Thursday, June 30, 2011

This Bed Ain't Big Enough For 3

Before I became parent, I had all these fancy ideas of the kind of parent I would be.  Of the kind of child I would have. 

One of my ideas was: I would not let my child sleep in our bed. 

I stuck to this during the first 2 years.  Even on The Boy's first night home, I gave him a bottle and put him in his crib to sleep.  I was setting a precedent.  And for a while, it worked.

Then, shortly before his 2nd birthday we converted his crib (after he learned to climb out) to a toddler bed -The Boy FREAKED OUT!  I mean - hysterics.  I couldn't understand what the big deal was.  This was before the diagnosis.  We tried everything to get him to fall asleep by himself.  Looking back, it makes sense - we changed his routine. 

The Boy would fall asleep after a few hours of crying, but always wake up in the middle of the night and wander into our bed.  We used to fight it.  Or rather, I used to fight it.  Walking him back to his bed 4 or 5 times during the course of the night.  I never really succeeded. 

And once we got the diagnosis, all of my pre-paternal parenting ideas needed to be modified or thrown completely out window.

The Boy reading a bed time story 
in OUR bed
It's three years later and The Boy has a twin bed.  But still every single night, he'll wake up and come into our bed.  I don't even fight it anymore.  Because on those nights where I fought, neither one of us got any sleep. So when he comes into our bed, I just make room.

The Boy will sometimes lay down across the bed at our feet.  Which means, I have to pull up my knees so that I don't kick him off.  It's not comfortable.  And The Husband often falls asleep on the sofa, so that he stretch out his legs without worrying. 

But last night, The Husband fell asleep in our bed and The Boy climbed in between us at about 3 am.  He's a big kid.  He takes up A LOT of space.  His size 13 foot is in my back or his legs across one of our stomachs or his hands on my face or arm across my neck. He kicks and squirms and steals the blanket.  Our queen size bed seems to get smaller and smaller every night.

I am hoping that eventually, The Boy will no longer be comfortable sleeping in our bed and stay in his own.  Because I certainly cannot afford a California King.        

Wednesday, June 29, 2011

Words With: Laura Shumaker

AW: What was your first reaction to your child's diagnosis?
LS: I was sure that the psychologist got it wrong. While I knew something was not quite right, I was determined to fix it.

AW: What was your defining moment of acceptance?
LS: Matthew was ten years old, I was wiped out from trying to manage his disruptive behavior, and it hit me that his condition was life long. It was a dark time, but once I grasped the concept, I knew I had to accept it and move forward.

AW: What inspired you to start your blog?  Your book?
LS: I was inspired to write my book because of family and friends misconception that Matthew was a burden to me. How can a child that you love so much be a burden? I wanted to explain,  and hoped that my story would help others learn to love and accept Matthew, quirks and all, and teach them to be more tolerant in the differences of others. I was inspired to write my blog to continue the conversation!

AW: What has been your most rewarding aspect of being special needs writer/advocate?
LS: I feel like I have helped a lot of people. I think that when parents read about my challenges raising Matthew they realize that they are not alone. I try to show how I solve problems so that they feel empowered to tackle their own challenges.

AW: What advice would you offer parents of recently diagnosed children?
1) Download the 100 day kit from Autism Speaks. What a great tool.
2) Allow yourself time to grieve and do not blame your spouse!
3) Build a community of other parents like yourself.
4) Remember that your child has a place in the world
5) Learn as much as you can-knowledge is power
6) Keep your sense of humor!
7) Pray for patience

AW: Feelings on diagnosis in 6 words or less.
LS: Hard, but character building!!
Laura Shumaker has also contributed to the Through the Looking Glass (TTLG) series: 
Autism and Parenting-5 Tips to Reduce Stress
Laura Shumaker is the author of A Regular Guy: Growing Up With Autism and is a City Bright for the San Francisco Chronicle. She has contributed to several anthologies, including Voices of Autism, A Cup of Comfort for Parents of Children with Special Needs,Writin’ on Empty, and the forthcoming Gravity Pulls You In. She is a regular contributor to NPR Perspectives and a columnist for 5 Minutes for Special Needs. Laura’s essays have appeared in The New York Times, the San Francisco Chronicle, the Contra Costa TimesLiterary Mama, the East Bay MonthlyThe Autism Advocate and on CNN.COM.
Laura speaks regularly to schools, book and disability groups.
She lives in Lafayette, California with her husband Peter and her three sons.

Tuesday, June 28, 2011

Stepping Up. Melting Down.

I will never forget walking into the Harry H. Gordon (HHG) school for the first time - it was mid June, 2008.  I had no idea what to expect of a special needs program.  We had just received the diagnosis three weeks before touring HHG. 

