Logistics

My focus lately has been on logistics. There are so many things to learn, so many decisions to make. If I look too long at the whole picture, I feel completely overwhelmed and hopeless. So we’ve tried to take things one step at a time, one decision at a time, one day at a time, sometimes one hour at a time. It’s been a roller coaster of ups and downs, back and forth decisions, and I feel like we’ve changed our minds at least a dozen times. I’m beginning to get whip lash.

One of the biggest decisions has been choosing a developmental preschool for J. The doctor wants him in a preschool where he will be around at least a few typically developing children who can model appropriate behavior, but also a school that focuses on children with delays and disabilities. Many of these facilities have therapists on site who provide speech or OT services during the school day. And supposedly TEIS is supposed to cover 10 hours of this “special instruction” per week (they told me they don’t…because they suck… but I know they will if you push hard enough). So I set up some appointments to visit and tour these programs. The first place I visited came highly recommended. We had taken CB to their therapy clinic a few years ago for feeding therapy, so I was already familiar with it. Once I saw the preschool, however, I just didn’t feel like it was the right place for J. It seemed like a perfectly fine place, but I didn’t see how it would really help to encourage and develop his social interaction skills. I felt like it would be a great place for kids with other disabilities, but I didn’t feel like they did autism well. It was the first time I had looked at a school like this, though, and really, what do I know? So I tried to keep an open mind, but when I left the preschool, I cried all the way home. It’s not where I wanted to send him, but I wasn’t completely sure why. The other 2 schools I talked with gave me the same impression – they do great with other disabilities, but they don’t do autism well. Then I went to look at another treatment center. I’ll call this center The Gold Bar Center – you’ll see why in a few minutes. Within 10 minutes of being in that center, I knew there was no comparison. This place knew how to deal with autism. It makes sense, because it’s a facility specifically for children with Autism Spectrum Disorders. Everything they do is with the intention of improving these children’s communication and social skills. Even the placement of their toys and the arrangement of the room is set up to facilitate communication development. All of the therapy disciplines are available on-site, including behavior therapy (which is a HUGE component of autism treatment, and none of the other facilities even employ a behavior therapist). They provide home visits as often as needed, parent training and support, even counseling services if I have a breakdown and need to talk to someone. When I talked with the director, I felt like it was the first time I was talking to someone who really understood what I was feeling. She just got it. She has 2 children of her own on the spectrum, and she told me many times, “I know what you’re going through. I’ve been in that exact position. Twice.” The staff at The Gold Bar Center understand autism, because it’s all they do. I felt very strongly that they would equip and empower Chris and me to help J. They would teach US how to help him, how to train him, and how to parent him. And that’s exactly what we need. It really is an amazing center, and after talking to many other people about it, we’ve realized that it probably is the best of the best that Nashville has to offer for autism treatment. The downside to The Gold Bar Center, however, is that these services come at a very high price. When I told one friend how much it cost, she said “Good grief! Do they hand out shiny bars of gold every time you walk in the door??” It’s not their fault…in order to provide that level of intervention and quality of care, they have to charge that much. This type of therapy is just very expensive. The problem is that TEIS does not contract with The Gold Bar Center, and The Gold Bar Center has good reason for not contracting with TEIS (mainly because TEIS sucks). So TEIS is currently telling us that they will not pay anything for us to send J there (although we’re not finished fighting them on this). Our insurance will help with some of it, but we’re still trying to figure out how much. But even with what we expect to get from insurance reimbursement, we would have to sink every penny we have in to sending J there for a year (you have to sign a year-long contract). We would do it without a moment’s hesitation if we knew that’s what he needed, but given the doctor’s uncertainty about his diagnosis, it’s very difficult to make that huge of a commitment. I mean, we want to do the very best we can for J. We want to give him every chance we can possibly give him to improve his skills and lead a healthy, functional, relationally-rich life, and acting quickly and aggressively right now is the very best chance we can give him. Wouldn’t you spend every last dollar that you have to give this chance to your child? I mean really, wouldn’t you?? But at the same time, what if we enroll him in this program, then 3 months from now the doctor says that he’s improving so much that he doesn’t feel like an autism diagnosis is warranted, and then he wouldn’t need that level of intervention? And we would have already committed to an entire year and every last penny of our savings. But what if we wait to see how he does, and he doesn’t improve as much as we hope he does, and we end up missing this window when his brain is at its most trainable state? We never, ever, ever want to look back 2 years from now and say “I wish we had done more for him. I wish we hadn’t cared about the money and we had done more.” I don’t think I could live with that regret, I really don’t.

