"Reinventing Christmas" vs. "A Norman Rockwell Christmas"

The holidays make me want to scream too, kid.

Ah...the holidays.  A time of joy, decorations, friends and family, and of course, food.  You can just see it - a Norman Rockwell print with the whole family around a perfectly prepared bird.

Is this the scene in our house?  Not so much.

Holidays are a time of rescheduling therapies (bad), not having therapies (worse), and changing schedules (worst).  There is sensory overload in the form of lights, smells, sounds, people, and other holiday paraphernalia.  If I wasn't going into Jack's speech therapy session today, I might would have taken a nap in the car.

Here is a list of the things you might see in a Rockwell house vs. the Reinventing house:

Rockwell:  Children sitting around a fire, drinking cocoa, and enjoying their family.
Reinventing:  No fire, because we haven't had the chimney cleaned in years and good luck trying to keep Jack away from something as bright (and dangerous) as an open flame.  Instead, Jack is pacing in front of the fireplace.  Good times.

Rockwell:  The family carves the beautifully carved bird at the table.
Reinventing:  The parents carve the beautifully reheated frozen pizza and pour glasses of two-buck Chuck after putting Jack to bed.  We then collapse on the couch and fall asleep watching House.

Rockwell:  The kids bask in the glow of the Christmas tree.
Reinventing:  Jack stims in the glow of the Christmas tree.

Rockwell:  Children's eyes are aglow at the sight of Santa Claus.
Reinventing:  Jack runs and screams at the sight of Santa Claus.

Rockwell:  The family rejoices and wishes that the holidays would never end.
Reinventing:  I count down the days until therapists get back in town and our lives get back to our definition of "normal".

Rockwell:  The family says "Grace" before eating their feast.
Reinventing:  We wrestle Jack into his booster seat while he screams and flails.  He runs off to stim.  We wolf down our food as quickly as possible so that one of us will be free to stop him from opening and closing the cabinet doors at my in-laws' house.

The good times never end.  What kinds of things might one encounter at your house that are a departure from the traditional?

The "Bully" at the Pool

On the heels of yesterday's post about bullying, I'll share Jack's first real experience with a "bully" or a "$#!%-head kid", depending upon whom you ask.  You see, if you ask Brian, he'll say the kid's a bully.  In my opinion, it's difficult for a preschooler to be a true "bully", since they don't have any real concept of putting people down.  They just may be little @$$holes.

At the same time that Jack has aquatic PT each week, there is another therapist who holds adaptive swim lessons.  These are swim lessons for kids who many not be 100% in terms of motor skills, but who don't quite need the rigors of an actual therapy.

There is a 3 or 4-year old little boy, "H", who has his swim lesson at the same time as Jack's therapy session.  He's an observant kid and he's learned one thing - he can make Jack stim and scream.  When he gets to the pool about halfway through Jack's session, this kid will start scanning the pool looking for Jack.

Now, does "H" identify what Jack's doing as stimming?  No.  He just knows he's getting a reaction from Jack, and it's one that he finds pretty darned funny.  He'll squeal out when he passes Jack and wait for Jack to scream or start to flap his hands or shake his head.  Yes, even at the tender age of 3 - 4, this kid observes that Jack's reactions are a little off, a little unexpected from the norm, and, with his preschooler sense of humor, friggin' hilarious.

Now, I honestly wish the kid would cut it out.  After all, Jack's screaming and stimming because something bothers him.  It may not be the usual "that-bothers-me" kind of reaction, but it's his and I identify it as such.  To their credit, the kid's mom and swim instructor tell him to leave Jack alone when they catch him in the act.

As for me?  I guess I just don't feel like it's my place.  More than likely, this won't be the first child who will torment Jack a bit.  Also, while it doesn't make it okay, Jack doesn't really realize what is going on.  He's just reacting to a stimulus that, to him, is very disturbing.

Brian, on the other hand, would probably give the kid's mother an earful.  That would be after he dunked the kid to teach him a lesson.  Brian's mentioned to me that he thinks I should do something about it.  I just think that neither kid knows that this is wrong, so it's probably just best to not make a big deal about it.  I guess that's the Papa Bear in Brian, and I can respect that.  Now, if it is an older kid or adult that says something derogatory to Jack, watch out, because here I come.

What would you do?  Would you say something to the other kid's parents?  Or, would you just let it slide?

It Gets Better

This is not a post about special needs, but it might as well be.  Instead, it's a post about something that affects people of all races, genders, socioeconomic classes, and abilities.  I'm talking about bullying.

A couple of Fridays ago, I heard a disturbing story on the Today Show about a 10-year old little girl in Indiana who committed suicide after being bullied over the course of a couple of years.  In the school's (and the little girl's parents') defense, no one expected that the outcome of off all of this would be a 10-year old taking her own life.  It's not something that I, as a parent, would expect a child of that age to consider, but she did.

This discussion needs to be had.

I was bullied as a child.  The earliest instance I recall being bullied was by a girl in my Girl Scout troop.  I was in the 3rd grade.  She made fun of everything I said.  I still remember that.  She wouldn't let me hang out in her tent with my friends, because I wasn't "cool" enough.  I was segregated to my tent.

