It Takes a Village (My speech given at St. John's University 1st Autism Awareness Month event)

When Alissa (the founder of Sprinkles of Hope) first asked me to speak, I was surprised and flattered and nervous.  I thought to myself – what am I going to talk about?  Writing a blog, updating my facebook status or tweeting is one thing – addressing an audience is another.  For the last 3 weeks I’ve been thinking about what I wanted to say – something that would be inspiring and hopeful. 

But last night I came home after a long day of work and a two-hour session of sensory gym with Norrin and I received another rejection letter from a school.  We’re in the Turning 5 process and it’s the 3^rd rejection letter we’ve gotten this month.  Our Turning 5 meeting was canceled the week before it was supposed to take place and I have no idea when it will be rescheduled.  And I have no idea where Norrin will go next year for Kindergarten.  It seems the decision is out of my hands.

March has been a tough month.  I’m far from inspired or hopeful –

I am frustrated.

A few months ago, Dr. Oz featured a show on Autism.  The parents Dr. Oz focused on described their life as “a nightmare,” and their children as “broken.” And Dr. Oz spent a great deal of time on “what causes autism.”

I don’t care what causes autism.  We are beyond that conversation.  The conversation that needs to happen is: How do we provide the proper support and services for our children. 

Autism itself is not the “nightmare.”  The nightmare is dealing with the Board of Education, budget cuts, and insurance companies, Medicaid waivers, never ending waiting lists, lack of services, lack of awareness and lack of acceptance.

The nightmare is calling an agency for services and hearing “Sorry – we don’t service the Bronx.”  Or calling the only after school program for children with autism in The Bronx and being told that there’s not only a 1 – 2 year waiting list but due to budget cuts – the program may terminate by September. 

The nightmare is the financial strain autism puts on a family.  Paying for private evaluations or therapies that insurance companies won’t cover or lawyer’s fees to secure appropriate school placement because our children are not entitled to the best.  Or families taking out 2^nd mortgages to pay for private school tuition – hoping the Board of Ed will reimburse them before the next years tuition is due.  The nightmare is pulling your child out of that program because the Board of Ed hasn’t paid you back and your money has run out. 

Our children are not “broken” and they don’t need to be fixed.  They need to be taught in a way that they can learn.  Considering we’ve been rejected from three schools this month, I am starting to wonder – who will be able to teach Norrin in the way that he can learn.

I’ve been told that I should move – to Queens, Long Island, Westchester or NJ.  Anyplace with a better school district.  But moving shouldn’t be an option.  Or a solution.  And even if I could afford to move, what about the other kids in the Borough that are left behind?

There is talk about restructuring Early Intervention – having parents pick up a percentage of the cost.  When Norrin was diagnosed 2 ½ years ago, we bombarded him with Early Intervention services.  We had a service provider in our home 5 – 6 days a week in addition to his center based program. 

At the time he was diagnosed – he had no language.  He couldn’t point, wave, make eye contact or sit still long enough to complete a simple task. 

But after months of intensive therapies – Norrin achieved all of those things and so much more.  His development has been amazing to watch and we never take a moment granted.  Every milestone is celebrated.  And there are moments, when it’s very easy to forget that there is a diagnosis, moments when he is just a boy and the words - typical or atypical – do not exist. 

The diagnosis has not defeated me, but the system comes dangerously close.  So while navigating the labyrinth of the Special Education System is financially and emotionally exhausting – hope sustains me.

When Norrin was first diagnosed we didn’t know anyone who had a child with Autism.  No friends or family member who can speak from experience and say – your child will be okay.  And there was no greater moment of isolation.  We had to create our own network.  And years later, my blog – AutismWonderland – was born.

But since Norrin’s diagnosis – our nephew and my best friend’s daughter have been diagnosed with autism.  And I want them to have the same level of services that Norrin received.  Services shouldn’t become privilege or a luxury, our children need the services and they are entitled to them. 

