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Eastern Massachusetts Fragile X

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Cue the tears…

Caleb Welin, grade 4_Page_1(thumb)

I was going to simply update the file attached to Back to what now? but then Caleb’s teacher of the last two years returned her portion of the Positive Student Profile. It brought tears to my eyes as I read her “tips” on educating and supporting Caleb.

How often do you find a . . . → Read More: Cue the tears…

Back to what now?

Caleb Welin, grade 4_Page_1(thumb)

My facebook feed is lighting up this week with picture after picture of kids heading back to school. First, I have to say whaaaa? Caleb just finished 3rd grade two weeks ago, how are you all back in school?? Labor Day is the end of summer, no one should be back in school before the . . . → Read More: Back to what now?

The Mighty C

image

Every morning, this boy of mine wakes to a world that is too bright, too loud & too fast. Every day we pray that we can provide him enough love, comfort and security to get him through to the end of the day whole and happy.

Every day we give him his medications, to . . . → Read More: The Mighty C

It’s like living in the Twighlight Zone sometimes.

photo

This morning I was preparing Caleb’s breakfast like always. He’s in a phase where he only wants grilled ham & cheese. Easy, I can do that! Then, two days ago, we ran out of ham and circumstances have conspired to leave us ham-less.

Yesterday, I cooked him a grilled cheese. He took a bite, . . . → Read More: It’s like living in the Twighlight Zone sometimes.

Perspective

My new hero, Tommy.

The always beautiful Chelsea.

My dear, dear friend, Mrs. Rogers is a fan of perspective. Every International Conference that we attend, our third having just passed, provides me with boatloads of perspective. If there ever comes a day when I think that I know all there is to know about fragile X as . . . → Read More: Perspective

Yes, and…

Pure Love2

I know I keep talking about that Leadership series (here, here, here, here, here, here and here) but it was life changing and I’m still adapting to my new outlook…so bear with me while I continue processing.

One of the activities we did during the series was the “Yes, and” vs the “No, but” . . . → Read More: Yes, and…

Another goodbye.

Grammy B

Yesterday evening my Grammy Bennett left us. Grammy was an original, I never once met anyone with a Grammy quite like mine. She had a survivor’s tough spirit but her heart was tender. She loved every single one of her children, grandchildren, great-grandchildren and great-great-grandchildren fiercely. Even when we did something unexpectedly (or even . . . → Read More: Another goodbye.

It is IEP season, let’s make them suck less!

Leonard P. Zakim Bunker Hill Bridge, Boston, Massachusetts

“Leonard P. Zakim Bunker Hill Bridge, Boston, Massachusetts“by rolando000 is licensed under CC BY-ND 2.0

This is every parent of a child with special needs’ favorite time of year (and if you buy that, I have a gorgeous bridge for sale in Boston…the Zakim, you’ll love it!) Every year at this time the . . . → Read More: It is IEP season, let’s make them suck less!

Ain’t no mountain high enough.

Hiking

Today is my son’s 10th birthday. For 10 impossibly short years I’ve had the privilege of waking up every morning knowing I am his mommy. It is an honor so profound that I have trouble finding words to describe it.

A few weeks ago, Caleb requested that we take him on a hike. He . . . → Read More: Ain’t no mountain high enough.