When I was in the 5th grade, girls started to form cliques.  By default, I was placed in the not-so-cool clique.  I was in the gifted program.  Of course, the other kids saw it as a way that I was different.  I'm all for inclusion for kids who are in various educational programs, such as being in the gifted program or having an IEP.  However, inclusion, at times, creates more difficulties for the child than we are fully aware.

By the 6th grade, the bullying really began.  To make matters worse, we were assigned seats by alphabetical order for lunchtime.  I sat next to two people - H and J - who made my life miserable.  I was called, among other things (and I hope this doesn't offend anyone - these weren't my words) "TAG (the name of the gifted program) Fag", numerous plays on my first name, and nerd.  I got this every day at lunch, but I didn't say anything because I knew that saying something would just make it worse.

The thing that H and J weren't aware of, because I didn't want anyone to know, was that my parents were going through a divorce.  My Dad, who was my hero and who supported all of my nerdiness, because indeed I was a nerd, was no longer living under the same roof as me.  My Mom was starting to see her old high school boyfriend.

My life was a mess.  School was my refuge, and I did seek refuge by throwing myself into academics, so much so that I qualified to take all gifted classes the next year, something that only 12 other people in my grade got to do.  Lunches, bus rides, and homeroom were horrible.  I got picked on day after day.  I felt like I had no friends.  My best friend, a girl who lived down the street, wasn't in any of my classes.  I felt utterly alone.

My 7th grade year was better, as I spent the vast majority of my day in gifted classes.  In my 8th grade year, there was a girl in my homeroom who was what I could best describe as "kindly cruel".  I had a huge crush on one boy in my classes.  This girl, C, would tell me that he was way out of my league and  he would never like a girl like me.  By that point, I'd been told as much so often that I believed her.  I just didn't want to even try to make friends anymore.

When I was in high school, we moved almost every year.  I went to 3 different high schools before we moved back to the place where I'd have to see those same peers every day.  Luckily, the maturity level of some had increased ever so slightly, but where I used to get bullied, I was now ignored.  In fact, I sat behind one very popular guy in my Statistics class who eventually attended the same college that I did.  I wasn't Miss Popularity in college, but I had quite a few friends and was known by a bunch of people though the leadership program I did.  That guy from Statistics suddenly acted like he knew who I was, and I was polite every time I saw him, but it bothered me that someone who acted like I didn't exist in high school suddenly wanted to talk to me because the tables had turned.

So, I was bullied.  I was different.  I was geeky.  I liked dinosaurs the way Jack likes letters and I could recite just about any dinosaur fact you wanted to know.  I had to teach myself social skills after a very long period of time.  I had to figure out for myself that people didn't want to always hear about dinosaurs.  I had to figure out (and it wasn't until college that I did) that people expected me to look them in the eye.  It was just too uncomfortable for me (and it still is), so I never did it until then.  I walked on my toes.  I had to learn that there were certain expectations.

But...it got better.  I can honestly say that I embrace who I am now.  I'm a nerd.  Big deal.  It's kind of cool to be a nerd.  I understand, perhaps even better now that I have a child on the spectrum, that there are different ways that people act not because they're just a "nerd", but because there is a biological reason.  Awkwardness, like I so painfully demonstrated, isn't something to be poked fun at, but something to assist and help a person overcome and to celebrate the triumphs.

My heart breaks for the people who lose children to bullying.  If I could speak to even one child out there, I would say that it gets better.  Stick it out.  When you grow up, you'll find your place.  You'll find a place where people respect who you are.  You'll grow comfortable in your own skin.

Until then, keep your chin up.  It's just words, and while words can hurt, they will destroy you only if you let them.

So, don't let them.

Black Friday

By the time you read this, I will have already been awake...shopping.

Yes, it's that magical time of year we all know as Black Friday.  A day in which retailers metaphorical ledgers edge into the black and every begins the excessive spending known as the Holiday Season.  Gingerbread Lattes flow.  Christmas music, with the occasional Hanukkah song or rendition of Feliz Navidad, blares from department store sound systems.

Most notably, moms who have spent the whole previous day cooking, cleaning, and putting up with family are set forth at an unnatural hour of the morning to beat each other up, if necessary, in pursuit of this year's "it" toy.

If there is one thing that is nice about having a child who still plays with infant toys, if at all (the fabric/magnetic letters are the "it" thing right now), it is that I needn't venture into the fray for toys.  However, this year, I'm on the hunt for a particular electronics item - a BluRay player.

Our DVD player in our living room is on life support right now.  It takes multiple times of loading DVDs, blowing on them (because we all know that solves all problems, like when we used to blow on the inside of Nintendo cartridges), and keeping fingers crossed in order to get a movie to load.  As Brian says that DVDs are on the way out and BluRay is on the way in, we resolved to not buy another DVD player and go with the newer technology.

Which means I'm hungry like the wolf...for electronics.

The last time electronics were on my Black Friday list, I got rammed by an angry Wal-Mart shopper who was in pursuit of what I wanted...and I was pregnant!  Imagine what might happen to me this year!  I'm the person who gets mowed over at the grocery store on a weekly basis.  My natural cloak of invisibility clearly leaves me susceptible to the crazed Wal-Mart shopper that is looking to scoop up 5 BluRay players and put them all on layaway.

