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The Fine Line for Autism Parents

Wednesday, March 13th, 2013

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

When Norrin was younger, before he was diagnosed with autism, friends and family used to make fun of the way I hovered around Norrin. “Bubble Boy,” my one friend liked to call him. And family would urge me to sit down, to relax and let Norrin be.   They all said, he was just being a boy – but he was a busy kid – constantly running around, getting hurt or into something he shouldn’t.

After Norrin’s diagnosis, I hovered even more especially when we were out visiting or in crowded places. When out walking – I never let go of his hand. I have this fear of letting go.

But Norrin is seven now and becoming more independent every day. I need to let go and let him experience things without me hovering behind him.

A few Sundays ago my husband, Joseph, decided to register Norrin for his first Road Runners Kids race. I was okay with Norrin running up until we got there and I saw the crowd. Street blocks filled with “typical” kids and their parents, music blasting and bitter cold winds. Naturally my mother hover instincts kicked in. As we waited I held his hand and put an arm over his shoulder. And every few minutes I kept asking if he was tired or wanted to go home. All he had to do was say the word and we were out of there. But Joseph was determined for Norrin run the race.

I wanted to keep Norrin “safe,” Joseph wanted Norrin to take a chance. This is the line we walk along constantly.

Like when we went to Sesame Place and Joseph insisted Norrin ride on the roller coaster. I thought it would be ‘too scary’ for him. Norrin loved it!

Or that time we went to the The Intrepid and Joseph took Norrin on the Gforce Encounter Simulator ride. We spent a good fifteen minutes arguing  discussing whether or not it was appropriate for Norrin. The thing was enclosed and went upside down. When Joseph and Norrin got on, I had to walk away. When the ride was over, Norrin stepped off with a huge grin wanting to “go again.”

And that Sunday, Norrrin ran his race and had a great time.

Thinking of all this reminds me of that Parenthood episode – the one where Max wants to run for student body president. Christina encourages Max to go for it while Adam thinks its a bad idea. Adam is scared because he assumes Max will lose. And when Max won, I was on my sofa sobbing like a baby.

All parents want to protect their children but when your child has special needs – your life sometimes revolves around wanting and needing to protect them. There’s a fine line between knowing when to hold on and when to let go. And that line becomes easily blurred. I’m grateful I have a partner like Joseph who helps me to see the line clearly.

Do you having trouble knowing when to hold on or when to let go?

Please tell me, it’s not just me.

 

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The Benefits of Animals for Kids with Autism

Thursday, March 7th, 2013

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

Recently there was a study on the positive results animals had on children with autism. And I know of many autism parents who have expressed that their kids have a special bond with their pets – usually dogs.

Our building complex doesn’t allow pets and Norrin doesn’t have much interaction with dogs. He’s terrified of them, actually. And on the occasion he sees one on the street, he tries to run away. Which makes navigating certain blocks of Manhattan interesting since every other person is walking a dog.

My husband and I have spent a great deal of time trying to teach Norrin about animals – it continues to be a work in progress. Norrin’s been around cats, dogs, ponies, birds and fish. And in each interaction, I’ve seen different things:

Gentleness. Last summer we visited an aquarium in Connecticut and we let Norrin enter the bid house to feed the birds. He was timid by all the birds flying overhead but he was laughing, giggling. But as my husband demonstrated what needed to be done, I watched as Norrin held out his hand to feed the bird. His other hand, still at his side. He knew that any rapid movements would scare away the birds.

Understanding. Norrin is scared of dogs. The barking, the sudden movements – make him anxious. But still, he is interested in them and he’s curious. My best friend has two dog and two cats and it usually takes a lot of coaxing to get him into the apartment. But after a while, Norrin gets used to the pets. He understands that they must all share the space while he’s there. Sometimes, he’s even okay if one of the pets get close to him.

Focus: A few weeks ago, we took Norrin for a pony ride – his first. The kid who refuses to get on the carousel got on a pony. And he LOVED it! I admit I was a little surprised. After a few laps around the stables, we came home – the rest of the afternoon, Norrin was so focused, so calm – able to concentrate. And now we’re thinking of looking into hippotherapy.

I don’t know what it is about autism and animals. Maybe it’s easier for autistics to connect with animals. I’ve read about that. Reading about the benefits about animals and kids with autism is one thing, seeing it is another. And to see it for myself is really special.

Have you seen a connection between your child and animals?

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AutisMate: A New App for Individuals with Autism

Wednesday, February 27th, 2013

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

A few weeks ago in an effort to get my seven-year-old son, Norrin, settled into a routine, we (our amazing therapist) created a visual schedule. It’s been so helpful for  us that I was thinking of creating schedules for other parts of our day – after school, bedtime, weekends. But I’m as crafty as Norrin’s therapist and it’s just one more thing on my never ending to do list. So when I was asked to review AutisMate, a new app for the iPad, I immediately said yes!

AutisMate is an iPad app that is designed to overcome the developmental challenges associated with autism by utilizing a more comprehensive, holistic approach that emphasizes the interconnected issues of communication and behavioral skills together.

Jonathan Izak, founder of AutisMate, collaborated with over 300 special educators, tech experts, clinicians and parents to create the app.  However, Izak, was inspired by his younger brother Oriel who is autistic and nonverbal. Empathetic to the frustrations individuals with autism may have, Izak describes his brother as “someone yearning to communicate with the outside world.” The AutisMate is designed to help alleviate those frustrations. More importantly, AutisMate can be personalized to suit individual needs and to grow with the user.

