Autism, Christmas, A New Year, and Change

At the Tweed Santa Clause parade

    Our holiday season was so coo-coo crazy that I never got a chance to really sit and write about how Caleb did through it all. I might normally have written beforehand and speculated, or during and given a "how it's gone so far", but because this is coming weeks late I can give the, "this is how it went" angle!    

Caleb performing at his school concert. You might think he was the star of the show, but he was just reeeaalllly excited about singing The 12 Days of Christmas and wanted everyone to join in!

   Like I've mentioned, our holiday season was filled to the brim with activities, parties, visiting and the 'usual' Christmas fun.
   I almost feel as though I don't have a lot to say about how Caleb did because he did so very well! He even managed to get himself to the bathroom to barf into the toilet without help (that's a big step, especially considering we weren't at our own house at the time). 
   He enjoyed the parade without any trouble (getting frustrated by things such as the noise, the cold, the overwhelming amount of candy he gets but isn't allowed to eat right away). He participated fully and enthusiastically in his school Christmas concert (though he did stall out at first and didn't want to go on stage), he   sat with Santa and even told him what he wanted (a Chevy Cavalier...sheesh), as well as being so well-behaved (using a good voice volume, sitting quietly, being polite) at a "Christmas party" at the theatre where he got a treat, met Santa, got a present, and got to watch The Penguins of Madagascar. 

Caleb and good ol' Santee Clause

Decorating the Christmas tree

   Caleb helped decorate the tree, and even let his younger sister put the star on the tree even though that is usually his job. 

   There were, of course, road bumps along the way. Big group family photos were still a little hairy (he really doesn't like the idea!), he had some trouble with his sisters touching his new things and he would holler at them. He had some bad listening days, and days where he made bad choices. But overall, it was the best Christmas he has ever had, which is what I had hoped for. Forward steps, slow and steady, but forward. 

Caleb pushing his sister in the snow shovel

   Christmas is stressful. I know it's a season of love, of being merry, of getting together with family and friends, but it's a lot to get through!
   As a neuro-typical adult, I needed to be prepared, I needed to communicate my thoughts and concerns as they came along, I needed to process things as they came, and I needed some "normal", but I didn't get much of that. Truth time? I spent 15 minutes crying in the bathroom of the first place we went for a Christmas get-together because it had been such a blunder of a day and I fell apart!
  As a child with autism, a condition marked with processing problems, communication impairments, sensory difficulties, and the need for routine and sameness, Caleb had (and has) every right to not do well and to have many, many meltdowns!!!
   I had no excuses to be upset about anything during the holidays with Caleb chugging along and making the best of it all. 
   What a kid! What a new year we have to look forward to! Caleb is growing up, becoming more mature, and learning how to live life! He enjoyed Christmas! It's been 10 years coming, but he enjoyed the whole Christmas season and that makes me feel so happy! 
   He is still troubled, he is still struggling with the ins and outs of his autism, but he is just amazing! All those years of "torturing" him by ruining his schedule to go to see family for the holidays; I'm glad we did it! Perhaps I wasn't so glad at the time, but I am now.
   
   When Caleb was about 5 our paediatrician said to us, "the only real way to deal with autism on a day to day basis is with routine, routine, and more routine". She meant it, and I believed her, and it's true....mostly. Having a routine for people with autism is important, but at what cost? If we had said years ago, "nope, we can't go see family for Christmas because it'll throw off Caleb's routine (and he may have a meltdown and act like a crazed lunatic!)!", Caleb would not have had this amazing Christmas this year. 
   I know  every child and adult with autism is different, but I strongly believe a general parenting rule applies to raising all kids, and that is you start them off how you want them to go. Most kids don't naturally use manners, so we teach them. Why? Because we want to raise polite and courteous members of society. You can't suddenly say to a teenager-"say please and thank-you!" after never once asking them to do so.  
   We wanted a life with Caleb where he felt comfort in his regular, scheduled life, but he also trusted us when we were just winging it! 
   I rambled there for a bit about schedules, but I said it all to say this: on a day to day basis raising a child with autism can seem endless, hopeless, even pointless. You feel like you aren't making progress, nothing is getting better, and nothing will change. You deal with dirty looks, snide remarks, and having your child loose their ever loving mind in front of those bystanders who don't understand, and don't want to. 
   Then, it seems sudden, but you realize all at once that it isn't sudden, and things have changed. This change looks different for each family raising kids with special needs, but it comes. You see that the start you gave, the way you wanted them to go, is taking hold. We kept giving the message that said, "routine is good, but if it isn't there, don't freak out!"
   We dragged Caleb here, there and everywhere during the holidays, and he kept up! He had some lows, don't get me wrong, but we didn't have to leave any parties because he was falling apart. We didn't have to send him to a dark, quiet room because he couldn't handle the situation we were in, he didn't even get the least bit upset when he realized the Christmas dinner we were going to wasn't happening. In fact, that first place we were that I had my cry was a night Caleb could have easily fell apart. 
   We told him he would see cousins, and aunts and uncles, and none of those things happened (serious schedule glitch!). But, the dining room was set up for the following night (when the dinner actually was going to be) and Caleb walked in, he had his pyjamas on (as we had asked him to do), and I was in looking at the place settings and how nice everything looked. 
   Caleb came to me and said, "Caleb will to see his cousins???". And I realized that, even though Adam and I knew our scheduling blunder, we hadn't really explained to the kids the change. We just unloaded our stuff and settled in for the evening-without the party.
   Caleb stayed calm, he did what he was told. He ate the food we gave him, and put on his pyjamas. He must have known something was wrong, he must have felt how tense we were, he knew what we had told him would happen wasn't actually happening, and he stayed above it. He rose above it, really. 
   I see it. I see the change. If you are eye-ball deep in the exhausting job of raising kids, especially kids with special needs, take heart! Change comes, it's slow, it's quiet and careful, but it's there! Embrace where you are, but keep going too; keep working hard and a harvest will start to come in. The change you hope to see will come. 


xo