We’ve all heard that old proverb “It takes a village to raise a child.”  When it comes to having a child with autism or any other special need – it really does take a village.  It takes a village to support our children and it will take several villages to maintain appropriate services.  One person or parent or therapist cannot fight a system.  It takes every single person in this room to create a village and advocate.  It needs to be a collective effort.  To call, write or email the Governor, Mayor, Cathie Black, Borough Presidents and other elected officials.  We need to tell them what our children need.  We need to become one big loud squeaky wheel. 

Tomorrow is the first day of Autism Awareness Month.  But for me, and many of us here – it’s every day.  And Norrin has shown me the difference a day can make.  So let’s make our every day count.  

(from left to right) Angelica, Kenia, Me, The Boy, Allie & Alissa

Oh Poop!

 

So...we're still potty training.*  Sort of.  We've moved from potty training books to "Everyone Poops" by Taro Gomi .  Which The Boy finds hilarious!  And I get a total kick out of hearing him say the title "Everyone PooTs" - of course, I correct him.  And at that point he says poop properly - which is still cute. 

So, I guess we're poop training.  Because The Boy will just run to the bathroom when he has to pee.    Does he immediately wash his hands when he's done? Not really.  But hey, baby steps, you know.  I'm just happy to have him out of pull ups and in Spiderman undies.  (At least during the day, we still require pull ups at bed time. But that's a whole other beast.  And like I said - baby steps.)

Last night, while trying to write and The Husband was watching a movie, I yelled, "Babe - check on The Boy."  He was too quiet.  And when The Boy is quiet - something bad has already happened or is about to happen.  I was right.

Then it was The Husband's turn to yell - "Better turn the TV off, I'm gonna be a while."

"Need back up?" I yelled.  We live in a 2 bedroom apartment - there really isn't a need for all of this yelling.  But it's what we do. 

Before The Husband had a chance to yell back, I got up and walked into the bathroom.  The Boy was sitting on the toilet, his skid-marked Spiderman undies on the floor and poop smeared on both of his little legs.  A crumpled square of toilet paper in his hands.  He's looking up at us - smiling.

The Husband looked at me.  "I found him sitting here, trying to clean himself."

We both say GOOD JOB!  to The Boy.  And the Boy continued to rip toilet paper in an attempt to clean himself.  Which is great - he's getting it!  Though when it comes to poop - he's hit or miss.  And I went into The Boy's room - sniffing around for poop like a bloodhound - just in case he missed. 

(He didn't!)     

*The Boy is 5 years old and we've been potty training since he turned 3. It's a process... 
  

Light It Up Blue - March 31st

On Thursday, March 31, St. John's University will be hosting it's First Autism Awareness Day. I am extremely honored to have been invited as one of the guest speakers for the Inside of Their World: Candlelight Vigil of Hope segment (8:00pm – 10:00pm | DAC Patio and Living Room).  Please join us.  For more information and/or donations please visit Sprinkles of Hope.

  

World Autism Awareness Day

Light It Up Blue

Thursday, March 31^st, 2011

Light It Up Blue Commuter Breakfast

8:00am – 10:00am | DAC Student Organization Lounge, Room 128

Start your day with a continental “blue” breakfast, information about autism, and a special showing of the movie Temple Grandin.  T-Shirts, Pins and Bracelets will be on sale and all proceeds will be donated to Autism Speaks. 

Light It Up Blue with PS 177

11:00am – 2:00pm | DAC Student Organization Lounge, Room 128

An exclusive School of Education event (invite only)!  The School of Education is sponsoring the LIUB PS 177 by having FUNTIME SESSIONS.  Education majors will be able to join us as we engage with students from PS. 177 in arts and crafts, story time, STJ mini campus tour, coloring, snack time, and a light it up blue special egg hunt!

Autism Workshop

3:00pm – 6:00pm |Concetta Russo, Assistant Professor Human Services and Counseling Course Description: This workshop teaches educators effective strategies to manage behaviors of children with autism. Email: colvinr@stjohns.edu

Light it Up Fun Soccer Clinic in collaboration with our RedStorm Women’s Soccer Team!

