Posts Tagged ‘ special needs parenting advice ’

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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Nighttime Potty Training Your Autistic Child

Wednesday, January 22nd, 2014

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

It’s the third week of the New Year and my son, Norrin, just turned eight years old. One of our goals for this year is to begin nighttime potty training. When Norrin was first born, I never thought that potty training was something I’d still be thinking about by eight years old. But having a child with autism, I’ve had to learn to let go of time tables and ignore the milestones of “typical” kids.

Recently I was provided with a copy of Seven Steps to Nighttime Dryness and now that I’m done reading it, I believe that it’s time to begin. As with day time potty training, I already know what I need to keep in mind.

Like everything else in our autism journey, preparation is critical. Here are the 6 things I will need to begin:

Commitment. If I want Norrin to be successful, I need to be fully committed and consistent. This means, no more pull-ups. We just used our last one and I have no plans to buy any more.

Prepare/Protect the Mattress. We have a plastic cover over the mattress and then a water proof mattress pad on top. The plastic cover can be easily wiped down. I know a mom who used to add another layer of bedding so that if there was accident in the middle of the night, she could pull off the top layer.

Disposable Bed Mat. I purchased a pack of disposable bed mats to go under the sheets and over the mattress pad for extra protection. The ones I purchased come nine in a pack and have adhesive. You may also use washable bed mats.

Fitted Pajamas and Underwear. Along with the Seven Steps to Nighttime Dryness, I was sent a bedwetting alarm. The book suggests child wear fitting pajamas and underwear if you are using a wearable alarm. Make sure whatever your child wears to bed is something breathable and comfortable.

Reward System. Like all kids, Norrin loves to be rewarded. I really want him to feel proud about his accomplishments so I will give him a quarter (he likes coins) for every night he is dry. And at the end of each week we will take his change to the supermarket and he can use his money for the gum ball machine. Find something that really motivates your child.

Patience. It took us a few years for Norrin to achieve day time potty training, so I’m not expecting overnight success. I know it will be a process. I know there will be many nights of changing sheets and early morning laundry. But with everything else, Norrin has achieved – I am confident he will meet this milestone in his own time.

Have you had nighttime potty training success with your special needs child? Would love to hear about it!

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A Moment Of Gratitude While At The Thomas and Friends Show

Wednesday, January 15th, 2014

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

Last Sunday, we took Norrin to see the Holiday Train Show at The New York Botanical Garden. Our tickets included a chance to see the Thomas and Friends show. Norrin is a huge Thomas the Train fan. We talked about going. I showed him pictures. But still I was nervous taking him.

I will never forget the first time we took Norrin to a kid friendly live performance show. It was almost six years ago, around the time when he was being evaluated for autism. I thought Norrin would be so excited to see The Backyardigans. He wasn’t. It was a disaster. The longest ninety minutes of my life.

A few years later when we went to Disney World, we took him to see Jake and The Neverland Pirates (another favorite of his). After a few minutes, we had to leave. And the last few times we’ve gone to Sesame Place, Norrin has had no interest in watching the parade or seeing the shows.

But since we’ve had recent success with the movies, I wanted to give a live performance show another shot.

We knew that seating at the Thomas show was first come, first serve. We arrived early enough to be first in line. I was proud at how patiently he waited. The staff was friendly and patient. I loved that they handed out crayons and coloring pages to keep the kids busy while they waited. When it time to sit inside, I could tell Norrin was excited. He was smiling and fidgeting with eager anticipation. And when Thomas finally appeared – Norrin’s smile was priceless. He was star struck. He even sang along, clapped and answered questions.

Norrin with his dad watching The Thomas the Train Show

Looking around the small auditorium, I noticed Norrin was the only “big kid” in the room. Most of the kids were between three and four years old. Norrin will be eight in a few days. And I didn’t care in the least. Norrin was happy. I didn’t think to bring his noise canceling headphones and it was a little loud for him. But he sat through it.

Five years ago, I couldn’t see us sitting at a live performance show. I couldn’t see Norrin singing or clapping or getting caught up in an imaginary world. And it’s a reminder of how far Norrin’s come in the last few years.

Norrin still has challenges with many things. And at times, I feel like we’re at a stand still. But taking note of his progress reminds me progress is always possible. And I am grateful for these little milestones. They are often the things that keep me going.

What little milestones have you celebrated lately?

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