When the day is meaningless

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.  

****

Bridget is …. Bridget. In some ways she is the easiest child ever. She is easy to please, she more or less goes along with whatever we are doing.

She is also rigid. She expects on Tuesday to see Kelly and Maria. On Fridays she expects to go to the Y for swim.

She wishes every day was Friday.

Not leaving the house in 3 weeks has been an… adjustment for lack of a better word. She is rarely getting out of her pajamas (thanks to an older sister who has decided that it is PJ month because if you are stuck at home you should be comfortable). She is eating a lot of Pirate Booty. She is not on a schedule, at all. Though we are trying now that there is morning meeting with Miss J.

Abby’s school is restarting, which means my homeschool substitute will be otherwise occupied when Bridget is supposed to be online with her SPED team.

Even though we established a semi-routine last week, this week it is evolving again.

We are lucky that Bridget is not so rigid that she has to keep to a routine.

She misses her bus driver, she asks every morning, “I go to school today? See Nikki”.  We say, no school today and she is fine with a PopTart to replace the bus (sorry Nikki).

She asks for Sahana and Allie but when their next party is, not that she see them in school.

She does not ask for her teachers or classmates, which I find odd. But she did ask me to send a photo of her drawing to Miss Tina. I don’t have Miss Tina’s number so here is the drawing. (Yes, she is still in her PJs).

img_6225

I have checked in on friends, with children like Bridget. None of us want our ESPs to come over and be exposed. We want them healthy, but our kids miss them. We all feel isolated, although I am lucky I get to escape to work. We all feel overwhelmed and inept. We are all freaking scared that we are going to mess this up.

Bridget’s goals of being independent shorten every day. She isn’t on her own, someone (Abby) is always with her. She cannot walk to the Main Office and see Miss Heidi. I feel bad that I made her team work so hard on her goals, hardly any of them are being worked on.

Not because the team does not want to, but because we are not in school.

Her goals have changed, without the IEP meeting.  Now we are working on life skills at home. We are teaching home-ec and landscaping. We are working on not losing skills and acknowledging that we are probably screwing up all the hard work of her teachers and therapists.

We have hope, now. School is doing a morning meeting a few days a week. Therapies will be starting online (not sure how that will go).  I am not sure how this third week of the pandemic will go. I am thankful I am not alone in the journey.

 

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s