Tuesday, May 31, 2011

TTLG: Holding Hands Through Change by Chynna Laird

Here we are at the end of May already and I can honestly say, I have never been more ready for summer to come. Like a lot of other families out there, this winter and spring seemed endless--so much more difficult than ones in the recent past. My four children passed each other one virus after another, Jaimie’s anxiety and sensory sensitivities skyrocketed and the icy, cold hand of winter just didn’t seem to want to let go. The combination of those things added to having been stuck indoors most days made the little changes that popped up a bit more difficult to endure, especially for Jaimie.

One of the most difficult things in living with Jaimie’s exceptionalities is how desperately she clings to the familiar. The familiar is less scary to her—she knows what to expect from the people and things she’s accepted into her rigid routine and need for sameness. In all fairness, she isn’t quite as rigid as she was when she was very tiny. I mean, there were times back then when she made me re-do a task or activity from the beginning if I’d missed one tiny step and I had to keep re-doing it until she felt better. Now, however, she’s come to understand that she can’t control everything in the outside world or how it may make her feel. She still struggles though. And admittedly, I may have been part of the problem.

Six years ago, before her SPD, OCD and anxiety diagnoses, it was easier allowing Jaimie to avoid anything that made her uncomfortable, or may have made her uncomfortable, than dealing with her meltdowns. It hurt me physically watching her struggle through anything new or during a transitional phase like a holiday. So, most of the time, her dad, Steve, and I let her stay inside avoiding people or places that frightened her or fun activities that might have been too stimulating for her. We’d even given up things we wanted to do to avoid upsetting her. And now I’m asking myself, “How did that help her?” Simply put? It didn’t. And I couldn’t keep on doing that to my Jaimie.

As parents of exceptional children, we’re used to changes—in medication doses or types; in diagnosis or prognosis; in the types, intensity or amounts of therapies or treatments—and we do our best to cope with them. But it hurts watching our children struggling with those changes or even coming to fear them. Here are some things Jaimie made me realize about delving into and embracing the new:

You don’t know until you try. If they want to try something, even if the activity or task needs to be tweaked a bit in order to make it possible we need to allow them to try. By helping our children avoid things we’re basically saying, “No, you can’t.” They already believe that or feel that from others. If Jaimie gets some prep time before something new, support during the activities and a bit of time to come down from the new sensations, she does fairly well. I use the words of a very wise Jedi-Master to make Jaimie giggle away her fears of trying something new: “Try not; do!”

We’re increasing his quality of life. There’s nothing wrong with avoiding something or someone one day because we just aren’t in the mood to deal with it—we’re all guilty of that. But avoiding things all the time won’t teach us how to cope with situations properly. And if a child doesn’t experience different activities or people, even if it’s in his own way, he’ll never discover all the wonderful and beautiful things life has to offer. Plus, as we all know, new experiences helps to increase brain power!

We’re giving her strength and courage. One of the most valuable but breakable things a child has is her self-esteem, especially when she already struggles with things she sees other children doing with ease. A great way to help keep her self-esteem strong is by reminding her of what she can do. And be sure to use those “can do” activities to turn to when they’re struggling through newer activities that aren’t coming as easily. That will give them the courage and strength to keep trying.

We’re teaching them acceptance. There’s a very old expression that goes, “God grant me the strength to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.” By exposing your child to new things, and helping him work through life’s transitions, you’re teaching him the very heart of this expression: Acceptance of change, acceptance of what they can or can’t control when change occurs and what they can do to work through it. I think every child should have this expression posted up somewhere where they’ll always see it. I’ve been saying these words to Jaimie since she was very small and she now knows the words by heart and repeats them to herself whenever she feels down.

It’s all worth it…in the end. Believe me, I understand how hard it is to step back, let go and allow your child to experience things on her own—it’s a scary thing. For those of us who have a child with severe needs, it can be even scarier. But we have to remember that by letting her go and delve in the unknown…what’s new and exciting…we’re giving her a true gift, even if she only gets to enjoy it for a short time: the joy of being a child.

Even though we may not always see it, we are making a difference and they know we’re there for them—holding their hands through change.

