Posts Tagged "obstacles"

Autism by Any Other Name…

Posted by on Mar 12, 2012 | 11 comments

Autism by Any Other Name…

What’s in a label?  I mean, really?  I know the whole “a rose by any other name…” spiel, but I also know that sometimes labels are there for a reason.  Sometimes the label helps you to understand what’s inside the package a little better.

It’s been four and a half years since we first had Jack assessed by Early Intervention in Los Angeles and we took the first steps on this journey of a lifetime together.  It’s been three and a half years since he was formally diagnosed with autism spectrum disorder, autism or ASD for short.

At the time, I had mixed feelings about my child being “labeled”.  I knew that with a formal diagnosis of autism the doors of opportunity would magically open for Jack, and he would be supported both at school and socially, at least through early adulthood.  I also knew that for some people in his life, a label served to “explain” Jack a little bit, and made it easier to understand him.

On the flip side, labeling a child for life can be a harsh thing.  Jack will forever carry a stamp on his forehead, or so I thought at the time, that will cause people to judge my child before he has a chance to show his true self.  This reality shattered me and broke me to my very core.  No parent wants their child to suffer, especially for something he can’t change.

I had no idea how we, he, would reconcile these two very different aspects of the one little word, autism.

What I, we, discovered, is a whole new world just waiting for us with open arms.  People who helped us see the beauty in the chaos, the light in the sometimes profound darkness.  Therapists, teachers, professionals, parent, people who have been walking the same path for a while, and those who have just begun.  People who understood the strangeness that is our reality now, and don’t think it’s actually that strange.  People who cheer things others take for granted.  People who laugh with us at the absurdity of it all.   We found community.

Launching this site definitely helped me.  I started it with the intention of sharing my deliriously funny child with the world, and got so very much more in return.  The inkling of an idea I had in the beginning was reinforced in spades: autism is a gift.  For Jack, for me, for our family.

So, four and a half years on, we are at peace.  Autism is still quite often a daily struggle, but it’s also an integral part of our family.  There are so many experiences and people and perspectives we might never have been exposed to had autism never entered our lives.  I have said it many times before, and I will say it again now: I will go to the ends of the earth to alleviate the things about autism that are painful, hard and stressful for Jack, but I will not wish for him to be “normal”. Jack is the person he is because of autism, and he is beautiful.

A leap into the future.

We are at peace.  Well, we were.  Not now.

We moved to Canada a year and a half ago, and we love it here.  The children are happy, mama and daddy are happy, the family is happy.  It was a good move.

When we got here, Jack was immediately taken in by his new school, and once they assessed his situation, he was given full support.  He transferred to the school near our home this year (he had been on the wait list), and they welcomed him with open arms and a full-time SEA (special education assistant).  He is in the grade one French Immersion program and doing really well.  He’s had no support outside of school, though, because that requires funding from the British Columbia provincial government.  In order to get that, Jack needed to be diagnosed again by a Canadian doctor.  Not a problem, we thought, the only issue is a possible year-long wait list.

We had no idea the wait would be the least of our problems.

The clinic in our area that does the autism assessments contacted us a couple of weeks ago and I began a conversation with a wonderful caseworker.  She requested copies of many of Jack’s reports, IEP’s, etc., so I started scanning and emailing forms.  I think I sent well over a hundred pages out of my four-inch-thick “big book of Jack”, which includes every report, letter, IEP and piece of paper concerning autism that I’ve collected since we started all of this back in August of 2007.

In the interim, I was hearing horror stories from other local parents about how their children had been misdiagnosed with ADHD or not diagnosed at all for years.  Parents who finally, in desperation, paid thousands of dollars out of pocket to hire private clinics to take a closer look at their child and give a more accurate diagnosis.

I was nervous, but held firm to the belief that we’d be fine.  After all, Jack was formally diagnosed by not just one, but two doctors, completely independent of one another.  He has had years of occupational therapy and speech therapy, spent three years in collaborative preschools with special education teachers, had a year of in-home ABA therapy, and has always had a full-time support person in school (Behavioral Interventionist in the US, SEA in Canada).  He has been supported by the Lanterman Regional Center, Working With Autism (for both BI and ABA support), several independent occupational therapy centers, and the Los Angeles United School District (LAUSD). No less than 22 full-time professionals in the last four years have worked with and for Jack.

