So hard to believe that Elizabeth is finishing her first year at her college program. 

I am so proud of her and all she is doing and all she is pushing herself to do.

For the child who once feared the loudness of the cafeteria at high school, it is wonderful to know she heads straight on into the crazy main student center at college.

I think that every once in a while, it really hits me that she is doing all that she is doing. And then other times, I see her have a meltdown or be really overloaded and I am yet again reminded that her disorders still play a big part in her days.

I was asking her, just the other day, about her day at college. It was a day when she was completing one of her internships on campus.  She told me that she had to work really hard to...READ MORE 

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.

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.

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.

I know that most of you know our story.

I know that most of you know that our beautiful Elizabeth has two disorders.

And I know you know that our journey has been quite winding and amazing.

But how about an update about Elizabeth?

Right now Elizabeth is 19 years old and is graduating from high school in June!

Yes, graduating from high school.

And I am having quite a few feelings about this ending of one phase and the beginning of the next. It is so hard for me to think that the very place we have known for so many years, that being our school system, will soon no longer be part of her life.

She will be in the “real world.” If you look at the wonderful young lady right now, it is very hard to think that she was non-verbal for the first five years of her life. The same goes for the fact that she loves life and is one of the happiest people I know. Her early years were the complete opposite.

So many good gains made and so many hurdles conquered.

But the truth is, she is still affected by her disorders. But it is in a much more subtle manner. It is like it kind of builds up, and builds up and then she has her overload moments. But the disorders are there and as we transition from high school to the next leg of her journey, those disorders can and will show themselves. I think that will be the biggest player in the next few months, especially as we talk and plan more for the Fall.

She loves her exercise, especially walks. She loves to cook and she helps out at a local catering business two or three times a week. She loves working with children and volunteers at one of the preschools that is housed in our elementary school. And on the other end of the age spectrum, she volunteers and bakes for the elderly at an assisted living facility. This is once a month.

I am so proud of all she is doing, so thankful for those she works with, who love her and understand how she works.

It has been hard to advocate for her throughout the years because there have been so many people who have shared their talents with her, which has been a blessing but also a challenge. I think back to the days when we sat down across the table from this year’s teacher to talk about SPD and Dyspraxia. Then working with them all throughout the year. Something that we have taught and continue to work on is “self- advocacy.” This is a tough thing for any child to do and especially so for someone with the disorders that Elizabeth has. So this is something that one needs in life and challenging as it may be it is a necessity. She is getting better and better at this self-advocacy.

Elizabeth has her supports in place wherever she goes and she knows who her “go to” person is in any situation. You know, that person she can directly go to if there is a problem or situation that she needs help with. We learned throughout the years just how hard it is for a person so affected by Dyspraxia to initiate the steps needed in some situations. Especially ones that require a quick plan or action. So teaching Elizabeth this vital concept and having her use it has been a big success for her.

So now she graduates …

So now she moves on …

One thing is for certain, we will continue to talk to her about any and all things, any and all emotions.

We just want to keep fostering her interests, teaching her each day and letting her know we believe in her as she takes this next big step.

If anyone has anything else they want me to update them on about Elizabeth, please let me know.

Also, to read more of my blog about Elizabeth’s future, please go to www.michelegianetti.com

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.