Less Traveled Roads

I shall be telling this with a sigh

Somewhere ages and ages hence:
Two roads diverged in a wood, and I--
I took the one less traveled by,
And that has made all the difference

--Robert Frost

There is this famous essay by Emily Perl Kingsley called Welcome to Holland. In this essay, she compares the difference between parenting a 'typical' child and a 'special needs' child to planning a trip to Italy, but ending up in Holland. While it is an interesting analogy, it sounds too easy. No offense, but Holland and Italy both sound pretty swell to me.

For me, I tend to think of it a little differently. I look at parenting like taking a walk in the woods. Now, most parents hike the well worn trail. It is wide and well traveled, with many other parents hiking right along side you. You see similar overlooks and panoramas, beautiful vistas and mountain creeks. There are definitely hills to climb, bugs to avoid, and the occasional rain storm. And sometimes you are the unfortunate one to step in the doggie-doo or trip on a big rock. But you have the benefit of others who travel with you on this same path, and mostly share the same experience.

For the parent of a special needs child, parenting is different. There is only a very thin trail, or maybe no path at all. Grass and tall weeds cover the forest floor, and there are unexpected mud pits that suck your shoes in. There is wildlife galore; some of it beautiful and some of it scary and dangerous. Gnatty, swarmy bugs bite. You aren't very sure where you are going or what direction to take, and the few guidebooks or fellow travelers you meet all have a different opinion or direction in mind. Mostly you hike alone, but occasionally meet others who hike these woods too. They know your hike because they are doing it as well. They can share tips and tricks to making it though the woods. But always you must hike on your own, because no one's journey is the same. Eventually you learn to navigate this woods. Slowly but surely you learn to avoid the mud pits, to defend against the scary critters, and to cut though the tall grasses in order to make the journey go more smoothly. And you hope that you are going in the right direction and that you aren't going to run into a bear or a mountain lion. You hope for the beautiful vistas, but you are never quite sure where you might end up.

Last week I attended a class on the Individuals with Disabilities Education Act (IDEA). According to Wikipedia, IDEA is a United States federal law that governs how states and public agencies provide early intervention, special education, and related services to children with disabilities. Essentially, IDEA is the rules of the game that States have live by when providing special education services. This course was put on by a parent advocacy group (PACER), and was organized in such a way as to explain to parents the essential "what you need to know" rules. It covered topics such as the evaluation process, getting services, evaluating those services, and how to troubleshoot the issues and conflicts that could come up.

I wanted to take the class because as we approach the J-man aging out of the Birth to Three programs and entering the next phase, we will be starting to revise both the types of services he gets and creating an Individualized Education Plan (IEP) for him. I figured it might be pretty important for me to not only know the rules of the game, but also how to navigate the system. Avoid the mud pits, tall grass, and toothy critters as much as possible.

What struck me was how lost and frustrated so many of the other parents were. One mom, upon learning that she should have been receiving quarterly reports from her son's teachers and that he was grossly overdue for a re-evaluation (by 1 year, no less), burst into tears. Angry pissed-off tears! Another mom's voice cracked and her eyes welled up with tears when she explained that her son would never progress beyond a 4 year old level, and she wondered how she could ever make a meaningful IEPs for him. And yet another mom explained her frustration in finding an appropriate school district for her child in a recent move (been there, done THAT).

We have been so fortunate. Jonathan has a brilliant team and we have had very few struggles thus far. While I worry on a daily basis about where we are going and what we are doing right or wrong, Jonathan could care less. He is happy. And I think... no, I know... that the reason we have had it nice so far is that I am always willing to ask the questions. To be his advocate. And I have enough knowledge and skill that I can do it right. It doesn't mean I am not filled with doubt everyday, but I know we can make it.

My heart breaks for other parents on this journey who are struggling. There is no real guidebook for these woods, and feeling lost, scared, and confused can become a regular event. When people try to live from a place of stress and fear, things always go terribly wrong. And yet, this is where a lot of these families are ....trying to negotiate the forest without a map, a clear trail, and a solid endpoint.

A little spooky...

My analytical side does not believe in fate. It does not believe that God micromanages our lives.  It believes that we have free will, and that events that happen in our lives that seem like fate are really just freakish coincidence.   I am rational, logical, intellectual, and not persuaded by fantastical talk.

And then, there is my other side... my secret side.  This side believes in fate, in a guiding hand of God, in Santa Clause and in the idea that "there are no accidents".

This side looks back on my life and sees some crazy acts of fate.  The way my husband and I met (long story).  The fact that I have this wealth of previous experience and education in the area of early child development and autism, which in many ways primed me to be aware of Jonathan's issues early on instead of catching it later. 