So now we’re confused. We’re considering another option, which our doctor has talked to us about and fully supports. J is beginning speech therapy with a wonderful speech therapist who specializes in autism. She’s in private practice and she’s out of network, which means TEIS pays nothing, and our insurance covers 60%. This makes her much more expensive than going to a general speech therapist at Vanderbilt (which would be free, actually), but it’s worth the extra money. She will be coming to our house twice a week (maybe more, but we’re starting with twice a week). And I’m in the process of talking with a behavior therapy center about setting up a behavior therapy program for him. The world of behavior therapy is very new to me, and I have to say, it’s really confusing. I’ve asked a lot of questions – both of the therapists and of friends who have worked in this field - so I feel like I’ve got a pretty good understanding of it now. We would hire a therapist to come to our house for a minimum of 8 hours/week, and maybe go to his Mother’s Day Out program with him for a couple hours to help him with social interaction skills. Do you watch the show Parenthood? If so, you’ll understand what I mean when I say we’ll have our own personal Gabby (better not invite my single, younger brother over for a visit!). Including speech therapy, this would give him at least 10 hours of professional therapy each week, plus the time I will spend with him throughout the day. That’s still very aggressive intervention, so we definitely wouldn’t be sitting around, watching and waiting to see how he does over the next 2 months before his re-evaluation. That’s more intervention than most children with autism get at this age (because TEIS won’t pay for it, because they suck…). It’s not quite as intensive as The Gold Bar Center, but we don’t have to sign a contract, so we can change his therapy plans at any time. If he doesn’t improve as quickly as we hope, we can pull him out and enroll him at the Gold Bar Center right away. But our hope is that with this intervention, the doctor will tell us in April that he is significantly improving and heading away from a diagnosis. That’s our prayer every single day.

We haven’t decided for sure yet. We’re still investigating insurance coverage, TEIS benefits, and negotiating on a contract with The Gold Bar Center. It’s a lot to decide. We just want to make the best decision we can make for J, but it’s so hard to know what that is given the uncertainty of his diagnostic profile. Chris and I have decided to make this decision based on what we really feel is best for J, not on the cost. We have to just trust that God will open the door where He wants us to be, then somehow He’ll provide the money. I have no idea how, but I have to trust that He will. And in the meantime, we’re praying and asking other people to pray for clarity and wisdom. I want the doors to open where He wants us, and to close where He doesn’t want us. I want it to be clear. I want to know that we’re making the right decision. Unfortunately, it might not work that way. We might just have to make our best educated guess. But we’re going to keep praying for wisdom. And most of all, I have to keep reminding myself that no matter how much I love J, God loves him even more than I do. No matter how much I want the best for him, God wants it even more than I do. He is my son, but even more than that, he is God’s child – his beautiful and perfect creation. He does have a plan for J, and that plan is also beautiful and perfect. It might not be the plan I would choose for J, but even still, it is the perfect plan for J. Honestly, I have to remind myself of this over and over and over, and sometimes I need friends to remind me of it even more often than that. Because I keep forgetting. I want to have everything under my control, and I want to know that everything will work out the way I want it to. But I can’t know that. I just can’t. And somehow I have to make myself accept that. All I can do is keep trusting that God’s plan for J is perfect, that God loves J more than I do, and that He will take care of my baby in His perfect, sovereign way. I have to admit, my faith is not strong enough to believe that all the time. I wish that it was, and people try to make me feel better by telling me how strong my faith is. But it’s not. So for now, like the father of the dying child in Mark, I just keep praying “Lord, I believe. Help me overcome my unbelief!”