Tagged "TalkTools"

Overcoming The Unexpected

Posted by Deborah Grauzam on

TalkTools Blog | Elizabeth - JuneLearning something from a previous experience or mistake is a common thing in life.  We all do it.  But putting into action what you learned may take more effort.  I think this is common as well.  As I left off on the last blog, we were exiting second grade and a year that proved full of lessons.

I can remember how happy I was to be in summer that year.  It was refreshing to be out of the school schedule and all the feelings that I had amassed related to the school.  Elizabeth was ready for summer, and I was officially leading the parade out of the school for a much needed chance to relax, regroup, and plan for next year.

But before we visit the school year, we have to talk about our summer.  As I said prior, Elizabeth has a summer birthday, so this year she asked us for a blow-up water slide for her present.  We had seen one in the newspaper, so we got it, put it up, and watched our sensory child have the time of her life climbing this wiggly, wet, cold monster and sliding down about 1,000 times that summer.

The only small problem we had with the slide was that she was a little too encouraging of her toddler brother in his attempts to climb the slide to have his turn.  We had to explain many times why Michael, although crying to try it, was not to be pushed up the ladder to help him get to the top.  In any event, the summer was really fun and a nice respite from the stress of school.

But we all know that all good things must come to an end. Soon August was in front of us, and with it came the awareness that school was on the horizon.  It was time to plan how to handle the third grade year.  I decided the following:

  • Do not assume that information about Elizabeth gets to everyone, do it yourself.
  • Do not assume that work is getting done for Elizabeth, visit the school once a month at least.
  • Keep a daily communication notebook and express any and all concerns on it.
  • Do not be afraid to ask for something for Elizabeth when the need presents itself.

Now I had a game plan and was quite happy to find out we had a very cooperative and kind inclusion teacher.  I communicated Elizabeth’s needs and strengths to her as well as talking to the intervention specialist prior to school starting, and we arranged meeting times.  The communication notebook was ready.  Check, check, check!

All the parts of Elizabeth’s day were going well.  The communication notebook was so helpful in keeping up with her day to day feelings and activities.  So I was enjoying the positive changes….

The thing is, when you have a child with special needs, these needs are dynamic in that they change.  And sometimes, they change quickly and without warning.  One day she came home happy and chatty, and the next day she came home quite angry and stressed.  This went on each day and she seemed to get a bit more stressed each day.  It was like she would JUST make it in the front door before she would meltdown.  Every day, the same way.   So I:

  • Checked the notebook
  • Talked to Elizabeth
  • Wrote notes to the teachers
  • Even visited the school

I was told nothing was wrong at school, so I knew that these were signs of her sensory issues resurfacing, and that she needed some calming activities or brushing to help her through the day.  This was a new twist, because she had never needed this before during a school day.  I wanted the school to brush her during the day and thought about telling them individually about our request, but then I reasoned it would be easier to talk about her needs fully at the upcoming IEP meeting.  We had an IEP meeting set up for fall to sign the new IEP.  I envisioned that I would talk about her sensory needs, make a plan to accomplish this, and then all would be well.

Yes, that is what I thought would occur.  I never thought I would be met with any resistance.  Yes, I heard it even as I wrote it. Just how naïve and trusting I was early on!

The meeting went like this:

  • I thought it was just me, the intervention specialist and OT coming to the meeting - it was the ENTIRE team.
  • I thought it would be an easy meeting - it was very hard.
  • I told my husband, “I've got this, you don’t have to come” - I was wrong.
  • I asked for the sensory diet and oral motor protocol (including brushing, quiet time, and oral motor work) - I was told  “NO”.
  • I explained why these things were needed - I was made to feel foolish and in the wrong.
  • I left with no signed IEP, some pretty bad feelings, and a total realization of how things work.
    I went home close to tears and full of frustration but really quite determined to get these things for Elizabeth.  I think I felt that if we could get the school to do the sensory diet, it would affirm that they understood the disorders Elizabeth has.  I think we realized just how important that understanding is. So John and I scheduled another IEP meeting, one he was sure to attend!   But prior to that meeting, we made sure to do our homework.
    • Our therapist, Mary, and I talked.
    • Our private OT, tutor, speech therapist and I talked.
    • We made a plan of who would be at the next meeting.
    • We contacted an advocate
    • We made a plan for our requests
    • We fought for our daughter

    I am happy to say we got the sensory diet and oral motor protocols put into her school day. But there were some casualties by the roadside for sure, such as many bad feelings and changed relationships.

