Melty Brain Soup

I don’t know about you, but this is the time of year when I start feeling mild despair.  It’s the middle of summer vacation for us and I really am enjoying having my teens around the house.  They’re great kids and they’re fun people, and I know one of these days in my not so distant future I’ll be sad because they’ll have moved out of our house and started their adult lives.  So I really am treasuring one of these last few summers I have with them.  That being said, they’re driving me nuts.

I guess my kids aren’t acting any differently than they do the rest of the year.  It’s just that the rest of the year they’re at school, driving their teachers crazy instead of me.  Apparently their teachers have a lot more tolerance than I do, as my kids don’t come home from school every day with lumps on their head.  By this time of the summer I’ve had several weeks of around the clock quality time with my children and as a result I’m seriously starting to doubt my abilities as a parent. 

I mean really, how hard is it to teach a kid to not leave their shoes in the middle of the floor?  Or to put their dishes in the sink?  Or to not leave empty soda cans in the bathroom?  (I’m leaving the discussion of how the soda can got into the bathroom in the first place for another day.)  I know one of my kids has high functioning autism, one has ADD, and the other is a major Geek and therefore mentally spends half the time on another planet.  (You know, a really cool planet where age old questions are finally answered, like who would win in a showdown: Granny Weatherwax, Batman or Q from Star Trek.)  I know I need to make some allowances.  However, it crosses my mind that if they are all capable of learning algebra then they ought to be able to keep the toilet paper holders filled.  So, it must be me, right?  Whatever I’m doing to teach them how to get along in this world, it isn’t working.  Shame on me.

But then I had a revelation.  I was standing in line at a store and I overheard a conversation between the two ladies in front of me.

“He always forgets to put on deodorant so I thought the smell coming out of his bedroom was him.  But it wasn’t.  There was a half-eaten sandwich on his desk.  It was green and had hair growing out of it!”

“That’s disgusting!  That’s almost as bad as what happened to a friend of mine.  She kept cleaning her kids’ bathroom but couldn’t get the smell out.  It took her weeks to figure out her pre-school boy was peeing into the heater vent.”

(I am not making this up.  Really.)

As the ladies continued talking, the light bulb went off in my head.  My kids aren’t dim and I’m not a terrible mother.  It’s just that they’re like all other kids – they’ve got melty brains.  Yup.  That’s the technical term – melty brains.

Neurologists talk about brain plasticity.  That’s the ability of our brains to change structure to allow the formation of new memories.  When we learn something, our brains rewire themselves slightly to store the new information.  That happens to us all.  But kids have it harder; their bodies are still growing.  They’re like this ginormous construction project that’s always active.  (Okay – we’re back to me talking here, not the neurologists.)  A new bit of information comes in and the brain gets busy trying to rewire itself and blammo – it gets hit with a wave of hormones.  Just as it clears the decks to get back to work, it discovers all its construction materials have been hijacked to add a couple of inches to the leg bones.  It gets more supplies, then a member of the opposite sex walks by and everything shuts down again.  By then the new memory has evaporated and the brain has forgotten it was doing anything in the first place.  See?  Brains plus childhood equals soup.  Melty brain soup.

I’m not saying that kids can’t learn anything and I’m not ducking my job of teaching mine to be decent human beings.  Nor am I relieving my children of their responsibilities to act civilized.  But I am going to quit questioning my parenting skills just because my kids are acting like typical teenagers.  Sometimes we parents of special needs kids are too quick to attribute our kids’ failings to their disabilities or our parenting techniques.  We need to remember that some childhood struggles are just part of the developmental learning curve.

For instance – pre-teens who don’t bathe enough to combat their newly developing stinky sweat glands.  Totally normal – ask any 6th grade teacher, especially once the weather warms up.

Having to teach your kids that washing their hair doesn’t mean just swishing a little shampoo around the top of their heads, that they have to actually scrub every inch of their scalps, even the part around their ears.  Normal.

Teaching them that if you ask them to take two garbage cans apiece out to the curb for pick up that you don’t mean two random cans; you mean two cans with garbage in them and not any empty ones.  Normal.

When you ask them to do something and they look at you and say okay, then when you get mad ten minutes later because they didn’t do it, for them to say “But you never told me to.”  Normal.

When you ask your kid why he did something and he says, “I don’t know.”  He really doesn’t and it’s absolutely normal.  Maddening, but normal.  It’s melty brain.

