What Am I Doing?

I'm discouraged.

After our wonderful, inclusive pre-K program last year, I slipped into thinking that a positive long-term educational experience might be possible for Collin. The teachers and administrators trusted that we knew Collin best. They listened to our input and acted on it. We all learned together as we went, asking questions and adapting as needed, thus creating a mutually beneficial learning environment. 

Some people hint that I'm being naive when I explain what I want from Collin's school experience, but I'm not; I've seen it.

However, every step since our first contact with the public education system has been a fight. Every answer is no. My calls aren't returned. Every 'authority' throws up his or her hands and claims there's nothing they can do. The advice I'm getting from other parents and experts involves filing official grievances and contacting professionals. I haven't been squeaky enough, they tell me. 

But as I read books on special education law, pen letters, and make lists of people to call, I find myself asking: What am I doing?

One part of me says: It's Collin's legal right to receive a free, appropriate public education and I dare somebody try to keep him from having it. I will not allow my son to be placed in a certain school or classroom or situation just because it's cheaper or more convenient. I will not give up on the idea that I can send him to his local school without fear for his safety. I will not let go of the image of Collin surrounded by typically developing peers with every support he needs to be integrated to his fullest potential. I will not accept reasons like "policy" or "protocol". I will not defer. I will not be put off. 

But another part of me asks: Why am I really fighting this? Just to win? Will Collin be getting anything better from the public schools than he would get from a combination of homeschool and community activities? Is this battle for Collin, or for the principle of the matter?

I don't know. And I don't know how to sort through the questions and motives that inevitably surround an issue like this one. For now, I am taking small steps in both directions. I'm flipping through curriculum books, thinking about fine motor activities, and scouting out groups of peers. I'm making calls and getting things in writing and educating myself. And - all of the time - I'm reminding myself that, either way, Collin is going to be just fine.

First Day of School

Yesterday, I got the call confirming that Collin won't be joining the ranks of other kids in our county heading to the first day of school today.

Collin dreaming of how fun it would be to go to school with the supports to make it a safe, empowering experience.

Collin dreaming of how fun it would be to go to school with the supports to make it a safe, empowering experience.

It wasn't a surprise, but it was still hard. 

According to our contact, the "powers that be" have declared that Collin must attend school (we are requesting a mainstream classroom) on his own and be observed in order to determine whether he really needs the aide we contend is necessary. Apparently, they understand that this would be dangerous and traumatic for Collin, but it does not impact their decision.

So we will keep pushing and waiting and working. We have people rooting for us, people helping us and that means so much. And it's not any one person making this process so tortuous - it's the system. But I choose to believe that there will be a day when it doesn't take favors and lawyers and research and fighting for a kid like my son to go to school on day one with everything he needs.

What Worries Me

What worries me is not that Donald Trump mocked a reporter's disability. Bullies make fun of people. It's not okay, but it's life. What worries me is how many people tried to explain the incident away.

What also worries me is how many people responded to Anastasia Somoza's speech at the Democratic National Convention with words like "sad", "embarrassing", and "pathetic". Commenters assumed Somoza was being "exploited" for "pity votes" and that she was "drug out to discredit" the opposition, when in fact she is a brilliant advocate for individuals with disabilities.

I'm not talking politics here. I'm talking about a pervasive way of thinking. An assumption that disabilities are a safe target. A norm that assumes those with disabilities have nothing to offer.  An common belief that "disability is a tragedy and disabled people are better off dead". Last week in Japan, a self-proclaimed supporter of "euthanasia" for individuals with multiple disabilities murdered 19 such people and critically wounded 26 others in one of the "deadliest targeted attacks on disabled people since the Nazis". But I didn't hear a thing about it until I came across this article about the lack of attention the incident received in the news and social media.

I visited a prospective school for Collin this spring and listened with interest as the administrator described how students from the self-contained "moderate and severe disabilities" (MSD) class were integrated with typically developing students for certain activities during the day. For example, students from a certain grade level came to the MSD class regularly to have music and sign language time. "Unless someone is having a bad day," the administrator said, dropping her voice. "If there is a meltdown happening or something, I really encourage the teachers not to let the [neurotypical] kids go in there because they don't need to see that."

This was a person who saw herself as an advocate for students with disabilities, in a school lauded for its special education program, talking to the parent of a student with multiple disabilities. I was surprised. More so, I was alarmed. The message seemed to be that those who are different should be hidden away because they are disturbing. It's bad enough for such an attitude to exist, but it's worse to teach it to the next generation. 

