Posts Tagged ‘ Special needs ’

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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7 Fun Tips For Kids With Autism During the Holiday Break

Tuesday, December 24th, 2013

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

School breaks are always a bit of a challenge for our family, especially during the cold months of winter. It’s Christmas Eve and Norrin doesn’t return to school until January 6th. School breaks for kids with autism or any other special needs are tough because they are taken out of routine. And as a working mom, it leaves me scrambling for ideas. I want to keep Norrin busy but I also want him to have fun. Here’s what I have in store for the break:

Clean Out the Toy Bins. A new year is upon us and I say: out with the old and in with the new. This is a great time to clean out bins and closets and reorganize your child’s room. Get your child involved in the task if you can. Make three piles: toss, keep and donate. I love donating Norrin’s toys to his school or therapists – especially if it’s an item that really helped Norrin. It’s also a great way to teach him about sharing. And it’s fun for Norrin because he likes seeing all of his toys – I allow him to help organize his room.

Schedule a Play Date. Now that the holiday hustle and bustle is winding down, schedule a play date – even if it’s just a quick meet up at the playground or library. We don’t do play dates often, but I’m hoping to squeeze at least one in over the next two weeks.

A Special Outing. Is there a museum you’ve been wanting to visit? A movie you’ve been wanting to see? Maybe ice skating or a trip into the city? Go out and have an adventure! Take a chance and try something new with your child.

Get Crafty. I am not a crafty mom. At all. But I just discovered Kiwi Crate and ordered a craft for Norrin. I am really excited because the ‘crate’ comes with everything we need! But if you want more ideas, check out these easy crafts for kids – they’re all made using everyday items found in your home.

Cookies & Hot Chocolate. What warms up a cold winter day better than freshly baked cookies and creamy hot chocolate?! My friend Ruby has some great cookie baking ideas and an amazing peppermint hot chocolate recipe. This is on the menu for Christmas day.

Lazy Couch Potatoes. I love a lazy afternoon. I can’t wait to just snuggle on the sofa with Norrin watching movies (probably Polar Express, The Little Mermaid and Despicable Me 2), eating cookies and sipping hot chocolate.

Work on a Skill. School breaks have their pros and cons but one of the pros is not having to rush in the morning. We’ll have time to get ready at our leisure and Norrin can work on dressing himself with little to no prompts. Also, over the break, I plan on bringing Norrin into work with me at least one day. While we’re out of the apartment, we’ll work on independent public bathroom skills. I’ll make it fun by rewarding him for a job well done.

What are your plans during the holiday break?

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Kids With Autism And Holiday Parties: 6 Tips That Will Help

Wednesday, December 18th, 2013

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

Chances are if you invited me or my kid to a party, I’ve declined your invitation. It’s not that we don’t like parties, cake or good company, it’s just that parties are hard – especially holiday parties. My son, Norrin, has autism and parties are sensory overload for him. He’s great one on one, but put him in a room with more than two kids and he’s off in a corner by himself. As for me? I am not the mom who can chat while glancing over at my kid. I am right beside him, the entire time. So when it’s me and Norrin at a party, it’s me and Norrin at a party.

Yesterday was my department holiday party. Some years I take Norrin. Some years I don’t. I wasn’t planning on taking him this year but since it snowed and since his school was cancelled, I felt like I had no choice but to take him. I’ve been at the same company for almost ten years. He’s quite familiar with my office and coworkers. But the holiday party is a different atmosphere. There are spouses and children, music and movies, cakes, candy and balloons. I love my coworkers and they are really good with Norrin. But we still had our challenges and I left with mixed emotions.

Earlier this week, I read an article about including kids with autism in holiday parties. The author, Kathleen O’Grady, made some really great suggestions including how to start a conversation. O’Grady suggested that conversation be prompted with a statement rather than a question. Questions “can be like an exam for some children with autism. If they fail the first question, the conversation is over before it starts.”

The two questions that confuse Norrin the most are: How are you and How old are you? When asked over and over again in an overwhelming situation (like a party), he shuts downs and stops talking. But if you talk to him about what he’s drawing or what he’s looking at – he’s more likely to engage in a conversation.

