Matches for: “autism” …

Before May Flowers

April. Here in the States that means Autism Awareness Month. It is hoped, by those who organize such things, that a month like this will, well, grow awareness and concern about autism. Just in case you need a reminder I would like to state for the record:

I am aware of autism.

Our youngest son, Andrew, is on the spectrum. He was diagnosed in 2007 after many months (years?) of evaluation, observation, and assessment by those who know a lot about such things. He was four years old.  In the nearly five years since diagnosis I have had a few things to say about raising an on-the-spectrum child. Writing about him has helped me to process the journey and celebrate the being that he is. There have been moments of sorrow and moments of joy along the way. Indeed, there is angst; there is anxiety.  Also, there are questions; lots of questions. And, overall, there is growth and learning.  One thing that I am most certain I have learned along the way:

Autism is awareness.

One of the incredible things about the incredible boy I am raising is his heightened state of awareness of EVERYTHING that is happening around him. The experts say that, for those of us with neuro-typicality, our brains have an ability to filter noises and prioritize what we should focus upon as we listen, or interact, or engage with the world. Not so for the specially made brain with autism; rather, sounds and stimulation all come through at the same level of  volume, or speed, or overwhelm. It is much more difficult for a child with autism to distinguish noises and prioritize sounds to find focus.

Or, as Andrew says it: “I have very sensitive ears”.

And so he does, along with a very sensitive soul and an insatiable zest for life. Living with a this child on the spectrum is a daily lesson on noticing everything, the way he does. For Andrew, every, every moment in his day is a new adventure. Put him on a swing and he shouts at the top of his lungs with unmitigated joy. Offer him a new book to read (preferably about Power Rangers) and his whoops of delight are infectious. He tells jokes. He sings songs. He chatters incessantly. He hears everything. He is readily distracted by side sightings and wandering thoughts. When I forget to remember who he is (and sometimes I do) it can be frustrating, especially when attempting to make a departure from the house to reach school on time. But when I remember to be still and watch him, I am constantly fascinated by what fascinates him. His curiosity about the world is unending–he asks questions about how things work, why things happen the way they do, and what might happen next. He (like many children with autism) interprets things literally and it takes large effort on his part to open his mind to the idea that some things we say are not what they sound like.  Idioms are idiocy for a boy like this–after all, raindrops are made of water, NOT cats and dogs.

I have long said that Andrew walks at his own pace. Occasionally, that is at turbo speed (well. as fast as eight-and-a-half-year-old legs can run), but most often that is the sure and steady pace of the tortoise. He pushes along in his own time, always pressing forward in steady progress, but with a cadence that allows for him to pause, notice, investigate, and breathe it all in.  I am honored to be his companion for the journey.

My son has autism.

It makes me aware.

Please visit Cafe Press to order your Autism Awareness gear!

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Commune with me

My name is Jenn and I have a child with autism.  And while that doesn’t require a choral response as greeting: “Hi Jenn”, I mention it at the beginning as a point of reference for what will follow. Raising a child with autism grants me no license for specialness, especially in these years where the diagnosis of those on the spectrum is at an all time high. Nor does pasting that label onto my six-year-old son indicate a single thing that is better or worse, in relative terms, about him as a human being, or about parenting him. What it does offer, that word, is an opportunity to look at a variety of things that I hadn’t investigated before in raising neuro-typical children. When Ian  came along, there was already a magnificent stack of books in my house awaiting read through and referral as I learned the art of parenting. Emma’s arrival, two years after Ian,  also included an additional set of books and learning. It is lovely to have all that reference on the shelf  (and there is a magnitude of option available for parenting at all stages).  Maybe it’s altogether too much expert opinion, but all for all, it’s nice to have it around.

Andrew’s entrance into our lives required some dusting off of the old titles and the re-crack of book bindings as I attempted to recall the fine points of having an infant around once again. (It’s funny what you can forget.) Diligently, I turned pages and re-read passages, ultimately coming to the conclusion that these books on raising kids weren’t the books for raising this kid.  It would be years yet before I would have clear direction on exactly what to research and where to look for the expert opinion.  Andrew was nearly 4 years old when he was definitively diagnosed with Classic Autism Disorder. Up until that time I had the broad range parameters of  “delayed milestones”, “slow development”, “late talker”, “picky eater” as I conducted my deep (no kidding) google research on what could be going on with my son. I’ve done a lot of reading.  No, really A LOT of reading.  Along the way, I’ve been helped along by true experts in the field of child development.  It was with encouragement and support from  a dear friend who knows and works with children like Andrew that I aggressively pursued observation and achieved a diagnosis. Not that I was all that interested in a label for my son, quite the contrary is my actual attitude on that issue, but because in this world of words a standardized DIAGNOSIS means SERVICES. Without a WORD, there will be no funded support. Simple.

