Evolution

Today I thought about how much things have changed and yet how much they have stayed the same……in some regards.

I remember when Michael was about 4 months old and I had to go back to work.  We left him with a wonderful lady who watched 4 to 5 other children in her home – one of them was her own child.  Mike dropped Michael off in the morning and the kids were so excited when he got there, since he was the only small infant.  “Put Michael down!  Put Michael down!” they’d shout to Mike.  I remember racing out of work to get to him in the afternoon.   His caretaker had a huge window in front of the house where the play area was for the kids.  So many times, Michael would catch site of me coming up the walk and start scooting over to the door, so excited to see mommy.  I remember scooping him up and squeezing him – it was like the world just vanished away – it was just me and my sweet baby.  His caretaker was such a sweet, warm lady who took such good care of him.  To this day we talk about how blessed we were to find her and how much she loved Michael, just as if he was her own child.

Another thing I remember about Michael’s baby days is the attention he’d get everywhere we went.  I remember people stopping to stare at him in his little pumpkin suit when we brought him to Target for his first Halloween photo.  Once, a lady in Publix saw me pushing him in the cart and commented on what a happy baby he was, and that we must have a lot of love in our home.  At a church craft fair, an Italian lady stopped to tell us how beautiful he was and told us to tie a red ribbon to his stroller to avoid the “malocchio” (the Sicilian evil-eye) because he was so sweet.

I still have very strong emotions when I pick him up in the afternoon………..but now they are feelings of anxiety.  What did he do today?  When I pick him up, will he be running around the school office with his aftercare assistant running after him?  Will his aftercare assistant roll her eyes at me and tell me how difficult his afternoon was?  Will he run into the ESE specialist’s office warranting an unhappy reprimand from her (again)?

People still stop and stare at Michael………but not really for the reasons they used to.  Little kids often stop and stare at him when he begins vocalizing in a grocery store.  Customers get alarmed when the lights in a small retail store suddenly shut off because he couldn’t resist flipping the switch on the wall.  Cashiers look at him strange when he doesn’t answer their friendly questions like “Are you ready for Halloween?  What are you going to be?”

Don’t get me wrong, I know there are plenty of people who love Michael just as much as we do.  His teachers in elementary school and his new ones in middle school know how sweet he is and how much he really does try.  He loves to be with his family – all his family – grandparents, cousins, uncles, aunts, and even close friends who have become like family.

But on a day to day basis, reactions to Michael can be disheartening.

Mike and I know how difficult Michael’s behavior can be.  We live with it day in and day out and we will likely do so for the rest of our lives.  We also realize that no one can understand Michael the way that we can.  But what would be nice would be for others to just get a glimpse – a REAL look – at what happens to our hearts when people even hint that Michael is a burden on them.  Autism or not, he is our child.  We love him and we want nothing more than for him to be happy and safe.  If we could wave a magic wand and change some of these challenging behaviors, we would.  But we can’t.  When others have to encounter him for a brief period of time, it’s not changing their lives all that much in the grand scheme of things.  They will go back to their lives and their business.  But when someone acts as though Michael is a burden – even when it’s just for a few minutes – it is heartbreaking.  Little by little, with every sigh, every eye roll, and every stare – it’s one more little jab that adds to the sadness that autism often brings to families.  And that IS life changing.

But as I’ve said many times, there are so many people who have come into our lives because of Michael that I wouldn’t trade for the world.  And to those teachers, therapists, and amazing friends, I say “thank you”.  You have touched my life and Michael’s in more ways that you will ever know.

A Captive Audience

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This year, I am teaching three subjects – math, religion, and science.  I actually love teaching math.  When I was in fifth grade, I made A’s in math.  It came pretty easily to me and I find it easy to teach.  Teaching about my faith is also pretty easy – it’s been a part of my life for 42 years.  I don’t like science.  I never liked it in school, and I don’t love teaching it now.  I think every teacher finds one subject that is their Achilles’ heel, and science is it for me.

But today was different.

My class is learning about body systems.  Today’s topic was the nervous system and last night’s homework was for the students to research a disorder or disease that affects it.  They were given a commercially made handout that listed cerebral palsy, epilepsy, multiple sclerosis, Alzheimer’s’ disease, and a few others.  We did an activity where the kids shared their information with one another, and then I happened upon a video on one of the websites I use with my kiddos.  It was about autism.