CHYNNA LAIRD – is a psychology student, freelance writer and multi award-winning author living in Edmonton, Alberta with her partner, Steve, and their three daughters [Jaimie (eight), Jordhan (six), and baby Sophie (almost three!)] and baby boy, Xander (four). Her passion is helping children and families living with Sensory Processing Disorder and other special needs.

You’ll find her work in many online and in-print parenting, inspirational, Christian and writing publications in Canada, United States, Australia, and Britain. In addition, she’s authored an award-winning children’s book (I’m Not Weird, I Have SPD), two memoirs (the multi award-winning, Not Just Spirited: A Mom’s Sensational Journey With SPD and White Elephants), a Young Adult novel (Blackbird Flies) and an adult Suspense/Thriller (The Gift to be released late 2011).

Please visit Chynna’s website at www.lilywolfwords.ca, as well as her blogs at www.the-gift-blog.com and www.seethewhiteelephants.com, to get a feel for her work and what inspires her.

Saturday, May 28, 2011

TTLG: An Artificial Divide? A Look Back by Kim Wombles

I wrote the following post 03/30/2009 over at Detritus, as I was first getting involved in the online autism community. Hmmm. It's easy to see, looking back at this post, how Kathleen and I began to work together to try to build places where community could happen. 
My son's diagnosis of autism was made before was autism was the in-diagnosis. It was 1994, and he was 4 years old, Back then, refrigerator mothers as a cause was still being bandied around. Bettleheim's book was the first thing I read about autism. It was a traumatic introduction to autism. Now, the first and most likely thing parents are going to hear in conjunction to autism is vaccinations being the cause. Refrigerator moms weren't the cause, and it isn't really likely that the MMR is to blame, either.

I think support groups, if you could find them then, were easier for parents of children with autism. It seemed a more cohesive whole, a solidarity. We had children with such tremendous difficulties and no real treatments. We didn't have a whole lot of information, and we were scared about the prognosis. We supported each other, commiserated, discussed what worked on good days, what seemed to go wrong on bad days. We didn't argue over vaccines (it would be another four years before Wakefield did his damage). We didn't argue over cause. We focused on how to help our children now.

I've been looking online at today's support groups and there is no solidarity, no sense of a cohesive community. That's probably okay. Autism doesn't render us identical. Our children have a wide range of issues with the same umbrella name. Many of us forget and assume our child is the prototypical autistic child. We assume that all the physical or mental symptoms represent autism. That's not the case, and hopefully we will get better at diagnosing co-morbid medical disorders and not lumping them in with autism. It is easy to assume a child's issues all have one cause, but not necessarily so (I think parents do that more than do physicians or psychologists).

There's plenty of hostility in many of the support groups and blogger's pages. Plenty of blame. Lots of conspiracy theories. In 1994, online support groups weren't in ready supply, so we got our support in small groups, meeting face-to-face. Now, we have anonymous screen names. We also have plenty of options for support groups.

We aren't welcome at all the options, though. If you are an anti-vaccination, Jenny McCarthy, Generation Rescue type, you don't have much room for someone who thinks differently. Especially if you think that the fact there are three children in the family with autism and plenty of family members with similar, though less severe, traits tends to point to genetic factors.

No, there doesn't seem to be open-armed support for all. Some folks see their child's autism as a scourge to be eradicated. They think that somewhere under all that autism is the child, if you can just get rid of the autism. Some parents would change nothing and have society adapt to the child as he or she is. Others see their child as neurologically different, with some challenges to be assisted in overcoming. I suppose it partly depends on the number of co-morbid disorders and the degree of impairment the child faces.

My reality is that my children's autism is an inseparable part of them. Their brains are wired differently from "neurotypical" individuals. This has created challenges for them to overcome so that they will "fit" in with society. My son has additional difficulties beyond autism which has made his journey more challenging. He's probably not going to live an independent life, but he has every ability to live a happy, helpful life that is of value. We should all be so lucky to be loved, valued, and supported as he is. I work every day at making his road easier, but I do that by giving him the tools he needs to cope, not by eradicating the autism and not by seeing his autism as a disease.

