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

A Mother’s Day Wish List For An Autism Mom

Wednesday, May 8th, 2013

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

Sunday is Mother’s Day and when I was growing up, my mom used to say that all she wanted was peace and quiet. She never asked for anything or expected anything more than a card from us and/or my dad.  Now that I’m a mom, I feel the same way. Just this morning I told my husband not to buy me anything for Mother’s Day. Well I actually said, “Please don’t buy me clothes because if you buy something too small, I’ll feel bad.” (I’ve gained weight and my husband, though incredibly thoughtful, is known for buying me the clothes two sizes too small.)

Last night I posted a question to my Facebook page. I asked what autism moms what was on their wish list for Mother’s Day. I loved all the responses so much I’m sharing my favorites below:

A Day Free From Housework. Wouldn’t that be lovely! If I walked in and found someone else cleaning, I’d be one happy mom.

To Hear “I Love You.”  Kids with autism don’t often express themselves spontaneously. Norrin rarely says “I love you” on his own, I always say it first. And kids who are non-verbal, cannot say “I love you” at all.  If you know a mom with a non-verbal child, maybe you can help them make a special card to give as a gift. If a child is verbal, maybe you can prompt them to say “I love you.” (Typically, I’m not a fan of prompting “I love you” but in some cases – I’m okay with it.)

A Mani/Pedi. YES PLEASE! Autism moms rarely treat themselves. A mani/pedi would make her feel pretty and rejuvenated.

A Day Out with Girlfriends. Every mom needs girl time.  If your bestie is an autism mom, give her  a call and take her out for a cup of coffee, a walk or a mani/pedi (see above!).

Dinner & Dishes. Give an autism mom a break. Cook her a nice meal and do the dishes. Let mom kick back on the sofa.

A Movie. While mom is relaxing after that delicious meal you cooked, let her watch her favorite movie in total peace.

A Good Book. If movies aren’t her thing – give her some time to curl up with a glass of wine and a good book.

SLEEP. You want to make an autism mom happy on Mother’s Day? LET HER SLEEP. Seriously. Close the bedroom door, keep the kids busy and just let her sleep. Let her wake up on her own. It could be the best gift you give her.

I’d be happy with any of these things on Mother’s Day. What’s on your Mother’s Day Wish List?

My Moment Of Autism Awareness

Wednesday, May 1st, 2013

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

Yesterday was the last day of Autism Awareness Month. But for us autism awareness is year round. Over the last five years (since Norrin’s diagnosis) autism has become part of our normal and it’s been easy to take it for granted.

I expect to come home from work and find a therapist working with Norrin.

I expect Norrin to be in school twelve months out of the year.

I expect him to be a small class of six kids and three teachers.

I expect IEP meetings, evaluations and social workers showing up at our door.

I expect him to have difficulty transitioning from one routine to the next.

I expect him to have difficulty  with socialization.

I guess what I’m trying to say is: I’m used to autism by now. I’m used to way it has altered our lives.

But still there are moments when I forget.

Like this weekend when went to a kid friendly amusement park. And right before leaving, we walked into the gift shop. Norrin stood at the door, scanning the store before he saw what he wanted and made a beeline for it.

It’s a chunky yellow school bus. In big bold letters I see: 18 months – 4 years old.  A “baby” toy. (Norrin is seven.)

Norrin’s been eyeing this school bus the last three times we visited the park. And each time I’ve said no.

And I was ready to say again.

I know. I know. I know I shouldn’t care about these things. I know to look beyond time tables and milestones and age appropriate toys.

“He asks for it every time we come here. Who cares about the age,” my husband said. And I gave in.

But I refused to give Norrin the school bus in the car. He would have to earn it. I told him he could have the bus when we got home, after he cleaned his room.

As soon as we walked in, Norrin took off his shoes and socks and went to his room and moments later came back out. “I’m all finished,” he proudly proclaimed. He grabbed me by the hand and I followed him into his room.

All the toys were picked up. His books were put away. I could tell he was trying so hard to stand still. He was smiling, his big brown eyes sparkled. And while his hands were at his sides, his fingers were wriggling. His eager anticipation made me smile.

“How do you feel?” he asked.

“You did a good job. I feel proud.”

When I handed Norrin the school bus, he quickly ripped it out from its box and gathered some of his toy figurines to place inside. I watched him as he held the school bus at eye level, his free hand flapping with excitement.

“How about we play like this,” I said.  Then I showed him how to spread out his figurines all over his room. And then I showed him how to drive the school bus around, picking up the figurines for school. While Norrin was wheeling the bus, we sang “Wheels on the bus.”

I watched as he played with this school bus appropriate for a child years younger than him and he still needed help. We still continue to work on Norrin’s imaginative play skills.

Suddenly, it was like a blue light bulb just went off. And autism had become very real for me. I needed a moment to be aware of it and accept it. I’ve had these moments before. And I suspect I’ll have them again.

I like to think that I am autism aware on a daily basis. But sometimes awareness catches me by surprise.