And now, another example of the crazy hand of fate.

In April, 2008, Jonathan was just starting to be evaluated.  The school district hadn't yet started to test him, speech therapy had just started to get involved, and we were waiting on an appointment at Children's Hospital.  Anxiety was high.

One night I was watching the local evening news and saw a story celebrating a "Top Teacher".  Only half watching, I keyed in when the story explained that this teacher worked closely with young children who had autism.  Obviously, given my fears at the time, this caught my attention.  I distinctly remember thinking "If needed, I wonder how we would get Jonathan in her class in the future".

Time passed, and when we expressed concerns about our first teacher, the district very kindly assigned us a new teacher, Ms Kristin. And we have been massively impressed with her ever since... her knowledge, her sensitivity, her willingness to work with us and Jonathan, her observational ability.... I could go on and on.   We sorta felt that the district must have given us their best, given the fact we bitched.

And... strangely... she felt familiar.

Today, something sparked my memory about that news story.  A little Google search later and...



Ms. Kristin is the exact same teacher. THAT is a little spooky...

Of course, they were completely right, Ms. Kristin.  You are a Top Teacher!

A Halloween Preview

I love fall. It is truly my favorite time of year. Alas, our early snowfall makes it seem like we are not likely to get a long, lovely turning of the leaves, picking of the pumpkins, and gentle cooling of the weather. Nonetheless, snow cannot take away one of my all-time favorite holidays: Halloween. Not a "Harvest Festival" either.

HALLOWEEN

Jonathan's first Halloween was only remarkable in how darn cute he was.

Last year, Jonathan begrudgingly let me put him in a costume, but truly hated every minute of it (if you can't tell).

This year, I was hoping he might have some inkling of a favorite character he might want to be. But alas, he is in the very infancy of his imagination, and does not express any favorites as of right now. Nevertheless, he has taken to wearing dress-up clothes at therapy and loves it. He enjoys putting them on and looking in the mirror. He puts on our shoes and tries to walk. So his 'pretending muscles' are starting to flex.

So I think, this Halloween, we are going to have some fun.

Currently, the costumes in the running are:

Sir Jonathan, Knight of the Dinner Table

OR

Jazzy J-Man, the Hip-Hop Fireman

(note the low-hanging pants)

Whatca think?

Support Team J-Man!!!

We are walking in the Childhood Apraxia of Speech Walk-a-Thon here in Minnesota. It may be cold, it may be snowy, but we will be there! With parkas on!

Childhood Apraxia of Speech is a motor planning problem where the areas of the brain that plan and coordinate speech production do not function properly. Essentially, the way I typically explain it is that it is like having a TV and a cable box, but no cord to connect the two. They both may work great, but all you will get is static. The areas of the brain in apraxia are not communicating in such a way as to allow for speech to occur. Because the motor planning is so difficult, other areas of learning can be compromised. Jonathan has Childhood Apraxia of Speech.

So, if you have a little extra coin, consider dropping it toward a great cause. Very little is known about the causes of Childhood Apraxia of Speech, and treatment is often a long road to go down. The CASANA foundation spearheads this effort, providing money for research and education.

So hey, donate to our team: TEAM J-MAN

Just for Fun

Just a quickie fun post.

We had our first snowfall of the season. It was just a little dusting, gone before noon, but J-man insisted on going outside. Mind you, he has been in snow before, but I am not terribly sure he remembers it (he was still pretty little). So coat and hat on, I sent him out on the deck to check it out. He made it about 2 feet, past the grill, and promptly turned about and came inside. Apparently the cold isn't to his liking. I don't blame him.



I read a lot of blogs. Ok, maybe not A LOT, but a few. Most of them are written by parents of special needs kids. I find a lot of insight and inspiration from them. I wanted to share an entry made by one of these blogs (MOM- NOS). Whenever I read this entry it gives me hope not just for J-man, but for the world at large.

Check it out: The purplest.

1 in 100?

Recently I posted the following video clip on Facebook.


Watch CBS News Videos Online

A dear friend of mine, a grad school buddy, suggested that this study mentioned was seriously flawed (indeed that is true) and that the reason we see these increased rates is because of "a broader diagnostic criteria & greater public awareness". He is certainly not the only one to feel this way... that the rates of autism are some kind of statistical anomaly and not truly reflective of "pure autism". And indeed, while these reasons may be a factor in the rate change and prevalence of autism, I would suggest that those reasons are wholly unsatisfying to both why the rate changes are being seen and what these rate changes actually mean.

Of course, there are two possible lines of reasoning for the changes in the rates of autism.