    But why the fight?  Aren’t we all really on the same side? And that side being FOR the child? I offer out all these experiences, because so many people are just beginning their experiences within a school system and maybe by reading our experiences, they will gain strength in their own advocacy for their child.

    The remainder of the year went like this.  I would visit the school every three weeks to check in.  I made check off sheets for the teachers and speech therapist to use to show that both the sensory diet and oral-motor protocol were being followed.  Between the sensory diet followed at home and the one at school, Elizabeth’s system calmed down and she no longer arrived at our doorstep in the overwhelmed, angry fashion.  She was able to enjoy her school day feeling calm. The things we were asking for were what she really needed, what her system really needed to function.

    Now that we had a sensory diet in place, we hoped all would be well. Our IEP stated when she would have time in the inclusion class, but as the year went on, we noticed she was spending more and more time in the special education room and less and less time with typical children.

    For those who don’t know, Elizabeth is one of the sweetest, kindest, most gentle, and extremely social people you could ever come across. But the truth is, she does need extra support in her school day in the form of reminders, encouragement, and understanding of how she works.  So during one of monthly meetings I asked why this was.  I was told:

    • She sometimes looks overwhelmed.
    • The inclusion class is working on a project.
    • We have something we need her to do in the special ed. room.
    • The work is too much for her in the inclusion class.

    We were unhappy in this area, as we wanted Elizabeth to have the chance to be with and learn from typical developing children.  We knew that the content of the classes needed to be modified for her, but being in these classes would do many things:

    • Give Elizabeth a chance to learn how to act in a typical classroom.
    • Teach her how to engage in group projects.
    • Allow her to feel like part of the class.

    We did not pursue this point with the school this year but had plans to focus on this issue the following school year.  For those who have children in a similar situation, you may wish to be alert to the time your child actually spends in the inclusion classroom.  My hope is that what is on your child’s IEP is actually being done.

    The year wound up with a very positive occurrence, Elizabeth was voted student of the month by her classmates.  It is an award that not everyone receives, and she was the student of the month for April. I am sure when it came home, the neighbors three houses down in either direction heard my happy screams!

    So much good is coming for Elizabeth in her personal growth, talking, and social abilities.  We have always believed in her abilities, but we had to work to understand her disorders. We leave the year feeling like the school understands her disorders and even Elizabeth.  This is a good thing.

    We leave third grade and head to fourth. I will put the “to-do” list away for the summer and focus on fun, sunshine, and keeping Elizabeth from succeeding in getting her brother to the top of the waterslide.

    As ever, 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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    Interning in Advocacy

    Posted by Deborah Grauzam on

    Elizabeth's school picture | TalkTools Blog

    I left everyone last month by saying that Elizabeth was going to school!  What an accomplishment for her and her strength. Yes our little Elizabeth is in school.  Everyday of every week she is in school.  She has a great intervention teacher and a very nice inclusion teacher.  The inclusion teacher is the one who has all the typically developing children but whose room, it is determined, will be the one Elizabeth uses as homeroom.  It is in this room that they have circle time, morning meetings and all parties. Elizabeth also has an aide that she will share with four other children.  The thinking behind this was that the aide would be there for her when needed but by the number of children she was to help, it would encourage independence in Elizabeth.  All was in order…it was quite official, she was a member of our school system.

