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.

I have a friend who is quite spontaneous. From the last minute requests to meet for coffee to quick trips with her children, it is all done at the last minute and for her and her world, it works.

But for me and my world? Not so much!

I think something few people realize is that being a parent to a child with special needs changes so many things, but one big one is the loss of the spontaneity in exchange for a great amount of planning. So much planning goes into a what is a typical, effortless change of seasonal activities for others. From Summer to Fall and Spring to Summer, it all takes a great amount of work.

I say this because now is actually the time that Elizabeth and I begin to plan for Summer. Oh, I totally understand that is is only March. But I am quite similar to the retail world, you know a full season ahead of the actual date on the calendar? Remember how Halloween shows up around Labor Day? Well Summer is in my head and we have not had Easter yet. So with that in mind, I wanted to offer, in my opinion, the plan we have to help us transition to Summer. I hope they help.

Now is the time I think about Elizabeth’s goals for Summer.

- The ones we want to work on, not IEP related
- Do we want her to get tutored once or twice a week?
- Does she want to take any lessons?
- How many days will we be in a therapy?
- How many days a week does she want to volunteer?
And more….

Now is the time to talk to Elizabeth
- We talk about what she likes
- We talk about what she wants to do this Summer
- We talk about what she wants to take off the schedule.
And more…

The following are more generalized thoughts:

Now is the time to start making the calls
- If you are like me, the last thing you want to hear is that you missed a deadline for sign ups
- Or that the therapist is taking time off this Summer and you need to find someone.
- Or that the days you THOUGHT would work for something don’t and the days you wanted to be free are now not.

In other words, it is so much easier to get an idea of what is available now, allowing you to plan so much better.

Now is the time to make sure you have or do not have ESY
- That stands for Extended School Year.
- It is something available on the IEP
- It means, according to my understanding, that your child needs therapy during the summer so they will not loose skills or academic success
- For us it means that the school gives us a financial allotment to be used for summer therapies and tutoring,
- Sad fact here….I did not know about this early on for Elizabeth. Once I did, we had to have a fairly big discussion with the school to make sure we received it.
- So if this pertains to you, please verify it as you may have to have the therapist or tutor talk to your school about necessary paperwork prior to any summer work.

Now is the time to write it all down
- Put it all down
- Names of therapist
- Dates things are planned
- Phone numbers for easy access
- Ideas you have for extra fun in the Summer

Now is the time to remind yourself
- Put a reminder note in your April calendar to recheck with anyone you might have to call back and review your previous plans.
- Put a reminder in your May calendar to start talking to your child about summer, and keep talking as, for many of children, repetition is how they learn best.

I know Elizabeth and I are getting started on her Summer plans and so far so good.

I wish you all good luck as we all venture into another transition time.

-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.

For those who have been following our story on this site, you know that Elizabeth has struggled with speech and language throughout her life due to her disorders of Dyspraxia and Sensory Processing Disorder.

And because of this, we have had some form of speech therapy throughout most of her life. I say a form of therapy because early on we did a great deal of oral-motor work. Later in life, we worked on articulation for her words to be well understood.

When I remember hearing her say no words and now I hear her saying so many words, I know how far she has come. There are still misarticulations but these are habits now, not words she cannot say. And because of her disorders, sometimes volume control is an issue. Even taking complete full breaths needs to be worked on. I always say “we are a work in progress.” But truly, we all are.

The thing is, she is 19 years old. So traditional speech classes are not necessarily the best fit for Elizabeth due to her age and maturity. So for us, we needed to find the next best step. So when a former therapist steered us to the area of Music Therapy, we took a good serious look.

The look led to a meeting, then to a class, then to several classes and now we have officially welcomed this therapist to the ever growing and ever changing “Team Elizabeth.” The best thing is seeing how excited Elizabeth is to go to the class. She loves the therapist, she loves music and asks to sing every night (we get homework each week) and it could not be a better fit.

I, myself, did not know as much about music therapy when it was first mentioned. But with some research prior to going, I found out some really great things. So I wanted to share it with you. Please check out the American Music Therapy Association's website. There is so much information about what music therapy is and what a music therapist does.

I am so glad our therapist could take some time to answer a few questions. So here is the interview. I hope it helps someone who is looking for the next step or even to add something into their current speech schedule. I thought I would share them with you, in the words of our therapist herself.

Can you tell me a little about music therapy?

What is most important for me as a music therapist is the personal connection that I make with my clients. If there is not a feeling of trust and security between the therapist and the client, there is little hope for growth. I feel so fortunate to be able to use music as the tool in which I help people make change. Music is a motivator for so many people, which makes this form of therapy successful when other forms may not have been. It can be used with ultimately any population or any goal area as long as the person is motivated by music. Whether the goal is speech based, emotional, or range of motion, music therapy can be successful.

What kinds of speech or language difficulties does Music Therapy most likely help with?

