Tagged "oral stimulation"


Elizabeth: Our Summer Speech Therapy Schedule

Posted by Deborah Grauzam on

So many parents, at this time of year, find themselves throwing out old notebooks, half used crayons, semi-dried-out markers, ripped folders all with the excited feeling that it is summer! Time to just relax. Right?

Well, if you have a child with special needs, that time of sheer freedom does not arrive in quite the same way.

True, you have a bit less of a rigid schedule, a bit less to prepare for each day, but to simply throw out the old school stuff and grab a magazine, lawn chair and plan what to grill for dinner is not how it plays out, at least in my experience.

If you ask anyone who knows me what I love the most, they would answer when my children are home. So of course, I greeted summer with a happy heart, and of course I tossed many a backpack into the corner of the hallway, but then I turned my thoughts on how to make summer fun while still meeting the goals and needs of Elizabeth.

So how did I do it and truthfully continue to do it?

Well, I think one thing I do is to spend some time thinking about some of the goals from Elizabeth’s new IEP that I would like to focus on during summer. And since we adjust her IEP in the Spring, I could use it as a bit of a guide. Once I have some ideas I try to visualize how I can slip them into the day.

Then I think of the things I wish to put into our everyday schedule, like instead of the TV in the afternoon, we would have some music time or some quiet reading time. For those who are younger, we would color or do play dough. Just something to calm ourselves, especially Elizabeth who needs this calming time, and to take a break from the “go” of the day. This is usually around three or four in the afternoon.

We also build in a bit of rest time. So after lunch, we all go to our neutral corners to either watch a video (them, not me) or rest (me, not them).

Of course, there are trips to the park, pool and friends’ houses in our days but I like having this loose structure because then you can build in the therapy play around it.

Something that I think is important is to know that therapy can be built into the play or activities of the average day. And this holds true for speech therapy as well. It’s just that you have to see each thing you do as a potential learning time and/or find ways to incorporate therapy without making it a “therapy time.”

TalkTools | horn kitFor example, something we did to help with Elizabeth’s oral motor work was to blow horns. We would get a number of different ones like the ones of TalkTools Original Horn Kit.  We would sit on the driveway, put a CD in the player and have fun blowing horns to the songs. I would encourage deep breaths and proper lip placement but after that, it was just fun to do this. Emily, our oldest, loved it too and she and Elizabeth would especially love Horn #4, that has the little spinney thing on top.  So we actually bought Emily her own set of horns to use to eliminate any fighting amongst the ranks.

So see, you get the oral motor work, breathing, fresh air and all the while it is fun.

TalkTools | bubble bearSomething else that is fun is to be on the driveway or deck and to bring out the bubbles.  We used to have the largest supply of bubble soap in the neighborhood and ours were even scented! Anyway, we had big wands to use standing up and this would work her whole body to turn and twist and to run after the bubbles to pop them. Then we would use TalkTools Bubble Bear to have her work on her ability to blow bubbles. The face of the bear made it fun. I would actually look forward to this because it was simply fun … but still therapy. One caveat is that you need bubble soap that makes good bubbles, like TalkTools Bubble Refill. This instant gratification is critical when a child is working so hard to make it work.

TalkTools | straw kitEven when bringing your child a fun, summer drink, remember that using certain straws, such as those of TalkTools Straw Kit, will help work with your oral motor goals.

If you are working on language skills, remember the rides in the car are great places to talk, to use descriptive language as you do errands, to ask questions of your child and to help verbally highlight words they may say incorrectly.

If your child needs help with knowing left or right, this can be worked on when driving as well.

TalkTools | toothettesFor those times when more concentrated work needs done, say with oral stimulation like with Toothettes or lemon swabs and perhaps some work with letters or words, I have found that a visual schedule is so very helpful. It lets the child see just what you have planned for the session and allows them to see what comes next. Which will hopefully help with the transition from one thing to the next. And in the case of Elizabeth, knowing when she was DONE was huge to her.

