Archive for the ‘ Children With Special Needs ’ Category

Board Games and Kids with Autism

Friday, December 19th, 2014

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

 

Christmas is next week and I still haven’t bought a single gift. I should probably get started on that because my son, Norrin, has a really long list. Anyway if you’re a last minute shopper like me and you have a kid (or kids) with autism on your list, you may be wondering what you should get.

Norrin is 8 and we’re really focusing on more age-appropriate play, like board games and video games. While we love video games and introducing Norrin to the latest tech for kids, board games are just as fun and important to his development.

The two major benefits of board games:

It’s cost effective. Most board games range from $10 – 25. You don’t need the internet or have to keep purchasing games to play. A board game is a one-time price.

Great for social skills. Playing a board game requires turn taking and conversation.

Here are 10 board games we play with Norrin that he loves:

Don’t Break the Ice. Always on the top of our list for gift suggestions. We’ve had this game for years and Norrin still loves it! It’s great for work on those motor planning skills.

Zingo! [by Think Fun] I love playing Zingo with Norrin. We have Zingo! and Zingo! Sightwords. But there’s also Zingo! Spanish, Time-timing, Spanish and 1-2-3. What I love most about Zingo! and Think Fun games are that they incorporate learning into the fun. It’s a game with a real purpose.

Candy Land. I loved playing Candy Land as a kid and I love playing it with Norrin. This game is great to teach kids about following directions.

Whac-a-Mole. We play this when we go to the arcades and it’s fun playing at home too.

Hed Bandz. We have the Disney version of this game and Norrin gets a kick out of it. I like that we can work on our WH questions.

Scrabble Jr. I have regular Scrabble nights with my friends and Norrin enjoys watching us play. We decided to buying his own board and while some of the rules of Scrabble are still a little complicated, I like that we can work on spelling.

Connect 4. Norrin loves playing Connect 4 but what he loves more is watching all the pieces fall.

Mouse Trap. We recently received this as a gift from one of Norrin’s therapists. Norrin was beyond excited about it and I’m looking forward to him teaching me how to play.

Hungry, Hungry Hippo. Another game I loved as a kid that I get to play again Sometimes I even let Norrin win.

Social Skills by Didax – This is the only game we we do not own but it’s on our wish list! I feel like this game is made specifically for kids with autism. “Each game has players discuss the solutions to socially challenging situations. Together the group decides upon the best action encouraging all players to communicate, listen and participate in the game.”

Now that you have the game suggestions, here are a few things to keep in mind before purchasing:

  • Is it appropriate? Don’t think about the age on the box – think about the functioning level of the child.
  • Are the pieces too small? Could it be a choking hazard?
  • What can the child get out of it? I am all about toys with purpose. Whenever I buy toy, I think about the child and what they can learn/gain by playing with it.

What are your favorite board games to play with kids?

And from my other blog:

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13 Holiday Tips for Special Needs Parents

Thursday, November 20th, 2014

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

Another holiday season is upon us. And holidays mean family gatherings, parties and shopping – it is sensory overload. Having a kid with autism this time of year can be challenging. But over the years it’s gotten easier for us and I’ve learned some things along the way.

Today I’m excited to share 13 Holiday Tips for Special Needs Parents from Cara Koscinski, occupational therapist and author of  The Pocket Occupational Therapist Book Series.

Shopping

  • Allow children who are overwhelmed by sights and sounds of shopping to stay home. Allow kids to have a pajama and movie night while you’re shopping.
  • If a child must attend the shopping trip, schedule downtime or breaks for children to de-sensitize. This can be located in the car with some crunchy snacks, a weighted blanket, and some calming music.
  • Encourage children to make a list of preferred toys well in advance.  Give family lists of toys to choose from.  I even purchase the toys my children will enjoy and provide them to my local family members ahead of time.  We sometimes have a “trunk sale” and everyone chooses which give they will buy and wrap for my boys.

Family Photographs

  • Go at a time of day when children are well-rested and not hungry.  Do not rush and arrive early.
  • Write a letter or speak to the photographer ahead of time.  Most studios will schedule extra time for children who have special needs.  Request a photographer who is patient.  If possible, schedule a photographer to visit your family outside of the studio.  We have found that this may be a more affordable option than a studio because of low-overhead costs.
  • Be flexible.  Consider that “fancy” clothes are often scratchy, have tags, and may contain textures that aren’t familiar to children.  Permit the child to wear comfortable versions of colors that you’d like the family portrait to have.

Visits with Santa

  • If children do agree to see Santa, create a social story with pictures of Santa, including his beard, velvet/soft red suit, and the setting in which Santa will be located.  Go to the location prior to the visit and watch other children.  Practice, practice, practice!

