Learning How to be an Advocate for my Son

I often feel incredibly inadequate to be the representative and advocate that my son needs me to be.

At his next IFSP (Individual Family Service Plan) meeting in August, we are supposed to begin discussing his transition to an actual IEP (Individual Education Plan) for when he turns three. At this time his special education services truly become focused on education (The IFSP services often also have a medical focus) and his services are provided by the school district. And I have felt so ill prepared!

This was probably highlighted for me during one of Cyrus's visual therapy sessions where his EI (Early Interventionist) was explaining Cyrus's history to someone who was shadowing her that day. She commented quickly to her companion that Cyrus had initially only received one service when he first qualified. And she said this in a tone of total disbelief, but so casually in passing - she most likely had no idea that it struck me so deeply.

In that moment, I didn't feel angry or cheated by the Regional Center who provides Cyrus his services. Instead, I just felt guilty and inadequate. The fact that she, an educator who is familiar with the world of severe pre-school eduction, thought my son needed more than he had initially been given, suggested to me that I had somehow failed to advocate for his needs.

But I also did not know how to go about changing this dynamic. I simply don't know enough about special education services to know what is out there. Even as a teacher, I'm very familiar with what services a child might receive within a classroom, but outside of that context, I know very little.

And I keep trying to rectify that. I've been asking questions since our very first meeting. "What does education even look like for a child with severe limitations like my son?"

"Well, that will depend on how much progress he makes and what he needs when he's three," was the calm and soothing answer.

Except I was not calmed or soothed. I am a teacher who has sat in on dozens of IEP meetings. I know exactly what that means. Essentially, you can't actually answer my questions less it be perceived as you promising me something.

But here's the thing. I wasn't asking for any kind of guarantee! I really am curious! I want to know. What the hell does education look like for a kid who will likely remain nonverbal? Who may not even learn to stand, let alone walk? What do you try to teach these kids?

I let it pass, figuring I could ask my own special education friends, but the thing is, I really only know the ones who work with the mild and moderate students! And they know more about high school for some reason.

In our last meeting, I pushed harder, which only resulted in Cyrus's case manager admitting that she could get in trouble for talking about the district. (She doesn't work for the district and we are pre-school aged).

I just felt so frustrated! And more than a bit paranoid as I've been coached before IEP meetings when administration was expecting a difficult parent or a sensitive situation, to not bring something up, or to reinforce a certain conclusion. I have never been part of a meeting where I felt the school didn't have the child's interests in mind, but I suddenly can empathize with the frustrated parent who is not being given the full picture.

Because it really feels like the system is designed to keep parents in the dark so they don't know what to ask for. But how am I supposed to decide whether to send my son to an SDC class or insist he be put in the county program if I don't really know what the difference is? How can I truly advocate for him if I have no idea what's out there, and the one person who is an educational expert on exactly what that education looks like is not allowed to tell me?!

This dynamic is incredibly unhealthy in my mind. This whole systemic situation tilts the relationship between parents and resource specialists/case managers more towards the adversarial side. And I think this no doubt results in more lawsuits - there are more parents convinced they are not getting the best deal for their child.

And I know that neither of these parties actually want it to be that way, but since everything is surrounded by legal documents and limited budgets, we all have to become skilled diplomats negotiating peace between two parties that want peace, but always expect to be stabbed in the back. When it should be a group of like minded natural allies who trust each other implicitly, truly working together for the best interests of the most vulnerable amongst us.

When faced with the uncertainty, I did what I always do: research! But my findings were mostly unsatisfactory. Public schools have almost nothing posted about special education. If something is there, it's about how to refer your child for testing, and there's nothing on what potential services are available. I have found private schools that have beautiful marketing pamphlets that basically say the same thing the resource manager said - that they create individual programs to meet children's needs. But do they give any examples or specifics on what that might look like? No! 

And I have found so much on the law, which says the school must provide a free and appropriate education and what my rights as a parent are, but it doesn't define what that means for children of different ability levels either (that's probably a good thing because what that is no doubt changes with new pedagogy and technology).

