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.