Tried and Tested

Travis is smack-dab in the middle of all the school evaluations for his transition to kindergarten next year. Yes, hard to believe, but he will turn 5 in June and will be kindergarten age this fall. If only it were as easy as packing his backpack and sending him to school, like it is for nearly every other child in Florida. But, alas, just one more injustice for a child with disabilities.

For all of my friends who have beautiful, healthy children, please do not take this the wrong way, but you've got it pretty easy when it comes to school transitions. You're never questioned about your child's aptitude or ability to learn. It's a given. You sign them up and send them on. For those of us who have a child with a disability, the process is 180 degrees different.

It starts when your child turns 3 and has to undergo a battery of tests that judge their cognitive abilities, social skills, self-help strengths (or weaknesses), physical accomplishments and more. After you've went through all of that you are treated to a meeting where you and your spouse are outnumbered by about 4-5 people. You get to sit at a table and hear how the "experts" have summed up your child. I use quote-marks when I say experts, because these people do have a degree, but they only spend about an hour with your child to weigh-in on some of the most important comments that will ever be made about them. Your child's educational future is held in their hands, and honestly, they would rather you not share your input. You, the person who has been by your child's side 24/7 since the moment they were born. Forget all the days and nights spent by their side in a hospital bed. Disregard the painstaking hours you've spent in instruction from therapists, teachers, articles and research. Dare not speak of all the amazing things you've witnessed your child accomplish, because after all, you are the mother and you are biased as to what your child can and can not do.

After that reality check, you get the chance to attend yet another meeting where you are graciously offered services to "help" your child in their pursuit of education. In our case, when Travis turned three, we were extremely lucky. A whole 30min a week for PT, 30min a week for OT and an hour for speech. Wow. Though it is written in a document that is called an "Individualized Education Plan" (IEP for short) it is hardly individual. Yes, the goals on the paper are individual, but they have to be accomplished in a group setting. Ask for a one-on-one therapy session and you would think you had committed a crime. It just doesn't happen.

We were fortunate that we found UCP, a charter school, that could better meet Travis' needs. They were able to offer us smaller class sizes, which would hopefully be safer, and could give him individual therapy time. It was not necessarily the ideal place, but a million times better than the public school option. The school's assistance was a good place to start, but we continue to take Travis to private therapists and programs because we are committed to giving him every opportunity we can.

When Travis entered UCP in August 2008, he could barely walk or talk. I was so nervous about sending him to "school" that I camped outside of his classroom door every day to make sure he was okay. He actually did great at school, and gave me the chance to catch a glimpse of what he was really capable of. He adapted well, and eventually I did too, and we went about our lives choosing not to think about the day when he turned 5 and we had to start it all over again.

But, here it is. All too soon, if you ask me. The process has started again. I've been stressing out for the past two months about the evaluations and have lost sleep wondering if the evaluators will truly see Travis for who he is, and the potential he has. For those of you who read my Facebook post Tuesday, you know that phase one went rather well. The school psychologst and speech therapist started the battery of tests and spent an hour rapid-firing him with questions and commands. I was there in the corner, quietly praying, and totally amazed at my miracle. He answered their questions, and I think they were actually surprised with how well he did. I laughed because last time he was tested, he could not talk. In fact, the last eval report said he was not able to identify colors because he was not able to say their names. This time, he was able to speak easily and tell that same psychologist who told him he didn't know his colors, that the picture she was showing him was "a red airplane with an orange propeller" when all they really wanted him to say was plane.

Today he was evluated for Physical and Occupational therapy. He was scheduled for that at 10:30, and at 9:00 I got a call that they'd like to assses his vision before the PT/OT eval, and they just wanted me to know. How kind. I scampered around and got there at 10:00 so I could be a part of the "vision" assessment, only to find out they were not ready to assess him. He ended up doing his PT first, and then they kind of worked it in with the OT eval. By the time it was over he was tired, frustrated and ready to go. I was too. He actually did do well, considering all that was asked of him. I just think it was unfair to put him through so much scrutiny in such a short amount of time.

