Archives for posts with tag: Motherhood

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

 

 

 

 

Something we have taught Elizabeth, quite early on in her life, is the importance of knowing her feelings and emotions.  Being able to identify what she is feeling has helped us help her on her journey of life because emotions and feelings are complex things and learning to talk about them is complex as well.

This goes for all people and more so  for those with special needs, like my daughter.  Her disorders are sensory processing disorder (SPD) and global dyspraxia.

So with all that being said, last night was a night that she and I had one of our chat times because  I could see how much she appeared bothered by a certain topic.  Each and every time this topic arose, she would get angry and or look nervous.

We needed to talk and talk we did. We had a pretty good conversation and a pretty good understanding from her of what she was feeling, which led to a pretty good understanding for me.  All in all a success.

Ah!  The world of feelings!

So as I was getting up to leave her room, I turned to look at her and she was smiling at me, with those huge blue eyes looking beautiful and bright.

Those same blue eyes I used to look at when she was a year old and screaming or when she was two and still screaming and when she was three, new to therapy, but calmer and so much less afraid of the world.  And on and on she grew and on and on those blue eyes shined bright.

I looked into those eyes then and knew!  I just knew she was in there.  It was my true feeling.  No matter who told me otherwise.  No matter who told me that we “simply had to do this or that.” No matter who told us:  “Don’t do that, hand her over to the experts or you will ruin her”   (This was truly said to me by a member of our school system years ago)

But no matter what was said, my feelings when I  looked into those bright blue eyes has fueled me and my family on this journey.  Not a smooth journey and not a completed journey, but everyday so far on this journey!

One time, when she was 2 and a half years old, she pointed to the cookie jar, she wanted a cookie. she made a random sound, then cried when she could not be understood.  I can remember giving her the cookie, probably so that she would not cry more even though she probably had like 10 of them, but I can remember her eyes twinkling as I handed her the double digit cookie, kind of like Yep, I got another one from the mom of mine.  There was mischief in those eyes!

When we are at church, a mellow song will come on and I will see her eyes brimming with tears, so beautiful and expressive!

Yes, it is those eyes that gave me the feeling that strengthened me and made me want to do more for her!

I write this because we are all on our own journeys.They are all different, but share the same drive to help our children be the very best they can be.  What motivates, fuels, drives or strengthens you will probably be different from the next special needs parent or caregiver but whatever it is,  it is yours and please don’t let it go.

Listen to it.

Hold on to it.

Use it when times are tough or the journey is uphill.

Or when others tell you “you can not”.

Hold on to it because it is yours and no one else is on the exact journey as you.

I know I am thankful for those bright blues eyes, because I got my strength from the feeling they brought to me and I do not plan on ever letting that feeling go.

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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