My other concern about this year's trip is the time.  This year, every store is opening at midnight.  That's a full 5 hours earlier than some of those stores opened the year before!  Wal-Mart and Toys R' Us are opening for Black Friday at 10 PM Thanksgiving Day.  After all, Black "Friday" is just a metaphor for "Thursday".

I pity the people who work retail and end up having to go into work on Thanksgiving Day, because you know they do.

I'll be ready for you this year, shoppers.  I'm bringing my mother-in-law with me.  She's got Black Friday skills that put us all to shame.

Give Thanks

Not unlike last year, I feel need to give thanks to the many blessings in my life.  One for each today leading up to, and including, today.  A very Happy Thanksgiving to you and yours.  May life's blessings be far more abundant than not.

1. I am thankful for the most wonderful husband I could ever imagine, Brian.  While I wish he didn't feel some of the pain that this journey entails, I could not do it without him.  We first started dating 12 years ago, and I'll never regret that decision.
2. I am thankful that I have family that supports Jack and, to the best of their ability, attempts to understand him and his needs.  This journey would be much more difficult if I was always fighting a battle with my family on top of fighting a battle with autism, and I am one of the fortunate ones who does not have to do so.
3. I am thankful that I have a wonderful house.  Sure, I complain about various things from time to time (don't we all), but the fact of the matter is that I live in a much nicer house than most people do.  I should give thanks for that alone.
4. I am thankful that Brian has a job that provides for us all.  It is important to remember things such as this in a time when so many cannot say the same.
5. I am thankful that we have an abundance (as evidenced by my waistline) of food to keep our bellies full and to give us the joy and pleasure that good food, accompanied by good company, can bring.  There are many in this world who do not have just this basic necessity, and I am privileged to be among the lucky ones who do.
6. I am thankful to have been granted the opportunity at an education that left me both knowledgeable (despite what some might think) and with a thirst for knowledge.  May I never feel quenched of that thirst.  Many are not given the opportunity at an education such as the one I had, and I must not forget how powerful of a gift education truly is.
7. I am thankful to have my Dad, and his family - my family, back in my life.  Never meant to replace anyone, having my Dad and family back makes my life more whole.  More complete.  I have a family, a big family with room for all in my heart.  I am fortunate to have so many people in my life who love me, when not all children can say the same.
8. I am thankful to live in a time where the possibilities for children with autism - both for their futures and present treatment - are limitless.  I am fortunate that Jack was born in a time where the recommendation upon his diagnosis was not institutionalization, but a program of therapy and education to help him become as independent and live with as much self-determination as is possible for him.
9. I am thankful for the many doctors and specialists who use their expertise, experience, and medical knowledge to help give us answers for Jack's various issues and to give us treatment options to improve his quality of life.  While many issues have pointed back to his autism as the cause, I'm thankful that our medical team always searches for anything they can do from a medical perspective to help Jack live a better life.
10. I am thankful for the many therapists Jack sees each week to help him progress on his developmental path.  These amazing women use their knowledge, with compassion and heart, to treat my little boy day after day.  I am so thankful that these women devote their lives to helping children with disabilities and delays gain the skills to help them live lives with more independence and normalcy.
11. I am thankful for the many friends who have stuck around after Jack's diagnosis.  Not all did, but the ones who did are precious to me.  For as busy and hectic as my life gets, those occasional "How are you doing?" emails and messages keep me connected to a life that I used to live.  They always bring a smile to my face at the thought that someone is thinking of me.
12. I am thankful for the new friends I have made since Jack's diagnosis.  The community of women I have met, the ones who simply get what it's like parenting a child with a disability, have been my lifeline.  It's difficult to understand the ups and downs of my life, so the women who do make me feel validated and like I am not alone.  They give me strength in numbers.
13. I am thankful for my sweet little dog, Mason.  A warm bundle of fur at my feet, Mason is always there to rest his little head on my lap as if to say, "I'm here with you."  Sometimes, that's exactly what I need.  His patience with Jack is remarkable.  It's as though he just "gets" that Jack is special and that he needs to watch after Jack and protect him.  He's soon to turn 13 years old, and I pray that I have many more years with him at my feet.
14. I am thankful that, for the time-being, we have the resources to provide for Jack's medical and therapeutic needs.  Our circumstances may change as time goes on, but I am thankful that, for now, we're doing just fine.
15. I am thankful for my grandparents.  They have watched over me through the years and always tried to step in when they felt that I needed someone.  They filled voids that existed.  When Jack was diagnosed, unlike many people their age, they not only acknowledged that they knew something was wrong, but that we were all going to fight for Jack as a family.  I'll never be able to fully express my gratitude to them for all that they've done for me.
16. I am thankful for my in-laws.  While that may not make the lists of many people, I am blessed to have a fantastic set of in-laws.  They live much closer than any members of my family and are always willing to lend a helping hand.  Whether it is babysitting Jack, helping me manage him at a specialist's appointment, or getting information regarding school options, they are there to advocate and care for Jack just as passionately as I do.  That is truly something to be thankful for.
17. I am thankful for my health.  Over the years I have remained very healthy, with the exception of a bout of pneumonia earlier this year.  I am aware that I need to remain healthy in order to meet Jack's needs and I am fortunate that my health has never been a concern.
18. I am thankful to be living in a country in which there are freedoms afforded not only to me, but to people and children like Jack who are some of society's most vulnerable.  It is truly a blessing to have freedom, equality, and opportunity for all, regardless of race, gender, or disability.
19. I am thankful for the men and women, like my brother-in-law, who serve our country in the armed forces or public service professions.  It is because of people such as them that we are able to have the freedoms and rights that we enjoy.
20. I am thankful for technology that exists not only to help us all connect with our world in a way never before possible, but that also helps special needs children like Jack learn and grow.  Technology has opened a realm of possibilities for our children that never existed before, and we are fortunate to live at a time when we can use it.
21. I am thankful for Jack's health.  While Jack has had some medical issues here and there, I am so fortunate that the major issues in Jack's life - his autism, dysphagia, speech and motor issues - are not something worse.  Even though he will never be "cured" of autism, I would gladly take on autism any day as opposed to taking on a diagnosis that could take my child's life.  I pray that we, or any other family, never have to face such a reality.
22. I am thankful that we live in a good area, with good schools, and that we have access in our area to programs that will help Jack grow.  Not everyone has the advantage of good schools with good special needs programs, nor does everyone live in an area with resources to help treat their child's disability.
23. I am thankful that even on my darkest of days, I am usually able to find something to smile about.  May I never lose that ability.
24. Last, but certainly not least, I am thankful for Jack.  He has taught me so much about myself.  When I never thought I could be a stay-at-home Mom, he had feeding issues that forced my hand to make that decision and showed me that I could do it.  While I thought that I did not have it in me to parent a child with special needs, he has a myriad of special needs and has shown me that I do indeed have the strength to fight for him.  He has taught me to appreciate the littlest things, because those accomplishments aren't little feats for him to achieve.  He has taught me just how much joy I can get from one smile or one glance, because I don't get them as often.  While I have more challenges parenting Jack than I ever expected, I feel more joy in his accomplishments and I have an appreciation for those little joys.  Even if Jack weren't to progress a day further in his development, he will always be perfect in my eyes.  There wouldn't be a thing that I would change, because if Jack were different, I wouldn't have the same child.  He has, and will continue, I'm certain, to teach me more than I've ever learned before about love, acceptance, and myself.  I'm blessed to have him as my child.