TalkTools | schedule boardI made my own schedule chart but one that I love and only wish I had when we were early on in our journey with Elizabeth is the TalkTools Schedule Board Kit.  I offer that using one of these is something that is so worth considering.

There really is so much you can do, these of course are just a few that we did. Maybe they will help get some ideas flowing. Please feel free to comment with questions or additional summer speech therapy schedule ideas below.

I wish everyone a happy, safe, productive summer. Ours begins tomorrow and I will again toss a backpack or two and then look to having a fun time as Elizabeth and I begin our 18th summer together.

Blessing 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. 

 

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A Mother Learns Many Lessons

Posted by Deborah Grauzam on

Elizabeth Blog Post | TalkTools

Elizabeth is one of those children, lucky or unlucky, depending on how you see it, who has a summer birthday. These children get to wake up and automatically be off on their birthday, go outside to play, and enjoy their day but they don’t get to celebrate their day with classmates in the form of birthday treats brought in, singing and signed construction paper cards from everyone.

Children like Elizabeth fall into the “Half-Birthday” crew. Where you can bring in a treat on the day that is exactly six months from your actual birthday and everyone will sing to you. We did not do that but many children do.

My son Michael insists that it is great to have the opportunity to celebrate “half-birthdays” but I secretly think it has more to do with him enjoying the number of treats brought in versus the actual sentimentality of the day…anyway, with Elizabeth having this Summer birthday we decided to make it a big one this year.

So on a beautiful day in June, we had bouncy castles and slides delivered, friends over and a rather delicious mound of cupcakes to enjoy. The party was to celebrate the day she arrived on this earth as well as the year she just accomplished. And it lasted all day!

Elizabeth was the happiest child on the face of the earth that day and those memories are safely tucked away in my heart and mind. We moved our way through a great summer and were riding the wave of happy for as long as it lasted…

The wave officially ended upon entering the school for the start of second grade. It was not that Elizabeth was upset or overly anxious. It was a combination of a few factors. One big one was that our inclusion teacher, the teacher whose class is picked to be the one as homeroom for the special education children who are being mainstreamed did not truly wish to be “the one”. She was less than happy to be in this capacity. I could tell by talking to this teacher and seeing her in action.

She had the inclusion children placed in a small group of desks off to the side of the classroom, very clearly making sure they were away from the typically developing children. Her demeanor was never mean, just conciliatory, as if she was just accepting that fact that these beautiful, special children were in her room, not trying to include them or encourage them to engage with other students.

Elizabeth would be with this teacher for everything but math and language arts. It was kind of hard to be part of this class as my hopes for Elizabeth included her being with typical children, to learn from them and to enjoy all that a typical classroom has to offer.

The other big factor was that the goals on the IEP were eerily similar to the ones on her first grade IEP. In other words, where were the goals that reflected the growth she made last year or even into summer? I was not entirely sure how to fix this as I was quite new to both IEP’s and school related to Elizabeth.

We had an evaluation with Mary our beloved therapist in October and it was at this point that I brought up some of our IEP concerns. When I brought them to the school, these concerns were mostly dismissed and by the time we really discussed them it was at conference time in November.

Even as I write this I cringe as November is in essence January. Because once you hit the holiday time on a school schedule, so many things happen at the school that adjusting goals of an IEP let alone changing the whole attitude of those working with Elizabeth, would simply fall to a place behind holiday programs, shopping with Santa, and the general holiday glee found in most elementary schools. And once you hit January, nearly half the school year is behind you. So the combination of these two factors led to my feeling so uneasy most of the year.

Why didn’t I push a bit more? A better question is why didn’t I KNOW to push a little bit more? This is due, I am sure, to my being quite the novice at this whole IEP process. As well as, how to be an advocate. But, to watch time passing and the attitude of those working with Elizabeth to be one I would term almost acceptance and lassitude, versus the one I have of “let’s go and raise that bar”, was so very difficult and frustrating. No one was ever unkind, but we seem to be quite far apart in how we approached the goals for Elizabeth.

