This Month on Babble

September was a busy month. There was back-to-school and well, back-to-school - because that's enough to keep any parent busy. So busy that maybe you haven't had a chance to read  what's been going on at Babble. 

Catch up with September's Babble posts:

• The Pros and Cons of Being Working Parents
• 7 Tips to Ease Transitions for Kids with Autism
• A Summer of Firsts Captured on Instagram
• Oh! The Things I Would Do If I Had My Kid’s Energy
• 6 Video Games My Son with Autism Loves To Play
• The Only That Matters When Your Kid Has Autism
• Play-Doh: Fun and Therapeutic for Kids with Autism

Through the Looking Glass: Rick Schostek - What Happens Next?

Our son Greg loves Sesame Street.  The show’s characters are practically a part of our family.  Greg has memorized countless skits and songs.  He knows more Spanish words than his parents do, thanks to Luis, Maria, Rosita and the other characters on the show.

Sesame Street’s lessons and lyrics are quite helpful for us.  A couple of times a month, in response to a spilled drink or wrong turn, Greg or I will cite Big Bird’s tuneful advice: “Everyone Makes Mistakes.”  Greg sometimes counts in the manner of Count von Count, adding “ah ah ah” when he’s finished. 

I’m sure there are many families who benefit from the teachings of the Children’s Television Workshop.  I’m equally sure that our family is somewhat unique in our connection to Sesame Street.

Greg is 23 years old.  He has autism.  In today’s terms, he’s “on the spectrum.”  He’s one of millions of people who live with ASD, the incidence rate of which has increased dramatically throughout Greg’s lifetime.  No one knows why.  Better awareness and diagnostic tools account for some of the increase.  That doesn’t explain everything though.  Something else is going on. 

Recently ASD has received a lot of media attention, attributed to the increased incidence rate and the mysteries of the disorder.  That’s all good.  It’s meant more awareness, earlier diagnoses and increased research funding.  The media attention is, however, 99 percent focused on children with autism.

Greg isn’t the first young man or woman with ASD to transition into adulthood.  With the increased incidence rate, he and others are at the leading edge of a wave of adults with ASD.  In the last decade, our school systems faced a huge challenge with this growing population. 

The years have gone by and Greg has progressed, often with 2 steps forward and one back.  Now he’s 24, holds a part time job, attends an adult day services program and is doing just fine.  His transition to adulthood and the working world was the motivation for me to write the book What Happens Next? Raising a Son with Autism: A Father’s Story.

As this wave of kids become adults, they’ll need a lot of attention from residential, vocational and other services.  Is our adult services infrastructure ready for this wave?  What happens next for Greg and these thousands of others?  People with ASD have a lot to offer.  They are some of the most interesting people walking this earth.  They have many talents that can be put to good use in our society.  Let’s get a realistic estimate of the resources required to support all children and adults with ASD.  We need a comprehensive approach to support people with ASD. 

