Black and White and Seeing Red

This was a particularly rough morning around the Enlow house.  Michael’s behavior pushed me to tears – something that hasn’t happened since he was very small.  After the dust settled, I realized how long it had been since I blogged and what a catharsis it is for me, so here I am.

Michael has been home sick for the entire week.  What started as a cold became a full-blown sinus infection with fever.  He literally slept the week away -the lethargy was actually worrisome at times.   A child being sick is stressful enough, but when your child is 14 years old and has autism, you can’t treat it the same way you can with a typical teenager.  Mike and I both work so this throws a slight curve into our lives, which most people only deal with when their kids are too young to be left alone.  That will NEVER be the case for us.  Christopher, at 13, can be left alone when sick – Michael, obviously, cannot.  And so Sunday began the “who’s-going-to-watch-Michael” shuffle.  Mike stayed with him 2 days, I took a day off, and my mom and Mike’s dad held down the other two shifts.  There are weeks like this where I TOTALLY get why so many parents of special needs kids cannot work full-time.  We are unbelievably fortunate that we have these nearby relatives who are willing to come on a moment’s notice to help us out.  So many people, especially here in this transient community, do not have that support.  So I’m going to take this opportunity (once again) to thank them.  I often feel terribly guilty because my siblings are far away and my parents cannot do for them quite what they do for us.  And to them, I say “thank you” for your unending patience and understanding.  Please know that we try so hard not to overstep our boundaries, but in our situation, we are sometimes just up the creek without a paddle.

Getting back to today’s meltdown…….Michael doesn’t handle “time off”, such as vacations and sick days, very well.  What seems like a time to kick back and decompress is a world of stress to him.  Being home for 5 straight days was a necessity due to his illness, but a curse because emotionally,he was a wreck.  I think today was the proverbial straw that broke the camel’s back.  He spent the morning screaming at the top of his lungs and biting his hand, all because he was trying to use electronic devices with low/dead batteries.  Then things got quiet.  I assumed he found a working iPad/iPod……….how wrong I was.  He had discovered a paint sample that we had purchased at Lowe’s yesterday, and decided to open it and paint our spare room with a tiny brush.  It was not pretty – not the room, and not mom’s reaction.

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It’s been almost 2 hours since the incident and my head is still spinning a bit.  (Thankfully, he is now taking a nice nap before we have to head to his running activity this afternoon.)

 

As for the rest of the family, we are working hard to make our new house a home.  Lots of calls to handymen, contractors, and visits to Home Depot and Lowe’s.  We are so thrilled with our new house.  The amount of space is just astounding and we love the neighborhood.  There are kids the boys’ age EVERYWHERE.  Christopher is outside daily riding bikes, playing ping pong, having Nerf gun fights, and going to the park.  It’s like an entire world has opened up to him.  We couldn’t have picked a better place.  Most of the reason we chose this area was because of the school for Michael.  His high school is withing walking distance and we are thrilled with the SVE program at the school.  It’s one of the smallest high schools in Broward County and we just knew that it would be the right fit for Michael when we visited.  His therapist works with him at school several hours a week, and he continues to make steady progress.

Well, as expected, I’m feeling better.  Things are in such better perspective in black and white.

 

 

Heartache Tonight

It’s been a sad few weeks for the entertainment industry – we lost David Bowie, Natalie Cole, and Alan Rickman in less than a month.

And then today at about 4:45 PM, my husband is looking at his iPad, and suddenly gives me a strange look.  He turns the screen around, and there it is – “Glenn Frey, Found of the Eagles, dies at age 67”.  I thought he was playing a trick on me.  I seriously thought someone put up a phony story online.  But neither of those things was the truth.  He was really gone.

The Eagles were the soundtrack to my life.  My mom played the Greatest Hits album and Hotel California (on vinyl) over and over on the spindled record player from as far back as I can remember.   They came to South Florida sometime in the early 70’s and a friend of ours who went to the show brought my mom a concert t-shirt.  And 30-odd years later, all those songs continued to be played in my house, on my car radio, and on my Apple devices.  Now MY boys know nearly every song and lyric and see THEIR mom wearing a concert shirt.  An era has truly come to an end with Glenn’s death; especially in this family.

For years, my brother has forced me to defend those 4 guys by tormenting me with stories about how the Eagles were the ones who drove concert prices through the roof, how crappy they treated their former members and he just loves to bark that famous line from The Big Lebowski at me (“I hate the f***ing Eagles man!” – said by the Dude from the back seat of a taxi cab).   And yeah, I’ve shelled out a good amount of cash to see their shows (three of them).  But I wouldn’t change that for anything.

I guess for me, it was more about the music than the backstories.  It was the happiness that music has always brought me.  The familiarity of it and the way it made me feel.