Every one of these people have and continue to support Jack (including several in Los Angeles, who I consider to be his “team”, and I consult before any big decisions, like putting him into French Immersion).  My husband and I have worked hard.  Jack has, and does work hard.  It’s an ongoing job, and it’s paying off.

Evidently, too well.

The wonderful woman I was in contact with at the clinic here in BC thought of us when a cancellation came up last week, and we scrambled and made the appointment, mere hours after she called.  It was a simple assessment, just another ADOS.  Jack didn’t have school that day due to a teachers’ strike, and he was excited to go play games and work puzzles.  He was engaged.

The doctor’s verdict shouldn’t have shocked me, but it did. She said he “barely met her parameters” for autism, and she was more inclined toward PDD. My heart sank, tears welled in my eyes.

In California, as with many of the United States, PDD does not count as “real” autism.  Close, but no cigar.

All I could think was that all the years of hard work led us to this.  There is no cure for autism, but I guess if you’re close enough to “pass”, you can fall off the spectrum and get shut out of the community.

Both the doctor and caseworker were very quick to assure me that in Canada, PDD and ASD are treated the same.  They both receive the same funding and the same designation from the government. There was still some discussion as to whether they would push for a speech evaluation and more thorough psych exam, but for the moment at least, I was assuaged.

I slept on it for a few days, and became less so.  I realized that I was not, in fact ok with this new diagnosis.  I am very far from ok with it.  My child has autism, not PDD.  I know this.  Everyone who knows Jack knows this.  How can all of the people who have worked so closely with him for so long be wrong? I thought of all the things I didn’t mention in my part of the interview, all the obstacles he’s overcome, all of the “bad” things we’ve dealt with.  I wondered if perhaps I had gotten too cocky and Jack had had too “good” a day.  A perfect storm of neurotypicality, if you will.

After a sleepless night hashing it over in my mind, I sent the caseworker an email asking, politely, that they pursue the additional assessments.  I explained that I understand their position, but in my mind, autism just doesn’t disappear.  I don’t know how much influence I had in the decision, but within a day I got the call that they would, in fact, be going ahead with the evaluations.

I felt some relief, yet a nagging voice in my brain just wouldn’t quit. “I’m not ok,” it said. “I need it to be autism.”

Why?  Why am I so afraid of losing autism?  Why am I afraid of losing what is essentially just a label?  Jack will still be the same person he’s always been, whether his file says “autism” or “PDD” or “purple-winged boogie monster”.  He will still be my hilarious, socially-challenged but eternally endearing, beautiful boy.  Jack will not change without autism.

Or will he? In my mind, he, we, will lose identity.  Community.  Future. When Jack was first diagnosed, I took a deep breath and told myself “here we go, this is his/our life now”.  I never dreamed that would change.  Sure, I expected and hoped for him to adapt and learn and in some ways acclimate, but I never thought for a second the autism would go away.  That just doesn’t happen.

And there it was.  I need autism now.  It’s a part of me. It’s who Jack is, it’s who I am as Jack’s mama, it’s who we are as a family.  Autism joined our family the same day Jack did, and it’ll be with us just as long.

And I suppose if the official diagnosis stands at PDD, not much will change.  Life as we know it will roll on, and Jack will continue to be hilarious and socially-challenged and endearing. And I will stubbornly cling to the name of this website.

In the end, it’s just another stop on our journey together.  Autism really is a trip.

The family that autism built.

*************************************************

**UPDATE**

I had a few more thoughts on this, so make sure you read the follow-up here.

Share this: name;?> | name;?> | name;?> | name;?> | name;?> | name;?> Read More

An Inconvenient Truth

Posted by on Aug 9, 2011 | 4 comments

It’s time for me to accept the truth: my son cannot go to the Real Canadian Superstore anymore.  Every single visit ends with him screaming at the top of his lungs at the checkout, flailing his body to the ground and refusing to leave for some reason or another.  I just can’t do it anymore.

