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5 Tips To Organize Your Child With Special Needs Room

Wednesday, June 19th, 2013

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

Ever since my son, Norrin, started with early intervention services and therapists started coming into our home, I wanted to keep his room in order. Every few months, I take an afternoon to reorganize Norrin’s room. It gives me the opportunity to throw away broken toys or donate toys that he’s outgrown. I pull everything out of bins and containers put it in the middle of the room and get to work. Now that he’s seven, I have to do it when he’s not home otherwise it’s too distracting and he just gets in my way.

Here are 5 tips that help keep Norrin’s room neat and organized:

Keep Board Games Out of Reach. We use board games during therapy sessions for social interaction and turn taking skills. However, since many have small pieces that can get easily lost – I keep them on a top shelf in the closet. If I get rid of the boxes, I use zip lock bags to hold all the pieces. If you do nothing else, do this. Leaving board games out is too tempting and pieces can get so easily lost. Nothing frustrates me more than wanting to play a game and have pieces missing.

Rotate Toys. I try to do this as much as possible so that Norrin doesn’t get bored. Pulling out a toy that hasn’t been used in a few months, brings new life into something old. And it’s also a good way to measure progress. I just reintroduced an 70 piece puzzle to Norrin. It was in a bin and I forgot all about it. When I first purchased it (almost two years ago), Norrin had no interest in doing it. It was difficult and after a few attempts, he became frustrated and stopped. I pulled it out again but didn’t think Norrin would want to do it. Well…he did. It took him about 30 minutes, but he sat and finished.

Set Toys Aside. Norrin has toys that he can play with whenever he likes and toys that he only uses during therapy sessions. The toys for therapy sessions are set aside in his closet. This is something I picked up during the ABA years. The therapist would keep her toys in our closet and she stressed that her toys only be used during therapy. She needed Norrin to be motivated – if he had access to her toys whenever he wanted, he’d be less likely to work for them and her. Five years later, we still follow this rule.

Save Space Where You Can. Norrin has a bunch of puzzles. I realized early on that boxes and boxes of puzzles take up a lot of space. I consolidated them by tossing the boxes and putting each puzzle in a zip lock. (Before tossing the box – rip out a picture of the completed puzzle and place in the bag with pieces for reference). Then I stored all of Norrin’s puzzles in one big clear box. I love using stackable bins and containers – makes for easy storage in a closet or in a corner of a room.

Make Sure Everything Has its Place. This seems so obvious but it needs to be said. I am big on zip lock bags and plastic containers and bins. Almost all of Norrin’s toys have its own container, bin or zip lock bag. (There’s a cars bin, train bin and crayon bin. A bin for his legos, a bin for his playdough, one for his puppets and one for his magnet letters. There are zip locks filled with puzzles and game pieces.) This way I know where everything is kept and it makes cleaning up easier for Norrin. He understands where all of his things go. And when he wants something, he always knows exactly where to find it.  I even organize Norrin’s books by author or category. Which really helps at bedtime when it’s time to read a story.

How do you keep your kid’s toys and books organized?

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Thanks Dad, You’re An Amazing Autism Grandpa!

Wednesday, June 12th, 2013

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

I talk about my mom a lot and sometimes I even write about her. (She really doesn’t like when I do – my mom is very private and she doesn’t like attention – but since she doesn’t have internet, she only sees what I show her.) My mom and I are just really close. And she’s extremely supportive – especially after Norrin was diagnosed with autism. So I like talking and writing about her.

But since Father’s Day is coming up, I want to talk about my dad and his relationship with his only grandson, Norrin. I have to say, I’m so proud of my dad.

My parents are of a generation where autism did not really exist. And if it did, it wasn’t talked about. While I was getting Norrin evaluated five years ago, my parents didn’t believe there was anything “wrong” with him. But after his diagnosis, my mom became really involved. She watched the therapists and carried over many of their methodologies. I wasn’t surprised by my mother’s involvement or her acceptance.

I was surprised by my dad.

A few months after Norrin was diagnosed, I went to visit my parents. My dad handed me one of Jenny McCarthy’s books. “She has a son like Norrin,” my dad said.

I do not agree with Jenny McCarthy’s thoughts on autism but I happily accepted the book. Because my dad specifically bought it for me. (My dad isn’t the kind of man to just go out and buy gifts – not even for holidays.) I knew my dad was trying his best to understand autism.