Elizabeth was still working on achieving longer sentences and clarity. We would do the work from Mary at home, including oral stimulation done prior to the speech sessions to kind of “wake up her mouth”. The work was not always easy to accomplish because she was becoming tired of the oral motor work as well as being fatigued by the demands of a typical day at school. But still we worked on these goals.

We tried to work with our speech therapist to have her do oral stimulation with Elizabeth. We asked her to use mint toothpaste or lemon glycerin swabs to stimulate Elizabeth’s mouth prior to doing the oral stimulation with the Vibrating Elephant, purchased from TalkTools, and were told that she was not comfortable doing these things as Elizabeth did not always want to listen. I tried to explain her disorders to the therapist but she was quite reticent to try. We asked her to use the Jaw Grading Bite Blocks to help with her jaw strength and she said the school did not have these items to use. So, I offered to supply the school with the items.

It was quite the hard fought victory to have her actually try to do these oral-motor activities and as such, I learned yet another lesson. You may have to work quite hard to have the school truly understand your child’s need and then even harder to make sure they do all that is necessary for your child. I had such a hard time believing that this therapist would NOT do something for Elizabeth that was so necessary for her to continue getting clarity of speech. Simply put…lesson learned.

There were many lessons learned that year. I would say not too many were heartwarming, I learned to be more involved in her school days. I learned to communicate daily with her teachers. I learned an IEP is a working document and that adjustments can and SHOULD be made for the sake of the child and their continued success. I learned that settling back and trusting the school was NOT going to be in the cards for us and I learned that inserting oneself into the school at least once a month to check in things is quite essential. I learned that not every inclusion teacher is happy to be said “inclusion teacher”. I learned that even though we may raise the bar high at home, unless it is raised at school, the successes and gains of the child will not occur. I learned or should I say, I began to learn how to advocate for my child. You know how people talk about “sophomore slump”? I think we had a huge case of this.

I will say that through it all, Elizabeth continued to be the person she was before. Kind, sweet, caring and very well liked. I know she was blessed with the ability to kind of step over the negatives and continue to enjoy each day at school, being with other children and enjoying each day. These are the gifts that Elizabeth has.

The school year came and went in a fashion that I was ill prepared for. I wanted so much more for her educational and speech goals that year just did not come. Since the year would not be one in which Elizabeth learned a lot, I used it as one that I would learn from.

I did just that and when the year ended, I had a big, long list of things that we would address early in September, as Elizabeth would be entering third grade. As well as plans for me to meet with the teacher every three weeks.

This journey does not come with instructions and certainly does not come with a guarantee of success. We may have had a tough year but as the song says “what does not kill you makes you stronger” This year made me…stronger in my advocacy, stronger in my belief in my child and stronger in my drive to make sure all that could be done for her will be done for her.

The journey this year kind of twisted and turned but we anxiously awaited the chance to put to use all we learned.

Where will the journey take us next?

-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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The Best Gift from Elizabeth

Posted by Deborah Grauzam on

As our journey continued, I was able to revisit the “to do” category of a preschool for Elizabeth.  We initially had tried a preschool in our area that had half typical developing children and half special needs children attending.   We had thought it would be a nice fit for Elizabeth as she would get OT and Speech services as part of her day, some nice socialization and a new experience.  But what we thought would happen and what actually happened were two different things.  Elizabeth started to pick up some behaviors and sounds that we had not seen before.  As this was our first foray into any preschool setting with Elizabeth, we were taken aback.  We came to see that the school did not truly understand how Elizabeth “worked” and as such we knew our time at the preschool had to come to an end.  The whole experience lasted less than three months.  We were quickly learning that our role in helping our child included education of caregivers and new therapists and advocacy.  We were also learning that every twist and turn on this journey was teaching us something….even if we were not in the mood to learn.