Jack used to be great in the grocery store.  We’ve always done the bulk of our shopping as a family, so he’s had years of experience.  The only fear I ever had while shopping with him was the bathrooms at Target – they were horribly loud, and he would scream and grab at the doors to leave any time a toilet flushed or someone came over the loudspeaker.  Considering I spent a great deal of his early life pregnant with his brothers and using the bathroom every ten minutes or so, this was a pretty big issue.  Our amazing ABA Christine spent several Sundays at Target with us, helping him overcome his fear of the dreaded bathrooms.  He’s still skittish, but more often than not he soldiers through.

Past that, though, we’ve never really had a problem with him in stores.  I mean, more than any other young child (we’ve all had that shopping trip from hell with the screeching, flailing, unhappy kid).

Enter the Real Canadian Superstore, and the beginning of the trying times.

At first, we attributed Jack’s outbursts to the free cookies they give away in the bakery.  We assumed there were artificial colors or flavors or another nefarious ingredient causing his sudden decline.  When we put a stop to the cookie train, we figured the tantrums would end, too.  We were quite wrong.  We tried everything: we went before the park, after the park, in the morning, in the evening, on a full stomach, by himself, with his brothers, in the cart and letting him run free.  Every trip has ended the same way, with him completely falling apart at the register.

Sometimes it’s because I didn’t purchase something he thought we were going to buy (craft supplies last week, charcoal the other day).  Sometimes it’s because he wants to put the money into the machine at the U-Scan.  Sometimes it’s just a day that ends in “y”.  There is no pattern.

So today, after an especially difficult time getting Jack out to the car and into his seat (he had been screaming at the top of his lungs inside the store and wouldn’t calm down, so David had to take him out), I gave up.  I sat in my seat, looked at my husband, and gave up.

I want it known that I don’t give up easily.  I fight on a daily basis so that my child can and will do “normal” things like go to the grocery store with his family without losing his mind.  I fight so other people will not judge him or give him a label that locks him in a little box.  I fight out loud so that people will stare at me, not him.  I want him stared at because of the joy he radiates, not the anxiety and frustration his mind causes him sometimes.

But I just can’t deal with the Superstore anymore.  At least not until I can find a Canadian version of Christine to help figure out what bugs him so much about that particular establishment.   It’s a puzzle we’ll solve in time, I know, but today I need a break.  I think Jack needs a break, too.  We’ll find a new store he can tolerate, or I’ll do all of the shopping while he stays in the car with his Daddy.

I’m giving up today, so I can fight again tomorrow.

standing on a beach

Share this: name;?> | name;?> | name;?> | name;?> | name;?> | name;?> Read More

"No Kids"? No Thanks.

Posted by on Jul 27, 2011 | 49 comments

"No Kids"?  No Thanks.

I read an article today about a “movement” that’s gaining momentum: no kids allowed.  No kids in restaurants.  Adults-only shopping hours at grocery stores.  Children not allowed on airlines, in movie theatres, in certain outdoor parks.  The comments below the article all seemed to agree, adding other locations a “no kids allowed” policy  might be implemented (Disneyland???). When I finished reading, I sat down and had a good, old-fashioned anxiety attack.

It took me a bit to understand why I was having such a visceral reaction.  After all, I don’t want my movie or meal  ruined by a screaming child, either.  I went over the article and comments in my head, and found the root of my dis-ease.  The underlying message is not that adults would like to enjoy a quiet evening once in a while, it’s that children, by their very essence, are annoying and should be either controlled or kept at home.

I admit, I enjoy the “everyone pays the same price policy” at the Arclight Cinema in Los Angeles, where if you want to take your infant to the movies, you pay full price.  It makes for a consistently nicer movie-going experience than most theatres.  They even have 21+ shows where they sell alcohol for those who want a truly child-free experience (or just want to have some drinks with their movie).   I also have no problem with restaurants that do not offer a separate child menu.  Having worked in high-end restaurants for years, I know that families who enjoy finer dining experiences with their children know how to order for them without inconveniencing the kitchen (or they learn quickly).  We have always taken our children to nice restaurants, and rarely order “kid meals.”