Your next question is, “Okay, so it’s normal.  What do I do about it?”  The answer is, nothing that you probably aren’t already doing.  You can’t hurry childhood development.  You can teach your kids some coping skills – write check lists, have them repeat instructions, explain the goal of what they’re doing (for instance, the goal of vacuuming is to get up all the little bits of stuff on the carpet, not to just go around the room a few times so you can say you vacuumed.)  You can also put things in place to make life easier when they blow it, like keep basic grooming supplies in the car (so when you’re half-way to school and you ask them if they remembered to use deodorant and they give you this blank look, they don’t end up walking around stinking all day.)

But more or less, you just have to wait it out.  Kids do eventually outgrow melty brain.  Ask parents whose kids are 25 years old or older.  Almost all of them are doing fine.  Ask those parents if when their kids were little, they ever thought they’d make it.  Some of them will say yes right away, but most of them will think about it a bit and let out a great big sigh.  Raising kids wasn’t easy then and it isn’t easy now, with or without autism.  Teaching them life skills is like dripping water on a pile of rocks in order to create the Grand Canyon.  It works, but it takes an awfully long time.

So have patience, with yourself and with them.  Enjoy your children’s good qualities.  When melty brain shows up, don’t let it drive you crazy.  Try not to criticize too much.  Help them fix whatever needs fixing and get on with life.  They’re all little ding-a-lings at this age, so we might as well enjoy the lunacy.

Besides, pretty soon school will start again.  My kids’ teachers may or may not be any better than I am at getting my kids’ brain cells to all line up, but that’s not the point.  The point is – they’ll be the ones doing it, not me.  Yay, public education!

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Successful Holidays

As a parent of a child with Asperger’s/high functioning autism, the key to getting through the holidays is to remember your goals:

1)      Survival.  If the kids live, you and your spouse make it, and all sundry friends and relatives are still kicking by the end of festivities – you’ve had a successful holiday.

2)       Everyone makes it back home again.  If you came home with the same number of kids you started out with (and they’re actually yours) and your spouse didn’t flee to someplace more peaceful, like a war zone – successful holiday.

3)      No serious bloodshed.  If no ambulances or police cars were called and no one was admitted to the hospital – it was a successful holiday.  Emergency room visits don’t count as long as everyone comes home with the same number of functioning parts they started out with.

4)      Property damaged caused by your family falls within your budget.  If they break it and you can pay for it – yay.  Successful holiday.

5)      No friends or relatives that you want to stay in contact with are so offended that you can’t mend the relationship.  Successful holiday, with bonus points if the people you didn’t like anyway decide to quit calling.

6)      Very important – You still like your children and spouse, and they still like you.  Not just love – like.  As in, after you’ve had a day or two to let your brain unmelt, you’d enjoy each other’s company again.  Total win – successful holiday.

            That’s my list.  I may have missed one or two items, but overall I think it’s a pretty complete and realistic set of goals.  Note the things that weren’t on my list:

1)      Having your kids eat everything on their plates at Grandma’s house.  If your kid is a picky eater, bring along some food he likes.  Stand up to Grandma, bypass whatever it is that he thinks is disgusting, and get something nutritious into him that won’t cause a fight.  It’s far better to have to deal with a disapproving grandma than to have to clean up a screaming, puking child.  Trust me on this one.

2)      Having your child spend every minute socializing.  He really can’t handle this.  You know how stressful the holidays are on you – they’re way harder on him.  Especially the socializing.  Find a time when he’s in a decent mood, introduce him around to everyone and have him interact to the best of his ability.  Then keep an eye on him.  When you think he’s lasted as long as he’s going to, give him an out.  Let him go someplace quiet where he can do something he likes and he has some control.  Don’t send him in to watch TV with his cousins, because if they aren’t watching what he wants to watch, there’s going to be a fight.  Instead, let him play with his favorite things (you did bring these along with you, right?)  A book that captivates him, a handheld video game, his action figures, his blankie – whatever it is that makes him happy and de-stresses him.  You want something that’s going to disconnect him from the world around him for a while and let him center himself.  Personally, I am not above buying something new for this purpose.  A little bribery so I can visit a little longer with Grandma?  Oh yeah.  Totally worth it.