Family Gatherings

  • Create a “safe-zone” to which the child can go whenever they feel overwhelmed.  Set a password or sign that your child can use to excuse himself.  Place a bean bag, calming music, a heavy blanket, and favorite hand fidget toy in the area.  Practice ahead of time.
  • Create a letter to family members prior to family gatherings to explain your child’s wonderful progress toward goals and suggestions for conversation topics. For example: “Joshua’s had a wonderful year in therapy.  He’s learned how to tie his shoes, take one turn during conversations, and how to write in cursive.  Joshua likes Angry Birds.  Here’s a link to the Angry Birds’ website if you’d like more information.  Please know that even though he’s not looking directly into your eyes, he IS listening to you and loves you!”
  • At mealtime, make sure to serve a preferred food so that children who have feeding difficulties can successfully participate.

Holiday Parties

  • Give kids a job to do so that they will have a sense of belonging and success.  Even something such as helping to create place markers for seating or setting the table can give kids a feeling of accomplishment.
  • Remember that heavy work is generally calming.  Include activities such as moving chairs, picking up and placing dirty clothes into a basket and carrying it to the laundry room, or vacuuming are great ways to encourage children to help to prepare for the party.
  • Plan an “out” or an escape plan.  Even a short visit that is successful can create memories that last a lifetime!

The Holidays are meant to be fun. Enjoy them with your family!

And from my other blog:

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If This Is The Future Of Plane Travel, Special Needs Parents Are in Trouble

Thursday, November 13th, 2014

This is the saga of my recent experience with American Airlines. I’m sharing it because I believe it illustrates the need for reform in how special needs families are handled. And because I snagged a secret phone number that could help other special needs parents.

The first sense I had that something was wrong came on Sunday night, when I called to check on seat assignments for our Florida vacation in December. As the American Airlines staffer reviewed our family’s reservation, she noted that our flight home on January 3 was at 9:00 p.m.

What?! We had originally booked a return flight for 11:50 a.m, then received an email that our flight switched to 3:00 p.m. But we had not been notified that it changed again, and that posed a serious problem. My son, Max, who has cerebral palsy, is prone to seizures when he gets tired. A flight arriving after 11:00 p.m. was out of the question.

I had to get off the phone to tend to the kids, but once they were sleeping I called back. After waiting on hold for 1 hour and 40 minutes, I hung up, called again and got a supervisor on the line.The choices he gave me: 1) Cancel the tickets, for a full refund (not a great option—getting a reasonably priced fare at this point for the holidays seemed unlikely); or 2) Book a return flight home at a different airport, an hour further away from our home. Max sometimes gets car sick, so that seemed like our last resort. As we spoke, I grew increasingly distraught. “So who at American Airlines will be helping if my son has a seizure on that 9:00 flight?!” I asked. Said Mr. Irving Hall, ever so calmly, “Ma’am, you are responsible for your son’s medical care.” He was perfectly correct, of course, but it only upset me more.

I had trouble sleeping that night. Air travel with a child who has disabilities or a medical condition can be complicated and nerve-rattling enough, without feeling like nobody at the airline cares. The next day, I called another supervisor. She suggested that I could call daily to see if other flights opened up. Because I do not have enough calls in my life to make for my child with special needs.

Meanwhile, I started sending out disgruntled tweets. The AA account responded almost immediately, offering to help. At one point, I got this promising message:

Aha! I called AA’s general reservations number and asked to be connected to the Special Assist Desk. The staffer put me on hold. “They won’t talk with you until it’s closer to flight time,”  she said when she got back on the phone. WHAT?! Nobody at the Special Assistance Desk could hop on the line to reassure a freaked out special needs mom?

Exactly.

No parent is ever pleased to have vacation flights messed up. But having a handle on travel plans way in advance is especially critical for parents of kids with disabilities (as well as people with disabilities). We need to know about airport and plane conditions, get answers to questions—and get peace of mind.

I sent an email to media relations, asking for input. I got a call from customer service rep Janna Pendley. When I asked why we hadn’t gotten a notice about the flight schedule change, she said that not every passenger liked to receive those updates. In fact, she informed me that my flight had changed eight times since we’d booked it in March; little had I known when we booked a ticket that we’d be playing Russian roulette. American Airlines and US Airways were merging, leading to a lot of flight changes. I pointed out that if I had gotten a notice at the time the flight changed (10 days before), I could have jumped on the phone and attempted to find an earlier flight. She said she would pass along my concerns.

AA’s media relations never did respond to this question: “How, exactly, does the Special Assistance Desk work with assisting special needs families concerned about flights if they will not get on the phone with them?”