Now, a few years back, I taught first grade at my school, so this happens to be round 2 for me with half of these fifth graders this year.  I seem to remember possibly mentioning Michael’s “special challenges” to them when they were all 6 and 7, but I doubt it really made any sense to them at the time.

But today was different.

Frankly, the little animated video I found on Brainpop (the website I love to use for science) was kind of lame.  It was very minimal and I didn’t feel like it gave the kids any information at all.  However, the second I mentioned that my son was afflicted with the disorder, something changed.  Hands started shooting up.  They asked question after question about Michael.  Stories were being told about neighbors, cousins, and friends who had autism.  It was like something actually became real to these kids.  They suddenly really, truly heard me.   They talked about kids they knew who couldn’t talk about anything except dinosaurs; children they knew from camp who wore headphones all day and never wanted to play; kids in their neighborhood who flapped their hands all the time.   It was like it all made sense now.  They giggled when I shared stories about Michael and his obsession with ceiling fans.  They excitedly suggested to me to take him to Home Depot and Lowe’s (two places he loves).   When they asked if Michael plays any sports, I shared with them the special program in which he participates in running and soccer.  When I told them that typical kids are volunteers in this program, some of them asked me if they were old enough to participate and be a buddy.   We actually ran out of time for some of the things that I had planned this afternoon, but I just couldn’t bring myself to end this particular “science lesson”.

Michael has a fan club.  I hope he gets to meet these kids one day soon.  They really touched my heart today.

My cup runneth over

Oldest & Only (but not quite)

So those of you who are affiliated at all with the school where I work will recognize the title of my post right away.  The school where I work sends home what we call “Thursday Folders” once a week.  The office gives us stacks of flyers and notices with little sticky notes attached to the top.  The sticky note either says “All” or “O/O”; “All” means to distribute one to every child, and “O/O” means “Oldest and Only”, so those papers only to go the oldest child in a particular family or the only child the family has in the school (it’s basically a way to save paper).  Christopher is on the latter of the list and it seems so strange as he is neither an oldest child, nor an only child.  But, truly, in this family, he definitely knows both of those roles very well.

I often look at Christopher and think about the position he has in our family.  When I was growing up, I had 3 younger siblings. We used to sit down on the weekends with my parents and play board games.  When my father brought home our first video game, Intellivision, we fought over who was going to get the next turn (and God forbid you smile or laugh when someone lost a “life” on Astrosmash – that warranted an immediate hit of the reset button and then you had to wait even longer).  When my parents took all of us on vacation, they had to always get two adjoining rooms – kids in one room, adults in the other – and of course, the four kids in the room alone were not going to be getting too much sleep.  It was too much fun for the four of us to be acting silly and staying up as late as possible.  I’m sure all of this sounds quite typical of families with more than one child (even if it’s not four kids).  But in our family, the sibling dynamic is very, VERY different.

Our boys are 18 months apart.  Yes, we planned it that way.  We wanted our kids to be close; to be friends; to be in the same schools at the same time; to be able to share a room.  Well, we eventually got that last one.  The others, not quite the way we  imagined.  

The boys are close, but in a different way.  Christopher has really assumed the role of the big brother.  And I think that’s sometimes confusing for him because he’s the younger brother chronologically.  But Christopher has something that many other kids don’t have.  I don’t even know if there’s a word for it.  He’s not afraid of kids like Michael; he doesn’t have to be taught tolerance.  He doesn’t know any different.  I think often about kids who were born into families with dogs or other pets.  They don’t know a life without a pet.  No, I’m  not comparing Michael to a dog – please don’t misunderstand.  What I’m saying is that Christopher has never known a life without autism in it.  In so many ways, that has made him an amazing boy.  He has empathy and sensitivity.  He has knowledge and understanding beyond his years.  He’s learned to care for another person in ways most 9-year-olds don’t.  He helps Michael take a shower; he sometimes knows what Michael is trying to say when Mike and I do not.  He always takes an extra Starburst from the aftercare lady on Fridays for his brother.

And yet…..

I cry sometimes for the fact that he doesn’t know what it’s like to have a sibling like the siblings I have.  My heart breaks when he spends 2 weeks playing with his cousins in the summer, and then they have to leave.  I feel bad when Mike and I have to scold him for butting into our conversations.  I hate seeing him constantly in front of a “screen” because he has nothing else to do.  

