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.

Continue reading

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

You never stop

When you have a child with disabilities, you never stop researching and finding ways to improve their lives.

This COVID-19 pandemic and isolation is no different for us.  We were in shock for a few days, then we got active. We did not take off a few weeks of learning. The school system might have needed time to regroup and figure things out. We said, no school? Life skills! No idea how to teach reading? Let’s just try. They told us she can do math, okay let’s count our steps when we walk up and down them. Continue reading