How does any of this tie in to the theme of this blog, which is supposed to be about raising a child with autism?  Well, Michael is a music LOVER.  Nothing lights up that kid like classic rock.  Tonight I sat alone in my bedroom with my iPhone listening to all my Eagles songs…..and Michael came right in, curled up, and listened to Glenn, Don, Joe, and Tim, right along with me.  He snuggled with me during “Tequila Sunrise” and “Peaceful Easy Feeling”, and rocked out to “Heartache Tonight” and “Already Gone”.    I think somehow Michael GOT it.  He knew that something was off, and he really connected with me over it.

So I thank all four of those guys for all the music they contributed, both together and apart. And to Glenn, Godspeed to you and rest in peace.  Thank you for the tremendous gifts you gave to me and my family.  Music will never be the same.

Gratitude

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Sometimes, small things make you stop and realize that there are some wonderful people in the world who happen to be connected to you, even in some small way. This week, two things happened, thanks to social media, that made me really remember how fortunate I am to know the people that I know.  Early this week, an elementary-middle-high school friend that I reconnected with on Facebook sometime ago, posted a beautiful article to my FB page about siblings of special needs kids.  Another college friend sent me a private message this morning asking timidly if she could send a survey to me for a Masters’ class because she needed some input from a special needs’ parent.   I was really touched by both of these gestures and it made me look back over the last 13 years and think about all the friends, both new and old, who have reached out to me and my family in some small way because of Michael.  Our family, has obviously, supported us in ways for which we can never express enough gratitude.   I have met some AMAZING people and one of my best friends through the special needs’ community here in our area, and Michael’s therapists and teachers have been top-notch.

But there are so many people whose voice I haven’t heard in years, who I haven’t seen face-to-face in decades, and yet, they have shown compassion, concern, friendship and love.  So to everyone who has sent a donation to Autism Speaks on our behalf, sent articles to me, shared dates/times for special autism-related TV segments, emailed or called me to ask how Michael is doing (and how our family is doing), I just want to say a tremendous, heartfelt THANK YOU.    You need to know how just a small gesture has made such a big impact on my life.

World within a world

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“What school does he go to?”  Twice in the last two weeks complete strangers have asked this question – referring to Michael; once at an ice cream parlor, once in the dentist’s waiting room.  It almost feels like a secret password/phrase.  As in “I understand he’s different, and I wonder if you’ll open up”.  And I don’t mean they were being intrusive- in fact both ladies who asked me that question were nothing but kind.  The first woman had a child herself with autism, and the 2nd woman was a former ESE specialist.  There’s a feeling I can’t explain when interacting with people who are directly enmeshed in this world in which I live.  It’s like meeting someone who fluently speaks a language that most people don’t comprehend.  Over the years, I’ve attended so many events that are attended by these same amazing families – sports & recreation events, school meetings, field trips, social gatherings.  When I’m surrounded by these wonderful people, there’s a sense of calm – a sense of tranquility.  We all know that we’re part of the same world; that we share something that others cannot truly understand.  We just connect.  And there’s something so comforting in that knowledge.  I’ve attended open house for Michael since he was in kindergarten, and sitting in the classroom, surrounded by the parents of Michael’s classmates, there’s a feeling I can’t quite explain.  It’s like we’re all members of this secret society, and the outside world has disappeared for half an hour.  Then when that meeting convenes, we’re sent back out to do our battles.  Ironically, it’s probably the way our kids feel sometimes outside of their little protected world in the classroom.

Every summer, my sisters and nephews come to visit for about a week.  My boys both adore their cousins.  And so many times when I watch my nephews and their moms I wonder “What is it like to just have children without any special needs at all?”.   I cannot even fathom what that is like.  I’m not going to lie – many times I envy families like that.  What would it be like if I could leave my 13 and 11 year old boys home alone for an hour in the morning so I could go take a Zumba class or get a haircut?  What’s it like to be able to go to happy hour after work without worrying if Michael will start crying in aftercare because I arrived past 4:15?  So many things that people simply take for granted, and yet for me and so many others are impossibilities.

If it was possible, would I take Michael’s autism away so I could have a different kind of life?  I really don’t know if I would.  The quick answer is “yes” – and people who aren’t in my situation might give that same response.  Would a parent of a typical child change something about him or her to have a “better” life?  Autism is a part of who Michael is.  He’s sweet and funny and affectionate and doesn’t have an unkind bone in his body.  (How many 13 year old boys can you say THAT about????)

Being part of this little world has changed something inside of me for the better.  And there are people and friends I have met because of this little world that I can’t imagine living without.

Autism Awareness……….what it means to me.

MichaelSo today is April 2, 2015.  I realize I haven’t blogged in almost two years.  But today I finally had something to say.  I started this blog to share my thoughts and feelings about raising a child who had autism.  So on today, “World Autism Awareness Day”, I figured it was time to pick up the writing again.

Today, the internet and television are FLOODED with reminders to “Light it Up Blue”, wear blue, post a ribbon on your Facebook status, etc.  The entire month of April has been designated as “Autism Awareness” month.  All of my friends who have children with ASD are posting stories, thoughts, and feelings on their statuses.  And yes, it’s all very nice.

