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Time, Patience, and Love

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 that 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 were ever a moment in my life that I could actually feel my heart break, it would have been moment when the doctor said that Norrin had 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. He 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 hyperactive, very self-directed, and he flapped his hands. Every evaluation score was either low or moderately low. And while the doctor recommended ABA and speech, occupational, and physical therapies, he offered little hope.

Walking into the doctor’s office, I couldn’t look at my husband, Joseph, who had been so optimistic, so certain that it could not be autism. 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, put his hand 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. That day, 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, we noticed that all the other children were 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 the moment foreshadowed his future life, a life in which he would be 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 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 feeling guilty – always feeling 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 five to six days out of the week for two to three hours per day. Talk about having your life turned upside down. Imagine having a stranger in your home every day, making your child cry, forcing him to do things he doesn’t want to do, teaching him 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 only enough time to wash the subway filth off of 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 that 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 hard work he is getting it – really and truly getting it! He can point, he can clap, and he can wave. The first time I heard him say “Mommy” after I waited for months to hear him speak 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 two to three 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 (even backwards!), and he can complete a 60 piece puzzle. He loves books and like all “typical” boys his age, he can watch Disney·Pixar’s film, 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 meant to be sorry! He understood my feelings!

At bedtime, Norrin has no problem saying, “Goodbye Mommy” and taking me by the hand to kick me out of his room to have alone time with daddy.  Even though it kind of hurts my feelings, I think to myself, “That’s good talking!” 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 Joseph and me. 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 Norrin 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.

Now I look to future with hope and excitement. If Norrin has come this far in one year imagine how much far he can go in ten 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.

Although I tried to prepare myself for parenthood and for dealing with a child with autism, I have realized that full preparation is impossible. 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.

Lisa Quinones-Fontanez

Autism Wonderland

2012

 

The views expressed in this story are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.

 

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