Tagged "special needs"


SPD, Dyspraxia and Trick-or-Treating

Posted by Casey Roy on

How do you approach the holiday of Halloween? What would you wish for your special needs child?

Back in the day of young Elizabeth, I would have ensured that "Trick or Treat" time was:

  • during daylight hours
  • on a weekend or a Friday

Trick or Treating during the day would help her handle strange costumes and sounds, because she could see them.

Trick or Treating on a weekend or Friday was because fatigue would be reduced: either due to the fact that she did not have school that day and she could prepare, or that if she got very tired and overwhelmed, the next day would be a day off and she could decompress.

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Halloween Guide for Kids with Sensory Needs

Posted by Deborah Grauzam on

This year for Halloween, Elizabeth is simply going to pass out the candy with me or perhaps with a friend by her side. She is not dressing up for the event, at least not at the time of this writing. This is not to say she won’t change her mind and end up dressed and passing out candy.

But in any event, her prime trick or treating years are behind her. Which is kind of a shame because she is truly the Zen master in the art of trick or treating. She simply loves it all. From the costume, to the hunt, to the haul. Well… I should say, after a few years in, she loved it. But not in the early years…

The first few years she was deep in her sensory issues, so she cried and looked so fearful as I put her in her costume. And yes, I still put her in it.

Tears and all.

Because I did not know any better. I did not know what else to do.

So the whole night was pretty much stressful from start to finish. And it was an early finish you can be sure.

Then came the later years. When she wanted to go, but could not really talk. So the dressing part was easy.

It was the trick or treating part that was hard. Because she could not talk.

So I talked for her.

I talked about her in third person…”Elizabeth would love this or I am sure Elizabeth is happy to see you too.”

It was not fun to write about it now let alone, do it then.

I did it because, again, I did not know what else to do.

Finally came the last few years. And it is here that I knew what to do.

And it was pretty great and continued to be so until we encouraged her, at age 18, to hand up her pillowcase and join the adults to help pass out treats.

So with a couple of decades of experiences behind me, I wanted to offer up my thoughts on how to have the best success for Halloween. Hope some of them help you.

TalkTools | halloween candy

1. TRY SOCIAL STORIES!

If you cannot find one to fit your needs for Halloween, write one.

In it you can put down all the things you will be doing, what your child will see, smell and hear.

And you can put down in it, the things you want them to do through the night. Like, take only one piece of candy. Because do you really want to have to say “take only one, honey” all night? Sharing and talking about expectations really helps, even the youngest ones. Again, my opinion here.

 TalkTools | trick or treat

2. THERE ARE EASY WAYS TO HELP YOUR CHILD SUCCEED

What I wish I would have done instead of talking in third person is help others understand Elizabeth’s needs. Meaning, letting others know that she struggled with talking would have been quite helpful, then they would not have stared at her waiting for a response.

This goes for any of the other issues special needs children face. Such as eye contact, conversations, waiting for the treats, whatever it is, I feel that helping others understand simply makes it so much easier.

Making up a card that helps people understand your child is something that would help them be successful. The words are there and you can hand them as you go.

An example of the card I would have used is:

“My child cannot talk well, please hand the candy to her. Thank you so much“

It can be anything you need people to know as they see your child.

It is an easy way of advocating for your child.

TalkTools | hug

3. YOU DON’T HAVE TO DO IT ALL TO CALL IT A SUCCESS

Sometimes it is so easy to look at what everyone else is doing and compare. May I offer….DON’T!!

They are not living your life, nor do they have a child who has your child’s special needs. So please allow yourself to call the holiday a success, even if it is by no other standard than your own. Because only you know how hard your child worked that night. Only you know that they did something new this year.

If you got to three houses and everyone had fun, it is a success.

(The fact that Elizabeth did not cry at all one year, made us feel successful.)

It is all about perspective.

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I offer out to be proud of yourselves for continuing to offer life’s experiences to your child when sometimes it would be easier to take a pass.

My hope is that you and yours will enjoy the holiday and make memories that are yours to keep forever.

I wish everyone a peaceful month,

-Michele

Michele Gianetti is a mom of three, registered nurse, and published author ("I Believe in You," "Emily's Sister"). She writes for TalkTools Blog every month about her experience caring for Elizabeth, her daughter with Sensory Processing Disorder and Dyspraxia. Follow her story since the beginning here.

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FREE Tools & Webinar to facilitate back-to-school for the special needs!