The Boy on his first day of school

At the time we toured the school, The Boy had no language, he couldn't point a finger.  By that September he had 5: hi, bye, no, baby, go.  He could also say letter A - E.  And he could sign: give me, more, finish and play.  I remember putting him on the short yellow bus for the first time that September.  So scared.  So uncertain.  Still doubting the reality of the diagnosis.  I remember The Husband saying, "It's just to help him catch up.  He'll be in a regular school by kindergarten."     

It's three years later.  And now it's time for him to move on.  He has more than 5 words - hundreds, maybe thousands.  He knows all of his letters.  He doesn't need to sign anymore.  While his speech is not always spontaneous, he can get his needs met.  But he's still not ready for "regular" kindergarten.  It's okay, we've kind of let go of that.   

Last Friday was his "Stepping Up" Ceremony.  The program said the kids would sing two songs: Sesame Street's "Sing" and Laurie Berkner's "The Story of my Feelings."  Before leaving the house, I stuffed tissues in my bag, thinking I would cry. But there was no time for tears. I watched as The Boy refused to come into the auditorium and had to be coaxed in by his teacher.  As I walked back to my seat on the other side of the auditorium, I could hear him crying as his classmates sang.

After a good 5 minutes of listening to The Boy cry, I got up and walked around to where he was. He was sitting in his teacher's lap, fingers in each ear and tears streaming down his face. There are moments when it's very easy to forget about The Boy's diagnosis. This was not one of the moments.  In that moment, the diagnosis was painfully obvious. And instead of celebrating and enjoying the moment, all I wanted was to get the ceremony over with and get him out of there.

For the millionth time, I questioned my decision for September.  Could The Boy handle being in a typical school?  Even if it is a special class for kids on the spectrum?  If a Stepping Up ceremony could trigger a serious melt down - what will he be like during an assembly?  What will the first day of school be like?

I wore a pretty dress.  The Husband was dressed up.  So was The Boy.  My parents also attended.  I wanted to take a nice family picture.  But by the time the ceremony ended, I was mentally exhausted and my stomach in knots, thinking about September.  We rushed through a few pictures.  Because even though The Boy stopped crying, he was not in the best of moods.  And when he says "it's time to go," I know it's time to go.

We decided to go out for an early dinner and as soon as The Husband started driving, The Boy began to sing "The Story of my Feelings."  It's a good feeling, hearing your child sing.  It's something he's been doing a lot lately.  Singing to himself, hitting all the notes.  The ceremony wasn't what I had expected it to be, but in its own way, it ended exactly the way I wanted it to. 

The Boy's time at HHG isn't over just yet.  There's still the summer program.  Thank goodness. 




Monday, June 27, 2011

CARS 2 - Sensory Friendly Film Screening July 2nd

I don't know about your kid(s), but The Boy has been anxiously awaiting Cars 2.  We rarely go to the movies as a family, we've gone twice, actually.  This Saturday, July 2nd at 10:00 am, we're taking The Boy to see the sensory friendly film screening of Cars 2 at a participating AMC theatre.  If you haven't ventured to a movie, the sensory friendly film screenings are the perfect introduction.  It's also a great way to network and meet other parents.    

The Sensory Friendly Film Screening initiative began in 2008, when AMC Entertainment partnered with the Autism Society of America to allow families living with autism and other disabilities to experience the pleasure of the movies – with a few tweaks.  Many children on the autism spectrum have sensitivities to light and sound, are on special diets and have extreme difficulty waiting and sitting still.  During the Sensory Friendly Film screening, the lights are not completely dimmed, the sound is turned down, families are permitted to bring in their own gluten free and casein free snacks, no previews or advertisements will be shown and most importantly AMC’s “Silence is Golden®” policy does not apply.  Your kids can move around, talk and laugh out loud; No one will stare or tell your kid to be quiet!  

*Ticket prices may vary. All dates and times are subject to change

Below is a listing of participating AMC theatres in New York.  Please go to Autism or to see the complete listing of theatres in the United States.

New York
AMC Maple Ridge 8 (4276 Maple Rd Amherst, N.Y. 14226)
AMC Bay Plaza 13 (2210 Bartow Ave., Bronx, N.Y. 10475)
AMC 84th Street 6 (2310 Broadway, New York, N.Y. 10024)
AMC Loews Stony Brook 17 (2196 Nesconset Highway Stony Brook, N.Y. 11790)
AMC Vestal Towne Square 9 (2425 Vestal Parkway, Vestal, N.Y. 13850)
AMC Webster 12 (2190 Empire, Webster, N.Y. 14580)
AMC Palisades Center 21 (4403 Palisades Center Drive, West Nyack, N.Y. 10994)
AMC Galleria Metroplex 16 (1 Galleria Drive, Middletown, NY, 10940)

Sunday, June 26, 2011

Loving Lampposts: AW Sunday Review/ Q&A with Todd Drezner

The beginning of Todd and Erika Drezner’s story is a familiar one.  They received an autism diagnosis for their son, Sam, shortly before his third birthday. However, their initial reaction to Sam’s diagnosis is not often depicted in media.  The Drezner’s didn’t believe Sam’s life “was doomed to be a tragedy.” 

