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I have had many people ask me why it was such a challenge to find therapies, diagnosis or therapy items early on in Elizabeth’s life. I usually respond that “back in the day” awareness was so limited, there was no real open forums to find support or advice and there was really no internet to facilitate all the above.

For those who do not know, my daughter Elizabeth has special needs. She has global dyspraxia and sensory processing disorder (SPD). Her needs required much work and diligence to get the needed therapies and help for her.

Now flash forward some 20 years….. the internet is amazing, conversations happen in real time and we can find support and therapies in an instant. These are all wonderful things and for those beginning their journeys, help and support is readily available.

But one of the best things is that, awareness for any and all special needs is there! Those who do not have a special needs child hear about the puzzle pieces that represent autism support or the purple color that is the picked hue for DyspraxiaUSA. I had an experience last week that brought this to light for me.

Michael, my 13 year old son, was getting 4 teeth extracted to make room in his mouth. So we arrived at the oral surgeon’s office the day of the procedure, Michael was seated and the assistants were moving around him getting things ready. And as they did this, his heartrate, measured by the leads monitor on his finger, was reading much higher than normal.

It was his nerves and anxiety…this was to be expected. So I stood near him, rubbing his hand and trying to keep his anxiety in check when one of the older assistants said ” You know those things that weigh a lot, you know you put them on to help people feel calm…” to this I said “Oh, you mean a weighted blanket, yes! deep pressure is a good thing to help with anxiety for sure” She then said” We need to buy one and use it” It was here that I wish I would have brought our weighted turtle to the office. I made a mental note to ask about it, if we have a situation like this again.

But I think that raising awareness has made acceptance grow. And it is this kind of story that supports this.

So know that work that we all do for our children to advocate for them, to teach people how your child “works” and to speak up for your child each day help to raise the very awareness that makes conversations like I had with the assistant a reality. That our special needs community has made a difference!

Just something I wanted to share!

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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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 »

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