Archive for the ‘ Must Read ’ Category

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:

Add a Comment

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

Add a Comment

Can We Change The Way Society Thinks About Disability?

Thursday, August 14th, 2014

Yesterday, I read an article about a PhD candidate in New Zealand who will be looking into changing the way society thinks about disability. Titled “Reimagining Disability,” the research will explore disability pride and ableism (discrimination in favor of  ”able-bodied” people) through a group of intellectually disabled adults.

“Having a disability is largely viewed as having a problem, when it shouldn’t be,” says Ingrid Jones. “It’s just part of the diversity of humanity. The reason we have disability oppression is because society views disability as a problem. Being ‘able’ is seen as the norm, when society is more diverse than that.”

All I could think was, AMEN. 

To me, it didn’t matter that her research is taking place across the world, because the challenges people with disability face seem to be similar everywhere. It’s more intense in some places, of course; there are developing nations where children with special needs are kept hidden away in homes, and may be considered a “curse.” But the commonality all countries share, sadly, is that people with disabilities are often seen as defective, lesser human beings.

I know this firsthand from raising Max. He’s a super-cute kid (if I do say so myself), and a charming, happy one at that. Bright, too. But there have been many times in his life when people have expressed pity about him, because of his cerebral palsy. Or excluded him from programs. Or have only been able to see his disabilities, not his abilities (or possibilities).

Max’s biggest challenges aren’t the ones caused by his cerebral palsy—they’re the perceptions people have of him.

As disheartening as this can be, I have hope. Through blogging and social media, many parents are showing the world just how much our kids rock. We’re asking for people to respect our children, both in their language and in their attitudes. We’re pushing for inclusion, in school and out, as a growing number of programs and events crop up that offer the same. More and more nonprofits are spreading the good word, like AbilityPath and Easter Seals.Many states, along with the Supreme Court, have chosen to use the term “intellectual disability” in laws over the now defunct term “mental retardation.” Meanwhile, technology like speech apps are enabling our kids to better interact with the world.

It’s going to be a long haul. But research bit by bit, program by program, idea by idea, people can find ways to help society welcome and include those with disability. Person by person, parents can change minds, and help give our kids a better chance at being seen as equals in society.

It takes a village to raise a child, yes—but it also takes a village to cultivate respect for a child with special needs.

From my other blog:

Would you call my child a retard?

My kid with special needs understands you so don’t ask me, ask him

Max takes a walk I will never forget

Add a Comment

Top 20 Favorite Summer Pleasures

Friday, August 1st, 2014

With the arrival of August, I’m realizing I have about one month left of real summer—and I’m squeezing in as much as I can. For me, it’s not about vacation; there’s only so much time I can take off work, after all. It’s about the season’s small, everyday pleasures. My favorites:

 Watching fireflies. Magical no matter how many times you see them.

Water balloon wars with the kids.

• Riding down a highway with the sunroof open and Springsteen blasting [or insert music of your choice].

Watching the kids eating ice-cream cones. Actually, watching any kids eating ice-cream cones.

 Slipping into a crisp white t-shirt and navy shorts or pants. This combo always makes me feel like I’m about to jump onto a yacht.

A glass of iced tea with lemon. Sweet, please. Sitting at the kitchen table with some magazines and nobody in the house but me, please.

• Feeling all cozy under the sheets on a hot night, with the a.c. on full blast.

 Not having to dress the kids in a million layers before they go outside. It’s been about five months since winter and I’m still appreciating that.

• That shower you take after you’ve been at the beach all day.

 A favorite pair of sandals. Mine: an ancient pair of tan Birkenstocks that my husband thinks are the world’s least sexy shoes. Could be, but OMG, they’re comfy.

Hydrangeas in bloom. We only got one this year—that cold streak did a number on the bushes—but it was one beautiful bloom.

Picking blueberries or strawberries with the kids, then making jam or dessert.

 Ten perfectly polished pink toes.

 A Sunday afternoon barbecue with friends.

 Reading under the stars. Our family recently did this for the first time, and everyone loved it. Just grab the kids, a blanket, books, snacks and flashlights, head out at dusk, enjoy.

Fresh fruit salad. Made by you and the kids with a melon ball scooper, one of those no-tech gadgets that’s always fun.

Boardwalks. Any kind, anyplace.

The scent of just-cut grass.

Date night with your partner at an outdoor cafe.

Watching your kids enjoy rides at the fair, carnival, amusement park or wherever there are rides to be had.

From my other blog: 

A reading under the stars party

Let It Go, like you’ve never heard it sung

What I think when I watch my kids sleep

 

Image of child eating ice-cream via Shutterstock. Other photos, Flickr. Iced tea: Cheryl Vanstane; hydrangea: Chris Gladis; fruit basket: debbilytle

Add a Comment

A Little Girl Gets A Second Chance At Childhood

Wednesday, July 16th, 2014

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

Kinsey Saleh was like any other feisty 5-year old girl who liked playing with her friends after school and eating ice cream. However, Kinsey’s mother, Nadine Morsi, said she knew “something was wrong” when Kinsey started experiencing shortness of breath, fatigue, decreased energy and unexplained bruising. When Kinsey complained of joint pain in her knees, Morsi insisted on a blood test. Both the doctor and Morsi were shocked when the test revealed Kinsey had developed a rare case of end-stage kidney failure. Kinsey’s condition was so critical, doctors feared the 5 year-old would suffer from a stroke or go into cardiac arrest.

Instead of playdates and ice cream, Kinsey’s childhood afternoons consisted of doctor’s appointments and dialysis. Kinsey needed a kidney transplant and was put on a waiting list. Kinsey’s mother, while a perfect match, was unable to donate due to congenital clotting disorder that made surgery risky. “I felt helpless,” Morsi said.

“I became a special needs mom overnight,” Morsi said. As a pediatric occupational therapist for the New York City Department of Education, Morsi was aware of the assistance her child could receive. Kinsey was able to attend school with the assistance of a full-time health paraprofessional.

Morsi admitted to wanting to keep Kinsey’s diagnosis a secret. But a close friend insisted Morsi share their desperate search for a kidney donor. Kinsey’s story was shared throughout Facebook and she quickly captured the attention of local media.

Morsi has used her experience to raise awareness and help others. Every day 13 people die waiting for a kidney. “We can all live on one kidney…please share your spare if you can,” Morsi urges.

Last month, nearly six months after her diagnosis, Kinsey received a kidney transplant. She is doing well and is gearing up for the 1st grade in September (without any special assistance). Kinsey can spend the remainder of the summer with outings to the park and the sweet promise of ice cream. Morsi is extremely grateful that her daughter has been given a second chance at a normal childhood. She recently shared: Every single day is truly a gift. Not a day goes by that Kinsey’s donor is not in our hearts for allowing her to be a kid again.

Keep up with Kinsey and her mom via Facebook - Kidney for Kinsey.

 

Catch up with my last post: How Not To Handle a Public Meltdown

And from my other blog:

Baby Care Basics: Choosing the Right Doctor
Baby Care Basics: Choosing the Right Doctor
Baby Care Basics: Choosing the Right Doctor

Add a Comment