Christopher has a lot of really nice friends.  Unfortunately, most of them don’t live close by (that’s one of the things about going to Catholic school – the kids come from all over).  I do try to schedule lots of time for him to spend with his friends.  But there are times when we want to just have family time.  It’s hard to strike that balance.  

On the other side of the coin, Michael absolutely, positively LOVES Christopher.  If Christopher is not with me when I pick up Michael from school, the first thing he says when he notices is “Go get Christopher”.  If Chris is at a playdate or a birthday party for a few hours, Michael will repeat “Christopher’s coming” – almost like he’s reminding himself, that Christopher will be back soon.  Christopher is a huge part of Michael’s life.   And I know how much Christopher loves Michael.  I see it in the hugs he gives him before he leaves for school.  I hear it in the comments he makes when he sees a Mickey Mouse toy at Target – “Michael would really like that”.  

Mike and I have “that talk” every so often – what would happen to our kids if, God forbid, neither of us was around?  Where will Michael live when we can’t take care of him anymore?  On more than one occasion, Christopher has piped up “I’M going to take care of him; he will live with me.”   

Yes, our family dynamic is very different.  But the family love remains the same.

Impact

I had a hard time coming up with what to name today’s post.  I haven’t blogged in about 6 months but finally was hit with enough inspiration to return.

This morning, Michael crawled into bed with me and Mike at about 8:30.  Not bad for a weekend.  As he lay there between us, cuddling, I looked at him, and as every special needs parent probably does once in a while, wondered how our life would be different if he was not afflicted by his disorder.  What would his friends be like?  What sports would he play? What interests would he have?  But as fast as I started to think about those things, I dismissed them.  Autism has made impacts in my life that I wouldn’t change for anything.

I’ve met people I couldn’t imagine living without now – people who have brought so many things to my life:  friendship, love, laughter, and inspiration.  I’ve seen Michael bring out kindness, compassion, and joy in the lives of people.  I’ve been able to help other people who are just starting to navigate the waters of autism.

I also realized, that I’ve become a better teacher because of Michael.  I have often said that parents of children with special needs should be given an honorary degree in Exceptional Education.  I have learned so many things on this journey and realized that some of the things that help Michael, and other kids with challenges, can help all kids.  One of the incentives I offer in my class for outstanding behavior and citizenship, is sitting on a therapy ball for the day instead of a chair.  Let me tell you that my students will pick that “bouncy ball” as a reward over “free homework” passes, extra computer time, candy – you name it.  And the change I’ve seen in some of these kids JUST SITTING ON A BOUNCY BALL is unbelievable.  I’ve learned so much about the brain and sensory input that I can actually notice when a kid needs something like this.  I had a little girl in class the other day who at one point literally was fidgeting from her fingers to her feet.  That very afternoon, I got a copy of a local free magazine “The Autism Notebook” that had an article about how just 5 – 10 minutes on a therapy ball can help a child focus for 2 hours.  The very next day I pulled my little friend aside, and explained to her that I was going to let her sit on one  of these to see if it made her feel different.  WHAT A DIFFERENCE.  Would I have known about this if it were not for Michael?  No way.    I have another little friend this year who is having a horrible time with organizing his books.  Each time he goes to my co-teacher for the subjects she teaches, he invariably comes back to my classroom 3 – 4 times because he forgot something.  This week, I plan to implement a visual schedule with him.  Michael’s been using these in his self-contained room for years.  Again – something I’d have no clue about were it not for Michael’s teachers working with us.  Now, I have no delusions that I am going to change the life of all of my students, but some of these tiny little tricks can make a difference.