But what does autism awareness mean to someone who has been intimately “aware” of autism for 10+ years?  Where do I start?

I’m going to begin with this whole “wear blue/Light it Up Blue” business.  All of this “blue” business started with the organization, Autism Speaks, created by Bob and Suzanne Wright, when their grandson was diagnosed with autism as a toddler.  When Michael was younger, we raised money for this organization (even were awarded “Grand Club” status for bringing in over $1000), attended their walks, bought puzzle pieces in stores, etc.   But honestly, over the years, I myself have lost a lot of enthusiasm for this foundation, due to the way autism has been portrayed to the public.  There is a movement of people who are firmly against Autism Speaks because of different reasons – one of them being the “doom and gloom” presentation of autism to the public.  Is autism hard to handle as a parent/caregiver/friend/family member?  Yes – absolutely.  Has it ruined the lives of all of those afflicted by it and/or their families?  That would be an affirmative NO.  Bob and Suzanne and their daughter, Katie, are passionate about helping families afflicted by autism and have done some wonderful things for the autism community.  There’s no denying that.  They fund research, raise money, and have developed some great online tools and networking opportunities for families who are struggling through diagnosis.  They have created documentaries spotlighting families with children on the spectrum. But my personal view is that, in addition to the good things they are doing, they are creating pity for the autism community.  Think about this for a minute.  Is pity something most people strive to receive?  I, for one, DO NOT.  Do you know that, according to Google, “SHAME” is a synonym for pity???   I am NOT ashamed that my son has autism.  I have met some of those most amazing people in the world that I would have otherwise never known had it not been for Michael.  I don’t want OR need pity and I certainly do not have shame when it comes to our situation.  What I hope for is ACTION; and the realization that everyone dealing with ASD is going through something different.   There’s a saying in our community – “If you’ve met one person with autism, you’ve met one person with autism”.  I don’t see that thought resonating through the Autism Speaks organization. As a matter of fact, just prior to writing this blog, I read an article where Suzanne Wright called the diagnosis of their grandson “horrifying” and “heartbreaking”.  Not really words that I want to associate with my son.  After all, autism is not a death sentence.

For years, I wished for Michael’s autism to “go away”; I searched for that magic supplement that he could swallow that would make him speak and socialize; we went to four different doctors to evaluate him and decide the best types of medications for him.  I thought surely SOMETHING would change him and make him better.  But honestly, is that the way to go through life instead of appreciating him for what he IS?  Michael will be turning 13 next month.  For those of you who haven’t met him or haven’t seen him since he was small, he looks like a regular pre-teen, although he’s smaller in stature than most of his peers.  He can speak, but only 5 – 6 words at a time at the most.  His receptive language FAR exceeds his expressive language.  He understands most everything he’s told or asked and follows directions well.  He has little interest in playing with other kids and is much more content to put on his earbuds and listen to his iPod for hours on end.  As far as his demeanor goes, you’d be hard pressed to find someone sweeter than Michael.  He loves his family, his teachers, his therapists, and classmates.  Recently, he’s been playing “Masterchef: Junior” in my kitchen – the concoctions that are put into my microwave are……..interesting.  He’ll request to make brownies or popcorn and will happily help me in the kitchen.  He loves to go for walks, especially when Mike walks our dog around the neighborhood.  When he’s frustrated about something, he’ll yell and bite his hand or exclaim “I need help!”.  He still needs help taking a shower and is learning (at almost 13 years old) to tie his shoes.  It seems (knock on wood) that he has FINALLY stopped eloping and we no longer have to worry about police officers knocking on our door at 8:30 in the morning because he escaped out of the house while we were sleeping.  We take family vacations every summer and Michael has a great time.  No – we haven’t gone on an airplane with him since he was a baby, but we are hoping that kind of trip won’t be so far into the future.

We are EXTREMELY fortunate to live where we live because there are such phenomenal programs in our community for children with special needs.  Michael has been running and playing soccer for almost 5 years with a local organization called Parkland Buddy Sports and is now attending a music program through an organization known as “The Friendship Initiative” started by an extraordinary man named Jeb Niewood who has worked tirelessly to provide opportunities for children with special needs.   I am also blessed to work for an employer who provides benefits which cover 100% of Michael’s intensive ABA therapy which he receives in our home 4 to 5 days a week.

I read an article today written by a mom with three daughters on the autism spectrum – she made some very good points.  Autism Awareness isn’t a “celebration” – while you wear your puzzle pins or maybe install your blue light bulbs, remember the little things that can be done that will really make a difference.  Volunteer at an organization that directly helps people with special needs.  Talk to your children about treating all people with respect – no matter what their challenges may be.  Talk to that bagger at the grocery store who obviously has challenges instead of trying to get away from them as fast as you can.  Every person in this world has a reason that God placed them here.  Remember that when you shake your head and whisper “poor thing”.

Autism awareness isn’t just being aware of what autism is and feeling sorry for those of us touched by it. Actions speak louder than blue lights.

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