Archives for posts with tag: motivation

I was reading some posts on a social media the other day and one of them caught my eye.  It was about someone crying at their child’s IEP meeting and in the post, the author  asks if others had done this too.

The responses were numerous and similar in that many answered yes.

I felt such comradery as I read the post because I know many a time I held back tears at an IEP meeting or school conference.  Sometimes the threat of tears came from frustration, other times it was sadness and other times it was because I felt overloaded. And sometimes it came from the feeling of time passing and seeing how much Elizabeth still needed to do to “catch-up”

Suffice to say,  I understood what the author of the posts was feeling and asking about. I understood how much you just need to hear something positive or encouraging or even have someone come up along side of you to support you, be that literally or via social media.

So I thought maybe I would share a bit of a story to tuck away for when you might need that good thought. Read the rest of this entry »

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

 

 

 

 

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