Clouds, May 2010

Clouds, May 2010

Monday, November 18, 2013

treatment plan

So... my recent blog updates this Fall have included fascinating topics such as transportation issues, Halloween happenings, & iPad catastrophes.

Well, on Friday we had another follow up with the Developmental Pediatrician regarding H's medication. His anxiety is clearly heightened more than ever, since this school year began. I suspect this is mostly a result of too many changes & inconsistencies... as far as school faculty, & transportation, & so forth.

Just a side note from the medication update for a minute, though-- because although it's an important part of his treatment plan as a whole, so is working with a specialist to help determine the root of his challenging behaviors in the first place.

So yes, part of H's IEP does include behavior services. However the last two Behaviorists who were assigned to his case proved to be unreliable (at best) with scheduling. The person who was supposed to work with us over the summer either didn't show up when she was supposed to, or believe it or not actually did show up at least once when she was not scheduled to. Then there was the person who was supposed to fulfill our remaining hours this Fall, to make up for the lack of services from summer. We had a couple of home visits but then agreed to do phone consults. The last two times we scheduled phone sessions, the Behaviorist just never called at the agreed time. I would have & could have called her myself, & just initiated the conversation since she didn't... but you know what I was busy working, & being a mom, & who knows what else... even though I would have been available to speak had she remembered to contact me.

Point being if it was my job to call a client at a certain time, that would be a different story. I would certainly not be waiting for the client to call me. It is absurd that the Behaviorist never even brought up the fact that we missed our phone consult... twice! Both times I was the one who reached out to her & said, "Weren't we supposed to have an appointment?" The first time it happened, she answered yes & that she herself was busy multitasking & she was sorry we missed each other.


The second time it happened was last week. She has not yet replied to my email, but it's possible this has something to do with the fact that I cc'd our case manager, as well as the district education consultant, & also her supervisor. But really, can you blame me.

In the interim we are also trying to figure out the appropriate medication(s) to help manage some of H's symptoms of fx.

The medicine he has during the day at school has recently not been as effective as it was in the past. We need to determine if this is because the dosage needs to be increased, or if this is because his anxiety is sort of overriding everything else.

This afternoon I picked up his new Rx... I will hopefully have an update soon as far as whether or not it helps. It is not another patch-- it is a tablet, & I was given permission to crush it up & add it to his breakfast. It is supposed to be almost tasteless & when cooked with his eggs, it will hopefully be undetectable. 

In other news, I too have been working on my own sort of treatment plan if you will. Not meds (although I could use some), but rather forcing myself to be more involved. I had been feeling somewhat disconnected lately... with work, with friends, within the fragile community... just sort of all-around, feeling as if I am going through the motions of my life's routine. But nothing more.

Then, luckily, a fellow fx parent encouraged my involvement with the LINKS Network. LINKS stands for Linking Individuals Nationally in Knowledge & Support.
The LINKS Support Network is a national volunteer program of the National Fragile X Foundation, & is primarily run by parent volunteers. A few weeks ago I had the very distinguished privilege of participating in a recent NFXF LINKS Leadership Summit.

My only reluctance was over my travel anxiety (well that & the fact that I have to very carefully ration my days off from work every year, especially because I am not on a 40 hour/ per week schedule).

But the experience was truly amazing & I am so honored to be an official LINKS Co-Leader for the Fragile X Association of New Jersey. It is amazing to be able to help the National Fragile X Foundation in their mission, & give back for all of the ways that they help everyone else. 

And as I continue to help Hayden get back on track, & try to remain hopeful that the transportation issue is only temporary, & of course pray that Hayden's third & final replacement iPad is not possessed... I simultaneously hope that my increased community involvement continues to help me, too.


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