Wednesday, June 26, 2013

Be Our Guest

Years ago, I did not see the point of a vacation in a place like Disney. It seemed somehow artificial and I was looking for "authentic" experiences when I traveled. But, when my daughter turned five and was enamored of all things magical and sparkly, I knew the trip would make her happy and I was right. Watching her joy was authentic enough to make me resolve to go back again when her brother turned five a few years later.

Olivia on her 5th birthday. Sniff.
Well, life happened and things with Simon got... complicated. Our Disney plans were blown off course partially because I was too afraid to travel so far with a child that had special needs, sometimes even requiring sudden unplanned hospital stays. I also worried that with his sensory issues and cognitive delays he would be unable to participate, much less have fun. I was even worried about how we would get around the expansive park system.

'Cause I'll let you in on a little secret -- I know I make it look good, but this stuff ain't easy. Taking this show on the road can be a daunting proposition even on my best days. Some days it is a miracle if I just get everyone out the door on time, much less on a plane and into a tourist mecca.

It takes a lot more than lipstick to make this look good.

But, I never forgot the look of joy on Olivia's face and I wanted to see it again. I wanted to see it on Simon's face too. He deserves that, and so do I. 

So we decided to make it happen. And, through a little research we learned that Disney is actually very accustomed to families needing extra help. With a bit more planning and preparation, some well placed phone calls and (even more) paperwork, we were able to do Disney again in a way that we thought might actually work. 

And it did.

Doctor's note demonstrating medical need in hand, we visited guest services who cheerfully hooked us up with a "stroller as wheelchair" band and a disability pass. We were able to use Simon's swanky new special needs stroller everywhere, even on the trams.
Thanks to the disability pass, we had reduced wait times, which made it possible for Simon to enjoy the rides (and boy did he enjoy them!). 
Tigger was treated like a rock star through our entire visit (really, we were being stopped for photos and people recognized us everywhere we went). The parks have designated green spaces designed for the comfort of service dogs. He even got on some of the rides! 
I didn't even have to worry about food allergies (Simon and I both have them). The chefs came to our table and told us how Disney has taken common allergens out of food wherever possible and alerted us to any potential risk of cross contamination. In many restaurants they even offered to make us a special meal if we wanted something otherwise unavailable.

The characters took extra time with Simon. They saw that he needed it, and they got down on his level, listened to him carefully, and truly made him feel that he was really meeting the characters he knows and loves through shows and stories. When he asked Cinderella to the ball, she literally didn't skip a beat. When he told Tigger to bounce, he did!
Our big girl got some extra love as well. They knew she was clearly an awesome big sis -- she always let Simon go first and take as much time as he needed with all of the attractions. One of the best parts of the trip was seeing that she still lights up when Mickey's in the room. 
So, thank you, Disney. For the first time in a very long time I didn't feel like we were a special needs family -- we were just a special family. And because of that, I know we will be back again soon.

Thursday, June 6, 2013

How to Advocate like a Rock Star

When we exited the special education classroom the county intended to place Simon in, the representative accompanying us turned to Brian and I (who I think must have looked rather shocked) and said; "I am so sorry. I am so sorry it has to be like this. But you will have to fight. It is always going to be a fight. I hope things will get better."

Indeed, we were upset by what we saw. I won't go into the gory details, but the environment that we were sent to review was not anything like what I know Simon needs (and much less than what I want for him!). Unfortunately, we weren't being given a choice. As a kid that needs special education Simon's options are very limited. You either take what the county provides, or you hire a lawyer to fight for private placement in a school that deals exclusively with special needs (and will only accept you with county referral and therefore county dollars to follow). That option is one we are likely to explore eventually, but for now we want Simon to be with "typical" peers as much as possible, and that means public placement. 

