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#412: Germany Part 2

December 7, 2022

We explore Heidelberg, getting some z's but not a lot. And we finally meet up with the scientist who knows more about Hao-Fountain than anyone else.

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Tags phenotyping study
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#411: Germany Part 1

November 30, 2022

Tess takes her first voyage across the Atlantic. At long last, we begin our trip to Germany for the phenotyping study.

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Tags phenotyping study, travel
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#410: A Crucial Waypoint

November 23, 2022

Germany, take two. Let's go see Dr. Schaaf.

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Tags phenotyping study
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#409: Evaluation Exasperation

November 16, 2022

Evaluations. They're a huge part of our life with Tess. They aren't really fun.

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Tags pica, hyperphagia, evaluations
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#408: Thirteen

November 9, 2022

We have a birthday girl in the house. This week, Tess turns the big one-three.

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#407: Tess Clams Up

November 2, 2022

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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Tags nonverbal, communication
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#406: Bat-Signal Answered

October 26, 2022

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

October 19, 2022

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

October 12, 2022

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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Tags IEP, communication, augmentative and alternative communication
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#403: Being Seen

October 5, 2022

Gather round. I want to tell you a story about someone who really sees Tess.

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#402: A Food Tess Won't Eat

September 28, 2022

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

September 21, 2022

Calendar invites. Rare parents get a lot of 'em. And we pretty much have to click yes every single time.

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Tags therapy
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#400: Four Hundred

September 14, 2022

We've come a long way together, Tess Army.

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#399: Victory in Maine

September 7, 2022

Victory. Sometimes it's sweeter when you lose a whole bunch and almost give up hope and then finally prevail in the end.

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Tags biorepository
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#398: Take the Red Pill and See How Deep the Rabbit Hole Goes

August 31, 2022

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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Tags Matrix, registry
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#397: Camp Dad

August 24, 2022

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

August 17, 2022

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.

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Tags travel, autism, autism spectrum disorder
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#395: Traveling with Autism - Part 1

August 10, 2022

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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Tags travel, autism, autism spectrum disorder
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#394: Brace Yourself

August 3, 2022

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.

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Tags PT, physical therapy, orthotics
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#393: Chunes

July 27, 2022

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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Tags music, communication
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Start at the beginning.

I've been writing about Tess since February 2014.

If you want to read more about my life with Tess, head over to my personal blog, bobigelow.com, and start with the first post.


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