My dad has been present at Norrin’s graduation ceremonies and has participated in our autism fundraising walks. He takes him out to the park and they go for walks. My dad even comes up to pick up Norrin from the bus on days we need him too. My dad told me that when he read my very first blog post, he cried. For an old school Puerto Rican like my dad to admit to his daughter that he cried – that’s a big deal.

My dad makes an effort to be a part of his grandson’s life. My dad enjoys the time he spends with Norrin. And like any other proud grandfather, my dad brags about his only grandson to anyone who’ll listen.

And it was my dad who gave me the hope that Norrin may go to college. My dad understands the challenges Norrin has and he still believes in him. My dad believes Norrin’s life will be filled with unlimited opportunity.

There are moments when it’s hard for me to believe, to see beyond where Norrin is right now and I’m grateful that my dad is someone who can show me the way.

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The Moment I Lost Hope For My Special Needs Son And How I Got It Back

Wednesday, June 5th, 2013

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

After five long years of graduate school, I am finally (finally) finished. Last week was my graduation ceremony and it was like coming full circle. Five years ago, Norrin was diagnosed with autism – two weeks before I graduated as an undergrad. Five years ago, I couldn’t imagine what our life would be like. I couldn’t see any hope in either of our futures. And because I couldn’t see any hope, it was hard for me to be happy. It had taken me fifteen years to complete my Bachelor’s Degree – yet I couldn’t appreciate what I had just accomplished. It felt meaningless.

Last week as I marched with 500 other students to Pomp and Circumstance, I allowed myself to feel happy and I felt proud. Not only proud of myself but proud of Norrin. I was able to appreciate how far we’d both come. I was grateful for all that my son had taught me over the last five years – so much more than could have been learned in any classroom.

When the ceremony was over, I met my parents, Joseph (my husband) and Norrin. I removed my gown and cap and Norrin asked if he could put on my “hat.” I immediately helped him put them on. My dad laughed and said, “It’ll be Norrin’s turn in a few more years.”

And in my head, I thought Norrin’s not going to be able to go to college. As soon as I thought it, I felt ashamed. Had I lost hope? Or was I being realistic? I’ve been struggling with this for the last few days.

I believe in Norrin. I see the progress he’s made and appreciate every single milestone he’s achieved – it’s the stuff that keeps me going. We tried sending Norrin to a regular public school for kindergarten, a school filled with “typical” kids. It didn’t work. The following September when I put Norrin on the bus to his new special needs school, I let go of mainstream dreams.

So the idea…the dream of Norrin going to college. It hurts to hope for. I want to be realistic and I want to have hope but line between reality and hope is blurred.

Yesterday I was walking through Central Park with a co-worker. She has a eighteen year old son with autism. I’ve met her son before and he reminded me of an older, more mature version of Norrin. She talked about her son taking Regents exams and the SATs. She shared that she hoped he did well enough to get into the two-year college near her home.

As she was telling me all of this, I thought of Norrin in my graduation cap and gown and what my father said. “Did you imagine your son applying to colleges when he was seven old?” I asked my co-worker.

She laughed, “Oh no…he wasn’t even really speaking very much. I couldn’t bring him into work, the way you do with Norrin.”

I don’t know what the future holds for Norrin. I don’t know what he’ll be like in the next five or ten years. I don’t know if he’ll ever go to college or even if he’ll want to. But the possibility is there. The hope is there.

 

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Safety Measures to Take When Out and About with your Special Needs Kid

Wednesday, May 29th, 2013

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

Memorial Day Weekend came and went, kicking off the summer season. Over the next few months, families will take daily excursions to the beaches, parks, aquariums and zoos, week long vacations or quick weekend getaways. However traveling and venturing out with special needs kids can be stressful, especially when the destination is unfamiliar and crowded.

The summer Norrin was first diagnosed we didn’t go out much and when we did, we didn’t go far. But each summer since, we’ve gotten more adventurous. Over the holiday weekend, we went downtown to Times Square and walked around. We don’t want to feel confined to four walls and familiar places because we’re scared. We also take a few simple precautions before and after walking out the door.

Take a photo before you head out the door. Two years ago when we went to Disney World we took a photo of everyday Norrin before leaving the hotel. Since most phones have cameras, this is such a simple thing to do as a safety measure. During a moment of panic, recalling what your child is wearing may difficult. And its usually the first question asked. Having a photo will ensure your accuracy and officials will have the most current photo of your child.

