World within a world

Worlds-within-worlds

“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

19050021-illustration-of-a-group-of-raised-hands

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.