Kim Wombles is an Instructor of English (and psychology) at Cisco College. Mother to three awesome kids (who have some issues), wife, and all that jazz. Sometimes snarky. Obsessed with knowledge, books, cats, flowers.  For more on Kim, please visit:
Countering..., Respect for Infinite Diversity and Autism Blogs Directory.

Friday, May 27, 2011

Priority Seating: Not All Disabilities Are Visable

On June 15th, 2009 the MTA kicked off it's Priority Seating Campaign .  And since then, we've all seen the signs on the buses and trains.  It's been almost two years since the campaign.  How many times have you given up your seat?  How many times have you seen others offer their seat to someone?  

Taking the bus with The Boy is fine so long as we get a seat.  Last Wednesday while taking the bus to the sensory gym, it was especially crowded and we had no choice but to stand in the front.  I had my big bag, The Boy's book bag and I had to keep reminding The Boy to hold on.  There were three young girls sitting in the priority seating.  Oblivious.  I looked around - there were a few elderly people standing too. 

The bus route up to Riverdale takes a lot of twists and turns, up and down hills.  And losing my balance is easy.  So I need to hold on to the rail and keep one hand on The Boy who has difficulty balancing his body.  

Though I admit, I let him step on the young girls feet more than once without apologizing.  She should have offered her seat. Not for The Boy - I would have let the elderly woman take it before letting The Boy sit down. Because that's how I was raised.

When The Boy was finally able to sit. I made him get up again - 2 stops later - for an elderly woman carrying her groceries. There were still a few teenagers sitting in the priority seats.  I let The Boy step on their feet too.

It amazes me that men, women, teenagers ignore the elderly.  Pregnant women. The disabled.  Mothers struggling to balance babies and folded baby carriages.  How people lack common courtesy.

I should have said something.

Next time I will.  And if you see something - say something too.       


Wednesday, May 25, 2011

Wordless Wednesday: Progress!

Norrin writing his name (by himself!) and doing pre-k math :)  
Thank to his new amazing SEIT - Ms. N  

Monday, May 23, 2011

Guilt is Inevitable

I think while all mothers deal with feelings of guilt,
working mothers are plagued by guilt on steroids!
~ Arianna Huffington

Every Wednesday (since September) I leave work early (around 1 p.m.) to take the D train uptown to The Bronx.  Thirty to forty minutes later, I get off at Fordham Road station and I'm ready to RUN. My sprint begins on the Grand Concourse, all the way down Fordham Road and ends passed Fordham University. For those not familiar with The Bronx, Fordham Road, is a long downhill (or uphill) busy stretch of street with stores, street vendors, shoppers, baby strollers, shopping carts, school kids, solicitors and the occassional undesirable.

Fordham Road (Sabo/NY Daily News)

By 2 p.m., I pick up The Boy at school and then walk the three blocks to the bus stop.  Depending on the weather, my mood or amount of the time we're waiting - we can take the BX 9 or BX 22.  Either one we take, we'll still need to transfer to another bus - the BX 10. The buses at this time of day are packed with school kids, mothers, babies, elderly folks and other people going about their day. Sometimes we get a seat.  Sometimes we don't and I have to balance myself and The Boy on a crowded bus.  At some point during our trip, we'll get off somewhere, I'll grab a cup of coffee for myself and a snack for The Boy.  

Our occupational therapy at the sensory gym is at 4 p.m.  We usually arrive by 3:30 and we sit in the waiting room and wait.  The Boy's session is 2 hours so I make myself comfortable until The Husband picks me up at 6.  We're home by 7 and then I need to cook something quick, eat and get The Boy ready for bed. 

Last Wednesday I did something I have never done. I cancelled our session. No, he wasn't sick.  No, neither was I - not really.
It was raining and cold and I was simply exhausted.  During the train ride up to The Boy's school, I couldn't keep my eyes open.  Everything hurt.  And my body kept jerking itself awake.  All I wanted to do was go home, flop on my sofa and sleep. The thought of standing in the cold rain, waiting for two buses made my head ache.  So I cancelled.