In Loving Lampposts, documentary filmmaker, Todd Drezner, goes beyond his own personal journey with autism.  In 83 minutes, Drezner manages to explore the neurodiverse autism community, the “recovery movement,” and various treatments and methodologies while posing a series of thought provoking questions/statements throughout. 

Loving Lampposts features over 30 parents, adults with varying levels of autism, doctors and other experts in the field.  Unlike other documentaries, Loving Lampposts provides a broad and honest view of a complex disability. 
One featured mother, Kristina Chew, said, “Recovery isn’t the point anymore.”  All Chew wants for her son, Charlie, is to help him.  Parents of special needs children often feel guilty.  It’s natural to want to try every possible treatment, and to feel guilty if you don’t.  Hearing Chew’s (along with the other parents featured) journey towards acceptance may enable parents to move forward. 

Society and media have conditioned parents to fear autism.  Mainstream media rarely features adults living with autism (many still associate autism with Rain Man)Loving Lampposts features adults on the spectrum living full lives.  It's  begun a much-needed dialogue around individuals with autism.  It portrays autism with respect, dignity and understanding.  Autism is a different way of being and Drezner believes that while some behaviors are challenging, they are nothing to fear.  Loving Lampposts allows parents to embrace and accept autism from the beginning of diagnosis.
One of the most compelling aspects the documentary presents, is the distinction between “high” and “low” functioning autism.  By challenging these labels, Loving Lampposts, changes the overall perception of a person with autism.  As Stephen Shore states, “The potential of those with autism is similar to anyone else's – it’s unlimited.”  Diagnosed with autism in 1964, Shore was originally recommended for institutionalization.  He is currently a professor at Adelphi University. 

The overall theme of the film is not to “cure” individuals with autism or help them fit in, but rather help them find their own place within society.  Loving Lampposts is a breakthrough documentary, poignant, informative and a possibly controversial film.  It’s a must watch for every parent.  Especially for parents, hearing the words “your child has autism” for the very first time. 

Ultimately, Loving Lampposts is a documentary for everyone.  For parents and caregivers of children with autism – it will provide hope.  If you’re a teacher, it’s an amazing learning tool and should be shown in every classroom.  And for everyone else, it will provide insight.  Loving Lampposts is about acceptance, and how we can provide the “best possible life” for individuals with autism.

For more information please visit Loving Lampposts Movie.
Q&A with Todd Drezner 

AW: In the Director's Statement you stated that you didn't react to the diagnosis, "like many autism families that are depicted in the media."  What was your initial reaction?

TD: Much of what we saw in the media was focused on children who had regressed and lost skills.  There was a sense among many parents in these stories that they had somehow "lost" their child.  We did not feel that way with Sam.  Luckily, he did not regress; he was very much the same kid the day before the diagnosis as he was the day after it.  Certainly, we were very concerned about how to support him and about what his future might hold.  But we felt that he was the same kid as he had been all along, and that was a great relief.

AW:  "Loving Lampposts" has received a lot of praise - what has been the most rewarding aspect of making the documentary?  

TD: During the actual filming, the most rewarding part was to meet the many great people who appear in the film.  I would not have gotten to know Lila Howard, the almost 90 year old mother of an autistic son diagnosed in the 1950s, if I hadn't made the film.  Hearing about the challenges she overcame to give her son a fulfilling life should make all of us dealing with autism today feel very lucky.  I also met fabulous autistic adults who are doing great things in the world both in spite of and because of their autism.  And many of the parents of autistic children I met are truly inspiring in their acceptance and support of their children.

Since the film was released, I've most enjoyed some of the individual reactions.  A medical student from Michigan State wrote to tell me that the film would help him if he ever has to treat a patient who has autism (for a medical issue not relating to autism).  A mother came up to me after a screening to tell me she was going to change the way she interacted with her autistic son.  Many people have written to me to tell me that the film gets autism right.  I always hoped the film could make a small difference in the world of autism, and it's great to see that it has.

AW: What advice would you give to new families receiving a diagnosis? 

TD: I think it's good to take a deep breath and realize you're at the start of a long journey.  Every child -- autistic or not -- grows and develops.  We don't expect a typical child to be the same at age 18 as he is at age 3, but with autistic children, we sometimes worry that they will always have the same issues and challenges.  I think it's wise to connect with some autistic adults so that you can begin to imagine how your own child might develop.  Autistic adults have dealt with most of the issues you will be dealing with, and they can be a great resource. Try to remember that you will be providing your child lots of support, and he or she will develop and make progress.