Michael started middle school this year.  It’s still unreal to me that he’s reached this point.  When I’m driving to pick him up, I see many of the students walking home.  They’re so BIG!   Is my little chubby cheeked peanut really old enough to be in the same school as these giants walking down the sidewalk texting and talking on their phones?    One of the things I really do like about his school is the fact that the special needs’ teachers include life skills as part of their program.  They’re going to work on cooking, doing laundry, etc.  (They actually have a washer/dryer in a room attached to the classrooms!) This is going to be interesting.   I have actually witnessed Michael get inside our washing machine and sit in there.  At least it’s been some time since he’s done that.  However, yesterday morning, Mike and I awoke to find the oven turned on (thankfully, it was only turned on the “clean” setting which won’t turn on unless the oven’s been locked) and he had taken half a bag of tater tots and dumped them onto a baking sheet which was sitting on the range top.  We should have had a good idea he was doing something like this – we sleep with our door ajar, and at about 8 AM, Michael came on over and closed our bedroom door.  In the words of Mike, he was likely thinking “I’m about to do something so bad, I’ll just go ahead and shut this door”.  Well, at least we got the message, and Michael got to have tater tots for breakfast.

Finally, I have to give a “shout-out” to my former teaching partner-in-crime, Mrs. Judge.  We taught first grade together for four years before I took my teaching hiatus in 2003 to stay home with my kids.  I was so excited to run into her at a diocese-wide conference right before school started.  Her words were “I don’t care what you are pinning on Pinterest or where you’re eating dinner – I WANT TO READ THAT BLOG”.    Thanks, Mrs. Judge!  I promise, I’ll keep up on the writing!

More Cowbell by Mike Enlow, Guest Blogger

 

ImageOnce you become a parent, your life takes on new meaning. You want to make sure that you’re always there for your child, to take care of them, provide for them, and tuck them in at night. You want to be there for all the important occasions, their graduation, their wedding day, you want to meet your grandchildren.  When you’re the parent of a special needs child though, you also have a completely different set of concerns. Who’s going to get out of bed when they’re half asleep just to make sure (again) that all the doors are locked and all the keys hidden away? Who’s going to use a “death grip” while holding his hand in a parking lot to ensure that he doesn’t run away? Who’s going to chase him at night in the rain as he bolts off down the street? Who will keep him safe from all the dangers that he doesn’t understand?

It’s not just my son’s safety that worries me either. Living with a special needs child is not always easy. In the last two weeks alone we’ve had a bed wetting on the new couch, new blinds pulled completely down, and trails of crumbs that would make Hansel and Gretel envious. He’s the embodiment of “this is why we can’t have nice things.” He’s a non stop eating machine.  In the last two weeks alone we’ve had to leave work early to pick him up after an aftercare meltdown, and we’ve had to retrieve him from a neighbor’s house after he just opened their door and went inside (again).  Who’s going to be always at the ready with an apology and an explanation for his behaviors?

If something were to happen to my wife and me, I really don’t know what would happen with our son, and that thought keeps me up at nights. We have prepared ourselves so that it would not be a financial strain on whoever would raise our son. Still, it’s a physically demanding job and will only get more so as he grows bigger, stronger, and faster. It’s a time consuming job, sometimes it feels like raising one special needs child takes as much effort as raising two or three typical children. It’s an open ended job, it won’t end when he turns 18. Most importantly though, I wonder who can take on this challenge and not feel that it’s a burden. Who can love him like we do and appreciate him in all the ways that nobody else understands? Who can just look him in the eyes and immediately forgive and forget whatever else may have happened that day? Who can hug him tightly and know that it’s all worthwhile? Sometimes it feels as though we need to outlive our son.

Whoever thought that we needn’t “fear the reaper” obviously was not the parent of a special needs child. 

                                                                                  

Where’s Ann B. Davis When I Need Her?????

