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

Special Occasions: Who's Expectation is it, Anyway?

I've mentioned before about the difficulty with holidays and special occasions where our son Nolan is concerned.  He wears the label of “classic autism”, if one can even be described as such.  There are times when he is the “stimmy”, “routine-y”, “bouncy”, “no-eye-contact” template of the definition.  Other days, he won’t stop hugging us or stop talking (granted, the “talking” is generally a constant repeat of a three-line section from a SpongeBob episode, which I guess would be back to the routine and stimming).  But, rarely does he get excited in anticipation of anything other than returning home to fire up the iPad.

His sister Madison dons a PDD-NOS diagnosis (which she will relinquish when the bright, shiny, new DSM-V hits newsstands), and on a good day would easily be mistaken for one of her neurotypical peers.  Tell her there’s a birthday coming up (hers or a friend’s), or that Santa is even weeks away, and she glows with anticipation.

When any big day is upon us, Mad is as excited as a Chihuahua is to a doorbell.  She salivates at the thought of a new doll, an art set, a picture drawn in crayon.  To her, opening gifts is an event to be savored.  And no matter what is inside, no matter how trivial it may appear to an outsider, to Madison, it is keys to Cinderella’s castle.

Nolan, on the other hand, remains stoic and resolute.  No, sir --- no silly gifts will loosen his resolve to stay glued to whichever electronic device we forgot to put away the night before.  It isn't in him to get excited about what’s inside the red, green, uninteresting paper.  Oh, he has little problem responding in one way or another to the product inside, but unlike Mad, his reaction is never what a parent expects or wishes for their child.

This Christmas wasn't much different, though it was better (for us) than holidays in the past.  He was a little more excited; slightly more animated when he opened his gifts.  It could have been the electronic nature of them, or he could have genuinely been energized.  Either way, his eyes seemed to shine a little brighter (if that could even be possible), and his smile was more genuine.

I don’t know if it really matters either way.  I mean, to us as parents, we want him to be happy, and excited, and to look forward to his birthday.  But if he doesn't get that way, is that on him, or on us?  What if he’s satisfied with whatever emotion he is feeling?  He doesn't have any idea he is missing out on anything…because, to him, he isn't.

The rest of the year, the word “normal” frustrates us to aggravation or tears, depending on the situation.  Yet, when a special event rolls around, our hearts are broken that our kiddos don’t have a “normal” reaction to the occasion.

Sometimes it isn't our kids who have the difficulty. 

~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

Autism: The things some people say, Part III

Yesterday, EPEC, my Rutland, VT autism support group had the good fortune of being able to set up a booth at a local community health fair. It was a really good time and we had a great turnout.

Well, it was a good time for most of us.

To read more, swing by the EPEC autism support group blog to read the article, or click here.

~Jon

Autism Awareness: Define "normal"

We're three weeks away from Autism Awareness Month and World Autism Awareness Day. There's a push for folks to wear blue on April 2, and buildings from the Empire State Building to the Sydney Opera House will be bathed in an azure wash. There's even a call to add a cobalt hue to the White House. Here in my home town of Rutland, Vermont we will again be hosting "Celebrate the Spectrum", a full month of community-based events and activities centered around autism awareness.

Hopefully, there will be something to show for all of this awareness advocacy. The question is: will it ever be more than blue shirts, awareness ribbons, support walks and sound bytes? I hope so. But, when there isn't a month supporting my son and those like him, other questions abound.

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  My son walks normally, not with a limp. Why would he warrant a "handicapped" tag?
  



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  He looks just like any other normal kid on the playground. Why doesn't he play kickball with the other boys?
  


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  He doesn't come into the restaurant in a wheelchair. Why can't he just sit normally like his two quiet sisters?



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  Every other normal person in the room is whispering amongst themselves. So, why does he have to sing and hum so loudly, and keep beating his hands on the wall?
  


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  Why can't we just let go of his hand like any other normal kid?
  


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  He just looks so ... normal.
  

There's the issue. Autistics (or those with autism, or however you choose to phrase it) don't look different than anyone else in the room. No curved spine. No wheelchair. No Cochlear Implant or hearing aid. No guide animal or white cane. Nothing to identify that they are facing what you and I would consider a challenge.

Once the ribbons have faded, the walks have wrapped, the donations have been tallied, and the light bulbs replaced with the color of the next support event, our loved ones living with autism will go back to looking normal. And, when they have a meltdown in the middle of Costco because the humming fluorescents and PA systems became too much, we will go back to being the parents who can't control "that unruly child".

Because memories fade, and human nature is in us all.

I guess that's just normal.

~Jon

Some December Tidbits from "Same Child, Different Day"

I just realized that this must have been a busy month. I haven't posted anything in almost 4 weeks which, no matter what has been going on, is a rarity for me! There has been much ado in both our autism and non-autism worlds, and I guess time just got away from me. I mean, holy cow! Can you believe another Christmas has come and gone? Here's where we were last year with this blog: Same Child, Different Day Content - I was still describing the chapters of the booklet and was only on the 4th post! This is the 45th post, and so many people say they have been helped by both this blog and the booklet "Same Child, Different Day: One family's experiences during the first year after a child's autism diagnosis": Review, Reader Critiques, Global Reach, Radio Interview.

