Posts Tagged ‘ Special needs ’

Autism Is Not A Punishment From God

Wednesday, January 29th, 2014

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

Look at this child. Does he look like a punishment for anything?

Five years ago when my son, Norrin, was diagnosed with autism I went through a series of emotions. Anger for not seeing the signs sooner, depression due to so much uncertainty, loneliness because I didn’t know anyone else raising an autistic child and anxiety over navigating the special education maze. And while I may have even wondered whether I was to blame for Norrin’s autism – not once did I ever consider my son or autism a punishment.

Recently GOP candidate Susanne Atanus made a statement blaming autism (along with other diseases and natural disasters like tornadoes) as God’s punishment for abortions and same- sex marriage. When I read the article, my jaw just about hit the keyboard. I’m grateful Republican leaders strongly advised Atanus to withdraw from the congressional campaign as her beliefs “have no place in the modern political debate.”

I don’t want to get into a political debate because it’s pointless. Susanne Atanus’ statements are irrelevant and incorrect. (I am being very very kind.) But Atanus’ words are dangerous, insulting and hurtful to me and the entire autism community, as well as every woman who’s had an abortion and every gay couple wanting to marry. And if Atanus feels that way about autism, how many other people feel the same? It scares me to think that such ignorance could exist, especially within someone running for office.

When I first started telling people Norrin had autism, many expressed how “sorry” they were. I know people meant well, but I don’t want anyone to feel sorry for us. As I’ve shared my story people have asked if I wanted a cure for Norrin or if autism could have been prevented. And once a coworker referred to Norrin as “sick.” Autism isn’t a disease in need of a cure and Norrin isn’t sick. In fact, he’s probably one of the healthiest kids I know. There are so many misconceptions about autism as it is. Some I can shrug off but autism as a “punishment from God” is beyond insulting.

When I look at Norrin, I am filled with an overwhelming sense of pride and unbelievable joy. I recognize the progress he has made and how hard he was worked to achieve the milestones that come so easily to other children. He is my son and I have loved him since the moment I found out I was pregnant. And on the day Norrin was diagnosed with autism, my love for him did not diminish.

Norrin has autism. Yes we have our challenges and raising a child with special needs isn’t always easy. But it’s not a punishment. My son is not a burden. I have no desire to cure him. I love Norrin just as he is. And I want others to appreciate, understand and respect him for who he is. Norrin is my greatest achievement and I am so blessed to his mother. The only punishment we are burdened with is dealing with ignorant individuals like Susanne Atanus.

Norrin is my only son. And if I had to choose between having him – just as he is – or no son at all, I would choose him. Always.

 

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Nighttime Potty Training Your Autistic Child

Wednesday, January 22nd, 2014

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

It’s the third week of the New Year and my son, Norrin, just turned eight years old. One of our goals for this year is to begin nighttime potty training. When Norrin was first born, I never thought that potty training was something I’d still be thinking about by eight years old. But having a child with autism, I’ve had to learn to let go of time tables and ignore the milestones of “typical” kids.

Recently I was provided with a copy of Seven Steps to Nighttime Dryness and now that I’m done reading it, I believe that it’s time to begin. As with day time potty training, I already know what I need to keep in mind.

Like everything else in our autism journey, preparation is critical. Here are the 6 things I will need to begin:

Commitment. If I want Norrin to be successful, I need to be fully committed and consistent. This means, no more pull-ups. We just used our last one and I have no plans to buy any more.

Prepare/Protect the Mattress. We have a plastic cover over the mattress and then a water proof mattress pad on top. The plastic cover can be easily wiped down. I know a mom who used to add another layer of bedding so that if there was accident in the middle of the night, she could pull off the top layer.

Disposable Bed Mat. I purchased a pack of disposable bed mats to go under the sheets and over the mattress pad for extra protection. The ones I purchased come nine in a pack and have adhesive. You may also use washable bed mats.

Fitted Pajamas and Underwear. Along with the Seven Steps to Nighttime Dryness, I was sent a bedwetting alarm. The book suggests child wear fitting pajamas and underwear if you are using a wearable alarm. Make sure whatever your child wears to bed is something breathable and comfortable.

Reward System. Like all kids, Norrin loves to be rewarded. I really want him to feel proud about his accomplishments so I will give him a quarter (he likes coins) for every night he is dry. And at the end of each week we will take his change to the supermarket and he can use his money for the gum ball machine. Find something that really motivates your child.

Patience. It took us a few years for Norrin to achieve day time potty training, so I’m not expecting overnight success. I know it will be a process. I know there will be many nights of changing sheets and early morning laundry. But with everything else, Norrin has achieved – I am confident he will meet this milestone in his own time.

Have you had nighttime potty training success with your special needs child? Would love to hear about it!

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A Moment Of Gratitude While At The Thomas and Friends Show

Wednesday, January 15th, 2014

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

Last Sunday, we took Norrin to see the Holiday Train Show at The New York Botanical Garden. Our tickets included a chance to see the Thomas and Friends show. Norrin is a huge Thomas the Train fan. We talked about going. I showed him pictures. But still I was nervous taking him.

I will never forget the first time we took Norrin to a kid friendly live performance show. It was almost six years ago, around the time when he was being evaluated for autism. I thought Norrin would be so excited to see The Backyardigans. He wasn’t. It was a disaster. The longest ninety minutes of my life.

A few years later when we went to Disney World, we took him to see Jake and The Neverland Pirates (another favorite of his). After a few minutes, we had to leave. And the last few times we’ve gone to Sesame Place, Norrin has had no interest in watching the parade or seeing the shows.