What happens next?  I don’t know yet.  But I know that those of us without autism must open our minds to a whole different world to help make this transition possible.  I’ve always been uncomfortable with the notion that we’re fighting autism.  We may be fighting to find the cause and cure, but not the condition itself.  Autism isn’t a disease.  It’s organic.  It’s part of who Greg is.  We haven’t fought autism all these years.  We’ve adapted to it.  In turn, we’ve helped Greg adapt to the confusing world he lives in.  Now, maybe the world will also begin to adapt as our children grow up and transition into adulthood.

~~~~~~~

You can learn more about Greg and our family’s journey through stories and experiences like these in the book What Happens Next?  Raising a Son with Autism: A Father’s Story and on www.whathappensnextbook.com

The Pros/Cons of School Breaks

YAY! The Boy is off from school this week.

BOO! The Boy is off from school this week. 

I know The Boy needs the time away - school is extremely stressful for him.  Not that he's told me.  I just know by the things he says the mornings he has to get ready for school.

But school breaks are also stressful for me too.  I have to arrange for child care because I can't take time off work.  And while I'm extremely lucky to have a great babysitter who adores The Boy.  I still worry.  Because lately The Boy has been really getting into EVERYTHING!  I mean stuff like knives and opening windows...but that's for another blog post.

Anyway this is my pros/cons (short) list of school breaks:       

What's on YOUR list? 

This Too Shall Pass

There are days when I just try to keep my head above water.



And days when I feel like I am drowning. 



But I know that I will emerge, stronger than before.




*photos from Flickr: Creative Commons

Tips for Turning 5: Where to Begin

School may have just started but if your child has an IEP, Turning 5 and entering kindergarten next Fall - you may want need to start doing your homework now.

No.  It's not too soon to start touring schools and applying.  Trust me.  Anyway, last year was pretty tough for me and I thought I'd share some of the things that were helpful to me.
  
1.  Give yourself plenty of time. The transition from CPSE to CSE is truly a year long process.  One with many deadlines - know them all - and appointments.  You will need to tour schools, fill out applications, have your child interviewed at schools, possibly make an appointment(s) for a private evaluation, meet with the CPSE and the list goes on and on.     

2.  Schedule enough time to get a private evaluation. By the time you go into your Turning 5 meeting, you'll want to be armed with a private evaluation with recommendations.  Start calling around in September - as there may be wait lists.    

3.  Attend the JCC Special Needs school fair on Tuesday, October 25th.  "The JCC in Manhattan and YAI/NYL/LIFESTART partner to present the annual Special Needs School Fair. Representatives from preschools, elementary, middle, and high schools serving the New York City special needs community will be onsite to provide information and answers to your questions. School materials will be available."  For registration information click here and go the the JCC Manhattan website.

I attended this last year.  Get there early.  Go with a pen, notepad, a bottle of water and some Advil.  It's overwhelming. But almost every single school within the 5 boroughs, Westerchester and Long Island are there.  If you're a working mom or just limited with time to schedule appointments, the school fair is a great way meet representatives, pick up applications and set up appointments to tour. 

4. Make a list/spreadsheet of all the schools you want to tour and/or apply to.  But tour a school before you apply.  Sometimes you'll know just by walking into a building whether or not it's the proper placement for your child.  Many schools will tell you - the earlier (by December is ideal) they recieve the applications the better.  Many schools have application fees, which can become a financial hardship when applying to several schools.  Ask if the fee can be waived or reduced.      

5.  Be honest with yourself.  I cannot stress this enough.  As parents, it's natural to want to believe your child is the rock star of the class.  However, when touring schools - look at the children, listen to the them, watch with a keen eye.  Then ask yourself the tough questions.  Does my child fit in here?  Would my child have a hard time?  Can my child do the work? Will my child need a para to get through the day?


Your feelings will be hurt.  You will feel frustrated.  You will be disappointed.  Your child will be rejected.  You will wonder - why wasn't my child good enough for the _______ School?  Your child will be accepted.  


In the end - it really will work out.  And if it doesn't, that's okay too.  Don't be too hard on yourself.  It just means, you'll have a second chance to get it right. 

Keeping an Open Mind

Last week I wrote a post about Assumptions - well, today was the first Parents Association meeting at The Boy's school.  I was pleasantly surprised.  I met two AWESOME moms whose kids are in the ASD Horizon program with The Boy.  And I was reminded of all the reasons why I was so impressed with the school.

Last week I made assumptions of my own.  And I should know better.  But I think as a Special Needs parent, I have become jaded against the Board of Education.  I think at times, it's easier to believe that they will fail before given the opportunity to succeed.  I think that I have built a wall of protection, with a guard and a wrought iron fence around me.  Today I was reminded - I need to work at tearing down that wall.  Or at the very least, giving the guard a break.      

It's been a rocky beginning for all of us.  Just as The Boy is having difficulty with the transition.  So am I.