Know the lay of the land. If you’re going someplace new, print out a map and familiarize yourself with your destination. Look for the bathrooms, guest services and possible exits. These days, amusement parks have apps. Create a game plan for the day and designate a meeting spot in case your group becomes separated.

Child Identification/Contact Information. Norrin knows his first and last name, our names, where he lives and his home number. (We’ve been working teaching him our cell phone numbers.) But he may not provide the information if asked. When we go out for day trips or vacations, we put on Norrin’s ID – nothing fancy, just a dog tag chain necklace with our information.  He’s used to it now, so he keeps it on. There are also MedicAlert Bracelets and Tattoos With A Purpose.

Communicate with your group.  My group usually consists of me, my husband Joseph and Norrin. Norrin isn’t the kind of kid that can walk ahead or trail behind us. His hand needs to be held at all times. (When we were walking around Times Square, if I wasn’t  holding Norrin’s hand, my hand was on his shoulder.) If I have to let go of Norrin’s hand for any reason, I always tell Joseph.  And I don’t let go, until Joseph takes Norrin’s hand. When out with Norrin, we always work as a team to keep him safe.

What safety measures do you take to keep your kids safe?

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Five Years After An Autism Diagnosis (part 2)

Thursday, May 23rd, 2013

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

To read Five Years After An Autism Diagnosis (part 1 – On The Day My Son Was Diagnosed with Autism) click HERE

I cannot believe it’s been five years since my son Norrin was diagnosed with autism. Sunday, May 19th – our autism anniversary – passed with little fanfare. It was a rainy, lazy and dreary day. My husband, Joseph, took a two hour nap, I did laundry and relaxed for a while with a good book. I played with Norrin - we worked on a art project that required patience, concentration and using his pincer grasp.

The day before we spent the afternoon walking around Arthur Avenue – the Little Italy Section of The Bronx. After we went to the playground and walked around the shops, we ate lunch at Mario’s, one of our favorite restaurants. I indulged in a glass of wine, Joseph ordered a beer. When Norrin told the waiter what he wanted to drink, he used the words please and thank you. Norrin sat patiently with his iPad as we waited for our food – and when he got anxious or too loud, we prompted him and he was able to continue playing nicely.  Joseph and I talked about our week, the errands we needed to do and summer plans. We reminisced that Mario’s was where we had one of our first dates (almost 13 years ago). I don’t even think the subject of autism came up.

The weekend for the most part was uneventful and not any different from our usual weekend, like any other “normal” family. We go to the park, we go out to eat, we run errands, we do chores, we sit back and enjoy the moment.

Five years ago, I couldn’t see our life returning to normal. I couldn’t see us going out to eat as a family or me sitting on the sofa reading a book that wasn’t autism related. Five years ago, I didn’t know anyone raising an autistic child. I didn’t even know what autism was. When I think back to the first days after Norrin was diagnosed, it was so hard to have hope. Because there was no one who could offer it – not even the doctor who diagnosed Norrin.

Then we started working with therapists and found an appropriate center based program for Norrin. And slowly we started seeing progress. Norrin learned to point and say a few words. He learned to makes the signs for more and all done. With each new accomplishment, I was given a glimmer of hope. They were often the milestones that kept me going.

Five years ago I couldn’t see beyond all the things Norrin couldn’t do. Now I see how far he’s come and celebrate everything Norrin can do. All the little things like a smile or a wave or a spontaneous WH question.

It’s been amazing watching Norrin grow up, watching him grow with autism. Seeing it evolve and mature. He is no where near being a ‘typical’ kid but he’s happy. At seven years old, Norrin has enough language to get his basic needs met. He uses the bathroom independently (though still needs some supervision). Norrin navigates the iPad better than many adults.  He has a playful and loving disposition, lots of opinions and a fierce determination. He’s one of the hardest working seven-years old I know and I admire him.

I wish that I could say that it’s gotten easier during these last five years. It hasn’t. I am still learning every day. There are nights when I still worry about Norrin’s future and cry. But I have a community of parents who understand me. I have people who I can look to for guidance. I have seen progress. I have hope.

I think about Norrin five years ago and where he is now. And I know in another five years I will look back at his progress with amazement. Norrin’s come such a long way. And so have I.

 

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