But since we’ve had recent success with the movies, I wanted to give a live performance show another shot.

We knew that seating at the Thomas show was first come, first serve. We arrived early enough to be first in line. I was proud at how patiently he waited. The staff was friendly and patient. I loved that they handed out crayons and coloring pages to keep the kids busy while they waited. When it time to sit inside, I could tell Norrin was excited. He was smiling and fidgeting with eager anticipation. And when Thomas finally appeared – Norrin’s smile was priceless. He was star struck. He even sang along, clapped and answered questions.

Norrin with his dad watching The Thomas the Train Show

Looking around the small auditorium, I noticed Norrin was the only “big kid” in the room. Most of the kids were between three and four years old. Norrin will be eight in a few days. And I didn’t care in the least. Norrin was happy. I didn’t think to bring his noise canceling headphones and it was a little loud for him. But he sat through it.

Five years ago, I couldn’t see us sitting at a live performance show. I couldn’t see Norrin singing or clapping or getting caught up in an imaginary world. And it’s a reminder of how far Norrin’s come in the last few years.

Norrin still has challenges with many things. And at times, I feel like we’re at a stand still. But taking note of his progress reminds me progress is always possible. And I am grateful for these little milestones. They are often the things that keep me going.

What little milestones have you celebrated lately?

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Defending Jenny McCarthy

Wednesday, January 8th, 2014

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

Last week, my Facebook feed blew up with several articles stating that Jenny McCarthy’s son may not have autism. A few of the articles were recent, citing articles that dated back to 2010.

Maybe I’m still feeling warm and fuzzy from the holidays or maybe it’s because one of my New Year Resolutions is to be more understanding. Whatever the reason, I found myself feeling a little sorry for McCarthy.

I am not a fan of Jenny McCarthy. I don’t agree with any of her views regarding vaccines as a cause nor do I strive to cure my son, Norrin, of autism. Norrin isn’t on a special diet and he’s never seen a Defeat Autism Now (DAN) doctor. And when I heard McCarthy was going to be on The View, I cringed because (I think) she is the last person who should have an open platform to discuss autism awareness.

Autism moms either love her or hate her. Many pediatricians wish she’d keep her opinions to herself. I think Jenny McCarthy’s views on autism create fear and guilt. So why should I care if someone writes that McCarthy’s son may not have autism?

We cannot expect people to accept autism and be aware if we continue to challenge what autism looks like. Autism is a broad spectrum disorder and it looks different for every individual. And an autism misdiagnosis is not out of the realm of possibility for anyone- especially since the criteria has recently changed.

Back in November I wrote This Is My Son. This is Autism describing what autism looks like for us. Someone questioned whether or not Norrin really had autism. And it bugged me. I felt judged. I felt as if I had to defend my son’s autism diagnosis to this person who never even met him. It wasn’t the first time someone questioned Norrin’s diagnosis. People often ask me if I’m sure because Norrin looks so “normal.”  After five years, I’m quite certain my son has autism.

In response to the articles, McCarthy took to Twitter to justify her son’s diagnosis:

Evan was diagnosed with autism by the Autism Evaluation Clinic at the UCLA Neuropsychiatric Hospital and was confirmed by the State of California (through their Regional Center). The implication that I have changed my position, that my child was not initially diagnosed with autism (and instead may suffer from Landau-Kleffner Syndrome), is both irresponsible and inaccurate. 

I’m not a doctor and I’ve never met Jenny McCarthy’s son. I can’t say whether or not McCarthy’s son has autism or if it’s something else. And I don’t think anyone else should either. Not unless it’s a doctor or medical professional who has spent time with McCarthy’s son and reviewed all of his medical history and evaluations.

I don’t agree with anything Jenny McCarthy believes when it comes to autism, but I believe that her son was diagnosed. And I believe that everything she has done – whether I agree with it or not – has been because she loves her son. And I believe that if there was a misdiagnosis, she’s bold enough to speak out on it. But it’s not for the internet to decide.

Because no mother should have to defend or justify their child’s autism diagnosis. Not even Jenny McCarthy.

Has your child’s diagnosis ever been questioned?

image via: Wikimedia Commons

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New Year, New Goals For My Son With Autism

Tuesday, December 31st, 2013

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

 

 

If you have a school-age child with special needs you know about IEP goals. IEP stands for Individualized Education Plan; the goals are created to meet the specific educational needs of the child. My son, Norrin, has an IEP and I’m satisfied with his educational goals. But there are some other things that I know I need work. And not everything can be taught during the school day.

Norrin will be eight years old next month. In many ways, he’s a “typical” boy but in other ways, it’s tough. And the things that come easily for other kids and parents, requires more for us. These are three of things we’ll pay extra attention to this year.

Playdates. We don’t do many playdates. There just isn’t enough time but I really need to make more time to fit this in our schedule. Norrin doesn’t have many friends but he has an interest in other children and he wants to play. Play and forming friendships doesn’t come naturally to him. They are skills that need to be cultivated. I know they work on play skills at schools but I want to teach him how to work on friendships outside of the classroom.

How to Get Dressed. Norrin still requires a lot of help with self-help skills like dressing and bathing. He understands what needs to be done but he doesn’t always understand the sequence of steps. This year I want to work on helping Norrin pick out his clothes and putting items on the right way.

Night Time Potty Training. It took us a few years to potty train Norrin during the day. But at night, he still wears a pull-up. I really would love to get him night time potty trained. I know it will take time. I know it will take work and dedication. A few months ago, I received the book 7 Steps to Nighttime Dryness; I plan on following the steps and using a nighttime alarm to help us achieve our goal.

What goals would you like your child to work on this new year?

 

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