Tagged "Elizabeth"


Planning For Summer A Full Season Ahead

Posted by Deborah Grauzam on

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.

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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.

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Middle School Awaits

Posted by Deborah Grauzam on


TalkTools_Blog_Elizabeth_July1015It is funny but just as soon as you get used to something, that something changes.  I am sure everyone can sympathize with that, right?  Well, this is how I was feeling about Elizabeth’s new school year, her last year in elementary school.

I had managed to figure out a few things: 

 

 

  • How the school worked
  • How to advocate for her needs
  • How to make sure all the IEP goals were met
  • The things I needed to do each day to keep communications open
  • The need for me to visit the school for monthly check-ins

And suddenly, we were looking at our LAST year in this building.   Our last year with this group of aides and intervention specialists….it almost made me scared for the next step.

Being a person who likes control, (I am continually working on this part of my personality), I felt frightened of the next step for Elizabeth, middle school.  At the same time, I felt excited for the next stage of her life and the new challenges that awaited her.

Elizabeth’s fourth grade year was actually quite smooth. I was able to continue my monthly check- ins, incorporate the goals of the IEP into our school work at home, and communications between the school and our home were flowing quite well. I was so proud of Elizabeth and how well she was doing in school.  She had gained confidence in herself and her social skills.  In fact, I received many notes home regarding her gains in social skills.  Those notes made us all feel proud and excited at the same time.

We continued our work with Mary that included asking more thinking, open ended questions such as: “How do you think you should act in church?” as opposed to the previously asked “Please behave in church”, or “Let’s talk about the things you did properly in church”  as opposed to the ever present “Elizabeth, please use good behavior”. I learned that the thinking language was the next step in her growth, as it allows for her expression and language and it is not led by my words. We also continued the oral-motor protocol from before, even if she was not the happiest speech student to participate in this protocol of oral stimulation.

Something new to add to our daily lives was the realization that she is a “tween”, and as such some topics and concerns need to be addressed.  As children progress to middle school, the thought of puberty and all it brings does cross one’s mind.  Something to keep in mind with children with dyspraxia and SPD is that talking about new things early and often is the easiest way to introduce things.  And if you can do this talking BEFORE the time you might be needing them to act on this information, you will be more likely to have success.

With this in mind, Mary introduced a book to me titled “Taking Care of Myself” by Mary Wrobel.  I would quite highly recommend this book to anyone with children at the crossroads of their lives. The book is easy to read and understand, easy to discuss, and full of pictures for visual learners. As you can see, our work with Mary has changed a great deal.  Gone are the gross motor exercises and the work to get any sounds made, and in its place are the higher-level thinking questions and the focus on the typical areas of a middle school child.

It is so hard to believe that Elizabeth is a middle schooler.  It is so hard to believe how far she has come and to believe that our crying, scared, blue-eyed infant has grown into a confident, happy, bright-eyed tween.  As I say in my book, “Middle school, here we come!” Words cannot ever truly express the depth of our love for this special child or our belief in her or even our thankfulness that she is in our lives.  I know those who have a special needs child will understand and may be nodding their heads right now.

For those who have read my book, you will know this is technically the end of the “journey” covered there.  For those of you following my blog or my Facebook page, you will know our journey has continued and Elizabeth is now 18 years old. I look forward to writing future posts about Elizabeth’s life past those covered in my book, because we all know ….the journey continues.

-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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Stepping Out of the Oasis and Back into Life

Posted by Deborah Grauzam on

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It is funny or maybe not funny, but ironic that with a special needs child all the things you have in place and are working one minute can become things that need changed and adjusted the very next. I know the same can be said for life with typical developing children as I have two also, but the sheer work involved with finding the next right therapist, therapy or “piece of the puzzle” can make these changes for special needs children seem overwhelming.

