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

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

What To Say To An Autism Parent

Wednesday, January 30th, 2013

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

In the four years since Norrin’s autism diagnosis, I’ve heard lots of things. Some things have made me cringe, others have made me smile. A while back I wrote a post of things you shouldn’t say to an autism parent. The post sparked a lot of dialogue. Some parents totally got it. Others wondered what’s the right thing to say. Autism parents know that the “I’m sorry” response isn’t really appropriate but neither is “That’s so cool!”

The reality is, many people just don’t know what to say.  So the next time you meet someone and they reveal their child has autism – here are some suggestions:

Don’t be afraid to admit you don’t know much about autism. I didn’t know what autism was until I was having Norrin evaluated. It’s okay to ask questions. Questions are always welcome. And many autism parents are eager to share information and raise awareness. You can say something like, “I have a general idea of what autism is, but why don’t you tell me about your child.”

Ask to see a picture. If it’s one thing all parents have in common is that they love to show off their kids. Usually if I start talking about Norrin and autism, I pull out a picture. And like all moms, I love to hear how beautiful my son is and how much he looks like me. By asking to see a picture you can open up the conversation and ask questions. (So long as you don’t say, “He/She looks so normal…”)

Suggest a play date. Socialization is often hard for kids with autism. This is one of the hardest things for many special needs parents – trying to schedule play dates. Play dates with “typical” kids are great because it provides for peer modeling. So if your kids are around the same age and it’s possible, try to schedule an outing to the playground or a kids museum. And prior to meeting, ask them for book suggestions on talking to kids about autism.

Offer help/support. I know when people say “I’m sorry” it comes from a good place, they are concerned, they want to show they care. However, special needs parents do not want to be pitied. What they want and need is support. So be a friend to them. Ask them, “what can I do to help you?” or “how can I help?”

Let them know they are a great parent. Most parents doubt themselves at some point and special needs parents doubt themselves often. Once I was talking to someone about Norrin and she said, “I can tell you’re a great mom. Norrin will be okay because he has you for a mother.”

If you’re an autism parent – what words do you appreciate when you tell someone your child has autism?

A Kid With Cerebral Palsy Who’s Got The Spirit of the Season

Monday, December 24th, 2012

Jenna Martin, 12, knows what it’s like to be a kid in a hospital. Born at 24 weeks old weighing 1.7 pounds, she was eventually diagnosed with cerebral palsy. Jenna learned to walk with the help of staffers at Texas Scottish Rite Hospital for Children in Dallas through therapy, braces, injections and surgery. As she writes, “When I was in the hospital I looked forward to the day when the cart came around. On the cart were toys, books and kid stuff they gave to you when you were in the hospital and waiting to be seen by the doctor in the clinics. These gifts took my mind off the pain.”

This year, before she turned 12, her dad asked what she wanted as a birthday gift. Jenna decided she already had enough in her life and that any gifts she received she wanted to give to the kids at the hospital. And that’s when JJ&B’s Gifted Gifts Foundation Inc. was born. The non-profit’s motto: “We ‘gift’ back.” Earlier this month, Jenna organized two local drop-off locations for anyone who wanted to donate presents; check out this video about this amazing young woman.

You’ve gotta love what she’s doing, but it also makes you consider how empowering it must be for her to in turn help others—worth keeping in mind as a confidence booster for a child with special needs.

Live in the Dallas area and have gifts to share? Or want to send some along? Contact Jenna here.

Image: Screen grab/wfaa

Why You Shouldn’t Pity Special Needs Parents

Tuesday, March 13th, 2012

The other day, I read a piece on The Huffington Post about stuff people needed to know about special needs parents. The writer, Maria, mom to an adorable three-year-old boy with a chromosomal disorder, was candid and honest in the way that blogs tend to be. As a parent of a child with special needs, I related when she talked about how tired she got at times and how offensive she found words such as “retarded” and “short bus.”

I felt sorry for her by the time I finished reading what she’d written. I am sure many people felt similarly bad. It’s something parents of kids with special needs constantly contend with: extreme pity. I’ve seen that look—the cocked head, the “awwww” when I say that my son has cerebral palsy. “Wow, that’s tough,” people have said. “It can’t be easy for you.”

And it’s true: My life isn’t always easy. Sometimes, it’s pretty hard. That’s why it’s comforting to trade notes with parents who have kids with special needs. But what I don’t want is pity from parents of so-called typical kids. Pity means that I stand in an inferior position in life than they do. Pity means that I’m dealing with a tragedy. Neither thing is true.

And so, let me explain why you shouldn’t necessarily feel sorry for me and other parents of kids with special needs. Although if you’d like to take us out for mani-pedis and/or give us large chunks of money, that would be fine.

Don’t feel sorry for me because my life is tough. So, yes, I am like a human Google calendar, juggling a whole lot of therapies and doctors appointments for my son. But I am lucky that I’m able to get my son, Max, most of the services he needs. I push for what I can get from his school and our insurance company; I take on extra work to cover the rest. While parents of kids with special needs have financial hardships other parents don’t have, a lot of us discover resourcefulness, smarts and drive we never knew we had. We push and advocate and push some more for our kids. We become superheroes, able to leap tall buildings and fight the insurance company claims department in a single bound. While you are all still welcome to give us large chunks of money, one of the best things you can do if you have a friend with a child who has special needs is share resources. One of my good friends is always emailing me about activities for kids with special needs.

Don’t feel sorry for me because I’m not living the motherhood dream. Yes, things turned out differently than I expected. Max had a stroke at birth; until then, I thought only the elderly or the people who regularly consumed double-bacon-cheeserburgers had strokes. But you know what? My son brings me as much joy as any child brings a mother. Max has a younger sister, Sabrina. Both my kids make me laugh, both give me pride, both make me thankful every single day that they are in my life. So maybe I’m not living the Hollywood mom dream but a tear-jerker, this ain’t.

Don’t feel sorry for me because my child isn’t a “typical” child. Max may have disabilities but in many ways he is like other kids. I get the full range of kid-ness—the cute way he moves when he dances, the thrill of progress notes his teachers send home, the tear-my-hair-out moments of sibling rivalry. The whole shebang. I love this child. I wouldn’t want any other.

Don’t feel sorry for me because you think my marriage is suffering. Of course my husband and I quarrel. That’s because a) we’re human and b) we’re married. Sometimes, we argue about stuff my friends don’t necessarily quarrel about, like whose turn it is to program the speech app that my son uses. But  basically, we’re happy. That stat you may have heard about how the majority of marriages break up when there’s a child with special needs? Not. True.

OK, you may feel sorry for me because I have eleventy billion forms to fill out.

This is not to say that I never feel bad for myself. At times, I do, like when I have some fun family event or a restaurant outing planned and Max’s sensory issues get the best of him and he has a screechfest. Ah, I’ll think, why does it have to be this hard? Back when Max was a baby, I used to throw myself daily, even hourly, pity parties.

What I’d really like, though, is for you not to feel sorry for me. That way, you can see me as a parent equal,  and treat me the same way you do other parents. You can’t quite do that if you think I’m living an entirely different parenting existence than you are, or you feel that my life is sad. You can do that if you consider me just another parent, trying to juggle it all and stay sane.