Seeing the Trees in the Forest: Elizabeth Grows Beyond Expectations

Posted by Deborah Grauzam on

20140910_085135

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.

Read more →

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.

Read more →

2 Years Old

Posted by Deborah Grauzam on

As a parent, there is one side of your brain that knows the truth in a situation and there is the other half that can rationalize and adjust reality to fit the need or situation.  We all know as parents that wonderful tug-of-war on the brain that we have all felt.  Like when your child decides there are monsters under their bed.   The one side of your brain says “Ok, we can deal with this tonight.” “We’ll just show her there aren’t any under there, then we will get her all tucked in and she’ll be sleeping and calm.”  While the other side of your brain says “ Oh oh No Way”  “Boy!  You are in for a new round of sleepless nights!” and “There is no way this one is going to be over quickly”

Some people like the truth and to deal with things head on while some people like a bit of rationalization or denial.  I always thought I was the kind of person who liked the truth.  It seemed to me so much easier to simply face what really was and to deal with it.  But upon the birth of Elizabeth, I found out differently. I found I wanted the reality side of my brain to be silent and let the other side take over….I learned just how strong denial can be…

Our beautiful Elizabeth came home from the hospital and simply, cried.

I could not leave her line of vision or put her down of she would cry…

We could not put her in an infant seat or she would cry…

We could not get her to sleep easily or she would cry…

We could not change her or bathe her or put a coat on her or she would cry…

And it was in her eyes that we could see the most telling of signs because her eyes actually seemed afraid.  How odd that an infant would look afraid??  We would later find out that those signs and more fit into the diagnosis of Sensory Processing Disorder or SPD 

She had no natural curiosity and did not reach for or grab at things.  She had much difficulty sitting up and rolling over. Again we would later find signs and more fall into the diagnosis of Dyspraxia.

But for the first two years, denial was kind enough to help us explain away many things.  “She is tired”, or “She is just waking up.” Or even “ She just likes to be held.”  Denial helped us get through the early days…then the weeks then the months of her life.  But then even the biggest dose of denial could not be the salve on our reality anymore.

It happened one day in the summer when Elizabeth was about two years old.  She was crying so hard as we were trying to get the baby pool filled.  It was a great summer day but she would not stop crying.  She would not sit on the grass to wait…she screamed.  She would not sit on the ground…she screamed.  She would not go in the pool…she screamed.  But sadly and quite tellingly her older sister was floating away in the pool.  Emily was enjoying the day and the pool, while Elizabeth was unable to do this.  She would literally not stop screaming.  I, of course, thought she was tired, so I put her in her room.  I went in a few minutes later to see if she was sleeping but she was not.  No, she was sitting in her crib…just sitting and staring, and oddly content to do so.   It was then that I realized something was so wrong with Elizabeth that she would prefer to be in the dark, by herself then in the “our world”.  It was at this moment, by her crib that denial went away.  It simply could not cover, change or make it better anymore.

Denial left that day and as I looked at Elizabeth I saw her so clearly and I was quite afraid.  Denial helped us cope day to day and allowed us to excuse her lack of words as her being a child who is just going to talk late. Denial allowed us to take her small attempts at sounds as “short words”. Her “words” were usually half said, so instead of “Dad” we would hear “DA”… There were so few words attempted and definitely no real attempts on her part to make two word sentences We would say “ Oh, she was trying to say____” when in truth what was said was no where near true words.  At least any words that anyone could understand.  With denial gone, we were sad to admit that at the age of two, Elizabeth was not speaking any words at all.  We would later know her global dyspraxia affected her speech.

We had her checked by an Ear, Nose and Throat (ENT) specialist to see if perhaps something was wrong with her hearing.  The doctor said she had fluid in her ears and prescribed an antibiotic.  We then began a time where we would do monthly checks with the ENT to monitor this fluid with the hope that she would get tubes.

We then found a speech therapist who specialized in whole language. Meaning, conversational speech.    She was lovely, kind and so willing to take on a beautiful little child who would cry if touched or moved out of mom’s arms length. And she worked out of her nice, quiet home.  We could not take Elizabeth to a speech and language center as Elizabeth could not handle to sensory input from a busier place.