The beauty of music therapy is that it can be incredibly versatile. Whatever the area of need may be for an individual, music can almost certainly be used to address these goals. Examples of how it may be utilized are pronunciation, by making words rhythmic, oral motor goals, by playing wind instruments or utilizing a preferred song to address difficult words. These are of course, not inclusive, as music therapy will look different for every client.

What is Music Therapy?

Music Therapy is the clinical and evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program.

Music Therapy is an established health profession in which music is used within a therapeutic relationship to address physical, emotional, cognitive, and social needs of individuals.

How would a person go about finding a music therapist?

On the American Music Therapy Association website, there is a directory to locate all certified music therapists.

-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.

It is officially the middle of the school year. Okay, not officially-officially but to me it is.

I find myself looking at the middle of January and realizing that fact and think WOW, that time already.

It is after this thought that I know it is time do my mid year check.

By this, I mean, I take a mental look at all the areas of Elizabeth’s life and see what successes we have seen, what struggles she has had, what changes we should make etc.

For me, it is easier to do check-ins frequently and catch anything that may be amiss than to have small problems grow big. Also, if your school system works like ours, February is the month of the second conference time. What better than to do this mid-year check and arrive at the conference time with clean, organized thoughts.

So with that in mind, here are some thoughts to help if you wish to do the same.

MAKE A LIST OF ALL THE AREAS OF YOUR CHILD’S LIFE

• speech
• O.T.
• Socialization
• School work
• Outside activities
• Things at home
• Anything else you can think of

WRITE DOWN THE POSITIVES AND YOUR CONCERNS FOR EACH

Here is the time to be honest: if something has been bothering you about a class or therapy, write it down.

ORGANIZE PLAN FOR EACH AREA THAT YOU ARE CONCERNED ABOUT

•  Some things may be going along great but for those that tug at your heart do the above.
• It helps to know who you need to talk to about the concerns. Which teacher or therapist.
• If I had a concern about speech and Elizabeth’s work in a class. I would know I could address this concern with both the speech pathologist and intervention teacher present. This way I could have everyone on the same page at the same time.

WRITE DOWN THE CONCERNS FOR OTHERS TO READ AND KEEP

• I am a firm believer that something written down and handed to a professional quickly helps them see just what you feel in a nice orderly way.
• Also, it is such a good idea to have a copy to show you did address these concerns or did discuss them with the teachers and therapist.

MAKE A PLAN TO REVISIT THE CONCERNS

• I always thought that to check back in with the teachers in about two to three weeks was a fair time.
• I would watch for any communications that would come home from the school on Elizabeth’s communication notebook.
• I would talk to Elizabeth about the concern.
• I would contact the teachers or therapist at the agreed upon time.

I am not saying that there will be a situation or concern at this time of year. But we all know that IEP time is coming, plans for summer are on the horizon and life for our children is one big fluid situation.

So my thought is stay that one little bit ahead so that you and I don’t have to run to fix something for our child.

I wish you all a calm and if it is winter where you are, cozy month.

-Michele

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

“That will be five dollars to get into the game.” Weird how those ten words can make me think.

Okay, perhaps you might need a bit of background information here. I heard those words as I entered my ten-year-old son’s basketball game this past Saturday. I had not heard those words since last year’s basketball season. A full year ago. 365 days ago. But it felt like yesterday.

And this got me thinking about time. Or rather the quickly passing thing called TIME.

When you look at your child’s pictures from years ago…what do you say? For us it is: “Wow, time passes so quickly” or “Where did the time go?”

It is a funny, crazy thing in life, this thing called time. Because it passes so quickly on one hand, but try to fill 15 minutes with a younger sibling while waiting for your other child in therapy and it passes more S-L-O-W-L-Y than you can imagine.

Holidays mark the passing of time better than anything I can think of. We can remember last year’s holidays and hardly believe we are here again. And we can get so into the things we have to do, the places we have to be, and the gifts we have to buy, that we can forget to take it all in and remember. And make those memories!!

I know that when Elizabeth was little, like one or two years old, and deep in the throws of her sensory needs, I spent so much time working hard to keep her “good” that the holidays were in my rear view before I had a chance to enjoy them.

I learned so much about life with a special needs child throughout all these years. Not only about Elizabeth and her special needs, but about how to manage them, encourage her, and help her. And be peaceful myself.

I learned that:

• We can skip an event because of Elizabeth and that is okay.
• We can plan something and change our mind if we need to for Elizabeth and that’s okay.
• We can be proud of the work we have done for her in this year’s time and that’s okay.
• We can make memories our own way and that’s okay.
• There is no one way to make Christmas special and that my friends is FREEING.

If you allow yourself to do the above, in my opinion, you can free yourself to make memories and enjoy the holidays to the best of your ability.

Something else to think about:

When you look back on the holiday from last year to this year, you can see the changes your child has made. Gains in words said, clarity of words, new skills mastered or even some good eye contact maintained. Whatever it is, you can see the growth as measured by the time frame of a year. So allow these positives to be a type of Christmas present to you and your family. Some of the best presents cannot be put in a box!

I wish you blessed holidays and more memories than you can count.

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