All this week, I've been in communication with the teacher and more importantly the Principal.  She truly is a dedicated professional.  And I feel reassured that they will do their best to help The Boy. 

I remembered what both the Teacher and the Principal said last May when we met.  They were clear to tell me they weren't promising miracles.  And I remember saying, I didn't expect any.  All I wanted was for The Boy to be given a chance.

And that's exactly what they're doing.

So for now, I'm keeping an open mind.  In the end, it really may not be the most appropriate placement for The Boy.  But I will know that they tried.  And that's all I ever wanted them to do.            

Keep Calm & Carry On (I needed a reminder)

Whenever The Boy starts running back and forth, flapping his hands, flailing his arms and mumbling in his high pitched voice - I know he's nervous, stressed, excited, flustered.  I take him by the arms, bend down so we're at eye level and say:  "What do you need to do?"

The Boy will look me in the eye for a quick moment.  "Calm down."

And then I give him a piece of gum and/or an activity (play dough or let him jump on the bosu) I know will get him refocused.  

Well this week, I'm stressed out over kindergarten (surprise, surprise). With every day that passes, it just gets worse.  More than once this week, I've had to stop and count to ten backwards.  I've had to press my hand against my chest and remind myself to breathe in our breathe out.  I've had to close my eyes and remind myself to take these next few weeks, 10 minutes at a time - because 1 day at a time is just too much right now.  Even still, I've stressed myself into 2 big puss pimples.  (Sorry if this creates a gross visual.)  And then last night I stressed out about it in a FB status update:  

With only 13 days left until this kid starts kindergarten, I'm starting to panic. Stressing myself into a pimple (2 big ones actually). And then watching some of the neighborhood kids go off to college. I couldn't help but wonder, if we'll see that day. Then I smacked myself silly - let's just get through kindergarten.

I didn't really smack myself silly.  Though I'm sure I needed it.  Instead, some wonderful women helped me calm down:

~ K will bring good changes to your world, we lived through that stress and came out the other side smiling, stay involved and true to yourself, your voice will be the most important tool, listen to your gut, you will find you are advocating for those whose (parents included) who mightn't be strong enough to be heard on their own.

~ Stop future trippin'

~ Whatcha panicking about? He can "read" your feelings. So chill. If you stay cool, he'll get that vibe. Nothing to panic about...he's going to be fine. There WILL be bad days, REALLY bad days, and you know this...but there's gonna be good ones, GREAT ones too. Has he visited the school? Met his teacher? Did you write a note about what to expect of him? You're happy with your choice right? Now go with it.

~ We were lucky...our journey to Kindergarten happened so quickly (we put our oldest into a year round program, that had already started) so our plan to have 1 more month last year ended abruptly. This turned out to be good for both the kid and me. Enjoy this. Don't fret it.

   

Next week will be dedicated to 

Prepping for Kindergarten 

(my activity to keep me refocused) 

The People We've Met Along The Way

This last week, I've been reminded of how much progress The Boy's made.  Like the other night when he sang "If You're Happy and You Know It" at 4 in the morning.  How amazed I was that he was able to sing the whole song and do all the steps simultaneously - effortlessly.  

I think about how when The Boy started  Early Intervention he had no words or way of communicating.  How he gradually acquired five words, then ten and now - three years later - he has enough words to carry on an argument. 

Me: How about Pizza for dinner?

The Boy: No.  How about another dinner?  I want Chinese rice.

And I think about all the hours of therapy it has taken him to get to this point.

  

All the people at school.  All the teachers, therapists and aides that have held his hand.  The revolving door of therapists coming in and out our home.  All the extra related services.  All the Board of Ed officials that I spoke to, faxed, emailed or argued  disagreed with.

All the people we've met along the way to help The Boy.  And us.  

All the people that provided advice.  Offered suggestions.  Gave us support.  All the people who listened.  Who let me cry in their offices.  Who willingly gave their time and energy to talk to me, answer my questions and address my concerns. 


All the people who were so patient in teaching The Boy, the most basic of tasks.  


All the people who rejoiced in The Boy's achievements as much as we did.  All the people who advocated for us.  All the people who assured me that there was hope, that The Boy had potential.  All the people who told me, everything will be okay. 


It wasn't one person, one program or one therapy.  It was a collective effort to get us to this point.  We could not have done this alone.  And I can't think of all the progress The Boy has made without thinking about the people we've met along the way.


How can I possibly thank them?  How can I possibly repay them?  There is no monetary value that I can place on that kind of assistance.  Or on the amount of gratitude I have.  And how can they possibly know the difference they've made in our lives? 

Yesterday was The Boy's final day of school. (read post here)  And after I put him on the school bus and walked away, I couldn't help but feel sad.  As if we were losing something special.  We've said goodbye to so many therapists over the last three years.   It still doesn't get  any easier.  The Boy doesn't really know the difference.  He's too young to value their importance as much as I do.  

