Monday, September 27, 2010

Looking Back: A Year After Diagnosis (May 2009)

Norrin putting together a 60 piece puzzle

There is not a book in the world that can prepare you for parenthood – not a single one, I know because I’ve read more than a few while trying to do so. And even though I believed I prepared myself for Norrin’s diagnosis, it was still a complete shock. There was that small part of me that thought the doctor would say Norrin was “typical” and that there was no need to worry. If there was ever a moment in my life that I could actually feel my heart break, it was that moment when the doctor said: Norrin has been diagnosed with Autistic Disorder and Global Developmental Delay.

At 2 years and 3 months Norrin, had the cognitive level of a 14 month old and the language level of a 7 month old. Norrin didn’t point, wave or clap (a behavior that had regressed). He had no real words – at one point he had two or three words, but his language had regressed also). He didn’t jump or imitate behavior. He was extremely hyper and very self-directed. And he flapped his hands. Every evaluation score was either low or moderately low. And while the doctor recommended ABA/Speech/OT & PT – he offered little hope.

Walking into the doctor’s office my husband, Joseph, had been so optimistic, so certain that it could not be autism that I couldn’t look at him. I knew by the way he squeezed my hand that his heart was breaking too, that all the dreams that a father has for his son were crumbling. Joseph opened his mouth to ask the doctor a question, but stumbled over his words. He let go of my hand and put it to his mouth and cleared his throat. His leg was shaking next to mine. In our eight years together I had never seen him like that, he was always the person that held me together. I put my arm around his shoulder – we were in this together and it was my turn to be the strong one.

Later that day, when we walked into the babysitter’s house to pick up Norrin, the television was on and the other children were all sitting together, laughing and playing while Norrin sat in his playpen, alone and staring blankly at the television. Any other day, the image wouldn’t have bothered me but on this particular day, I couldn’t help but think that this was to be a foreshadowing of his life: isolated from his peers and alone in his own little box. Would he ever speak? Would he have a “normal” life? Would he ever participate in sports? Would he ever go to college? Would he be able to make friends, live independently, fall in love or get married? All these questions and thoughts about his future raced through my head. I picked him up and hugged him as tight as I could.

I couldn’t help but feel guilty. Was it my fault? I was angry, overwhelmed, depressed and guilty – always guilty. After a diagnosis, there is a series of emotions that a parent goes through, I felt them all – and some emotions are better left unsaid.

For the next year, we had a therapist in our

apartment 5 to 6
days out of the week for 2 to 3 hours a day. Talk about having your life turned upside down. Imagine having a stranger in your home every day – making your child cry, forcing he/she to do things they don’t want to do, teaching them things that come so naturally to other children (like pointing a finger). Joseph and I alternated our days, rushing home from work for Norrin’s daily therapy – with just enough time to wash the subway filth off our hands before a therapist rang the bell. It’s time consuming and intrusive but I wouldn’t have had it any other way.

The progress Norrin has made astounds me! In the beginning there was a lot of crying, biting and tantrums, but with patience (lots of patience) and a lot of work he is getting it – really and truly getting it! He can point, he can clap, and he can wave. After months of waiting to hear him speak, the first time he said Mommy was one of the best moments of my life. He can verbally communicate enough to get his needs met. He answers some questions and follows 2 to 3 step commands – he puts his empty cup in the sink, puts his dirty clothes in the hamper and throws away his garbage (I often joke that he’s better trained than most husbands). He can tell me all the names of his classmates. He knows all of his letters (upper case and lower case), can count to 20 (can even do it backwards!), and he can complete a 60 piece puzzle. He loves books and like all “typical” boys his age, he can watch Disney Cars over and over again.

The other day after I scolded him, he started to cry and then said, “sowweee mommeee.” I wanted to jump up and down – he knew what it was to be sorry! He understood my feelings. And at bedtime, Norrin has no problem saying “goodbye mommy” and taking me by the hand to kick me out of his room – it’s his time with daddy. And even though it kind of hurts my feelings, inside, I say to myself, “that’s good talking” because it makes me happy that he is using spontaneous speech. You see, in our house we celebrate everything – there is no such thing as a small feat.

People often tell me that Norrin is lucky to have parents like me and Joseph. I don’t know about that. Joseph and I are the lucky ones. Norrin has changed me, he has taught me patience and compassion and he’s made me realize that I’m a lot stronger than I ever thought I could be. 

I used to worry so much about all the things he couldn’t or wouldn’t do. I used to worry constantly about his future. And for a little while, I may have even lost hope. But just watching him grow and develop over the last year has made me realize that there is plenty of time. There are still many things he cannot do but a year makes a world of difference. So now I look to future with hope and excitement. Because if he’s come this far in a year, what will he be like in 10 years? His future is full of possibilities. But I’m not going to rush it. I want to sit and enjoy my time with him now – everything else will fall into place. Because as much as I tried to prepare myself for parenthood and for dealing with a child with autism, I realized that you can’t prepare for it – it’s not a test that you can study for. You will never find the answers in a book. The real answers come with time, patience and love – and Norrin taught me that.


  1. I should say this post is very insparational for me... Thank you for sharing!


AutismWonderland - written by Lisa Quinones-Fontanez - is a personal blog chronicling a NYC family's journey with autism, while also sharing local resources for children/families with special needs.