5:00pm – 6:00pm | STJ Great Lawn (Rain Location: Carnesecca Arena)

Inside of Their World: Candlelight Vigil of Hope

8:00pm – 10:00pm | DAC Patio and Living Room

Please join the University Community as we gather together in prayer and hope!  Hear from mothers of children with Autism as they welcome us into their world.  Light reception to follow. 

Awesome Autism Quotes: Inspiration, Humor & Reflections by Margaret "Pegi" Price (book review)

Awesome Autism Quotes: Inspiration, Humor & Reflections [Kindle edition].  Margaret "Pegi" Price


"What does not kill me, makes me stronger." ~ Friedrich Nietzsche


This is only 1 of the 135 quotes, in Margaret "Pegi" Price's book, Awesome Autism Quotes: Inspiration, Humor & Reflections.  Price has collected beautiful thought provoking quotes from William Shakespeare, Buddha, Abraham Lincoln, Friedrich Nietzsche, Mark Twain, Leonardo da Vinci, Oscar Wilde, Charles Dickens and Franz Kafka. After each quote, Price writes how it can be applied to autism.  Price also leaves space for the reader to insert their own personal reflections or experiences. 

I can personally say that reading this book has provided all of the above, especially now during our Turning 5 process.  It's definitely a book I suggest all parents read. Price allows you to experience all feelings: fear, anger, love, hope.  She recognizes that we all have good days and bad days.  "If you have tears, prepare to share them now."  William Shakespeare.  Price understands that sometimes we need to cry,  that we "don't have to always be strong."  But she also urges the reader not to be consumed with anger, depression, envy. "This is a world of action, and not for moping and droning in." ~ Charles Dickens. 

The quotes Price has selected will provide even the seasoned parent new insight into the world of autism. While her reflections following the quotes provide comfort to the parent who has recently heard the words: your child has autism.  Acceptance and understanding of autism, doesn't happen over night; it's a process - a journey.  And the quotes within Price's book, explores every emotion of that journey. It's a book to return to, again and again. 

 
Price knows first hand how powerful inspiration can be and how much it is needed.  Price says, "I would get inspiration from books and literature, by holding onto a quotation and making it my mantra that day...[the quotes] helped me get through some of the roughest times."    

Price's son, Sam, was diagnosed at three years old.  The pediatric neurologist that initially diagnosed Sam, offered no hope, suggesting that Price institutionalize her son and "forget about him." Refusing to give up on her son, Price found another doctor who was more supportive of their needs.  At eight years old Sam went from functionally non-verbal to talking in paragraphs.  Currently, he is in high school and thriving.

Price also has her own legal practice, The Price Law Firm.  A divorce attorney with more than 20 years experience, Price's practice specializes in cases with special needs children.  She has written The Special Needs Child and Divorce, A Guide to Evaluating and Handling Cases and Divorce and the Special Needs Child, A Guide for Parents.

Awesome Autism Quotes: Inspiration, Humor & Reflections is written for anyone whose lives are touched by autism.  Prices says she wrote the book to "provide inspiration through difficult times, empowerment during the times when we don't feel so strong, wisdom when we need answers, humor when we need to laugh, gratitude at all times, and peace in the face of chaos."

As a Kindle book, it's extremely convenient.  However, you don't need a Kindle to read the book - it may be downloaded on your PC, Mac, Blackberry, iPhone or iPad.  Providing inspriration everywhere, anywhere, whenever you need it. 

My ISP - Individualized Socialization Plan

" We should not let grass grow on the path of friendship."
   - Madam Marie Therese Rodet Geoffrin

I spend a lot of time focusing on The Boy's social development (facilitating play dates, initiating social interaction, responding to social cues), however my own social life and sense of self is suffering.  And if you're the mom of a special needs kid - I'm sure you know what I'm talking about.