Kathy would reward any utterance from Elizabeth.  She figured out the M&M’s were a favorite of Elizabeth’s.  So Kathy would work with Elizabeth, who would sit on my lap or legs or probably my feet if that was all she could get.  Kathy would hold up an M&M and ask Elizabeth to say a sound.  And any sound would get a reward.  Kathy told me later that getting Elizabeth to make a voluntary utterance and reward it was the first step in getting some real sounds made.  I did not know anything yet about speech and I wanted to do ANYTHING that was asked of me to help Elizabeth

I offer out now to those starting any speech program, to please know that the successes may be small and it is okay to rejoice in ANY success.  I did.  And also know that the process is a long one.  Initially I thought, “ Okay, let’s get in here, get some classes done and Elizabeth will be talking in no time”  But the truth is, it takes a long while, a great deal of work in the therapy setting and an even greater deal of follow-up at home.

We would go to Kathy’s once a week and I would work with her at home the other days. We went through many bags of those chocolate treats…  But the sounds started to come and then the words….out first success.

Two years into this journey….denial has gone, reality has set in, but with it we  see a glimmer of a hope in the picture.  The hope has a name and it is called words.

My name is Michele Gianetti and I am a mom to three wonderful children, gifts from God is what we call them.  But our second child Elizabeth is the one who changed our world the most.  She has special needs…specifically Sensory Processing Disorder (SPD) and dyspraxia.  Our family has been on quite the journey since her birth in 1997.  She has made amazing gains in life, I wanted to share our story, advice and thoughts and help others so I wrote a book about her life titled I Believe In You: A Mother and Daughter’s Special Journey. The book’s title are the very words I have said to her everyday of her life since she was one year old.  Please visit my website to read more about her life: www.michelegianetti.com  I am excited and thankful to be able to write a blog each month for TalkTools.  I hope you like them.

Read more →

I Believe in You: Elizabeth Introduction

Posted by Deborah Grauzam on

My name is Michele Gianetti and I am a mom to three wonderful children, gifts from God is what we call them.  But our second child Elizabeth is the one who changed our world the most.  She has special needs…specifically Sensory Processing Disorder (SPD) and dyspraxia.  Our family has been on quite the journey since her birth in 1997.  She has made amazing gains in life, I wanted to share our story, advice and thoughts and help others so I wrote a book about her life titled: I Believe In You: A Mother and Daughter’s Special Journey. The book’s title are the very words I have said to her everyday of her life since she was one year old.  Please visit my website to read more about her life: www.michelegianetti.com  I am excited and thankful to be able to write a blog each month for TalkTools.  I hope you like them.

So many times we plan out our lives, we think we will do this on Thursday, and that on Saturday.  We think into the future, planning our vacation way ahead of time to make sure we get good ticket and hotel prices. We plan with the hope of being able to control our lives or at least some part of them.  But sometimes in life you learn that no matter how hard you plan or schedule or work, you may find yourself somewhere you never wanted to be and facing obstacles you never planned to face.  Even wishing for the things you never thought you wanted and realizing that some things you thought were important are simply not.

Those feelings are not new to me, as we have been on our journey with our daughter and  her special needs since birth 16 years ago.  Her path in life was not one we planned for, prepared for or thought we would ever be on.  But it has brought us many gifts, those you cannot wrap in a box, it made us stronger, better and has changed us completely.

My second daughter’s name is Elizabeth, she is beautiful, loving, funny, complex, caring, kind.  She has a great laugh, a great smile and gives one of the best hugs you can find anywhere.  Those things I just mentioned are ones we treasure more than the biggest gift in a box.  You see Elizabeth was born with Sensory Processing Disorder or SPD and dyspraxia.  Both disorders showed themselves shortly after birth and have affected her life each and everyday.

Elizabeth

SPD is a disorder that affects how her nervous system takes in sensory information and turns it into the appropriate motor response.  All sensations felt wrong or offensive to her and as a result she avoided them.  She did not like the feel of shoes or grass, she did not like baths or the bright lights in a store, food had to be a certain texture, she refused food that was not thick enough and on and on. Occupational therapy has become a mainstay in her life.

Dyspraxia is a motor planning disorder that affects one’s ability to plan the steps needed to perform a task and/or the ability to perform the sequence of steps necessary to complete the task.  It can affect thinking, and processing of information as well.  These motor skills that can be affected include: gross motor skills like running and jumping.  Fine motor skills like writing or cutting and oral motor skills like swallowing and talking.  Elizabeth’s dyspraxia is global meaning it affects all of these areas.  Her dyspraxia made it hard for her to swallow…she spit up an ounce at least during each feeding, to chew, to move her lips and tongue and to talk. Speech therapy, and the use of equipment found at Talktools helped us to hear her first real words at five years old.

So much to tell, so much to share….I hope you will enjoy reading our journey in the blogs each month.

June 29th at 12:55 p.m.  Into this world was born our daughter Elizabeth.  With her first cry…our journey begins...

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