Madison's First Sleepover

Even though we have two kids on the spectrum, I don’t talk much about Nolan’s older sister Madison.  Mad (she doesn't care for “Maddie”) was diagnosed with PDD-NOS 2½ years ago, and, while we had our suspicions for some time before, she wasn't diagnosed until she was 6½.  Even though she has autism, honestly, sometimes it’s easy to miss.  Mad is smart, talkative, loving, makes eye contact, does well in school and is relatively independent.

But there are a couple places where her uniqueness shines through.  First of all, she has a nearly eidetic memory, and catches details of a situation at a quick glance.  Yet, while she can recall the weather and exactly what she was wearing on the day we bought our pet mice last year, to get her to remember the morning routine she has been doing for years or focus long enough to find a bright pink piece of paper on an otherwise empty dining room table, and all hope is lost.

Then, there are Madison’s social skills.  I’ll start by saying that Mad is in love with everyone.  In her eyes, there is not an ugly person on this planet, and everyone loves her back.  Why wouldn't they?  To her, all people are perfect and she considers every soul she meets to be a friend.  From our big, gruff, bearded typical Vermont neighbor next door to my boss she met one time in the grocery store, Madison loves all people.

But, to get her to understand the complexities and nuances of childhood relationships, to realize that not everyone wants to hear about her family all the time, or to make her realize kids can have more than one friend at a time, is a full time job.  She has “friends” at school, but not by the same definition we used as kids.  Don’t get me wrong; she knows when someone is being mean to her and there are some she does not like at all.  But we accept that Mad may likely never have a BFF.

Nevertheless, Madison had her first sleepover this past weekend.  We have known “V” and her family for a couple of years now.  We invite them to game days, and we have watched each other’s kids from time to time.  V and Mad are in the same class, and she is the closest thing to a best friend that our daughter has.  V knows that Madison is quirky and can get annoyed sometimes at her chattiness.  Even though they get along well together, I was leery about the event.

That was a pointless worry.  Madison and V had a great time together.  Sure, Madison chatted V’s ears off and had a tendency to get upset at the unfairness of losing a Wii game.  But, when I caught my little kid leading the play activities and had V following her every direction without argument, my apprehension melted away.  Her friend showed up at about 4:30 Saturday, and was still in our house 24 hours later, never once begging for us to rescue her or asking for amnesty.

We worry that she’ll never have long lasting relationships with kids her age.  If the past weekend was any indication, Madison doesn't seem too worried about it.

~Jon

Myth: Individuals with Autism are a Danger to Society

There is a misconception --- likely fomented by the media and a susceptible public --- that children with autism spectrum disorders are somehow dangerous, or begin to exhibit dangerous behaviors, as they get older.  While this may hold true for some individuals living with autism, the same can be said for any neurotypical person.

In fact, with early and intense intervention, symptoms of children on the spectrum tend to improve rather than worsen.  While autism can never be cured, and a child certainly doesn’t grow out of it, with proper treatment, individuals can learn ways to cope with their condition.  Many, in fact, go on to lead successful, productive lives.

It is very rare to find a person with autism who is outwardly violent or who purposefully commits acts of hatred.  When someone on the spectrum is involved in aggressive incidents, they are usually instigated by frustration, sensory overload, and physical excess or similar stimuli.  Of course, as with anyone, there are exceptions to this, and other medical, mental, or behavioral factors may be evident as well.

If you’ve had other experiences or have anything you would like to add, please comment below.  I encourage thoughtful, stimulating conversation, regardless of your viewpoint.

~Jon

Autism: A Family Affair

I don’t mention it much here; heck, I’ve gone back through my posts and don’t see that I’ve ever mentioned it once.  Nolan isn’t our only one on the spectrum.  His older sister Madison was diagnosed a little over a year ago when she was almost seven.  I don’t think to ever mention her autism for a few reasons.

First of all, she is lucky to even be alive.  She was scheduled to be born January 29, 2004 (today would be her 8^th birthday), but she couldn’t wait.  She came to us instead in November, 2003 – three months early at 27 weeks plus five days.  She was 14 inches long, and tipped the scales at a meager 2 pounds four ounces (sugar is heavier, but not nearly as sweet).  For her first two years we were fully focused on keeping her alive.

Since then, aside from some minor medical concerns and a demure size that belies her energy level, she’s progressed at a fairly steady rate.  She’s scarily intelligent and (as far as the rest of the World knows) is the happiest of all Earth’s creatures.  But, there have been things that caused us to worry about her.

She hand flaps like she’s trying to take off; she has trouble with the appropriateness of some of her conversations; Mad is friends with other kids, but gets lost when she’s pressed to understand social cues; she repeats, repeats, repeats; she can’t recall the “morning drill” on her own from day to day; she is literally distracted by shiny things (woe unto the mirror hanging on our bathroom door)…and the list goes on.

A couple years ago, we had her tested by the same folks who ran the series on Nolan.  While Mad’s level of autism barely mirrors her brother’s, we never doubted our concerns.  Not that we want even one on the spectrum, let alone two.  Nevertheless, her diagnosis has helped us out when it came time to get her some therapies she has since benefitted from.

Still, it’s tough from day to day to think that she is even autistic (or has autism or whatever you prefer to read).  But, she has been diagnosed and she is.  I don’t know why I felt the need to bring that up, other than today is January 29 and it got me thinking…

~Jon

Jenny McCarthy...again!