This time of Elizabeth’s life, in my mind, is kind of the one that pulls on my heart a bit more.  We really wanted her to have a place to go to be with other children….but we were quick to see that wanting something for Elizabeth and actually finding it are two different things.  We could not simply sign her up for another preschool….this would not be something we could all happily anticipate.  No, with her dyspraxia, speech delay and SPD,  it would be work….we were quickly coming to see that even though we had done so much work with her prior, more awaited us.

We continued to work on Elizabeth’s speech as well as her OT.  We discussed with Mary, that we were going to look for another speech pathologist, one who would work the muscles in Elizabeth’s mouth or a Myofunctional Speech Pathologist.  Mary agreed that this would be a good fit and encouraged us to find her.

This type of speech therapy seemed to be just what we needed next.  We went three times a week to start.  We told the therapist all about Elizabeth’s disorders and she seemed knowledgeable about them and was very willing to try to help Elizabeth.

With much work, think oral stimulation with lemon glycerin swabs, actual physical manipulation of her tongue and lips, many oral exercises to make certain sounds many times. We continued these exercises at home, purchased many glycerin swabs and also the boxer vibrator from TalkTools to help with the oral stimulation of Elizabeth’s mouth and lips. We had new work to do at home but we knew all we did was making progress…and soon I got the best gift from Elizabeth right before Christmas.

The very best day of my life with Elizabeth happened…..syllable by syllable, with the therapist guiding her…  Elizabeth read a sentence from a Dr. Seuss book.   It was AMAZING.  Yes, it was slow.  Yes, it was syllable by syllable.  But it was a sentence.  Our first one…clear and understandable.    I really could not hold back a tear as I held this child on my lap and heard that voice that up until now had been half words, occasionally whole words, when nervous no words…….but was now present and showing us a sentence.

Something else that was wonderful was that this therapist had tested Elizabeth’s responses as we had been going along these few months and shared with me, my second gift, something I had been saying to everyone who worked with Elizabeth.  “Mrs. Gianetti, this child is extremely bright and motivated and she wants desperately to be able to talk.”   It felt wonderful to hear it from someone else and I did not ask her for this information, it was offered to me.

This helped us feel stronger in our advocacy for our child and whatever the next step was on this journey. Sometimes we have to realize, as parents of special needs children, that we need to listen to our heart and to do what feels right for our child.  With that said, we found a wonderful preschool for Elizabeth.  It was run by a friend of a friend.  Elizabeth loved it.  And just like Kathy said, she was so wanting this social outlet. Actually, this is the place she first met her lifelong friend Erica.

I am a firm believer that there is good in every situation in life, that some good comes of all things.  In the case of our first preschool experience, the good of it was that we learned about our need to advocate for our child.  We learned the need for good communication as well as the need for us to fully educate that staff about our daughter.

Well, we did these things and that preschool proved to be a wonderful, happy place for Elizabeth.

I guess you could say we showed Elizabeth the world this year. It definitely took effort and the need for us to regroup and try again.  But ultimately, so much good occurred.  Elizabeth was enjoying life, she made a friend, she had a place to go that was hers and we kept on working hard at home….we even had a first sentence the will always be remembered….yes I would say it was a good year.   The journey continues…..

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-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.

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Seeing the Trees in the Forest: Elizabeth Grows Beyond Expectations

Posted by Deborah Grauzam on

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I can remember that I was living so deeply “in the forest” this year that I did not “see the trees” I was so deep in concentrating on Elizabeth’s sensory needs, her therapies and their follow-ups at home as well as our older daughter’s needs and well...LIFE that I don’t think I looked up to take full notice of that changes in Elizabeth and some of her new growth. “Michele, she needs her own social group. Elizabeth is such a social child” That was the direct quote from our first speech therapist when Elizabeth was four years old. Kathy was her name and I simply trusted her completely. She explained how Elizabeth would follow and attempt to engage the children who had appointments before and after hers and how Elizabeth looked so happy being with other children. I remember taking a moment to let her words sink in and during this moment I wondered if Kathy WAS right...was I so busy doing “life” that I did not notice? WAS I so busy getting from day to day that I simply did not have the time to see that this was the next step for Elizabeth? Sometimes when you are dealing with the special needs of your child, you can forget the “typical” needs they may have.