I'm not the parent that casually cancels sessions.  I don't do it unless The Boy is sick.  I've traveled to sensory gym during snow storms and heavy rains and on much colder days.  So I hated myself for doing it last week, especially when The Boy started asking for it.  I had broken out routine.  And I had to explain to him that Mommy was sick.  Promising him cookies seemed to work.  And the session was soon forgotten.  But its days later and I'm still feeling the guilt of it.      

Because guilt is inevitable. It comes with the territory of being a mother. There are layers of it.  As a working mother - who is also in graduate school - I have an extra layer.  And as the mother of a child with autism, an extra two to three layers are added on top of that.  

Am I spending enough time with The Boy?
Am I doing enough? 
Why haven't I started the GFCF diet again?

Why don't I schedule more playdates?
Maybe I should try _______ therapy?  AquaticEquine? Take your pick or choose from any of these here.

Obviously, I know that missing one OT session isn't going to make or break The Boy. And I know that not every single moment of our lives can be made into a lesson, session or life changing moment.  I try to remind myself that I am doing the best I can and that sometimes, when my body is tired - I have to let it rest.  Otherwise I'll be useless.  But still, this is easier written than believed. 

How do you cope with guilt?                           

Saturday, May 21, 2011

Sesame Street: "What I Am" by Will I Am (video & lyrics)

Heard this song yesterday.  A friend is having her (typical) kindergarten class perform at graduation.  
But I think it's a great song to teach our kids.  Enjoy!  

If what I am is what's in me 

Then I'll stay strong - that's who I'll be 
and I will always be the best 
"me" that I can be. 

There's only one me, I am it 
have a dream I'll follow it 
It's up to me to try. 

Oh! I'm a keep my head up high 
Keep on reaching high 
Never gonna quit 
I'll be getting stronger. 

And nothing's gonna bring me down (no!) 
Never gonna stop, gotta go. 
Because I know 
I'll keep getting stronger. 

And what I am is thoughtful 
what I am is musical 
what I am is smart 
and what I am is brave 
what I am is helpful 
what I am is special 
There's nothing I can't achieve. 
Because in myself I believe in oh... 

Gonna keep our heads up high 

Keep on reaching high 
Never gonna quit 
Just keep getting stronger. 

And nothing's gonna bring us down (no!) 
Never give it up, gotta go. 
Because I know 
I'll keep getting stronger. 

What I am is super 
what I am is proud 
what I am is friendly 
what I am is grouchy 
what you are is magical 
what you are is special 

There's nothing I can't achieve. 
Because in myself I believe in oh... 

Gonna hold my head up high 

Keep on reaching high 
Never gonna stop 
I'll be getting stronger. 

Nothing's gonna bring me down (no!) 
Never give it up gotta go, oh... yeah... 
I'll keep getting strong--er.

Thursday, May 19, 2011

Hope is on the Horizon (Part 1)

It's official. We have secured kindergarten placement for the Fall. 

No it's not any of the private schools I applied to and it's certainly not the $93,000 Money Bags School.

It's not a District 75 school either.  It's a new program under the NY Board of Education called ASD Horizon* in Public (Community) School. The program is for the kids in the middle. The kids who aren't quite ready for ASD Nest (they take Aspergers/HFA kids) and who are slightly higher functioning than the children in District 75.  (I know, I know, I hate labels but it's the nature of the beast.)

I actually heard about the program months ago through a friend but was reminded of it during The Big One.  I'll admit, I was skeptical.  After so many rejections I thought it was a waste of time.  But on a whim, I sent my email inquiring about the program. Within hours, I got a response.  The next week - The Boy had been observed at his school and I was invited to tour the Horizon progrom. They even said I could bring The Boy with me.

I met with Principal T and instantly her passion and dedication were clear. She showed me the kindergarten classroom.  My initial reaction was: could The Boy fit in here?  But I told myself, these kids were a year older and they were used to the routine.  Because the work that they were doing - The Boy could do. The class of consisted three boys and one girl. They followed the teachers instructions. They were wearing uniforms and at a quick glance, they looked "typical."  I never would have guessed any of these kids had an IEP. 

