Archives for posts with tag: Inspiration

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

 

 

I was having a discussion with a new friend the other day.  It was about the topic of friends, the need for good ones and the ever growing number of social media “friends”.  In the conversation, I told him about my three very close friends.

You know the ones you can call and not even say hi before you launch into the reason you  are calling.

The ones who know your life and world so well that you don’t have to give any back round information before telling them a new thing.

Yes! those friends.

And I am grateful for them.

Having a child with special needs can be so very isolating. While others are at the park with their children, you are in a therapy session. Or a birthday party is NOT fun for you because you are on pins and needles just waiting for your child to meltdown from the noise or activity.  My daughter Elizabeth has special needs, for those who do not know, she has global dyspraxia and sensory processing disorder (SPD).

So we did feel isolated.

And sometimes I guarded myself against a new friend for fear they would not or could not really understand.  In the early years, maybe I did not truly give those people a fair chance but it was probably because of my need to protect Elizabeth and if I am being truthful, myself too!

I did not want to see the sad looks or hear the pity in their voices when they talked.  Was it my issue? Maybe but it was where I was at the time.

But it was later on the journey that I

I learned to trust a bit.

Reach out a bit.

And let a new person in.

Because the feeling of isolation is real and having a trusted friend or two can make all the difference in the world.  I am grateful that I trusted these friends and I am grateful to have them in my world. I know how hard it is to trust, I have been hurt too, but I equally know how hard it is to feel alone.

I wrote this because I wish someone would have told me to do this early in our journey.  To let someone in a bit, then a bit more.  Maybe these are words that someone could use today, I hope so.

I don’t need to see that I have 1,000,000 friends on a social media site, because I do know I have my wonderful few!  And for them, I am grateful.

My wish for you is to find yours few as well.

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”