Enjoy your day of turkey, dressing, all the fixins', and, of course, family.  May you feel just as blessed today and every day.

I Know What You Were Doing Last Year...

Thanksgiving Wednesday, 2010.  I'm sitting in my pajamas on the stoop in my garage, my head pressed against the door listening.  For what, I'm not sure, but I feel the need to listen.

This is a story I didn't share last year, because in the hustle and bustle of the holiday I neglected to post about it.  Perhaps, it was a bit out of embarrassment as well, but at least I can laugh about it now.

You see, the reason I was sitting on the stoop in my garage is because Jack had locked me out of the house.

I was spending the day before Turkey Day doing what I do every year, preparing casseroles and desserts. The house was likely filled with the intoxicating aroma of pies, sweet potatoes, and French fried onions.  Like so many, I was plowing through cans of green beans, pumpkin, and other holiday fare with a ferociousness that would have intimidated even the Tasmanian Devil.  Also, being the avid recycler that I am, I was making frequent trips out to the garage to put cans into the recycling bin.

During this time, Jack was playing in the living room.  As is usual with him (though at this point we were still unaware that this was unusual for typical kids and that he was autistic), he was playing all alone and really hadn't noticed that I was in the kitchen.  I had the gate to the kitchen closed, but was watching Jack over the gates.

Our baby gate leading to the kitchen is located directly next to the garage door.  It had never occurred to me to unlock the door, because I always simply left it open when I ducked briefly into the garage.  Of course, Jack with his "quirks" and "need for order", as we called it back then, noticed that I left the door open.  He does not like open doors.  So, when I ducked out into the garage at one point, I heard the sickening sound of the door slam closed behind me.

It didn't occur to me at first what had happened.  I was just shocked that Jack was able to reach through the gate to close the door.  However, when I turned the handle and nothing happened, I felt a wave of fear.

Oh crap.

Bear in mind, we had been extremely lazy that morning.  I was standing in my garage in sweatpants, a t-shirt, a robe, and slippers.  I surveyed my options.  Of course, I hadn't left any door unlocked.  That would be irresponsible, right?  I realized that it was time to meet the neighbors.

Suddenly, I was happy that it was the Wednesday before Thanksgiving, because it meant that the likelihood of a neighbor being home at 11 AM in the middle of the week was exponentially higher.  I knew what I needed...a phone.  I headed for the house across the street with cars in the driveway.  Cars surely meant that the drivers were home, right?

I imagine I looked a sight ringing the doorbell with hair piled in a ponytail on top of my head and my sloth-like clothing.

"Hi, I live across the street.  My toddler locked me out of my house, can I use your phone to call someone to bring me a key?"

Luckily, I must not have looked like a vagrant, because my neighbor gladly offered his phone and any other assistance I might need to get back in my house.  Luckier still, my in-laws, who live 5 minutes away, were both home and promised to head right over with a key.