And then there was me and The Boy.  Me holding The Boy's hand tightly. Him pulling me in every direction trying to grab the toys.  Going for the computer.  And anything else within his reach.  A new room.  A new place.  It was sensory overload.  Thank goodness for Laura Numeroff's "If You Give a Mouse a Cookie!"  Because The Boy started reading: If you give a mouse a cookie.  Written by Laura Joffe Numeroff.  Illustrated by Felicia Bond

The Boy made eye contact with the teacher - Mrs. P. The Boy was answering her questions. And I felt proud. I could tell that by the looks on the teacher and principal's face that they were surprised. Most people are. At first glance it's easy to assume The Boy has no language.  Easier to assume that he cannot make that social connection. 

The Boy and I walked out of the classroom and continued with the tour.  I was pleasantly surprised by the school, staff and resources.  The more I walked around, the more I wanted The Boy to be accepted. When we were done, we returned to the Principal T's office.  I spoke to her honestly about everything we had been through in the last year. The applications, the tours, the rejections, the acceptance to the school we could never afford.  I told her I wasn't sure about District 75.  That I didn't want The Boy to be the highest functioning kid in the class.   

"He's bright. He's a sponge. He wants to learn. He has the capacity to learn - it's his behaviors, they get in the way. But once you get him to focus - he'll do the work."  I told her.

I told her my frustrations with the private schools - the schools that accepted the autism classification but accepted children who didn't have behaviors.  "How do you have a program for children on the spectrum and refuse to address the behaviors?" I felt the crack in my voice.  The crack that comes before the cry.  Because I get emotional talking about him.  Because I'm tired and stressed out and frantic.  And when it comes to him and getting the things that he needs - pride and humility sort of fly out the window.

And then Principal T said something I haven't heard in a while: It's up to you.  If you want him to come here, it's up to you.  We'll give him a chance.  

Just like that.  

I stood up and asked if I could give her a hug.  I apologized if it was inappropriate.  Bu how could I not?  No one had given me option before.  And here was Principal T - meeting us for the first time and giving me a choice.

More importantly - giving The Boy a chance.  And that's all that I really wanted.  It's all any parent wants for their children - atypical or otherwise.


You can read Hope is on the Horizon (Part 2) by clicking HERE

The ASD Horizon program is a 6:1:1 program in a community school for children on the autism spectrum. This program is a collaboration with the New England Center for Children and utilizes the ACE (Autism Curriculum Encyclopedia) curriculum. ACE is an interactive database whereby students benefit from individualized instructional plans. Instruction is based on the principles of Applied Behavior Analysis.

Tuesday, May 17, 2011

The Queen of the What Ifs

"I always ask myself a million questions."

That's the first line of Norma Klein's book "The Queen of the What Ifs."  I read this book when I was in the 6th or 7th grade and for some reason, it has stayed with me.

And last night at around midnight - I thought of this book.  Well, not so much the book but the title.  Another night of insomnia and playing the "What If" game.  It's not fun.  Because if I'm going to be plagued with "what if" questions, I would prefer to be sitting on the steps of my summer home, barefoot, skinny and young enough to be wearing short shorts and just running my fingers through me hair watching the sun set.   

Instead, it's 2 am and I'm in my jammies, sitting on my sofa in my 2 bedroom apartment, with my lap top reading blog posts and updating my Facebook status because I have a million questions keeping me up.   

What if The Boy hates his new school?
What if the new teacher(s) can't manage The Boy's behavior?
What if they ask him to leave?
What if the 'typical' kids make fun of him?
What if he doesn't have the proper amount of support?
What if I'm pushing him too much?
What if he's not ready to navigate a community school?

and the biggest what if of all -

What if I'm making the wrong decision? 

I would have thought that a public school acceptance for The Boy would have provided me with a good night's sleep.  I haven't had one, in well...about a year.  I'm tired.  I guess I'll sleep by September or October.

What "What If" questions keep you up at night?    


Monday, May 16, 2011

Autism is Autism

When we were going through the evaluation process and even after The Boy's Autism diagnosis, many people told me to be grateful that it's only Autism.  At one point, I was told that I should get over autism because it wasn't anything The Boy "could die from."  As if Autism was no biggie.  Because, after all, The Boy - with the exception of Autism - was healthy.

It's easy to feel guility.  I think it's expected.    

