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.

My Holland

Sometimes the laughter in mothering is the recognition of the ironies and absurdities. Sometime, though, it's just pure, unthinking delight. ~Barbara Shapiro

Being a parent is one of the hardest, yet most rewarding jobs you can ever aspire to have. I love being a mom, but lately I have been feeling like such a failure. When you have a child with special needs, sometimes you feel like what you do is never going to be enough; and then you worry about the toll that it will take on your other children, how they will cope, how you will cope. It’s a vicious cycle of worry. Recently, I have been thinking a great deal about our challenges on the autism journey and how far Tyler has come. I have also thought of how far I have come in this journey, from denial to acceptance. Remembering where we have come from made me forget about my thoughts of failure; it made me feel strong and fierce, like a conqueror of worlds. The past three years have taught me a lot about life and the most important thing is to never give up hope!

When Tyler was diagnosed with autism, I saw all of my hopes and dreams shattered for this “perfect” little life I had imagined. Someone sent me a beautiful poem entitled, “Welcome to Holland,” which was timely and put everything into perspective for me. I am including a link for the poem and I highly encourage you to read it. I had a lot of sadness, anger, resentment; you name it, I felt it. For a while, I mourned the loss of having a “normal child” and not being able to go to “Italy.” I was an emotional trainwreck, so I found the strength and lifted myself out of the darkest depths of despair. But you know what,“Holland,” is pretty damn awesome! It may take us a while to hit our milestones, but when we do, it’s amazing and magical; it makes the struggle to get there incredibly worthwhile. Potty training may be giving me a few extra gray hairs, but Tyler is slowly and surely getting there. He took the initiative and pooped on the potty last night; we celebrated and lived up that moment and made him feel like a million bucks.

Verbally, Tyler has been having an explosion of language. He has also become quite independent and opinionated. An example of his verbal explosion would be a recent trip to a restaurant. We were all ordering our dinner and he says this on cue, “I would like a Grilled Cheese please.” This blew me away! He is especially passionate and opinionated about music. For a while there, he had me burnt out on Usher, who he calls “Usha.” Luke is having the same musical obsessions, which means that if I want to have a peaceful trip anywhere, I will have to give in and listen to their favorites, namely Usher. Recently, I downloaded some new music from I-tunes, some alternative. I made a mix CD with Broken Social Scene, Arcade Fire, Death Cab for Cutie, Phoenix, Metric, Mumford & Sons and Iron & Wine. Surprisingly, the boys love it, especially Metric. Our new favorite song is “Gold Gun Girls” which we now listen to repeatedly. Thank goodness, I was about to sacrifice our Usher CD to the gods.

I love watching Tyler and Luke’s relationship grow, and their brotherly bond deepen. They are so good for each other. I have read that siblings of children with special needs are very compassionate people and we definitely need more of those types in our society today. They look out for each other, laugh with (and at) each other, share their fascinations and, of course, rebel against me. My heart leaps for joy when they hug or tell each other “I love you.” It is in these moments where I feel incredibly blessed and nothing else seems to matter.

A while back, I would get angered when people would tell me, "God chose you for a reason to be Tyler’s mom." I would think to myself, “why didn’t he just give me some super powers or something?” Then I realized that I already have them; I’m an autism mama and he has given me the greatest gift of all, a son to love.

Here's the link for Welcome to Holland:
http://www.our-kids.org/Archives/Holland.html

Beautiful Day

I had a hard time getting out of bed today, but I am so glad I did. What an amazing day it was – the perfect day for a walk, The Greater Austin Walk Now for Autism. The last time I did the walk, it was 2008 and it was so cold! This year, the weather was perfect, in the 70s, not a cloud in the sky, a big beautiful Texas sky. Looking around me, I saw many other people like me, parents of children with autism, at various places on the spectrum. I felt bad that Tyler wasn’t there, but it would have been incredibly over-stimulating for him – the people, the sites, the sounds. The boys had been sick earlier this week and we had tickets for Curious George Live later in the day, so Geoff and I decided to keep them at home.

I am proud to say that we exceeded our Team Tyler goal. As I turned in my donations, I thought about the good they would bring, as the search for answers continues. I am so glad I was not alone, Sammie, my mother-in-law (with more emphasis on mother), accompanied me. We had such a great time and saw some old and new friends along the way. We also saw Darth Vader, his storm troopers and Geoffrey from Toys R’ Us. Tyler was terrified of these characters last time. I was excited to take a picture with Darth Vader; I LOVED Star Wars growing up. One day, I am sure Tyler will too.

Loriana Hernandez, anchor of Fox 7 News was the emcee, as she is year after year. Her niece Maggie has autism and as she told her story, my eyes filled with tears. I was so overwhelmed by emotion and the feeling that I am not alone in this. Another lady shared her story, and once again, tears streamed down my face. I have always been an empathetic person, but I feel even more so now. And this cause is so near and dear to my heart, yet still a little new. I could not hold back the tears and they flowed down my face like a waterfall. But they were not tears of sorrow; they were tears of joy at being in a large group of people who had the same life experience as me. It’s important to find comfort in others, especially ones who share a similar experience -- autism. Darth Vader and his storm troopers probably thought I was a nutcase, but you know what, who cares? These were tears I could no longer hold back, and they freed up something in me. They also made me think of my journey and the hope I have for Tyler.

Another lady talked about how hard autism is on the family as a whole, on the siblings, grandparents, aunts and uncles. I remember after Tyler was diagnosed, what an emotional train wreck I was! I also remember how hard it was on my sisters and Tyler’s grandparents. I have never talked about this with anyone. They wanted to help out so much, but they did not know what to say or what to do. But having my family and close friends helped me get through it, even if they felt helpless; with their love and support, they really helped lift me up and out of despair. This certainly has made me a stronger person and I do feel that there is nothing I cannot conquer.

I have high hopes that next year I will exceed my goal and donations from this year. At first I was discouraged and felt that I would not reach my goal, but slowly and surely, things looked up. I need to make time to do this every year. Giving back is extremely important and something that we should all do, especially a cause that you feel so passionately about. Autism has certainly been that for me, a life changing and challenging experience, but I wouldn’t have it any other way.