Posted by Deborah Grauzam on

Michele Gianetti, RN introduces her work with Monica Purdy, MA, CCC-SLP on helping parents of special needs children getting back to school smoothly. It includes a free checklist and article published in Parenting Special Needs, and a free webinar with TalkTools happening September 16, 2017 from 12-1 p.m. EST!

The end of Summer! Or is it?

I know it can be quite confusing when you enter into a store to buy stuff for a picnic and you are assaulted by the sight of mounds of backpacks and posters of smiling children all nicely dressed for the new school year.

The way retail works is like having life on fast forward. “Enjoy Summer but, in case you want them, the Halloween candy is freshly stocked in aisle 10.”

So we are faced with seeing the school year on the horizon a bit earlier than I would like. For me, the thought of a new school year kind of makes me nervous. Not so much from the idea that we cannot handle things, after all we have been doing this for a long time. But from the understanding of the amount of work it does take to make sure all the “t’s” are crossed and the “i’s” are dotted for a new school year.

There are a lot of things to get in order, and a lot of them involve communication of information.

From the home to the new educator.

From the therapist(s) used in Summer, to the home and to the school therapists.

From the home to the intervention specialists.

It does take work but it is, in my opinion, critical for success and growth.

My communications over the years have taken on many different forms but in the last seven years, we have settled on a communication system that works.

I have always been such a firm believer in the importance of communication between all the members of “Team Elizabeth.”

This is why I am so excited to share with you the article that recently got published in Parenting Special Needs!

The article was a wonderful collaborative effort with Monica Purdy who is a speech therapist, as well as on the TalkTools speaker’s bureau.

The article centers on the area of Sensory Processing Disorder (SPD).

The article contains some great PDF files of templates for communication with the school that I have used, such as:

  • The “introduction” letter which tells the new educator and staff all about your child.
  • The “Update” letter for the intervention specialists which provides them all the updates about your child since school ended in the Spring.
  • The daily communication sheet- which is easy to use and can be changed as needed.

These PDF’s can be very helpful, either in the form they are in, or as a baseline for you to use to make your own.

I invite you to read the article and hopefully, it will help you as you plan the start to a new school year. Or perhaps, it will give you guidance if you are just now starting your journey with your child.

Please watch this page for information about the free webinar that is happening next month based on the information in this article: "Webinar - SPD: Becoming an advocate for your child."

I wish everyone a peaceful August and hope to “see” you at the Webinar.

-Michele

Michele Gianetti is a mom of three, registered nurse, and published author ("I Believe in You," "Emily's Sister"). She writes for TalkTools Blog every month about her experience caring for Elizabeth, her daughter with Sensory Processing Disorder and Dyspraxia. Follow her story since the beginning here.

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Elizabeth: Mindfulness

Posted by Deborah Grauzam on

I know we have all heard the term Mindfulness.

And we are all made aware of the good of “being in the moment.”

To be “in the moment” requires that you are thinking, feeling and immersing yourself in whatever task you are doing or whatever place you are.

It means using all your senses to really focus on the moment you are in.

So easily said, but not so easily done.

This mindfulness is not something that is new to me, just something that is a bit hard to achieve all the time because life gets so busy.

And especially so when you have a child with special needs.

It seems that life is a go.

-From the moment you know something is wrong

-To the moment you get a diagnosis

-To the journey of therapies

-To the everyday life and its work

You are on a different path than most, one that requires a steady pace. One that requires stamina and focus. One that does not allow, usually, for opportunity to be Mindful because there are too many things that require us to be pragmatic, planned and scheduled.

I was thinking, again, about this concept of mindfulness this past week, partially because we just entered Summer time and mostly because our schedule is much less structured now then during the year. Let’s face it, I had a bit of extra free time, not usually provided.

-With this extra time I have been able to be more mindful:

-I noticed that as I was not clutching the steering wheel of my car, with one eye on the clock, I could see that the sky was a really pretty blue today.

-I noticed that when I stepped outside to play with Michael, that the air smelled so much like Summer, a mixture of grass, sunscreen and—well sunshine.

-I became aware of just how happy Elizabeth looked this morning as we planned out our day. “I am so happy to be off, Mom!” Was how it was stated.

I became aware of so many things, now that my usual school treadmill has been turned off.

And between you and me, I simply love it.

A lot!

This mindfulness lets in the really precious stuff that can at times be overlooked.

