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

 

Once 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?????

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”.

The Unwritten Christmas Letter

I’ve never written a Christmas/holiday letter.  Honestly, I don’t even receive too many of them, but the one or two that I do receive are quite bemusing to put it nicely.  I decided that this year, I was going to write one – not to send, just to write.  It was a practice in embellishment.  I wrote two versions – Version A -the embellishment – and Version B – the truth.  I don’t know how entertaining this will be for my readers, but I found it fun.  

 Version A

Dear Cherished Friends and Family,

Merry Christmas, Happy Hanukkah, Happy Kwanzaa, and Happy Ramadan!  We have so many friends of so many different cultures, we want to make sure that everyone’s faith and culture is acknowledged.  We hope this holiday letter finds you as joyful and spirit-filled as our family has been!  We’ve had a wonderful 2012 and look forward to more excitement in the New Year!

Mike is still working for Northwestern Mutual and continues to receive accolades for his phenomenal work.  He continued to manage Christopher’s baseball team for the fourth season in a row!  All of the boys he coaches love him and request him every season when they sign up for Little League.  He still enjoys attending major sporting events and always seems to find himself hobnobbing with all sorts of professional athletes!

Jen is still working tirelessly as a fifth grade teacher in the #1 rated private school in the city of Parkland!  She has implemented such creative lesson plans including the addition of the iPad in the classroom!  She is so fortunate to work in such a prestigious school where technology is a top priority!  Although she enjoys teaching, Jen still finds no greater joy than being a mommy and a loving wife.  Can you believe Jen and Mike have been married twelve years?  They celebrated their anniversary by spending some alone time at a 5 star resort!  Jen continues to spend her free time cooking and trying out recipes, writing her blog, and taking tap dance classes!  Yes, Jen has gone back to her dance roots and is participating in an advanced tap class at a local dance studio.  Between all of these hobbies, endless social invitations from friends, teaching, and caring for the home, it’s a wonder this letter got written at all!

The boys are the joy in our lives.  Christopher is in the third grade this year and is preparing to make his first holy communion in the Spring.  He continues to make phenomenal grades and is at the top of his third grade class.  We’re a little concerned that he isn’t being challenged, so we make sure he participates in other academic activities.  This year, he won a gift card for answering a very difficult brainteaser in a local magazine, he completes additional math problems every week outside of school, and creates virtual architecture using the computer and other technology.  We are excited to report that he participated in a special Catholic Math League challenge and finished at the very top of his entire class!  Not surprising since he always receives straight A’s on his report cards.   He continues to play both Winter and Spring baseball and we are inquiring about travel ball because, again, we just don’t feel he’s being challenged to the best of his ability.  He participated in a very prestigious baseball camp this summer and was awarded MVP on his team!  It was a very proud moment for all of us.

Michael is showing amazing progress in school.  He also received TWO awards this year in school!  We are so thrilled!  He is also participating in sports and was accepted to a sports program that only admits exceptional athletes.  He participated in both track and soccer this year and loved them both.  Michael shows such consistency of character and is a joyful child who brings much happiness to our lives.

Unfortunately, we were unable to travel as much as we’d hoped;  we were only able to make in-state trips this year.  We visited Captiva Island where we took a boat trip, went for waverunner rides, and enjoyed amazing restaurants.  The weather was perfect.  We also enjoyed our standard trips to Universal Studios and Islands of Adventure.  Of course, we had the time of our lives.  Although we didn’t travel as much as we’d liked, the reason is a positive one – we are remodeling our entire home!  We’ve painted and re-floored, renovated both bathrooms and are getting ready to get a brand new kitchen.  Jen is just ecstatic!

Life in the Enlow home just couldn’t be more perfect.  We are truly so blessed and we hope that you feel the same way.

From  our home to yours, a very warm and happy holiday season!

 Version B

Dear Friends and Family,

Happy Holidays.  We hope you had a nice 2012 and that you have a very happy New Year.

Mike is still at the same job; he’s worked there 3 ½ years and really likes it.  He hates the commute since there’s no easy way to get there, but he likes the people he works with and enjoys what he does.  He has coached Christopher’s baseball for the past few years and has managed to keep the same kids together since they are nice boys and the parents like him.  Plus, the kids’ families aren’t ultra-competitive so they make it bearable.  A friend of ours has worked for the local paper as a sportswriter for many years and gave Mike and Christopher some tickets to a few Miami Dolphins games.  They ran into Bob Griese coming out of one of the games and Mike asked if he’d let him take his picture with Christopher.  It was kind of cool.  We also trekked down to the new Marlins stadium this summer to watch the Boston Red Sox play the Miami Marlins.  We thought Christopher would enjoy watching his favorite baseball player, Kevin Youkilis, (who incidentally got traded a week later), but all the boys cared about was eating popcorn and other junk food and after half the game they were complaining they wanted to leave.  Also, it just so happened that the Red Sox lost the game we attended and then proceeded to win the rest of the games in the series on the other two nights they were here.

