Posts Tagged ‘ Parenting ’

The Importance Of Talking To Your Kids About Disability

Wednesday, March 5th, 2014

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs  over at Atypical Familia (formerly of AutismWonderland).

I once asked a friend if her son knew that he has autism. “No,” she said, “We’re not that kind of family.” I left it at that because I understood what she meant.

Growing up we never talked about my sister’s intellectual disability. My sister’s original diagnosis was mental retardation and on the occasion my mother  referred to it,  she’d say, “She’s not retarded. She’s just a little slow.”

I can’t fault my mother for not being open about my sister’s disability. My mother’s of another generation. And my sister – who is in her mid-twenties – is quite “high-functioning.” She works part-time, she goes to the gym, she takes the train by herself.

The other day we were out for a family dinner – talking and laughing the way families do. And as my sister was telling me a story, she used the “r-word” to describe something she thought was stupid.

There are times when I hear it, I speak out against it. And there are moments when I let it go. But whenever the word is used in front of my son, I can’t let it go. I will not allow anyone to use the r-word in front of Norrin. I will tell them to use another word.

Hearing my sister use the word upset me and I couldn’t let it go. She used it in front of Norrin. She used a word that degrades herself and every individual with a disability. When I explained to her why I didn’t want her using the word, she apologized. “It’s just slang,” she said.

My sister believed it was slang because she was never taught otherwise. We never talked about the r-word at all in our house.

But the r-word is not “just slang.” It’s a slur. It’s a word meant to insult. In a recent Huffington Post article by John C. McGinley, he writes:

…however blithe the everyday practice of spicing up one’s speech with the words “retard,” “retarded” and the suffix “-tard” has become? The (presumably) unintended result is still the same. A population of people, who has never done anything to harm anyone, is circuitously targeted and suffers from a trickle-down discrimination that is very real and very painful.

My sister is a hard worker, she is a talented artist and she’s bright. She’s a young women worthy of respect, not ridicule. I wouldn’t want anyone to use the r-word in my sister’s presence and I certainly don’t want her using it.

My son Norrin doesn’t know that he has autism, he is not capable of understanding his diagnosis just yet. But we don’t whisper the word autism. One day, we will tell Norrin he is autistic. It’s not about being a certain kind of family. It’s about teaching him who he is. And teaching him to stand up for himself when he is being discriminated against.

Today is the day to Spread The Word – the annual day to raise awareness about using the r-word. I admire this online movement and those committed to taking the pledge. But awareness needs to begin at home. We need to talk about disability and the words that we use. We need to talk to them about respect for all. We need to talk to them about the weight of their words. Words are powerful weapons and like any other weapon, we need to teach our kids how to use them responsibly.

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Understanding Autism: Developing Social Skills
Understanding Autism: Developing Social Skills
Understanding Autism: Developing Social Skills

From my other blog:

 

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Caroline’s Cart: Shopping Made Easier For Kids With Special Needs

Wednesday, February 19th, 2014

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

Before I was a mom and before my son, Norrin, was diagnosed with autism I used to side eye the mothers who had their ‘too big’ kids stuffed into the seat of a shopping cart. I thought the kids were lazy and assumed the moms had no control. Now I know better.

I remember what it was like shopping with Norrin when he was younger and first diagnosed with autism. If I were with my husband, it was easier. If I was by myself, I’d either hoist him up and squeeze him into the shopping cart seat (knowing he had exceeded the limit) or struggle while shopping, holding his hand and navigating crowded store aisles.

Even now, at eight years old, we hold Norrin’s hand or stay close by. And those few seconds if/when he runs away and out of sight and I’m yelling his name scanning the aisles, are agonizing. I wish he could still fit in a shopping cart seat so that  I can run in and out without me having a heartache or him a meltdown.

The moment I saw Caroline’s Cart in my Facebook feed, I knew how important it was for special needs families. The cart was specifically “created for special needs children. It provides parents and caregivers a viable option to transport a child through a store while grocery shopping, without simultaneously having to maneuver a wheelchair and a traditional grocery cart.

Some of the features of Caroline’s Cart includes:

  • The seat back has a five degree tilt for increased comfort for low muscle tone children
  • The seat faces the caregiver, so eye contact is easy to maintain, children with anxiety issues can watch the parent during the shopping trip, and children prone to seizures can be monitored
  • The platform below the seat provides a footrest for the child
  • An abductor in the seat helps keep the child upright
  • A harness helps to secure the child so parents have hands free to steer the cart and shop

While Norrin doesn’t require the use of a wheelchair, we could still benefit from Caroline’s Cart. Sometimes shopping can be overwhelming for kids with autism. Stores are sensory overload – people talking, kids crying, loud speakers crackling, shopping carts banging into displays. Caroline’s Cart would be especially helpful while at check out. It can be difficult to keep an eye on Norrin while I’m  trying to unload my purchases and pay.

I haven’t seen Caroline’s Cart in any of my local stores, but I’ll be looking. And I want you to look too. If you don’t see it and you need it, don’t be scared to make a call or send an email. Because it never hurts to just ask. It worked for this mom, it could work for you.

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Baby Care Basics: When a Baby Has a Birth Defect
Baby Care Basics: When a Baby Has a Birth Defect
Baby Care Basics: When a Baby Has a Birth Defect

image: screen shot Caroline’s Cart

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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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How Moms Of Kids With Autism Can Reduce Stress

Tuesday, November 19th, 2013

Moms of kids recently diagnosed with autism spectrum disorder can get seriously stressed—but they have the power to control it, says a new study published in the journal JAMA Pediatrics. Researchers at Boston Medical Center worked with 122 mothers of children under six recently diagnosed with ASD.

About half of the group received six sessions of problem-solving education, a training that teaches how to use a series of steps to resolve an issue. If a mom felt lonely, for example, she might set a goal to spend more time with friends and ask a relative to babysit while her child with autism slept, reducing the chance of problems while she was out. The other group of moms received only traditional assistance—therapies and interventions for their kids.

At the end of three months, only 4 percent of the moms who got the problem-solving education reported significant stress, while 29 percent in the other group had anxiety—a major difference.

The researchers planned to continue to follow the families for nine more months, but were encouraged that an easy intervention had such significant effects. While there’s no word yet on how or where the rest of us can get the training, one takeaway for parents of kids with autism (or, really, any special needs) is remembering that no matter how hard life gets, we are capable of coming up with practical anti-stress solutions.

I remember the early days of my son’s life. Max was born in a super snowy December; the weather outside was gray, everything in the house seemed gray and my life seemed gray as well. For the first time, I was depressed. My mother regularly came to visit with my sister, who wasn’t yet married. The two of them cared for me, making me hot cocoa, doing my laundry and giving me breaks so I could dash to the store without hauling Max along. They brought brightness to my days. It’s not always simple (or possible!) to get help from friends and relatives, but it starts with asking. Even if you’ve always been a person who likes to be independent and do things on her own, ask.

If nothing else, brainstorm solutions with friends and families for things that are getting to you. Me, I was doing a whole lot of research into possible treatments for Max, and felt overwhelmed by it all. I mentioned this to a good friend; we decided that I would tell her what to look into, and she’d do Googling. Having her involved was both helpful and comforting.

Consider this: It makes people who love you feel good to help you.

Most of all, consider this: We can’t be good mothers for our kids with special needs if we don’t take care of our own needs.

From my other blog:

Holiday gifts for kids with special needs

One of the toughest parts of special needs parenting 

The homework that gave Max new perspective on ability

Image of woman sitting on beach via Shutterstock

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