Wednesday, June 03, 2020

The struggle of a Pandemic with Special Needs

What a struggle this has been.

We are going on 3 months of staying at home. No school, no activities, no more routine, no more friends, no more human interaction outside of immediate family...

No more.

For a typical person, for a family with typical children, this can be, and has been a struggle. Explaining to your child why they can't see their friends, why there is no more school, why their after school activities are cancelled, is hard...

Explaining this situation to a 12 year old, whose hormones are raging, and has an acquired brain injury, that has affected all 4 quadrants of her brain, is next to impossible.

We already are experiencing so many new issues with Faith, that have been starting to show through more and more. Things such as obsessive behaviours, violent outbursts, inconsolable tantrums and potential increased seizures. On a normal day, these are difficult to manage, but dealing with these new behaviours during a pandemic is hell...and I mean actual hell.

We have tried to create a new routine, we have tried the online schooling, we have tried to do some new activities, we have video calls to friends... We have tried everythng. We have exhausted every option...we are done...

Today was particularly rough... Spent the morning with Faith, even took her to a store (second time in almost 3 months) she got to pick a hair colour, picked a new water bottle got her hair dyed, hung out with family, played in the yard with bubble's and toys etc...

She was having a great day...




Then I had to go out, I have other kids in the house to parent, and was gone for less than an hour...


This is what I came home to.  

Today is not an atypical day for us...this is what life is like during the pandemic, for our family. As an essential worker, who needs to go out to work and enjoys working, this is especially tough.

This is our struggle, and I'm sure countless others in our situation...

It is tiring
It is exhausting
It is like there is no end in sight
It is hard
It is beyond hard....

And we haven't even hit the summer yet. 

I'm not complaining about my life, and I love my daughter. She brings so much joy to our lives. I wouldn't change any of it. I just miss our supports. I miss our friends. I miss the connections we have that help to keep me sane during the hard times...

I miss life how it used to be and can't wait until we can regain some semblance of that back...









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