Thanking my neighbor for not judging me as being too crazy, I headed home to sit on the stoop in the garage and wait.  I was waiting, hoping, that I wouldn't hear some noise that would be indicative of anything bad occurring, like the sound of a mini-explosion or demolition derby in my living room.  I listened for sounds of distress from Jack, but the good thing (if there can be one) about his lack of awareness of my presence was exactly that - he felt no distress in my absence.

After what seemed like an hour, but was in actuality only about 10 minutes, my mother-in-law showed up, key in hand.  I opened the door to a scene not unlike the one I left.  Jack was safely confined in the living room, rolling his trains back and forth in front of his face.  In fact, he didn't notice that I had returned either.  He was oblivious to the whole episode and the fact that I was recovering from a mini-panic attack.

In hindsight, I can laugh and see the errors and irony in this whole scenario.  You can bet that I absolutely will keep that door unlocked when going into the garage this Thanksgiving.  I have no plans on making the same mistake twice.

The Elf on the Shelf

This time last year, I was contemplating "adopting" an Elf.  You know, an "Elf on the Shelf".

Basically, you "adopt" an Elf, name it (because naming the elf gives him his magic), and place it in your home.  Between Thanksgiving and Christmas, the Elf watches over the family during the day and at night zips back (or teleports, if you're a Trekkie) to the North Pole to report to Santa on the family's activities, good and bad.  Hence, this is how Santa knows if you've been naughty or nice.  When he returns, he hides, so the kiddos have to search the house to find out where the Elf is that day.

Last year, there were no Elves to be had.

This year, I've seen them in several places, but we've had a different question.  Jack doesn't get holidays.  He doesn't understand Christmas.  Heck, he doesn't understand birthdays.  He doesn't understand the concept of getting presents.  If I ask him to find anything that isn't his "glug glug" (his cup), he generally cannot or will not (depending on how you see it) look for it.  If his "glug glug" is not within sight, he won't even do that.  So, asking him to find an Elf may be asking too much.

Also, Jack doesn't quite care for stuffed animals, baby dolls, or any similar objects.  He won't even touch the ones he has.  It's like they carry plague.  So, the likelihood that he'd be motivated to search for the Elf, even if he could understand what we were asking and comply, would be slim.

But still, as a parent I can't help but selfishly want to partake in traditions that other families get to do.  One of my biggest fears is that Jack won't understand what Christmas and the holidays really are until it's too late for him to really enjoy it.  That he won't get the magic of Santa until he's too old for it.

Is that selfish for me to want to do this with my child, even if he doesn't want it or understand it?

We're still seeing Santa this year, but at a local ABA school that does Santa sessions that are modified for children on the spectrum.  No more mall for us.  Even that may be asking too much, but there's a part of me that feels like we have to do it.  We need some normalcy.  The holidays need to feel right for me and Brian.

Because for me, they don't.  Not this year.

I have no idea what to get my child who only wants to stare at magnetic letters.  I have no idea how to share this holiday with him.  I'd hoped he'd be able to enjoy my famous roasted turkey.  I thought he'd be able to help make cookies.  He's approaching 3 years old and I thought we'd be there by now, but we're not.

I'm going to have to figure out how to modify the holidays for Jack so as not to overwhelm him, but so that we still get the feeling of celebrating the holidays.  I need to find a middle ground that works for the 3 of us.

That may be simply being there with him where he is right now.

The Elf may have to be shelved this year...

The Obsession

Jack has his letters.  Brian has baseball and history.  I'm just an overall geek, but the one thing I can't stop collecting is...

KEEPSAKE ORNAMENTS.

I've never understood why people go nuts for Beanie Babies or other collectibles, but these ornaments are like crack to me.  If I were so inclined to stim as Jack is, I'd be waving these in front of my face all day.

This years selection of Keepsake Ornaments is now online for viewing, so I greedily perused the pages in search of the ornaments that I would most covet this year.  Of course, I always like one that pertains to Jack, but in a way I'm glad that there aren't any Autism Speaks ornaments.  A "My 3rd Christmas" ornament caught my eye instead.

Many of the ornaments I love are ones that pertain to life around our household, which can be quirky, at best.  As you might imagine, the ornaments that catch my eye are an eclectic bunch, to say the least.

I'm not a normal Mom.  I'll readily admit that.  Last year, I got a baking ornament, so naturally I would want the next one in the series:

My love of A Christmas Story is the stuff that legends are made of.  If I could stim on a movie, this would be it.  In fact, some people might argue that I do, in fact, stim on this movie.  Thank goodness TBS plays it for 24 hours straight on Christmas Eve/Christmas Day.  Of course, that would mean that I would absolutely adore these:

And given that I'm the world's biggest cheese ball, I would find an immense amount of humor in this:

And to match the light up Griswold house from last year, I clearly need this:

Now, why do I get so into things that I can only see/display for a month out of the year?  I'm not sure, but I guess it has something to do with the memories.  There have been portions of my life in which my life has taken very drastic, abrupt turns and there is no going back.  Maybe, the memories bring me back to a different time, a simpler time, one in which there weren't as many worries on my plate and one in which I could just enjoy.

