Set Backs

I haven’t had as much posted on here for Autism as I wanted to going into this blog. To be honest these past two months have been rough. Increased behaviors, slow doctors offices, a large chunk of fundraising for the service dog vanished in thin air, and school ended and summer school began all in this last two month period.

There have been more regular updates HERE on our Facebook page. Our search for this new diagnosis was further solidified when I talked to the summer school teacher and she flat out asked me if my son had a diagnosis and what it was. From the start not a single therapist has believed that BigM has the correct diagnosis.  With this knowledge we found a new specialist to see.

Playing in the snow this last winter.
Playing in the snow this last winter.

In mid-April all the initial paperwork was submitted. We were told that once all the records were collected it would be a 4-6 week wait for our appointment because we were out of town. That 4-6 week wait did not start until all the records were collected. It was only supposed to take 30 days to collect the records but it took 6 weeks. One reason it took so long is because the specialist wanted some extra notes from the current therapists. Now that all of that has finally been gathered and organized we are waiting to hear if the specialist is going to see us and to what extent this appointment will be.

One reason we chose him was because we were told that this appointment would be a week long series with a variety of specialists before seeing the pediatric developmental specialist to hear the results and receive a diagnosis.  We should be only 2-3 weeks away from attending our appointment, instead we have yet to even be able to receive an appointment date and hear who we are going to meet with. Let me just throw one more little fact out there, I am currently 30.5 weeks pregnant and my doctors expect me to deliver right around 36 or 37 weeks. I have to be at these appointments because I am the one that is around BigM all day. I am the one that can say whether or not something is normal or within his capabilities. As much as HD helps out and is involved it’s just impossible for him to know everything.

Watching hail for the first time that he remembers.
Watching hail for the first time that he remembers.

BigM is now on three different nutritional supplements at night along with his prescription medicine, all for sleep and behaviors. Despite all of this we started seeing an increase in behaviors. It was small with his normal school year coming to an end but this last week have severely increased with the start of summer school. The poor kid has a 7 hour day between school and a bus ride. No joke, a 3 hours bus ride (round trip) on top of a 4 hour school day. He is in a preschool classroom but they decided for summer school to double the time that the preschoolers are in the classroom. What sort of sense does this make?!

Needless to say there has been quite a bit of frustration lately concerning Autism and BigM.

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5 Comments Add yours

  1. RachellieBellie says:

    ::sending love and strength:: could the increased maladaptive behaviors be due to an extinction burst?

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    1. homemademomy says:

      I wouldn’t say an extinction burst necessarily. BigM reacted this way when he first started in the special needs program at the start of the school year last year. It took a good 2-3 months for him to adjust to going to school in the mornings. During those 2-3 months we had severely increased behavior at home to the point that I almost pulled him out of the program because of it. He also appears to be having a downswing and reacting negatively to more right now.

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      1. RachellieBellie says:

        ::sigh:: it’s so hard! Sending love and a nap your way!

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  2. followechoes says:

    I understand how you feel. Its endless doctor, therapist, school and other appointments. My youngest now goes in a specialist taxi to school as the drive was getting to much. Her school is quite far away. Her behaviour is getting worse as she gets older. Its an on going day to day challenge. Just to let you know you are not alone. Sending hugs your way 😀

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  3. It’s so hard. We go through times of set backs and regressions. Sometimes, we just don’t know what to do. I know how you feel and hopefully you get some relief soon.

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