Monday, March 16, 2015

The Making of Husbands

Dan and I (Amy) know we are raising young men who will become co-workers, friends, boyfriends, husbands, and fathers. We take this seriously because someone will have to live with them eventually, and if we get this right, they won't move back in with us.  This is assuming that Hunter Syndrome treatment progresses and our boys do this well too, but we believe this will happen with hard work.

Mission #1: Raise them to be kind and polite

I brought groceries home today, and Nick greeted me at the door with a huge smile.  He said:

"Thank you so much Mom! Great job! You bought these for me? Can I give you a hug? "

He proceeded to open each bag as if they were presents.  He opened a bag with two rotisserie chickens...

"You bought chicken for me, Mom!  Thank you so much! I love these, these are my favorite!"

Oops, I bought two that was a mistake.

"It's OK, Mom. Don't worry about it.  Can I give you a hug and a kiss?" 
"Dad, look shaving creme.  Mom bought you shaving creme.  Hug Mom, Dad, give her a hug.  Now say thank you. Now you're supposed to say you're welcome.  Look Dad, Mom bought your favorite drink.  Give her a hug. Thank you Mom, thank you!"
Don't you wish you were greeted with groceries like that? After you've dealt with mad, resting grumpy face, grocery store shoppers who are mad that it's snowing, AGAIN, and to be greeted like that by Nick is just awesome, really awesome!

Alex also used to cry at daycare if someone else didn't have a milk, and he did.  Jack also has a special place in his heart for special needs kids, and goes out of his way to help them at school.

Of course they're not perfect, but they're doing pretty well in this department.  Always room for improvement though.

Mission #2: Mind your basics

These are the don't smell like a turtle, always put the toilet (lou) seat down (which they do!!), brush your teeth always...just don't emit any gross smells. If you have to, do it in privacy, and for goodness sake don't emit them on anyone and laugh about it, it's not funny.  We know at this point you like to laugh about farts, and it's a struggle to get you to wash yourself but you'll get better with time.  Good job on the toilet seat though keep it up, well down.  

Mission #3: Be confident, and be you.

At this point, we are thinking it would not bother us if you decided to wear a mohawk, or brush all your hair in your face like vintage Justin Beiber, or dye your hair purple, we'd be fine and proud of you, and we promise to never be embarrassed about it.  We haven't had to test this theory yet, but we're thinking this is how we'd react and how we'd respond.  We do think you are all really, really handsome, which just writing that will probably make you tattoo something across your forehead (should we write this, it might be planting a seed),  pierce something or dye something so just forget we said that and wrote it.  

We won't let you be anything but you.  We won't let you act like something else, or pretend to be someone else.  If you feel strongly about something express your opinion, if you think something is wrong, say it.  Find your niche, your thing, be you.  

Mission #4: Use adversity to strengthen you

Don't let your struggles define you or your failures set you back, learn from them and move on. Failure is a necessary part of succeeding. You have big challenges that you're dealing with right now, and we are in awe of how brave you are, how strong you are, and how you deal with the hardest of things.  The world will sometimes feel very small and your failure will feel very big, but we promise you there's a big, wide world out there for your taking.  You might be upset that someone is mean to you but this is just one person in millions, this is just one small town in millions, one country in hundreds.  If you embrace other cultures, countries, you'll realize how small the views and issues around you are, and realize some things are just temporary, and not the biggest thing happening to someone in the world right now.  Use your struggle to pull yourself up, we'll be right there with you.

Mission #5: Find something that gives you great joy, builds your character and leadership qualities

Try being an athlete, an artist, or a musician.  Seek out things that can showcase your talents, teach you hard work, and to work as a team or an individual.  Find things that teach you about losing and winning, and how both feel.  Be the best you, you can be.  Find things that make your heart flutter, and make nerves in the pit of your stomach as you push yourself outside your comfort zone.  Be a leader even when you're not the Captain or the appointed leader, always act like one.

Seeing that you're only 4, 6, and 9, that's enough of a mission for now.  We love seeing you guys grow, and become these great, little people.  We'll do everything we can to fight for you, now make sure you do your part.


Your fans, Mom and Dad


Friday, March 13, 2015

Is Autism the new "r" word?

