Category Archives: speech therapy

We need a plan

Please note, I would never ask a therapist, teacher, ESP or doctor/nurse work during this unprecedented pandemic.  However something is happening to families whose child has special needs and we have to talk about it.  

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We are gearing up for online learning with Bridget. Her SPED teacher sent a few video links and set up up in Google classroom.

I played the video. An immediate shut down happened. We videoed the shut down and behavior that the video of seeing her teacher caused. (I am not going to share it to protect her teacher’s privacy). It looked like this… Continue reading

I lost 10 years

Please note, I would never ask a therapist, teacher, ESP or doctor/nurse work during this unprecedented pandemic.  However something is happening to families whose child has special needs and we have to talk about it.  

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At Bridget’s IEP meeting in the fall I warned the team that I wanted to begin now preparing Bridget to be as independent as possible. Continue reading

More than words

You know when you think something is working and by all appearances it is, then you let someone else test your “thing” and it malfunctions? You have to go back to the drawing board and you are frustrated because you were so sure that your “thing” was working perfectly.

That my friends is life with Bridget.   Continue reading

When hope is all you have

I received a text from Bridget’s teacher the other day. She was asking if something happened at home she should be aware. Bridget had been crying off and on all morning. They had never experienced this behavior before.

My first instinct was to respond welcome to my life. Continue reading

Along comes a milestone

 

We waited a long time for Bridget to speak. It took years of therapy and patience. I remember the first time she said “Abby”, “hooker” and “I love you”. For ages, we were Bridget’s translator to the world around her.  We knew what she was saying, the world around her usually looked at her like she was speaking a foreign language.

Over time, Bridget’s articulation became more pronounced. Suddenly, the girl without words was shouting, “Miss Tisha Look At ME!”.  Continue reading

This is SPECIAL education

In September I was terrified of Bridget entering kindergarten and transitioning from the Spinnaker program to a new self-contained special education classroom. Even though I knew the special education teacher for years, leaving the sanctuary of Spinnaker was heart wrenching.

I knew I was over-reacting and worrying for nothing. However loud the brain is shouting, the heart beat of panic is louder. Six months later I am happy to report that not only are we surviving kindergarten, Bridget is thriving.  Continue reading

You have a diagnosis. Now what?

In February 2015 there were 19 confirmed cases of people who have PACS1 Syndrome. As more children have Exome sequencing, we have grown to 32 (known) families. In a year. Thanks to this blog, I am sometimes the first point of contact for the newly diagnosed. It is a role I cherish yet at times feel sad that I cannot provide the answers they may be looking for.

Welcome to the PACS1 family! Now what? Continue reading

It’s all about language

We had a very successful trip to Bridget’s neurologist. And not just because we survived it without Bridget setting off any alarms.

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She just looks innocent

I have to confess, of all of Bridget’s doctors her neurologist is my favorite. We’ve had her since she was a fellow (no, not a Jenner) and saw her through getting her MD. We’ve seen her choosing her specialty and having her first child.  Continue reading

Autism cannot be cured

I believe in autism. I believe that so many families battle autism like warriors. I believe autism can be masked and I believe that autism can be hidden.

I do not think autism can be cured and question that it should be. Continue reading