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.
Since Bridget’s birth we have integrated her as much as possible. We never wanted her to be the crazy aunt in the attic that only came down for the holiday family photo. We want her to be a part of her family and her community. We wanted Bridget to have a village. Her village grew from family, to friends, teachers, educational support personnel (ESP) and therapists. Continue reading
I was thinking over the weekend on how much our life has changed since March 13, 2020. Yes, there has been so much disruption. Yes, I have so much fear but I also have some new hope. I have hope that some of this new reality remains when life gets “back to normal”.
I hope that the new normal includes:
Less trips to the grocery store. I am realizing how my weekend routine of going to the grocery store is not necessary. I am noticing we are eating less junk / processed foods.
Spending less time on social media. Okay, not social media but in our town’s social media pages. People you have way too much time on your hands based on the over-reactions going on in those pages. There are actual posts that begin with “controversial” whose only intent is to start an argument. A shared meme lead to a family argument. Learn to scroll people, learn to scroll. Or better yet read a book, take a walk or do one of the hundred things you said you would do if “only you had the time”.
Spend more time reading. I’m reading every night since the teenager took over the remote and seems to no longer have a bedtime.
Keep sitting on the couch with the teenager at the night, instead of her hibernating in her bedroom. Having conversations like this:
Me: It’s nice you are no longer hiding in your room at night.
Abby: It’s nice you no longer have me on ignore because the Bruins abandoned you.
Keep playing cribbage every night after dinner.
Having less of a carbon footprint as I am not driving all over the freaking place.
Continuing to go without my Friday donut. I know it sounds silly, it is only $1.31 a week but two things: first, it is probably one of the worst “treats” I could eat and second: if I save that $1.31/week in a year I can splurge on a nice dinner out!
Writing more, I have not been writing as often because I forgot how important it is.
Hiking more. Every weekend we have been hiking behind our house for a few hours. Both with the girls and without. As the weeks go on they want to join us. Tho they might rather David didn’t always choose the path less traveled.
Eating together as a family. With Bridget’s after school therapy schedule and my school committee meetings we tend to eat on the run during the week. We have gotten used to Bridget sitting at the counter eating alone with her iPad. That has stopped during this time. We now sit together, without electronics.
Sleeping in on the weekends, not feeling like I have to get up and get so much done in the two days I have off. Of course having Abby being bored and organizing the house helps.
Bridget is not on her iPad as much. Weird, right? You would think with all this “down time” she would be on it more, not less. Instead she is doing dance party with Abby’s Alexa, doing her classwork (every day because hello routine), playing board games and balloon volleyball.
How about you? What is one thing that you are hoping transitions from this time in our lives to when we go “back to normal”?
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.
Let’s face it, times like this a glass may not be enough to cover everything we would share with just a glass of wine…
I would tell you we treated ourselves with take-out one night this week. It’s funny how much our lives have changed, I never realized how un-inventive I am when it comes to meal planning or how much I enjoyed eating out. Continue reading
When you have a child like Bridget, you are frequently told during normal times (not this crazy time we are in) to let educators be educators, let therapists be therapists. Be the mom (or dad) that takes the tools we are giving you (Bridget) and use them. We’ve taught her how to dress, reinforce that at home.
Then March 13, 2020, COVID-19 changed everything.
Families are not longer the reinforcers. They are the Enforcers. Continue reading
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. This will be a continuing series as we navigate how to parent a child with significant special needs.
It has been a very strange three weeks since our life changed forever on March 13, 2020. We are adapting to trying to homeschool. We are practicing life skills. We are trying to do therapies.
It’s been a difficult transition, but for the moment let’s focus lighter side of things. During this unexpected school hiatus, Bridget has:
Been a flower girl and walked on the beach (without tears) Continue reading