I met Tammy, Collin’s mom, about three years ago at the Waisman Center. I was presenting my photography of special needs kiddos and sharing the Stories of Autism project with other exhibitors. She was in attendance to learn from experts in the field of autism who were giving seminars on technology and IEP resources. I remember very clearly her approaching me and stating she wanted to work on a project with me to share her son’s story – using images that I would take of her son. Tammy’s goal then, and ever since, is to help others. She is someone that has a truly has a passion deep inside for making a difference. She gives generously, without question, and works tirelessly to reach whatever goal she has in her sight. I read the story below and know without a doubt that Tammy is the reason behind why this child is now smiling. It takes a village, yes, but it also takes a very devoted and driven Mama Bear. And that’s what she is for Collin.
Life had begun so typically for my son Collin. Growing like a weed, meeting developmental milestones, walking, laughing, smiling and speaking his first words. From the beginning we knew he was very smart. Learning the alphabet, identifying letters and pictures just over age one and reading his first Dr. Seuss book when he was 20 months old. At age 3 he was drawing detailed maps and was fascinated with road signs. We nicknamed him “GPS” because he could navigate each trip with detailed directions even as far as a few hours away.
However, not everything was perfect. Family functions, social outings always presented unexpected challenges. He was larger than most children his own age and looking back it can best be described as a bull in a china shop. He never quite fit in. Working full time, childcare was a necessity and a never-ending challenge. We never found an exact fit for him and there were always challenges. We were relieved at age four he could start school and begin his educational journey. Seven years later, I look back and can actually laugh at the naive hopeful parents we were.
The school years began a never-ending stream of notes home, phone calls and reports of disruption. He was exceptionally bright, intelligent and mature for his age. However, he never seemed to mesh with peers his own age. He was happiest when interacting with older peers or adults.When Collin was half way through first grade I was frustrated and felt we were missing something. There were too many years of school ahead of him to settle for what was barely working. I requested that the school complete testing. We had a meeting to hear the results and sat shell shocked as the school explained that our son was talented and gifted but he was also autistic. Feeling completely overwhelmed we were led by a group of nine people through our first IEP. Life as we knew it would be changed forever.
I remember feeling relieved that there was an explanation for what never quite made sense to us. I started reading books, and trying to educate myself and find techniques to help my son so he could be successful in all areas of his life. Life at home was fine and things were being managed at school. I relied on the school fully to advise me on what was best for Collin at school. They were the experts with degrees in special education, autism and teaching. Little did I know! Why I thought a team of experts could see inside my son and know what he needed at school to be successful and to fully trust they would always make the best decisions for him is still a memory that haunts me.
That same year, at age six, my son’s body was showing signs of puberty. Knowing this was not normal we consulted with a pediatric endocrinologist. Numerous tests were conducted and it was determined that Collin had Precocious Puberty. With medication it could be slowed down and would be monitored until he was eleven. Life continued in a manageable way until Collin was in third grade and, although not by standards for the typical eight year old, he was having the best school year to date. He was in the classroom with limited support from aids and the special education teacher. He was receiving OT, speech, and he also participated in an advanced reading class for the talented and gifted. His reading and math skills were in the fourth and fifth grade level.
In January he was acting out in the classroom. Unable to sit still, was disruptive, refusing to do work. It was perceived as a behavior problem. He was choosing to be defiant and could control his actions if he wanted to. It was addressed with loss of privileges (being kicked out of the talented & gifted program) sent to the office, meetings with the principal, serving detention. There were days that he would sit in the office for hours. He became more aggressive and would tip over tables, chairs, hit others and at one point held a scissors point to the back of an aide. The police were called. Aggression at school would result in loss of privileges at home. He would only tell me school was torture and he could not be forced to do work. By mid-March he was miserable, angry, depressed, and was threatening self-harm and running away.
My once happy, loving child was someone I did not recognize. I was not willing to let it continue and risk him hurting himself or someone else. I felt I knew him best and when he started to act out he was trying to tell us something. He was not choosing to be naughty, he was in distress. I felt sickened that my son had been trying to tell me something was wrong and I was not understanding or hearing his message. I heard his pleas begging me not to take him to school, I heard him tell me he was feeling tortured and what did I do? I continued to make him go and supported his punishments. I am the one person in this life that he trusts and relies on and I had failed him. As a parent I cannot think of a more devastating feeling. That is a hurt that will stay with me for a lifetime
I did my best to work with the school to try and ease him back. Nothing worked. Even one on one instruction in a private room was unsuccessful. He had shut down and was not willing to come out of the safe place he created within himself. Even at home he was someone I no longer recognized. The school year ended without him and he spent the summer pretty isolated and resisted leaving the house even for fun things like swimming which he would do every day if allowed in past summers. He was truly not the same kid. The school year was approaching and there was now a new principal and a new special education teacher. I had several meeting over the summer to bring them up to date and try and create a realistic plan to continue on with his education. I talked until I was blue in the face. His IEP stated he was to be in a regular classroom and that is where he would be.
