Posts Tagged ‘ health ’

A Tough Love Moment In Autism Parenting

Wednesday, May 28th, 2014

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

The other day my friend was over when my 8-year-old son Norrin walked in and asked to use the iPad. I knew he had a mess in his room. I had spent the last hour asking him to clean up. There were sheets of paper and crayons all on the floor. I told him that if he wanted the iPad, he needed to clean his room. And that’s when he started to cry.

“I’ll help you Norrin,” my friend offered, starting to get up from the sofa.

“No. He needs to do it himself. He knows how.” I said.

Norrin kept crying and asking for the iPad. I kept saying, “No. Not until you clean your room.”

I could tell my friend was getting upset. She has a soft spot for Norrin. If it were up to her, she would have given him the iPad and picked up every single piece of paper and crayon herself. But I just kept talking, enjoying my visit with her.

I don’t like seeing Norrin cry (I hate every single second of it). And I certainly don’t like being the cause of his tears (makes me feel like the worst mother in the world). But I can’t give in every time he gets upset. He has to understand the meaning of “no.”

Was it easier to go in and help him clean? Or just let him leave his room a mess and give him iPad anyway? Of course it was. But how would he benefit from that? If Norrin was a typical kid, I wouldn’t allow the same behavior. I can’t expect Norrin to become independent, if I help him every time he cries for something.

I wasn’t asking Norrin to do anything I knew he couldn’t do himself. He knows how to pick up paper and throw them away in the garbage. He knows how to pick up crayons and put them back in the box. Norrin’s tears had nothing to do with autism. It was about him not wanting to clean his room.

So I let him cry. And as upsetting as it was, I knew Norrin wasn’t in any physical pain or in danger of hurting himself. Eventually he cleaned up his room and when he was done, I gave him the iPad.

It’s called tough love for a reason. It’s tough on kids and tougher on parents. But I know that my little moments of tough love special needs parenting will teach Norrin about independence and responsibility.

Catch up with last weeks post: 5 Tips for Traveling By Plane with Your Special Needs Child

From my other blog:

 

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5 Tips for Traveling By Plane with Your Special Needs Child

Wednesday, May 21st, 2014

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

In a few weeks, we’ll be on our way to the Most Magical Place on Earth. It will be Norrin’s second time on an air plane. Unlike the first time taking a plane together, I am not nervous. The first time we flew, I was frantic even though I prepped for months. But there was no need to worry. Norrin really surprised me and I was so proud of him.

Traveling with special needs children requires careful planning. If your child has never been on a plane and you’re thinking of planning a vacation – here are some tips that can help.

Prepare. Even if you don’t have any immediate plans for a trip, start talking about planes and pointing them out to your kids. Talk about the kind of places or family/friends you can visit by taking a plane. Many kids with autism and other special needs, require social stories to help them through new experiences or teach everyday skills. Carol Gray has written two books that may help: My Social Stories Book and The New Social Story Book

There’s also a really cool app by Avril Webster called Off We Go: Going on a Plane. The app prepares special needs children and also includes “some of the typical sounds that they would hear during their journey.” The Going on a Plane app is $3.99 and compatible with iPad, iPhone or iPod touch.

Do Your Homework. Think about the airlines and airports you’ve traveled with in the past – which ones gave you the best experience? If you have friends that have traveled with their special needs children – ask for suggestions. Call airlines and see what accommodations can be made for your special needs child before making your final decision.

Another thing to consider is the duration of the flight. If your child has never flown before, don’t book a 5 hour plane ride or one with multiple layovers. Keeping it under 3 hours is probably ideal.

Pack Light (if you can). Traveling by plane requires a lot of waiting and long lines. If you can manage to do carry-on luggage only – go for it! That way you avoid the checking in your bag line and waiting to claim your bag after.

Prepare some more. You want to keep your kid occupied for a significant amount of time so a bag of goodies is a must! Load up the iPad or tablet with new apps or buy a new toy or activity book for the ride. Bring candy or a special treat for your child to enjoy. And don’t forget to pack any other special items like noise-cancelling headphones or favorite comfort item, pillow or blankie. It could be the thing that prevents a meltdown.

