Questions and decisions

Found this in my draft box. I guess I wrote it in August 2012, but I'm not sure.

Perhaps the most stressful part of the last 6 months was the not knowing. Without a diagnosis, we felt very much in limbo. How do you discipline behaviors that might be defiance but might be symptoms? How do you plan for preschool when you don't know his needs? The questions seemed to be endless.

In addition, we had decisions to make regarding therapy. We had options available through CDSA, but we also had a great recommendation from Henry's Sunday School teacher, who happens to be both my friend and a speech therapist at Duke. In the end, we chose my friend's recommendation for speech and the CDSA recommendation for play.

Everything was going along just swimmingly when we received a letter from Blue Cross Blue Shield. "This is not a bill" was stamped across the top, which told me we had some bad news. Although Duke had twice assured us our insurance approved speech therapy, BCBS was now saying my plan did not approve speech therapy for developmental delays - only medical conditions. Apparently, the insurance person at Duke made a wee mistake and neglected to see the special exclusion on my policy. Well, fabulous. After almost two months of therapy, we had an enormous bill at Duke.

After some rapid research (thank you, Keith) and hot, angry tears (that would be me), we found a private therapy agency that would cost 1/3 the amount Duke charged us. I hated to move Henry to a new therapist when he was making such progress, and especially since he does not like transitions, but we had no other choice. To pay the full price for Henry's therapy at Duke would cost more than my salary even when I was full-time! The silver lining in the ordeal was the gracious man at Duke who admitted it was their department's mistake and said Duke would therefore absolve us of our bill.

Praise God from whom all blessings flow.

Everything worked out ok. Henry loves his new therapist. "Mama, love Janet," is a regular phrase around our house. She is kind and flexible and has noticed progress in only a few weeks. Our play therapy ended when Henry turned 3 and aged out of the CDSA, but Kristie was a great therapist too. She was as much support for us as for Henry, always answering our questions and having a wealth of knowledge to comfort us. In fact, she asked us to keep her updated on Henry.

When Henry turned 3, we were faced with new choices. Just as we had him evaluated with CDSA, he was re-evaluated by Durham Public Schools. He was also tested for autism. (As I said here, at age 3 children with special needs are eligible for services through the public school system.) When the tests confirmed his autism and need for services, we developed an Individualized Education Program (IEP). Though the professional team makes recommendations, the parents are part of the IEP team as well, and we had the final say-so in Henry's care.

Henry will go to public school two days each week and receive special education and speech therapy. I am scared out of my mind to leave him at a brand new place for 6.5 hours, but I have already started praying for God to prepare Henry's tender heart for the change and the potential anxiety. If this is what's best for him, I don't want to hold him back. Additionally, the IEP team decided it would be in Henry's best interest to go to our church preschool two half-days each week, as we had already planned. This way he will have regular contact with his usual peers. The professionals feel strongly that children like Henry should have as much interaction with mainstream children as possible.

Now, if this doesn't sound like enough, we still had to decide if we should continue Henry's private speech therapy. We were also available for weekly services at TEACCH, but we couldn't see where that would fit into our schedule. We have decided, for now, to continue his private therapy and seek TEACCH services that aren't weekly. Keith and I feel strongly that all children, mainstream or otherwise, need time to be kids. Over-scheduling Henry (and, in turn, all 3 of us) is the last thing we want to do. Henry needs time to decompress at home, to feel safe, to kick a ball in the yard, to play with his trains, and the like.

So, these are our plans right now. His IEP will be updated every year and possibly even more often than that, so I anticipate my life is going to stay pretty dynamic. But if there's one thing I've learned as an adult, it's that absolutely nothing ever turns out the way I planned. And that's ok.