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.

No physical therapy? Okay, let’s use the center island and replicate hand-over-hand as we “chase” Bridget around the island replicating the spider-man game in hydrotherapy.  Let’s practice yoga for stretching.  We need to build up stamina, let’s take a hike in the woods behind our  house.  We need to work on core strength, let’s do a bear crawl race. We need to work on eye-hand coordination, balloon volleyball!

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No occupational therapy? Okay this is one of biggest hurdles. When Amy left for another position she warned the new therapist not to “break Bridget” and undo all the hard work she had put in for years for Bridget to be independent. Now it falls completely on our shoulders. We have no help as we try to figure out how to teach the only left-handed person in the house to unscrew the toothpaste, wash a dish (which you think it would be easy, but hello it’s backwards!) and all the other things we took for granted with Abby.  One of the bonus moments of the stay-at-home advisory is that we now have the time and patience for Bridget to get ready in the morning or for bed at night. We no longer are “helping” Bridget get dressed to hurry up out of the house. Instead we can break down the steps and are assisting her independence rather than doing for our convenience.  She might not get dressed every day, but she is learning to clean the kitchen.

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No speech therapy? Hello Alexa! When Bridget wants to know what time it is, she asks Alexa and has to keep asking until Alexa understands what she needs. When she wants to know when I’ll be home from work, she has to voice text or call me to ask. We are trying hard not to let her articulation that she has worked so hard for to be lost.  Her school speech therapist has been incredible.  Meeting online with Bridget where she immediately realized that Bridget had stopped using complete sentences. A quick re-direct from her and we are now stopping Bridget and having her ask and answer questions.

We have gotten a glimpse at Bridget’s future, when the school system will no longer be there to support her.  We have a sincere fear that even if school and therapies restart, they will be limited support.  Over the years we have had to fight for everything in Bridget’s life. From IEP meetings to doctors listening when we tell them that no one understands PACS1 more than the parent involved in their care.  We have advocated from the beginning for Bridget to be part of her community.

We made a promise to Bridget the day we brought her home from the NICU, nothing will break her or stop her potential. She has defied anyone who said “she wouldn’t”.

The journey might have been made more difficult during this time, but that has never stopped her before.

And we won’t let anything stop her now.

 

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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.

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