Tagged "special needs advocate"


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: How we made a medical team for ourselves

Posted by Deborah Grauzam on

Somewhere in my book I know I reference “Team Elizabeth” and at the time, it consisted of her OT, her exercise trainer, her tutor and her speech and language pathologist.  Her “team” has changed as Elizabeth has grown.  And the “team” reflects her needs at the time.

For example, when she was younger a vital member of her “team” would be her Ear, Nose and Throat (ENT) specialist.  And at another time, we would have added the name of the doctor who managed her brief, but productive and very costly foray into the area of biomedical treatment.

We now have an entirely different “team.”

It fits her needs perfectly.

They all “get” how Elizabeth works and know how to help her grow and achieve.

But how did we get these teams way back then? And how did we help them learn about Elizabeth’s disorders so that they in turn could help her?

Well, it all starts with getting through the first big block to this journey and that is to work your way through denial.   Maybe some were blessed to sidestep this feeling and maybe others were able to get to the other side of it quickly.  But for those like me, it was a pretty tough and pretty big force to face.  It took a lot of work on my/our part to allow the words about Elizabeth in, to face the truth that what we wanted to see and make real, was indeed not there.  It took us listening and not just hearing and allowing ourselves to feel the loss of typical and the acceptance of special.

After denial is behind you, the real work can begin.  Know that you as parents know something or things are not right.  You know in your heart the things you see each day are not what you are supposed to be.

Please begin by writing them down on paper:

  • When they happen.

  • How long they happen.

  • When you first noticed them starting.

  • How often they happen.

  • What you do or cannot do to help your child.

  • How these affect your child’s day.

These things are so important when you try to explain your child to a professional.  For two reasons:

  • You will NEVER remember them all when the moment arrives to tell them all.

  • It is easy to make a copy of the above and share it with professionals at will.

After all, you are the person with your child during a typical day, doing typical times.  How hard is it truly to have your child act like it is just any other day when they are in an exam gown or are in a waiting room for a long time?

Look up what you can about the signs or delays your child is showing.

I know that this can be unnerving but sometimes just trying to understand about a subject that is foreign to you can also be a bit of a comfort.  I know that reading about Elizabeth’s speech delay helped us make sense of some of the frustration we saw in her.

Print out what you want to share with the professional.

Talk with your child’s pediatrician.

This is where the things you have written down, the anecdotal reports, the internet information will help you help them understand.

Be honest and truthful.

Ask them for advice on where to go next.  Ask them for a referral for further testing if needed.  Ask them for a diagnosis if possible.  But do not allow the moment to pass, when you WISH you would have asked your tough questions.

Pediatricians currently are required to assess for developmental delays but when Elizabeth was young, they were not.  So they are more ready to offer suggestions of where to go and whom to call.

Please remember that you are your child’s best advocate.  And that if something feels wrong in your heart, then in my experience, it probably is not the right fit for your child right now.

Getting together the “team” that works the best for your child is a process.  Getting a diagnosis is important.  Getting the right professionals for your child is important but being able to present your child’s delays and needs to any and all who work with them and getting them to understand your child is by far more than important … it is critical.

Your “team” will be amassed over time and you will be the quarterback, managing them all.  

Please know that as the “team” changes it means your child has changed as do all children, those with special needs or those who are typical.   Change can be hard but change can be a very good thing.

Know your child, know their needs, speak for them and about them. And let them know you love them through it all.

Please know that a diagnosis is a very helpful thing to have for insurance purposes, school testing, IEPs, but sometimes before the diagnosis is made, your heart tells you what is “just not right.” For us, NO real language at age two. We saw a lack of motor skills.  Not walking, not sitting up.  And there were so many other things.

We made a list in our heads.  We knew we needed to find help for her.

-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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