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The Importance of Playdates and Kids with Autism

Wednesday, March 12th, 2014

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

My son, Norrin, playing with his friend, Dylan.

“Play is often talked about as if it were a relief from serious learning. But for children play is serious learning. Play is really the work of childhood.” -  Fred Rogers

When my son, Norrin, was first diagnosed with autism he had no appropriate play skills. He didn’t even have much interest in playing with other children. Norrin was content playing by himself. I never pushed playdates because our schedules consisted of work, school and therapy. Most of the other special needs parents I know juggle the same kind of schedule. So working on socialization and playdates with peers wasn’t a priority for us especially since we knew it was being done at school.

A few weeks ago, I hosted a party and invited a few moms with their children. It was our first party in years. And it was the first time I had other kids with autism in our home. Unsure of how to host while entertaining children, I asked our ABA therapist if she could help out for a few hours.

I’ve seen Norrin at the playground. Sometimes he’ll run around with another kid but it’s never for more than ten minutes. I’ve seen him in school sitting beside a classmate but not really engaging. Watching Norrin interact with kids  in his own environment was eye opening for me. Norrin was talking and sharing and wanting to play with the other kids. He even read his guests a story.

At eight years old, Norrin is finally ready for playdates. And since our little party, he’s been asking for all his friends to come over and play.

I’m no longer tied to mainstream dreams. I just want Norrin to be happy and be as independent as he can. I also want him to have at least one friend. A friendship will never form unless I start cultivating the value and meaning of a friend now.

A few weeks ago I shared that I was ready to start cutting back on our therapy. I’ve spent the last five years focusing on all the skills I thought were more important, always putting socialization on the back burner. It’s time to take play seriously.

Do your children have regular playdates?

 

Have you heard about my #EverydayAutism Photo-a-day Challenge - go check it out on Instagram!

 

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The Importance Of Talking To Your Kids About Disability

Wednesday, March 5th, 2014

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

I once asked a friend if her son knew that he has autism. “No,” she said, “We’re not that kind of family.” I left it at that because I understood what she meant.

Growing up we never talked about my sister’s intellectual disability. My sister’s original diagnosis was mental retardation and on the occasion my mother  referred to it,  she’d say, “She’s not retarded. She’s just a little slow.”

I can’t fault my mother for not being open about my sister’s disability. My mother’s of another generation. And my sister – who is in her mid-twenties – is quite “high-functioning.” She works part-time, she goes to the gym, she takes the train by herself.

The other day we were out for a family dinner – talking and laughing the way families do. And as my sister was telling me a story, she used the “r-word” to describe something she thought was stupid.

There are times when I hear it, I speak out against it. And there are moments when I let it go. But whenever the word is used in front of my son, I can’t let it go. I will not allow anyone to use the r-word in front of Norrin. I will tell them to use another word.

Hearing my sister use the word upset me and I couldn’t let it go. She used it in front of Norrin. She used a word that degrades herself and every individual with a disability. When I explained to her why I didn’t want her using the word, she apologized. “It’s just slang,” she said.

My sister believed it was slang because she was never taught otherwise. We never talked about the r-word at all in our house.

But the r-word is not “just slang.” It’s a slur. It’s a word meant to insult. In a recent Huffington Post article by John C. McGinley, he writes:

…however blithe the everyday practice of spicing up one’s speech with the words “retard,” “retarded” and the suffix “-tard” has become? The (presumably) unintended result is still the same. A population of people, who has never done anything to harm anyone, is circuitously targeted and suffers from a trickle-down discrimination that is very real and very painful.

My sister is a hard worker, she is a talented artist and she’s bright. She’s a young women worthy of respect, not ridicule. I wouldn’t want anyone to use the r-word in my sister’s presence and I certainly don’t want her using it.

My son Norrin doesn’t know that he has autism, he is not capable of understanding his diagnosis just yet. But we don’t whisper the word autism. One day, we will tell Norrin he is autistic. It’s not about being a certain kind of family. It’s about teaching him who he is. And teaching him to stand up for himself when he is being discriminated against.

Today is the day to Spread The Word – the annual day to raise awareness about using the r-word. I admire this online movement and those committed to taking the pledge. But awareness needs to begin at home. We need to talk about disability and the words that we use. We need to talk to them about respect for all. We need to talk to them about the weight of their words. Words are powerful weapons and like any other weapon, we need to teach our kids how to use them responsibly.

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

From my other blog:

 

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Sometimes It Is Okay To Say No To Therapy

Wednesday, February 26th, 2014

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

When my son, Norrin, was diagnosed with autism five years ago, I wanted to fill every moment with therapy. I thought therapy was the answer to everything. If I’m going to be completely honest, I believed that if we bombarded Norrin with enough services – he’d catch up. At barely three years old, Norrin attended a special education pre-k program where he was given ABA, Speech, Physical and Occupational therapy. In the afternoons at home,  Norrin received 10 additional hours of ABA therapy as well as speech therapy and occupational therapy at a sensory gym. We took therapy seriously. We didn’t cancel, we were always on time, we never asked to cut sessions short.

Norrin is now eight years old. He goes to a special education school an hour away from home where he still receives ABA, Speech and Occupational therapy. And in the afternoons, he receives an additional 10 – 15 hours a week of ABA therapy. I no longer see therapy as a quick fix but as a mom who works outside the home, I rely on the therapists to work with Norrin and do the things I cannot do. I want to be Norrin’s mother, not his therapist.

