We are well into our third week of being off for the pandemic.

We call it Covid 19, Elizabeth just calls it “The Virus”

When she asks if we can go out to eat, I answer “Not now, but hopefully soon” She responds “I know, its the virus.”

When she asks if she can hang out with her friends.  She gets the same answer from me and then says “I know, its the virus.”

So “The virus” is what she blames for all the changes in her life.  The thing that took away all her activities, time with friends, school and more.  I share with her that she is not alone because everyone is doing their part ( or should be) by staying home if they can and that in time, “The virus” will go away.

But until then? We are all adjusting to the new normal.

I told everyone in last week’s blog that we are doing okay so far.

Well this week?

The report is a bit different.

She is starting to show signs of Read the rest of this entry »

So again, by the time you read this, we will be nearing the two week mark at home.

How are things going?

Well, for the most part, we are doing pretty well.  I will say we have gotten into a routine that we all take some measure of comfort in.  Especially since there really isn’t anything else ROUTINE about our days.

We have had good luck making a loose schedule for the day for us and one for Elizabeth.

Her special needs of dyspraxia and sensory processing disorder ( SPD), for her, mean that having an open day or a nothing day won’t be relaxing.  In fact, it can be pretty anxiety producing.

So we make a schedule of the things we need to do, mixed in with the things we want to do to have fun, along with her workouts and some quiet time( think heavy blanket)

So we are holding tight.  She has had some moments where she will yell a response to a question out our sheer frustration.  And it may not be a stressful situation or question just at that moment it was too much for her.  Honestly, she is probably doing what we all wish to do at given moments during this hard time but we can’t.

She and I have been doing a great deal of talking.  I think she is once again seeing the power of words.  She is really working hard during this shelter in place.

Something that came to mind this week, thank you straightforward Facebook post from a friend, is the need to share with family and/or a trusted friend just how your special child works.  I know we know their day and I know those living with us know our days with our special needs child.

But I ask….Do they REALLY know?  I mean do they know where all the paperwork is?  Medicaid or SSI or even therapy reports?

Or what to do if your son or daughter has signs of a meltdown or anger.

Does someone other than your child’s primary caregiver know their favorite food, show, calming techniques.

With such uncertainty in our world, maybe now might be a good time to write some things down.  To let the letter speak for your child if they cannot and if you/other caregivers are not able to manage their days for a while.

I can tell you for great certainty that I have seen what happens here around day 3 of my being ill.  I need only think back to February of this year.  It wasn’t bad bad, just not what helps keep everyone on as even a keel as possible.

So as we end week 2, I offer out hugs and support to those who are managing the twists and turns of this new normal we are in!

Be safe! Stay home and I will talk to you next week.

Michele Gianetti author of:

I Believe In You: A Mother and Daughter’s Special Journey

Emily’s Sister

Elizabeth Believes In Herself: The Special Journey Continues

%d bloggers like this: