Archives for posts with tag: Special needs parents

As we all close the books literally and figuratively on the school year, we can all breathe a sigh of relief as so many of us were not ready to have the responsibility of so much of our child’s learning land in our laps. We were not prepared to have all that added to our realm of responsibility.

For those with neurotypical children, the challenge of remote learning was real and required a great deal of work, but when you have a child with special needs the work is simply that much greater. Maybe or maybe not in workload, but for sure in the fact that maybe one child will thrive on a zoom call while for another that screen can create anxiety which will shut down any learning right away. One child will be able to work well with mom as the teacher, while another will always do better with someone other than their parents ( Elizabeth!).

Maybe your child’s teacher was readily available for help and maybe not.

Maybe your child’s therapist tried to do a session via zoom and it worked but what about when it didn’t…what then?

We were all challenged to help our special needs children succeed during this time so much so that I know I have forgotten some of the tricks we did to help Elizabeth navigate something or some of the feelings she had about these video calls, such as why she gets anxious or had trouble transitioning. I know I thought I would remember it all for sure but well…..there was a lot going on….so that is my excuse.

As I write this, there is a lot going on in the world. Corona cases are on the rise yet the swim club in our neighborhood was packed today. The experts predict one thing about the virus one day and the next day, something else.

So with all this going on I something came to mind to me and that is the importance of taking a few moments to write down just what your experience was with your child and remote learning. There may be a chance that remote learning is part of your child’s school year next year and you want to be able to convey as accurate picture of your child’s strengths and struggles. Because by doing that, you will help the school help your child. So maybe take a few moments and think back to day one and…

Write down:

-What worked well.

-What they liked to do.

-What caused stress.

-What emotions you saw.

-What they really struggled to do.

-Any behaviors that were present.

-Any changes in other parts of their days ( sleeping , eating etc)

Anything else that you think the school might need to know.

If you think about it, you, me, WE as parents and caregivers of these individuals with special needs are really the ONLY source of information, true first hand information about our children’s lives and feelings during this quarantine. So having good notes will help everyone moving forward.

Because we don’t know how the fall will look, being prepared and good advocate for your child can only be a good thing.

I wish everyone a peaceful week.

I wear a mask for my mom and others who could get very ill.

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

If I asked you what day it was, what would you say?  I think I would have to ask one of my children who would look on their phones and report the answer back to me.

I, myself, find our living so surreal.

We all typically love being home, but find ourselves seeing our home as a shelter from “the virus”

We typically love being together as a family but now find ourselves mostly seeing only each other’s faces.

In our state, spring is just arriving.  So that means the trees are starting to bloom, the flowers are starting to show themselves.  It all looks so pretty and full of life, which contrasts directly with what is going on in our world.

With the change of seasons comes a mental list of all the things that spring brings THAT WE CANNOT DO.  It is like we have to reorient that list because the backdrop to our Shelter in Place has changes.  In the last month, we have gotten used to understanding our new, temporary I pray, normal.  But there is something about spring arriving that brings brightness and hope and immediately requires  my brain to say…

WAIT!, REMEMBER YOU CAN’T…..insert spring related item here…..

This change in thinking is something that Elizabeth and I are talking about as we walk.  I know that she is feeling the same things that everyone else is because she asked me when the pool will open….so I am using our walk times to keep the chatting going. I think for us, this kind of talking/communicating is helpful because it is helps Elizabeth adjust what she thinks should now be happening with our continued reality.

We talk about feelings, make a list of the things we want to do when we are permitted, the fun she will have at work with her friends, later.  We talk because each day for Elizabeth brings feelings that I am learning NEED to be talked about today.

Then again tomorrow.

And the next day.

And the next day.

With Elizabeth’s special needs, talking about what to expect helps her make that mental transition more smoothly as well as vents her frustrations.  Her sensory processing disorder ( SPD) and its resulting anxiety can become a big player in her days, so talking about what to expect and how to adjust can help lower that anxiety.

I keep telling myself that I know I  am always mentally recalculating life and it is hard work!!  Let alone the special needs that our children face added in to the mix.

Since we cannot make the world fit the needs/wants of our special needs child, it is like we have to help them, as best we can, to understand and work with the world we all find ourselves deeply entrenched in.

I will share that Elizabeth’s telehealth last week went really well.  I have notes from Mary from it, that I need to make the brain space to process.  I will do it soon, but I cannot say exactly when.  We all know, life with a special needs child takes a lot of work minus this pandemic but becomes whole thing with it.  I also know we will always do our level best for these beautiful special children that we have!

So Corona day 24 is bringing in a new level of reality, maybe a bit more permanence as we leave one season behind and enter a new one.

Please stay safe and stay home if you can!

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

 

 

 

 

 

 

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