I finally decided to shorten our vacation by one day so we could get a better flight, and called to change the reservation. Then I received my confirmation by email. The agent had, inexplicably, dropped me from the outgoing flight. So now my family was on a flight to Miami, but I wasn’t. I called. Thirty minutes later, an agent said I was all set. I asked her to go over our reservation. My husband and kids no longer had seats on the return flight home. After we hung up, I logged onto the website to double-check. The kids were listed as adult passengers. They were kids when we booked the trip, and they still are. I didn’t have it in me to call and correct this.

Of course, the flight could still change. And AA may or may not let us know.

American Airlines’ site notes, on its Accessibility And Assistance for Customers With Disabilities page, “American and American Eagle want every customer to enjoy flying as much as we do.” Um, right. After you nearly die from heart palpitations about your reservations.

To be fair, I gave other major airlines a test call. Terry picked up at Delta’s Disability Assistance hotline (404-209-3434, 24 hours a day). Every special needs parent planning a flight should have Terry in her life. I asked what the desk could help with, and it was similar to the services AA offers as stated on its Planning Ahead page—once a passenger was ticketed, the department could assist with special seating, service dogs, electric wheelchairs and other services related to ADA regulations. But Terry—a warm, friendly, live human being who’d been on the job for years—was more than willing to answer any of my questions about special needs travel and lend insight. I could even call Disability Assistance and they would book the tickets for us, he told me. “We can handle it all, from start to finish,” he said, adding, “I wear so many hats, I could use a hat rack!” At some point, I mentioned a problem we used to have when Max was younger: He’d repeatedly kick the back of the seat in front of us. Terry had handled similar concerns with other passengers. He said they could seat families like that on the bulkhead on certain flights, or in seats with extra leg room. I thanked him profusely when I hung up. “We handle disability requests better than any other carrier, and we’ve been awarded for that too,” he said, proudly.

Next, I called United Airlines. Within two minutes, I was on the phone with Kimberly, at the 24-hour Disability Desk (800-228-2744). I told her I had no reservation, just some questions. I didn’t even give my name. Like Terry, Kimberly was glad to share input before I had a ticket, and also chatted with me for 10 minutes. Typically, she makes disability accommodations after seats are booked. When I mentioned the kicking-the-seat problem, she noted,  “A lot of parents tell me they book seats so one parent is sitting ahead of the child who kicks.” Once again: Real, human, comforting guidance.

It seems that American Airlines is very helpful once travel plans are in place. One mom of a kid with autism tweeted, “I found them very accommodating on our last flight.” And a woman with cerebral palsy messaged me to say, “Just for the record, I’ve had great service from American so far, in fact their special services department called ME to ensure a good trip.” That bodes well for our flight, but does not excuse the wringer I went through.

Ultimately, schedule changes happen with every airline (eight times seems just a wee bit excessive). Long call waits happen with every airline (1 hour, 40 minutes seems just a wee bit long). Ticketing mistakes happen with every airline. But as a special needs parent with a real concern about her child, the lack of consideration and support I experienced with American Airlines seems so wrong. The scheduling problems I endured wouldn’t have been nearly as frustrating if only, at some point during the four-plus hours I spent on the phone, I could have connected with a disability specialist.

With its upcoming merger, American Airlines will be the world’s most trafficked airline. It’s time they revamped their system so that Special Assistance Coordinators are readily available to address questions and concerns from parents. Sure, any reservation agents can share special needs travel information listed on their screens, but there’s nothing like talking with staffers who really know special needs. It’s not just heartening, it’s necessary.

Yesterday, I got the direct phone number for American Airlines’ Special Assistance Desk—800-237-7976, open 7 AM to 7:30 PM Central Time on weekdays, and during the daytime on weekends. It’s not listed on the site, but I have my sources. I called and spoke with Cindy, who was very nice (and she didn’t care whether or not I’d booked a ticket). She noted that how they work with families is that first you book your reservation, then you let the representative know your child has special needs, then someone from the Special Assistance Desk calls you. She said that they call close to the date of travel; when we spoke, they were getting in touch with people whose flights were two weeks away.

How unnerving is it for special needs parents to leave planning that close to a trip?

Fear of flying takes on a whole new meaning when you’re a special needs parent; every bit of information, assurance, insight and good old consideration helps. Listen up, American Airlines.

