Not so Merry

Ok – I’m just going to say it – I’m cranky, totally lacking in holiday spirit, and just generally unpleasant.  Heck, I can’t even gather up the festive energy to pen our annual Christmas letter, which is usually one of my favorite holiday activities.  Our tree is up, but Henry is now too cool to decorate it, Ada (aka “Bob the Elf”) dances so much that little actually gets on the tree, and Elliott tried to convert to Judaism for the 2nd year in a row in an effort to get out of tree decorating (this suddenly goes away when the tree is done & he remembers his passion for bacon).  The tree is so blah this year that the cats have not even tried to climb it.  I’m hard pressed to feel the “fa la la”, and just can’t seem to break out of the funk.

There are a host of reasons besides the usual ones for my foul mood.  Lots of unexpected & expensive repairs to vehicles & household stuff lately that is never fun, and even less so this time of year.  Plus news of friends and family experiencing serious health challenges that are difficult journeys for everyone involved.  On top of all that, the weather here in Minnesota is ridiculously cold – much more so than usual.  Despite our reputation of being subzero 9 months out of the year, we usually don’t see ugly cold until January/February, and this year it went from “all right” to “hell no” in about 24 hours flat.  So – no fresh air as it’s dangerously cold – & no sledding or outdoor activities for the trio which often leads to a lack of peace in the house.  Blah.

The Red Couch has been relatively quiet of late, except for my comments about the Autism Speaks/Suzanne Wright drama of last month, I’ve not really been sharing updates about the trio.  There is some good news (saving so I can get the ugly stuff out), but know that 2/3 of the trio are doing really well in school.  Any guesses on the 1/3?

If you guessed my friend Elliott, the 13-year-old-puberty-stricken-middle-schooler, then you would be correct.  Friends, it is not pretty.

The beginning of the school year went above and beyond what any of us expected.  He loved the larger school environment, the moving around from class to class, finding his way around a new place, new interactions with people.  He seemed to embrace the new expectations he faced, and made it his mission to get to know lots of new people at the school including the office staff, custodial staff, the lunch folk, and of course, his Principal.  Sometime in October, the honeymoon ended, and it’s been pretty ugly ever since.

Sadly, the hardest part for me is that I don’t know for certain what is really behind the challenges he is having.  He became a teenager in October, and now tells me (and almost everyone he meets) that he’s a big guy and not a kid, and does not feel compelled to follow rules that kids need to follow.  While it’s important for Tom & I to discuss rules & expectations with him, I’m not so certain that everyone at Walgreen’s feels the same way.  Let’s just say that puberty is playing a big part in this ugliness, and my guess is that it’s going to get worse before it gets better.

When we meet new people, especially others from the autism community, and I share the fact that 2 of our kids have autism, the first question most people ask is “are they high functioning?”  or “where are they at on the spectrum?”  That’s a hard question to answer, and even though I don’t necessarily like it, I’m guilty of doing it from time to time as well.  It’s just a way to (sometimes) quantify quickly what’s going on.  But I don’t have a good answer for that question when it comes to Elliott.

Ada is high functioning.  She has her challenges to be sure, and as she progresses through the elementary grades, the social stuff is likely to become more difficult for her, and we’re doing  our best to prepare for the coming adventures.  But, she is academically average for First Grade, is very imaginative (she is “Bob the Elf” more often than Ada during December), has friends (mostly boys), and though she benefits from extra help/practice on some of her skills, she is likely not a kid you would pick out of a crowd as being on the autism spectrum the majority of days.

For E, there is no simple answer, and sometimes my answer changes depending on the hour.  He is someone that is noticeably different upon meeting him, but often in the best of ways.  He’s friendly, loves chatting with people, and is extremely outgoing, but also has many difficulties with social boundaries, is not super conversational (very little back & forth with E), and has bouts of anxiety and a wide range of emotions that show up throughout his everyday life.  Some days, he’s really “on” and gets compliments for having great manners, and being super friendly & helpful, and other days, I’m herding a screaming 13-year-old out of the grocery store because I insisted on the “wrong” check-out lane, or he would not give the person in front of us privacy as they try to swipe their credit card.  Does this happen less and less?  Yes, thankfully, but believe me even one episode every few months is not so fun – the attention a 5 or 6 year-old gathers from passers-by having a meltdown at Cub is one thing, but 13 is a completely different ball game.  Imagine that some people just don’t get that checkout line 8 is far superior to line 7, even if there is no line in 7?

So that’s how the autism piece affects my buddy as a now 13-year old.  It’s different than it was when he was younger, and I’m amazed to learn from him how he views the world and his take on social situations, but some days are still much more challenging than others.  That said, the learning disability stuff is what’s really got me down of late.

Here’s the deal – not everyone that has autism has learning disabilities, but Elliott does.  Heck, some people with autism are brilliant, some are academically average, some are severely disabled and everything in-between.  E man has always had “splinter skills” which means his academic strengths and challenges are all over the board and vary dramatically.  He has an amazing memory, has been able to spell well above his grade level for years, has average math abilities (except for word problems) and can read fluently at grade level.  However, his ability to understand what he’s reading – his “reading comprehension” is severely delayed – he’s somewhere around 2nd grade right now.  The effects of this disability are far reaching, as it impacts almost everything in his life and certainly every aspect of middle school.