Clearly, I won't be buying every ornament I want.  With each ringing in around $12 - $20, I could spend a small fortune on ornaments, but instead I pick the few that I can't live without.  And I'll mow over any Grannies or cat ladies who stand in my way at Hallmark.

Triumph and the Meeting

Flash back to the beginning of October and Jack's 6-Month Review.  Jack's service coordinator knew that we had significant out-of-pocket costs for Jack's private therapies and the special instruction that, due to Babies Can't Wait's asinine rules, was now only paid for on a once monthly frequency.  She also knew that I had launched a letter-writing campaign to just about every person within BCW with any power, but to no avail.  She also knew that I had just turned in our application for a Katie Beckett Deeming Waiver, so I was looking for every funding source I could.

I think she knew that something wasn't right about this, either.

The state's early intervention agencies, under Part C of IDEA, are to provide early intervention and child-find services to identify and treat babies and toddlers with developmental delays and disabilities.  Why is this important?  Obviously, I'm biased, but the reason why YOU should care is because it costs a lot to provide public school special education services to children aged 3 - 21 under Part B of IDEA.  Paying for early intervention lessens the likelihood that children will require intensive services for many, many years to come.  So, early intervention saves money.  However, if you think past the fiscal aspects of it, early intervention provides something for our children that in decades past would not have been considered possible - a life in which our children can function with as much independence and self-determination as possible.

Not all states provide early intervention the same way.  Part C of IDEA is vague, so it's up to the states' interpretation as to how to provide services under Part C.  Some states provide extensive services, including therapies, developmental preschool, play groups, and parent training.  Others, like GA, provide less.

GA operates under a coaching and primary service provider model.  Essentially, what GA argues is that parents can be trained to provide therapies which professionals provide.  Also, they argue that having a primary service provider is the way to go, so you get one weekly therapy and all other therapies on a monthly basis.  It varies from county-to-county, I think, because I know people who live in other counties who get more services than we do, even though Jack needs the same services.  It's interesting, because no one debates that Jack needs ST, OT, PT, and SI, but the state says that it's only their responsibility to pay for one of them.

Herein lies the dilemma.  So, our service coordinator went out on a limb and suggested that I attend their upcoming team meeting.  She would put Jack on the agenda and I could directly petition for SI to be paid for at a weekly frequency.  Perhaps, it would be more difficult for them to turn down a pleading mother to her face.

Flash forward to a week ago.  I had not been able to sleep well the night before.  I pulled up to the building where the team meeting was to take place.  As I arrived, I immediately felt a knot in the pit of my stomach.  Why?  Because this was the building in which we first heard that Jack's delays were more than just social and communicative.  He had motor delays, self-help delays, and cognitive delays.  It was Jack's first developmental evaluation.  It was the first time I cried because of someone's assessment of my child.

So, I was trying hard not to throw up.

I had one weapon in my arsenal that day, and I pulled it out to help me focus.  It was a picture of Jack in my arms, his sweet little face looking up at the camera.  He was in the hospital in that picture, but it was the only picture I could put my hands on that morning.

Our service coordinator called me back.  The room was filled with far more people than I anticipated.  I was introduced.  As I scanned the room, the only faces I recognized were those of our service coordinator, our intake coordinator, and Jack's physical therapist.  The other 37 people were strangers.  I could definitely feel the chunks rising in my throat and the tears burning in the back of my eyes, but I held it together...for Jack.

I held Jack's picture up.  Every person in that room needed to see him not as a name, DOB, and diagnosis on a piece of paper, but as a child.

"This is my son Jack.  He is an amazing, precious little boy with PDD-NOS, hypotonia, dyspraxia, and dysphagia.  Currently, Jack gets private speech and OT, plus aquatic PT and special instruction through Babies Can't Wait.  When aquatic PT was added to Jack's therapy regimen, BCW cut Jack's SI frequency down to monthly.  I'm here today to ask you all to please increase Jack's frequency to weekly.

"He'll be entering the school system in March.  I'm told that with Jack's delays, he'll qualify for special needs pre-K.  However, for special needs pre-K to have a maximum benefit, Jack must be able to follow simple one-step commands and attend to an adult.  Special instruction helps him with that.

"Additionally, Jack does not follow danger signals.  He won't heed a warning to stop and has been known to run from caregivers.  Special instruction is helping him learn these danger signals and adhere to them.

"Jack needs weekly special instruction to equip him with skills to help him learn and keep him safe, particularly in the preschool environment in which I will no longer be at his side to protect him at every moment.  I'm asking you to please consider approving my request.  Thank you."

Several therapists threw questions out.  How was he doing in PT?  Luckily, Jack's PT answered and read his standardized test results to illustrate how delayed he was.  Was he receiving private ST and OT?  Yes, he is.  How much longer is he in the BCW program?  4 months.

Then, Jack's intake coordinator spoke up.  She saw no reason why they couldn't and shouldn't approve our request for full payment of Jack's SI.  The therapists and coordinators all nodded in agreement.  I'm sure that the smile on my face was very visible at that moment.  Jack's PT gave me a thumbs-up, and I said a final "Thank You" before leaving the room.  Jack's service coordinator already had the paperwork drawn up in hopes that it would be approved.  I signed it, and she headed back to the meeting to, in her words, "receive a likely reprimand".  I thanked her for going out on a limb for Jack and she said, "It's my job."