My point is the people behind the “no kids” movement seem to want a child-free life.  They don’t want to encounter children anywhere it’s not “acceptable,” and want the kids they do come across to be well-behaved.  Many of the comments talked about children throwing tantrums in stores, acting out in restaurants and actually being on airplanes, and the unqualified parents who allow it to happen.  In their eyes, any child who isn’t smiling and polite (or asleep) is an annoyance.

My children being annoying.

I’m certain there will be a backlash against this movement across the mommy blogosphere, and endless debate about where and when children should or should not be allowed.   The idea I want discussed, though, and the reason for my anxiety attack, is how autism fits into this Utopian adults-only world.

As I calmed down, I realized I had the same gut-wrenching feeling I get when Jack throws himself on the ground screeching, blocking the entrance to the grocery store (this happens pretty much every time we go there lately, for any number of reasons).  It’s the same shaking inside that happens when we go to a restaurant and there’s no seating that will keep my kids contained (we like small chairs and a highchair for Kieran, or a booth where we can sit on the ends and block them in).  The same tightening in my chest, clenched jaw and wringing hands I get when I even contemplate air travel.

I don’t worry about being judged.  If I cared about what other people thought of me or my children when something unexpected happened I would never leave the house (although the stares at the grocery store or in the park when we try to leave and Jack melts down are pretty penetrating).  What I fear is a society that has become so self-involved that it has lost sight of the importance of children, and expects them to act like something they’re not, like adults.  I fear for a community that would rather me keep my child behind closed doors than have him and his not-always-stellar behaviour sully their afternoon.

And what of the mother in the grocery store dealing with a screeching child?  According to the article’s commenters, I should immediately remove him when he acts out, and come back when he’s better (or better yet, leave him at home).  What does that say to my child ?  I’ll tell you what – it tells him a whole host of things in one action.  By removing my tantruming son he learns that he can leave any situation whenever he wants by screaming.  It teaches him that I don’t care about why he’s upset, just that he’s making people uncomfortable, which is more important than his needs. My child understands that his value as a person is less than his elders.

He is not less than you.

There are also other factors that may be at play – a mother with a screaming child may not have another chance to buy groceries and needs to push through.  She may have a child who simply hates being in a shopping cart (yet she cannot allow him to run for various reasons).  Or, she may feel the same way I do, that lessons must be learned, and sometimes it’s inconvenient.  She may also have a special needs child who simply cannot follow made-up rules.

I have three young children and I understand that they can be loud sometimes.  They often run, get worked-up and refuse to settle down.  For these reasons and more we don’t take them a lot of places we don’t have to, like restaurants during peak business hours and movies in the evening.  The times that we have to go somewhere with them that we wouldn’t ordinarily go, I break out in cold sweats until it’s over.  I do not like when I can’t anticipate Jack’s behaviour; forewarned is forearmed.  My kids are normally very well-behaved in restaurants, but if they haven’t napped or Jack is in a mood (which the others will follow), it can be a trying experience.

I can’t even think about flying without my stomach turning.  We flew a lot with Jack when he was a baby, and have flown several times with two or three children in tow.  The last flight was over two years ago, though, and I don’t know when we’ll fly again, even though my family is on the other side of the continent from us.  Things have changed in two years, both with the airlines and our family.  Each child requires their own seat now, which means we have to split up into two rows (and some unfortunate soul gets to sit with us).  I cannot envision a four-hour span of time when any of my boys would sit still in a seat, and a simple airplane seat belt won’t keep them restrained.  Delays, overbooking, car rentals, time zone changes and unhappy seatmates all add to my newfound fear of flying.

It’s the thought of getting through security, though, that keeps me up at night.  The security line is a nightmare for families already, a juggling act of shoes and folding strollers and backpacks and unrestrained children forced to go through alone.  I don’t know when Jack will object to being touched or get spooked and run away or simply throw himself to the ground and object wholly to the process.  I can’t be certain neither of my other children will follow suit.  It’s enough to keep me home, as much as I miss my family and I know they miss us.

Taking all of this into consideration, it’s amazing parents of special needs children fly at all.  Heck, it’s amazing parents fly at all.  But you know what?  They do, and they pay good money to do it, too.  Nobody truly enjoys being cooped up in an airplane for an extended period of time, but a little civility goes a long way.  Creating rules against children traveling by air is nothing short of ageism.

