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Eastern Massachusetts Fragile X

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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.

The same story, told twice.

These bridges wont burn themselves

Two weeks ago, a notice was sent home in Caleb’s backpack. The notice went out to all of the children at his school and informed them of a series of field trips and activities that would be taking place during vacation week. Parents were asked to return the permission slip and a check to . . . → Read More: The same story, told twice.

Have you met my child? He’s a human being.

Fenway Fun

Attending the Family Leadership Series has been life changing, just as my friend Patricia had said. I have, for most of Caleb’s life, defined myself as a special needs parent. I have framed all of my goals around his special needs and his special education rights. My child’s needs aren’t all special, nor are . . . → Read More: Have you met my child? He’s a human being.

Captain Sneakypants.

Captain Sneakypants

Every morning before school Eric and Caleb do their morning shower routine. Caleb likes to wait until the last possible second before he will actually get into the shower. He will lay on the floor or pretend to use the toilet usually, and….the speed at which he gets undressed…I have no idea how Eric . . . → Read More: Captain Sneakypants.