The Honeymoon Is Over

One week.  That’s all it took.  One week of “ok, this summer thing is going to be all right” – as we all kind of got to know one another in that full-time summer kind of way.  We did ok that first week – kind of like when you’re getting to know a new friend, and you are a bit overly polite and nice about the little stuff.  Sure, I can make pancakes for everyone at breakfast, and then make 3 different lunches based your own personal favorites or I can tolerate a few too many episodes of “Mickey Mouse Clubhouse” – even though it’s my 11-year-old watching them and not the 6-year-old. 

One week – the relative harmony lasted.  My friends, the honeymoon is over. 

Here’s the deal – as with everything in my life, I recognize that some of our challenges are autism related, and a lot of them are just life – and frankly, I don’t know where the line is drawn.  It takes about 30 seconds on Facebook to know that I am not alone, and that many parents are having moments of summer ugliness.  That said, autism is that extra component that takes the typical and often pushes it over the line in the sand – and so for me, the honeymoon is over and the “for better or for worse” kicks in. 

So, what’s so challenging?  Elliott has virtually no independent leisure skills, and because of that, if I am not 100% diligent about keeping him occupied every minute of the day, his choices include things like irritating Henry & Ada, looking at and obsessing over store receipts, asking me the exact same questions over and over again all day long – quite literally hours and hours, and/or sneaking Oreos & other sugary snacks that cause him to be even more fidgety. 

This can make family time very challenging for us in a number of ways.  While Henry & Ada both enjoy movies and hanging out together time, Elliott does not have the attention span nor the ability to comprehend a full-length film yet, (except “Toy Story 3” which he has memorized in its entirety).  Especially when Tom & I are tired – like after a long day of activities when everyone is exhausted and just wants to watch a movie – that’s when E’s difficulties seem most pronounced.  As someone who loves movies and loves sharing my old favorites with my kids – this makes me feel sad.

For 7 ½ years, Elliott had a home-based therapy program to help him in a myriad of ways, and believe me when I say that the progress he made was life-changing and remarkable.  I know that without a doubt he will have a better future because he was able to accomplish so much in his home-based therapy program, but as a Mom, I always want more for him. 

We worked on so many leisure skill programs during his time in therapy that I could fill my basement storage room with the paperwork (and for the most part, have).  At one point, he was even up to 2 hours of sustained activities – granted this was with a very structured list and a big “reinforcer” or prize at the end.  I had always hoped that with the multitude of activities/experiences we have exposed him to, that he would begin to naturally make those choices on his own at some point.  And yet, for Elliott, this continues to be tremendously difficult and elusive. 

It’s not that he dislikes everything – frankly, if I work through the tantrum of asking him to do Legos, Wii, a word find, play a new game, etc., he will do it, and usually even enjoy it after he fights it – but it’s so much work every single time that it’s exhausting.  Sometimes, I tire of the battle, and as a Mom, I feel guilt about that because my son needs me to forge ahead even when it’s hard. 

Even more challenging for us is that when Elliott & Ada spent a lot of time together, Ada’s challenges re-emerge and she tries out some of her less than typical behaviors that for the most part had been replaced by more typical or natural behaviors.  Things such as toe-walking, babble talking, flapping her arms, sing-song voice (prosody issues), jumping & climbing objects, etc. 

While in May, Ada had virtually none of the challenges just mentioned, and is registered for Kindergarten in a typical classroom because that’s what the school district recommended after watching her in her preschool setting and having no concerns about her ability to fully function in a mainstream setting, now, just a few weeks later, I’m certain they would have concerns.  Lord knows I do. 

That’s hard to even type – it is detrimental for my youngest child to spend time with my oldest child because just being together causes regression for her. Even more challenging is the feeling that while Ada is still receiving therapy services, Elliott is not, and while I get why that is, there is a piece of me that feels like we are helping her but not him even though he needs it more.  It hurts. 