AW:  Has having a child on the spectrum changed you?  If so, how? 

TD: I don't think I expected to be as much of a public advocate for my child as I am, and it's not something I would have necessarily chosen.  Ultimately, though, I feel that if my wife and I are not advocating for Sam and asking the world to recognize his strengths, no one else will. Autism is much more common than ever, but still relatively rare overall.  For that reason, raising an autistic child is something of a public act.  I think people look to parents of autistic children for cues about how they should treat autistic people, and I think we have an obligation to model acceptance and support even if what we're accepting and supporting is sometimes unusual behavior.  So my wife and I have taken on that role, especially because I've made the film, and I think we're happy to do so even though we hadn't planned on it.  

note:  A complimentary copy of "Loving Lampposts" was provided to me by Cinema Libre Studio.  The thoughts are my own and have not been influenced in any way. 

Thursday, June 23, 2011

Autism Moms: A Camaraderie of Soldiers

Yesterday I took The Boy to his last "official" session of sensory gym for the school year.  There's a male therapist there who jokingly refers to the waiting room as "The Women's Group."  Because the mothers in the room talk, gossip, complain (usually about The Board of Ed), exchange advice, laugh and sometimes we cry. In the last year, I had become close to two mothers in particular.  Every week, they were there to listen to our Turning 5 saga, to lend support, to listen.  And it was comforting having these conversations without having to stop to explain a term or an acronym.  These moms - got it.

Anyway - yesterday I had to say goodbye to Liz and her daughter, Izzy.  Izzy was moving on to another school and would no longer require the services of the sensory gym.  Her new school had an OT and sensory gym on site.  Every week, upon seeing me Izzy would walk up to me and ask to touch my earrings.  Yesterday, I made sure to wear my favorite pair - I knew it would make her happy.  At the end of Izzy's session, I hugged Liz goodbye and wished Izzy luck on her first day of school.  I told Liz I'd miss her and that I'd keep in touch.  Maybe we'll meet for coffee, I said, I want to hear about Izzy's first week at her new school.  

Yesterday also got me thinking about the two other mothers (Judy and Caroline) that I'd gotten close to this year.  The mothers who toured and applied to the same schools I did.  Judy's son attends the same school as The Boy.  The started out in the same EI class.  And Caroline, I met at one of the tours.  During the tours, I'd run into the same parents, their faces may have been different but the expressions always the same: worried, concerned, stressed out, tired, anxious, frustrated and still just the slightest bit hopeful.  I remembered Caroline because she looked like someone I knew.  We exchanged emails during one of the tours and since then every few weeks or so, we'll exchange an email.  It was the same with Judy.  We'd text or email to "check in."

And even this blog site and my facebook fan page.  The support and words of advice that I've received from other moms, moms going through the Turning 5 process and the Turning 5 veteran moms.     

I needed that extra support. I'm grateful for it.  It was a comfort to know that other mothers were feeling all the things that I was feeling.  That I am not alone.

Recently I came across an article entitled "Autism Moms Have Stress Similar to Combat Soldiers" and it's true.  And similar to the stress of soldiers, autism mothers also share a soldier's sense of camarderie.  I think our bond is different than a typical friendship. Aside from being mothers, autism links us together.  And as much as we may value our indivual friendships (outside of the autism community), our bond is necessary.  Our "women's group" is vital to our sanity.  Because unless you've been through through the trenches of autism, battling the Board of Education, you have no idea what it's like to stomp in our combat boots.

So thanks to every mom that helped me get through this last year.

Just as soliders have a creed, so should we.  This is my adaption -
I feel like the Private Benjamin of Autism Moms - a frivilous woman walking into a committment on a whim and discovered, it's much harder than she ever imagined.  But in the end - Private Benjamin kicks butt! 

Wednesday, June 22, 2011

Wordless Wednesday: How Can You Help?

Came across this video a few weeks ago on facebook.  It's worth watching, especially if you're a Special Needs Professional, Service Provider or Teacher.  Thanks for sharing so many great stories Margie! To get your daily Autism News Post follow her blog:

Tuesday, June 21, 2011

Best of the Best, Edition 7: Media and Kids with Special Needs

This month's Best of the Best Edition focuses on Media and Special Needs Kids and I'm proud to have my post - Managing Screen Time. Easier Said Than Done included. Once again, Danette Schott, founder of S-O-S Research, has collected over 25 posts from various writers.  The subtopics include: Advice for handling media, Positive Experiences with Media and Negative Experiences with Media.  It truly is a privilege to be included with such inspiring parents and writers.  I thank Danette for providing the platform for us to share our work and to learn from each other.   