And Speaking of Meltdowns. A mom wrote to me and expressed concern about her child having a meltdown on the plane. “Prepare for the worst, hope for the best” as the saying goes. If a meltdown occurs, deal with it the best way you can and forget about if people stare – just focus on your child. If you anticipate a meltdown prior to boarding the plane – talk to the flight attendants. They want to ensure you have a pleasant experience, so do not be afraid to ask for help if you need it.

From my other blog:

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Should Special Needs Moms Have Their Own Mother’s Day?

Wednesday, May 7th, 2014

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

With Mother’s Day approaching and Father’s Day next month, I am reminded of something my friend, Jessica, posted on Facebook. Jessica was having one of those up-and-down days only a special needs parent can understand. The mom of three kids, Jessica’s 9 year-old son has autism.

As I direct my son to pick up his chewed up and spit out pretzels from around the house for the umpteenth time today and have my sleeve tugged on yet again before I prompt him to tap and say excuse me, and hold him tightly to get him to stop hitting his own head, and then bathe in the sweetness of his beautiful smile when he tries to climb his 9 year old sized body into my arms, I do believe there needs to be a mother’s day specifically for moms of kids of special needs. Yes…parenting all kids is challenging. But sorry folks, on a day to day kind of level, it’s just not the same thing.

I don’t like to play the “hardship olympics.” But when I think about all the ways parenting a child with special needs is different…it makes my head spin. At the same time, I am still a mother and I’m celebrated on Mother’s Day.

I reached out to other special needs moms for their thoughts on whether or not special needs parents deserve their own day. Here’s what they had to say:

…Sometimes you feel like no one in your life acknowledges how much extra effort you have to put into everything, how much has been handed to you that you’re not able to do, and all the additional worries you have about your child’s future. It would be nice to have a day set aside to acknowledge that just once. [But] I don’t want my kids to feel that their differences are a reason we should be singled out as a family, whether it’s them or me. I am still trying to learn how to walk the fine line of celebrating what makes us unique and not focusing too much on what makes us different. — Jessica, Don’t Mind the Mess

I have mixed feelings on this. I do think we deserve props for all that we do as special needs parents–and we do a LOT. And then some! But I hesitate because there are times when I feel a gap between me and parents of typically-developing kids, and I’m not sure I’d like to further distinguish ourselves. One thing’s for sure: Our families should totally kiss up to us on Mother’s Day–and Father’s Day too! — Ellen, Love That Max

Being a mother to children with and without special needs, I definitely believe we deserve a day of our own. As a special needs parent you are faced with so many obstacles. A simple trip to the local park requires special planning and strategizing. A special needs parent has very little ”me” time. I think it would be great if there were a day to celebrate our hard work and accomplishments. — Lizette, Diary of a Loving Mom

I do not think it is necessary. We already have a general mother’s and father’s day. Let us continue to celebrate [special needs parents] in our own unique ways. There is really no need to have separate days. Right now my son can’t tell me I love you or Happy Mother’s Day, so I have to think outside the box on Mother’s day and remember that he loves me regardless. – Kpana, Sailing Autistic Seas

Whether or not you agree, this Mother’s Day (and Father’s Day), be extra nice to the special needs parent in your life. April was Autism Acceptance month – a time to raise awareness and acceptance for individuals with autism. Special needs parents need acceptance too. Just like we celebrate our kids for all that they do, sometimes special needs parents require the same recognition from their family and friends.

From my other blog:

Tell mom you love her this Mother’s Day with an “I Love You” bookmark.

Life With Down Syndrome
Life With Down Syndrome
Life With Down Syndrome

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Birdhouse For Autism: An App To Make Autism Parents Life Easier

Wednesday, April 30th, 2014

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


I bet you have a calendar where you write everything down. Phonebooks, memo pads, notebooks or scraps of paper with scribble on it. When you’re an autism parent, your life is all about keeping track of progress, meltdowns, bowel movements and sleep cycles. You have countless appointments and therapists numbers to remember. I know I do and no matter how organized I try to be, I still don’t have everything in one place. As a mom constantly on the go, it’s impossible to have Norrin’s information accessible to me at all times. And to be really honest, I can barely remember  the  passcode to  my iPhone –  I need everything written down or else I’ll forget.

