For anyone who has been following along on the Facebook pages this won’t be any new information. For everyone else, I will try to give a brief catch up/back story.
Several months ago HD and I sat down and made a hard decision. We moved BigM to a different doctor. This was no simple task. In order to get a different doctor we had to change what type of insurance we were on. We got established with this new doctor who had more experience with kids and was willing to learn and use new ideas not in the textbooks. After talking to the doctor he told us that for the answers we wanted we would be better off going to the specialist because the school districts and such were more likely to listen to what this specialist said. We agreed to do this and finished addressing what could be addressed by the pediatrician.
We got the referral packet filled out for the specialist and forwarded onto his office. At our first phone call with the office we were told it would be 8-10 weeks out before we could get in to the specialist. This was accounting for getting records from all other providers and then the wait time for an out of area family to be able to get on the schedule. I was told this back in May. It is now August and we are finally meeting the specialist. It took a little longer than 8 weeks to get everything worked out.
I’m not quite sure what happened that it took so long. There were some delays in getting records initially and then more notes were needed. All of this took time. Then it took longer to sort through all of the records and notes and decide whether or not BigM could be helped by this specialist or not. I got the phone call about 10 days ago that everything was done and we were on the schedule. There may have been tears of joy.
Now we have the fun trip that is an 8 hour drive away, for appointments that will take the entire week, all so that we can cross our fingers we find out what is wrong. At least give us a new direction to go in! BigM will be seeing a Speech/Language Pathologist, a Psychologist and the Developmental Pediatrician for evaluations. At the end of the week we will meet with the specialist to get the results and a diagnosis, if one is possible.
The decision to get this second opinion came after a year of having every single professional that worked with BigM told us they did not believe he is autistic. Even those who worked with him from the start did not believe it. Even those who have worked with him for several months don’t believe it. The ER doctor that saw BigM last week looked at me like I had grown an extra head when I told him that BigM was diagnosed autistic.
Losing the diagnosis of autism will change a lot. We may end up losing the behavior services from insurance coverage. Either way we are still pursuing the service dog. Despite what the label is, BigM needs the help and security that the service dog can provide. While the fundraising process has been painfully slow we know that it’ll be done when the time is right.