I wish I could write more often; I should write more often. But I can only do what I can do. As I have done once before (and am sure I will do again), here are a few tidbits from the past few weeks, both related and unrelated to our autism work --- because it all relates, doesn't it?

• Our new business is forming nicely! I'm just waiting for the VT tax department to get back with me on a couple questions, and I need to finish designing one form on my end. I have a meeting with BROC Micro-business --- a free, community-based service in our city which helps new entrepreneurs --- on January 7. If this all works out (and it has to), in the end it will mean much more time to spend with the family. God knows, Lori could use the help! How do you manage work and therapies?
• Speaking of Lori, she'll be starting college in the summer. She'll attend the Community College of Vermont and is looking to concentrate on Pediatric Physical Therapy. Has dealing with autism inspired you in any way?
• I published an article on Associated Content in opposition to our state Medicaid department making the unilateral decision to reduce Nolan's coverage. Since our local papers wouldn't print it, I took it online. One reader was prolific in her comments, and feels that my opposition is counter to the best interests of Nolan. I tried to explain the crux of the article regards the state agency making an unqualified reduction. The commenter implied that, regardless of the entity making the decision, we are using our therapists as a crutch. Please slide over to the article and post your comments. I value your opinions.
• We wrote a 4-page letter to the state, requesting they reconsider the above decision. Surprisingly, a week later they wrote back that they had, and his services are once-again covered to an acceptable level. Tell us if you have ever had to battle with state agencies.
• Then, we found out from our private insurance company that they (the insurance company) should not have been covering Nolan's services based on his diagnosis. So, to make an already-frustrating situation even worse, I'll have to battle with them, along with my illiterate state legislature that doesn't believe autism should be covered by insurance. Does your state require insurance companies to cover autism therapy services?
• (Downer Alert!) We found Christmas to be tough this year. As far as I'm concerned, Christmas in our house is about the kids. Lori and I like to give each other gifts, too. But as long as the kids get taken care of, and are excited Christmas morning, our job is done. Well this year we were looking for a great reaction from Nolan, based on some of the strides he has recently made. We'd hoped, anyhow. Instead, while his sisters eagerly tore open gifts and screeched happily, Nolan paced the house, covering his ears and making noises akin to Taz of Looney Tunes fame. He did play for hours with one of the toys we bought for him (an inflatable ball pit with a tower and "ball" waterfall), but somehow, it just wasn't the same. My good friend Deanna, who is always the most wonderful voice of support, encouraged on Twitter, "you may have a long way to go, but remember the journey is worth it. Sometimes hard to do, I know...". You can say that again, Deanna! Tell us about times the frustrastration that can be associated with autism has affected your family and how you have coped.

~Jon

Now Monitoring Comments on Same Child, Different Day

Good Evening, Loyal readers.

I want to apologize to all of you that I must now moderate the comments you post. I recently received a post from someone who was less than respectful to all of you. While I believe that thought provoking, challenging debates are healthy for our community, I do not have to tolderate abusive language or belittling comments. To those of you who share differing opinions in a respectful and fair manner, thanks for that and please continue to do so. You make us all the better for it.

That said, please click here to return to our current discussion, or here if you are new to Same Child, Different Day and want to start at the beginning.

Thanks and have a nice evening.

~Jon

Florida "Teacher" Suspended for Autism Vote Reinstated

OMG! What are they thinking? Recently Wendy Portillo, a kindergarten teacher from Port St. Lucie, Florida, decided to put to a vote from her students, whether or not an autistic child should be allowed to stay in the classroom. The kids voted 14-2 against the child, and the teacher was later suspended from the classroom.

Good first step, right? Yeah, well...

...seems the school board has decided to REINSTATE this dummy and relocate her to sixth grade. Yeah, that'll help.

This stupidhead is still being allowed to teach because she has tenure, and doesn't see the error of her ways. And the school board was freaking unanimous in their decision to let her back on board. Can you believe it?

So, you have a six year old kid in your class who is disruptive of the other kids, and you ask them to vote on whether or not the child should be allowed to stay in. No parental involvement. You don't ask the school clinician. The principal isn't brought on board. You just arbitrarily ask your students to make the decision. I'm sorry but, who is this moron?

If the kid was a distraction because of his clothing, or wheelchair, or burn scars, or speech impediment, or --- God forbid --- skin color, would this teacher have committed the same moronic decision? Hard to say, since it happened once with this child. But I guess worse than her choice was the choice of the school board to --- again I say --- unanimously decide that, sure, she's a great teacher and should be allowed to traipse back into a classroom and be allowed to wield her judgemental opinions on any child that happens through the door.

All this after a judge upheld her loss of tenure! Woe unto any child who doesn't fit this anus' mold (if you can't tell, she's pissed me off). And "teacher"? What is it that she teaches her students? Intolerance? Judgement? Discrimination? Stupidity? The voting process?

