I love our developmental pediatrician, Dr. DP. He is open, honest, and never leaves me astray, which was what made today's appointment that much more difficult for this mom to handle.
Jack's anxiety has steadily increased over the last year. At his last follow-up appointment with Dr. DP in January, we agreed that Jack was struggling with anxiety, but we were going to give sensory integration our all for the next six months and see if it made a difference.
It didn't. We got Jack a swing set. We got him a crash pad. We've been trying to give him input as often as we can. I also communicated to Jack's private therapy team that we needed to put an increased focus on sensory integration. I gave it my all; it wasn't enough.
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After the therapist woes we had experienced lately, I called Dr. DP's office for advice. I started emailing the social worker in his office about the situation when the issue of Jack's anxiety came up. I mentioned it more as an illustration that I felt like Jack's current program wasn't quite working. I was surprised when she suggested that we come in to speak to Dr. DP about it very soon. That was Thursday when we spoke of this. Today was Monday. They got Jack in that fast.
As I recounted to Dr. DP the struggles Jack had faced as of late, I felt a little dejected. For the past two years, I lived with the happy knowledge that I was doing everything I could for my little boy and seeing some results, albeit small ones. This was different. This was something that I wasn't making a dent in and that was consuming us all. My own anxiety had been increasing lately as a result of Jack's. The never knowing when the next meltdown, outburst, bad report from school or therapy, or other issue would hit was making me nervous. I've heard it said that autism moms can suffer from PTSD-like symptoms, and I definitely was feeling it lately.
Dr. DP was sympathetic and understanding. I wanted him to know that I didn't believe Jack's aggression was true "aggression"; I believed that he was going into fight-or-flight mode in a panicked moment of needing an escape. I felt like I needed to reiterate - even to the expert who seems to always get it right - that this was not my boy's fault. It's just his neurology and a balancing act of helping him successfully navigate the world. Unfortunately, I felt like my power to do so had diminished slightly as of late.
When Dr. DP heard this, he spoke words that felt so true but that cut me to my core at the same time - that this wasn't unexpected. That the challenges would evolve over time and that as Jack aged, he might actually need more assistance.
Dr. DP recommended that Jack not only start anxiety medication, but that he also add ABA to his regimen. He felt like we had crossed a threshold in which Jack simply needed more help than what we were currently providing through Floortime. I've poured my heart and soul into Floortime, so switching gears isn't an easy thing. ABA that isn't covered by our insurance. ABA that is considered "experimental" by many insurers here in Georgia.
Not exactly what I hoped to hear.
It's not that I have anything against medication, but I also know that it's a slippery slope on which we now tread. It likely means that Jack will continue to need medication for a very long time. When Jack was diagnosed, Brian and I had agreed to avoid medication as long as we could. Now that we were at that point, it felt like I was giving up. Not that people who turn to medication are "giving up", but I had tried for so long to manage my son's anxiety on my own and through therapy. I had hoped that therapy would give him the tools to self-manage. I had worked my butt off trying to help him. I had failed at doing so. I wasn't able to make this better. That was a hard reality to admit to myself.
Then, to know that the therapy my child needs at this time is, in all likelihood, something I cannot provide? It's not easy for me to admit defeat, but in that moment I felt defeated.
I also knew, in my heart of hearts, that Dr. DP was right. Jack simply needs more than I can do right now. He needs more help than I can provide. As with all things, I simply have to hold my head high, swallow my pride, and move forward to get my boy what he needs. I've done it before. I'll continue to do so.
We left with a follow-up in a couple of months, a promise to keep in touch via phone calls as Jack starts medication, and a prescription for the meds and an order for an EKG since the new medication can affect cardiac function. I'm sure that the EKG will be an interesting experience, to say the least.
Jack and I have taken winding paths on this journey, and this is just another one. It's unfamiliar to me and scares me, but that's okay. The unknown isn't always bad; it's simply unexpected. We'll just have to evolve. I'll just have to evolve.
It'll take time. I'll have to absorb what this new path means, but I will do so.
I will do anything for him.