And, in case you've missed it...previous BoB posts:

Anxiety and Stress (Edition 6)
Book Reviews (Edition 5)
Family Life (Edition 4)*
School Issues (Edition 3)
Social & Play Skills (Edition 2)
Autism and Treatment Options (Edition 1)*

*AutismWonderland not featured

Monday, June 20, 2011

The Weight of Autism

I'm not talking about the emotional weight, the everyday concerns, worries and fears.  I'm talking about the physical weight. From stress, overeating, ordering take out because I'm too tired or too busy to cook, and the 1 or 2 glasses of wine a night (3 on the weekends), to help me sleep.

I remember weighing 75 pounds; I was one of those scrawny girls, I was boyish, flat all over.  Envying the other girls in gym class because they were wearing bras and I had absolutely nothing to train.  I was that adolescent girl, faithfully exercising while reciting "I must increase my bust" - thanks Judy Blume!  Then puberty hit (better late than never). And I developed an hourglass figure that I proudly embraced.   

During my pregnancy with The Boy - I gained a whopping 63 pounds.  Yeah, I got a little crazy.  I ate cheetos, crispy cremes, cinnabons, macaroni and cheese and fried chicken (almost every day for lunch); I drank a pepsi with every meal.  I went berserk.  I wasn't eating for two - I was eating for a football team.

And while I've lost half of the 63 pounds I gained, the last two years especially I've gone up and down dramatically on the scale.

Big Bottom Line: I'm overweight.  At least that's what my Wii Fit told me the other day when I stepped on the scale for a body test.  I watched painfully as my little Mii  plumped up.  Her pretty pink shirt stretched out as the bulge around the belly expanded.  She had never done that before. :(

And that's when I knew.  The stress of Turning 5 had taken it's toll in more ways than one.  No wonder men were getting up for me on the train lately!  (Today was the 4th time in a two week period.)  

I thought I had been hiding it well...I guess not.  I wear dresses a lot and I change outfits about 5 times before walking out the door.  I will ask The Husband "Does this make me look fat?"  And since he's so used to hearing the question by now, he'll automatically say "no" without even looking.

I know that I'll never return to my original pre-pregnancy size - I'm okay with that.  Even though, I still hold on to my favorite pair of designer jeans, hoping against hope.  But at this point, I just want to be able to look in the mirror and feel (physically) good about the woman I see...I want to feel healthy.

More importantly, I want to be and stay healthy.  I want to run around the park with The Boy and not get out of breath or feel winded.  I want to (crossing fingers) have another child and be healthy enough to keep up with two kids.  I want to (try to) live medication free without any health issues.    
I used to enjoy working out.  I used to go to a gym.  I used to eat healthy.  I used to love shopping.  What the heck happened? 

Now that The Boy has an appropriate school placement, I can use this summer to remember the woman I used to be. 

We'll see...      

Sunday, June 19, 2011

TTLG: My Three Sons by Joseph Fontanez aka The Husband

Raising a boy with autism these past years has been a challenging and daunting task.  Initial expectations have been replaced by new ones.  Skills that parents of  "typical" children take for granted are met with over ecstatic zeal.  Some fears that I had after the diagnosis have subsided, while new ones arise and I find myself with new trials to face and new triumphs to celebrate.

To parents like me these statements are just me beating the proverbial autistic dead horse.  I just hope I can provide some insight and help you see what I see.

A picture is worth a thousand words is an adage that holds true, especially when it comes to photos of The Boy.

If you didn't know anything about The Boy you would think I coached him to pose for this shot and asked him to pretend he is running from the Evil Emperor Zorg while dodging his ping pong ball gun.  When I look at this picture, I like to pretend this is the case.  And that we are enjoying a fun family moment.  The reality is that The Boy is stimming (hand flapping) because he's overstimulated and is in fact at a loss for control.  This is one of my sons.  This is the son that brings on the stares.  The kind that say, "what is wrong with that kid?"  The only thing wrong is a lack of understanding of his condition.

I have many shots of The Boy stimming.  They used to sadden me but no longer. They remind me of that famous Neil Leifer photo of Ali standing over Liston seemingly beating his chest.  The fact is that he just tapped his chest for a split second and that moment was frozen in time.  That is how I learned to deal with these photos.  As just moments in time that do not tell the entire story. 

Below, we see The Boy in another solitary moment. Looking off, contemplating, his little mind processing all to see in Downtown Disney.  Accompanied by Pooh, Piglet and Tigger, he seems disengaged and detached.  This is probably the biggest stereotype regarding children on the spectrum.  That they live their everyday in some type of inner solitary confinement.  There was an instance when a childcare provider told The Old Lady that she thought The Boy would just sit in a corner while at her center.  Now this was a woman who has run an after school/day care program for over thirty years.  So if she can be ill informed, imagine people who have little interaction with children.  There are times when The Boy becomes detached and super focused but it's really when he is reading or trying to figure out some  game.  This is the son that can't be bothered.  