    Something that I think is amazing in this journey with Elizabeth is the number of feelings I can have in the course of a single day.  I can rejoice, worry, pray, feel relief, feel her pain, feel immense love, wipe away tears and fall on my knees to thank God for his grace.  Some feelings can take your breath away with their sheer strength and some can be simple little tugs on your heart that go away after a bit.  But one feeling I was NOT ready for was the one that accompanied the huge milestone that Elizabeth just achieved.

    I was not ready for this feeling of loss. It was not a loss in the typical sense, where you have something and then it is taken away.  In my case, I think it was the feeling of a loss at what could have been.  Here I have this wonderful child so trapped in her disorders that finding her took so much time and effort, then as we continued to work and achieve, time continued to pass.  Just as we see the true Elizabeth, the one with the bright eyes and easy laugh, she is at school age.  With a bit more work, we feel she is ready to head into the school and LIVE.   And just as I see her head into the school, I feel, so empty.  It is like I guess I thought that we would have some time to simply BE.  To have Elizabeth in a state of calm and happy at a time that would allow us to enjoy those special times that you get when your children are young and are all yours, with no real accountability.

    It hit me pretty hard that we did not get that gift.  We did not get those quiet times, those quiet mornings to sit together with no where to go or really nothing to do than just share time.  We worked and worked and so many wonderful gains were made so wouldn’t follow that I would simply be happy.  I would have thought so, but I guess it finally dawned on me that I was simply NOT going to get those times, that my time alone with her was done and that she was moving on in the world….and I felt quite cheated.  Again, the very thing we had prayed for had come to be, but it brought with it some feeling that were hard to deal with.

    Something that helped me through these feelings was seeing just how much Elizabeth loved going to school, being with other children and doing what it is that children SHOULD be doing.  The typical kid things…coloring, singing, eating in a cafeteria, recess, and so much more.  Seeing her smile and laugh about her day helped, seeing her pick her outfits (SO MUCH PINK!!!) was fun, (She even used my perfume each morning resulting in two teachers asking my what makes Elizabeth smell so good),  doing homework with her was a novelty.  These good things helped me take the focus from me and put it once again on Elizabeth.  This was where she needed to be and wanted to be. When I think of Elizabeth just a few years prior, and mentally see the child who cried all the time, whose eyes looked so afraid and who was unable to speak a word, we can respect just what a huge accomplishment this is.

    I like to think of Elizabeth as a work in progress. Because with her disorders, she will always be working on a new goal or skill.  And also because of her disorders, it is vital that those working with have an understanding of her disorders, how they affect her and how to work with her.    It was at this time that I started what I like to think of as my internship on this thing called “advocacy for your child” I had quite little experience being her advocate with educators in a school system and like in all internships there was a great deal of learning to do.

    Something that I learned that year was to listen to your heart and follow what it leads you to do for your child.  By this I mean that I learned that I know my child and her needs the best and it is up to me to advocate for her and her needs.

    Something else I learned was that communication between us at home and those working with Elizabeth at the school became critical to Elizabeth’s success.  Hearing how her day went, the good and the struggles allowed us to share thoughts and ideas to help Elizabeth.   Something that I learned and I advocate for to this day is to think of the school and family as a team.  NOT two sides that work separately but two parts that should work together for the good of the child.

    I learned all these things and more throughout this first year.  I learned to be strong.  I also learned that things in a school system do not always come easy, that attitudes and opinions can cloud good judgment that sometimes you need to be stronger than you ever thought you would have to be, that you could be so thankful to an educator for giving that little extra bit. I also, once again learned just how strong and amazing Elizabeth is.

    Yes, she went to school!  A simple declarative sentence, but really is so much more.

    A beautiful child, happy at school, happy with her world, who a few short years ago could not have managed to put shoes on or leave my side, heads down the hall each morning to class, carrying her lunchbox and wearing her signature pink color and the perfume we have shared for years.   She is a little young lady.  We are proud.  Simply we love her… I can’t help but wonder what the next step of our journey will bring……

    -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


    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


    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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    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…..



    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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