I say no to pretty much every invitation I receive from friends.  No, I have class.  No, I have to take The Boy to sensory gym.  No, it's my late day at work.  No, it's been a rough week.  No, I don't have money.  And even when I have money - still No.  Because I feel guilty spending money.  Especially this year, with all this Turning 5 stuff.  See my post Autism Ain't Cheap.  And I've said No so many times, that the invitations come less and less.

Forget about a romantic night out with The Husband.  Since my mother takes care of The Boy during the week, I hate to ask her to watch him on the weekends too.  On the rare occasion, I do ask my mother to watch The Boy on a Saturday night, I feel like I'm fifteen years old begging for permission to go to a party.  My parents never went out and left us behind.  Ever.  So she makes me feel guilty for wanting to go out. So The Husband and I stay home.  Another reason why I say to no to friends - I don't go out with my husband, how can I go out with my friends?

But this Sunday, on the first day of Spring - I said yes.  And it was nice.  It felt good to sit among old friends, to catch up and just giggle and gossip the way girls often do.  It was nice to eat a meal and not have to stop to feed someone else or wipe a nose.  It was nice to eat and not feel rushed.  It was nice to sit and sip my drink leisurely.

I decided that I would make more of an effort to say yes.  I work hard at school, at work, with Norrin - but cultivating my relationships not so much.  How can I expect The Boy to work on one to one relationships with peers, when he doesn't see me doing it?  So like everything else in our life, I will have to plan it out.  I'm calling it an "ISP" - Individualized Socialization Plan

Short-Term Objectives:

1. Lisa will coordinate time with friends.  For example: Yesterday I emailed my best friends inviting them out for a pre-mother's day evening out.  Planning in advance gives us time to secure child care and plan financially.  When my friend stated that she may not be able to do that due to finances, I said: Don't worry - I'll come over with 2 big bottles of wine.  :)
2. Lisa will secure alternate child care services.  The Husband and I need to go out.  We need to be able to allow friends and/or other family members take The Boy for a few hours. There are plenty of people who have offered to watch The Boy. We need to start collecting on those offers.
3. Lisa will engage in at least one personal activity per month.  No going to class will not count. I never ever take time out for myself.  I am always doing something for someone else.  Going somewhere for someone else.  Going forward I will work on taking time out for myself, by myself.  Even if it's just walking to the corner Starbucks and having a cup of coffee.        

Annual Goal:

Lisa will improve on all relationships: self, romantic, friendships and familial.

As I'm writing these down, I'm a little hesitant.  Can I committ to do this?  Better yet, will I?  I know The Husband is absolutely supportive of me taking time out for myself.  The responsibility to do so falls on me.  Obviously, I won't be able to accept every invitation and some months may be harder than others to carve time out.  But just like I expect The Boy to try and make attempts in socialization and personal development, I need to put forth that same effort.  

"When all is said and done, it is the people in your life, the friendships you form and the committments you maintain, that give shape to your life."

 - Hillary Rodham Clinton     

Why I Won't Shut Up About My Kid with Autism

I am sure I have Facebook friends who are tired of my status updates about The Boy.  Tired of hearing about the ups and downs of our day to day.  And I'm sure, there are a few who are just like "who cares about your  kid with autism." Because if you don't have kids and/or if you don't have kids with special needs - why should you care?   


Last week, a friend asked me to be one of her guest speakers to her undergrads at Lehman College.  At first, I was kind of like - why would anyone want to hear what I have to say?  I can write about autism with no problem.  People can choose whether or not they want to read.  But to talk in front of a group?  That made me nervous.  And I honestly thought of backing out.  I'm glad I didn't. I learned a lot in those 90 minutes.  The class was made up of speech pathologists and social workers.  I talked to them about my blog, my writing and of course - The Boy.  

My friend also invited Gregory Crosby.  And he said something that has stayed with me. And while I can't quote him verbatim, this is the gist: We live in a world where people are on a need to know basis.  But you never know what you'll need to know.


And I thought about how I waited so long to get The Boy evaluated.  I thought of all the signs that I didn't see.  Because I didn't know what to look for. 