3)      Your child is charming and polite to everyone.  Actually, this is a great goal – it’s just not very realistic.  You can keep this goal and work on prepping your child all you want, so that one day he can be charming and polite to everyone.  But don’t get your heart broken if he’s not quite ready for that this year.  As long as his social skills are improving, don’t be too embarrassed if he does something other people consider rude or odd.  It takes a strong parent to do this, but it’s really important.  If he throws mashed potatoes at Auntie’s cat, just think of last year when he threw the gravy bowl at the cat.  See?  Progress.  Last year was a broken antique, potential injury to the cat, and gravy everywhere.  This year, it’s just mashed potatoes on the wall.  Sometimes our kids will do things that embarrass us, but don’t dwell on it.  Remember how proud you are of him too.  Apologize, work on teaching him not to throw things in the future, and make sure to buy Auntie’s cat a really awesome Christmas present.

4)      Compare your child to everyone else’s kids.  Don’t even go there.  Yeah, their daughter will be a gymnast competing at the state level and their son will be finishing his Eagle Scout award six years early.  They’ll be going off to ivy league colleges with major scholarships because they’re so wonderful.  Or they’ll be playing the cello at the White House’s Christmas pageant because they’re so brilliant.  Whatever.  First, remember that the parents are bragging.  All parents do this and it’s okay, but they aren’t going to tell you the struggles their kids are having.  If Junior almost didn’t get to go to start his career as a professional baseball player because they had that little thing to work out in court, you’re not going to hear about it.  Second, remember that your kid is accomplishing things too.  He didn’t start out where their kids did.  He’s got a lot to learn about life and he’s doing that.  He’s not only making progress – he’s succeeding.  He is remaking himself on a level that typical kids don’t learn to do.  Don’t ever sell him short.  Yeah, learning how to conquer his sensory difficulties to the point where he can eat a sandwich even if bread is squishy, isn’t something that’s going to make your friends sigh with jealousy.  But it’s important and he’s doing it.  Besides, you can always do what I do.  Casually mention something interesting your child did relating to one of his areas of interest.  “Oh yes, we finally convinced James not to do any more physics experiments related to medieval weaponry in the house.  Now he has a nice workspace of his own.”  This is way better than saying, “We threw the kid outside after he broke the window by shooting marbles out of his toy crossbow.”  See – it’s all in the presentation.

5)      Be the perfect hostess or guest.  Don’t kill yourself trying to make everything perfect.  Enjoy your family and friends.  That’s the point of the holidays.  If this Thanksgiving is the one where you end up eating graham crackers and peanut butter off paper plates on a card table while watching your kid’s favorite TV show, he’s going to remember it as the Thanksgiving that rocked because he got to spend it the way he wanted to.  He’s going to be happy.  You find something that will make you and the rest of your family happy, too – even if it’s not what you envisioned as the perfect holiday. 

So, go forth and have a wonderful holiday.  Tailor it to suit your family.  If anyone else doesn’t think you’re doing it right, they can bite rocks.  Do something that you all enjoy.  Take a camera and take a lot of pictures.  One day, believe it or not, you’ll look back at today with at least a little bit of fondness.  That’ll probably be sometime after you finish paying for all the stuff that got broken.

– Cassie

PS — If you like this post, feel free to forward a link to anyone you think  may benefit:  http://cassiezupke.com/2011/11/22/successful-holidays

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Big Hairy Man Feet

All of a sudden, my son grew big hairy man feet.  He’s got big hairy legs, too, and whiskers on his chin, and hands the size of dinner plates, and a certain eau de manly-man-stink if he misses a shower.  And I just want to know – when did this happen?

It seems like just last month he was an adorable blond toddler, with soft duck-fuzz hair, beautiful blue eyes, and a curiosity that demolished furniture, plumbing, all breakables left within reach, and a few of our friendships.  He gave hugs that melted your heart, then as soon as your back was turned, he’d take apart the toilet to see how it worked or climb to the top of the bookcase to see what was up there.  I couldn’t keep ahead of him.  We were lucky to survive, what with him running through parking lots and his fascination with swimming pools.  But he was so sweet.  Was it really that long ago?

Wasn’t it a few weeks ago he was a three feet tall, holy-terror-tornado, rampaging his way through pre-school and kindergarten?  He was bounced from two preschools before we found special education.  It was a life-saver.  They welcomed my little ball of fire with open arms and helped him learn to slow down – a bit.  He still screamed if it was noisy, and he couldn’t make it through circle time without falling apart, but he learned to write his name and say his numbers and read.  And his hugs were just as sweet.

