Posts Tagged ‘ special education ’

The Trade-offs You Make When Your Kid Has Special Needs

Wednesday, October 30th, 2013

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

It was just a typical Friday at the office. I was emailing my co-worker making plans for lunch when my cell phone vibrated. It was my son’s school and I picked it up immediately.

The school nurse told me that Norrin had just thrown up and had a fever of 101. The nurse didn’t need to ask, I knew I had to pick up Norrin from school as soon as possible. I quickly hung up and my mind started to race. I dialed my husband’s cell phone – the call went to voice mail. I slammed the phone in frustration. I emailed my bosses to let them know that Norrin was sick and that I had to leave. Then I called my dad to tell him I didn’t need him to pick up Norrin from the bus.

As a working mom, a call from the school nurse stresses me out. It requires more juggling than usual. And my husband who is in law enforcement, isn’t always available to help. My job offers a little more flexibility. When Norrin was at preschool and kindergarten and he got sick, it wasn’t that big a deal. I left work, jumped on the train to his school and took him home.

But I pulled him out of the public school system and his current school is thirty miles away from my job in Manhattan. By public transportation – it’s more than a two hour ride and then I would have to take a cab from the station to the school. A cab is probably close to a $100 fare. And then I’d still have to get my sick kid back home. The best way to get to Norrin’s school is to drive. Except I don’t know how. And my husband – who does drive – could not be reached. Neither could my cousin who was on the authorized pick up list and closer to Norrin.

I remembered that my best friend’s husband, Frank, had the day off, so I called in a favor. If I could take the train a few stops to their apartment, he’d drive to Norrin’s school and then take us home. I shut down my computer, ignored the pile of work that needed to get done and ran out.

As we drove upstate, all Frank could talk about was the length of the drive. He inquired about the bus pick up and drop off times. I cursed myself for not knowing how to drive, for living so far from an appropriate school.

We were at Norrin’s school in less than an hour. I could tell Frank was impressed with the expansive grounds – the grass, the pool, the picnic tables and playground. I spotted Norrin on the swing set, surrounded by his teacher and two of his favorite assistants.

I walked with Norrin and his teacher to his class to retrieve his school bag. I met four of Norrin’s classmates – they greeted me hello and hugged me goodbye.

On the way home, I sat in the back seat with Norrin, a plastic bag in my hand just in case he got sick. I thanked Frank again.

“This looks like a really nice school,” he said. “Too bad it isn’t closer.”

It was more than a nice school. It was a great school. It was a school that was able to meet all of Norrin’s needs and more. It was a school that gave me peace of mind when I put Norrin on that bus every single day. It was a school that I knew truly cared about Norrin. I did wish his school were closer but it’s our only option. And it was well worth a few extra moments of scrambling on days when the school nurse calls because those days are few and far between.

“Yup…that’s the trade-off.” I pulled Norrin closer to me, brushing his hair with my hand.

What trade-offs do you make for your child?

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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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Including Kids With Special Needs In Classrooms: There Are No Easy Answers

Thursday, February 28th, 2013

Max is in a school for kids with special needs, and always has been, but I often wonder about whether we should consider inclusion for him.

It’s a toughie: We think he’s getting a great education, and the teachers and therapists are outstanding. If he were in a so-called typical class, he’d get pulled out a lot for therapies. I’ve heard, straight from a school source, that the quality of aides in our district’s public schools isn’t up there.

Still.

I long for him to be around so-called typical kids, both because I think they could have a positive impact on learning and for social reasons, too. And then, there’s this truth: Growing up in a special needs hothouse, as wonderful as it is, isn’t preparing him for the real world.

Last night, I watched the documentary Certain Proof: A Question of Worth; it’s about the challenges children with severe cerebral palsy face in the public education system. It really got me thinking about inclusion, as did this infographic on the topic.

Ah, special needs parenting decisions, decisions….

Photo of child writing on blackboard via Shutterstock

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6 Things I Wish I Knew When My Son Was Diagnosed With Autism

Wednesday, December 12th, 2012

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

Norrin on Mother’s Day 2009 – 1 Year after his Autism Diagnosis

The other day I spent some time talking to a former classmate from grade school. We hadn’t spoken since the summer we were thirteen. We have been friends on Facebook for a while but had no interaction until recently. Her son was diagnosed with autism and she wanted to talk.

It’s been a little more than four years since Norrin was diagnosed with autism. And whenever I talk to a new autism mom I am reminded of all those feelings I felt that May in 2008 when I first heard the words: your son has autism. So I listen, I offer words of comfort and advice but I still hear the uncertainty in their voice. Because no matter what I say, I know that only time will ease their concerns. There are so many things that I know now, that I wish I knew then.

Here are a few things I wish I knew when Norrin was first diagnosed:

A mom raising a kid with autism. In the beginning, I was totally alone. I didn’t know a single mom raising a child with autism. And while I had friends I could talk to, none of them understood what I was feeling. No one could point me in a direction. Since Norrin’s diagnosis, I have created a community of parents who not only understand me but understand my kid. And I am grateful that when I have a question or concern, I have someone who will listen to and guide me. 

It’s not necessary to read every book on autism, that first week. On the day that Norrin was diagnosed, I ran out to the bookstore. I purchased five books on autism. I may have bought more books the following week. I was on googling and reading anything and everything I could find on autism. I was overwhelmed. There are a lot of great books on autism but you don’t have to read them all in that week or that month or that year. Take your time. It’s not a race.

It’s okay if you don’t try every single thing someone suggested. Once someone suggested a certain therapy. This person recommended a place in the City and when I looked into it, the cost was way more than I could afford (about $10,000). I remember feeling guilty about not being to afford it. I contemplated putting it on a credit card. In the end, I didn’t pursue it. There will be some things that are simply out of your reach, don’t feel bad about it. Especially if there is no absolute proof that it will work. It’s all trial and error. Don’t go broke trying everything.

There is no one to blame. For a long time I blamed myself. I may have even blamed my husband. The blame game is a waste of time and energy.  

Flapping doesn’t hurt anyone. To flap or not to flap – that is the question when you have a kid with autism. I remember holding Norrin’s arms down whenever he flapped and feeling his whole little body tense up. And every therapist that walked in our door, that was the first behavior I wanted to see eliminated. Now I could care less. If I’m not asking him to do anything, I let him flap. It’s his own way of expressing excitement or happiness. And who am I dictate how he expresses his happiness?

Evaluations are important but don’t read too much into them. The first time I read Norrin’s evaluations I cried. I still have a tough time reading them. It’s not easy to read about all the things your child cannot do. But the thing I’ve come to realize is that Norrin is so much more than an evaluation. He knows so much more than his test scores reveal. I focus on all the things my child can do and how far he’s come.

What do you know now that you wish you then

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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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