Fighting for your child's right to be included, to have adequate access to necessary programs and tools to give them the greatest chance at success, or to simply be treated with the dignity and respect that every person deserves, is a fight that I am pretty certain all special needs parents will encounter at least once if not multiple times. You fight for it in small day-to-day skirmishes -- like reminding well-meaning people not to use the "R-word," or teaching other kids (and parents) how to interact with your child (you know, like he's a kid). Sometimes you fight for it in carefully chosen battles -- like taking on large organizations that need a wake-up call when it comes to their accessibility. And unfortunately, sometimes you realize you've just set foot in a war-torn nation where you're going to have to find a way to make a habitable environment happen -- like the healthcare system, or the realm of public education. 

We've been lucky up until now when it came to school for Simon. I just didn't realize HOW lucky we were until we saw how bad other places could be. The past several weeks have been a very distressing wake-up call on the state of special education. Fortunately, however, I'm (a pain in the ass) persistent and I kept asking to look at other programs -- even though the one we were told we had to go to wasn't right. And fortunately, I was allowed to look. Even better, I found out that though there are a lot of bad programs - there ARE other good programs, albeit fewer and further between. Once I knew this, I knew I had to fight for alternate placement for Simon. Today, I'm so happy to be able to report that we are able to make that happen.

I won't pretend to know all there is to know about advocacy, or about special education. It is a big, complicated, litigious thing and I have just scratched the surface. But, I have learned a few things and I want to share them here just in case -- like me -- you are at the scary start and not sure what to do or where to look for help.

So, here goes:

1. I've said this before, but it is worth saying again -- YOU ARE THE BEST AND ONLY EXPERT ON YOUR CHILD. You know what your child needs. You know what works and what doesn't. And, you have to admit it, at this point you have a pretty well developed "gut" sense about things (total super mom skill!). If what you are being offered seems wrong, trust that feeling. If it seems right, trust that, too.

2. Do your research. NO ONE else can do this for you. If you aren't sure about something or somewhere, insist on seeing alternate options. You can't know what you are looking at if you can't compare "apples to apples." ASK other teachers, administrators, therapists, doctors, and parents. Join all the social media groups for special needs parents in your area, attend the parties and playdates -- build your network (it is vital!) and then keep your ear to the ground so that you can find out the "scoop" on programs, teachers, administrators, etc. You can't use hearsay as a reason not to go with a program, but you can use it to let you know whether or not your gut was correct, and then you can dig deeper into the issues you are concerned about in a more informed way. 

3. Know the rules. Like I said, this is a litigious process. Ask about the rules of engagement, attend workshops, call advocacy services (there are even many free options available through therapy centers), to make sure you know what you can and can't expect. You have to be reasonable in your expectations (and yes, expecting that your child is safe, respected, and given access to adequate resources ARE reasonable accommodations to request) in order to have a chance at success. Make sure that your reasons and needs are expressed in a way that reflects exactly what you have documented (through school reports and other assessments) as what your child needs. Write it out. Provide documentation. Keep a paper trail -- no matter how many miles long that trail is.

4. Get help. Enlist the help and support of all the people that you know care about your child and want what is best for him. We were very lucky to have Simon's current school administration behind us -- their support was invaluable and I will thank them every single day. Even still, I called an advocate for expert advice, consulted with the experts at Simon's other care centers and found out exactly who to talk to "on the inside" about my concerns. 

5. Don't give up. Being persistent (as well as reasonable and polite) is key. Like I tell my students -- the only people that are guaranteed not to succeed are the ones that stop trying. That "trying" may not look exactly the way that you hoped (maybe you didn't get all -- or much, or any -- of what you wanted) but don't stop trying to make it work, talking to people, getting help, advocating for your kid and showing everyone how it SHOULD be done. All throughout this process, whenever the going got tough, people reminded me that the only way things will ever get better for all of our children is if those of us that can continue to stand up for them, as much as we can, whenever we can. Truthfully, "fighting the good fight" is hard -- it is time consuming, expensive, emotionally draining, and even disheartening at times -- but it is some of the most important work we can do as parents (and maybe as people). 

And what could possibly be more worthwhile?