But I did keep getting a consistent piece of advice from Cyrus's case manager (which is how I know she really does want to help however her hands may be tied), his teachers and therapists, my own colleagues, and on the internet. Talk to other parents.

I didn't really appreciate this advice. I don't want to go to a parent group. I have a hard time socially navigating large groups if I don't already know most of the people there. And as the stereotype introvert, going to a group weekly - or simply often enough, to make yourself friends is just anxiety producing for me.

Luckily, a parent of one of the students in Cyrus's class insisted we join her in an informal mommy group anyway, just to try it. I actually already knew two families in the group and they only meet once or so a month!  And goodness knows, if we have to flake at the last minute due to a bad seizure, this group will totally understand! We've been exactly once! There were only five families there, so it wasn't overwhelming at all. Everyone was so warm and welcoming. But more importantly (at least this time) they were fountains of information!

I learned some of differences between the typical SDC class (though they change from district to district and year to year depending on needs) and the county program (which typically has students with more complicated medical needs with multiple nurses on hand). We learned that there is summer school for special needs students, but that it's only a month long, so there's still a month off where we can make our California grandparent/aunt/uncle circuit each year. I've learned that I can request to observe a class before we agree to Cyrus's placement, and that his transition meeting will probably have a dozen people there, and not to feel intimidated. (As if!)

We learned that the Regional Center and County actually have three different programs to help you take care of a disabled child: 1) Subsidized Day Care, 2) Respite (someone comes over to give you a break), and 3) In Home Support Services (we actually knew about this one ourselves from a co-worker and were able to give this information to others!)

And CCS (California Children's Services) not only provides Physical Therapy and Occupational Therapy, but they also help you get mobility equipment! We thought we knew this as they helped us get Cyrus's wheelchair and bath chair, BUT we learned they also have a program to help us obtain and/or modify a van to be able to transport him! This would be amazing for us as Cyrus is rapidly outgrowing his current convertible carseat and I was trying to figure out how to afford a minivan!

I learned more in this hour about our local school district and educational county office than I did in eighteen months of prior searching.

So maybe now, I'm feeling a little more confident and a little more prepared. Yay for parent groups! I'm excited for our next get together!

...

General updates: 
Cyrus's seizure activity has changed once again. He now seems to get an "aura" beforehand where he knows they are coming, because he will literally freak out in what I can only describe as a panic attack. Not all panic attacks result in a tonic clonic seizure, but all seizures seem to be preceded by a panic attack. His neurologist told us that the panic attack itself probably has abnormal electrical activity and may be a focal seizure. Watching him terrified is hard, but the one benefit is that we have a few seconds of warning and can make sure he's in a safe position and have the emergency meds on hand. The other good news is that the constant status events I described in my last post have really tapered off to almost nothing. His seizures now, are still every couple of days, but they have been very short, and far less scary.

In far more exciting news, Cyrus has grown increasingly social! He has shown preference for wanting to play with a particular little boy at school who is a bit older than him. Seems to be happier when he's around. He will respond when you rub his head or talk to him. When he's not teething (he's been teething a lot, but we're down to our last two molars), he loves life - he's full of smiles and giggles at the slightest provocation! And when he is teething, he consistently communicates his displeasure.

His head control, that was so gorgeous in January, but then disappeared, seems to be coming back as well. He has developed a new extreme hatred for baths and sitting in his carseat. And he has grown so much that his wheel chair had to be adjusted.

Cyrus has also been approved for In-Home Support Services, where we can hire a person to come take care of his irregular needs (things that a typical two year old wouldn't need). And in the case where one of the parents is not employed full time, you can just hire yourself! So Kyle is now going to get paid about two or so hours a day to give Cyrus physical therapy, medicine, and feed him - you know, the things he does anyway! Two hours is not a lot, but apparently Cyrus's number of allotted hours will go up as he gets older and every little bit helps!

There's a lot to be grateful for.

Where is Cyrus?