With that little introduction in place, allow me to introduce you to a year in our life that had so many of these changes, in such a rapid fire type way that even I, when rereading my book about this year, closed the book and thought “WOW, that was one BIG year”

I know I left off my last blog with the statement that all was very well, we had a bit of an oasis. Yes, we did but then ....life stepped in. Elizabeth was quite happy with her new routine and her home school teacher at the end of the first year and with that in mind, we planned some fun things for her and the teacher to do when school resumed in the Fall. Such as trips to the museum, libraries, art classes and more. As of September, Elizabeth was also attending her old preschool for the socialization part of her needs. And we found a Kindergarten program that was associated with a school in our area and had classes three mornings a week at a local church. So the Kindergarten used state curriculums and the like but had a less stressful feel as it was in smaller classrooms in a church. Elizabeth had speech also and we, of course, continued our work with Mary for her sensory and dyspraxic issues.

It was a busy, full schedule but Elizabeth loved each part and each part was different and necessary. I think John and I felt that her current schedule was meeting all of her therapy needs as well as her need for socialization and the one on one education that was needed.

I guess I knew that, historically speaking, our oasis would not be a forever thing, but I DID think, I would be able to see the signs of a need for change and be strong enough to deal with what we needed to do for Elizabeth....but I did not and was not.

Let me explain. The problems started out so slowly. September went well but then it all started to unravel... First Elizabeth would look very uncomfortable when she went to “school” with her teacher. Which was, for those who have not read my book, upstairs in our spare bedroom. I thought perhaps she was reticent because she liked being with other children at preschool ad Kindergarten school and not by herself. This feeling of being uncomfortable turned into Elizabeth saying that she did not like her school time . While it was great she could articulate this to us, she was still unable to truly express and answer to the “W” questions. Why?, where?, when?.... So with that issue we could not truly understand what she was feeling. I could see anxiety and while she expressed a thought, we could really not get more than that from her. So we talked to the teacher a great deal. It turns out that Elizabeth had been showing some issues in the room, such as shutting down and showing some sensory defensiveness in the classroom. We talked about ways the teacher could help Elizabeth, the teachers feelings and ideas of things to do when she was showing these signs and we developed a reward system for Elizabeth to help motivate her.

Even as I type this now, I can remember feeling remotely sad at the moment of this conversation with the teacher. I was sad because it was like we were back at that moment when you, as a parent of a special needs child, realize just how challenging your child’s disorders are and that you are now facing yet another road block or challenge to your child’s success....and if I am truthful here, I really wanted to make this work. I thought of all the hard work we had done to put this schedule and places in to play and truthfully, I did not want to have to make another round of changes. I pushed away the sad feeling and replaced it with some determination to try our best to make this work. The one thing that I will share now is that ...no amount of MY determination, can change the disorders of SPD and dyspraxia. No amount of MY determination can change the fact that some things can’t be fixed, they must be changed.

If I had to turn our attention to the good parts of this year...I can share that she was enjoying her preschool time to socialize and she was fitting right in with a new groups of children at the Kindergarten program. She had her desk, supplies, a very cute classroom and a teacher who was willing to listen and work with Elizabeth’s needs. And I guess on a very superficial layer, Elizabeth also had some very cute outfits for her school days! That is one thing discovered during this year, Elizabeth loved to pick out her clothes. I would show her outfits and she would decide what she liked that day. I think through all the years of work and therapies, it did not really dawn on me that she would want to do this or that she would be interested in clothes. I was so busy getter us out the door and through a therapy, that pretty much clothes and their colors did not matter as long as her clothes matched, were clean and without an obvious flaw, we were good to go. But, I did learn quickly that Elizabeth, loved pink, purple and yellow, NEVER dark blue or green and she loved dresses way more than pants and there was one set of shoes, she simply would not wear. I believe she called them “ugly”. What a true treat it was to discover something more about my daughter and also, what a treat it was to shop with her and have her have an opinion and choice....yet another beautiful piece of Elizabeth to add to the ones we have discovered before.

So, with preschool and Kindergarten going well, I need to say that our work with Mary was continuing on the same as before. With the work stressing around the oral motor work as well as, once again working on clarity and and sentence length, thinking language and the body work. All of which are serious work. With that said, we began a new speech therapy that was to work on articulation or clarity of speech. Elizabeth went once a week and we did the follow-up at home. This therapist was so genuine and kind. I can remember her asking me all about Elizabeth and her disorders. She told me she had never worked with these disorders before but she was excited to try to help Elizabeth. This therapist proved to be worth every word.