The idea that there are people out there who would impose rules on where my children are allowed to be is laughable to me.  It’s infuriating and obscene.  Yes, there are parents who exercise questionable judgment and take their toddlers to the evening showtimes.  There are parents who don’t pay a lot of attention to their kids in busy restaurants.  And yes, there are mothers who let their children scream in the grocery store when they really don’t have to.  There are also adults who have either forgotten what small children are like or think they were well-behaved at all times as youngsters.  There are adults who think money can buy them an insulated life.  There are adults who have no empathy, sympathy or common decency.

Parents of special needs children make choices every day about where they can and cannot go, sometimes changing plans in the blink of an eye.  They juggle the comfort of their children, themselves, and yes, others.  Sometimes their children are angels, and sometimes they are not.  Their lives are difficult enough without added, arbitrary restriction.

If we teach our kids now that to be a child is to be annoying, they will pay that forward.  If we show them that the needs of an adult to be comfortable circumcedes their need to be understood, we will all pay in the end.  If we hide autism behind closed doors, we lose the future.

And now, a moment of zen.

Share this: name;?> | name;?> | name;?> | name;?> | name;?> | name;?> Read More

Frustration and Strength

Posted by on Jun 20, 2011 | 2 comments

One year ago next week, we moved our family from Los Angeles to British Columbia, just South of Vancouver.  We left our life behind – my husband’s job, our friends, our autism support network – in search of one more suited to raising both physically and mentally healthy children.*

From the moment Jack was born we understood that we’d eventually have to leave Los Angeles.  We weren’t sure where or when, we just knew that ultimately we didn’t want to raise our children in the chaos of Hollywood.

This is Us

My husband was born in Canada, and we had talked about the possibility of moving there one day.  We realized that a move of that magnitude would have to be planned well in advance, so three years ago we made a big decision:  we decided that we would be moved and settled in time for Jack to start Kindergarten.  We wanted him to start his elementary school career where he would most likely end it, in British Columbia.

Waiting for Tim Horton

Everyone knows the old adage about best-laid plans, and it turned out no differently for us.  We spent the better part of two years thinking about moving, and the last two months packing frantically.  There wasn’t much we could do ahead of our landing; Jack couldn’t be registered for school until a week before it opened.  We spent our summer moving, exploring and getting to know our new homeland, with the endless support of my husband’s Canadian relatives.

Nobody we knew had any experience with autism in Canada, however, so we were pretty much on our own.  I was led to believe that all would be fine once Jack started school, and essentially, it was.  Well, eventually.  Unlike the California system, where most ASD interventions are handled through the school district (with a few social interventions serviced by regional centres), any at-home services in British Columbia are dealt with through the medical system.  Coming from a country where the mere whisper of autism could exclude my child from medical coverage for life, having him embraced by the medical community is nothing short of a miracle.

A miracle with a pretty startling caveat, unfortunately.

Jack was welcomed into his new school with open arms and given an IEP as quickly as possible.  It took about six weeks to get it together, but that’s not the fault of the school or his integration teacher – had we enrolled him the previous winter like most children, everything would have been handled well before his arrival in the classroom.

The first two months of kindergarten were a test both for Jack and his teacher, as he had no in-class support.  He was overwhelmed by the class size, the structure and the language (he is in a French immersion program, where nothing but French is spoken in the classroom).  He was barely learning, as he wasn’t able to focus or attend.  He frequently ran around in the halls and posed a flight risk, and therefore spent a lot of the early days sitting in the Assistant Principal’s office (not for punishment, but for the good of both his teacher and himself).  It was heartbreaking to see my brilliant boy stuck in an “autism stereotype”:  the unruly, unteachable child.

Lost Boy

Then one day he was assigned a full-time SEA, Mme W. (a special education assistant, like his Behaviour Interventionists Eric and Charlie and Geoff in LA), and the planets shifted back into alignment.  Within days Jack was attending, learning, and settling into his skin.  He has blossomed under her guidance, and has thrived in the classroom.  I know his teacher will attest to this.  I also know she deserves a vacation somewhere warm this summer, although I’ll probably just give her some cookies.

