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Eastern Massachusetts Fragile X

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  • Is it Autism or is it Fragile X? Fragile X is the most common known genetic cause of autism! #LIUB #fragileX #autism #awareness

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  • Have you heard of fragile X syndrome? If not, you’re not the only one. Most people would be surprised to learn that it’s the most common identified cause of inherited intellectual disability. Fragile X syndrome is also the most common known cause of autism or autism spectrum disorders.

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

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.

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.

Today is World Autism Awareness Day!

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If you are seeing a lot of people wearing blue or turning blue on social media (and they are not discussing Obamacare) it is most likely due to the fact that today is World Autism Awareness Day!

This morning I was walking up the stairs at Caleb’s school behind a father and son when . . . → Read More: Today is World Autism Awareness Day!

About that trip to DC

Fragile X Advocacy Caleb letter to Katherine Clark

Somehow March is over and I’ve still not shared much about that trip to DC. Part of it is that whole black seed of misery thing and part of it is that I have told the stories so many times it feels like everyone in this state and maybe a few others have heard . . . → Read More: About that trip to DC

Rockslide.

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Two nights ago I had this dream, I was standing at the top of a mountain. It was a barren, granite mountain top like those you often see in Maine. Suddenly the earth shifted under my feet and the rocks slid in a jagged, irregular path down the slope. I was left standing on . . . → Read More: Rockslide.

I am a work in progress.

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I wrote a blog, “Time for a new story?” last November on a topic that has become a bit of an obsession. Language. You will probably not find many parents of children with special needs who aren’t aware that language matters. Just look at the support the “R-word Campaign” has built.

Every time someone . . . → Read More: I am a work in progress.

Glitter

Caleb

At the last leadership series session, one of the presenters began the day by walking us through a bit of meditation to get us in the right frame of mind for a day of hard work (through play, it was awesome.) I’m going to shorten this by a great deal but you’ll get the . . . → Read More: Glitter

My child is not a puppet.

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I’ve been avoiding this topic for yeeeeaaaars because I’m fairly sure I’m about to upset more than a few of my fragile X friends. I hate conflict. I like my friends. So this post is really, really hard to write. My palms are sweaty, in fact, but I want to share my thoughts on . . . → Read More: My child is not a puppet.

Do you hear voices?

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I have a few that I hear, don’t start Googling prescriptions for me just yet…hear me out.

There are voices in my head. Mean voices, voices that undermine my confidence, voices that whisper almost constantly but turn into shouts if I do something that challenges them. I’ve always believed that everyone has these voices. . . . → Read More: Do you hear voices?