So we now need to rejoin the homeschool story. Something our first OT had said I need to pass on now. It is was that children with SPD, need to end any and all experiences, if possible, on a good or successful note. As they will remember the last association made with the event. Meaning, if there is a struggle, a fear, a bad outcome to an event. They will forever remember that association and as such will come to that association even years after the event has occurred. I hate to say that the association of discomfort and negativity had been made by Elizabeth regarding the homeschool area. It had also been very well embedded as we tried to make the situation work. I referenced earlier that I wish I had had the true vision to recognize the problem and the strength to make changes, instead, I let time pass and tried to make this situation work. All that I succeeded in was making Elizabeth more anxious and the homeschool teacher more frustrated. It came to a point were we simply had to change. I do regret not digging a bit deeper for strength prior but I learned a lesson and made a silent promise to my daughter that if there was a feeling in my heart that something was wrong I would never ignore it again....thus far in life, I have kept that promise. This teacher and I had a long talk and as much as she helped Elizabeth and guided us initially, we both agreed it was time to move on. So we did.

We found a new tutor who was certified in special education, who was actually recommended by and a relative of our newest speech therapist. We met this new addition on a Spring day. Elizabeth was quite nervous to meet her. I could see just how strong her negative association of a teacher and the schoolroom really was. I will be so happy to say...that this new teacher...knew how to gently guide this nervous child to a calm place. As time went on the calm place became a happy place then to a fun, exciting, wonderful place. This wonderful person is still in our life only not only in the capacity of a tutor but a wonderful friend and honorary member of our family.

Our new tutor worked with Elizabeth for a month or so and then posed the next question that would bring about the final change of what has been quite the year. “ I think Elizabeth should go to traditional school next year. She is ready.” This WAS something John and I had thought would be our path but perhaps now was a good time. After all, and as our tutor thought, she was loving the children at school, able to do well with instruction and was going to be tutored in adjunct to anything taught in first grade. Well we thought about it and decided to sign the papers to have her tested. The testing was done, the IEP meeting was held, the plan was in place for which classes were mainstreamed and which were to be in the intervention room. The start date was September. Here we go on another leg of our journey.

I look back at the start of the year and then look at where we ended up and I can only say that I would have NEVER guessed that our journey would take us here but I learned more about life with our special needs child and it was called “ life and Elizabeth’s needs will be ever changing.” Our ability to adapt and change, grow and learn, fall and get back up instilled in us a belief in our own strength and in the strength of our daughter. Dare I say we ended the year in a calm way? Or perhaps best to say...the journey continues.

-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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Elizabeth Finds the Right Fit for Her

Posted by Deborah Grauzam on

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Something so unique about having a special needs child is that when most typical children are headed in one direction, you find yourself wondering if you should follow their lead, if it fits your child’s needs, or if you need to forge your own path, hope it fits your child’s needs and try to stand by your choices.

As you can see from our previous blog posts, our journey with Elizabeth has had quite the twist and turns, but we have arrived at a point in our journey that most parents get to and it is called  It Is Almost Time For Kindergarten.” Yes, as we have been so busy with Elizabeth and her disorders, time has ticked by until we have arrived at this point, this crossroad.

I can remember thinking that even at the age when most children would be happily picking out a backpack and headed to Kindergarten, we were looking at the beautiful child and thinking “Where is the next best step for her?”  We knew she would love the socialization of school, but her language was not strong enough to send her into the world and the school would be looking at her education goals based on that initial IEP test.  John and I reasoned that if we used the year to work harder on speech and language, continued our work with Mary and all we did at home, we could make great gains and we could revisit the school idea next year.

This WAS our plan, however, we found having a conversation with a mother who had a daughter in the Montessori school in our area.  Her words and feelings about the school sounded calm and encouraging.  We investigated it further and thought we should enroll Elizabeth.  Elizabeth went to see it with us and she was calmed by the feeling there, enjoyed watching the class work and seemed content.   So into the school she went.

