Tagged "SPD tips"


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.

---

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.

Read more →

How Music Therapy Became Our Next Best Step

Posted by Deborah Grauzam on

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.

Read more →

Time For A Mid-Year Evaluation

Posted by Deborah Grauzam on

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.

Read more →

Some of the best presents cannot be put in a box!

Posted by Deborah Grauzam on

“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.

Read more →

How we deal with a special needs child on Thanksgiving

Posted by Deborah Grauzam on

Raise your hand if you cannot believe we are one day away from Thanksgiving, the official unofficial beginning of the holiday season.

I feel like I just shut my door at the end of Halloween and then … BAM, we are talking turkey, stuffing, days off and then ... gulp ... Christmas.

I try to remember what the holidays were like before we had our beautiful Elizabeth and I simply cannot. I try to remember what it was like before we had to wonder if the noises, lights, tastes, crowds and more, would make a fun time not so fun. And, again, I simply cannot. I think we have been on this journey with Elizabeth for so long that those previous times are kind of like in a vault somewhere in my mind. So as much as Thanksgiving can stress the most even-keeled of us, add in the challenges that are unique to our special children and like a good recipe for stuffing, you have yourself a recipe for a challenging day.

Think about it: the Thanksgiving holiday arrives just about the time the Halloween candy is still mostly uneaten, the leaves are still on the trees (it is Ohio) and the weather is kind of cool, not cold yet. See where am I going with this? There is no screaming announcement that this holiday is coming. It sort of creeps in as we start to see Christmas trees appearing in our stores and then it is THERE!!! Not only is it there suddenly, it is not typically a holiday that you can sort of attend.

- I mean on July 4th, you can go or not go to fireworks.

- On Easter, you can attend a nice dinner or schedule a lunch or brunch.

- But not for Thanksgiving!!! It is the big meal that makes it the very holiday it is. For those of you thinking “No, Michele, it is about giving thanks for all your blessing,” I will say “That is so very true and something never forgotten about the holiday.” But I am seeing it from the pragmatic point of view of how to help our children enjoy this holiday as best as they can. With all this being said, here are my thoughts on how to make Thanksgiving the best you can for your family and your special child.

It is ok to sigh first

I give total permission for any of us to simply sigh and feel all that we feel upon realizing that Thanksgiving is here. By that I mean: feel what you feel even if it is worry, dread or borderline panic or maybe simple joy. Feel it, do not deny it. I spent so many years pretending I was okay. I would squish down feelings of panic or sadness and pretend. How unfair to all. Me, my family, my husband and all those family members. Those same family members who could have supported us in these tough times. So feel it, talk about it, and lean on those who are there for you. You will feel so much less alone.

Make your plans

After you have allowed yourself the time to feel, now comes the time to make some plans. So many of us have the traditions that hold true no matter what. So know your families plans that lay before you. Do you have to be at Aunt Martha’s at 2:00 and your Godmother’s house for dessert at 5:00? And then somewhere in there you have to stop and say hello to your Uncle? Yes, those are the kind of schedules that, even as I write this, I have to stop and breathe. So as you look at the Thanksgiving holiday, truly think: “Can we do it all? Should we do it all?” and “How do we handle the things we cannot do?

I offer out maybe you can do it all, but will it be too much for your child? Will one successful dinner be better than several complete meltdowns?

I think that having a child with special needs should allow you to put aside the “shoulds” in these situations and do the best you can do. Hey, maybe all will be wonderful that day and you can do it all. But why not be honest with everyone beforehand and tell them you will try your best and then feel no guilt.

Bring on the reinforcements

In this case I am not talking about a troop of soldiers. I am talking about things.

A DVD player and their favorite movies. Trust me, nothing is more scary to a mom desperately looking for a favorite TV show at a relatives’ house, than to find that they cancelled cable the week before and all you can put on is either an info-medical or a football game. Neither of which will work, trust me, I have done the leg work on this one. So having their DVD player and favorite movies can provide them a bit of downtime.

Foods that they like. I most definitely encouraged Elizabeth to try new foods, still do as a matter of fact. But the truth is, when they are stressed it is harder for them to eat a turkey made a different way. Or in our world, it was mashed potatoes that threw Elizabeth. You see I use the potato flakes. She loves them. Then we come across homemade ones, with lumps! Well she was done after the first bite. So we learned to encourage her to try food but to have favorites packed in reserve.

Their favorite blankets (weighted if needed). How nice to cover them while they relax a bit with a show and get some deep pressure as well.

A bribe. One of my fan favorites. In Elizabeth world, food was and is the currency of choice. So we would pick one of her favorites and have it with us to encourage her to try a new food, to sit at the table well, etc. I am not always proud of my bribery, but I have learned to live with myself ;)

Share some expectations

While you want to help them enjoy the holiday by doing the above, you also want to help them continue to grow and achieve. So talk to your child about what you hope to see in terms of behavior.

- Tell them where you are going.

- Tell them who you will see, about how long you will stay. (For young children, I would use a reference they could understand. For Elizabeth, we used to tell her we would be somewhere for about one show.)

- Tell them about the different food they will see.

- It is also helpful for you to teach your child how to ask for a break if they need it. I know this can be hard with those non-verbal children or ones that are too young. But perhaps you can think about this as a goal for the future but in the meantime, if they look stressed, offer them a break. I never did this, I just kept pretending I was fine and pushing Elizabeth to “hang in.” So, I know what I could have done better and I offer out the above from that place of past experience.

Now give those thanks

- If you see something your child did this year that did not last year: give thanks.

- If you know you are stronger now than last year: give thanks.

- If you are simply proud that your family is smiling: give thanks.

So many of the simple things in life, the simple successes can mean so much to those who have a special needs child. They teach us to appreciate the minute things in life. And to give thanks. Our children are precious gifts. Give thanks.

Wishing you all a peaceful Thanksgiving.

Blessings to all.

-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.

Read more →
script type="text/javascript" src="//downloads.mailchimp.com/js/signup-forms/popup/unique-methods/embed.js" data-dojo-config="usePlainJson: true, isDebug: false">