Posts Tagged ‘ special needs parenting advice ’

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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Toilet Training A Child With Special Needs: Parents’ Top Tricks

Tuesday, September 16th, 2014

I recently found out about Touchless Toilet Technology from Kohler—a way to flush just by holding a hand over the tank lid, where a sensor has been placed. It’s really cool, and it seems like it would have been an excellent potty tool when I was training Max. Back then, both of us needed all the motivation and temptation that we could get. Max was day trained at school for a long time before he finally became so at home, at age 9. One key thing I learned: Parents have to be just as ready as the kids are. Potty-training a kid with special needs requires dedication, and if you’re not diligent about whatever tactic you try, your child won’t get into the groove.

I asked special needs parents on social media for their best tricks and tactics for potty training a child with special needs. May the flush be with you!

ENCOURAGEMENT

“What finally worked was using star stickers on a chart. Nicholas got to put one on every time he went. It seemed to really work for him that way (even though I still had to more or less force him onto the seat each time).”—Sarah L.

“The Clean Pants Check. We did the usual sitting on the potty 30 minutes after eating or drinking, but instead of checking every 30 minutes thereafter to see if he was ‘dirty,’ we checked to see if he was CLEAN, then rewarded him. He is autistic and was not potty-trained at 4.5 years old. It only took one month with this method.”—Peggy M.

“Lukas is autistic. We did lots of modeling and letting him see us go. We are not a shy family. No pressure. A couple of months after turning four, he just went in and did it. That was it.”—Rebecca D.

“I put a Pull-Up on over a pair of panties. She felt the wetness, which ultimately motivated her not to go in her pants, and I had the leak protection of a Pull-Up.”—Crystal S.

“My son was very stubborn. Making him responsible helped. He had to get the Pull-Ups from the drawer and throw them away. I bought toddler wipes so he could more easily clean himself. Eventually I think it just came down to…it was time. He was 9.”—Angela S.

“For nighttime training, two words: alarm underwear!“—Melissa M.

“For my grandson, I picked a weekend, I talked about it with him and told him when he got home from school on Friday, he would be able to wear Big Boy underwear that he picked out the week prior (Buzz Lightyear)…. The two days of potty training gave him the ability to understand what holding it meant, and he had had to tell somebody. He has had a few accidents, but we never went back to diapers. He will be 9 tomorrow and completely potty trained. They said he would never accomplish being potty trained…. HA!”—Barbara D.

EDUCATION

“Avakid’s app See Me Go Potty. Seriously, worked like a charm.”—Faye C.

“We used potty-training DVDs and huge celebrations: woo-hoos, dancing, making a complete jack@$$ of ourselves.”—Devon B.

“Learning to point to icon on his speech app led to being willing to sign/verbalize needing to go. Didn’t happen until age 12 after trying many other ways.”—Peggy R.

“Repetition. We just did it over and over and over and over (you get it) until it stuck. Oh, and Reece’s Pieces.”—Patty H.

ENTERTAINMENT

“I bought those little tablets that you throw in the water of the toilet, they come in all different colors. I guess it’s kind of like target practice: Once they pee on the little tablet it starts to dissolve nd turn the toilet water whatever color the tablet is.”—Stacy S.

A giraffe puppet trained mine! They wouldn’t do it for me, but they’d do it for the puppet.”—Kristen R.

“For my daughter, I painted her toenails while she sat on the potty. She was fascinated by watching me do it and it would keep her still and help her stay put for a few minutes.”—Rosie R.

“There is this funny song about poop in Brazil, with a video clip and everything. I used to sing it for my son, making voices and faces, while he tried to do number 2. It worked really well. This is the link. Yeah, it’s a poop singing!”—Andrea B.

REWARDS/BRIBERY!

“He wanted a doctor kit so I put a brand new one on top of the entertainment center out of reach and said he had to use the potty and get out of diapers to have it. Every time he asked for it I just said, ‘You know what you need to do.’ I didn’t push him to use the potty. One day he decided he wanted it enough and did it. He was almost 5.”—Jennifer R.

“Had a treat box in the bathroom filled with cheap toys my son loves from Walmart and Big Lots! When he did his thing, he would get to choose one.”—Kay T.

“I used Daniel’s favorite, M&M’s, plus I kept a potty chair in the family room for emergencies!”—April G.

“A Lalaloopsy mini doll as a reward for poop on the potty. I bought an eight-pack for $44. Best money I ever spent. After two years of potty training for poop, this finally seemed to work at the age of 6.”—Christie C.

“I told my son with Sensory Processing Disorder that we couldn’t go to Disney World the following week, because Mickey didn’t let kids his age who couldn’t use the potty into Disney World. I only told him this because his OT and I agreed he was not doing it purely out of stubbornness, at that point. I wish I had done it sooner because 48 hours later, he was completely day-trained.”—KLW

CUE: LET IT GO

“Nothing worked. And we tried EVERYTHING! He just had to be ready. We finally just gave up, told him he could stop trying and wear Pull-Ups as long as he needed to. He self-trained the next day. He was 4 and we’d been trying for two years. I think just stepping back and taking the pressure off, letting him set the agenda and be in control of the process was key for him. He has Asperger’s.”—Angela C.

“Wine. #formom.”—Katrina M.

From my other blog:

Kamikaze potty training

A happy ending to the toilet-training saga 

Potty training boot camp
Image of child looking at toilet via Shutterstock 

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Prompting Conversation And Communication With An Autistic Child

Thursday, August 28th, 2014

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

My son, Norrin, has been working with a speech therapist for the last six years – ever since his autism diagnosis. At the time he was diagnosed, he had no language or communication skills. Recently, Norrin saw a picture of me that prompted him to ask me 5 appropriate questions in a row. I was beyond excited! Since then, I’ve been finding ways to build on his conversation skills.

Linda M. Reinert, speech language pathologist and author of Talking Is Hard for Me! Encouraging Communication in Children with Speech-Language Difficulties, encourages parents, teachers and caregivers to “expect communication.”

Tempting as it might be, stop trying to read the child’s mind. Consider what the next level of communication might be and expect that…expect the child to respond in a way that just a bit more difficult than [his or] her current means of communication.

I always try to keep that in mind when I talk to Norrin. He’s been much more expressive and so now I expect a little more each time we talk.

Here are my 6 simple rules for prompting conversation with my son:

Set the mood. Make sure your child is relaxed and ready to talk. Turn off all distractions so they can focus on you. And give yourself at least 10 – 15 minutes to commit to giving them your full attention. Go for a walk in the neighborhood and talk about what you see. Sit at the table while they are having an afternoon snack. I like talking to Norrin right before bed. He’s had his bath, he’s winding down and open to talking.

Keep it simple and specific. Don’t go into a whole monologue and/or fire off a bunch of questions. Use simple language and ask them one specific question at a time.

Follow up. Conversations are all about the follow up question. Build your conversation based on the answers your child provides.

Be patient and wait for response. Some kids need a few minutes to digest the question and think about the answer. So wait a minute or two.

Repeat and/or rephrase the question. If you’ve asked a question and too much time has passed. Ask again. If you have to ask a third time, rephrase the question. If they need help, provide two choices or use pictures and have them point.

Look for inspiration. There is inspiration everywhere. Show them a picture of something fun you did together and ask your child about it. Sometimes I’ll point out something as we’re walking around the neighborhood and ask him to tell me about the specific object.

It really doesn’t matter what you talk to your child about. The important thing is to take the time to talk to your child and get them into a back and forth dialogue. And with each conversation, always expect a little bit more.

And from my other blog:

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

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