A reminder to live in the moment (something I need to remember daily!)
Destinations February 27, 2013
Feature on PediaStaff February 25, 2013
Tags: apraxia, CAS, mommycircus, Pediastaff
Many of you read the recent post featuring Gretchen Hines and her poignant story of being Mom to a child with apraxia. Gretchen’s story of a mother’s love, sadness, frustration and eventual success touched many hearts (including mine) and inspired us as parents, therapists, educators and advocates. I am pleased to report that Gretchen’s story is featured in PediaStaff’s Parent’s Corner this week! Special thanks to social media extraordinaire, Heidi Kay, for picking up the story and spreading the word.
Gretchen’s post on PediaStaff: (click on image)
Thanks for reading! Lisa, LiveSpeakLove
Judge Not…A Mother’s Journey February 20, 2013
Tags: apraxia, bullying, CAS, mom, mommycircus
SLPs, educators, parents, and anyone needing a bit of inspiration in life today — please join me in welcoming featured contributor, Gretchen Hines. Gretchen graciously agreed to share this very personal, heartfelt account of her journey as a mother of a child with apraxia. Perhaps you are on a similar journey with your own loved one, or perhaps you are working to make a difference in the lives of families like Gretchen’s. Whatever your story, I hope that you will find inspiration in this mother’s words. I know I did. ~Lisa, LiveSpeakLove
The following post originally appeared on Gretchen Hines’ personal blog, MommyCircus. Head on over to her site and let her know how you liked her story!
It has been a few months since I have posted, but September came, school and sports started and my time became sparse. But, I’m back! Hoping to catch up on and continue to post about the happy happenings of our large household.
What got me started tonight has been weighing heavy on my mind for a few weeks and I thought it best to make a post, in hopes that it may change, if only one persons perspective on what I am about to approach.
Sixteen years ago this past October, we were blessed with our first born son, Tyler. As any first time parent would do we carefully marked milestones…first smile, sitting, crawling, walking, first word… Tyler made all of those milestones mostly right on time. right around a year or so old he spoke “mama” and “dada” for the first time. His brother Ben was born when he was 13 months old and Tyler called him “kitty” because of the his large amount of brown hair. But, his words were few and far between. When he turned two I found out I was expecting a third baby, and right about that time fourteen years ago, our beautiful little red haired 2 year old boy stopped speaking at all. Instead, he mumbled as though he had a mouth full of food. We took him to the pediatrician, who referred us to the local children’s hospital for evaluation. We were told initially that he might be autistic. I was devastated. I felt guilty that I was pregnant again while my precious little boy would need so much help. I had no idea what the future would hold for him… We went to lots of appointments and testing and finally ended up in the speech therapy department at CHKD. They explained to us that he was not autistic, however he displayed the high intelligence that a lot of autistic children display. What he had was a condition they termed apraxia. The connection between his brain and his tongue had a malfunction within it, thus making it very difficult for him to form words. The diagnosis they gave stated that they were ” cautiously optimistic” that he would ever be able to speak.
We quickly began daily speech therapy and were told it would be best if we learn sign language to communicate with him. Our precious two year old boy learned to sign to us to let us know what he needed. I desperately wanted to hear my son speak as I watched his tiny hands sign things to me. I became his mouth. I spoke for him everywhere we went. I watched in utter sadness as he would try to play with other children, only to have them walk away because he could not speak to them . On the playground kids would ask why he wouldn’t talk to them. Children wanted to know what was “wrong” with him. So, I kept him to myself. I kept him away from other children. He was always a curious little fellow and dearly loved to scavenge around the yard for worms and lizards. He loved exploring, and we would often explore the woods behind our house, just me and him and his brothers. His younger brother Ben, who at this point was 2 years old and speaking enough for both of them was quick to understand that his older brother could not speak. This, was not going to work for him. Determined to have his brother speak to him, Ben would talk at him, often forcefully “talk to me” he would say. And he would talk and explain to Tyler all day long. To this day, and forever, I owe a debt of gratitude to my little son Ben for his part in helping Tyler speak. He was persistent and forceful and often arrogant, and I believe that he still feels a bit of responsibility towards Tyler that he will never understand.
Many, many months of speech therapy later and one very persistent little brother…. my first born son at the age of 4, began to speak in sentences. And every word he has spoken since then has been a miracle. At this point, our therapy benefits had long since expired and it seemed as though our son had gone about as far as he could with speech therapy. His therapist agreed that he had progressed far beyond their expectations and it was probably best to discontinue his therapy. He did still have some difficulty with certain sounds, but we were satisfied that he could speak, and a slight speech impediment would not be the end of the world. At this point we decided to enroll him in pre school to help him learn to socialize with other children. I was scared to death. I wouldnt be able to be there if he needed help or if someone didn’t understand him. But, in true Tyler fashion, he was so excited to go to school. He went the first day and loved it, couldn’t wait to go back. He had such a good time at school and really seemed to be interacting well and making friends. And then came March of that school year. March is when the school holds parent conferences to discuss your child’s progress and determine a plan for the following year. My husband and I went for our conference on a March afternoon that I will never forget… A very misguided pre school teacher sat us down, and in not so many words told us that our son was “dumb” because she couldn’t understand him. She told us that he would never be able to succeed in a regular classroom and that she really didn’t feel that he should go on to kindergarten. Once again, that feeling of devastation set in. I cried the rest of the day and declared that I was removing him from that school. However, my level headed husband explained that it would not be fair to our son to take his school away from him because he loved it so much. That we would not let that teacher get the best of us. We would push forward, knowing that our son WAS capable of anything.
