Evaluations. They're a huge part of our life with Tess. They aren't really fun.
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#408: Thirteen
We have a birthday girl in the house. This week, Tess turns the big one-three.
Read More#407: Tess Clams Up
Tess is such a talker. Not with words exactly, but a complex system of sounds and gestures. And one thing that can sometimes cause us a bit of concern is this: when she clams up entirely.
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#406: Bat-Signal Answered
A call for help. A bat-signal in the night sky of life with a rare disease. One man sees the signal. And he answers.
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#405: Tess and a Friend Conspire
What is Tess's favorite item from the lavatory? Raise your hand if you think you know the answer.
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#404: We Can Handle an IEP
It's time once again for the great powwow among experts to work on Tess's education. I'm talking, of course, about her IEP.
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#403: Being Seen
Gather round. I want to tell you a story about someone who really sees Tess.
Read More#402: A Food Tess Won't Eat
Apple picking. It's not just for people who need to get out of the house with their toddlers.
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#401: Calendar Invites
Calendar invites. Rare parents get a lot of 'em. And we pretty much have to click yes every single time.
Read More#400: Four Hundred
We've come a long way together, Tess Army.
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#399: Victory in Maine
Victory. Sometimes it's sweeter when you lose a whole bunch and almost give up hope and then finally prevail in the end.
Read More#398: Take the Red Pill and See How Deep the Rabbit Hole Goes
Foundations often start small, with a few parents around a kitchen table. But they grow. And ours is growing now, thanks to a special tool. Do you want to know what the Matrix is?
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#397: Camp Dad
There are no camps. No activities. No more summer school. What can we do in the last weeks of August, before school starts?
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#396: Traveling with Autism - Part 2
Our family just took our first voyage in over three years, to Montreal and Quebec. We learned a ton. And I'm back this week with some more tips about traveling with autism, so you know what worked for us on the road with Tess.
Read More#395: Traveling with Autism - Part 1
Our family just took our first big trip in over three years, to Montreal and Quebec. We learned a lot. And I'm gonna give you some tips about traveling with autism, so you know what worked for us with our Tess.
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#394: Brace Yourself
You may know that Tess didn't walk until she was five. She wore orthotics, or braces, for years. And now, at age 12, she's back in braces.
Read More#393: Chunes
We play a lot of music in our house. In the kitchen, in the car, wherever. Tess is making her opinions known about certain tunes.
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#392: Where the Checks Go
Happy to tell you this week about the next phase of our search for a cure or treatment for Hao-Fountain Syndrome.
Read More#391: Marley
This week, we say goodbye to a dear member of our family.
Read More#390: Positive
Our family is totally packed, ready to jet off to Germany for the phenotyping study and a massive family conference. And at the eleventh hour, there's a slight curveball.
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