“I think she has Sensory Integration Dysfunction” a disorder that is now known as Sensory Processing Disorder or SPD…those are the words from a dear and albeit slightly courageous friend so many years ago.
As she was saying those words I was thinking “What is she talking about?”, I am a nurse and I have never heard of that disorder ever!” But like so many things about our second daughter those words made us think and think.
I can remember going to the computer with my husband and reading about the disorder and going down the signs of the disorder. We looked at each other and for a moment and were kind of stunned…everything she did was on this chart.
Now it was starting to make sense, the crying all the time, the fear in her eyes, her inability to touch things without crying, her stiffness when she was screaming…..we read more….we read how children with SPD have dyspraxia…now that was starting to make sense too. Why she had a hard time reaching developmental milestones like sitting up or walking and why she fell over the smallest of cracks in the sidewalk. It explained why she did not grab at things or hold a crayon, and why she was not attempting to talk.
There was not much available to us on the internet at this time, think 1999, but what we did have in front of us scared us. It was like the information on the screen was taken after spending a day with our child.
Now we needed to find out what to do to get her help.
“Well no, she does not let me out of her sight. She does not like to touch things. She hates it when I put her in the tub.” Well, I thought she would just learn to do it on her own., “No, I had never heard of this disorder before, I just know she cries everyday over everything.” I can’t be out of her line of vision ever. She hates the tub or feel of the grass. Oh, thank you so much, we will definitely be here on Wednesday. Yes, I will try to relax, yes, I do believe you can help her.” These quotes come from my first conversation with our very first occupational therapist. We had this conversation over the continuous screaming by Elizabeth. We were alone in the therapy room during this initial evaluation at the time and I can still see Elizabeth sitting near me on a mat, near a therapy ball just screaming.
We were quite fortunate to have found this OT, who had no doubts that what Elizabeth had was sensory issues and dyspraxia. In fact, she told me later that Elizabeth’s SPD was the most severe case she had ever worked with. We worked with Maureen for years and Elizabeth made wonderful gains, a year into our journey with Maureen we met Mary. Really, the only thing I can say about Mary is, amazing…. Mary has guided our therapy since Elizabeth has been two and a half years old. So with Mary, Maureen and two speech therapists, Elizabeth began emerging from these disorders that had her trapped in fear and the inability to do things for herself. The gains were wonderful to see, and the child that showed herself was happy, and had the best smile in town.
I can remember feeling like the therapies were working, the brushing protocol was calming her system and we were seeing great things but I can remember saying to mom one day “I wonder where we would be if Elizabeth only had dyspraxia, or maybe have only the sensory issues or if we could help her understand what we are explaining (she also has an auditory processing disorder), what if she could talk throughout all the therapies, how great would that be?” I think what I was saying at the time was maybe with only one disorder or maybe having language and one disorder, we would be able to help Elizabeth reach that point in life where SHE would want to try things on her own, to show an interest in something AND explore it on her own. To enjoy life… I think I better explain these feelings in an excerpt from my book.
So we had ourselves quite a problem. Elizabeth would have this processing disorder to deal with, along with her other two problems. This auditory process affects the understanding of environmental sounds and voice and speech sounds; the understanding of connected words in language; the understanding of social language structures; and the use of words, or pragmatics, and reading. So sometimes the words we say are heard in a different order, or they may be garbled in their ears. Or they may hear the words, but then be unable to give the appropriate verbal or motor response. So for her, if we asked her to do something, anxiety would kick in right away. Then she would not want to touch anything new or attempt anything new. This was the sensory part. And finally, the dyspraxia would make the motor part of the request hard for her. Can you imagine fighting all of these variables each day, all day? I feel sorry for Elizabeth. She really is the hardest working child I know. I will say that asking anything new of her would be very, very difficult and so, so tiring.
I remember so many times when I would make a simple
request for her to do something, and I would see her
anxiety start. Then I would see her reach for the item, get close to it, pull away, try again, almost touch it and then, once she had it, her muscles would be the next problem to deal with. Then the tears would start, and then the anxiety would escalate from there and sometimes, after repeated urgings, she would just stop all activity and simply look at the table and shut down. It was hard to want to teach something so badly and very seldom being able to do it calmly and peacefully…
How I wanted there to be a way to reach her that helped her WANT to do things, to WANT to try things. I WANTED her to WANT to be part of parties, events or just life. To somehow lose that deep, deep fear, to be able to process the information we were telling her so she could understand and not be afraid. To be able to TRY to do something and then TRY again…we wanted her to enjoy life.
“I have something I want you to consider using for Elizabeth, Michele. It is called The Listening Program®. It is music but it is special. I have seen some great things happen with other children I work with that are using it” Mary offered this out to us. Like most things, John and I thought it through for a while before trying it…but we did in July of 2002.
Mary managed the music schedule for us. 15 minutes a day was the time she kept the music on. We were to keep her up to date with any and all changes in Elizabeth. Even the littlest ones were important to note, be they changes in mood, anxiety level, willingness to try new things, ability to process requests or commands, language or even sleep patterns. Since each disc (then) or album now (iPod) is formulated differently and intended to achieve different things within the brain, it was important for Mary to know how things were going for us each week. We used the music each morning before our regular therapies.
The changes came. Some in the form of things you could see her doing and some in the form of things that she was no longer doing. Some of the early changes were:
She played on the playground on one of our vacations…and she was happy. This was huge because on our first vacation, she cried and hid as her sister played.
She could follow a story I read to her…and laughed at the right parts! This allowed us to have story times at home with her sister.
She was able to tolerate her therapies better….no crying! I could actually exit the therapy room and sit with the other parents. I could know she was ok.
She wanted her sister to hug her…just a gentle one, not a deep input one that hurt. And this friends meant the world to us but more so to her sister who was waiting for several years to find her friend called Elizabeth.
Those successes were like little gifts for us all to see. They were giving us the thing we wanted most for our daughter and that is for her to be part of this thing called life. To have a chance to play, laugh and succeed.
“John, come see this.” We were at the pool that first summer of the music, well the baby pool part of the pool, but Elizabeth was IN the pool…by HERSELF….unheard of for starters, remember she hated the tub but she was DUNKING her head in the water! Kind of standing up and dipping her hair in and flipping her head back. She would look over at me and smile. She looked like one of the Munsters with her hair slicked back. I was so so happy. Over and over she did this. She was PLAYING, she was HAPPY. She was given the gift of being a child.
That was our initial summer with The Listening Program®. That was our beginning…
My name is Michele Gianetti and I am a mom to three wonderful children, they are my gifts from God. 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 every day of her life since she was one year old. My book is available at Amazon.com, Barnes and Noble.com and my website. Please visit my website to read more about her life: www.michelegianetti.com