Five Years After An Autism Diagnosis (part 2)

Thursday, May 23rd, 2013

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.

To read Five Years After An Autism Diagnosis (part 1 – On The Day My Son Was Diagnosed with Autism) click HERE

I cannot believe it’s been five years since my son Norrin was diagnosed with autism. Sunday, May 19th – our autism anniversary – passed with little fanfare. It was a rainy, lazy and dreary day. My husband, Joseph, took a two hour nap, I did laundry and relaxed for a while with a good book. I played with Norrin - we worked on a art project that required patience, concentration and using his pincer grasp.

The day before we spent the afternoon walking around Arthur Avenue – the Little Italy Section of The Bronx. After we went to the playground and walked around the shops, we ate lunch at Mario’s, one of our favorite restaurants. I indulged in a glass of wine, Joseph ordered a beer. When Norrin told the waiter what he wanted to drink, he used the words please and thank you. Norrin sat patiently with his iPad as we waited for our food – and when he got anxious or too loud, we prompted him and he was able to continue playing nicely.  Joseph and I talked about our week, the errands we needed to do and summer plans. We reminisced that Mario’s was where we had one of our first dates (almost 13 years ago). I don’t even think the subject of autism came up.

The weekend for the most part was uneventful and not any different from our usual weekend, like any other “normal” family. We go to the park, we go out to eat, we run errands, we do chores, we sit back and enjoy the moment.

Five years ago, I couldn’t see our life returning to normal. I couldn’t see us going out to eat as a family or me sitting on the sofa reading a book that wasn’t autism related. Five years ago, I didn’t know anyone raising an autistic child. I didn’t even know what autism was. When I think back to the first days after Norrin was diagnosed, it was so hard to have hope. Because there was no one who could offer it – not even the doctor who diagnosed Norrin.

Then we started working with therapists and found an appropriate center based program for Norrin. And slowly we started seeing progress. Norrin learned to point and say a few words. He learned to makes the signs for more and all done. With each new accomplishment, I was given a glimmer of hope. They were often the milestones that kept me going.

Five years ago I couldn’t see beyond all the things Norrin couldn’t do. Now I see how far he’s come and celebrate everything Norrin can do. All the little things like a smile or a wave or a spontaneous WH question.

It’s been amazing watching Norrin grow up, watching him grow with autism. Seeing it evolve and mature. He is no where near being a ‘typical’ kid but he’s happy. At seven years old, Norrin has enough language to get his basic needs met. He uses the bathroom independently (though still needs some supervision). Norrin navigates the iPad better than many adults.  He has a playful and loving disposition, lots of opinions and a fierce determination. He’s one of the hardest working seven-years old I know and I admire him.

I wish that I could say that it’s gotten easier during these last five years. It hasn’t. I am still learning every day. There are nights when I still worry about Norrin’s future and cry. But I have a community of parents who understand me. I have people who I can look to for guidance. I have seen progress. I have hope.

I think about Norrin five years ago and where he is now. And I know in another five years I will look back at his progress with amazement. Norrin’s come such a long way. And so have I.

Five Years After An Autism Diagnosis (part 1)

Wednesday, May 15th, 2013

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.

In a few days we will celebrate our five year autism anniversary. I say celebrate because when I think of Norrin five years ago and I look at him now – I see a completely different kid. I have a lot to be grateful for. I have so much to hope for. But on the day Norrin was diagnosed with autism – May 19, 2008 – I couldn’t see any of that. Many people have read my blog posts and written to me asking how I came to be “okay” with autism. But I wasn’t always okay with it. Acceptance was a process for me. Any parent who has heard the words, “your child has autism” remembers everything they felt that day. Today I’m sharing that day with you and next week I’ll share what it took for me to be okay with autism.

On the day Norrin was diagnosed with Autistic Disorder and Global Development Developmental Delay, I felt my heart break. My husband, Joseph, had been so optimistic, so certain that it could not be autism. And I knew by the way Joseph squeezed my hand that his heart was breaking too. Joseph had all the dreams that a father has for a son and within seconds I could feel Joseph’s dreams crumbling. I could feel his leg shaking next to mine.

Even though I tried to prepare myself, there was that small big part of me that wanted to hear that Norrin was “typical” and that there was no need to worry.

On the day Norrin was diagnosed, I put my arm around Joseph in an attempt to comfort him and I thought of our wedding day. Everyone told us that we were perfect together. And then I remembered the moments after Norrin was first born: I immediately looked his wrinkled little body over, counted his fingers and toes and thinking that he was absolutely perfect. And there we were, this  seemingly perfect couple being told that our child was not.