Does autism catch ever catch you by surprise? What are your moments of autism awareness?

Potty Training Your Kid With Autism

Wednesday, April 24th, 2013

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

Norrin was diagnosed with autism when he was 2 years 5 months old – right around the age most kids start potty training. But at the time Norrin was diagnosed, he couldn’t even point his finger.

Or clap his hands.

Or wave hello/goodbye.

Or speak.

While potty training should have been at the bottom of the list of things I wanted Norrin to learn, there was this desire to be like a typical parent – for him to be a typical kid. And I wanted to start potty training Norrin at the age the other parents did. So a few months after the therapists started working with Norrin – we started.

And then we stopped. Because potty training a kid who couldn’t speak or have the motor coordination to clap, point, wave can be…difficult (among other things).

I realized that with everything else, I needed to take potty training step by step. So if you’re thinking of potty training your kid with autism – here are some things to keep in mind:

1. Ignore what the other kids/parents are doing. Parents of typical kids love to talk about potty training – how they did it and how long it took them. I remember talking to one mom who expressed her frustration with the process because it took a whole two weeks. And I felt like a failure because we had been working on potty training for months (with little success). I couldn’t think about other kids. I had to concentrate on mine.

2. Start when your child is ready. Aside from being emotionally ready, they need to be physically ready. One of the things our Applied Behavior Analysis (ABA) therapist stressed was Norrin learning how to to pull down his pants and underwear. Think about all the physical movement required to use the bathroom especially for boys. Potty training requires a certain amount of independence and if a child cannot remove his undergarments to go to the bathroom then it may be best to hold off until they can.

3. Everyone needs to be on board. When we started potty training Norrin, we started at home. We communicated with his teachers about potty training and asked for tips. We used to send Norrin to school wearing underwear with a Pull-Up underneath. Once he got to school – the Pull-Up was removed and his teachers took him to the bathroom throughout the day. Pull-Ups that have side openings worked best for potty training as it allowed teachers to remove it without removing all the clothing. It was a collaborative effort.

4. You need to be consistent. Once you determine your child is ready. Once you get everyone on board – teachers, sitters, grandparents – whoever. You need to be consistent. So even when you’re out  and about on the weekends, even if your child has a Pull-Up on (just in case), take them to the bathroom – get them accustomed to public restrooms.

5. Be patient. It took us more than two years to potty train Norrin. Don’t think potty training will take a week, two weeks, or a month. Do not put your child (or yourself) on a deadline. Start when you start and finish when you finish.

6. Have a sense of humor. Potty training is messy business (so be sure to stock up on paper towels and cleaning wipes). Accept it. Laugh it off whenever possible. Though I know, sometimes it can be hard. If you want to laugh at one of our potty training adventures, check out this post - Norrin and the Royal Flushing Privies. 

Norrin is 7-years-old. He’s fully potty trained during the day. Yes he still needs help (with buttons and zippers and cleaning), and he still needs prompting (washing hands). Night time potty training is a whole other ball game. We’re not even trying. And I’m not going stress about it, because I’m sure Norrin will get it. In his own time.

If you’d like a resource book on potty training special needs kids, Toilet Training for Individuals with Autism or Other Developmental Issues was really helpful.

Will A Child With Autism Know To “Look For The Helpers”

Wednesday, April 17th, 2013

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

“What’s wrong, Mommy?” My 7-year-old son Norrin asked, putting his finger to the tear falling down my cheek.

We were sitting on the sofa last night and I was watching the news. Crying as an 8-year-old girl was talking about her classmate Martin Richard – the youngest victim of the Boston Marathon bombing.

Before I could answer, Norrin pointed to the television and said, “It’s a sad movie.”

I pulled Norrin closer to give him a hug and kiss. “Yes, baby. It’s a sad movie.”

These are the moments I am grateful for autism. Norrin is blissfully unaware of the horrific act of violence committed on April 15. The world – his world, anyway – is still a peaceful place. Norrin’s innocence is preserved another day.

It was only a few weeks ago, we were standing in a crowd of runners, waiting for Norrin to run his first race. I was nervous then – thinking of what would happen if Norrin slipped out of my reach.

And when I see that Mister Rogers meme “Look for the helpers” shared and liked all over my Facebook feed, I can’t help but think of Norrin and other kids like him.

We live in New York City. My husband is training for the New York Marathon. I cannot keep Norrin sheltered. We are constantly in crowds, taking public transportation, living our day-to-day lives. We do not and will not live in fear.

But what would happen to Norrin if he was caught in the middle of such violence? Norrin may not understand what’s going on around him. Norrin has no sense of danger. He may not be able to tell someone his name, to say that he’s lost and needs help.

As a mother, my heart aches for the Richard family, and for the men and women of Boston. But I am in awe of the humanity and compassion that reveals itself during such a tragedy. I am inspired by their resilience to keep running.

Norrin may not know to look for the helpers in a moment of panic. But I have to have hope and have faith that the helpers will look for Norrin.