Please link this story, post about it, make it known, Tweet and Retweet it...Email (you can get a list of departments by clicking here) or phone the Port St. Lucie school board (772-340-7100 by the way).

Please sound off...let me know what you think! And I'll link your stories back here if you post them, k?

Thanks for indulging me.

~Jon

Same Child, Different Day: So much more than words

I've changed up the sub-title of this blog a little bit. Initially, this blog was only going to be about the booklet: maybe I could give some good, helpful info, and possibly earn a little gas money along the way. But so much has been happening with this online forum, that I have to change at least a portion of the title so it better reflects the mission and purpose of the posts.

The main title however will never change, if for no other reason than --- frankly --- it's too darn clever to mess with. After all, doesn't the title reflect what we go through on a daily basis? Each and every day, Jimmy, Nolan, Chris, Max, Tony, Alex, Raymond, Hunter, Keera and all the others too numerous to mention are exactly the same child they have ever been; that they will ever be.

But one day --- whether it was bright and sunny, there was the prediction of a flood, it was a Tuesday, you had just come from a birthday party or had just gotten out of bed --- somehow you happened into the clinic that diagnosed yours. The doctor(s) may have been old, adorable, a friendly short lady, a doc on his way to retirement or a team of over-priced professionals. No matter --- whether you were shocked or prepared, whomever they were slapped you square on the cheek with a palm-full of gut-wrenching news, and left you with a "what are you gonna do about it" welt on your face.

All of a sudden everything was different. The sun wasn't as bright as before, the tears fell like rain, you couldn't recall what day of the week it was, the happy memories of the party had all but vanished and you just wanted to climb back into bed. The day was different.

Though it may have been happening gradually for a few months, the days now began to show signs of change more quickly. There was no more predictability; something had happened and now you couldn't use the same toys to stop the heart-squeezing cries. As different as each day became, so it too became ritual: you now had to take the same route to daycare every day or put every piece of clothing on your child in the same, mind-numbing order time and again. This, too, was different.

But there was something that hadn't changed; hasn't changed. That kid was still the same one whose temperature you took when they were sick, the same one who you couldn't wait to smell after a bath, the exact same one who captured your heart as the nurse laid their swaddled body across your chest. This is the exact same child that they ever were, and that they are ever destined to be.

That last statement is not said in the vein of desperation. On the contrary; may it ease your frustration. While we should never give up on pushing our children's potential, at the same time, we should not expect overnight miracles. What we should expect are frequent regressions, a slow pace and insane, overly-emphatic reactions to the smallest leaps and tiniest bounds.

One day 4-year-old Nolan will wow us with his computer finesse or deliberate acts of affection. Then two days later at an outdoor party, we won't be able to socialize with friends because we have to guard against his constant ricocheting toward the street.

Who understands what I mean? Come on, show of hands? See, that's what I thought --- those with your hands up, live it; which is the only way to appreciate it.

So anyhow, that's why I can't change the main title of the blog.

~Jon

Celebrate the Spectrum Finale

Autism Awareness Month is behind us now; the conference speakers have packed up their projectors, the empty bottles have all been counted, volunteers have all gone home and we get to take a little break for a couple months. But all in all our Celebrate the Spectrum was a wonderful success; we look so forward to next year.

And Same Child, Different Day took the spotlight the final evening. But what was to mostly be a night of me reading from the booklet turned into a wonderful sharing session. Heidi spoke at length about her son Eli, and the pictures she provided were a wondeful touch. Jen shared a poem she wrote which made everyone cry. My Mom shared a newspaper article with a very positive outlook. Mike gave an anecdote that was also quite inspiring. And several others joined in the converation as well.

That's what it's about, after all: the sharing and support we all give each other as loved ones experiencing the same "different" days. Sure, all our kids are at different places on the spectrum. Some of us embrace the public and can't wait to enlighten others. Then there are those families however, who have decided that home is the best place to stay; and maybe these events didn't change that way of thinking at all. We're hopeful that they did, but if not, our number one goal was to show you that we're in this together.

No two ASD kids are alike, and it's those differences that bring us together. If all we showed our new friends is that they have someone to turn to, then the entire month was worth it.

Either way, see you next April!

~ Jon

Same Child, Different Day: The Unknown

Autism is an unknown. My good friend Heidi, whom I've mentioned before, has a great saying: "If you've seen one child with autism...you've seen --- one child with autism". No two are alike, yet its the differences that join them.

The chapter of Same Child, Different Day: One family's experiences during the first year after a child's autism diagnosis entitled "The Unknown" is similar to "Bedtime" in that it's a short by informative chapter. It talks about those differences and many more: like what causes our son's meltdowns, won't be what causes your child's. Yet, it's those meltdowns that make them so similar.

And the cause of autism is yet to be proven; which makes it difficult to find the right mix of therapies that will work for you and yours. But what works for you, though it will differ from us and the rest of the world, will be what works for you. It's as simple as that.

There's the connection: It's all these differences that bind us. And that's what this chapter tries to share.

If you'd like to read more of Same Child, Different Day, you can buy a copy (or several for your organization). Just click the PayPal link in the sidebar.

~ Jon