Reason One: the reason no one wants to be true is that there is a real, honest-to-goodness reason why we are seeing more autism. The possibility that... for some unknown, scary reason... children are having some major neurological event either prenatally or in the very early developmental years that results in the unique autism symptomology. The theories range from the the plausible (prenatal exposure to some kind of teratogen, possible autoimmune issues coupled with environmental or viral insult, mitochondrial issues), to the unique (folic acid overload, Vitamin D deficiency) to the crazy-ass (just Google for the nutcases).

People with no children or typical children are scared to death of Reason One... because lets face it.... if it is Reason One, it could happen to your children. It is nicer to think that it is all genetic, and you are safe, and the rate increase is all about Reason Two.

Reason Two: The new rates of autism are a statistical anomaly, the result of over diagnosis or misdiagnosis, or both (whew, thank god.... it isn't real.... anyhoo.... ).

Ok, let's make the assumption that the true occurrence of autism in the world has stayed stable for the last 1000 years (in essence, there is no other reason for more autism). Given that assumption, what are the reasons for the current changes in overall rates in autism diagnosis? The possibilies, as far as I can tell, fall into the following categories:

1) Autism has been historically under-diagnosed. Basically, this assumption suggests that the current rates are more accurate, and that the previous rates (of 1 in 150 kids) suggest a lack of overall diagnostic ability by professionals in the field and that the broader inclusion of mild to moderate cases actually does reflect the same neurological conditions that lead to these specific disorders. Thus, this suggests 50 years ago we either had:

A) A lot of mild to moderate autistic children running around not getting services, and ending up labeled learning disabled, emotionally disturbed, or ultimately becoming diagnosed autistic due worsening symptoms, or

B) The mild to moderate ones "grew out of it" (which experts say can't happen, but whatever)

2.) Autism is being grossly over-diagnosed. Basically, this assumption suggests that there has been a complete frenzy to diagnose kids with autism, even though they might not meet strict criteria. Diagnosticians are misdiagnosing kids because they either are poorly trained in recognizing 'true autism' or are motivated to "get kids services" and the easiest way is to give an autism label. Therefore, the "new autism rates" are a reflection of a misapplication of the diagnostic criteria and a "problematic" and gross broadening of the criteria.

Of course, this assumption then suggests that the kids that are being NOW diagnosed as "mild to moderate autism" are, in fact, either:

A) Just fine... nothing is wrong with them that a swift kick in the ass won't cure;

B) Suffering from some other condition that causes significant language delays, social delays, and/or sensory issues (see my review of Autistic-Like Graham's Story) and apparently we have no words for and no historic precedent for, or;

C) There are always weird kids... that is all they are and were 50 years ago.

3.) Early identification is the reason we see a rise in Autism rates. So, in the last 10-15 years, a lot of education has gone toward getting doctors and educators 'up to speed' on autism spectrum disorders and working toward an early intervention model that allows these kiddos to get services early and improve outcomes. Ok so, more awareness, more reporting, increased rates. Makes sense.

Except, and here is the part I cannot get my head around... then what happened 50 years ago? So, 50 years ago, a kid was not identified as autistic early... in fact, nothing was noticed until school age. Well, there was 1 of 3 possible scenarios:

1) Kid was not truly autistic, or "grew out of " the symptoms by the time he/she reached school age.... enough so the teacher just thought the kid was weird, but not disabled. Probably didn't do awesome in school either. Experts say that can't happen... neurology is neurology... but whatever.

2) Kid was truly autistic and was stimming like a mad-fiend when he entered kindergarten. Which, if this ended up happening the rates would go UP, right.... just the reporting TIME would change, not occurrence.

3) Once the kid entered school and still had some difficulties and behaviors, he was dealt with as LD or emotionally disturbed.


So, does that mean that we are just re-labeling the problem with new words? If the rates have truly remained the same for the last ... oh, say....1000 years, what accounts for these new kids? Are they faking? Misdiagnosed? Brats? Had they been diagnosed as something else 50 years ago? Or not at all?

That is what makes me most curious. IF the rates are really statistical anomalies, then what would we have called these other "new" kids?

Or, is it possible that these mild to moderate cases are really something NEW? That 50 years ago we didn't see these kids because they weren't there... that something more has happened than just some re-labeling shuffle.

I really don't have any answers, but I can say this. In my humble experience, parents of a child who is given an autism diagnosis rarely sit back and just accept it. Generally, every parent I know looks for second, third, and fourth opinions. Indeed, I would guess that the increased awareness even fuels THAT... going out and finding better doctors, more complete evaluations. And even if there is funny business going on (and I am sure there is)... there is a reason for it. No one I know WANTS their child to have a disability. What they want... what they need... is help for their lost child.