I'm sure as the years pass, he may forget their names, their faces.  But I will remember.  And I will remind him.  The people that have walked into our lives, the ones I never expected to meet, the ones that changed our lives and the way we live - will never be forgotten.     

 

This post is included in S-O-S Best of the Best Edition 9: Therapy and Special Needs Kids. Best of the Best Editions are published on the 15th of every month.

The Final Day

Today is the last day of school.  And unlike the other last days at the end of the year – this is his final day of being a preschooler.  He will be moving to kindergarten, to a new school, where he will no longer have the “Preschooler with a disability” classification.  He’ll be classified with “Autism.”

I look at The Boy’s book-bag, worn from wear and I remember the first time I put it on him three years ago.  It was too big and wouldn’t stay on his shoulders, but I put it on because I wanted to take a picture.   And now today – three years later, it still falls slightly off his shoulders except now he knows to adjust the straps with his hands.  It makes him look like one of the big kids.  And I so desperately want to keep him a baby.

Earlier this week I picked The Boy up from school.  And as I walked up the steps I realized it would be last time I’d pick him up from this school.  The school he’s been in since his diagnosis.  It was hard not to feel emotional, hard not to cry as I hugged the Early Intervention Director goodbye.

This transition won't be like transitioning from EI to CPSE.  The Boy won’t be moving up to a different floor; he’ll be moving to a new school where his name and face are not yet known.

First Day Sept 2008

I thought about the first time I put him on the bus.  How nervous I was.  He was barely 3 years old, still in diapers.  Putting him on a moving vehicle, with a driver I didn't know.  Handing him over to strangers when he had no words or way of communicating.  And all I could do was watch and wave from the sidewalk, hoping everything would be okay.

Last Day Aug 2011

And when I put The Boy on the bus this morning, I hugged and thanked the bus driver and matron.  Because they were really great with The Boy, saying good morning with a smile.  Waiting for me on mornings when I was late.

I walked to the corner, bought myself a cup of coffee, waited for The Husband to pick me up.  And as soon as I stepped in the car, I buried my head in my hands and cried.  It is really over, I thought.

I knew this day would come.  I’ve been dreading it since last September.  And I feel like I’ve been pushed backwards, further down the rabbit hole.  And I have no idea what to expect.  

"End? No, the journey doesn't end here. [Kindergarten]* is just another path, one that we all must take." Gandalf, Lord of the Rings

*obviously this quote has been modified.

I'm Not Ready

It's no secret that our kids have trouble transitioning.  And with 23 days left (but who's keeping track?) until the end of The Boy's final school year at his current placement, I'm trying to prepare him.  

When I know there will be a change in our routine, I explain it to him using the words "first"  and "then."  First we'll go to the supermarket and then the park. Or, First school, then Sensory and then Home. I do this because he always needs to know what's coming next.

For the last few weeks, I've been telling The Boy, that soon he'll go to "a different school."  

The times that I've said this to him, he's replied, "We're going to take the train to the school?"  Sometimes it comes out as a statement, other times like a question.  And I wonder what school he's thinking of, since he's taken the train with me to interview at four schools.  But I know it's too complicated a question to ask.  And I don't want to him to say "the school with the tree" because that was my absolute dream school and we were rejected.

This week, I've gotten two calls from The Horizon Program and while I'm looking forward to The Boy starting there.  I still have my doubts.  As I'm typing this, I feel my heart beating faster and I'm trying to breathe in and out slowly to calm my anxiety.  Still, my hands are shaking and my fingers tapping nervously on the keyboard. 

Am I making the right decision?  I can't tell you how often I've asked myself this question.  How often I've been unable to sleep over it?  It's a foolish question, really.  Because I know I would question any new school - even the dream school.

Because I'm not ready for him to go to kindergarten.  I'm not ready for him to grow up.  I'm not ready to let him go.  He's already lost his first tooth.  And has a second one ready to come out.  He's starting to push my hands away when I try to help him with things.  His favorite phrase of the moment is "all by myself."  He wants to brush his teeth all by himself (even though he can't).  He says he wants to take the bus to grandma's house all by himself (even though he won't).  And says he wants to pour his juice all by himself - this he can do. Well, almost.

The Boy is starting to show independence in self-help skills.  I know, that's great!  Especially since some are part of his IEP goals.  And it makes me so proud to see how far he's come and every inch of progress makes me more hopeful for the future.  But can't he need me just a little bit longer? 

Come September, The Boy may not have any trouble transitioning.  The Boy may get on that school bus on the first day of kindergarten without looking back.  Maybe all this anxiety is for nothing.  But if he does have difficulty transition, he'll have the proper support, and he'll adjust quickly.    

But in the meantime, who is going to help me with these transitions?  Because I really wish there was someone to tell me what's coming next.