And so, we have a word.  A loaded word to be sure and its application to Andrew is singular. The same way its application to another child with the same diagnosis is unique to him/her and means something different to the family who supports them. Which is to say,  autism is a spectrum disorder–its symptoms and characteristics can present themselves in a wide variety of combinations, from mild to severe. Every case is unique. Every child is uniquely affected.  And if you know children at all, then this is an instinctive set of facts, it should come as no revelation or shock that we are unique and individual. Even when we belong to a category.

Our return to the USA has brought several challenges as we’ve settled  here in Missouri. One of the more vigorous tasks has been to set the wheels of a public school system in motion in regard to Andrew and his history. It is an intense process to identify your child on paper and grant leeway to professionals and educators to observe, document and assess him.  Add to our experience the interpretation of medical records, diagnoses, and educational records most of which required a literal translation from Dutch to English, and many for which long explanations were accepted as the difference in school systems was identified. Which is all to say that Andrew’s Kindergarten file is pushing phone book thickness.

But today, he has an IEP in place and in action for his Kindergarten year.  His Individualized Education Plan was brilliantly organized as his “team” designed goals in all aspects of his learning. I don’t know when I’ve ever been happier to sign a document.  As I sat with the (his) counselor, the (his) teachers, and the (his)speech and occupational therapists I was overwhelmed with the recognition that this was a group of individuals united in their effort and devotion to Drew.  He has a support network in place that we’ve heretofore never experienced. But the emotion is in the understanding that it’s not Andrew’s support network alone, it’s mine too. And Don’s. And Ian and Emma’s as well. I look at that extended benefit as cherry on top in this situation.  We’ve long been loved and supported by friends,  family, and friends who are our family. Now, we add to the mix the dedicated support of some folks who just may know what they’re talking about.

My name is Jenn. I have a child with autism.

And I have a village.

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On My Shoulder

En route to our new home in MO,  we made a stop in our old stateside desert home.  Specifically, the city of Phoenix, Arizona.  The desert sun was warm and welcoming and soothing for our travel-weary souls. Our desert dwelling friends were the same. As the jet lag settled, we breakfasted one morning with a family we’ve known for years, who’ve been gloriously good to us over all of those years, and pleasantly, it appears we haven’t worn out our welcome with them yet. A veritable feast of  “American” breakfast foods hit the spot in our tummies and the feast of reunion filled the spot in our hearts.

The morning included a first meet, at least for me–not having traveled “home” in nearly 3 years,  of the newest and youngest canine member of our friends’ loving clan. A lovely labrador mix (unknown breed) who was the instantaneous, total, absolute attraction for six-year old Andrew. I had never really seen Andrew respond to a dog the way he fell head over heels for Daphne. The two of them were instant friends and her temperament seemed so suitable to counter his firecracker energy it really caught my attention.

I have long been aware of the idea of companion animals for people with special needs.  In the field of autism research there is a rising awareness of the benefits of bringing an animal, specifically a dog, into the life of a person with autism. In fact, there is a significant rise in the business and marketing of  “companion dogs” for autism.   Several years ago, I witnessed first hand what those benefits can look like as I saw one of my students (on the spectrum) adopt and settle in with a dog as his companion. The changes in his behavior and habits were marked and all of us watched that transition with much fascination. Those were the years before I had an Andrew even. All to say that it wasn’t a foreign concept at all, but  the morning I watched Andrew and Daphne together,  there was a bit of a “lightbulb” moment for me as the notion of  dog as companion for my little man seemed to cast actual light and direct a path.

So, I’ve been looking for a dog.

There are caveats to this search, or a single one at least, because I am an allergy ridden lass.  Though I grew up in a virtual zoo, I haven’t been able to offer my children that same experience without trading me in for a better model mother whose eyes don’t run when a cat is in the room and who doesn’t sniffle after wrestling a dog. It’s been a literal crying shame.    Happily, with the advent of the “doodle” dogs, we’ve been able to entertain  thoughts of having a canine in the house.

My research led me specifically to the poodle and labrador retriever mixes. I just really like the way they look and I love the description of their temperament and personality.  One day, in midst of my google search for local breeders or homes of labradoodles I found a dog who seemed to be just the dog I was looking for. After an initial email exchange, I threw Andrew into the car one Sunday morning and the two of us ventured into parts unknown in rural Illinois to meet the labradoodle who potentially could be ours.

It was love at first sight.

angel and andrew

We had a lovely visit with the dog and with the woman who has loved her for 5 years.  She needs to come to a new home because of some slight health issues which make her no longer eligible to breed.  We agreed upon the adoption without any hesitation and only had to wait until “our” dog was cleared after her spaying surgery and then we could return to pick her up. It may have been the longest 2 weeks of waiting ever recorded.

Yesterday,  I made the long drive to fetch our baby.  She’s home now. All of us are thrilled, almost beyond measure to have her here.   Andrew says it best: “This is  our dog Angel, and she’s gonna live with us a long, long, loooooooooong time!”

Welcome home, girl.

angel