With 1 out of 110 children diagnosed with autism, it is more common than childhood cancer, juvenile diabetes and pediatric AIDS combined.  However, everyone knows about chemo and insolin; everyone has a basic understanding of AIDS.  There are still people out there who associate autism with Rain Man.  And I've met people who have never even heard of autism.  If you've never heard of it or don't know much about it, how will you know what to look for?  How will you know when you need to know?  


I remember last June when I tried to send The Boy to a typical after school program. I explained to the director that my son had autism, that he would be attending the program with his SEIT.  I explained all the things that The Boy could and could not do.  But on the first day of the program, the SEIT couldn't make it.  And The Boy was on his own.  When I picked him up, the director said she was surprised that The Boy was "bothering" the other kids, that The Boy was "all over the place."  And then I reminded her that my son had autism. "Yes, but I thought he would just sit in a corner," she said.  This was an older woman, a woman who claimed she had worked with children for more than 30 years.  (Needless to say, The Boy never returned.  And I felt incredibly guilty for putting him in that situation.)

When The Boy was first diagnosed.  I didn't know anyone who had a child with autism.   I had to create my own network.  I didn't have a friend or a family member that had a true understanding of autism.  No one could really tell me where to go or who to talk to.  And there was no greater moment of isolation.   

So that's why, I go on and on about my kid and why I innundate my FB page with autism stuff.  I want everyone single person on my page to know that, yes - I love someone with autim.  That it's not a disability to fear, be ashamed of or express condolences over. Like with raising any child - there are good moments and not so good moments.  The diagnosis will not defeat you, only ignorance will.  
  
So here's the thing, you NEED to know about autism. Period. Yes, even if you don't have kids. Even if you have typical kids.  Whether you're a grandparent, aunt, uncle, cousin, sibling or friend - you all need to know.  Because if you don't, the day may come when you'll need to know.  And you'll have nothing to say.  And it'll be the time in your loved one's life when you will want to provide some kind of support, comfort and more importantly - hope.  But you won't be able to offer any of those things, if you don't have an understanding of autism.      
  

April 2nd is International Autism Awareness Day.  April is Autism Awareness Month.  But it should be everyday, until every one understands all the wonders of autism.    

For more information on autism:

WebMDs signs of autism

Autism Speaks

Autism Society 

New York Familes for Autistic Children

National Autism Association

Kids Health - Autism

The Gift Giver

Every time you smile at someone, it is an action of love,

a gift to that person, a beautiful thing.” ~

Mother Teresa of Calcutta

The Boy wakes up most nights, stumbling into our room, waking me up.  In the early hours of the morning, hours before the sun rises, he is his most talkative and engaged.  He will answer your questions, if you're awake enough to ask.  He'll make requests "Mommy, can I have a drink?"  He'll lay beside me, put both hands on my face and smile - looking right into my eyes.  And in those moments, it's easy to forget the challenge of our day to day.

Last Tuesday, we interviewed with a school.  And after twenty minutes, the Director said The Boy wouldn't be a good fit.  "He's too self-involved.  It takes too long to bring him back."

It's true.  The Boy is self-involved.  He does lose focus and he does go off someplace.  Still physically present, but his mind is someplace else.  And it will take several seconds to get his attention again.  For him to return to you from the unknown.

The Director - who was very sweet - walked The Boy and I out of the school. The Boy looked up at me.  "I had fun with the school."  He whispers the words almost uncertainly. "I had fun..." is a phrase he's been taught to say after leaving some place. 

And then The Boy smiled. The smile that I love. The smile that makes me smile no matter how I'm feeling.  The smile that reaffirms, that he is really with me; I am a significant part of his world, everyone else, not so much.  His smile is his gift to me, a replacement for the spontaneous speech that he has yet to master.

And let me tell you - his spontaneous smile makes a damn good substitute.  

