Posts Tagged ‘ Special needs ’

Helping Family Understand Autism

Wednesday, March 19th, 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).

I didn’t know anything about autism when my son, Norrin, was first diagnosed. Many friends and family dismissed my concerns and tried to assure me that Norrin was “just fine.” Autism is an invisible disability and it’s hard trying to make sense of something you can’t see. For a long time time after Norrin’s autism diagnosis, I had a tough time trying to get my loved ones to understand – including my mother. Over the years my mom has learned to understand autism and become one of Norrin’s fiercest advocates.

The April issue of Parents magazine is dedicated to Life in a Special Needs World. And family plays a huge part in the life of a special needs child and their parents.

While there are some in my family who still don’t understand Norrin’s autism, there are many that do. And I realized that in order for my family to truly understand autism, they needed to be involved. Here are 3 ways to include family and friends to help them better understand your child:

Bring them to an IEP meeting. No one should have to attend an IEP alone. The IEP meeting is open to anyone who knows and loves your child. Invite a friend or family member – they don’t have to say anything or even be familiar with special education. They just have to be there next to you. Let them experience a moment in your special needs life.

Let them sit in on a therapy session. The next time your child has an therapy session, have your friend or family come over. They don’t have to participate or assist – they just have to observe. Let them see what your child is like, how hard they work and what they are capable of doing.

Be completely honest. As special needs parents, we celebrate every achievement. Every milestone matters and we want to brag about our kids. But if you want your family to really understand, you need to go beyond the highlight reel. You need to share the tough stuff too.

From my other blog:

For more ways to help friends understand Autism, download Autism Speaks Family Support Tool Kit.

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

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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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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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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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What A Special Needs Individual Is Worth…According To One CEO

Wednesday, February 5th, 2014

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

As an autism mom, I have just as many dreams for my son, Norrin, as any other parent raising a ‘typical” kid. One of my dreams for Norrin is that he grow up and be able to care for himself. I want him to have the opportunity to find work that he can take pride in. I am raising Norrin to be a respectful and responsible young man who will become a valued member of society. And I want Norrin to be recognized for his potential and worth.

However, wealthy CEO, Peter Schiff, believes that individuals who are “mentally retarded” are worth $2 an hour. Schiff’s comment is not only arrogant but ignorant. And it perpetuates the misconception that individuals with special needs are less than and unworthy.

Those of us who raise, love and know individuals with special needs, know how wrong Schiff is. It is a privilege to recognize a person’s true value. My friend, Jo Ashline, pretty much summed it up in this simple tweet:

I have a 27-year old sister with an intellectual disability. While there are jobs that she cannot do, there are many she can. For the last few years, she’s had a part time job as a greeter at Ikea. She’s able to take the train to and from home independently and she feels good about the money she earns. I am grateful that she works somewhere that values her as a person. That’s what I want for Norrin and every other kid with special needs.

Just because someone has a “disability” doesn’t mean they lack complete ability  to perform a task. Brad Fremmerlid is an amazing example of what can be accomplished when an individuals special talent is put to good use.

As Norrin’s mom, I believe Norrin is priceless. But on the day he is able to work, I want him to be treated equally and paid accordingly. Because regardless of autism, if he’s able to perform a job well – he should be paid fairly. It’s his human right.

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