So, what is My Big Opinion?

Call it Autism. Call it Apraxia. Call it Sensory Processing Disorder. Hell, call it the Snowman Syndrome for all I care. But recognize that all of this really does mean something for that 1 in 100 family, regardless of what you call it. Regardless of whether these children are being correctly diagnosed, mislabeled, or are the mark of some new, scary epidemic, we cannot and must not poo-poo these rates. These rates DO mean something. They mean that for one family in one hundred, life will never be the same and they will face struggles that other families will not. It means that their child... whatever the reason... is struggling with something that impacts their ability to learn, ability to form relationships, and ability to interact with their world. For all of our fine categories and fancy diagnosic labels, let's not forget to keep our eye what is really important.

Alphabet Soup

Confession: I am an NPR junkie.

I am not sure when I went from cool hipster listening to the newest, coolest, obscure alt rock bands to cruising around in my Saturn VUE (the ultimate "non-SUV" soccer-mom-mobile) listening to such riveting programs such as The Splendid Table, Speaking of Faith, Car Talk, Marketplace Money, BBC Worldnews, This American Life, and so on. But so it is... I am a NPR junkie/intellectual elitist. What can I say?

Anyhoo. I was listening to NPR the other day and they were doing a program on OCD (obessive compulsive disorder). Now, I fell into this show at the tail end, and so I missed a large percentage of this discussion. And, to be honest, I was only half listening to the rest as I was driving J-man to yet another appointment. Nevertheless, my interest was peaked when a listener called in and asked the Expert Psychologist about her son who has autism. She stated that she had been trying for many years to get the doctors to add an OCD diagnosis as well, but was meeting resistance and wondered if the Expert Psychologist could comment. Now, of course, because I was only half listening I missed the first part of her answer... but my ears tuned into this part (which I am completely paraphrasing. Never have I wished for Radio DVR more. Expert Psychologist, please forgive my swiss-cheese memory, but I hope I recalled the spirit of your statement):

"... parents end up with a child who has what I like to call Alphabet Soup: PDD, OCD, ADHD, LD... all in the same child. But instead of looking at these as four different diagnoses or disorders, we should instead focus on this as one nervous system that functions in a particular way. And the individual problems in each diagnosis are actually a part of a whole neurological picture... where each set of behaviors no doubt influences other elements of functioning."

One brain. One nervous system. Not 4 or 5 different disorders. One brain that functions in a specific way, in a way that creates specific set of 'problems'. And those problems are not always neat and tidy in the way we "label" them. So, in order to attempt to capture the essence of this nervous system, doctors and educators rely on this Alphabet Soup approach. Of course, Alphabet Soup doesn't work. It doesn't work because these nervous systems are actually people, each which is unique and individual in its presentation of the particular challenges. But instead of crafting a carefully articulated story of specific challenges that one child may have, we get diagnostic codes and shortcuts and assumptions.

Which is why children have parents. And why we, as parents, must force ourselves to become absolute experts on our child. I cannot abdicate my role as the J-man's voice. We are coming up on his Big Evaluation and IEP planning for when he turns three, and I need to gear up and get ready.

.

I have been told that the Big Evaluation is merely to qualify him for services. Essentially, the school district needs to know that he is delayed, and delayed enough to qualify for service. They will ask us questions about his development. They will test him on standardized tests measuring speech, language, sensory issues, and cognitive development (which I have a HUGE problem with, but that is for another post). They will add up numbers and 'quantify' the J-man. And they will, no doubt whatsoever, qualify him for the special education.

.

Our school district has a designated evaluation team that does all the evals for special education. The reasoning behind having a designated team is a good one... you have experts in evaluation, who know how to administer the tests, and who do so in a somewhat systematic way. That way, all children who are tested are tested with essentially the same people, the same way. The hope is that by doing it this way, the results can be seen as reliable and valid. That his scores compare to other kids who have the same experience.

.

Except...

.

... what does that actually tell us? That... when dealing with complete strangers in an artificial setting, the J-man can or can't do X, Y, and Z? That... with no supports whatsoever, my language delayed, crappy auditory processing, socially delayed and possibly autistic TWO AND A HALF YEAR OLD can or can't do X, Y, and Z?

.

I guess if the goal is to to see if he will qualify for service, this format is a goldmine. However, if you actually want to see what he CAN do, and do well, this is not the way to do it. How will they really be able to know who he is and what he really needs? Can this team of complete strangers assess the root of his processing difficulties, his motor planning issues, and social needs, and come up with a valuable plan that addresses those issues in a meaningful way? Shouldn't THAT be the point of the Big Evaluation?

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So, I shall be putting on my game face and going in...