Jen is still teaching fifth grade at the same Catholic school.  It’s pretty exhausting this year, but teaching isn’t the world’s easiest job, especially when every school in the nation is changing the standards and expecting the teachers to just roll right along.    She enjoys cooking, even though her family isn’t real big on trying new things.  She is taking tap classes and finds it fun, even though it’s not always easy to head out of the house at 8 PM after working all day.  She does like getting together with the girls for drinks and laughs; especially her fellow autism mommies who are some of the most fun people with which to spend time.  Jen and Mike celebrated twelve years of marriage by going to the Hard Rock Hotel and Casino in Hollywood for one night.  The boys celebrated by spending the weekend with grandma and papa.

Christopher is in 3^rd grade this year and is getting ready to receive his first communion.  Jen really needs to get off her duff and start taking him to church more.  He’s doing very well in school and his grades are excellent.  He really is a great kid, especially with having a brother who is challenging.  He’s really learned to develop kindness and sensitivity and we really are very proud of him.  He’s proven to be a wonderful brother and an all-around great kid.  He is a great baseball player and attended a week-long baseball camp that we won for him at a school fundraiser.  He had a lot of fun and was awarded MVP by his coaches.  He received that award not for skill, but for being a good listener, showing sportsmanship, and working hard.  It was truly a proud moment for us since we really do value those things more than seeing our child headed to the majors.

Michael is making strides every day, every week, and every month.  It’s not easy to raise a child with autism – simple as that.  He takes two different medications, has therapy three afternoons a week, and participates in a sports program for kids with disabilities.  He’s still obsessed with ceiling fans and hangs out in the kitchen eating junk food whenever he gets a chance.

We went to South Seas Resort on Captiva Island for Memorial Day weekend.  It was a huge splurge, but we had a lot of fun and it was worth it.

Just after Halloween, we discovered a leak in our guest bathroom that turned out to be a hot water leak.  The plumbers punched holes in half the walls in our house which the insurance company had to repair, and we ended up getting a lot of work done in the house.  By finagling some numbers, it looks like we may actually have enough money to replace cabinets and countertops in our kitchen which have been driving Jen crazy for the ten years they’ve lived in the house.

Since I’m writing this during my rare free moment, I’ll apologize in advance for the photo that will likely be enclosed.  Most likely, Michael won’t be smiling or looking at the camera, but if we actually have a good shot of him, then Christopher probably looks like a goofball.  Don’t pay too much attention to the stains on Michael’s shirt.  I tried to keep him clean before the photo, but he got into some CheezIts just before I took the shot and at this point, I just give up.

Happy Holidays and Happy New Year.

Love, The Enlows

A Lesson from Mr. Miyagi

“Lesson not just karate only. Lesson for whole life. Whole life have a balance. Everything be better. Understand?”

I got to thinking about this quote today.  It started with something so simple.  Christopher got involved in an after school club this year called S.O.P.E. (Save Our Planet Earth).  They meet one Thursday a month from 3 to 4 PM.  Today’s meeting happened to coincide with the afternoon that Michael was to meet his new ABA therapist.  I had promised to be home at 4:30 to meet them, and I had an afternoon parent-teacher conference at 3:00 to boot.  I had mentioned to Christopher that, unfortunately, he could only stay at his meeting until 3:30.  When my conference was over, I went down to the science lab to pick him up and then to head to Michael’s after-school program.  He was so interested in the interactive movie they were watching and sharing popcorn with his friends that I felt bad making him leave.  I decided that even though it was going to be inconvenient (and I’d been wearing high heeled boots since 7 AM that I was ready to take off already) I’d go pick up Michael, and then come back as quickly as possible to get Christopher.  As I walked out to my car to drive to Michael’s school, I truly realized the magnitude (to me, anyway) of this decision.  What message would Christopher get, no matter how subtle, if I made him leave his club early?  “Sorry, honey, but Michael and his therapy come first.”  Do I EVER want that thought to even approach the transom of his mind?  Never.   Christopher is an amazing kid.  The things that he does for his brother are mind-blowing.  But I also have to constantly remember that he is a child and he deserves to have the same normal and happy experiences as anyone else.  When he looks back on his childhood many years from now, I want him to have the same feelings that I have – joy.   I never want him to feel that he ever had to miss out on anything  – not even a club meeting – because of his brother.