Tangeled in Red Tape

I feel like I'm having a Lifetime Movie moment (not that I've ever seen a Lifetime Movie) when absolutely everything goes wrong for the heroine and all seems bleak but you know that it's all going to be okay, you just don't know how all the crap is going to work itself out.  Except I'm (a) not a heroine and (b) I'm not so sure things will work out.  That's where I am.


Because so far, March sort of sucks.

We're still in Turning 5 limbo - thanks DOE for canceling our meeting at the last possible second.  No explanation.  No reschedule date.  All we can do is wait for their call.  


We're still looking for an attorney - though we've narrowed down our very few options.  Thank goodness for 401k loans.  Because yes, it's getting to that.


We have one school acceptance so far.  And I'd say "Hooray" - except that the yearly tuition is our annual income and I'll need to sue the DOE every single year that The Boy is there for tuition reimbursement.  It's much more appropriate than the public school District 75 options but completely unaffordable for any average person.   The financial burden is overwhelming.  (Let's not even discuss the guilt that goes with this.)


We've had one school rejection so far.  Ouch!


We're still anxiously awaiting for the school of our dreams - the private Board of Ed approved school.  I'll dare not speak of it any further.      


We've just had another SEIT "break up" with us via text message.  I like to use the term "break up," because they always use the same excuse "It's not you, it's me." Blah, blah, blah.  So tomorrow we'll start with a new SEIT. It will be The Boy's 5th home based therapist since January.  News flash: The Boy needs consistency!


But I'm especially disappointed, because this last SEIT was an ABA SEIT.  And when this woman called me  - I cried.  I said, "Are you serious?  Do you know how long we've been waiting for you?!"  (I had been told by the District that ABA SEITs do not exist.) And after she came to our apartment and agreed to take our case, I threw my arms around her.  That was last Wednesday.  Today I got the break up text.  Rejection sucks.  Especially when it's over something lame like street parking and Cross Bronx traffic.


I had begged this woman to take our case, I cried - in front of her.  Now for those that know me, know I'm a cry baby.  I will cry over a cell phone provider commercial. But for me to cry in front of a stranger - someone who has control over what The Boy needs - takes a lot.  Nothing makes a mother more vulnerable than not being able to provide something your child needs.  


Not wants.  NEEDS.  The Boy needs these services.  And if it were up to me, if I had the financial means, I would not go through these hoops.  I would not be tangled in red tape.  I would not have to justify and advocate for the appropriate services.  Strangers and bureaucratic agencies would not have a say over what The Boy needs.


The Boy is active, a rough and tumble scruffy boy who loves to run, jump and hop.  His shoes are often scuffed, dusty with dirt.  But when he needs new shoes, I buy them.  Because I know he needs them.  There are no scheduled meetings.  No reports to read over.  No justification.  No discussions about whether or not he really needs the shoes.  No doctor notes required.  Because when The Boy needs new shoes - it's pretty obvious.


And since The Boy has an autism diagnosis.  Since The Boy has a significant delay. Services should be the same way.  The need is obvious. It should not have to be so hard to get them.              

Autism & Angry Birds!

I don't know about you all.  But I'm addicted to Angry Birds.  I play it at home, on the train, during therapy sessions.  The Boy loves it too - laughing while I play - he calls it "Birds Go Boom.' The Boy likes to see me lose.

Last week I had my CPSE Annual Review meeting.  It went well, so much better than I anticipated.  We got to keep our hours and we switched SEIT service provider agencies and I'm satisfied.  I was so happy with how the meeting went - I even sent the CPSE administrator a thank you card!  Because ultimately, she was great.  And then the bomb drops.  Our Turning 5 meeting scheduled for next week gets cancelled.  No explanations.  No reschedule date. 

You know when you're playing a game of Angry Birds and you're just on a roll.  Smashing through wood, cement and ice easily.  Three stars!  Move on the next level.  And then - you get to a board that you cannot pass.  Your birds are bruised, unable to penetrate through, flying above target and the pigs remain unscathed, laughing at you. 

