Clouds, May 2010

Clouds, May 2010

Thursday, January 10, 2013

where is he now?

September 5, 2012:
(an excerpt from my blog post that day)

Our first grader is not the same as other parent's first graders. Instead of expecting him to write his first and last name correctly, we will be proud of him for drawing his 'H'. Instead of expecting him to read a new book, we will be proud of him for visually identifying more and more new names and other words. Instead of expecting him to make progress with complex math assignments, we will be proud of his improved counting skills. Instead of expecting him to paint a masterpiece in art class, I will be proud of him when he completes a craft.   
I will never need an honor roll bumper sticker on my truck for anyone to know just how much I believe in my son.

He is our first grader. And our expectations are that we will have another school year of being proud of him."

Overall September was a good month. This is usually the case, and the teacher's often joke that with the start of every new school year Hayden goes through a honeymoon phase.

Almost as if on cue, October began and the honeymoon concluded. The weekend of October 13th we finally had everything in place to begin a treatment regimen.
( see original post )

In general, Hayden was very hyper-aware of the patch being on his skin & we only had intermittent success. In addition we had other struggles. Near the end of the month, the disruption to his routine as a result of Hurricane Sandy definitely had a lingering effect on him. We were weeks into November by the time Hayden finally, slowly stopped talking about power outages, generators, trees falling, & the like.

By the end of November he started to have more consecutive good days at school again. But it didn't quite last and December was filled with more fluctuating behaviors. We did have a behaviorist consulting with us on a regular basis, but Hayden's compliance was inconsistent.

Just before Winter recess, we had an appointment with a new Developmental Pediatrician. Her recommendation was to increase his dosage 5mg more. This means a larger patch = easier access for Hayden to reach and peel off + a larger area of skin irritation (especially considering it does not go in the same spot twice). We also scheduled a team meeting and this proved to be crucial in terms of putting a plan in place beginning in January: attempting a more consistent continuation of the original prescribed patch (before considering filling the new, stronger script).

Well the school nurse has been applying Hayden's patch daily and contrary to our trial runs during the last couple months of 2012... we are finally seeing concrete signs of progress.

I feel like this is the blog post that has been one year, ten months, and seven days in the making...

Here is some recent feedback from school. The exclamation points, capital letters, underlines, and smiley faces are accurately included in these excerpts:

January 2, 2013:
(Parent-Teacher Journal)

"H had an awesome day! Did awesome reading & remembering his words. Sat great in the lunchroom. Had indoor recess, worked on floor puzzle & cleaned up right away when told! AWESOME! Overall wonderful day!!"

(Home-School Communication Book, note from PT:)

"Hayden used the 2 swings in PT, did a lot of weight bearing thru his shoulders & arms while putting bean bags in. More organized. Better cooperation. He also used the tricycle for longer distances."

January 3, 2013:
(Parent-Teacher Journal)

"Another great day! He had a little trouble in gym, but the length of time being upset has shortened considerably & he is able to regain control. Sent home some work from today. He was so on the ball. Very proud of him! Played Legos with classmates during indoor recess!"

January 4, 2013:
(Parent-Teacher Journal)

"Another AWESOME day! He did great in music & followed directions beautifully all day."

(Home-School Communication Book, note from ST:)

"...what a great week I have had with Hayden. He was very focused & easily tolerated redirection. At the end of speech today he said, 'Thanks, I appreciated it' :)"

January 7, 2013:
(Parent-Teacher Journal)

"H had a good day! A little non-compliant during reading, but did great during gym!"

January 8, 2013:

(Parent-Teacher Journal)
"Another great day! Did great seat work & did his best with the small reading booklet. He was so proud of himself! He had library & did awesome! :)"

January 9, 2013:

(Parent-Teacher Journal)
"Overall a good day! Had some trouble during a task, but took a 5 min silent/ calming break & then was able to get right back to work. We did penguin footprint-art today!"

January 10, 2013:

(Parent-Teacher Journal)
"H had an awesome day! Did great @ music & gym. We painted a brown walrus. He had a great time!"

(Home-School Communication Book, note from OT:)

"Hayden practiced cutting, coloring, making H's! He earned the Tool Man Tool Box! WOO HOO! He was awesome!"

...and for the grand finale, excerpts from the official 2nd quarter Progress Report:

"Hayden continues to progress with Reading Rocks. He is independently answering & completing worksheets more frequently.... We have started working with money & pretending to shop at the store. Hayden really enjoys this.... Hayden continues to do a great job with his daily job, of getting mail & delivering mail.... While we are seeing some difficult behaviors... we are continuing to work through it positively.... Recently he has made great behavioral improvement.... Keep up the great work!"

At 17 months of age our son Hayden was diagnosed with Fragile X. His birth certificate will tell you he is now 7 1/2 years old, but his development is many years younger. Still he is a very social, charismatic, likable, lovable, funny, motivated, smart, and physically healthy child... he is arguably one of the happiest kids a person could meet. He loves to play, to interact with others, and he easily finds his way into the hearts of nearly everyone who has the opportunity to get to know him. Hayden is our son who is able to love life AND LEARN and it shows in everything he does.

Our first grader is certainly not the same as other parent's first graders. And I am surprisingly grateful for this, because otherwise  I fear I might not continue to be in such complete awe of him... and everything he accomplishes.

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