Archives for posts with tag: siblings

As I was driving Michael from track practice this week, he and I noticed that one house had recently decorated for Easter.  There were several very large Easter bunnies in the front yard, a pretty holiday wreath on the front door and about 1,427 colored Easter eggs scattered on the front yard.   That house was a true melody of pastel colors and so fun to look at.

As we passed by the house Michael said “Remember how much Elizabeth liked to do Easter egg hunts?”  “Yes!!!!”  I told him.  And we talked about how many times she liked to hide the eggs as well as hunt them.  I told Michael that there were many things she liked in the whole Easter celebration but that many of them took some work to allow her to enjoy them.  This was due to her special needs of global dyspraxia and sensory processing disorder ( SPD).  I told Michael we had to learn how to make the activities fun and low anxiety for her.

This got me thinking that now that we are 21 Easters into this journey, maybe I could share some of the things we did to help Elizabeth and maybe one or two of them can be used by you for your child.  So here we go: Read the rest of this entry »

Advertisements

For those who do not know our story and family.  I have three pretty wonderful children.  Elizabeth is our daughter with special needs, specifically she has sensory processing disorder (SPD) and global dyspraxia. Emily and Michael are her amazing and loving big sister and younger brother respectively.

We have had many conversations with Emily and Michael about Elizabeth, her disorders, her needs and our goals for her.

-Michael and Emily have seen how certain tasks or skills will make Elizabeth anxious.

-They have watched how her anxiety can make a situation go from fun to overwhelming.

-They have watched how hard she works for any and all successes in her life.

AND

– They have watched how John and I are working for, rooting for and affected by the journey we are on because the above things are theirs as well.

So the conversation Emily and I had this week really got me thinking.

Emily came home from one of her days on her pediatrics rotation.  (For those who do not know, she is in medical school and her this year she spend anywhere between 6-12 weeks on any given area to experience the area and help her decide what kind of physician she would like to be).  She just finished her OB/GYN rotation and is now spending her days with the young ones of the world and she loves it.

So back to the question, she asked me if way back when Elizabeth was small, would you have liked a therapist, or physician or even a medical student to share that they understood how you feel because they have experienced special needs firsthand? 

The reason she asked involved a child she saw that day and the mom’s emotions and advocacy.

I told her that I think I would have loved that but only if it was not said in pity.  I told her that having someone verbalize that they understood would have really helped me at some seriously tough times for Elizabeth.  Emily then told me she knows she cannot truly understand someone’s individual journey but rather understand from a shared perspective.

I loved that she thought of this and I realized so many times, those very people we trust to treat our children do not have the first hand knowledge of life with a special needs child.  Our hope, and I say “our” here is to help the medical world understand not only our child and their individual needs but also the feelings and emotions that life with a special needs child brings.

I thought of doing something a bit differently on this blog now, and it asks for some reader participation.

Could I now ask you your thoughts on the very question my daughter asked me?

Could you tell me your answer either here or on our social media platforms?

Also, could you tell me the one thing you want the world to know about you special needs child? I want to hear them and let the world know!

I will go first:  ELIZABETH HAS ONE OF THE KINDEST, MOST GENTLE HEARTS OF ANYONE I KNOW!

I hope you will take the time to share about you wonderful child! I will look forward to reading them as we let the world know about these special people.

I wish everyone a peaceful week.

Michele Gianetti author of “I Believe In You: A Mother and Daughter’s Special Journey” and “Emily’s Sister

 

 

 

 

%d bloggers like this: