PACS1 Day!

Today is PACS1 Awareness Day

What is PACS1? The Scientific definition is: is a rare neuro-genetic disorder caused by a mutation (c.607C>T) of the PACS1 Gene. The mutation causes gastric issues, intellectual disability, speech impairment and other health concerns. PACS1 is frequently misreported, even in medical journals. In July 2020 a researcher published a study that stated there are 35 known PACS1 children in the world.

This is why PACS1 Awareness is so important. In reality back in July 2020 there were 150 families connected through a PACS1 support group. As of today, Feb 7, 2021, there are over 165 families to celebrate PACS1 Awareness Day.

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When age became important

I have never had an issue with age. When the girls went to pre-K, I did not cry, they were supposed to go to pre-K. The same is true for kindergarten, middle school and high school. I do not look at Abbey and think, oh she is getting so old I want her to be young again. When it was time to go for her license I did not think: I want my baby back. I thought thank goodness she can drive herself to work.

Bridget’s milestones are different, but I have never wished for my baby to stay my baby. Maybe because I’ve always known she is my forever child. I think it is more, I expect both my children to grow, to gain independence and to become more than I ever dreamed.

Then I turned 50. Suddenly this shit got real.

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I’ve become an OG of CHB

Bridget is having a procedure that will close a hole in her heart at Boston Children’s Hospital. The other day we were here for Pre-op, almost 12 years after her first visit when we were rushed into the NICU.

I was able to see how very far we have come in our journey have having PACS1.

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A tiny step into the new normal

Bridget is back in school, but not in any way I imagined when our world imploded on March 13, 2020.  Her summer program began this week. She was offered the opportunity to continue remotely or attend in-person sessions with the staff and classmates.

I did not even hesitate, get the child back to school! Continue reading

Let’s raise a glass

If we were sharing a glass of wine, I would lift a glass in toast to you:

The Educational Support Person who may or may not have a background in special education but is learning not only how to teach online, but teaching a child whose biggest accomplishment in your session is that they did not turn off the computer on you.  This teaching is brand new to both you and the child, yet you persevere. Continue reading

I have Play-doh in my house, on purpose (Guess how I am feeling)

There is Play-doh in my house.

For those that know me, you know that this is a very big deal in my home. I banned Play-do to be used only in the unfinished basement back in 2006 when my then 3-year old not only imbedded it into my kitchen table but my semi-new kitchen floors. Continue reading

I was shocked

I reached out to Bridget’s special educator explaining the barriers we were having at home teaching Bridget. How we have to model everything, hand over hand, we have to point to the words in reading and do all of the scribing for the written work. On the computer for math we have to read each question and then help her find the answer. Within moments she called me, of course you have to do all this! She is a 1:1 for academics.

It was a shock.

Not that she is a 1:1, I have her IEP practically memorized. Continue reading

There goes her IEP (or so I thought)

According to the Individual with Disabilities Education Act (IDEA) is supposed to provide children like Bridget with a Free Appropriate Public Education (FAPE), just like her GenEd classmates.  When the Government needed to close the school systems to protect our residents, it was with an abundance of caution but without thought on how to protect our most vulnerable student population. Instead the Department of Education (both State and Federal) went into protect us from special education parents mode. Continue reading