Within minutes of downloading AutisMate, I was immediately impressed. It is so user friendly and offers plenty of help along the way. The “My House” menu features several rooms in a house. One of the many cool things about this app, is that you can upload pictures of rooms in your own home to replace the default photos. You can also download additional scenes like “My Pets,” “Dining Room” or “The Park.” And since the AutisMate is GPS enabled – you can create your own scenes.

The Kitchen is one of my favorite rooms. Norrin likes to click on the hands by the sink – a video of someone washing their hands pops up.

We are really working on toothbrushing – this scene will be helpful for us. By clicking on the toothbrush a video pops up of a little boy brushing his teeth.

On the bottom right corner of each scene there is a  ”1 2 3 star” – by clicking on that, the visual scheduler appears – another of my favorite features! The “Brushing teeth” visual schedule even has a timer to show kids how long they should be brushing. After checking off each step, they work until they reach their reward (goal). Again, you are able to create your own visual schedules and customize it with your own photos.

The sentence builder will be especially useful for individuals who are not only non-verbal but for those who want to expand their vocabulary. By clicking on each picture, you can create a sentence and have the sentence repeated to you.

I’m not tech savvy at all, but this was easy enough for me to navigate and figure out. And I’m excited to create new schedules for Norrin and incorporate this into his daily routine. Norrin has been having fun with it too and the toothbrushing schedule and video is really helping us. This is something I could see us using for years.

The app is available via iTunes App Store for $149.99 and while it is on the more expensive side – it’s truly an investment and one that will grow as your child grows.

 

Disclaimer: I was provided with a complimentary app for review, all opinions are my own

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Shock Therapy For Students With Special Needs: Is This 1913 or 2013?!

Monday, February 25th, 2013

You may have seen the ABC News report back in November that exposed the Judge Rotenberg Educational Center in Canon, Massachusetts for using electroshock therapy on students who misbehaved. Disability advocates had been fighting the practice for years; now, massive public outcry ensued. This month, state officials are finally attempting to more closely regulate the facility—which is resisting.

Said an attorney for the Center, “There’s plenty of scientific evidence to support (the use of aversive therapies) and the court continues to approve the treatment.” He also noted the the only other alternatives would be restraint or large amounts of antipsychotic drugs.

The school, open since 1971, is considered a last-resort facility for youth with severe behavioral disorders, including extreme aggression and self-mutilation. It also houses children and adults with intellectual disability. Reportedly, this is the last school in the country using electric shocks as a discipline technique, which disability advocates have described as “state-sponsored torture.” There’s nobody regulating what sort of voltage is used; in fact, back in December the FDA sent a warning letter noting that the Center was using unapproved devices.

It’s mind-boggling that this sort of inhumane practice has been allowed to go on. Our understanding of how to help kids and adults with intellectual disability has come a long way in recent decades. There are ways to help control behavioral issues that do not involve frying someone’s limbs or brain. These are kids and adults with disabilities who are getting treated this way, not criminals. Hopefully, authorities will end the practice very soon.

Hearing about stuff like this as the parent of a child with special needs is a shock to the system. It reminds you that there are still people out there who consider kids with disabilities lesser human beings, ones who can only be controlled with cruelty. It reminds us that as parents, and bloggers, we need to continue to help the world understand who are children are—and why they deserve the same respect any child deserves.

Image: Flickr/otisarchives4

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When You Know One Special Needs Mom…

Wednesday, February 20th, 2013

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

A few weeks ago I went to a party. Now, it’s not often that I get to go out to a party on a Saturday night. And it’s certainly not often that I attend a party where I know no one other than the host. And as friendly as I am – I can be quite shy. I’m not good at walking up to strangers at a party and striking up a conversation. I can very easily hold up any wall.

But I really like the woman (another special needs mom who has been so helpful in my journey) who invited me and it was an opportunity to get out. When my husband dropped me off, I assured him I wouldn’t be home late. “I’ll be home before before eleven.”

I entered the apartment and kissed the host hello. I scanned the room even though I knew I wouldn’t recognize anyone. There were couples and clusters of friends in almost every corner. I poured myself a glass of wine and pretended to examine the art on the walls. (Thank goodness, my host had a beautiful collection to keep me occupied.)

A few awkward smiles and hellos to strangers later – I was ready to call it a night and be home in time to kiss my son Norrin goodnight.

Then my host started handing out stickers to some of the guests – on the stickers were 3 letters, “SNB” (Special Needs Board). It was a way for guests to identify other special needs parents. (Brilliant!)

Within minutes I was chatting with a couple whose son attended the same school as my son. Then I started talking to another  couple. By the time the party was in full swing – I was laughing with a group of women. All special needs moms. We shared our stories, exchanged advice, complained about the NYC school bus strike.

The thing I love about meeting another special needs mom for the first time is that automatic comfort level. The ability to have a conversation without having to stop and explain a term or acronym. That feeling that someone understands.

I had such a good time, I didn’t leave until close to midnight.

So the next time you’re invited to a party hosted by a special needs mom and you’re on the fence about going because you think you won’t know anyone. GO! Because if you know one special needs mom – you know a network of special needs moms.  And it feels good connecting with a network who gets you.

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