I really struggled with writing the title of this blog.  I changed it 5 times. What an awful title for a blog but we need to have a conversation about words.  Recently, I was delayed traveling home in Denver International Airport.  My cell phone battery started to die. In the Denver airport, the charging stations are positioned right near good old fashion pay phones, and they're clustered uncomfortably together, close together.  Little human communities are built as everyone is now using their laptops, phones, reading devices, and everything that feeds off of a battery charge.  I roamed around trying to find an area that was empty so that I could sit alone with my own thoughts, a rare, lovely pleasure for a parent of 3 boys. I sat among girls who went to college together, and felt very uncomfortable sitting on top of their reunion.  As my empty area started to fill up around me, I would get all sorts of different people clustering around the free electricity. Sometimes I would move to another area if it got too crowded.  My phone seemed to be charging really slowly, and I wished for it to charge faster.  A girl walked over and sat about a row away from me.  She might have been in high school or early college.  I'm realizing as I get older that I can no longer tell how old anyone is anymore.  If I think the person is in high school, he or she is likely in college. Nevertheless, a college-high school girl sat about a row away talking loudly on her cell phone, which isn't anything uncommon or special these days but there was no filter on what she was about to say.

Let's pause here.  To give you some context, I grew up in the 80s.  The 80s were fraught with bad hair and really bad catch phrases and buzz words like, "gag me with a spoon" or " that's so gay" or "retard" or "retarded".  Terrible, awful, stupid words.  In my house, my Dad has committed most of his life to working with adults with developmental disabilities or handicaps. I met many Autistic adults back when diagnosis was kind of rare, or at least awareness was a little more rare than today. We were never permitted to say the "r" word, "retard".  Never.  If we said that, we'd be grounded until at least 40, and we'd have no phone privileges.  Frankly, we didn't need those threats.  We went to holiday parties at disability centers and had respect for the folks we met.  We never, ever said these words.  They hurt. I had just recently made peace with the "r" word because it's pretty much everywhere when you're reading anything about Hunter Syndrome, or so I had thought.

Here are the words you read when reading about Hunter Syndrome, and some say you should get used to hearing them and not be offended by them, at all because they are medical terms and symptoms:

Coarse Facial Features
Mental Retardation, X-Linked (in other words to the mother)
Mental Retardation (no reference to X-Linked)
Claw-like hands
Broad nose and flared nostrils
Protruding tongue

some Hunter Syndrome patients also get a spot on the Autism Spectrum due to some symptoms that present with their disease, some anti-social behavior, aggression, developmental delays, and other symptoms consistent with the Autism Spectrum.

Autism Spectrum Disorder

The way I had made peace with these words, and the people who say them was that I realized they don't even begin to define my children and other children who these words are applied to by the medical community and others.  I had decided they, these words don't apply, period.  My children and others have so many gifts, they're people.  They're special.  What have we recently learned in the news about the man who was in a vegetative state for years? He could hear and understand everything around him!  I think you need to work with, or live with a special needs child to really understand that they are in there, they are in that body.  They communicate with their eyes, their facial expressions, their emotions, and many other ways.  If you understood that they are just as human as you and me, you'd probably not use those words to hurt them but instead we're intimidated and we label what we don't understand or think we understand.  My children hear the words you say about them, and trust me sometimes I hear things kids say about my children from other children. I see Alex on a daily basis hear what we are saying but he can't participate easily in the conversation, but he hears, and many times understands what we are saying.  We need to realize that no matter what anyone looks like on the outside they may be understanding you, or hurt by your words.  These are people inside of these bodies with thoughts, interests, talents, loving hearts, etc.  To date I haven't been bothered by these words so when someone says them, I try to say "that isn't who Alex is, and you need to protect special needs kids, they need your help because you can help them."  I recently asked Jack if he was embarrassed by Alex when we were picking him up from school, and Alex was running around and being loud in the school rotunda, he said "no, I am not.  I wish we could see him without special needs though".

Until the Denver Airport, I was never, ever bothered by these words. The girl near my little electric community proceeded to talk very loudly about a person she knew who was having trouble speaking, and he was so weird when he talked that she thought he was "like autistic or something".  What?  It didn't stop there either, when talking about someone else she knew, she said, "it's like he is gay or something." What again?  Cut. It. Out. As many dirty looks as I sent her way, she didn't even notice.  Even my loud huffing sounds drew nothing, no attention. I thought about throwing myself on the ground in front of her but she might have just stepped on me.  I was completely unprepared to deal with the word, "autism" being used in that way.  Is this the new "r" word?  Awareness is wonderful but sometimes this is what happens as a result, society grabs on to a word and twists it not only into a buzz word, but a description or a bucket that someone fits into, and that bucket is a bad bucket to be in.  Sometimes I secretly wish everything was published in Latin so it makes it really hard for people like this to grab on to a word, and use it for bad treatment of others because they can't say it!  Hunter Syndrome is really Mucopolysaccharidosis II, spell check doesn't even know what that is...and you can't really make anything too exciting from it to make fun of it, and it makes you sound intelligent saying a word no one can pronounce.