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Dear Alice,

You are needed in my house more than you could ever know.  I need you to work for free, just like you do for the Bradys.  I can’t offer you your own room, but I have a nice futon in the playroom you could use.  I need you to create a portable cleaning station, like the hotel maids wheel around and just follow Michael 24/7.  Then you could sweep up the Girl Scout cookie crumbs that are all over the floor at 8 AM, and mop up the pee all over my bedroom floor that he found absolutely hysterical.    Please get an industrial strength Dustbuster because there are usually particles of popcorn ceiling all over the floor and furniture since Michael likes to climb dressers and scrape it off so it snows in the house.  The couches will need that, too, since they are usually covered in cereal or Cheez-It crumbs.  You’ll need to be sure your back is strong because you’ll be bending over constantly to pick up cars, shoes,  socks, puzzle pieces, fallen vertical blinds, and assorted toys.  I’ll be sure to show you my kitchen cabinet arrangement because you’ll find cups in every room of the house that will have to be put away.  You might want to invest in a broom with strong bristles because Michael brings half of the school playground sand home in his shoes daily.  Don’t bother to stop him at the door to ask him to empty them because he will fly past you and throw them off as he goes.  Take some classes in organization because there are papers on every flat surface – from bills, to school schedules, to homework, to unopened mail.   We’ll add you to our Sam’s Club membership so you can pick up commercial size laundry soap and gigantic boxes of Mr. Clean Magic Erasers.  You see, my boys know nothing about wearing pajamas two nights in a row or using towels more than once.  One of Michael’s favorite pastimes is flipping lights and fans on and off, leaving fingermarks all over switches and walls.  You’ll want to add some bottles of 5-Hour-Energy or very strong coffee to that list since the concept of sleeping past 7 AM (even on weekends) is foreign to my kids.  I’ll make you a strict schedule for the dog because if she isn’t taken out every two hours she will have an accident in the house.  If for some reason you cannot adhere to her schedule, just lock her in her crate until you can take her outside.   I’ll provide you with a lanyard that has our house key hanging on it; otherwise you won’t be able to get outside since every outer door has to be unlocked with a key.  Be sure to lock the door each and every time you come in or Michael will go for a jog around the city.  I have lots of snack in my pantry, but I will have to teach you the lock combination because that has to be locked up, too, the consequence being daily trips to the grocery store since Michael has it in his head that the pantry is his own personal free snack bar.

I’m afraid I can’t be much company to you like Carol Brady, but I have a full-time job.  I leave my home at 7:10 AM and I don’t usually arrive back until after 4 PM at the earliest.   Please have the kids’ playroom clean by 4:30 three days a week because Michael’s therapist works with him in there until 7 PM on those days.    On the other two afternoons of the week, I tutor and/or stay at school late to catch up on work, so you probably won’t see me until 5 PM.  My husband fights 45 minutes of traffic on a daily basis, so he’ll be home at almost 6 PM, although he spends many evenings volunteer coaching Christopher’s baseball league and doesn’t get home until almost 8 on those nights.  I actually enjoy cooking, so dinner’s on me.  l cook a nice meal for my husband, one of my kids, and me.  I’ll have to make something separate for Michael because he doesn’t eat 90% of what I cook.  After dinner, please clean the kitchen while I argue with Christopher about doing his daily reading and Mike gets Michael in the shower since he can’t properly wash himself yet.

Alice, I’d love to give you the weekends off, but that’s when I need you the most because at least during the week the boys are at school most of the day, so the house is quiet.  To be honest with you, most of your work will have to be done when they are out of school – Spring Break, three day weekends, winter holiday break, etc.

I hope you’ll consider employment with our family.  We don’t do sack races or have AstroTurf in our backyard.  We have TWO bathrooms and our home is half the size of 4222 Clinton Way.  There are only two kids as opposed to six………….well, scratch that – Michael makes up for at least 5 Brady kids.

I look forward to your reply,

Sincerely,

Jen

Gimme, gimme, gimme

This post was inspired by an article I read recently about the new trend of “gender reveal” parties. Apparently,  this is the latest excuse for recognizing, acknowledging, and throwing a party for every single little thing that used to be something that just garnered a “congratulations”.

Everyone in the modern world has noticed the way society has changed it’s attitude in the last ten to fifteen years.  It’s an attitude that screams “I’M ENTITLED; GIVE ME WHAT I WANT N-O-W“.  From new mothers receiving “push gifts” to kindergarteners receiving iPads for Christmas to ten-year-olds receiving iPhone 5’s as an upgrade from their iPhone 4S (which replaced the last 3 iPhones that they lost).    I know that none of this affects the way I raise my kids. But i won’t lie, these ideas drive me insane.  I’m going to break down some of the latest ideas along with my unbiased opinions.  I’ll apologize in advance if anyone is offended.

Gender Reveal Parties: There are entire boards on Pinterest dedicated to this idea.  Evidently, the idea is that when the mother has the ultrasound which would reveal the gender, the technician is instructed to place a piece of paper on which the gender is written into a sealed envelope.   The couple then hands this envelope over to a party planner, friend, or baker and then they can become part of the big surprise, too.  Bakeries are advertising “gender reveal” cakes; when the cake is cut into, the inside is either pink or blue and and then all of the celebrating can commence.  I’m sorry, but is this something really worth throwing a party to share?  Is a phone call or an e-mail not enough anymore?  I mean, it’s a 50/50 shot, right?  I don’t know that this is an excuse for presents (at least that’s what I’m reading) but for me, it’s definitely an excuse for recognition for something that has been coming naturally to women since the beginning of time.  Which brings me to……..

