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?

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.

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!

Who World Autism Awareness Day Is Really For

Tuesday, April 2nd, 2013

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

It’s been almost five years since my son, Norrin, was diagnosed with autism. Before the diagnosis, I had no idea what autism was. What it really was. Growing up, I didn’t know anyone who had autism. And out of all my friends, I was the only one whose child had any kind of disability. I was scared and alone and no one could answer my questions. There was no one to offer any words of hope.

When Norrin was diagnosed in 2008, every 1 in 110 children had autism, a recent survey reveals that 1 in 50 school-age children have autism. In the last five years I’ve guided friends through the steps of having their children evaluated and diagnosed – giving them the insight I wish I had when we were going through the process.

I’ve learned that Autism Awareness goes beyond parents raising kids with autism. With autism becoming so prevalent – I don’t think anyone can afford to not be aware. This month is for you.

We live in a need to know society. I needed to know what autism was months before Norrin’s first evaluation.

If you’re the parent of a typical kid. You need to know what autism is because it can prevent bullying. Jill of Yeah. Good Times explains why in her recent post Everybody thinks it won’t be their kid.

Tell your kid that my kid likes to flap his hands, run back and forth, and talk to himself. Tell your kid that they might see this happening and feel uncomfortable because they don’t know what’s going on, and tell them that it’s okay to feel uncomfortable, and they can ask questions, but it’s not okay to make fun of him. It’s not okay to call him names, or point and laugh, even if their friends are doing it. Tell your kid that my kid does these things because it makes him feel good, and while that might seem weird, it’s totally okay.

If you’re in customer service, you need to know that some individuals need a little more understanding, patience and compassion – especially when they are on school outing. Because as Sunday of Adventures in Extreme Parenthood writes it is “during these instructional trips [that] our children are making strides to claim their rightful place among society.”

If you work in education – teachers, principals, psychologists or social workers, you especially need to understand autism because so many school-age children are undiagnosed and in general education classes. You need to know the signs so that you can help that child get the help he/she needs to be successful in the classroom.

If you’re in law enforcement, you need to know how individuals with autism communicate, you need to be able to read their body language.

Even if you’re not a parent of a typical kid, in customer service or law enforcement – you still need to know about autism. Leigh of Flappiness Is wants shoppers to stop staring at her son a because  ”every autistic child who has it, is different from the next.  Yet they do often share some similar traits – sensory overload and meltdowns are one of them.”

And if you’re a new parent – you especially need to know about autism. Because if you know the signs and have a concern. You can have your concerns addressed by a professional as soon you suspect your child has a delay.

Today is World Autism Awareness Day and April is Autism Awareness Month. Whoever you are, whatever you do – you need to know about autism. This is the day, the month to learn. And you can start by asking questions.

Join me – along with developmental-behavioral pediatrician Georgina Peacock, M.D., MPH, and board certified behavior analyst Patricia Wright, Ph.D., MPH - tomorrow for a Parents Magazine’s Facebook chat. We’ll talk about the early signs of autism, treatment options and services, and I’ll share my own personal experiences parenting an autistic child. Readers can participate in the chat by asking questions.

When: Wednesday, April 3

Time: 1 pm est

Where: Parents Facebook page

For more information please click HERE.

Check some of my other posts to raise Autism Awareness:

• What To Say to an Autism Parent
• “He Doesn’t Look Autistic” and Other Misconceptions
• How to be Friends with an Autism Parent
• 5 Things You Don’t Know About an Autism Parent
• No Need to be Sorry and Other Things You Shouldn’t Say to an Autism Parent