I think our challenges started when the newness of school wore off, and the expectations/work load started to ramp up.   Sometimes, because his strengths mask his challenges (i.e. fluent reading but complete lack of understanding), it’s hard to know what he’s “getting” and “not getting”.  E has a history of not communicating well when he does not understand something, but acting out in other ways.  This fall, it’s been mostly calling teachers by their first names, reciting personal information about a peer such as his home address, and birthdates of his family members, making friends  very uncomfortable, and his newly learned skill – telling teachers no.  The week prior to Thanksgiving, things had become so challenging for him that he was basically pulled from every class (even his small group special education classes) and was working 1-on-1 with a para-professional the majority of the day.

Ok – truth.  It just kills me when I can’t figure out what’s behind these awful phases – it’s beyond painful as a parent to want to help your kid, and just not know how to do it.  Is it working in small groups in Science that’s setting him off because it’s different?  Is it that math got too hard, and he’d rather bug his friend than admit that he doesn’t get it, and hasn’t for a week?  Is it that American Studies is completely over his head, and he isn’t attending to a lecture format even though he’s not disruptive, and then has no clue what’s going on when we do homework or study for a test?

How much of this is learning disability & failure to communicate and how much is lack of motivation?  He’s famous for telling me “it’s just hard” or “I don’t like history”, to which I reply, in my stern Mom voice, something about how school is his job, and he should not expect it to be easy or to like everything, but he needs to do his best.  He’s a very capable guy when motivated and encouraged, but sometimes the gains come at a painfully slow pace.  Is he just giving up because things feel hard, or is it truly over his head?  I don’t know these answers, and that’s the hard part.  We want to hold the bar high for him, but not so high that he can’t reach for it.  We believe in him, and work hard to help him overcome obstacles big and small, but it’s not always easy to know how to do that.  Sometimes, things start to feel hopeless (like now) and I start to think “this is just not going to happen for him” and then, seemingly out of nowhere, something clicks and he “gets” it.

Lately, he’s been asking me tons of questions about college.  For as long as I can remember, he’s wanted to attend the University of Minnesota and be a Golden Gopher.  When we visit our friends at the University of Minnesota Autism Clinic for our annual neuro-psych evaluations, we can see some dorm buildings from their windows.  He’s long had one picked out that he hopes will someday be his.  These days, when he starts to talk about it, I have to excuse myself, because it’s been making me cry.  While I’ll always be his biggest fan and most ardent supporter, I can’t help but recognize that that dorm room is slipping a little bit more out of reach every day, and it hurts.  It hurts most because it’s his dream, and I hate that his learning disability will likely limit his life in more ways than his autism.  That just sucks, and it’s got me down.

Wow – that’s just too depressing.  Let’s focus on some slightly more positive stuff, shall we?  First, E has an amazing team of educators that care about him, communicate almost daily with us, and are creatively working on ways to increase his ability to participate (at his level) in classes.  We are lucky that E has such a caring, compassionate, and talented team, and we know it.  (I also speculate that E has likely been the cause of more than one staff happy hour – which I fully support and frankly envy).  Also – both Henry & Ada are (knock on wood) doing well in school and beyond.  Henry is speaking in 5th grade, has buddies, practices his trombone in preparation for what will likely be a festive yet fairly painful 5th grade concert tomorrow, and pretends not to enjoy the holiday music dance parties I’ve been throwing when things get too tense around here.  Ada is coming out of her shell more and more at school, has friends, is reading and telling time like a maniac and is once again embracing her imaginary alter-ego “Bob the Elf” almost daily.  Great stuff for 2/3 of the trio.

Yesterday, in my funk, I trudged off to Target with a list that Elliott made for me with a bunch of coupons for things like paper towels, Soft Scrub and M&M’s.  It was freezing cold, and all the holiday crap at Target just made me even more grinchy.  Finally, I found everything, and went to check out.  The young man (not someone we know, as E is usually up on all long-term employees) commented that I had a lot of coupons.  I told him it was because my son, who has autism, enjoys cutting out coupons and matching them up.  He looked at me, with a bright smile, and said “that’s a great hobby – I have some autism too”.  Maybe it was the way he so proudly shared his autism with me, maybe it was his Santa hat, or maybe it was just his sharing a “connection” to my buddy, E, but I left the store with a smile for the first time in a while, and even stopped for a Gingerbread Latte on my way home.

Maybe that young man’s Mom felt hopeless when he was in middle school?  Maybe what seems so insurmountably hard for E this moment won’t in 3 months?  Maybe he will live in that dorm, and maybe he won’t, but will find a place just as cool elsewhere?

No matter what, I don’t think I’ll forget that Target employee anytime soon.  His message of hope came along at just the right time.  And if E gets the chance to meet him, I’ll likely have his home address and birthday on my calendar in no time!  In the meantime, I’ll make Henry listen to more Amy Grant Christmas songs, and Bob the Elf can teach us some awesome dance moves!

4 responses to “Not so Merry

  1. Thanks again for telling your story. I read it with tears, smiles and hope. I know you have had a tough road and some days are tougher than others, but as someone who fights her own battle everyday, I do know one thing. Good days will be here again. Hang in there sista! and keep telling your story, it inspires people.

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  2. I continue to be moved by your inspiring humanness:) Please, Please , Please keep sharing your truth Kammy. Sharing your vulnerability makes this world a healthier place. Thank you for making me slow down and see the beauty in this crazy journey called parenting :) You are amazeballs.

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  3. Hi Kammy,
    My name is Joan, my son Michael is 13, turning 14 and sounds very much like Elliott. He is getting very big and very strong now. And then adding teenage hormones to the mix is insane. I just wanted to say that our boys sound a lot alike and if you would like to email me, we could talk more.
    Sincerely, Joan

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