I don't see his detachment as something negative.  I see it as The Boy's problem solving and introspection time.  We all become detached at times, and with children on the spectrum it seems to me an area that gets a great deal of attention.   Maybe because it's common character trait that everyone shares, and the condition exacerbates this.  Sometimes I can be a little overbearing in my attempts to "snap him out of it."  And more often than not, The Boy will push me away or respond almost like he is telling me "I got this" or "You sir, are annoying me."  And it's still okay because we all need our time.      

The Boy now on the Speeder bike looks like he is racing through the forests of Endor.  Looking like he is engaged in the shot, participating in make believe.  Just having fun the way any other 5 year old should.  This is the son like any other.  The interests he finds to be fun and entertaining make him smile.  He generally cracks up at any kind of slapstick mayhem.  He cracks up when contestants try to cross the big balls on Wipe Out. Sometimes he pretends to surf space when watching the Silver Surfer cartoon. He takes on the role of Little Critter and recites line from one his favorite book "Just me and my Dad"  
"There comes a time when the jewels cease to sparkle.  When the gold loses its luster.  When the throne room becomes a prison.  And all that is left is a father's love for his child." Conan the Barbarian
All three of my sons have traits that appear from time to time.  I embrace every solitary moment captured.  I know the story behind every photograph.  And I am happy and proud to share them. I love my three sons equally.  They all need different attention at different times.  But I make equal time for each of them because my three sons make up My Boy. 


Saturday, June 18, 2011

And The Dept of Ed Does It Again...

2,500 kindergarten students have no appropriate school placement  for the fall.
The DOE missed the June 15th deadline. 

Earlier this year (April) the DOE rolled out a new program called SESIS - a Web-based system for tracking students with disabilities, called the Special Education Student Information System (SESIS).
The program is supposed to ease the schools' delivery of services for disabled students by providing a system for tracking students' needs, but some teachers say it's riddled with problems.
They say they never received proper training, schools don't have enough bandwidth to run it properly, and they wait up to two hours when they call the program help line.
"It's impossible to know how many kids throughout the city aren't getting services because of problems with SESIS," said Julie Cavanaugh, a special education teacher at Public School 15 in Red Hook, Brooklyn.
 "It's not functioning properly - there's a serious flaw in the design," said Cavanaugh, adding that it's taking her twice as long to create records for students with disabilities using the new system.
And basically what it comes down to is: poor planning and lack of basic training. While the DOE and New York State cry broke, slashing budgets and cutting funds, implementing SESIS mid-year was reckless, completely inefficient and an extreme waste of money.  

Luckily The Boy has a place for kindergarten.  But my Turning 5 meeting was kind of a nightmare.  And it was confusing.  Not for me, but for the educators, psychologists and social workers running the meeting.  I mean, no one really seemed to have a clue.  There was a lot of questions and "I'm not sure" and running out of the room to ask someone else.

But let's get back to the 2,500 kids who have no place to go in September. If the the DOE fails to provide appropriate placement, the kids may be provided with a Nickerson Letter.*  Getting the Nickerson Letter is like hitting the lotto; it allows kids to a private school education for one year.  Sound great?  No - it's really not.  Because we're in June, almost July.  And most likely, many of the schools that accept the Nickerson Letter will be full.  

And then what?  Crossing my fingers and hoping the DOE has a Plan B.

*Nickerson letter (only in New York City): If the CSE fails to offer your child an appropriate placement within 75 days from the date of request for evaluation, within 65 days from the date of consent to evaluation, or within 30 days from the day of the CSE review that made the program recommendation, the Board of Education should automatically give you a Nickerson letter. In this letter, the Board offers to pay your child's tuition at any state approved non-public school that accepts your child for the remainder of the school year, or, if you enroll after April 1, until the end of the next school year. With the Nickerson letter, you will receive a list of the schools in which you may enroll your child. You should be aware that this list of schools is limited, and a Nickerson letter does not guarantee that you will be able to find a place in one of these private schools for your child. If the CSE offered you a site or sites, but you feel their recommendation was inappropriate, you may also request a Nickerson letter from the CSE, but it will be more difficult to obtain one.  

Friday, June 17, 2011

"You don't raise heroes, you raise sons."

You don't raise heroes, you raise sons.  And if you treat them like sons, they'll turn out to be heroes, even if it's just in your own eyes.  ~ Walter M. Schirra, Sr.

To My Papa

In all the things I try to do
I want to do them just like you
I'm watching every move you make
And trying to take each step you take
Although right now I'm sort of small
When I'm with you I feel ten feet tall
Like you, I want to be cool and smart
Cause I love you Papa with all my heart

Father's Day, 2006

I gave this picture to The Husband the Father's Day after we received The Boy's diagnosis.  The words "Your son has autism" had been difficult for The Husband to hear.     