At this moment, my classroom is probably a fire hazard with all the piles of paper that haven’t been graded.  At another time in my life, I’d be tearing my hair out worrying about it.  Don’t get me wrong, I really do love teaching and I work hard from 7:30 AM to 3:30 PM  (and plenty of hours beyond that).  I care deeply about the progress my students are making and I try to do all I can to ensure their success. I’ve come to a realization, though.  Right now, my top priority is my family.  These are precious years that I realize are slipping by so quickly.   Christopher asked if he could have some coffee one morning before school (we let him have tiny bit on the weekends – it’s more like cream & sugar with a drop of coffee).  I told him that no, coffee is for adults.  His response was “Well, can I have HALF a cup since I’m halfway to being an adult?”  Wow – now that was a shock to the system!

I have a therapist that I myself see a few times a month.  I’m not ashamed to say that.  It’s not the first time in my life that I’ve talked to someone about things in my life that are overwhelming.  BUT, it is the first time in my adult life that someone has truly helped me to put those things into a format that I can handle emotionally.  As a person who holds a college minor in dance, I know how important balance is.  I’m glad to have it back in my life and I hope and pray it’s here to stay.

Just feelin’ the love…..

As Mike discussed in his touching blog entry, it’s difficult to convey the happiness and joy that Michael can bring when you are not with him every day.  This past Sunday, Mike had to head out for a few hours and the boys and I sat around all morning in our pajamas.  Chris was off playing his Xbox, while I sat in the living room watching “Oklahoma”.  When Michael heard all the music and saw the dancing, he immediately ran over to watch it in my lap.  While Laurie, Curly, and Aunt Eller sang about livin’ in a brand new state, I sat with my little boy while he giggled and snuggled with me for almost a straight hour.  Although, I knew I had more pressing things to do like make a grocery list, fold laundry, and take a shower, I allowed myself to enjoy this time with him.  And I know he loved it, too.  No, he doesn’t tell me in words – he doesn’t have to.

I’d love to tell you the rest of our Sunday went as smoothly.  I’d love to tell you he was happy and cooperative the rest of the day.  I’d love to say that we went to Running Buddies (his sports program) that afternoon and he cooperated and stretched with the others, ran right alongside his buddy, and didn’t spend every single second trying to figure out how to get away from everyone and go back to the playground.  I’d really love to say that – but I can’t.  At one point, Michael’s buddy came over to the table where three of us moms sit and enjoy our one hour Sunday hiatus.  His question?  “How do I get Michael to pay attention and focus more?”  I could see my two friends faces start to puff up as they tried to stifle their laughs.  The question of the century.  The poor kid; I didn’t even know where to start.  But the hour finally came to an end, I thanked his buddy profusely and finally allowed Michael some time to go on his beloved swing.  After a few minutes, it was time to pack up.  I thought this particular episode of “Battle of Wills: Running Buddies Edition” had come to an end.  But the second Michael got off the swing (and this session of running is over mind you) he decided to go for a sprint since he saw chips that another group had laid out under one of the pavilions for some kind of cookout.  This pavilion was a GOOD 100 feet away.  How his little spidey-sense picked that up, I have no idea.  Maybe I’ll bring a bag of chips next time and his buddy can dangle them in front of him like the little mechanical rabbit that goes around the track during the dog races.  Needless to say, that whole episode had me completely stressed out.  But during our ride home, I turned on the radio, watched Michael dancing in the backseat, and felt myself begin to relax.  I told myself to let it go.  Instead of letting it keep me angry and upset, I let myself enjoy the music and smile at how much my little guy enjoyed it, too.   Make no mistake, I was still exhausted when I got home and Mike took over Michael-duty for the evening.

Fast forward to Monday morning.  I’m sitting down to have a bowl of cereal and Christopher hands me a pile of papers he’d brought home from school on Friday.  Everything looks great as usual (yes, that was a brag – sorry!), and then I come upon a religon test.  All of the answers are correct, and I see the word “Wonderful!” written in bright pink ink about halfway down the back of the test.  The instructions for one particular item were to “Draw a picture or write a poem that will help you to express your faith in God”.  In the slightly sloppy printing of a nine-year-old, this is what I see

At church I pray to you deeply, I think about all you’ve given me.  I trust you to help my brother, I ask that you let my brother be safe.  I thank you for helping me when I’m sick and for giving us all your Son.