I think as we work so hard for our children, we should give ourselves the gift of enjoying these moments as fully as we are able.

So how do you do this whole “Mindful” thing? For me it starts with taking a deep breath and opening my eyes and telling myself to really see what is in front of me.

To really feel whatever I am holding.

To really smell the air and exhale out any stressful thoughts.

To let my heart hold onto the memory of what I am seeing.

I know we can see many things that make our hearts sad, like when our children struggle to talk/communicate or do a task. So allowing the good things to take hold allows us to remember the good stuff—the successes. Maybe carving out more mindful moments amidst all the day to day stuff would be a good goal for us all….me included!

I guess this blog is my way of saying that each person deserves the right and joy that comes with more mindfulness.

It is my way of encouraging others as they walk their own journey.

I wish everyone a peaceful, mindful month.

-Michele Gianetti 

Michele writes for TalkTools Blog every month about her experience caring for Elizabeth, her daughter with Sensory Processing Disorder and Dyspraxia. Follow her story since the beginning here.

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Elizabeth: The Terrible Two's

Posted by Deborah Grauzam on

The terrible two’s.

The tween years.

The teenage years.

Young adulthood.

These times are all markers of our live and the lives of our children. And we as parents are well versed in what to expect or at least what we are TOLD to expect during each these times in their lives.

We know that moods will fluctuate, attitudes will show themselves, peer pressure will mount and independence will be desired.

We are also told what to do, as parents, to guide them, educated them, keep them safe and oddly let them go.

But what does not get talked about or what is not as easily defined are the time frames of life that define those of a child with special needs.

For not always do the actual age of the child match the developmental age.

For not always do the expected moods or attitudes happen.

It is like every child who has special needs has their own game plan.

I speak from 19 plus years in on journey with Elizabeth.

There have been so many times in life that Elizabeth’s actions were not what was to be expected of a child her age or perhaps her emotions were delivered too strongly for what the situation was.

So as a result, the typical markers of life were never as clear to us as to others.

As Elizabeth has grown, it has always been hard to see a mood or hear a comment with a bit edge to it and wonder if it is because of her disorders or is it because she is 12 or 16 or 18 years old. Separating the disorder from the typical is hard.

Sometimes as I was thinking she was upset because of her SPD, my oldest child, Emily, would say something like “Remember Mom, I used to get like that when I was too tired.” Or “Mom, she is acting like I did when I was mad about something.” It was these reality checks, these windows to the typical that I would use when I was in this unfamiliar territory. Sometimes as moms to special needs children, we are so in the proverbial “trees” that we are unable to see the forest.

For the record:

  • Elizabeth does have moods- totally unrelated to her SPD or Dyspraxia.
  • Elizabeth does have a tough tone to her voice- again unrelated to her disorders.
  • Elizabeth has slammed a door, yelled that I am ruining her life and complained the “Nobody cares how upset I am!”

Elizabeth does NOT:

  • keep a clean room
  • do chores happily
  • pull herself away from television or her room easily.

Sounds pretty typical. Right?

It is.

But it is mixed in with the times that the moods ARE related to sensory overload. Or that the tone IS because she is frustrated by her Dyspraxia.

I have found that thinking of all the moods, tones, attitudes of Elizabeth, good and bad ones, kind of like sand on the beach that you sift through to get only the shells. It is like I have to mentally sift through the mood or emotions to finally get at the cause of the mood or attitude.

I try not to jump to the reason why.

I sift.

I think.

We talk.

And then I see the “shell.”

Then we talk more and depending on the “shell,” she is encouraged, hugged and we talk about what to do next or she has a punishment, revoked privileges or a required apology.

I will say that as I play back some really tough teenage moments with Elizabeth, I remember how I used to momentarily smile or laugh at the sound of her feet stomping up the stairs or hearing her tell us all that we needed to just “leave her alone.” It was like I relished the typical for that quick moment before I had to decide how to handle the typical.

I do know that making communication a priority when she was younger was a huge help as she has gotten older, but it is also doing the work to really understand your child, how they work and how their disorders affect them each day.

Our story is shared to make you smile, give a glimpse into our world and maybe help others on their own journeys.

I wish you all a peaceful month.

-Michele Gianetti

Michele writes for TalkTools Blog every month about her experience caring for Elizabeth, her daughter with Sensory Processing Disorder and Dyspraxia. Follow her story since the beginning here.

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