An autism diagnosis is usually harder for fathers.  Just as mothers have expectations of their children, fathers have expectations of their sons.  Especially if that father is into sports.  They imagine their time will be spent out in the parks tossing a ball around or going to sporting events.  Dreams of their son being drafted by their favorite team.  Fathers want to live vicariously through their sons.  And when a father hears autism, these dreams and expectations are taken away.  And I imagine they wonder where they will fit in their son's life.    

I often think about how my father or my father-in-law would have handled an autism diagnosis.  I doubt either would have left (as so many men often do).  But I doubt either of them would be as hands on as The Husband.  It's not to say that they were bad fathers, it was just a different generation.  The expectations of being a father was simply having a job and being a good provider.  No one expected fathers to show up to schools, to talk to teachers, to go to appointments, to spend quality time with their children.    

For me, this gift represented the importance of The Husband's role in our lives.  I wanted him to know that The Boy's diagnosis didn't change the way they felt about each other.  The way that The Boy smiles when he sees his father walk into a room.  I wanted The Husband to know: Autism doesn't mean a son needs his father less.  It means a son needs his father even more.

I am always amazed by The Husband's patience when dealing with The Boy.  I watch as The Husband tries to show The Boy how to toss a football, ride a big wheel or balance on his scooter.  And I fall in love every evening, when I watch The Husband climb into The Boy's bed to read a story or sing a song. 

But I think my favorite moments are when The Boy jumps up on the sofa while The Husband is watching baseball or football.  For a few minutes, The Boy will watch and The Husband will put his arm around his son and try to explain the game.  Until of course The Boy gets bored and moves on to something else.  But I know to The Husband, those few minutes are all he needs. 

He is raising a son and his parenting style isn't atypical or otherwise.  Because I know that the diagnosis, hasn't changed the kind of father The Husband would have been, but it's made him a better man than I could have ever hoped for.

Thursday, June 16, 2011

Questions are Welcome, Staring is Not

With The Boy's kindergarten placement in a "typical" public school this September - I am nervous about how the other kids will treat The Boy and his classmates.

Will they make fun of him?
Will they isolate him?
Will they ignore him altogether as if he does not exist?

These are concerns every parent of a special needs child has.

A few weeks ago, I attended a BBQ with The Boy and The Husband.  There were "typical" kids at this BBQ, kids around The Boy's age. They were playing at the sand/water table near their parents when The Boy ran over.  Excited by the sand and water, he started hand flapping and making his bird like sounds ("EEEEEEEEEEEEEE").  The parents looked at The Boy and when I smiled at them, they smiled back and looked away.  I tried to introduce The Boy to the other kids.  I made him say hello.  They politely said hello back.  And that was it.

From time to time they stared at The Boy.  I could tell they were curious, trying to figure out his behavior in their young minds.  One boy even asked, "What's 'EEEEEEEEEE'?" And I clumsily tried to explain to this 6 year old about autism and sensory processing disorder.

But still, The Boy was ignored.  Not that it mattered to him, he didn't notice.  It mattered to me.  I can preach about autism awareness and acceptance all I want.  But when I step off my soap blogging box, it still hurts when your kid is the one that's left out and looked passed.  Because it's easier to ignore him, than to stop and ask questions to try and understand.  And how much can I really expect from 6 year olds?

The Boy is at the age where autism is becoming more and more obvious.  It's not like when he was 2 or 3 or even 4 when it was easily disguised.  He's 5 1/2 and he's different and there's no calling it anything else.  He is my son and he goes where we go.  We shouldn't have to hide him from society, because his behaviors make others uncomfortable. 

And then, just this past weekend we were in Best Buy.  And The Boy was being The Boy.  This woman smiled at us and said, "He's just beautiful."  And I thanked her.  Then she asked, "What school does he go to?"

I was taken aback by her question.  It seemed intrusive. But I told her the school and explained that it was a special school because he has autism.  It turns out the woman - Regina - was a speech pathologist.  We talked for a few minutes - about schools, related services. Regina wasn't being intrusive, she was being respectful, she was treating us with dignity and delicacy.  I'm sure she realized The Boy was on the Spectrum, but she didn't say anything until I did.  Asking what school The Boy went to was a safe, unassuming question.  (I've had people stop me in the street and say "Does he talk?" - which is sort of rude.)     

I want people to come up and ask questions; I welcome them. But to stare and look away ashamed when I meet their eye? I don't want that.  Who would? 

I love when people ask me about autism; when people ask about The Boy.  It shows me that people want to learn, understand and accept autism as a different way of being.  Different doesn't mean bad, it just means different.  And I want parents and children to get to know The Boy that I love.  That's all any parent wants: acceptance and understanding.  

But you can't accept and understand autism if you don't know anything about it.   