Yes, tears, right into my Fiber One Caramel Crunch.  I asked him at least three times “Did YOU really write this?  Did someone help you?”  I’m sure glad I’m doing something right.

Life is not perfect.  It’s a long bumpy road ahead.  But I have so much for which to be thankful.  I used to be someone who dwelled on negativity.  “Why me?  Why my child?  Why can’t my life be like his/hers?”  And there are going to be days like that now and forevermore.  But those days are beginning to have wider spaces and every day I find another reason to love the life I have.

The Boy Nobody Sees-by Guest Blogger Mike Enlow

First, a thank you to Jen for letting me write this blog entry. I don’t think that I would write enough to have my own blog, but from time to time there are things that I’d like to share too. 

I’m used to the looks now. Sometimes it’s a look of annoyance, sometimes a look of confusion, sometimes a look of sympathy, sometimes it’s a look of pity. I’m used to all the looks I receive when I’m with Michael somewhere or when someone is at our house visiting. In general I think that people mean well and most people are very warm and loving toward Michael. Still, I can’t help but feel like they’re thinking “Wow, I can’t imagine dealing with him every day.” 

When Michael is out in public or there are unfamiliar people in our house, he can become very agitated. This manifests itself in many different odd behaviors such as obsessing about fans, making strange noises, running away, biting himself, turning lights on and off, and others. That’s when the looks come. I know what people are thinking, some variation of “Oh, poor Jen, she can’t watch Christopher’s baseball game because Michael is being disruptive” or “why is that boy stomping his feet so loudly in the store, I think there’s something wrong with him. His poor dad.”  Because Michael gets agitated around other people, other people only see Michael when he’s agitated.

I get to see Michael though when nobody else is around. I get to see Michael when he’s waiting at the door for me when I get home from work. Everyday I know that he’ll be the first one to greet me. I get to see Michael when he tries to squeeze in a few more minutes of sleep by curling up next to me in the morning. I get to take Michael to school everyday and make him laugh, or go over his letters and numbers with him. I’m the one who is sitting on the couch when Michael comes over smiling and laughing and pushes my IPad away because he wants to play. I’m the one who sees the big smile on Michael’s face as he hands me my shoes because he wants to take a walk together. I’m the one who can’t say “no” to Michael when he’s waiting at the door because he knows I’m leaving the house and he wants to come with me wherever I’m going.I’m the one who he hugs and kisses each night as I tuck him in. Nobody makes me laugh as much as Michael and nobody warms my heart even half as much.

I wish that everybody could see the boy that I get to see every day.

 

 

 

Introducing: The One Minute Writer

I happened upon this blog today that offers an interesting idea; respond to a particular prompt (posted daily) and answer it within 60 seconds.  I’m going to give it a try and see what interesting things come of it.

Today’s prompt:

Do you think of yourself as young, old, or middle-aged?

I know that chronologically, I might qualify as middle-aged.  BUT, I still feel young in many ways.  I still like cartoons, movie quoting, and being silly with my kids.  I know that I show my age when I catch myself saying things like “Please turn off the television – I’m tired of listening to it” or “When I was in school….was a kid….etc.”

OK, well that was over a minute……….

Anyone care to try???

 

 

Lampposts, Loved Ones, and Letting Go

This has been a blog post I’ve had in my head and heart for about a week.  It’s with a sort of irony that today is the day I decided to actually compose it.  Over the week or so, things have looked so bright and happy.  It’s amazing sometimes on what an unbalanced platform a special need parent lives.  I read a blog post this morning that sort of pulled my mood into the muck and mire.  It was written by a mom of an autistic 13 year old who was musing about her worries about the future.  I HATE that I cannot shake that feeling of sadness; but perhaps I need to take a look at my blog title here and focus on that last part.  So now onto the post……

