Posts Tagged ‘ Learning disability ’

Make The First 5 Years Of Life Count For Your Child

Wednesday, September 18th, 2013

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

My son, Norrin, was about 16-months old when I first suspected that something may be…wrong. I remember asking my husband – he dismissed my concerns. Experienced mom friends told me I was just being a “new mom.” My mother told me I was reading too many books. And my pediatrician suggested we wait and see.

So that’s what I did. I waited. I listened to everyone else instead of going with my gut instinct.

But I knew. I knew as soon as I took Norrin in for that fist evaluation. I knew when I started flipping through Norrin’s milestone calendar. It was practically empty. I wasn’t too busy to fill it out, he hadn’t met most of the milestones of a typically developing child. I knew – before the doctor even diagnosed him – that Norrin had autism.

When Norrin was diagnosed he was 2-years and 3 months old. He had the cognitive level of a 14-month-old and the language level of a 7-month-old. And as I read through the 20-page evaluation, all I thought about was all the months I wasted by waiting.

Ever since Norrin was diagnosed, I’ve gotten emails or calls from concerned moms – asking about the signs of autism or whether they should have their child evaluated. And I always say the same thing: If you have any concerns, GO. Don’t wait. It’s better to go and be wrong about your concerns, than wait and be right.

With the support of CVS Caremark Charitable Trust , Easter Seals is providing access to the Ages & Stages Questionnaires® (ASQ) —a FREE screening tool. If  you have concerns about your child, you can answer the questions to monitor his/her developmental progress.

As the largest provider of early intervention services, Easter Seals knows what’s possible when kids get the support they need… and what happens when they don’t. We can give every child an equal opportunity to learn and grow— but it’s important to get kids the help they need in the critical years before they turn five.

The questionnaire takes less than 20 minutes to fill out. Don’t wait. If you have a concern, fill it out today. The questionnaire is available in English and Spanish.

I love Norrin, I am not sorry that my son has autism. The only thing I am sorry about is that I waited to get him the help he needed. Don’t make the same mistake I did.

 

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10 Things You Want Your Kid’s Special Education Teacher To Know

Wednesday, August 14th, 2013

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

In less than four weeks, on September 9th, New York City kids will return to school. My son Norrin will be one of them. Which seems unreal because since his school has an extended school year, his summer vacation just started. (This week is actually his first week off from school.) Norrin’s school is also ungraded. But if it weren’t, he’d be starting the 2nd grade. This also seems unreal…

I feel lucky that he’ll have the same teacher as last year. But in previous years, whenever Norrin started a new school year, I would send in a note with key information about him. In my experience teachers appreciated the gesture. (There was only one that didn’t. And man, oh man, was that a sign of how our school year would play out!)

On the first day of school, these are 10 things your kid’s teacher should know:

Backstory. Doesn’t need to be extensive. Just a few lines on when they were diagnosed and a list of past services or therapies.

Progress made over the last year. Has your child made great strides over the last year? What improvement have you seen? Let the teacher know what your kid is capable of and that they have significant potential.

Strengths. Brag a little. Is your kid a whiz at the iPad or a super speller? Your child’s teacher will want to focus on their strengths right away.

Weaknesses. Maybe your kid is a great speller but has difficulty with hand writing. You want balance in your letter. And honesty is important.

Enjoyed Activities. What does your child like to do in his/her spare time? Will they pick up a book or go for building blocks?

Activities that are frustrating. What is particularly difficult for your child? What will cause your child to have a complete melt down or shut down? If your child is non-verbal – what will child do when frustrated?

Motivators. In order to work through a frustrating activity, your kid will need some motivation. And your kid’s teacher will want to know what motivates them as soon as possible.

Self-stimulating behaviors. Norrin has quite a few self-stimulating behaviors. One of them is pressing a hand (either his or someone else’s) against his cheek while his mouth his open. When Norrin started kindergarten, I wanted his teacher to know about this behavior right away since some people think he’s going to bite. Norrin isn’t a biter, he just does this for the sensory input. Educating a new teacher about your child’s self-stimulating behaviors is something they absolutely need to know on the first day. They will want to know what triggers it and how they can best redirect your child.