The primary grades were challenging.  There were tantrums, yelling and tears, and an awful lot of homework – hours of homework.  We had parent-teacher conferences weekly and sometimes daily.  We struggled.  The teachers tried so hard and so did we.  But there were precious times, too – ones I’ll never forget.  Halloween parties – hordes of little goblins running through the dark with glow-sticks and flashlights.  Cutting out mounds of paper snowflakes together and leaving drifts of white triangles all over the floor.  Smearing gobs of frosting on graham crackers, raining down candy and declaring it a gingerbread house.  Throwing Easter eggs into dye cups to see how high you can splash.  Watching fireworks at Legoland, then sleeping all the way home.  They were hard years, but some days I miss them.         

I’m not sure how we made it through upper elementary school.  We had less tears but more yelling.  Pre-algebra wasn’t easy, especially when he was convinced the text-book authors were idiots.  There were medication changes, and more medication changes, and yet more changes.  Essays were hard to write, assignments got lost, books weren’t brought home from school.  His classmates were still very kind, but party invitations quit coming.  At recess the boys and girls stood around in groups and talked, while he still wanted to play in the sandbox.  But he liked school, and he used to smile and wave when I dropped him off.  When I picked him up to take him home, he’d run into my arms and squeeze me tight, big enough and tall enough that I’d have to tell him not to squash me.

By junior high, things were changing.  He’d been out of special ed for years and was now in honors classes.  The work itself wasn’t the hard part – it was sitting still in class and not blurting out the answers, and not telling the teacher she was doing it wrong.  Changes to assignments drove him through the roof and suddenly girl classmates seemed very different than before.  But homework was easier and he could do it himself.  I got fewer telephone calls from the school and while I was glad he was doing well, suddenly I knew I was starting to lose my window into his life.  I began making sure I got my hug each night when he went to bed because I knew then that hugging time doesn’t last forever. 

He’s been in high school a few years now.  Grades come easy to him and homework always gets turned in – I never even see it.  His teachers stop me when they see me, to say that though he still has some rough spots, he’s really doing great.  He’s got a few friends who call him to come over – for Halloween parties and camping and to hang out in the swimming pool.  I drive him over and drop him off, then go on my way, no longer having to hover just to keep him alive. 

When I look back at where we came from, I am amazed.  To tell you the truth, there were times I didn’t know if we’d make it.  It wasn’t easy – those hours spent at the homework table, pouring out more patience than I knew I had, trying to come up with one more way to explain whatever my son was struggling to understand.  Those times at school when I had a sobbing child in my arms and a teacher nicely requesting an immediate conference.  And yet those aren’t what comes first to my mind when I remember those years.  It’s my son sitting in my lap, handing me “Green Eggs and Ham” to read for the tenth time that day.  And house paint dripping from his fingers after he’d gone into the bucket up to his elbows.  And the sweet little face filled with curiosity when my boy brought his latest treasure to share with me.

I look at the great, hairy, soon-to-be-a-man in my house and I can’t even tell you how he got here.  He’s more capable than I ever thought he’d be.  From where we are now I can see a future where he’s more secure and happy than I ever imagined.  From holy little terror, to a mellow young man – how did it happen? 

I don’t know.  But I feel blessed to have been here while it did.

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Back to School: Pencils, Notebooks & Prozac

It’s back to school time and you know what that means.  Searching the stores for just the right backpack, sniffing dry-erase markers in the school supply aisle to find some that don’t smell like jet fuel, and dragging your kid through the shoe store looking for sneakers that don’t squish his toes or cost more than your car payment.  Ah, don’t you just love the smell of school buses in the morning? 

It’s all worth it though, right?  Because as much as we love our sweet little darlings, we’ve spent most of the last three months within twenty feet of them and if we have to hear one more argument about who left the TV remote where the dog could get it, or why they should get more time with their nosed pressed against a TV screen/computer monitor (because apparently six hours a day of video games is not enough and besides, sunshine is evil) our brains are going to melt and run right out our ears.  We love our children, but by the end of summer we find ourselves driving by our kids’ school looking for signs of life and fantasizing about five minutes of peace and quiet all in a row.  Is it any wonder that we’re willing to pay three times the going rate for stationary supplies if they’re covered in cartoon characters just to get our kids excited about school and out the door? 

But for a lot of us, the feeling of giddy joy the thought of the school bell ringing brings is tempered with a feeling of dread.  Because if you’ve got a kid with Asperger’s/high functioning autism/similar (a kid with ASRD – Autism Spectrum and Related Disorders), you know there’s a good chance the beginning of the school year is going to be a bit rocky.  By rocky, I mean perhaps getting a telephone call by lunchtime where your part of the conversation sounds like this: “Yes, this is Mrs. Zupke.  Yes, I’m his mother.  A problem?  In the teacher’s lounge?  The whole cake?  Dry cleaning bills for how many teachers?  Yes, of course, I’ll be right down.”            

