I had to fill out an extensive application and include ALL of Megan's school and medical records. I ended up including all of her school files and just her NC medical files since I already had them on hand. I provided them with permission to obtain her TX records if they needed them. Her application was about 4 inches thick so Will dropped it off at their building.
We were informed that it would take 4-6 weeks for them to review her application and determine if she was a candidate for an appointment and then it would take 6 months for her to be seen. 8 days after delivering the file we received a letter in the mail informing us that Megan had been scheduled for an appointment, which was 3 weeks away.
Thursday was the day of her appointment. She hadn't slept in days and got the least amount of sleep on Wednesday night so I wasn't looking forward to how it would go at the office. I wasn't sure what would happen at the appointment, the letter said it would be a 2-hour appointment at least and that no siblings were allowed to attend.
After being checked in by the nurse, and answering a lot of questions they already had the answer to, we were put in a room to wait for about 15 minutes. When the doctor was ready we were moved to the evaluation room. It was about 8x8 in size and had an exam table, a bookshelf full of toys, a kids table and chair and a couple of other chairs/cabinets. Megan checked out the room and the toys and then started pulling everything off of the shelves. I was working really hard to try to contain her and chat with the doctor. Another thing that happens when Megan is tired is she is in non-stop movement mode.
The evaluation ended up being me answering a ton of questions about Megan's abilities and behaviors and the doctor observing Megan playing while we were talking. After a good long time she had the information she needed and she examined Megan, much like a doctor's visit.
I have had to answer a lot of questions about Megan's abilities over the years. It happens with every new doctor, therapist, evaluation, etc. There are people who are good about these discussions and people who really should get a different job (those people always leave me in a puddle of tears). This was by far the best discussion I have had. Because it was an extensive evaluation there were questions or wording being used that made me think about things I hadn't before. Some of it was difficult to admit to myself but it was a good picture of things. Will and I view Megan for what she can do and how far she has come and how much she is learning on a daily basis; and I am constantly being confronted with what she can't do in these types of appointments. I was okay when the appointment was over, but did struggle with some of it later in the day.
Okay...so for the diagnosis and path forward.
Megan has an appointment with a Geneticist in September. The doctor said that the shape of Megan's ears was slightly off and that it could be indicative of something. She had the entry level genetic testing done during the hospital stay in January and they were all normal; if that hadn't already been done it would have been the first step instead of the appointment.
Megan now has a secondary diagnosis of Autism. The doctor said she exhibits several autistic type behaviors: no extended eye contact, not playing with toys appropriately/as intended, putting things in and taking them out, not being excited/interested in showing us new cool things, not sitting still for long/constantly changing toys or tasks. Most of these behaviors went away or improved significantly with her diet change and subsequent sleep and returned this week when she stopped sleeping again.
Something I have been saying and saying and saying in her school meetings is that the issues Megan is having are behavior related and not ability related. The school hasn't been getting it and things just keep progressing on a path that I haven't felt was right for Megan. I did a ton of research and felt like the right thing for Megan was ABA therapy which is completely behavior based. When I talked to my insurance company about it they said that it was covered but only for certain diagnosis codes. ABA therapy is an Autism treatment so I knew that was going to be the code that would be approved and since we have never felt like Megan had Autism I wrote off that option of treatment for her and started trying to figure something else out for her for next year.
Well, now that she has a diagnosis she can get the therapy. I was completely unprepared for a new diagnosis, especially Autism. I was expecting help getting Megan into the special needs school, which she isn't ready for either but was a better option.
I have no way of knowing if the doctor would have seen enough to make the diagnosis if Megan had been sleeping and had things more under control. Maybe there would still have been enough, maybe not. She did say that if I was concerned about the diagnosis she could send her to the psychologist for a complete evaluation specifically for Autism but that she was comfortable making the call with the information that she had. She did say that if in a couple/few years we no long felt that the diagnosis fit we could have her reevaluated and it was possible that things would be different at that time.
No comments:
Post a Comment