We enrolled him in private kindergarten the following year, and he thrived. His teacher was kind and understood him. She took the time to know him and she was able to see that beyond his speech, he was a very special, smart little boy. Feeling great about his year in kindergarten, we decided to enroll him in public school for first grade. Again, I was scared to death, but he was so excited. And, once agin in true Tyler fashion, he approached each day with such enthusiasm. I felt really good about our decision to put him in public school. And then, once again, a very misguided teacher decided that since she couldn’t understand him all of the time that he needed to be placed in special reading groups. But, not only could he read, he could read chapter books! I quickly had this situation remedied, however I had to agree to place him in speech therapy through the school so that she could better understand him. Come second grade, a year into public school speech therapy, little progress in improving his “horrible” speech impediment, he is placed into a second grade class for students with special needs. Once again dismayed at the treatment of my son by the public school, I am told that he was placed in this class under the recommendation of his first grade teacher. Determined to push forward, we kept him in the class, and actually found out that he had one of the most wonderful teachers we have had to date. She was kind and understanding, and agreed that he did not belong in that class. She took him under her wing and truly bonded with him. She let him speak in front of the class and give directions and be in charge. It was a wonderful year for him. He ended that year with so much confidence.We also found out this year that Tyler has a beautiful ability to look past others handicaps and differences and see that there is something good in everyone. He would tell me about the little girl in a wheelchair who was his friend and he never once mentioned that she was in a wheelchair. He went on to third grade and was placed in a high level third grade class. Again, he had a wonderful teacher, who saw his potential. He thrived that year and was actually placed in the gifted program. Fourth grade came, and while he again had a very kind teacher, we found out that year that this is the age that children become cruel. Suddenly Tyler was the brunt of a lot of jokes because of the way that he spoke. He would tell kids that he was from another country, and that is why he spoke that way. It was soon found out that this was not the case and he was criticized for everything from his speech to his red hair. But, as I had found out two years previous, Tyler has an extremely kind heart. He never spoke ill of any of the children who teased him, he would tell me that they were his friends.
This ridiculing continued through fifth grade. My worst fear realized, and I could not go to school and fix it for him. I had to stand back and sob. Which I did everyday that year. It broke my heart to watch my precious, beautiful son ridiculed, laughed at, singled out. Why, because he was different. He did not speak the same as everyone else. This year I pulled him out of speech therapy at school as this was a point of some of the ridiculing. Progress had not been made as the school system had hoped. But, I was happy with him as he was. My hands were tied. I tried to fight for him from afar, but this could only go so far. I asked him if he wanted to be home schooled, but he always told me no. Despite the treatment he received at school, he still loved it, and wanted to be a part of it. The bullying continued into middle school, and I watched as my once happy go lucky little boy became quiet, angry. He had had enough, but wasn’t willing to give up. He continued on alone at school.He had some good, understanding teachers, but we were still met with those that just could not get past his speech. He made good grades and was happy at home. He would not give up. I think that he knew somewhere, somehow there was a light at the end of the tunnel… That light finally came the end of his eighth grade year.
In the spring of eighth grade we had to make his schedule for high school. I was once again scared to death. How was he going to make it in high school? He came to me with his scheduling paper for me to sign so that he could participate in ROTC. I was very skeptical about this decision. How on earth with the problems he has had with communication would he make it in ROTC. I agreed to it, and this… became the light…. He entered ninth grade alone, and I think afraid. But, he was met with some very understanding teachers. Teachers that saw past his speech, in fact I said something to one of his teachers, and she replied ” I didn’t know he had a speech problem”. But, by far, his involvement in the ROTC program was a God send. That year, he attended boot camp in the fall. He was awarded numerous merits and by the end of his ninth grade year he was ranked as a Petty Officer 1st Class in his unit. Something very few freshmen had done.He had new friends. He was finally my son again. For the first time in several years he was smiling again. Those cruel children from the past seemed to have dissipated amongst the rest of the school. He was finally able to be himself again, though I believe that through those past years we had lost a bit of who he once was. The outgoing little boy who once would stop and dance for no good reason, or sing out loud was gone, taken by cruelty and misguided expectations.
Last week my little boy, the one who would never succeed was named as Chief Officer in his ROTC unit. His commanding officer asked him which unit he would like to be in charge of next year. Why, because of his ability to communicate with other cadets. Because of his ability to lead and be a leader. This evening that same little boy, my precious red haired boy will walk across the stage at Gloucester High School as he is inducted into the National Honor Society. Succeed… he did! There is a small part of me deep in my heart that wishes those teachers who labeled him “dumb” because of his speech would all be sitting in that auditorium tonight. Would they know my son? Succeed he did… and he will. He will be great things!
So, the point I am trying to make here is this… Please don’t judge. Never label child. All of our children are beautiful blessings from God! They all have a beautiful purpose, whether they can speak or not, whether they are in a wheelchair, whether they look the way that society would have them look. They are all important and great, and can do great things if we just allow them to do so. If you see a child who needs a little extra help… see them, hear them, help them, understand them… And to all of those teachers and friends who did understand… Thank You!
About Gretchen: I am Mom to nine beautiful children. I am a nurse by trade, and worked as a critical care nurse for a few years before becoming a home health nurse. Home health nursing is where I met my best friend and soul mate who is a home health physical therapist. We were married a year after our first date and shortly thereafter began having children… lots of them. I quit working as a nurse after our third child was born to become a full time Mom and to focus my attention on the needs of our first child. I thoroughly enjoy homeschooling my younger children, and dedicate a large portion of my time to their education. In my spare time these days I am a photographer and writer. Being a mom to nine children has been my biggest challenge and my most amazing blessing. At times it can be an uphill battle…but, at the end of the day we are blessed beyond belief and I wouldn’t trade this life for anything. Gretchen Hines, MommyCircus