Warrior Mom

Ty helping his dad assemble a wheelbarrow a few weeks ago.

From first glance, you wouldn't necessarily know that Ty has special needs. He's a handsome, tall, and playful kid. If you hang out long enough to hear him talk, you'd recognize that his speech is difficult to interpret. And if you paid even closer attention, you'd notice that he is easily overstimulated, escalates quickly and has a hard time calming down. But to the untrained eye, it's hard to see some of his other difficulties - he slouches, over stuffs his mouth, has a hard time holding a fork, can't grasp a crayon very well and maybe even drools a little.

Once a child who receives state services turns 3, they are terminated from the Department of Developmental Disabilities. Unless there is a clearly defined label such as autism, downs, etc... Kids without such labels often fall through the cracks. The public schools pick up where the state left off, offering special education preschool. The problem, however, is that the same services don't translate from the state program to the schools. Ty received 4 kinds of therapy with the state, now he only receives speech therapy. Obviously I requested more services for him when we enrolled him, hoping to parallel the help he was receiving from the state.

This week Ty's school called to inform me that he likely wouldn't qualify for occupational therapy, so they didn't think it prudent to give him the full evaluation. (Explanation: OT works with Ty on dealing with sensory issues, handling his over-stimulation, building muscle tone, etc...) Even though the woman that observed him read all of his reports from the state and acknowledged that he has low muscle tone, she didn't think he'd qualify for services according to the public schools guidelines. When I questioned her logic, she said that in the public schools he has to show a significant discrepancy before they address the problem. Instead of taking a proactive approach, they want to wait a year so his skills will be even further behind and then they will take a remedial approach. If that's not the lamest rationale I've ever heard...(insert swear words here). When I told Trent about their justification for not helping Ty, he said, "That's like me turning away a diabetic patient and telling him to come back when his disease is more severe." You can bet your arse that I went over the schools head to speak with the head of special ed preschool services. She gave me a very well practiced, politically charged sermon about the specifics of the state law and the fear of being audited and stated that the school wasn't required to help Ty if he can function in his classroom. Can he function in the classroom?

He freaks out when he has to finger paint.
His hands aren't strong enough to use scissors.
Drawing a picture takes ten times as much work for him as a typical kid.
Then he gets frustrated.
Then he becomes aggressive.
And he can't use his words to talk about it.

How would you feel?

We used to think his speech delay was his biggest obstacle. While that aspect is challenging, it is only a part of a bigger obstacle course for him. He has to learn compensatory strategies that will help his body find a balance between hyperactivity and lethargy.

It seems that at every turn, there is a battle I have to fight on his behalf. I am hopeful that his team of teachers and therapists will provide him with every service he deserves. I am willing to sit in meeting after meeting with a smile on my face but an unwavering request that they offer him every service he deserves. I'm not sure they know what kind of a mom they're dealing with, but they'll learn soon enough.

In the meantime, a representative from the state's long term care program came to interview us to determine eligibility for further state therapy. I know Ty is borderline, again partially because he is a gray area kid that doesn't have a specific label. We find out what their decision is in two weeks. Our former therapists have even held a spot for him in their schedules, while I hold my breath waiting for results.

The older he gets, the harder it becomes to make up for his lost time. But in my quietest moments, when I take a break from worrying and turn my heart to the Lord, I know that He will provide for my little boy. And those moments of peace help me work through all the unknowns.

And now as I said concerning faith - faith is not to have a perfect knowledge of things; therefore if ye have faith ye hope for things which are not seen, which are true.

Alma 32:21