Goals. Aside from the IEP goals, what goals would you like to see your child achieve. Be open and realistic about your expectations.

Contact Information. Provide all of your information – include all phone numbers and emails. Also note the times when you can be reached at each number.

The first few weeks of school are always challenging for our kids, you want them to be successful. Never forget that you are a critical member of the IEP team. And you are the expert when it comes to your kid. So don’t be shy about sharing your knowledge with a new teacher.

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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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What’s The Big Deal About The Asperger’s Disorder Elimination?

Friday, December 7th, 2012

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

Earlier this week the American Psychiatric Association (APA) announced the approved revisions for the May 2013 edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Among the revisions – the “Asperger’s Disorder” diagnosis will fall under “Autism Spectrum Disorder.” According to the Huffington Post, the purpose of the change is to “simplify [the] diagnosis.”

I remember when Norrin was first diagnosed with autism, the doctor told us to think of autism as an umbrella. And under the umbrella was: autistic disorder, Rett syndrome, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger’s disorder. During that first year of Norrin’s diagnosis, my husband (who was in denial) would tell people that Norrin had PDD-NOS. And I would think to myself – isn’t it all the same thing? But for my husband, any other name sounded better than autism.

At times I feel as if there is this need for distinction: high functioning, low functioning etc. Because for new parents, a straight up autism diagnosis is scary. And I think for some, Asperger’s is easier to accept. For parents who already have an Asperger’s diagnosis for their child, to have that taken away, for there to be no distinction within the DSM-5 – could mean having to go through the acceptance process all over again.

Or the change could mean nothing at all.

I honestly don’t know what it will mean to parents, since I don’t have a kid whose diagnosis may change. So, I thought I’d ask a few mom of kids with Asperger’s for their thoughts:

When I first heard about the proposed DSM changes, I was worried, of course, about what it might mean for my [12-year-old] son. He identifies very strongly as an “Aspie” and I could just picture that conversation. (“You don’t have Asperger’s anymore.” “YES I DO.”) I think the goal here with the DSM revisions was to say “autism is autism” and that makes sense to me. Asperger’s will stick around as a descriptor (or, in my son’s case, a self-identifier), but clinically speaking, it will simply be high-functioning autism. The main concern seems to be that some kids may currently be labeled with Asperger’s but do not meet the criteria for the autism label, and what happens to them? I don’t know the answer to that. ~ Mir

Looking at the new criteria, Zach [11 years old] still meets the threshold for an autism diagnosis. Honestly, I only think he was diagnosed as Asperger’s originally because he’s so verbal. I don’t necessarily agree with that because he has a younger brother who is also verbal, but officially diagnosed as LFA [Low Functioning Autism]. On any given day, the boys could trade the diagnoses the doctors have put on paper for them, so in our house, it’s all just autism. ~ Amanda

My daughter, who is about to turn eight, understands she has Asperger’s, and is quite open about it. She has been around kids with severe forms of autism and so for her the label of autism doesn’t resonate. I think she’s too young to understand the idea of the spectrum and the reasons for the DSM changes, so for now I will continue to refer to her as having Aspergers. My son only just turned four so time will tell regarding how this change impacts him, if at all. Based on the new criteria I don’t think he would have any problem getting an autism diagnosis. My Aspie daughter might not be diagnosed under the new criteria. ~ Sharon

My own personal feeling is this – so long as my child gets the appropriate educational services he needs, I don’t care about the diagnostic label.

The APA stated that the change will not impact special education services. But only time will tell. In a perfect world, if a child needs extra support – they should simply get it, regardless of the diagnosis. And I think that’s the bigger conversation that we as parents need to focus on.

What are your thoughts on the change? Are you worried? Do you think it will impact special education services? Or do you think “Autism is Autism?”

 

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