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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I am writing this blog right after we returned from our vacation.  It ended up being a week off, with us being away 4 of the days.  We had the weekends at home.

Our destination?  Niagara Falls New York.

Specifically, The  American side of the Falls.

We are not passport holding individuals yet and true to our form we decided to head to the falls a little too late to hope the government would issue us passports in time.  So we headed to the American side of the Falls.  John and I had been to both sides many times but Elizabeth was two when we last went and Michael had not been at all.

So I took my own advice when I talked with Elizabeth about our plans for the trip. She is  my daughter who has special needs. I told her the where, when, what, why and who of the trip. With her sensory processing disorder ( SPD) and dyspraxia, new things create anxiety for her.  A trip represents a whole bunch of new things, so typically she will be more anxious prior to any trip and this kind of talking helps her know what to expect and therefore how to prepare herself for the new things.

I have learned the benefit of showing her pictures and videos of where we are going and what we are doing, so  I showed her some YouTube videos of the Falls, The Maid of the Mist boat ride and The Cave of the Winds, walk under the Falls.

I showed her pictures of the place where we were staying, the trolley we were taking and the island we were walking around.

I also had her help pack so she would know we had all the things she needs and likes.

She packed her own flashlights ( she hates the dark), DVD’s ( she loves to have them…just in case)

She helped me pack the food.

I have learned so much on this journey with Elizabeth; so has each person in our family and that is really the key to success.  I heard her brother telling her what a good job she did as we exited a super crowded elevator or when her Dad told her how proud he was that she did something new.

So how did it all go?  I would say pretty well.

She decided the boat ride was NOT going to happen for her and we understood. She also did not care for the crowded elevator down to the Cave of the Winds  but was willing to do it to get to the water.

She needed a daily schedule to look at to help guide her transitions and by the last part of the last day, she told us how much she missed her home.

I am proud of her because it was a busy trip. We walked between 5-6 miles each day and spent a ton of time outside!  But she has been taught to speak up for herself so she told us when she needed a break and when she was fine.

We made some wonderful memories and have some great pictures to look at. So I will call it a success!

If you are headed on your trip, I hope you make some great memories!

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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