That is exactly how I'm feeling.  I am the birds, the Department of Education are the pigs.  And the Turning 5 meeting is the wood, cement, ice - the obstacles I'm smashing up against with no success.  I am stuck on a board, that no matter what I try I cannot seem to pass.  But still I keep playing.  Eventually I'll win.  Maybe with three stars. Maybe not.  Or maybe I'll be lucky enough to get the Golden Egg!  Or maybe not.  But I'm determined to get to the next level. 

The Other Kid by Lorraine Donlon (book review, giveaway - CLOSED)

The Other Kid written by Lorraine Donlon is a draw it out guidebook/journal for children dealing with a special needs sibling.    

Written in clear and simple language, The Other Kid is an excellent learning tool for parents, grandparents, educators, special education service providers and social workers. Targeted for children between five and twelve years old, The Other Kid, validates the complex feelings of being the sibling to a brother or sister with special needs.  It encourages siblings to express their feelings through art and writing.  The Other Kid also allows siblings to appreciate their brother/sister, to respect and accept their strengths as well as their weaknesses. It also highlights the similarities between siblings.  More importantly, The Other Kid is the beginning of an honest conversation.

While The Boy is an only child, I would highly recommend this book to parents with multiple children.  I also believe that this book should be added to every school library and/or used with sibling support groups.  It's important that children understand their feelings.  The Other Kid supports awareness and acceptance.  

 The sibling of sisters with special needs, Donlon wrote this book from her own experience. Born in 1959, Donlon was considered "lucky" to be "normal."  However, she admits that she "didn't feel lucky" and often felt "guilty" for being a typically developing child while her sisters were  "very low functioning" and "mostly non-verbal."  Donlon shared that she "created The Other Kid as a coloring book because I wanted very small children to know that all the feelings they were experiencing were nothing to be ashamed of - and actually a very normal response to a very stressful situation.  Letting kids have a place to draw and talk about what they are feeling also gives caring parents insights into what "the other kid" is feeling so concerns can be addressed in a loving and supportive way."

Donlon's advice to parents: Find a way to have "alone" time with the typically developing child.  Kids with special needs demand a lot of time, energy, and resources. It's  important to remember that the typically developing kids need attention too - special 1:1 time where they can just be kids and feel important.


Donlon's advice to "The Other Kids": It's OK to need your parents too.  It's OK to have really strong feelings - both positive and negative - and that there are caring adults who will listen. It's also important for kids to know they are not alone - and can feel very reassured when they realize other siblings have felt the same way.

The Other Kid is available on Amazon for $10.95 in English and Spanish (El Otro Nino).         


GIVE-A-WAY: To win your complimentary copy of "The Other Kid" -

1. Leave a comment for this blog post - also specify if you want English or Spanish edition. 
2. Send me an email at autismwonderland@gmail.com. (Even if you think I have it) If you DO NOT send me an email, I will NOT be able to contact you if you win.  In your email, let me know you've left a comment and specify whether you want the English or Spanish edition.  

In order to qualify for contest you MUST complete steps 1 and 2.    

You may leave as many comments as you like.  The more you comment, the better chance you have of winning.  Contest ends on Sunday, April 17th at midnight. Winners* will be announced Monday April 18th, 2011 on my facebook fan page AutismWonderland.blogspot.com and on my twitter page @Laliquin.  I will contact the winners via email to arrange shipping.**
 
 * Winners will be selected via random.org
**Will only ship within the United States. Shipping is free of charge.  

Note:  A complimentary copy of this book was provided to me by the author. The opinions expressed in this post are my own. 

Think Before You Call Someone/Something - Retarded

I can't tell you how often I hear the word - retard.  By friends, family and even - surprisingly - many therapists and special education teachers.  Thrown out casually and often without any real offense.  It's become part of every day vocabulary, a slang term.  I never say anything when I hear the word.  I don't correct people, even though it offends me.  Consider this a warning.  I'm tired of hearing it. 