Yes, it is.  It's mine, too.  I left feeling powerful that I could do something to impact my son's treatment and give him a better shot at success.

I slept well that night.

Disengaged

My Facebook status on Tuesday afternoon:

Do you ever have a day where you just don't feel like you're doing enough? Where you feel like you're not good enough? It's one of those kind of days...maybe it's the weather...


I can say that the weather was crappy.  It was that kind of overcast where you're just waiting for the sky to open up and the rain to fall...but it just won't.  However, I don't think it is the weather.

See, for the past week or so, Jack has been really disengaged.  Not just disengaged-because-he's-autistic disengaged, but just-not-there-at-all disengaged.  Clearly, something's going on with him.  He stims on his letters for large amounts of time.  I'm hesitant to take the letters away because stimming is indicative of stress.  It's his way to "cope".  So, if I were to stop him from stimming, I would take away his only coping mechanism and I would not be addressing the root of the problem.  So, I've been playing sensory detective trying to figure out what is going on in my little guy's world that's making him so distant from me.

Floortime has been rough as a result.  Not on him, but on me.  The thing is, he's not even melting down.  I almost wish he would.  Melting down is a response.  Disengaging isn't.

I can tell you, Floortime isn't for the weak.  Spending two-hours a day trying so desperately to get your child to interact with you wears you down.  I mean it seriously wears you down.  When your child does not respond and retreats further into his own world, it really wears you down.  It is easy to feel very alone in a room with Jack.  The amount of effort I have to put in to get him to respond to me wears me down.  Especially when you feel like you absolutely have to get that interaction, like your child's future depends on it.

Hence the Facebook status from Tuesday.

When I hear good things about Jack at therapy, I'm very happy but I wonder, why do I have to work so hard to get that at home?  Now, I get that kids act different at home and at therapy.  I also get that therapists only have to work with your child for an hour a week, whereas parents do 14+ hours of Floortime weekly.  However, there are times that I don't think I'm cut out for this.  Times when I doubt if I have the power to affect real change in my child's social skills and behavior.  When I think that I don't have the energy to keep making my gestures bigger, myself more inviting, and my actions more enticing so as to woo him into interacting with me, if only for a few minutes.

The best way to describe it is like this.  Imagine you're in high school and you have a crush on a guy who is far more popular than you.  He is out of your league.  You smile in the hall and he doesn't notice.  You help him with his schoolwork in class, but he doesn't even know your name or acknowledge you.  You hopelessly follow him around trying to persuade him to look at you, talk to you, or even just recognize your presence.

This is what it's like living with Jack.  My life is filled with trying to convince him to notice me.  Except, unlike with a crush, there will not be another to take his place.  He is my child and will always occupy the biggest portion of my heart.  Boyfriends, crushes, even spouses (to some people - not me!) will come and go.  Children live in your heart forever.

The days when it gets to be too much, I have to take a step back.  I have to realize that this is something that I must get up and do again tomorrow.  After all of my attempts at getting him to notice me, I pick myself up, brush off the dirt, and pray that tomorrow is one of the better days where he smiles at me, talks to me, and lets me give him a hug.

And if it's not, I'll pray that the next, or the next, or the next, is that day.  I'll keep the cycle going, because he's the one I can't let get away.

Global Duggarnation

Yes, I haven't posted for a while.  I wish I could promise that I would, but autism doesn't work that way.  There have been good things and bad things over the past couple of weeks, all of which deserve their due.

For today, I felt the need to depart from the world of special needs into something that will (hopefully) give us all a little chuckle.  I'll admit that I am a morbidly curious watcher of some of TLC's shows that highlight departures from the nuclear family.  There's Sister Wives with it's polygamy, Kate Plus 8 with Kate's hair, and even a show called Long Island Medium about a psychic in New York that acts like a combo of Miss Cleo and Jersey Shore.  However, all of these shows could each be a post unto themselves.

Today, I refer to the recent news that the Duggar clan is adding to their brood with the anticipated arrival of baby #20.  

I have one child.  Granted, he has special needs, but one seems like more than enough work.  Twenty?  How are you not pulling your hair out, Michelle Duggar?  I know you have a billion built-in babysitters, but seriously?  God bless you, woman, because you're going to need it...

Now, in spite of the fact that the Duggars are single-handedly staging their own version of Occupy Arkansas, I actually have no problem with their increasingly large brood.

Why, may you ask?  Because they aren't hurting anyone.  Sure, they dress a bit off of the fashion norm, but so do I (not in a fundamentalist kind of way, though...just in that I could care less what is or is not "fashionable").  They live debt-free and raise all of their children to be...gasp!...responsible citizens that contribute to their community and serve others.  They don't take charity.  They're not on any public assistance.  If they want to have 50 children, and can raise them all well and provide for each one, then who cares if Michelle Duggar has been pregnant for basically all of her adult life?

Also, I am offended when people bring up the argument that the Duggars' youngest child, Josie, was born nearly 24 weeks premature due to preeclampsia.  I hear so often that the Duggars' shouldn't have more children because the next child could have problems.

