Loss and Unconditional Love

April is Autism Awareness month, so I decided to write a post about how it feels to be the parent of a child with special needs.

I waited a long time to become a mom. I had this grand plan in store, career first then children. When I finished student teaching and got my first job at LBJ, even then, having a child seemed so distant. I wanted to enjoy my job and be the best at it, going to trainings, learning more and more on ways to engage and inspire young minds. Tyler arrived in 2005. I waited so long for him and when I returned to work, I struggled. I had always loved my job, but missed Tyler so terribly. By the end of the year, I made the decision to resign my position and become a stay-at-home mom. Even with all of the struggles I have had, this was the best decision for me --it gave me quality time to spend with Tyler and later take him to all of his therapy appointments.

I cherished every moment of my time with Tyler. We had play-dates, went to story time at the library, went to the park and just enjoyed life. Things began to change when he was 2 ½ -- tantrums, crying, screaming and not enough words. I knew something was wrong. We went to Tyler’s pediatrician and I expressed my concerns with his language development and all of the tantrums he had been having. He was diagnosed with an expressive language delay and we were sent off to 2 specialists – an audiologist and a speech pathologist. As I thought, his hearing test came out within the normal range. But, the results of his speech testing were not so good. He was diagnosed with a severe expressive and receptive language delay and this is when my world began to shatter. I knew something bigger was looming. At the time, I just couldn’t wrap my head around it. At this time, I as five months pregnant with Luke and was consumed with guilt and extremely emotional. I should have been ecstatic to be having another baby, but all I could do was worry about Tyler and feel sad.

Tyler started speech therapy in December 2007. He progressed steadily with his language, although still behind that of his peers. We were still having behavioral problems as well. I started reading every single book I could get my hands on about language delays and came across books on autism, all of which I read. Tyler’s speech therapist told me about the school program, PPCD (Preschool Program for Children with Disabilities) and I set up his testing date. I remember his first testing all too well, I left in tears. The diagnostician and speech therapist tested him for 15 minutes and then told me he needed further evaluation. I was floored that they spent such a short amount of time with him, yet knew something was terribly wrong. In June, the district evaluated him and then in July, an Occupation Therapist and Pediatric Neurologist. The results all came in within a few days of each other – Autism with Asperger’s like characteristics (AISD), Autism (neurologist) or sensory processing disorder (OT). It was at that moment that my entire world changed, that I became an advocate, not only for my son but for children with special needs.

Being the parent of a child with special needs is incredibly challenging, yet I would not trade it for the world. I would not even know what to do without Tyler! He has taught me so much about patience, acceptance, understanding and unconditional love.

As a parent of a child with autism, I am constantly aware of the surroundings and hyper vigilant. Will this place be too much for Tyler? Will he become over-stimulated, will he tantrum, become anxious? What will set him off? You always walk on egg shells, never knowing how things will go. Will you ever have a carefree, easy day? Those are not in the cards, my friend. You also feel incredibly helpless, like you can’t ever do anything to fix it, since autism is incurable. Your mind racks with worry at the future, will your child be able to function independently in society? Will he be teased, harassed because he is different? You become fierce and strong, able to conquer or do anything you set your mind to. You also try to blow off the stares, the rude comments, which sometime set you off and make you enlighten an idiotic bystander. Sometimes I REALLY enjoy doing this and seeing the look on their faces when I get krunk with them, but in a nice way. And then there is the guilt. Am I doing enough to help my child? Will he ever get better? Did I do something to cause this? It is incredibly hard! Yet this is my life, the life of a parent who is lucky enough to call the sweetest, most intelligent little boy who happens to have autism her own. Some may say I’m unlucky, but I would have to disagree. I feel blessed beyond belief.