So if you're unsure on how to approach the parent of the "weird" kid. All you have to do is ask: 

What school does your child go to?   

That's the right question to ask and the best way to start a dialogue.    

Wednesday, June 15, 2011

Wordless Wednesdays: A Loser Like Me (Performed by Glee Cast - video/lyrics)

Yeah, you may think that I'm a zero
But hey, everyone you wanna be probably started off like me
You may say that I'm a freak show (I don't care)
But hey, give it just a little time, I betcha gonna change your mind

All of the dirt you've been throwin' my way
It ain't so hard to take (That's right)
'Cause I know one day you'll be screamin' my name
And I'll just look away (That's right)

Just go ahead and hate on me and run your mouth (So everyone can hear)
Hit me with the worst you got and knock me down (Baby, I don't care)
Keep it up and soon enough you'll figure out
You wanna be, you wanna be
A loser like me! A loser like me!

Push me up against the locker
And hey, all I'll do is shake it off, and getcha back when I'm your boss
I'm not thinkin' 'bout you haters
'Cause hey, I could be a superstar, I'll see you when you wash my car

All of the dirt you've been throwin' my way
It ain't so hard to take (That's right)
'Cause I know one day you'll be screamin' my name
And I'll just look away (That's right)

Just go ahead and hate on me and run your mouth (So everyone can hear)
Hit me with the worst you got and knock me down (Baby i don't care)

Keep it up and soon enough you'll figure out
You wanna be, you wanna be
A loser like me!
A loser like me!
A loser like me!

Hey you over there, keep that 'L' up, up in the air
Hey you over there, keep that 'L' up, 'cause I don't care
You can throw your sticks, and you can throw your stones
Like a rocket, just watch me go yeah
L-O-S-E-R, I can only be who I are!

Just go ahead and hate on me and run your mouth (So everyone can hear)
Hit me with the worst you got and knock me down (Baby, I don't care)
Keep it up and soon enough you'll figure out
You wanna be, you wanna be
A loser like me!

Just go ahead and hate on me and run your mouth (So everyone can hear)
Hit me with the worst you got and knock me down (Baby, I don't care)
Keep it up and soon enough you'll figure out
You wanna be, you wanna be
A loser like me! (A loser like me!)
A loser like me! (A loser like me!)
A loser like me!

Tuesday, June 14, 2011

Letting Go

The other day I discovered a new blog: The A-Word.  (Good stuff!  Heather St. Clair is one to follow.)  Anyway...the first post I read was "A Common Theme".  It was basically a post of pictures of Heather, her husband and two sons.  In every picture Heather has one arm wrapped around her son, Brian.  She writes:
I'm afraid Brian will see something he likes and bolt for it.

I'm afraid I won't see him leave and then when I do and start to yell his name I'll be overwhelmed realizing Brian doesn't respond to his name.

I'm afraid he'll realize he's lost but not be able to tell anyone his name, age, or where he lives.

I'm afraid he'll go to any adult that offers him a smile and a hand to hold on to.
Sound familiar?  I have these same fears.  I'm sure many of us do.

Holding on for dear life at The Magic Kingdom
Her post really struck me because we have so many pictures where I'm holding on to (more like clutching) The Boy for dear life.  Pictures where my hand is clamped tightly around his wrist, as his hand can so easily slip out of mine.  I hardly ever let go of The Boy when out in public.  When we take the busy NYC subways, I hold on to him with both hands while walking on the platform.  I often wonder: When is it safe to let go? Will I always have to hold his hand? 

Last week while we were walking into The Magic Kingdom, I saw a grandmother walking with her grandson.  The grandmother was small, frail, her back slightly bent from age.  She moved slowly, taking small cautious steps.  Her grandson was taller than her, probably about fifteen.  His steps were just as cautious and slow, he wore a silver medical bracelet around his wrist, he looked all around, but focused on nothing in particular - he was clearly special needs.  And the grandmother was holding her grandson's hand.  I don't think there was any chance he would run away, and if he did - the grandmother certainly wasn't chasing after him.  She wasn't squeezing his hand in fear, but holding it loosely, loving, the way I hold The Boy's hand when we're walking in the neighborhood.  As if it were the most natural thing in the world for this young man to be holding his grandmother's hand for support, without any shame or teenage embarrassment.  The sight of them - the sweet gentility of such a gesture between grandmother and grandson, was so poignant, so tender that I felt invasive and forced myself to look away.      

Had this been a "typical" teenage boy, there is no way he would be holding his grandmother's hand.  Especially in a place like Walt Disney World.  I remember my brother as a teenager, he wouldn't even kiss my mother hello in public, let alone hold her hand.

And I realized in a strange way, we are lucky.  Yes, we fear the possibility of letting go.  But there is something beautiful and almost reassuring in knowing, that we get to hold on for a little bit longer.