He had barely recovered over the summer and I felt it was aggressively optimistic that the way the last school year ended he could just go right back into the classroom. They were confident that they could provide my son the support he would need to be successful. I was encouraged to give them a chance and once school started I could always request a new IEP. I did not agree. However I wanted to start my relationship off on the right foot with all the new people at the school.
I slowly started to prepare him weeks in advance with meet and greets and short visits to the school. For weeks we prepared for the first day of 4th grade. Collin had a great attitude and seemed excited to be going back to school. After ½ a day he refused to participate in his class. He took a book and sat in the corner alone. His many requests to go to the special education room were denied. By the end of the day he ran out the door. He was so distraught he was almost hit by a car. He got into the car and started bawling. When he arrived home he went into my bedroom hid under the blanket, screaming and rocking back and forth. After one full day he had what I can best describe as a breakdown. A complete relapse from the spring only this time it was magnified by ten.
I contacted the school and reported the mental state of my son. They said after one day I had not given it a chance. If I did not bring him back to school I would be charged with truancy. I did not take him back. My son’s days were filled with anxiety and aggression to a point that I could barely control. There were several near misses of personal injury to my husband and myself. I received heartbreaking advice to consider institutionalizing him. “Thanks, but over my dead body.” is what I thought.
I searched high and low for answers from the medical profession. The answers were there I just had to find them. The medical diagnosis was autism spectrum disorder and precocious puberty. A very rare combination. The doctor referred to this as “The Perfect Storm.” He explained there have not been any specific studies on autism and the effects of early puberty. This was not new news for us, however; it provided the answers how the combination brought us to this place. We needed a plan to move forward and it was going to take allot of time.
The next year was one of the most challenging years for my family. Collin missed an entire school year and was described as a school phobic. We couldn’t even say the word school in our house. I knew the regular school environment wasn’t going to work. I kept searching. I would never give up. He deserved a happy life. He deserved to live his days being a kid laughing and having fun. I cried a million tears and kept searching for a way to find my son’s smile. Then I found Common Threads Resource Center in McFarland. On their website it says they focus on unique behavior, communicative, emotional, sensory, and social challenges.
I took a tour and I describe it as a match made in heaven. I saw first-hand how they could see inside my son. They saw his gifts, talents and found a way to slowly bring him out again. They focused completely on my son’s learning style and adapted their teaching style.
In just a few short months I saw him laughing, smiling and making friends. After the first year in this environment he was a completely different kid! He would come home proud, had an increased self-esteem and was at or above grade level. In a few short months he will hit his two-year anniversary at Common Threads. When the bottom fell out of our world Collin was a little boy. Now, almost 12 he is growing up to be a wonderful, caring, genuine young man. He has a few close friends he enjoys spending time with. He has a passion for video games and computer. For years his passion was Nintendo games, specifically Mario games. Over the last year he has become an avid Mine Craft player and all around expert of the game.
Leaving the house other than school or routine appointments is still a huge challenge for him as well as peer groups or social situations. With structure, monitoring he has been able to build a group of online friends that share his passion of the game.
Through this experience he has encountered many social situations from the safety of our home. Behind the computer screen and through voice chat he is continually learning many hard lessons of friendships. The good, the bad, and the hurt that comes through the normal course of kids playing. I forever have to be on my toes to keep up with his advanced skills on the computer to keep it under control and safe. However, it is all worth it. This has helped increase his confidence and he is now participating in a few group sessions at school. It is slow but steady progress. I look back and am amazed at how far he has come. I think the biggest lesson I have learned through this process thus far is I truly know my son best. If it doesn’t feel right to me it is not going to work for him. I was always searching for the expert that could explain it to me and have it make sense. I was the expert all along. I am confident my son will continue to thrive and live a full life. I have learned first-hand parenting is not for wimps. I will forever go with my gut and continue the fight every day to make sure my son never loses his smile again.
-Tammy, Mother of Collin
And here is the mother-son team at last year’s picnic for the Stories of Autism families. This year, we’re expecting over 150 people and are excited to connect families! You may donate here if you’d like. Thank you for your support!