And after years of having therapists in and out of my home, I’ve become okay with canceling sessions or asking them to end early so that we can have an early dinner or go out to errands or do something fun.  I know that a missed session here and there will not make or break Norrin. Therapy is no longer about catching up, it’s about making him as independent as possible.

Yesterday, I received an email from our main therapist asking if we wanted to add weekend hours. Without even thinking, I responded no. And I even requested that we reduce the number of hours of therapy Norrin currently recieves.

There was a time when I wouldn’t think twice about having a therapist work with Norrin on the weekends. Now I wonder if it’s worth it.

In order for Norrin to become independent, he needs to be allowed to think for himself, to make mistakes, come to his own conclusions and solve his own problems.  Norrin cannot live his life, thinking a therapist will be his shadow.

That’s not how I want him to live. I don’t want Norrin’s days and weekends filled with therapy. Our weekends belong to us. Our afternoons belong to us. I want time with him. So it’s time to let go a little and say no to more therapy.

 

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Caroline’s Cart: Shopping Made Easier For Kids With Special Needs

Wednesday, February 19th, 2014

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

Before I was a mom and before my son, Norrin, was diagnosed with autism I used to side eye the mothers who had their ‘too big’ kids stuffed into the seat of a shopping cart. I thought the kids were lazy and assumed the moms had no control. Now I know better.

I remember what it was like shopping with Norrin when he was younger and first diagnosed with autism. If I were with my husband, it was easier. If I was by myself, I’d either hoist him up and squeeze him into the shopping cart seat (knowing he had exceeded the limit) or struggle while shopping, holding his hand and navigating crowded store aisles.

Even now, at eight years old, we hold Norrin’s hand or stay close by. And those few seconds if/when he runs away and out of sight and I’m yelling his name scanning the aisles, are agonizing. I wish he could still fit in a shopping cart seat so that  I can run in and out without me having a heartache or him a meltdown.

The moment I saw Caroline’s Cart in my Facebook feed, I knew how important it was for special needs families. The cart was specifically “created for special needs children. It provides parents and caregivers a viable option to transport a child through a store while grocery shopping, without simultaneously having to maneuver a wheelchair and a traditional grocery cart.

Some of the features of Caroline’s Cart includes:

  • The seat back has a five degree tilt for increased comfort for low muscle tone children
  • The seat faces the caregiver, so eye contact is easy to maintain, children with anxiety issues can watch the parent during the shopping trip, and children prone to seizures can be monitored
  • The platform below the seat provides a footrest for the child
  • An abductor in the seat helps keep the child upright
  • A harness helps to secure the child so parents have hands free to steer the cart and shop

While Norrin doesn’t require the use of a wheelchair, we could still benefit from Caroline’s Cart. Sometimes shopping can be overwhelming for kids with autism. Stores are sensory overload – people talking, kids crying, loud speakers crackling, shopping carts banging into displays. Caroline’s Cart would be especially helpful while at check out. It can be difficult to keep an eye on Norrin while I’m  trying to unload my purchases and pay.

I haven’t seen Caroline’s Cart in any of my local stores, but I’ll be looking. And I want you to look too. If you don’t see it and you need it, don’t be scared to make a call or send an email. Because it never hurts to just ask. It worked for this mom, it could work for you.

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Baby Care Basics: When a Baby Has a Birth Defect
Baby Care Basics: When a Baby Has a Birth Defect
Baby Care Basics: When a Baby Has a Birth Defect

image: screen shot Caroline’s Cart

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Little Signs Of Independence When Your Kid Has Autism

Wednesday, February 12th, 2014

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

These days, we’re letting him take the lead.

Five years ago when Norrin was diagnosed with autism and started Early Intervention, we had a team of therapists in and out of our apartment. We focused on teaching Norrin how to ask for help. “Help” was one of the first signs he learned and “I need help” was one of the first three word sentences he said.

The irony is that as soon as Norrin began saying “I need help” spontaneously and independently, I prompted him to do the thing that requested help with, himself. Even if he couldn’t do it, I wanted him to at least try before I stepped in to help.

Norrin is eight years old and he still needs my help with many things. The challenge is figuring out when he needs my help and knowing when to let him be. Lately, Norrin’s motto has been “I can do it, all by myself.” He wants to brush his teeth and pour his juice and wash his hair all by himself, pushing my hand away when I try to help. Some days, we walk down the street and he doesn’t even want to hold my hand. And just last night, he took his first selfie! I love these little signs of independence. It’s a good thing. We want Norrin to be as independent as possible.

But independence can be messy.

Norrin doesn’t do the best job at brushing his teeth. When he pours juice, he almost always pours so much, it spills over the top. When Norrin washes his own hair he doesn’t know to rinse all the soap out. And when we’re walking, Norrin has difficulty navigating busy sidewalks. He doesn’t know to look both ways to cross the street.

Norrin craves independence but he still needs my help and my hand. And instead of doing for him, I am learning to guide him. I let Norrin squeeze toothpaste on his brush and let him brush his teeth. When he says he’s all done, I tell him it’s my turn and I brush his teeth again. When he wants something to drink, I stand nearby and let Norrin pour his own juice but I tell him when to stop. And if he spills juice, I make him clean it up.

I’m not going to lie. It’s easier, neater and faster to do for Norrin rather than letting him do things on his own. But if isn’t taught to do these little things for himself, how can he do the bigger things? The little things are the baby steps to an independent life.

Is your child showing signs of independence? How are you letting them go?

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What Is Autism?
What Is Autism?
What Is Autism?

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