I found myself quite thankful for our therapist for a new reason. At this time, we had been on our journey for about two years, maybe a bit more and as such, so much was new to us. But the one thing I realized for the first time then and truly countless times since, is that the therapist can become a dear friend to you and your child. And as such they can have opinions and ideas for and about your child that can be very helpful. They can teach your child things you cannot, and expose them to ideas you don’t have the ability or brain space to figure out how to do. This is a good thing...no, this is a GREAT thing. Listening to Kathy made me think of this thing called socialization....So much socialization takes place in the school or preschool setting....Social skills are being learned and mastered and one of the key pieces of socialization is the ability to talk. Which Elizabeth is working hard to do. It is the sharing of feelings and thoughts. This is not such an easy task when words are at a premium, clarity is questionable and sentences still remain a future goal. I heard what Kathy said, filed it away in my “ Look into it soon” category and started to look.

The preschool hunt was on but it troubled our hearts that the words said by our daughter were coming but they were still half words and if she was stressed, there were no words and if she had fluid in her ears, (which we began to battle as long as 2 years ago), there were only unrecognizable sounds. There seemed to be a piece that was needed. We visited Mary and she discussed our need to work on the muscles in Elizabeth’s mouth not so much the oral stimulation as we talked about last post but to add in muscle work...kind of like a gym workout for her mouth. This was to help address the dyspraxia, which was why Mary showed us the bite gradient sticks from TalkTools and told us we were to try to use these to help strengthen Elizabeth’s jaw. She told us how to count to 10 while Elizabeth bit down and then to have her stop and then repeat. This was quite the undertaking as sensory issues always played a part. But we were able to achieve the goal.

Mary also had us working on using a tiny circle, called a lip block, that we were to put on the end of Elizabeth’s straw to keep her from putting the straw so far in her mouth that she was sucking on the straw without using her lips to create the seal. Therefore we would be working the muscles in her lips and how she used a straw each time she drank. Please note at this point, two important facts. Number one, Elizabeth absolutely never drank without a straw and so, number two, Elizabeth grew to hate the little circles. I bought several so that if they were to “mysteriously” disappear another one would magically appear. It was the battle of the straw circles, I smile as I think of her spunk regarding these lip blocks.

But as were doing these things we were strengthening those muscles that helped make CLEAR sounds then CLEAR words.... Mary also had us use some time each day to look at and talk about facial expressions. To help her see and talk about feelings associated with the faces. When you have been afraid of life for so long as Elizabeth was....and when you can’t hear as clearly all the time, it is difficult to discern emotional expressions. It was kind of fun doing this with her. To play act the emotion. And it helped Elizabeth to talk about feelings and emotions and to know that EVERYONE feels all the things that she feels.

These additions to our already rather full follow-up therapy schedule was hard, we were already working on a number of things so adding more was difficult and the very fact that we needed Elizabeth’s cooperation to accomplish these new ones made it difficult Elizabeth was still being brushed to help with her SPD and she appeared happier than ever but.....those sensory issues can rear themselves when she is stress and I can remember quite a few tears as we worked our way through these new sessions. But what kept us motivated was knowing that what we were doing was not just teaching her newwords but helping her mouth and its muscles be stronger for life.

Dyspraxia and these sensory issues just do not let go....but we now had a plan to address this oral component of her dyspraxia...we had new and a bit tougher work to do and we had the idea placed in front of us that preschool may be a good fit for Elizabeth. Quite of few new things are in front of us on our journey...the path twists and turns a bit but we are seeing good things...our journey continues......