I just downloaded Birdhouse for Autism; it’s an app that “keep[s] a running, searchable log of your child’s daily activities and behaviors, so that you can figure out what’s working and what needs to be changed.” The app was created by autism parents, Ben Chutz and Dani Gillman.

“We needed a better way to manage and organize all this stuff, and it was apparent to us that many, many other families needed a better way as well,” said Ben.

Unlike any other app, Birdhouse for Autism you can monitor your child’s day-to-day progress. Accessible via iPhone, Android or the web, parents can view and track their child’s sleep cycles, diet, bowl movement, moods, medications and any other information you’d like to note. You can also keep track of your therapists information, including how long they have worked with your child.

“In its current version, Birdhouse works best for families who are already in the habit of keeping some type of notes on their child’s day to day progress, or who have something that they are paying special attention to in their child. For example, one family was able to get a referral to a neurologist from her child’s pediatrician by tracking her sleep cycles. Another family used Birdhouse with their son’s special education teacher to build a case for the IEP meeting that her son be relocated to a classroom better designed to suit his needs.”

There are two types of memberships: free and premium. You’ll need to create an account on a full size (desktop/laptop) browser prior too using Birdhouse app. The free membership only allows you to log/track the current day but weekly progress must be viewed via web. The premium membership allows you to have all your child’s information on your phone and allows you to share the information with up to 3 other individuals. What makes premium membership especially unique is that it’s a “name your own price.” Families pay either $1 to $20 per month for the Birdhouse for Autism app.

I am excited about the Birdhouse for Autism app because I’ve been thinking about medication for Norrin. I know the app will make it easier to monitor. All of my information will be neatly and safely stored in one place that I will be able to access any time I need it.

Have you used the Birdhouse for Autism app? Would love to hear what you use it for?

From my other blog:

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Spreading Awareness, Acceptance and Making an Autism Fashion Statement

Wednesday, April 23rd, 2014

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

Over the weekend I attended an Art for Autism Fundraiser and I got to meet Nell Escalante for the very first time. Nell is an art/museum educator, DIY fashion redesigner, blogger and an autism mom. Both of Nell’s sons – ages 11 and 7 – have autism and are “on opposite ends of the spectrum.” Nell’s older son is “high-functioning practically Aspergers” while her younger son is “non-verbal, super active [and has] sensory issues.”

Nell and I have been on line friends for a few years and I wanted to support her as well as the other local Bronx artists. She donated three of her designs (see above) to the fundraiser. Nell’s “If They’re Gonna Stare” collection was inspired by her younger son. “I get a lot of stares when I’m with [him]…so I figure, if they’re going to stare might as well make it worth their while and look good,” she said.

But Nell didn’t always combine fashion with personal experience. When she initially set up her Etsy shop and blog back in 2008, she admitted to being “overwhelmed with autism talk and needed a space to be just Nellie.” While she never hid her sons autism, Nell knew she didn’t want autism to be “at the forefront of [her] blog.” Among her friends, Nell was known as “the Autism Mom” and felt like she was losing her identity.

“I wanted [my] blog and my shop to give me a voice. The voice of a woman, an activist, a lover of fashion, a creative being, a designer, a mom. But not an autism mom.”

After a few years, Nell realized that her journey was important and that being an autism mom was as much of her identity as everything else. It was through art and pursuing her own passions that Nell was able to come to this awakening. And now she encourages other mothers to continuing doing what they love to do because it will be thing that gets you through.

“When I went back to art…I became a better mom, a happier mom. Art saved my life. You don’t have to be a martyr to be a good mom. Autism is transformational, if you let it, it can make you better, not bitter.”

 

From my other blog:

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