Guess what?  I had preeclampsia!  It was my first pregnancy, no less!  The odds of you having preeclampsia may go up slightly if you've had it before, but Michelle Duggar's only previous bout of preeclampsia was with her second pregnancy.  I think she had plenty of reason to believe it would not be an issue with her last one.

As for the people that think that one child with medical problems means that you should close up reproductive shop, I have something to say to you.  I have a child with autism.  Does that mean that I shouldn't have more children?  Regardless of what I think, I have every right to have more children, sans judgment, if I so choose.  Even with a child with a developmental disability, the odds that my next child would be neurotypical are greater than the odds that he/she would be autistic.

It's one thing to criticize people who have child after child and live off of Uncle Sam's pocketbook, but it's another to pass judgement on people who have a lot of children, but do so responsibly.

Honestly, I'd rather Michelle Duggar have 30 more children (but I don't wish that on the poor woman!) than for some people I've met to have even one child.

What do you think?  Is 20 kids about 18 too many, or the more the merrier?

Jack Skellington

Jack the Skeleton.  Not to be confused with
Jack Skellington.  Darn it, why didn't I think of that
before now?

Author's Note:  So, I realize that I didn't post yesterday.  My apologies.  In my defense, we did have a schedule change (which went smoother than I anticipated...Jack obviously doesn't miss Gymboree) and I was in a food coma last night from Chicken Pot Pie.

---

Halloween.  It's a holiday that many kids love.  My husband informed me that Halloween, in his eyes as a kid, was second only to Christmas.  I had to disagree, but those of you who read last Friday's post know why.

I'm not totally sure Jack would agree, either.

Last Halloween, Jack was the ripe old age of 19 months.  We took him to 3 houses.  He did okay with that.  We didn't accept candy, but I remember distinctly thinking that surely by this time this year he could enjoy Halloween candy like every other kid.

Nope, but that's okay.  Fewer cavities, right?

Our goal for this Halloween was to be able to do at least the same number of houses as last year.  The houses we visit are those of my in-laws' neighbors, who all know about Jack and want to see him just for the squirmy ball of cuteness he is.  They don't care if he screams in their faces and they won't take it personally.  It was a goal that we thought was potentially achievable.

Some background on this year's Halloween.  Jack went as a skeleton because it was the only costume we could find that came in pajama form (see this post for why).  To top things off, Jack had a smidgen of a cold, but it really wasn't bad.  Just a runny, snotty nose and occasional coughing.

We prepared for what we knew would be an onslaught of sensory and social situations that Jack wouldn't be crazy about.  We brought Jack's wagon so that he could "ride" from house to house, thus sparing our backs and his legs (he'd get tired really fast that way).  We knew that we'd accept no candy (maybe next year!) and that this would again be more about the social exercise.

In that regard, at Jack's new special needs play group (post to come...I promise!), the social skills topic this week was about what is expected behavior when you Trick or Treat.  The leader had the kids knock on the wall and go through the exercise of saying "Trick or Treat", receiving candy, thanking the person, and saying "bye bye".  Since "bye bye" is one of Jack's favorite (and only) things he says consistently around here, that was only part he did.  He did it from afar, too, choosing to scream "bye bye" when it wasn't his turn.  We've gotta work on that.

So, off we headed to the first house.  The neighbors wanted to chat us up about Jack and his progress.  Jack did not say "Trick or Treat" or "thank you", but he repeatedly said "bye bye".  He handled himself well.  One house down!

Then, it was as if Jack suddenly became aware that this neighborhood is crawling with kids, and there were tons of them.  Not just kids, but kids dressed like all sorts of crazy.  His reaction when he saw his OT dressed in a very mild costume (cat ears, a tail, and minimal face paint) earlier in the day clued me in to the fact that he doesn't quite get costumes.  Suddenly, Jack was on edge.

Alas, we went to one more house.  This house was a much briefer visit.  Jack was suddenly done.  We thought we could maybe squeeze the last house in by putting Jack back in the wagon and rolling him around for a minute, but at that point vestibular input wasn't enough.  So, we called it a night before the meltdown got out-of-control.

Our total for the night?  1 1/2 (since we cut the visit short) houses.  So, we did less than the year before.

At speech yesterday, Jack's OT and one of the other (not Jack's) speech therapists asked about Jack's Trick or Treating experience.  I mentioned that it was much briefer than the year before, but that was okay.  We have more Halloweens to get it.  Then, the other ST said something that I didn't think of...she said that Jack's negative reaction could be seen as a good thing.  After all, the year before he probably had so little environmental awareness that he didn't notice the other kids or the craziness that was their costumes.  I know he noticed the noise, but she's right.  The fact that he noticed the other kids and it freaked him out that there were A) so many, and B) so many dressed like people other than kids, which is unexpected, is an awesome thing.  He's more aware of his environment and surroundings.  Things that would have been tuned out before occasionally get noticed now, or at least we assume so.  That's awesome progress.

We came home, beloved foam letters in hand and bag empty from getting no candy, though Jack's Grandma and Grandpa gave him a NY Giants shirt and a new Pez dispenser.  I'll take it as a win.