-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.

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It's Not a Sprint, It's A Marathon: Elizabeth Begins Therapy

Posted by Deborah Grauzam on

The words did start to come but they were words that required a great deal of work to understand or as in the case of many, they required me to translate. I remember how it was to automatically have the person to whom Elizabeth was speaking turn to look at me as if to say “ WHAT is this child trying to say?” I would of course translate and all would be well. But what I wanted to know was why the words were said halfway or why she would mumble.

I guess I thought that once we started speech therapy it would be like a dam opening up and “Voila” we would have words, sentences and thoughts...in other words, all would be well and we could get over this thing called a “speech delay” and move on.

We were new to this therapy thing...in fact since we had started occupational therapy, it was like we were waiting for SOMETHING to simply fix the problem. The problem being her SPD and dyspraxia.

“Ahhh, so much to learn” is what my current self wishes I could tell my former self. “Be patient” is another, “Settle in for a marathon, not a sprint” is the third but the most important thing I wish I knew at the beginning of this journey is “ There is no FIX as Elizabeth is not BROKEN, just wired differently” Had I not been looking for a fix so much, I might have been able to adjust my reality but it was like I was just waiting for the “Ah-ha” moment, the thing that would set it all right” Alas, so much time and thought wasted....

We were blessed to find Mary, our still beloved speech therapist, who works on the SPD and dyspraxic issues with Elizabeth. Mary explained that Elizabeth’s dyspraxia affects all of her muscles and motor planning including the ones used to make breath, make sounds and words. I did not know this and once I did it all made sense. That is why the mumbling, that is why it is such effort for her to talk. I finally understood.

One session with Mary elicited a seven page list of things to do to help Elizabeth with her dyspraxia and SPD. A brushing protocol every two hours, exercises to help with balance, lotion rubs. And many things for her speech.

This appointment with Mary was life changing, the brushing protocol was one of the things that made the biggest change in Elizabeth’s life. We stuck to the protocol and as we did, the calmness and peacefulness came. We had made some headway before, but this protocol by far made the difference. As a quick side bar here, we brushed Elizabeth every two hours, everyday, while awake, for over two years....that is how much this protocol helped her!

I learned about a thing called “oral stimulation” As I learned we needed to stimulate certain areas of Elizabeth’s mouth to help her learn to feel those areas and to help her use this new awareness to get her to move those oral muscles and make words.

We used a special brush called a NUK brush. It was a special soft bristled brush, used in non-therapy settings to clean an infant or young toddler’s gums and teeth. But used in this therapy setting, it created an awareness of her mouth. We were to try getting Elizabeth to do blowing exercises to strengthen those muscles and instead of my usual filling in the blanks of each half said word, I was to do it with verbal highlighting. For example, if Elizabeth said “ I wah...” I was to say “ What is it that you WANT?” Thereby helping her to think of what she wanted and also to hear the word she said halfway, said in completion.

That was a very new way for me to do for Elizabeth as I always just said things for her. One of the things that this journey was teaching all of us is that the way we used to do things is no more...there is a new normal now. This attitude became the prevailing one in our house, as we all learned to do everything with a purpose. Meaning we began to look at all the things we did in a day and see how we could incorporate some sensory or motor benefits for Elizabeth. So pushing in the chairs at the table....sensory input,marching up the stairs...sensory input, pillow fight...motor planning...

Once you get in the mindset, therapy can happen all day without it being THERAPY!!! You can accomplish so much more this way and the child can see it as play and you can be happy because there is a hidden benefit.

First we saw the beginning of words...now we have a more complete picture of Elizabeth’s needs, a wonderful new therapist at the helm...and a new therapy plan made to address ALL of Elizabeth’s needs. I think we may just now have stepped onto the road that will get us to the next goal....I cannot wait to walk on it.

-Michele Gianetti

Elizabeth

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.

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