Now clearly this girl was making an error, and what double stinks is that we didn't get to have any dialogue about it. We can learn from this, we can.  Be the one who says something, wait for her to get off the phone and say something!  I also met a rocket scientist with 55 patents, and a man who worked out a lot and confessed his insecurities to me.  He indicated that he wasn't getting big enough at the gym, and was considering taking steroids.  This is what happens when you have a kind face in the airport! At least that man was potentially saved by some dialogue! I told him he might get bigger, it might attract the ladies he was after, some wouldn't like it, he may rage, and get angry a lot, and I heard his wiener may shrink...and that wouldn't bode well for keeping the ladies around. Just stating the possibilities and facts.

So what's the message here?  Please just take the time to talk to one another about how we talk about each other.  Ask your kids if they know any special needs kids.  Ask them what they think about those kids? Do they help them during the school day?  Or do they make them nervous, and they think they're different?  Have a dialogue about how people should be treated, how everyone should be treated with special needs or without.  It's OK for other kids to experience trial and error here but we really need to start talking about why we use these words about people who are just as human as we are. We can use you and your kids on our team! There are already many, many children and parents on our team, and we need you too!

Thanks for reading!


Tuesday, March 3, 2015

Living Next Door to a Special Needs Child

We will be buying a fence, and I'll explain why.  It takes a really special person to live next door to a special needs child.  The person who lives next to a special needs child can be an ally and an angel.  I am lucky enough to have a few of those angels living around me, and even further down the street. These angels look out for our kids as much as we do.  We keep a watchful eye on our kids, it stems from living in Chicago and always being within arms reach of them, and the fact that we're very acutely aware of their special needs. Alex doesn't have the ability to talk, and his hearing is intermittent so it's very important to keep him safe.

One beautiful, summer weekend several years ago, we were all out in our yard working and playing. Dan was cutting the lawn, and I was roaming around the yard keeping an eye on the kids.  Nicholas needed something in the house, so I took him inside to grab what he needed.  Dan was in eye sight of Alex so I was certain he was safe.  When I came back outside, Alex was no where in sight.  I gestured to Dan and he shrugged his shoulders.  I looked everywhere. His usual places and scanned the area by the 70 ft. deep lake by our house, he was no where to be found. I got really scared.  Alex had run over to my neighbors house, opened the back sliding door, walked through her house, up her stairs and climbed into bed like Goldilocks.  The photo below is blurry because he was moving, getting as cozy as possible to settle in for his nap.

My neighbor knew I'd be worried sick, and yelled out to me, "He's in here.'  He was happy, and cozy. What were we all worried about when he was tucked under a blankie ready for a cozy nap? I thanked them, and shuffled Alex back to our yard with a few new gray hairs, and a little bit of a toll taken on my heart.  This was un-chartered territory, and very scary.  We started looking up information about wandering, and how parents with Autistic children help keep them safe.  One additional time Dan went upstairs to put the laundry away, and Alex left our house. He went into another neighbor's garage, and walked in to their house. Dan just couldn't get down stairs and out of the house fast enough.  Our neighbor walked him back hand in hand, and delivered him safely to our door.  We've made modifications and put locks at the tops of our doors.  I know that this could happen with any child, it's just even more meaningful that this is a special needs child.  We do everything we can to ensure all of our children are safe.  We talk to our neighbors about our sons, and their disease.  99.9% of the time we've got them covered, it's just a rare occasion where we need help, our angels are there for us.

A few angels just sold their house, so we'll have new people moving in. Only time will tell if the new people will be angels, but to keep our little angel safe, we'll start with a fence as a little added protection.  Things have gotten much better as Alex is now older but we never forget that he needs extra help because he can't say, "I am Alex. I am lost."  We'll miss our angels next door. These are neighbors who we only lived next to for less than a handful of years, not 10s or 20s of years.  That makes them even extra special that they care so much about our family.  Alex will miss their cozy bed and that he never got to complete that nap.  Wherever their journey leads them, we'll make sure to visit. Thank you angels. We'll miss you angels!


The Cherrstrom Family