And then there is Henry.  When the constant bickering begins, he retreats to his room, and his computer, and some days I’m so busy, sad or overwhelmed by dealing with the chaos, that he gets almost no time or attention at all.  The other day, he walked into my room, and I took one look at him and started to cry.  Where did his childhood go?  In so many ways, it feels lost in a sea of autism, and I missed too much of it because I was overwhelmed or pulled in a different direction.  That’s just not fair, and I’m feeling crappy & guilty about that.

And so it is that the honeymoon is over, and the hard works begins.  Yesterday, we had a chat on the red couch about our goals for the summer – and though the trio is not thrilled, and we have much to refine, we are all going to work on some things are that not easy for us.  Each of us needs to work on trying new things, and doing things in a new way.

I own that I’ve been too overcommitted of late, am stuck in a bit of a sad place, and need above all to work on my patience.  Patience has never been my strength, and with 3 kids, 2 on the autism spectrum, my kids need an endless amount of patience. 

And while I have many flaws, one thing I’m not afraid of is sharing with my offspring my weaknesses.  I hope that by owning them, and committing to work on them, and asking for their help, that I can make a little progress this summer. 

So, maybe, just maybe, if we all help one another, by the end of the summer Elliott can have a leisure skill that he chooses on his own without reminders, Henry can emerge out of his man cave to share with all of us his plans to build his own computer, and Ada can dazzle us all with her “Kindergarten ready” prowess.  Heck, we may even find a movie (not Toy Story 3) that all of us can enjoy.  Most of all, when Dad walks in the door from work, we might all be having fun together rather than kids yelling and me dreaming of a mojito (ok, my dreams of mojito’s are staying – just sayin’). 

Dream big, right?  That’s what for better or for worse is all about. . . .


Birthday Greetings & Rodents

Ada Grace is 6 today!  Wow, how did that happen . . .

So, this week has been pure craziness.  Tom & I (thanks to the kindness of an old friend) were able to spend a few days in Las Vegas last week.  Having had a pretty crazy & stressful year thus far, it was beyond fabulous to have a few days to watch the Bellagio fountains and drink mojitos.  So fun, and such a treat.  That said, we returned last Friday night, and it has been constant, non-stop activity since. 

Planning for summer activities & camps, getting paperwork where it needs to be, filling out a myriad of forms, scheduling tutoring sessions, activities that don’t conflict for all 3 kids, and having my annual panic attacks about whether we, as a family, can survive summer vacation intact.  (Normally, I would have started my summer break panic attack last week, but Vegas and mojitos delayed it a few days).  Tomorrow is it – 3 p.m. marks the end of school and the beginning of – well, who knows what at this point.  I’m going on about 3 hours of sleep all week after late night paperwork, dinner with some old friends and late night visits from my pal, anxiety.  Oh the joys of parenting . . .

Last week, I had great intentions of writing a fun little story about how Elliott’s unique patterns during lawn mowing made me think about autism in a new way.  He chooses really interesting patterns and odd ways of approaching lawn mowing, but in the end, he gets the job done, and really, that’s what matters, right?  Sometimes I let myself get caught up in doing something the “right” way, whatever the heck that means, rather than focusing on the important stuff, and allowing him to get there in his own way.  That said, the story has yet to be written as, let’s get real, after my 2nd amazing mojito, I canned that idea in lieu of sitting by the pool reading a book that had nothing to do with autism.  And I’m glad I did. 

This week, Elliott made a particularly unfortunate choice, and it has my anxiety about summer reaching some new levels.  I’ve wanted to write that story all this week, but frankly, I haven’t even had time to wash my hair let alone sit down and throw together the words that will hopefully help me work through some of that ugliness. 

But today, I’m putting all of that other stuff aside, because my baby girl is 6 today, and as much as this blog focuses a lot on the squeaky wheel (here’s a hint, his name starts with E),  this is her day, and we have so much to celebrate. 