Yesterday was a learning experience for me and these are The Lessons I Learned After Taking My Autistic Son to a Holiday Party:

Arrive early. Most people like arrive fashionably late for parties. Not me, I like arriving right on time when I’m with Norrin. It allows us the time to familiarize ourself with the layout and the opportunity for Norrin to get comfortable in a new environment. Norrin was the first child at the department holiday party, he got to have his party experience at his own pace without a crowd of kids. By the time all the kids arrived and it became too much, I didn’t feel too bad about leaving before the party ended – Norrin had his fun.

Don’t be scared to ask for accommodations. My department had transformed a conference room into a “Gingerbread” craft room for the kids. Inside they played the Frosty the Snowman movie. Norrin is terrified of Frosty. When I tried to get him into the room, he threw himself on the floor. I didn’t want to ask them to turn off the movie for Norrin’s sake so I had to run into the room, grab a gingerbread man and run back out. Later, when my coworkers asked if Norrin enjoyed the craft room, I explained that he didn’t go in because he was scared. Everyone I told this to, said I should have asked for the movie to be turned off while Norrin was in the room. Next year, if Norrin is still scared, I’ll ask.

Be prepared. Take an extra change of clothes and underwear, just in case. Norrin will be eight next month and he’s fully potty trained during the day. But when he’s excited or over stimulated, he rushes through things. I’ll leave it that, you get the point.

Find a quiet area. Parties can be overwhelming for almost everyone. Find a quiet space to rest for a few moments. When things got to be too much, we returned to my desk where Norrin could sit and play on his iPad for a few minutes before returning to the party.

Put things in perspective. Parties are tough for several reasons. And being around “typical” kids, is one of them – at least for me. Norrin is an only child, autism is all I know. Most days it’s easy to forget. But when I’m around typical kids, I’m reminded of how different Norrin is. I’d be lying if I said it didn’t hurt. I watched as the other boys his age, formed friendships with ease, running reckless around the office. Norrin stayed by my side the whole time.

Norrin may not have ran around with the other boys, but he was gentle with the little ones and was able to share. Norrin didn’t go into the Gingerbread room but he sat still to have his face painted (something he refused to do a few years ago). And many of coworkers talked about how well behaved Norrin was, how big he’d gotten, how much he was talking. They recognized the progress he’s made. And I recognized it too.

Keep trying. Parties are hard for us. But it’ll never get easier if we constantly decline invitations. Like everything else in our lives – parties take practice.

Do you take your kids to parties? How do you manage? Would love to hear your suggestions!

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Sensory Integration and Kids with Autism

Wednesday, December 11th, 2013

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

Ever since my seven-year-old son, Norrin, was diagnosed with autism, we’ve had an occupational therapist in our lives. They’ve helped us with everything from handwriting to buttoning clothes to riding a bike. Norrin has had occupational therapy in our home, at school and at a sensory gym. Sensory integration has always been a part of his occupational therapy sessions. And Norrin’s therapists have always suggested we follow a “sensory diet.”

Sensory Integration Disorder is considered a neurological disorder that results from the brain’s inability to integrate certain information received from the body’s five basic sensory systems. These sensory systems are responsible for detecting sights, sounds, smell, tastes, temperatures, pain, and the position and movements of the body. 

I came across a recent article on Disability Scoop about, “a study published in the Journal of Autism and Developmental Disorders suggests that [sensory integration therapy] can reap meaningful gains [for kids with autism] in significantly less time than the 40 hours per week often recommended for traditional behavior therapy.

I’ve had some education professionals dismiss Norrin’s need for occupational therapy. Once a child enters the public school system, the more difficult it is to retain related services. And many public schools (at least in New York City) do not have rooms dedicated for occupational therapy or OT equipment. Once a friend (who has a pretty high position at the NYC Department of Education) said that occupational therapy didn’t academically help kids with autism, it just made them a more ‘well-rounded person.’

Well I beg to differ! I’ve seen the difference sensory integration therapy and the right sensory diet can make. I’ve seen how much calmer and focused Norrin is after an hour of swinging or a few minutes of a brush massage.

Roseann Schaaf (occupational therapist and neuroscientist who conducted the study) said, “By changing how sensations are processed and integrated by the brain we help children with autism make better sense of the information they receive and therefore use it to better to participate in everyday tasks.

I feel so positive about this study. Currently, ABA is the only the therapy that is scientifically proven to help kids with autism. A study suggesting that sensory integration therapy can be equally, if not more so, for kids with autism, can only help.

What do you think? Has your child had sensory integration therapy?  What improvements (if any) have you seen?

 

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