By: Talhia Remy
On one cold wintery day in 2006 my world changed as my first child Preston was born. From the moment he came out of my body he was a piece of my heart. I remember being in the labor and delivery room and I saw the doctor lay him down. I said something out loud and I remember distinctively seeing my son turn his head toward my voice. I looked at him with glee and anticipation. “Can I be a mother of this child who is the spitting image of my brother?” My life changed completely. As I progressed in motherhood, my love grew more each and every day. His first steps that were early and his first words took us by surprise. My ten month old loved calling me by my name. My whole name! It was the funniest thing to me. He was such a loving and happy baby. He was full of smiles and joy.
I was very pregnant and uncomfortable in the summer of 2007 with a rambunctious toddler. One night in August I was feeling extremely uncomfortable and I could barely sit. I remember Preston would run up to me and hold my hand. “Mommy Hurt” in clear baby jargon. I had a feeling I would be delivering earlier than expected. I squeezed Preston and I left for the hospital for 4 days. I would have my second child Sidney in 2007 and I would fall in love all over again. I didn’t see Preston when I delivered for I feared the germs in the hospital. When I got home with his brother I sensed a change in him. He was almost angry with me. He wasn’t happy to see me and he kept looking away. Family and friends reminded me that even babies get jealous. I was very worried. I wasn’t sure what to think. I tried to care for both together and have Preston help me but day by day I saw him continue to grow distant from me. He didn’t call me anymore to get him out of his crib or run to the stairs to say bye to Daddy. He was different. I called my pediatrician at the time and he said the same thing as family and friends were all saying that it was jealousy and not to worry.
One afternoon as I was caring for my two boys I caught an episode of Oprah and the topic of the day was Autism. I immediately called my best friend and spoke to her about that show. We were hesitant in our thoughts but deep down the fear came over me that this could be what’s happening. On that show they specifically focused attention on children who had never spoke but Preston did. After that day I researched the internet and read everything I could find. I did find articles about children who stop verbalizing at the 18-24 month mark. I ran to my husband, family and friends with my findings. They pretty much said no that can’t be and he will grow out of it. It could possibly be jealousy because I had them back to back. I knew that deep down this wasn’t the case. My baby who talked and walked early was now regressing backwards fast. He was losing eye contact and all language. I had to do something and I pretty much had to do something fast. I dived right in scared and all. I didn’t have my pediatrician’s support so I changed him. My husband and parents were in slight denial so I had to do the beginning steps alone. I called every agency. I got his services started before his second birthday. I had a rotation of staff coming 5 days a week and a fluctuation of 4-6 different therapists a week. I took advantage of every resource that I could get a hold of. I learned that all information and programs are not readily accessible. You pretty much have to dig for information and nothing is given to you unless you first know about. I already had a tough skin but at this point I had to change to warrior mode all the time. During that time I met pessimistic people who thought my son wouldn’t be able to do things. I had to fire a few therapists for their negative attitudes. My motto is unless you are God himself you can’t tell me that he won’t do something. I fought for him like my life depended on it and I will always as long as I have air to breath.
Preston is now 11. He is the sweetest most lovable child. He makes us see what selfless love is. My son has always been musically inclined but he refuses to take lessons. However, if he likes a song on the radio or from a television show he will work his hardest to play the chords on the keyboard. He melts all those who come in his way with his smile. Currently he is somewhat verbal, which coming from a child who wasn’t expected to speak again we feel blessed he is able to say how he feels for the most part. He is able to let you know if he is hungry and somewhat tell you if he is hurting. He gives us plenty of cues and we are pretty in tuned with his emotions. If he doesn’t want to go somewhere or do something we take the cue and we are not going. He knows why he feels a certain way and I go with that. We have found so much joy in not limiting what we can and can’t do. He loves to travel, loves to ride planes and trains. His longest plane ride has been over 10 hours which is huge. I can still remember the first two plane rides and the frustration and the meltdowns but somehow we all survived it. I will never forget the kindness and encouragement that I received from one particular stranger during a time that was extremely stressful at the airport. He loves our “Chevy Chase vacations” (long distance car rides). He is able to go through the months of the year by indicating whose party or holiday that we will be attending. He loves his school and teachers. He has his favorite restaurants and he enjoys telling us what the next day schedule will be.
He has taught his younger siblings the most about patience and what love is even in the worst of days. We are family and we stick together and get through it. We embrace our imperfections and I think that has helped them see the world in a different light and others with disabilities as well. It is so fascinating to me seeing how the siblings interact and how they engage with one another. There was no training for; they had to dive in and adapt. We typically find Preston in his brother’s bed. He crawls in after we tuck them in. The love is undeniable.
Along the way we have met some incredible teachers and therapists who love what they do and help parents like me and my husband get through it. I wish there could be more accolades for these individuals. They take the day in and day out battles with our kids. They have cultivated them to be as dependent as they can be. Most of these teachers love what they do and it shows in how they love their students each in their own way. I am grateful for those individuals that really do care. They have no idea how they help both parents and the child. Our family and friends have learned with us on this journey. They also have helped us over some tough hurdles through their support and love which helped strengthen me and my husband as parents. Our faith and love has been our anchor. It has carried us through some of the toughest moments and challenges.
Preston is unique like all children and we have learned how there are endless possibilities for kids like him. We try to expose him to everything. He loves new clothes and dressing up. He enjoys looking at how handsome he is. His favorite place is the pool and he loves to get haircuts now. He has grown so much over the last year and he is becoming a young man. I am constantly researching new programs to enrich him. We try to keep an open mind with all techniques.
We will never stop believing and being optimistic about Preston’s future. He is the light of our lives and his love radiates us. He was chosen to be this way and we have accepted it. We will continue to foster his growth. He gives us a reason each and every day to push forward. Each morning like clockwork he climbs into my bed to get a quick cuddle and get us up for the day. He turns on the television and makes sure we get up. His genuine love for life and happiness makes each day better. We hold on to that piercing smile. We know that our faith will carry us through.