Tomorrow he will try to finish up the psychology evaluation. PLEASE, PLEASE pray for his endurance and clarity of mind. Travis' vision impairment makes intense vision work (like these evaluations that rely heavily on looking at pictures and matching things and such) very hard, and it can be physically draining. He basically sits in a chair for an hour with maybe a 5 min. break (still sitting in the chair) where he can play with a toy at the desk. I am praying that he will do as well tomorrow as he did Tuesday and finish up this round of testing on a high-note.

Why am I writing about all of this? Because 1. I need to vent. 2. I need your support and 3. I think there is a bigger issue here that needs to be addressed. That bigger issue is the unfairness and injustice that people with disabilities have to face every day of their lives. It is a constant battle to "prove" their abilities and seek to be accepted by people that would rather not take notice. These kids have to jump through hoops and play these games just to have the same access to education that everyone else has. And, for what, is what I want to know. I am fully aware that my child is not "typical." My doctors have diagnosed the issues and put it on the record. My insurance company would be able to provide you with pounds of paper that shows he needs therapy, receives therapy and benefits from therapy. So why do I have to prove it to the school board?

I guess the answer to that is, they are not testing to see if he has a diability, they are testing to see whether he deserves the right to sit in the same classroom with other children who don't have a disability. I guess it's the school's version of survival of the fittest. A chance to get rid of the dead weight so typical children will be free to learn in the most productive environment possible.

It's injust, but that's the way it is. Take it or leave it.

In all honesty, I'm probably going to leave it. I'm about 99% sure that I will be homsechooling Travis next year. That decision is for several reasons, but at the top of the list, I do not trust the public school system with my child's education. And, I'm not just saying that because I have a child with a disability. If Travis was a non-disabled child, I think I would feel the same way. You cannot convince me that a state that will allocate billions of dollars to buy railroad track in Central Florida for a commuter rail system, rather than giving an extra dime to education, has it's priorities in the right place. No wonder unemployment is in double digits and 12-year-olds are robbing convenience stores.

The only reason why I am still playing the game with these evaluations is because I would desparately like to have access to the funding that comes along with enrolling my child in school. So far, I have not been impressed with the level of quality associated with school therapy, but it's better than nothing. And, when you are working on a limited number of insurance covered visits, and a budget that has to sustain a family of four, sometimes you have to take what you can get.

Okay, so what's next. I am actually considering a few things, and I'm asking for everyone's support, prayer and feedback. I believe God has been speaking to me lately, and I'm trying to make sense of it and figure out what He wants me to do. One of the first things I have been mulling over is the idea of creating a real blog about the issue of fairness for children and families with disabilities. By real I mean one that has its own domain name, and that I can create a following around. I will commit myself to regular posts, and try to make them as thoughtful and insightful as I can. The internet has given us all a chance to make our voices heard, and I'm feeling it is time to turn up the volume on mine. When the time comes, I'd like to ask for your help in sharing my posts with others and building a community (encompassing all levels of ability) that relates, understands and accepts people of all levels. The number of children in this country with disabilities is growing at an exponential rate, and sooner or later we will all have to face the issue head-on. If God chooses to give me an opportunity to be a voice calling in the dessert, than so be it. I pray I will be of service in spreading the message that He created man in his image, and that means everyone.

I'm also considering legislative action to create new options for families of children with disabilities. For example, I'd really love to see the McKay scholarship amended to allow homeschoolers to use their scholarship money for private therapies. Again, when the time comes, I'd like to ask all of you for support and encouragement.

As always, thank you for listening to my ramblings. I want to end this entry by just reiterating how proud I am of Travis. He is totally oblivious to the politics and frustrations behind this process. Thank God for the innocense of a child.

My mother, who has empathized with me at every moment of this process, gave me a page from her devotional today that ironically was about a mother who was worried her child had a learning disability. The mom had the same fears I do, and shared the same disappointments. The answer, for her, was found in scripture. I think I can find it there to. Here's what it said:

"You will keep in perfect peace the mind that is dependent on You, for it is trusting in You." Isaiah 26:3. Leave it to God to know the exact right thing to say.

On my knees,

Christy