I admit, it's a word I've used myself. But I'll never forget the day when it was wiped out of my vocabulary.  It was while we were touring schools for The Boy - right after his diagnosis. The Husband and I were in sitting in the waiting room of Harry H. Gordon school (see NYC resources for more info).  Frustrated with my service coordinator, I said, "This whole thing is f***ing retarded."  The Husband looked at me and whispered my name, like I was a little girl being scolded.  I looked at him in surprise. "What?"  I really didn't know.  He then said, "We're in a special needs school..." I remember feeling really ashamed.  For saying it then and for every single time I'd said it.  Especially because I have a younger sister who is diagnosed as Mentally Retarded.

My sister who works at IKEA, goes to the gym five days a week and is a talented artist would never ever use the word retard to insult someone.  Though I doubt she knows the exact term of her disability.   We've always referred to her as being "a little slow."  Quite honestly, I never understood her disability until becoming a parent of a special needs child.

So for someone to use the retard as an insult, is offensive.  Not to the person or thing that is deemed 'retarded,' it's insulting to ALL individuals and family members of ANYONE with special needs.  Mental retardation is an actual disability, it's an IEP classification.  There are parents, care givers and adults fighting for services, for equality.  People with developmental/cognitive disabilities are people worthy of respect.  They are not deserving of ridicule.

So I'll say it again.  Because I've never really said out loud before. The word retard as an insult offends me.  When you use that word - you are offending me.  You are offending my family.  You are offending everything I advocate for.  So please,  think before you speak.  Think before you say the word.  Because ultimately, if you are the "superior cognitive thinker," you can think of an insult without degrading our most vulnerable population.

I hate when this word is said in front of The Boy.  One day he may ask what it means.  And I'll have to explain to him.  The right definition and the wrong definition.  

The people I've met who've been diagnosed on the Autism Spectrum, people with developmental/cognitive delays anddisabilities - are honest, kind, sweet and genuine.  They would never say anything or do anything to intentionally hurt anyone.  They would never consider a disability an insult, but a sense of empowerment, of personal achievement, of defying the odds; there is a pride and  resilience within them.  When you use the word 'retard' to insult someone or something, you take all of that away from them.  So instead of insulting them, maybe we can learn from them.  

[It's late, I'm sleep deprived.  Please excuse any typos - I'll revise in the morning, after coffee.]

March Madness

So it's been a crazy week and while I've had plenty to blog about (and I will blog about it - later this week), I have been running around like a maniac.  Between work, home, graduate school, and Turning 5 - I'm pretty much done.  By the time my day is over, I'm beyond physically tired.  I'm mentally exhausted.  Truth be told - Turning 5 is kicking my ass.  This process has been extremely difficult. Emotionally, physically, mentally and financially draining.  The DOE is like a vampire slowly sucking my blood, draining me dry.  In the last eight days, I've had at least four major break downs.

Am I asking the right questions? Touring the right schools? Filling out enough applications?

Did they get our application?  Why haven't they called?

Is Norrin what they're looking for?

Do I really need a lawyer?

Will I have the money to pay for a lawyer?

What will happen?

Will it all just work out?  I am sure it will.  But some certainty would be nice.

The thing with Turning 5 is that you only have so much control over what's going to happen.  And I'm scared.

But - GOOD NEWS! - we had our CPSE annual review and I went in well prepared to fight for continuation of services.  (Our CPSE administrator said home-based SEIT hours may be reduced from 10 to 4.)  So I had my evals highlighted, pages tabbed.  I created an agenda, ready to drop "as per Section 200. 13..."  Before I could get to any of that, I heard "all services remain the same." Sweet Victory!

And we've already interviewed with the school of my dreams.  We've had our CPSE annual review.  We've spoken with a few lawyers.  I've toured my first of five District 75 public schools.  I attempted to register for kindergarten (at my zone public school - even though I know he cannot function in a typically classroom). We have another school interview coming up.  AND, our Turning 5 meeting is coming up.  The mother of all meetings.  So for the next few weeks, blog posts, may be short and sweet.