Something to note about children with Global Dyspraxia is that they do not generally have a natural curiosity about things.  For example, they will NEVER pick up a toy and try to figure out how to dress it, move it or play with it.  You will be needing to show them the above,  repeatedly and break down those steps!   With that said, Montessori has a philosophy that the child will learn via there own drive, pace and they are encouraged to find areas to “learn and explore” on their own…hence the individual pace and calm feeling of the school.  Elizabeth’s inherent lack of curiosity due to her disorder and their inherent belief in education driven by individual curiosity did not blend well.   Truth be told, she did wonderfully there.  She sat in morning meetings, listened well, ate her lunch with little assistance, took the nice rest time they had after lunch and more.  So we were encouraged in all that was being shown by Elizabeth.  In fact, had it not been for the fact that Elizabeth liked to play/learn in only one area for a whole month, and we were kind of scared the year might wasted in terms of learning, we would have probably kept her there. But we knew we really could not let time slip by without her educational goals being met, so with heavy hearts we chose to leave the school.

As I said before our road has been full of twists and turns.  We decided that because Elizabeth needed more one on one learning, we could home-school her, all the while continuing with her speech and language therapy, her work with Mary, and for the socialization aspect we would see if we could arrange for her to attend her old preschool for a couple mornings a week.  The preschool said they would love to have her back, we found a young teacher who said she would be happy to tutor her, we turned a spare room into a school room and we then introduced Elizabeth to her new schedule.  One I will say she took to right away and did beautifully.

Something to note here is that Elizabeth has these pretty severe disorders…correct? Yet, she is one amazing child to meet and work with as many people as she has had to encounter in her few years on this earth, not to mention all the places we took her to, some that worked out, others that did not.  I venture to think that her life and challenges, changes and adjustments might just fell some, if not most, typical developing peers.   I offer this out because to this day, Elizabeth is so open to teachers, therapists and people and I cannot help but think her early years and experiences have given her this gift.

So now that we had a path, we could focus on the work we were doing with our therapies. We could do our follow up at home, Elizabeth had her social outlet and her one on one tutoring was going well.

For the therapy,  Mary had us working Elizabeth’s whole body, and core with certain exercise we could accomplish on a trapeze bar ( think bar from a playground set) attached to a beam in the basement, where she was to hang by her hands and lift and lower her legs and a scooter she could lie down on and use her arms to move it around the basement.  Mary also had us working on encouraging more thinking language from Elizabeth.  We were to read her a bit of a story and ask her questions like: “Who is the story about?” or “What do you think will happen next?”  This way she could work on comprehension and also get some good language in there as well. Truthfully, I found these therapies challenging to do with Elizabeth but seeing her try and accomplish them made me quite happy for all the hard work and efforts we put into them.

Clarity and enunciation have always been and to this day still are our challenge.  Dyspraxic children form habits so quickly…be them good or bad ones and some misarticulations come from bad habits formed as well as from the dyspraxia itself.   Mary had encouraged us to buy bubble blowers from TalkTools as well as this neat button on a string to use to work her lips and tongue more.  The button was placed between her teeth and lips and I tugged on the string and she kept her lips tight to keep the button in place.  It was hard work to do but we knew at this stage of the game it was time to try this.  Truly, I cannot imagine trying this therapy tool prior to this time in Elizabeth’s life when she was so severely affected by her SPD.  I am happy to say she did well with these new therapy changes.

When there is a success, be it big or small, it sort of fuels you to continue, to rise to the next challenge.  I can say that our Elizabeth has done that throughout her young life.

She started life as a beautiful baby and toddler, trapped by her disorders.  She is now this beautiful kindergarten aged child whose personality and abilities are ever emerging.  It is exciting to think of her future, believing she will continue to succeed…believing in her.

For a little bit we find ourselves able to rest and to take in all the good around us. A happy Elizabeth, therapies and school that fit her needs, and some much needed peace.

The journey continues….

-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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