Push Gifts: I became aware of this trend about three years ago.  Honestly, this absolutely blew me away.  The idea here is that the mother receives a very large gift – usually jewelry, from what I have read – to reward and recognize her for the act of giving birth.  Um, hello, but it seems to me that your CHILD is the “push gift”.  I had 2 c-sections – should I have received a “slice gift”?  Or is that a cop-out and I get nothing?  I should have gotten breastfeeding gifts.  Now THAT’S an accomplishment that should be rewarded – instead women who do that get kicked out of restaurants and shopping malls.  So basically, HAVE a baby, get diamonds; try to do your best to CARE for that baby, get thrown out of public places.  Is the monetary value of the push gift based on the weight of the baby or the number of hours the mother is in labor?  What about adoptive mothers?  Are they unworthy of a push gift?  It’s too bad this trend wasn’t around 90 years ago because my great-grandmother had ten children.  She’d have been DRIPPING in baubles.

Babymoon:  This is a vacation that a couple takes before their baby is born.  Now, I’m not talking an overnight trip to a local resort – we’re talking Bahamas, Turks and Caicos, Paradise Island here.   Hey, I’m all for relaxing as much as possible before a baby is born, but let’s face it, kids are VERY expensive.  It would never occur to me to plan an exotic vacation while I’m pregnant.  Here’s an idea – I know this is unheard of – make that exotic vacation something which to look FORWARD.  Let’s face it, the people who are planning these “babymoons” aren’t exactly the folks who have been skipping out on trips pre-pregnancy.  My parents took four children to Walt Disney World when my brother was a NEWBORN.  No, I’m not condoning bringing an infant to Beaches Resort in Antigua, but your life does not end when a baby comes along.  You can still go on vacations.  We took our boys to Sanibel Island when Christopher was nine months old and Michael was 2 years old.  It was SUCH an enjoyable vacation.  Yes, that’s right, we took our kids along and STILL had fun.  The closest I had to a babymoon was when I was 6 months along with Christopher and  Mike and I spend about 7 hours alone at Discovery Cove in Orlando while my sister babysat Michael.  No, it wasn’t the Caribbean, but it was a really, really nice day.

Sip and See: Sorry, Rachel, (that’s my sister who recently shared that she’d attended one of these), but I just had to include this one.  This is the equivalent to a baby shower, but it is one thrown AFTER the baby has arrived.  Invitations are sent, food and beverages (including champagne) are served, and guests come to see the new baby.  I’d like to know if this is in ADDITION to the pre-baby shower.  I know that many moms don’t have a shower after the first baby is born (although I’m noticing that even that seems to be passe’) so I’d have to guess that this is a really good excuse to still receive those presents.

Now to go off-topic here, WHAT on earth is going on with these gift registries?  When I had my kids, I refused to register for stupid stuff like wipe-warmers and diaper stackers.   I didn’t even get one of those travel systems (stroller/car seat combos).   I did my homework and registered for a lighter stroller and a separate car seat.  The price for the two separate items ended up being less than the combo.  That type of thinking is evidently not acceptable.  The new thinking is – find the most expensive store with the priciest items, and put those on your registry.  Why ask for a practical stroller for $200 when there are much nicer ones with trendy brand names for $1,000?  I mean, you’ll be using it for about 2 years – that’s a long time!  What’s a thousand dollars in the grand scheme of things?  I mean your baby will spend approximately .01% of his or her life in that stroller.

So to wrap this up, no, this topic had nothing to do with autism or special needs.  I guess in a way, it relates to my life because when one has a child like Michael, all those little mundane things that were mentioned above are just so completely unimportant.  It’s sad that society feels that every little accomplishment deserves recognition – right down to the simple act of giving birth.  It’s sort of like those brides who go nuts about everything being perfect for their weddings.  It’s not the parties and celebrations that are the important – it’s what happens after that.  To borrow a quote from the film Hope Floats – “it’s the middle that counts”.