My cookies are awesome, actually

Back to the miracle with a catch.  While Jack was accepted into his school and given support without question, we were unable to get him any interventions through his medical plan without an “official” diagnosis of autism.  Not a problem, I thought, as I have a binder four inches thick with reports and documentation and IEP’s.  I dutifully filled out a pile of paperwork, made endless copies and shipped a package off to Victoria for approval by the Ministry of Health.  Once we got their go-ahead, Jack would be eligible for government funding and we’d be able to set up some ABA for him.

The Ministry set us straight pretty quickly.  My big huge binder meant nothing to them.  In order to qualify for funding, Jack must be diagnosed by a Canadian doctor, who you can only reach by first navigating an obstacle course of bureaucracy.  The first step is the family doctor, who then referred us to a pediatrician (a six-week wait), who sent us for a blood test and put us on the waiting list for the ONE clinic where they do diagnoses.

That waiting list is currently 18 months long.

I don’t really know what else to say other than I am stunned and amazed by this.  Once children are “in” the system in British Columbia they receive top-notch care, but the wait can be interminable if the child is in need of immediate attention.  There is a private clinic that will diagnose children quicker (their wait list is only four months the last time I checked), but unless we can somehow come up with $1500, that’s not an option.

The real kicker is British Columbia provides generous funding for children up to age six.  After age six there is still money available, but it’s less than one-third the amount for younger children.   Jack turns six in October, so there’s just no way we’ll get full funding for him.  Even if we’d gotten him on the list the second we landed in Canada he most likely wouldn’t have been seen in time.

I have learned a lot about myself and our family in the last few months as we’ve wound our way through the BC autism maze.  I have realized that we are so, so very lucky.  There are many children on the too-long list that are unable to communicate, and won’t be able to until their number is drawn and their funding approved.

I know now how strong our personal autism foundation is, and what it took to get us here. Every hour spent in occupational therapy and speech therapy and the inclusive infant program and collaborative preschool was worth it.  Every minute shared with the multitude of amazing people who gave of themselves so Jack could be the person he was meant to be is sacred.**  Every period of change that Jack’s gone through, every disruption and every tantrum was another chance for us to learn how to support him.  It was worth every second.

The Kindergarten Graduate

Most importantly, as frustrated as I am, I know that even without funding Jack will be ok.  We will be ok.  We made it through last summer without any services, and we’ll make it through this summer, too.  We are strong, and we have been given the tools to guide us no matter the situation.  If I didn’t think we could do this alone, I might be screaming.

Instead, I’m wondering what I can do, as one person, to help the system here.  I’m thinking about the children who don’t have the foundation we have, whose families don’t have the tools or the strength to make it 18 months, through no fault of their own.  Maybe we can help in some small, simple way.  I hope so.

What a difference a year makes.

 

 

*********************************

*I would like to point out that many, many dear friends of ours are successfully raising children in Southern California, and I in no way mean any disrespect to them.  As much as we wanted it to be, SoCal just wasn’t a good fit for us as a family.

**Amelia, Deborah, Shelby, Jane, Amanda, Eric, Charlie, Geoff, Jesse, Mrs. Colbin, Christine, and everyone else I’m forgetting right now… you know who you are, and you know you are loved.

Share this: name;?> | name;?> | name;?> | name;?> | name;?> | name;?> Read More

A Little Help?

Posted by on Jan 4, 2011 | 4 comments

I’m working on some posts to put up over the next few days, but right now I’m coming to you with a request.  I have a mama friend in Michigan with a five-year-old with an ASD dx, a four-year-old who is being assessed, and an 18-month-old with sensory issues.  She’s new to the state and needs information on how to get ABA services for her oldest.  Is anyone out there familiar with navigating the special needs support process in Michigan?  She can’t afford an advocate and would appreciate any help you can give.  Please feel free to comment here or in the discussion area on the Facebook page, and please let me know if you’d like to contact her directly.

Thank you in advance for all of your help, and I’ll return with some laughs tomorrow!

Share this: name;?> | name;?> | name;?> | name;?> | name;?> | name;?> Read More