We were handed a twenty-page evaluation, detailing all the things Norrin couldn’t do, all the milestones he had yet to reach.  At two years and three months old, Norrin had the cognitive level of a fourteen-month old and the language level of a seven-month old. I hated reading the evaluations: on paper Norrin sounded horrible. Nowhere in the evaluation did it talk about his dimpled smile or the sound of his laugh. Nowhere did it describe how his big brown eyes sparkled when he was happy. Or that he loved to read and was fascinated by letters and numbers.

Joseph and I cried in the car, neither one of us really able to comfort the other. Both of us thinking of all the things we could’ve done to prevent autism.

When we picked Norrin up from the babysitter, it was then that autism became painfully real.  Norrin was sitting in a playpen spinning the wheels of a car while the other children were playing. It was too easy to imagine how isolating and sad his life – our life – would be. This was not the life we were supposed to have, I thought.

Nothing I read prepared me for the pain, anger and sadness that I felt. On the day Norrin was diagnosed, I went into our bedroom, closed the door and buried my face in my pillow screaming as loud as could. Punching and kicking like a three year old having a tantrum. Why Norrin? Why Me?

Everyone kept telling me, “God doesn’t give us anything we can’t handle.” But autism and raising a child with a disability wasn’t something I wanted to handle.

On the day Norrin was diagnosed, I called up my best friend to tell her the news. After a few minutes, I asked how she was doing. She was seven months pregnant and excited about her baby shower. While I was happy for her, I couldn’t feel happy with her. Her pregnancy, her happiness and hope only reminded me of my loss.

On the day Norrin was diagnosed with autism, I cried myself to sleep. And I cried for many nights after that.

Part 2 to come: Wednesday May 22, 2013

Autism Chat with Experts (a recap)

Wednesday, April 10th, 2013

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.

Last Wednesday Parents and Easter Seals hosted an autism-themed chat on the Parents Facebook page.

I had prepared myself for Norrin to be diagnosed with autism. Throughout the evaluation process, I was reading and researching. But still hearing it from the doctor was still heartbreaking. It’s not the thing parents expect. But I knew I couldn’t allow myself to be sad for too long. Norrin needed me. (Lisa, AutismWonderland)

Parents can use CDC’s “Learn the Signs. Act Early.” tools to check their child’s development - http://go.usa.gov/yVm.  Every child is different & develops at his/her own pace, but by learning the milestones, parents can recognize if their child has a developmental delay. If you have concerns talk to your child’s doctor.  (Dr. Peacock, CDC)

What is the first piece of advice you would give parents after their child is diagnosed with autism?

Build a community of support and gather quality information to inform your child’s treatment. Personally connect with those available to offer YOU support (family, friends, faith community). Share news of the diagnosis and let them support you. Gather information and immediately get your child enrolled in quality treatment. There is a lot of misinformation out there about autism – use quality sources for information gathering. The CDC (www.cdc.gov/ncbddd/autism/index.html), the Association for Science in Autism Treatment (www.asatonline.org/) and the American Academy of Pediatrics (www.aap.org) are great places to start learning about quality treatment for your child. (Dr. Wright, Easter Seals)

How do you explain autism on a child’s level?

Don’t make it complicated or over whelming. There’s a great book called “My friend with Autism” by Beverly Bishop – It’s perfect to help kids understand autism. (Lisa, AutismWonderland)

While the chat made me realize that people are aware of and curious about autism, there is still so much unknown. I was really inspired by many of the questions parents asked me – questions that deserve more than one or two line answers. Over the next few weeks, I plan on answering some questions (in greater detail) about our experiences with potty training, school advocacy and socialization. So please check back here or my Facebook page (AutismWonderland) and look for them.

And if you have a question about autism, that you’d like me to answer – please feel free to leave it in the comment section!

The Fine Line for Autism Parents

Wednesday, March 13th, 2013

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.

When Norrin was younger, before he was diagnosed with autism, friends and family used to make fun of the way I hovered around Norrin. “Bubble Boy,” my one friend liked to call him. And family would urge me to sit down, to relax and let Norrin be.   They all said, he was just being a boy – but he was a busy kid – constantly running around, getting hurt or into something he shouldn’t.

After Norrin’s diagnosis, I hovered even more especially when we were out visiting or in crowded places. When out walking – I never let go of his hand. I have this fear of letting go.

But Norrin is seven now and becoming more independent every day. I need to let go and let him experience things without me hovering behind him.