A few weeks ago I met a father named "Jimmy" and his son "Junior" after a therapy session.  We were getting ready to leave and they were walking in.  Jimmy held Junior's hand tightly, helped Junior remove his shoes and socks.  Junior flapped his hands just like The Boy.  I started talking to Jimmy about school placement, therapies and my frustrations with the Board of Education.

"We caught it early - 18 months.  And he's come a long way but Junior don't talk.  I have an older son - he's normal you know.  It be nice if they could play like brothers," Jimmy told me.

My husband walked in and The Boy immediately smiled and said "Hey Dad!"  The Boy was especially talkative that afternoon.  I looked over at Jimmy and I remember wishing The Boy would be quiet.  Our children were the same age.  Mine could speak.  His could not.  I felt ashamed comparing our situations.

Because in some way - we had it easier.  The Boy can't carry on a spontaneous back and forth conversation.  I can't ask him what he had for lunch and have him tell me.  I can't ask him who he played with today.  But The Boy could tell me if he were hungry, if he had to go to the bathroom - if he wanted a particular book or toy.  Who the hell was I to think that I could relate to Jimmy?

That same week, I read a post by Hartley Steiner "Comparison is Dangerous." If you haven't read it - you should.  No - You MUST.  Steiner writes: 

Comparison is a dangerous thing. Yes, keeping life in perspective is a good thing, or at least it should be, but comparing your life to another’s is bad.
Our lives don’t compare to others – those that appear to have things ‘easier’ than we do and those that appear to have things ‘worse’ than we do.
Pain is pain.  Struggle is struggle.  It doesn't have to be a certain amount to qualify as 'enough'.
image: Dan/FreeDigitalPhotos.net
Steiner's post put things in perspective and validated everything I have been feeling.  Autism is an invisible disability, easy to dismiss.  As a spectrum disorder there are many variations: low functioning, high functioning; verbal, non-verbal; aspergers, autism, PDD.  But I hate labels. Don't you? 

Autism is Autism.   

And we're still on the same side of the fence.

Sunday, May 15, 2011

A Prison of Hope

"I cannot be an optimist but I am a prisoner of hope." Cornel West

The other day I came across this quote and it totally summed up my feelings about - well almost everything related to autism and The Boy's diagnosis.  

I cannot be optimistic when I have to fight for services that The Boy needs.
I cannot be optimistic when District Officials have told me "It doesn't matter how much services you bombard him with, you still may not get the outcome you want."

I cannot be optimistic when after applying to eight schools - the only school that accepted him, costs $93,000 a year.  

I cannot be optimistic about the state of the special education system when there are budget cuts and schools that are without occupational, physical and speech therapists.     

I cannot be optimistic when I hear about center based service providers closing their programs due to lack of funding.  

I cannot be optimistic when I ask coordinators, social workers, teachers, service providers, district officials questions and the answer that I hear is usually "I don't know."

How can I be optimistic about a system - a government - that is failing our children & growing population of adults living with autism?
Yet I continue to hope.  I am held captive by it.  Because I write letters and petitions.  I make phone calls and attend meetings.  And I write about our world.  Always hoping against hope.  

I associate with "prisoner of hope" not because I consider my life with The Boy a prison.  But because our world, at times, is a lonely place where time passes slowly.  And every day there is uncertainty.  Because nothing is guaranteed.  Because our lives seem disconnected from everyone else's.  And all the things I cannot be optimistic about, confine me.  Worry and concern are constant.  Still hope is always present.  Hope sustains me.  Hope can exist within the pessimist. While it's difficult to be optimistic about the world in which we live, I continue to hope for the best for The Boy. 

More often than not, The Boy will do something, say something that I haven't seen or heard before. Something that will put every challenge in perspective.  Something that will make me pause and savor the moment.  Moments that bring tears to my eyes and thank the God that I tend not to believe in, because I know how much work it took to master a task that comes so easily to his peers.  

And every so often I will talk to someone who provides me with the answers I seek or refers me to a program.  Every so often I will see something or read something about a person or community making an impact.  Someone who challenges the system, who takes matters into their own hands.  And I am provided with a temporary release.  A parole from my prison.  And I think, maybe there is hope beyond the walls of our world.