Jenny McCarthy. Jenny McCarthy. Jenny McCarthy. I'm guilty to admit that if I keep hearing the name Jenny McCarthy every time a news or Hollywood outlet mentions autism, I'm going to have a melt-down of my own.

I promised when I started this blog, that it would only be about Same Child, Different Day and anything that promotes, supports or supplements it. And I swore to myself I this wouldn't be a rant blog. I've had bad luck with that in the past so let's just say, I'll try to make this the only one of it's kind.

Jenny McCarthy has a son with autism; granted and my prayers to her. And she's found what she believes is a treatment that seems to have cured him, in her eyes; hallelujah and praise God. If it's true, nothing aside from the same happening to my own child would make me happier. But, for all the reporting outlets to have dubbed her the end-all and know-all when it comes to autism is finally getting to me. She purports herself to be a self-appointed autism advocate for parents, but I don't recall asking her to be my self-righteous martyr.

First and foremost, there are countless fantastic families and individuals who have done as much if not more where the diagnosis has touched them. But you don't hear about them because, unlike Ms. McCarty, they don't have piles of cash, unlimited free time or the benefit of celebrity to thrust them into the limelight. On the contrary: many have given up jobs and homes, to move in with family and devote all their time and money into caring for their child, because their state, insurance company or community won't or simply can't help them otherwise.

Also, Ms. McCarty has found apparent success with her son's particular issues. However, as my good friend Heidi is fond of saying: if you've seen one kid with autism, you've seen one kid with autism. What works for Jenny McCarty didn't work in our specific situation, and it may or may not work for you. But the celebrity community-at-large has embraced Jenny, and have chosen to utilize her as a resource for all things autism. That's an unhealthy route to take, when you consider she does have a specific agenda she's pushing, and knowing that not all of those affected by autism share the same beliefs.

Yet, Jenny McCarthy is called upon time and time again to answer every question that could be asked regarding autism. I'm not claiming that any other person would be better versed on the subject, especially not a school-trained stranger not living the autism maze. But there are other families experiencing this condition, parents who don't hold a narrow-minded focus or agenda. It's the way of our society: popularity is the biggest factor we use in determining the most qualified authority. Just once I'd like to see the news media call on a regular family with a typical laundry list of daily tasks, a reasonable income and no axe to grind.

Anyhow, I said I wouldn't rant, and I don't want to get all irrational and thoughtless. And I surely don't want to invalidate the struggle I'm sure Jenny goes through on a daily basis. No matter the degree, autism is a challenging, life-changing diagnosis. I just wish society had chosen a more appropriate representative.

~ Jon

Help for a Recent Autism Diagnosis

We live in central Vermont, in an area that's easily an hour away in any direction from the nearest Interstate highway. Our small state is only pierced by two of these international thruways and, unlike many of our neighbors, rest stops are few and far between. As a matter of fact, on these limited access highways, there are only a couple of manned information points and to miss one can literally mean you've missed them all.

There are information booths in most of our picturesque our towns, and many businesses support racks of free giveaway guides. But sometimes you have to travel miles off the beaten path to find the kiosks or get good directions. And sadly, Vermont probably coined the phrase "You cain't get they'uh from hea'yuh". More sadly: while you're looking to find where you're going, you can miss a lot of the beauty that's right beside you.

What does that have to do with anything? Well, it's true that this blog is about our autism booklet Same Child, Different Day. But I also want you to know that we are available to you as a resource. For those just hearing that your little one has autism can be utterly overwhelming. We want to be your Welcome Center rest stop on this mapless, sign-free highway.

You have hundreds of questions, and hundreds of places to look for answers. There's such an overload, you may even find that you need to pull over to the side of the road and cry. But if you pull in right now and ask for directions, we can give you the insight of a family living the difference. Slip off the information superhighway and send us an email (jongilbert@rocketmail.com); we'll answer your questions --- and if you'd prefer to talk as opposed to electronic words, we can make arrangements for that.

We don't want you to feel that this is the end of the beginning, or the beginning of the end. You are at the beginning of the beginning: the Welcome Center. The autism journey is a crooked road rife with hair-pin curves, dead ends, forks, cliffs, hills and valleys. Hardest of all, most of us don't even know exacly where we're going.

Let us know if you'd like to carpool.

~Jon

Welcome to Same Child, Different Day

Same Child, Different Day: One family's experiences during the first year after a child's autism diagnosis is a 50-page booklet that was written by the father and family of a child with autism.

The title refers to the essence of the experience: Though your life and lifestyle will be an ever-changing journey, nothing about your child is any different, simply because of an autism diagnosis. The manual is meant to provide some insight into what you might experience during this first confusing year. It in no way shows what will definitely happen to your family or your child or suggest what you are bound to experience; but it does share with you some of what we encountered. Of course, your results will vary.

In Same Child, Different Day you'll find:
[] Casual, entertaining (and sometimes even humorous) anecdotes
[] Practical information from parents dealing with autism every day
[] Useful concepts and terms you are likely to encounter
[] Encouraging suggestions to help you get through each day
[] A starter list of useful references you should find helpful
[] And much more

If you're part of a group or organization serving families of autistic childern --- or you simply have more questions about this informative booklet, please send an email to: jongilbert@rocketmail.com for answers, pricing and bulk ordering information.