Some time ago, my son’s developmental pediatrician told me of two documentaries about autism, both available on Netflix.  I finally watched one of them last week titled Loving Lampposts: Living Autistic.  It was a documentary about autism and the many views society has on it; it focused on people of all ages who live with autism and how it affects their lives.  What I loved about this film was the positive spin it put on things.  It tried to dispel society’s view of autism as a “sickness” or “disorder” and look at it more as a “difference”.  It put accountability on society to learn to accept rather than fix autism.  Many times we are so very focused on “the cure” and “the blame” that we forget about “THE PEOPLE”!  I’ve often noticed parents and caregivers over the years who are so focused on finding out causes and at whom to point the finger, that I wonder if their time would be better spent helping out their own child; getting to know his/her likes and dislikes, the things he/she CAN do, and trying to unlock the potential that is inside instead of throwing blame around.  A point that really struck a chord with me was that over the years there have been SO many things that claim to lessen or eliminate the symptoms of autism.  Almost every idea I’d heard of was mentioned in the film – hyperbaric oxygen therapy, gluten/casein-free diet, elimination of preservatives, going 100% organic, chelation, secretin, choosing not to vaccinate, DAN! doctors (who are not covered by insurance by the way), etc.  The truth of the matter is, NONE of these is proven to “cure” autism!  It’s MADDENING to listen to parents who are so staunch about telling each other what they should and shouldn’t do!  NO ONE is in the same boat.  Not long ago, a friend of mine posted a question about her son’s medication on Facebook, only to be met by one of her “friend’s” tongue lashing about how she controls her daughter’s symptoms with diet and supplements and how she should look into this rather than depend on meds.  Seriously?  I know I blogged about that before, but that is EXACTLY what parents DO NOT need to hear, PARTICULARLY from each other!!!  We feel judged enough by society already, and we don’t need friends or family trying to tell us what we should and shouldn’t do.  To the readers of my blog, if you have the means to watch the documentary I’ve mentioned, please do.  If you have other friends, acquaintances, co-workers, or family who would benefit from learning more about autism, please recommend it.  Several years ago, I was at a bachelorette dinner sitting with a friend of the bride and telling her about Michael.  She had NO idea what autism was.  Believe me, defining autism is no easy task.  This film does a great job of showing it without throwing in the doom and gloom that the media likes to portray.

For a couple of weeks each summer, usually about mid-July, my siblings come to visit in South Florida.  I have two sisters and a brother.  One of my sisters lives in Orlando, one is just outside Atlanta, and my brother lives in Los Angeles.  They all coordinate to try to at least spend a few days here at the same time.  Both of my sisters have children (all boys) and the kids have the time of their lives when they are all together.  Their ages (including my boys) are: 5, 8, 9, 10, and 11.  Now let me say that my immediate family (meaning myself, my husband, and our two kids) are not regular summer vacation travelers.  This year we did spend Memorial Day weekend at a beautiful resort on Captiva Island, but made no travel plans beyond that.  The last few years, we traveled to visit my sister in Georgia for the Fourth of July, but since the 4th fell mid-week this year, we skipped it.  We’re just not big travelers.  I know people who have visited a different group of states every summer, others who spend it in time-shares, and others who travel the country weeks at a time to sight-see and visit theme parks.  Our big event for the summer is seeing all the cousins, aunts, and uncles.  It doesn’t matter if we spend the day in my parents’ pool, go bowling, eat ice-cream – whatever.  We just enjoy ourselves.  We’ve gone on a few trips together to various beaches around Florida and that’s been a blast, too.  But it’s no less fun when we just stay put.  I truly feel blessed to have this around me.  Every day I log onto Facebook and read about all the places my friends and acquaintances are going, the things they’re doing, the fun they’re having.

The “Fab Five”

And yes, I won’t lie, I know that many of those experiences are impossible for us to have as a family due to Michael’s affliction.  But at the same time, I don’t feel like I’m missing out.  And I know that our kids aren’t missing out – from the minute school lets out, Christopher is counting down the days until his cousins arrive.  They love each other and have so much fun together, I just know they are not missing out on summer fun just because they’re not on a cruise or zip-lining or riding America’s tallest roller coaster.  Now, am I condemning all who do those things in the summer?  ABSOLUTELY NOT.  Rather, I am embracing the differences among families and the way they find happiness.

I’ve spent a good portion of the summer working on little projects around the house.  The first and biggest was my “decluttering” project.  I went room by room each week and filled bags and bags with unnecessary junk.   While I was decluttering my home, I also found myself decluttering me.   It was time to start clearing out some of the old negativity I’d held about certain things, people, and, well, myself.   There are things worth holding on to, and things better off thrown away for good – an obvious observation when deciding which coffee mugs to keep and which to toss.  But when you feel yourself getting dragged down, you have to look at the things that are worth keeping in your life, and the things that it’s time to cut loose.  Maybe it’s an attitude toward a friend, maybe an unwillingness to say “no” which leads to stress, maybe it’s a tendency to get stressed too easily.  But whatever it is, it can be an enormous relief to just let go.

There are just three weeks left of summer.  A new school year will be here in the blink of an eye.  We’ve already done our school supply shopping – school shoes will be next!  We’re finishing up doctor’s appointments and soon it will be time to start classroom set up.   Here’s hoping this tail-end of summer is full of fun and sunshine!