A few Sundays ago my husband, Joseph, decided to register Norrin for his first Road Runners Kids race. I was okay with Norrin running up until we got there and I saw the crowd. Street blocks filled with “typical” kids and their parents, music blasting and bitter cold winds. Naturally my mother hover instincts kicked in. As we waited I held his hand and put an arm over his shoulder. And every few minutes I kept asking if he was tired or wanted to go home. All he had to do was say the word and we were out of there. But Joseph was determined for Norrin run the race.

I wanted to keep Norrin “safe,” Joseph wanted Norrin to take a chance. This is the line we walk along constantly.

Like when we went to Sesame Place and Joseph insisted Norrin ride on the roller coaster. I thought it would be ‘too scary’ for him. Norrin loved it!

Or that time we went to the The Intrepid and Joseph took Norrin on the Gforce Encounter Simulator ride. We spent a good fifteen minutes arguing  discussing whether or not it was appropriate for Norrin. The thing was enclosed and went upside down. When Joseph and Norrin got on, I had to walk away. When the ride was over, Norrin stepped off with a huge grin wanting to “go again.”

And that Sunday, Norrrin ran his race and had a great time.

Thinking of all this reminds me of that Parenthood episode – the one where Max wants to run for student body president. Christina encourages Max to go for it while Adam thinks its a bad idea. Adam is scared because he assumes Max will lose. And when Max won, I was on my sofa sobbing like a baby.

All parents want to protect their children but when your child has special needs – your life sometimes revolves around wanting and needing to protect them. There’s a fine line between knowing when to hold on and when to let go. And that line becomes easily blurred. I’m grateful I have a partner like Joseph who helps me to see the line clearly.

Do you having trouble knowing when to hold on or when to let go?

Please tell me, it’s not just me.

AutisMate: A New App for Individuals with Autism

Wednesday, February 27th, 2013

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.

A few weeks ago in an effort to get my seven-year-old son, Norrin, settled into a routine, we (our amazing therapist) created a visual schedule. It’s been so helpful for  us that I was thinking of creating schedules for other parts of our day – after school, bedtime, weekends. But I’m as crafty as Norrin’s therapist and it’s just one more thing on my never ending to do list. So when I was asked to review AutisMate, a new app for the iPad, I immediately said yes!

AutisMate is an iPad app that is designed to overcome the developmental challenges associated with autism by utilizing a more comprehensive, holistic approach that emphasizes the interconnected issues of communication and behavioral skills together.

Jonathan Izak, founder of AutisMate, collaborated with over 300 special educators, tech experts, clinicians and parents to create the app.  However, Izak, was inspired by his younger brother Oriel who is autistic and nonverbal. Empathetic to the frustrations individuals with autism may have, Izak describes his brother as “someone yearning to communicate with the outside world.” The AutisMate is designed to help alleviate those frustrations. More importantly, AutisMate can be personalized to suit individual needs and to grow with the user.

Within minutes of downloading AutisMate, I was immediately impressed. It is so user friendly and offers plenty of help along the way. The “My House” menu features several rooms in a house. One of the many cool things about this app, is that you can upload pictures of rooms in your own home to replace the default photos. You can also download additional scenes like “My Pets,” “Dining Room” or “The Park.” And since the AutisMate is GPS enabled – you can create your own scenes.

The Kitchen is one of my favorite rooms. Norrin likes to click on the hands by the sink – a video of someone washing their hands pops up.

We are really working on toothbrushing – this scene will be helpful for us. By clicking on the toothbrush a video pops up of a little boy brushing his teeth.

On the bottom right corner of each scene there is a  ”1 2 3 star” – by clicking on that, the visual scheduler appears – another of my favorite features! The “Brushing teeth” visual schedule even has a timer to show kids how long they should be brushing. After checking off each step, they work until they reach their reward (goal). Again, you are able to create your own visual schedules and customize it with your own photos.

The sentence builder will be especially useful for individuals who are not only non-verbal but for those who want to expand their vocabulary. By clicking on each picture, you can create a sentence and have the sentence repeated to you.

I’m not tech savvy at all, but this was easy enough for me to navigate and figure out. And I’m excited to create new schedules for Norrin and incorporate this into his daily routine. Norrin has been having fun with it too and the toothbrushing schedule and video is really helping us. This is something I could see us using for years.

The app is available via iTunes App Store for $149.99 and while it is on the more expensive side – it’s truly an investment and one that will grow as your child grows.

Disclaimer: I was provided with a complimentary app for review, all opinions are my own