the university, so we had to pay out of pocket for our intervener to take the full curriculum online. She was driven, but really wanted a Masters in Speech Pathology, so she never completed the course and left after the first year.
What type of help does Jack have in the classroom now?
He has a paraprofessional who has completed intervener training through the consortium of deaf-blindness, but we’re concerned she may not continue with Jack long term, which is our ultimate goal.
Who did you look to as a resource to figure out what Jack needed at school?
While at the GFPD conference, Matt and I talked to an expert from Utah University, who runs the intervener program. She put me in contact with a family in New Jersey who has a deaf blind son, which was very helpful. We also learned that many states have a deaf-blind commission for guidance and referrals.
Once you had the IEP in place, what were the next steps? For instance, did you get the IEP, then find the right school for Jack or vice versa?
We toured a variety of schools outside of our district prior to creating the IEP. After exploring all of our options, we identified a private school that we liked best. It was one of the only schools that met most of our needs. The principal of the school was open to what we wanted for Jack, and for the most part, she kept her word. One of his teachers is a certified “teacher of the deaf,” which was important to us. And his auditory verbal therapist was already working at the school with another child who has a cochlear implant like Jack’s. We were thrilled to have her available to him. She’s well known in the field, and we’re so pleased with how she works with Jack.
What else did you like about this school?
Matt and I sat in on a class, and all of the kids’ abilities varied greatly. Right away, we thought, “this is good exposure for Jack.”
Was it easier to create Jack’s IEP this year?
To be fair, last year was everyone’s first go-around developing an IEP for Jack. His multi-sensory disorder posed a lot of challenges. We were naive on both sides of the fence.
The advocate we hired recommended official evaluations done via outside therapists to identify the right educational curriculum and goals for Jack. The district had a commitment to complete his evaluations over the summer, but they never did. The need for an accredited intervener also continues to be a constant battle for us.
What advice and/or recommendations do you have for other parents who are just starting the IEP process?
Patience! Don’t give in, because you know what your child needs more than anyone else. You can’t simply rely on teachers, therapists and the school to know what’s best. You really have to advocate for your child.
The GFPD family network is truly the greatest resource. Also, talk to other families in your area who have special needs children. You can use some of your findings to develop a game plan.
Finally, tell me what changes you’ve seen in Jack since he's started preschool?
His communication has improved. He uses a multi-communication approach through signing and modified language to identify his basic needs. If you ask him, where’s Jack? He points to himself.
I’ve seen him do that, it’s pretty cute. What else?
He can sign when he wants more food and sign when he’s full, too. He’s also using a spoon and fork. I love that he can eat a sandwich without it being cut into little pieces!
I think his living skills have improved, too.
Definitely, he’s potty training, he’s more mobile, and I think he understands more of what’s going on in his environment.
I’m biased of course, but I’m really proud of all you. To you and Matt for everything you’ve researched and advocated for, and to Jack for smiling no matter what the challenge! Thanks for talking with me.