Not even 2 years ago, Ada had no idea what it meant to have a birthday.  While other little girls were choosing party dresses, and Princess themes for their parties, Ada had very limited language, and no concept of what having a birthday party meant. 

While she’s never had to experience the severity of challenges that her brother has, it was no less painful to visit her preschool classroom in the very beginning and see how socially engaged and conversational her peers were, and know that she would struggle with these skills that come so naturally for most.  Maybe I worried even more for Ada than Elliott because the girl thing is just different.  Girls just care more about the little things – all the nuanced details that often go unnoticed by the boys.  While we can visit a park, and Henry will pair up with a friend or two for an hour or more, when I ask him who his new friends are, he almost without fail will tell me “I don’t know their names, but they are awesome”.  This just does not happen with girls (yes, I’m generalizing, but I think you likely get what I mean). 

The last couple of years have been filled with ups and downs for Ada.  Her neurological testing at the Univ. of MN provides a mixed bag report – fairly typical language & IQ scores, but at the same time she licks their door knobs (something she’s never done anywhere else – wth?)  Just perplexing.  We’ve had months of great gains, and then heart breaking steps backward as we struggle to turn things around. 

During summer and holiday breaks, it’s been terribly challenging to watch her progress diminish and even regress when she spends a great deal of time with her brother.  They feed off of one another – and when he makes odd noises and body movements, she does too.  Other times, she excels, and often, Tom & I can go days and think, wow, she seems so typical.  Then there are times that she gets “the look” from people in public more than her brother does because she is so active, climbing and jumping on tables at Starbucks, and unable to wait patiently in any line.

But, just when I was preoccupied with E’s transition year to public school and the challenges he’s faced (and continues to face), Ada surprised me.  The last several months, she has been in a pattern of crazy, accelerated growth – both academically and socially.  She will be starting Kindergarten this fall in a typical classroom without assistance, and is excited about it (as are we!).  She gets together with her friends from school, and I find myself realizing, they are remarkably similar in their topic choices and their snarkiness (how awful the rules are in their respective homes, what songs they like (Kelly Clarkson ranks high currently), which boys are the “good” ones at preschool – a rarity of course – and what new gymnastics moves they like, etc.). 

For the last week, she has been filled with excitement about her birthday.  She changed her mind about 30 times before settling on a party at Chuck E (Good Lord, 3 kids, and I thought we had escaped a Chuck E party, only to get sucked in for our last child – man, she owes us for this . . . ).  She was beyond excited to go to the store with her brothers and choose her birthday cake (Spiderman – no, she’s not especially feminine, but I kind of dig that about her).  She has been telling everyone – including the crabby guy at the post office – that it’s almost her birthday, and shares her news with the swagger that only an almost 6-year-old girl can do.  We baked cupcakes yesterday, and she frosted them with bubble gum flavored frosting and sprinkles with precision and care.  I didn’t even care that she ate 3 in one day! 

This morning, she woke at 6 a.m., bounded into my room, and woke me up to ask me if she had grown taller overnight (she is intent on gaining an inch or so to be able to ride on her favorite roller coaster), and announced in her proudest voice “I’m the birthday girl today”!  I took her out for lunch and we got a new outfit for her party, and she had fun doing it!  Not to mention that her outfit, while not traditional, is so decidedly Ada that it makes me smile just as I know she will when she poses with her favorite rodent tonight. 

So today, we celebrate Ada, and the fact that Ada is excited to celebrate Ada which is the best news of all!  When I think about how far she has come, and what she has accomplished these last six years, I know with every fiber of my being that she is going to be ok – a bit spirited perhaps, but decidedly ok.  Sure, there will be bumps in the road – and we’re likely to have several “Mom free zones” as we did when she got mad at me for suggesting we put away the flannel pj’s the other night, but with every day that passes, Ada is becoming her own woman, and it’s just so amazing to witness knowing where we’ve been. 

Oh what a wild and wonderful journey this last 6 years has been . . . I can only hope that Chuck E is ready for this!