Life isn’t fair. Any parent, special needs or not, can attest to this fact each and every time an injustice is done to their child; sometimes though life is even less fair than others. It is in these moments that I am left asking myself a lot of why and how questions. The 2 big questions at the moment seem to be why do we have so much difficulty finding and accessing the resources we need, and how are we ever going to help our baby succeed in the world when it feels like the world is against us?
You might recall me talking about dumpster diving for resources as well as do-it-yourself home therapies in the past. In the spring, we hit the Macy’s of dumpsters and landed a spot in a 10 week occupational therapy play clinic, a 10 week spot in the college sponsored peer mentor program, and we had a referral for 16 weeks of speech therapy. Al l good things come to an end though and all of our programs are now over.
I kind of have a plan for occupational therapy and the social interactions elements, but speech is another story. I don’t know that I have anything good to say about this situation. We have insurance in a state that mandates autism therapy coverage, but we also have insurance that only allows us to attend one facility. We were happily receiving therapy at that facility until our speech therapist left. When she left the wait was going to be indefinite as they didn’t have any openings with the existing therapist and were unsure how long it would take to hire a new therapist. We were able to obtain a waiver to receive 16 weeks of therapy outside of the system. When that waiver expired we were to contact the original facility to see about getting rescheduled there. I’m not sure what happened in the 16 weeks that we and several others families were out-of-network but if I had to guess I’d say that there was pressure on the speech supervisor to get us all back into the system because they were losing money by sending us elsewhere. The supervisor contacted us and told us that insurance wanted a new evaluation because Caden had “too many” diagnoses. This didn’t make a lot of sense to us so we contacted our patient advocate who after some investigation let us know that insurance didn’t make such a request. Unfortunately we didn’t find this out until after I had taken Caden for the re-evaluation. Lying is problematic but we could have overlooked this if the evaluation would have been a positive experience…unfortunately it was anything but positive.
The evaluation began with Janet coming into the waiting room, looking at Elf, and stating that he only had a place in speech therapy if he could talk. Interestingly Federal and State Law would disagree with her but other than snide comments she didn’t try to bar him from the session. She immediately told me that she didn’t think Caden had autism—not sure how she had made this assessment she had never met Caden before and the prior therapist hadn’t questioned the diagnosis. The assessment was ridiculous and didn’t compare to any of the dozens he has had in the past, she was condescending to him, and at one point physically grabbed his arm and forced him to sit back down. She refused to allow him to sit on the floor with Elf and frequently told me he just needed to slow down and use a regular voice. If she had ever read anything about autism or would have listened to me, she would have none that the fast pace and high pitch was due to anxiety and autism and nothing that he had control over. He was restless but he sat for almost an hour doing her flashcards to which she proceeded to inform me that we should consider medication because he couldn’t focus. He seemed pretty focused for a 5 year old who had just spent the entire day in school; interestingly his pediatrician and teachers all dismissed any attention concerns. She reiterated that she didn’t think he had autism and questioned if he should be re-evaluated again. He’s already been tested by 2 completely separate teams at different facilities and one of his other therapists, the school district, or doctors question the diagnosis. She concluded the session by telling me that she would only work on articulation and that the “other stuff” wasn’t her concern. The pediatrician and I read the final report together and in it she indicated that he didn’t have autism, any visible sensory problems, needed to learn more age appropriate behaviors than the [therapist recommended] chewy, that he wouldn’t be delayed if his parents worked with him more, and that he was simply a “highly manipulative child whose parents had pathologized his behaviors.” In case you are wondering pathologized isn’t a word. The pediatrician filed a complaint with the supervisor’s supervisor as did we. We also filed a complaint with our insurance company.
At the end of the investigation insurance told us that they won’t approve us to go out –of-network but that we can see someone other than Janet. The hospital, on the other hand, told us they were sorry that we didn’t have a pleasant experience but that while we certainly welcome to see another therapist, but we needed to know that all of their cases are team managed and Janet would be involved. The only therapist who has openings at the hospital clinic isn’t seeing patients alone yet which means that Janet would be directly involved in Caden’s care. We’ve always said we wouldn’t let anyone who didn’t believe in Caden and have his best interests in mind be involved with his care. BUT we don’t have insurance coverage to take him anywhere else. So what do we do?
We looked into private speech therapy but $40/hour twice a week isn’t in the budget. I wish it was or I wish we had the $1000/month premium for state disability insurance. We don’t. We have the speech apps for his Ipad and we have my research but let’s be completely honest here. We are paying a lot of money for insurance that we can’t use but I don’t know how to put my baby in the care of a therapist who was physically rough with him and who I don’t trust. At the same time I’m not trained to be providing his services and there’s a lot on the line when it comes to speech. His future is literally on the line and I feel totally helpless. Actually I feel like I have failed him. He works so hard to make progress but how successful can he be in a system like this? He has so much potential and we aren’t doing everything we can to help him live up to that potential. I’m not a bad mommy but at the moment I sure feel like one. Ironically all I want is for him to have the opportunity for a successful future but the system/world/life seems to think that I’m asking for too much. And that leaves me with a lot of how and why questions for which I simply don’t have any answers.