A couple of weeks ago I had a pretty stressful day. We FINALLY received the Bayleys Test report and I was so upset by it. A few ailments weren’t recorded and Little Red was basically deemed “average” for her corrected age group. Why is this such a bad thing? Well, it isn’t, it’s a good thing. However I felt the report didn’t accurately reflect what is actually going on with her.
THE BAYLEY’S TEST REPORT
Even though speech therapy was recommended during the session, there was no mention of it. In fact, the only recommendations are for us, as parents, to read Baby Bear books and take her to a playgroup for language development. Yeah. Okay. I’ll get right on that. (I already do both and have done for a long time). There wasn’t really a mention of continued early intervention like physiotherapy, orthotics or anything like that.
Now, we need the report in order to apply to apply for the NDIS (National Disability Insurance Scheme. In theory this should help financially cover some medical costs we incur for her care; for example, her orthotics). Hubby and I decided to contact our pediatrician, Dr L, regarding our belief that it doesn’t detail the severity of what’s going on, and could he write a support letter of some sort. Along with the report concerns, we also mentioned how the spinal specialist may not currently be performing surgery (as per what his receptionist told us) and was there a Plan B?
In short, there isn’t one! Which is kind of reassuring to us.
When I contacted Dr L’s office the receptionist said in passing how the spinal specialist is the best. Obviously our message was passed on to the doctor for his professional opinion. A phone call later that day was basically confirmation to stick with the spinal specialist – something we are totally fine with. It was more to just check for peace of mind, after all, we don’t know why he hasn’t been doing surgery and at the time of the phone call it didn’t seem appropriate to ask for more information. I will be inquiring about it though during our appointment next week.
Nothing was really relayed about the Bayley’s Report, but on Friday we received a letter to our GP that we had been CC’d in. It was brilliant and we are so thankful to our pediatrician for it. It basically details Little Red’s medical history, what her issues are NOW, and investigative plans that are underway. (As I previously mentioned, a geneticist is becoming involved to try and determine if there is an underlying syndrome). We immediately forwarded it to our case worker so it could be included in our application.
ONE DAY AIN’T BAD
The reality is, one bad day isn’t too bad in the grand scheme of things. I didn’t spiral, although I was on the verge, I just took a deep breath and decided to sleep on it before acting.
Getting NDIS approval is something we wish we didn’t need and truth be told, we’re not really doing it for us. The issue isn’t about money we could receive, despite the fact it will be incredibly helpful. If all goes to plan, and as the scheme has been explained to us, it will help Little Red throughout her life. When she is an adult and able to take over managing and explaining what she might need on an annual basis, then she won’t be disadvantaged by any medical costs. That’s the overall purpose of the NDIS.
We think we’ll have to make changes to our bathroom in terms of hand rails, and we’ve already made some adjustments of this nature near door steps and in the garden. We’re not entirely sure what we may need to do. I’m so focused on the spinal stuff that my energy and brain power is fully there. The future is just full of so many unknowns at the moment, and I’m honestly okay with that. I think. Today I am anyway.