From my other blog:

A cool way to describe kids with special needs

Good Night Moon: Special Needs Edition

Then I took my eyes off him, and it was OK

 

Image of plane in sky via Shutterstock

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6 Ways To Make The Time Switch Easier For Kids

Thursday, October 30th, 2014

On Sunday, November 2 at 2 AM, we turn back the clock an hour. Although moms and dads everywhere may wish they could sleep during that extra hour, the reality is most kids will be up and at ‘em. For parents of children with special needs who already have sleep challenges, this can be an especially tricky time of year. A few key strategies to make things go more smoothly for everyone:

Ease into it. For the next several days, move up your child’s nap and bedtime by 15 minutes. Come Sunday morning, your darlings may just sleep in for most of that extra hour. This worked well for our family when our kids were little.

Find the time. If your child is learning how to tell time, or has never had her own clock, this is a good moment to get her one. I let my daughter pick out an inexpensive digital clock online. On Saturday night, I plan to explain the whole “Spring ahead, fall back” thing, turn the clock back and—perhaps most importantly—show her the time when she is allowed to knock on our bedroom door in the morning.

• Make coming home in the dark welcoming. Returning to a pitch-black house after a family dinner out tends to make all of us hate Sunday nights even more, but we’ve found a new solution. Our family got a Piper to try, a chic mini home security and video monitoring system you control through an app. It’s been great to watch and listen in on the kids while I’m at work (there’s a 180-degree lens, so you can view an entire room) and talk to them through the two-way audio. We also got a door/window sensor, for extra security. Our favorite feature is the Smart Switch sensor, which plugs into an outlet; we connected a living room lamp to it, and now before we get home I turn it on from the Piper app so there’s a nice warm glow in the house when we drive up to it. When we’re out I change the setting to “Away” so the motion detector can alert us if anyone tries to break in and steal the Halloween candy.

• Actually use the shades. Pull them down at bedtime; you don’t want sunlight waking your children up any earlier than they might be inclined to because of the time change.

• Create a  sleep chart. If the time shift has thrown off your tot, make a chart with columns for Bedtime/Wake-up Time/How I Feel. Fill them out with her daily, and talk through any grumpiness issues.

• Have a time-switch treat. At our house, we make chocolate-chip banana pancakes the morning after we switch back to standard time and, in the spring, the morning after we go to Daylight Saving Time. No matter how early we rise and shine, it makes getting up totally worth it.

From my other blog:

One thing to do that could save your life

The amazing two words a kid said about my son

The thrill of doing absolutely, positively nothing

 

Image of boy in white bed via Shutterstock

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Broccoli Sprouts and Autism: The Latest Study

Wednesday, October 15th, 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 years, I’ve heard about many autism studies and theories. Some have made me laugh out loud,  others I completely agree with. But it seems as if every other week there is some new study. It’s getting tough to keep up.

This week’s latest study is all about broccoli sprouts and how it can help modify behaviors in autistic individuals. Well not broccoli sprouts exactly but Sulforaphane, the extract derived from broccoli sprouts. Sulforphane is also suggested to have an “anti-cancer effect.”

The study involved 40 boys and young men, ages 13 to 27, with moderate to severe autism. Of these, 29 were randomly selected to receive the supplement (50 to 150 µmol depending on weight). The others received a look-alike placebo, or “dummy” capsule. Neither the researchers nor the participants and their families knew who received the actual treatment until after the trial concluded. (Autism Speaks)

Over the 18 week study, nearly half responded to treatment.  ”Most of these individuals began showing improvements during the first four weeks and continued to improve during the rest of the treatment.” However it’s important to note that during the study, two individuals taking the Sulforaphane had seizures. While they had a history of seizures, it is unclear whether or not Sulforaphane caused them to have one during the trial.

When I shared this study on my Facebook page, I made a joke about it. Because by the headline it seemed a bit out there (and I hadn’t read the research). But one mom asked whether or not I would try it. Honestly, I don’t know. If it were a vitamin supplement – maybe. Someday. I’d need to see more research first. (I’m still trying to decide if I want to start Norrin  on medication for his ADHD.)

One thing that has me on the fence, is that Sulforaphane is known for cancer prevention and treatment. And I think it perpetuates the idea that autism is a disease in need of a cure. I am not interested in a cure for my kid.

I think these autism studies give parents false hope, because there are parents willing to try anything and everything to “fix” their kid. When they try something that works for some kids and not theirs, those feelings of loss and guilt return. I know because I’ve been there.

Research has shown that children who receive early intervention services will show significant improvement. Yet so many children go undiagnosed by three years old especially among minorities.

Autistic kids need more resources. Parents need more support especially as their children grow older. That is where I would like to see research money spent – on providing the resources and support our kids need to learn, thrive and live full lives.

How do you feel about this latest study?

And from my other blog:

Children with Autism: The Parents Perspective
Children with Autism: The Parents Perspective
Children with Autism: The Parents Perspective

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