Posts Tagged ‘ autism ’

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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Toni Braxton’s Shocking Reveal Hurts Kids With Special Needs

Tuesday, May 27th, 2014

God gave Toni Braxton’s youngest son autism as punishment for an abortion she had: That’s what she believed, as revealed in her new memoir Unbreak My Heart. I was distracted and dismayed all Memorial Day weekend by the news reports. As Braxton tells it, per eonline, “In my heart, I believed I had taken a life—an action that I thought God might one day punish me for…. My initial rage was quickly followed by another strong emotion: guilt. I knew I’d taken a life…. I believe God’s payback was to give my son autism.” Her son Diezel is 11 years old.

Autism? A payback? In a few sentences that have spread around the world, Braxton is setting back the autism awareness that has been created in the last decade. This from a woman who Redbook magazine dubbed one of 10 Moms Who Are Changing the Face of Autism for the work she’s done through Autism Speaks. Braxton later told US magazine, “When my youngest son was diagnosed with autism I feared I was being punished for my earlier actions. I have since realized that my son is special and learns in a different way.” But the damage has been done. Braxton also mused over a connection between autism and the childhood vaccines her son received. Coincidentally, last week a meta-analysis of major studies came out that found no association between vaccine and autism.

Some bloggers responded to the abortion-autism connection; as Sara McGinnis said on BabyCenter, “I’m pretty sure revenge is not how the whole God thing is supposed to work.” At some Christian websites, they noted that Braxton’s use of Accutane may have been the cause for Diezel’s autism, not God. Other writers applauded her for speaking out on the “highly-debated topics” of autism, religion, and abortion. Yet many had the same reaction as I did: How could you claim autism is a punishment? As one Twitter user said, “What’s the punishment going to be for Toni Braxton’s stupidity?” Another site proclaimed, “Unbreak her brain.”

My son has cerebral palsy but it makes no difference: this kind of thing hurts all our kids. When I scanned the book, I couldn’t see anywhere where she refuted that punishment idea or explained why her son is awesome. So many people already pity my son and others like him with disabilities; Braxton’s words perpetuate the idea that children with special needs are tragedies—or, worse, lesser human beings. Some of us struggled with our children’s diagnoses early on, as I did. Even in my darkest hours, though, I would have never said that the beautiful boy with brain damage lying in my arms was “payback” for anything dubious I had ever done.

As parents of kids with special needs, we know they are anything but tragedies. We admire their successes, we swoon over their cuteness, we respect them, we see their abilities. You know, like any parents of any kids. We also do our best to instill confidence in them, bolstering their spirits to rise above their challenges and the prejudice they may face from others. To be sure, I completely understand what it’s like to want to share your feelings through writing, as I regularly do through blogging and as Braxton did in her book. Still: We owe it to our children, and their future, to help people see past dated, demeaning and hurtful perceptions of kids with special needs.

One of the commentors on Autism Speaks’ Facebook page says it best: “Are people like us (with autism) something to feel sorry about or cry for? Are our parents? Are we that bad, that behavioral or personal disasters? Are we not people? Aren’t we crying when people behave bad against us or the system fails to help us? I have Aspergers, a University education, and a complete life…am I not a human?”

From my other blog:

A note to the mom who glared at my child

15 superpowers of special needs moms

 

Image of Toni Braxton via Shutterstock

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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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Nighttime Potty Training: UPDATE

Wednesday, May 14th, 2014

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

Back in January, I shared that we were about to begin Nighttime Potty Training and I thought I’d give you an update.

Yeah. We’re not done yet. Not. Even. Close.

I’m going to be completely honest. My husband and I are at odds about it. I am ready to quit and just go back to diapers/Pull-Ups at night. And my husband is determined we stick to it.

I knew that it was going to take time and that I needed to be patient, but I am exhausted. I have washed sheets, blankets and pajamas almost every day since January. We are going on vacation in a few weeks. Is nighttime potty training something I want to deal with while at the most magical place on earth?

We’ve tried rewards, alarms, limiting liquids close to bedtime and waking up in the middle of the night. He’s just not getting it. Day time potty training and nighttime potty are two totally different things. And being successful during the day, isn’t always a guarantee for nighttime dryness. Going back to diapers at night doesn’t mean I’m giving up on my son. It just means I’m giving him more time.

Would love to hear your nighttime potty training updates!

From my other blog:

 

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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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