In short, you’re worried.  The first few weeks of school haven’t always gone smoothly before and you’re not sure they will this year.  In the past if your child had a great teacher, you’d done a good enough job of prepping him, his medicines were in balance, and he was willing and able to keep it together, the school year may have gone well.  But that’s no guarantee this year will.  What if the teacher doesn’t like him?  What if she doesn’t know about autism?  What if the other kids are mean to him?  What if he gets anxious or frustrated or confused and has a major meltdown?  What if he has a hard time at lunch?  What if he can’t keep up with the note taking or abstract thinking or homework required for the class?  What if one of the hundred other things you can’t anticipate or prepare him for happen?  What if?           

Back to school time can be really hard on parents of ASRD kids.   It can be hard on our kids too.  Over the summer everything has changed and they can have a hard time adjusting.  “I hate this new teacher!  She wants me to do my math homework this way but that’s wrong!  Last year’s teacher told me to do it the other way.  And what’s with this symbolism stuff in language arts?  The teacher keeps asking me which part of the story shows that the character is sad but the story doesn’t say that, it just talks about sunsets and darkness and stuff.  If the author meant he was sad he should have said so.  And the kids in my class are so mean!  Last year they all liked Pokemon but at recess today when I showed them my new cards they told me I was a stupid baby.  And I don’t know which bus I have to get on to get home.  What if I get on the wrong bus?  Will I get lost?  Will I have to sleep at the bus garage tonight?  Which bathroom am I supposed to use this year?  The air conditioner in the classroom is so noisy.  When is this stupid day going to be over?!?”           

The beginning of the school year isn’t always easy for your child’s teacher, either.  She spent the summer getting her lesson plans together and figuring out how to teach to state standards without boring her students into puddles of goo.  When she arrived for the first day of school her mail slot held seven messages from concerned parents, reminders for a grade level meeting, a note telling everyone to ante up for the coffee fund, and a memo from the principal stating that two more students have been added to her class and it will be a week or so before enough textbooks can be found.  In the few minutes she had before she opened her classroom door and met her new class, she double checked her seating chart one more time.  Kid with ADD near the front to reduce distractions.  Check.  Kid with ADHD in the back so he can fidget.  Check.  Kid with bladder difficulties near the door.  The twins on opposite sides of the room per mother’s request.  Kid with ASRD in the front row, on the end so he’s away from the fan and there’s room for his aide and he’s not near the class pet because he thinks guinea pigs stink and he’s not by the solar system poster because deep space makes him nervous.  Check.            

An hour later the students are in the room, introductions are done, and the first assignment announced.  Twenty nine kids have their heads down and pencils moving, busy writing paragraphs about what they did that summer.  One child is scowling at the teacher, teetering on the edge of a meltdown as she tries to explain nicely for the fourth time that writing “I played video games,” over and over does not count as a paragraph and surely he must remember at least one other thing he did in the last three months.  She smiles as she looks at the clock and realizes it’s a very long time until June.

It would be nice if any of the pretty back-to-school supplies offered up by stores could solve the problems ASRD kids, their parents and teachers face each year – that if we just bought the right pencils or notebooks then our children would slide easily into the new school year – no fuss, no muss.  But it doesn’t work like that.  Getting acclimated to a new school year is like running sandpaper across a knotty log.  It’s hard work at first.  Eventually though, with a lot of work and a lot of care (and a little swearing), some of the bumps in the classroom routine even out and everyone can relax.  The knots in the log don’t go away; there will always be a few hard spots.  But hopefully with patience, persistence and familiarity, the knots are smoothed out enough to get rid of the splinters while letting the wood’s quirky beauty shine through.  Yeah, our kids aren’t easy – but they’re worth it.

So, hang in there!  I know the start of school isn’t easy, but by Christmas things will have settled down a lot.  Kids, teachers and parents will all know each other better and hopefully will have figured out how to make things work.  Until then have patience with each other, bring chocolate to all your parent/teacher conferences, and take your kid out for ice cream.  It really will get better. 

– Cassie

P.S.  This blog post is dedicated to Brynn and all the other parents out there who spent the last few weeks nursing a stomach ache because you’re worried about the start of school.  You aren’t alone!   We’ve all been there.  It gets better, I promise.

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