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.
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
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
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
Today a very kind and wise friend said to me:
Isn’t it amazing how talking to friends face to face works wonders on your mood?
Yesterday was not a good day, until it was a great night chatting online with old friends. Continue reading
I am the mom that was devastated when we were told that Bridget would struggle but were not given a reason why, that traveled over 20 hours by car to see a doctor who might give us a diagnosis. We got a diagnosis, we got a family and we finally got support. Continue reading
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
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
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
How has your week been?
Are you ready to give up or did you conquer this week?
Mine has been a little of both.