And the fact is that kids DO "need to see that." 

In Collin's pre-K classroom this year, there was Collin with his wheelchair and his feeding tube and his unfamiliar movements and lack of speech, and there was a boy with an autism diagnosis. Both Collin and his friend were fully integrated into classroom activities. It wasn't neat or easy all of the time and many of the other kids were unsure or uncomfortable at first. But together, the teacher and Collin's aide created a place of full acceptance. This allowed space not only for the differences of some students, but also for the discomfort of kids learning about those students. By the end of the year, those kids barely batted an eye when Collin or his friend had a "bad day" or needed something particular. They set a beautiful example for both kids and adults without even knowing they were doing anything special. What started as something foreign had become their normal. 

I can't help but think that a world with more environments like that pre-K classroom would yield a population who would react very differently to a speech like Anastasia Somoza's. 


How Much Therapy Is Too Much?

When your child is living with a rare disease, therapy is most likely a necessity. Collin started feeding therapy at three months old and over the next few months we added physical therapy, occupational therapy, vision therapy, and nutritionist services. For the first few years, we had a therapist in our home almost every day. When Collin aged out of Early Intervention at three years old, we started spending our days driving all over the region to therapies galore.

Somewhere along the way, I made a shocking realization: there is such a thing as too much therapy.

I remember racing cross-county from one therapy to another one fall day, chewing my lip in anxiety because Collin didn't seem to be making any progress. He might have even been regressing. What was I missing? Did we need to add something new? Do an intensive program?

But then the holidays came and people's schedules collided and we ended up missing every therapy for almost a full month. We did his exercises and stretches, but mostly we played and cuddled and watched Christmas movies. And Collin lifted his head while laying on his tummy for the first time ever. 

Collin has always been my best teacher. Here's what he taught me: therapy is a tool. One tool in the big, big toolbox we draw from to build happy, healthy childhoods for our kids. Like doctors, therapists are resources. Their expertise is so valuable, but our job as parents is to gather their insights and instructions and take them back to be integrated into our daily life. The measure of therapeutic success isn't how many times we attend therapy, it's what kind of a difference it is making in our child's quality of life. So, while sometimes a therapy has to happen at a certain frequency, in most situations you have much more flexibility than you might think.

Here are some questions to ask yourself to help determine whether there is too much therapy in your life. Ask yourself these questions every so often because, you know, life happens.

1. Is my kid stalling out? Of course, lack of progress and regression can be due to lots of things, but this is an easy place to start in figuring out the source. Kids need time to integrate what they've learned in therapy, which can't happen if they're going all the dang time. You might be amazed at what develops when your child has down time to play and explore. But my kid doesn't play and explore, you say? Well neither does mine. At least, not in the typical way. But he sure can listen to an audio book or watch a video or get set up with a toy or just be left alone for a few blessed minutes.

2.Do I or my kid dread going? OK, somebody is always going to whine (even if it's internally) about going to therapy. It's work. But there's a difference between not wanting to go and dreading it. My clue from Collin was when he started shutting down every time we walked in the door. My clue from myself was a clenched stomach and way more Starbucks detours.

3. Is it interfering with our Big Picture? You know how I feel about having a Big Picture for your kid's childhood and for your family as a whole. It helps you to prioritize when you're trying to make decisions to keep things happy and healthy. If therapy is interfering with that, something has to change. Period.

If you determine that there is too much therapy in your life right now, here are some things to try:

1.  Back Off. This seems like a no brainer, but it is HARD to back away from something you have always been told is vital to your child's well being. Maybe go from once a week to once every other week. Try it in one therapy or in all of them. See what happens. 

2. Take a Short Break. Skipping one session is not a short break. Think a month. Short breaks are easy to orchestrate around holidays. Nothing bad is going to happen if you take four weeks off, but you might be surprised at how your outlook changes during that time.

3. Take a Long Break. What if you took the summer off? Either from one therapy or - GASP - from everything? Once, I decided to take a year off from a therapy that was stressing me the heck out. It was a gut wrenching decision and I made it with the understanding that if Collin started to tank, I could start back up at any time. Big surprise: he did awesome and while I still employ a lot of the things I learned from that therapy, we haven't gone back.

The world of disability and rare disease has so little in the way of guidelines or norms. You might feel like you're flying by the seat of your pants all of the time, or like you're just trying to hang on to your sanity. So, it can be very tempting to just put therapies on autopilot and let them be something to check off The List. I really do get it. But just know that you have options. You get to make the call.