Do you ever wish your gift from God had come with a gift receipt?
Do you ever wish your gift from God had come with a gift receipt?
I have pictures, but I can’t find the cord to connect the camera to the computer. I will have to post them later.
Christmas was nice…very nice.
Hank loved his Christmas tree and the singing/hoof stomping horse that John found at the dollar store. The bop bag was also a big hit. He likes to lay on it, and he finds it pretty entertaining when other people hit it. The gear toy is a bust. He keeps taking the gears off and spreading them around the house. He got Spongebob bedding from my mom and my sister, and his new Bobbed out bed got a big smile out of him.
Dagney made out like a bandit. Lots of art stuff (Grandmama put one heck of an art box together), clothes, games and a Wii. John and I are also very much enjoying the Wii.
(John and I had a very funny discussion on what a Wii Porn game would be like. That was good for big laughs.)
Hank has been entirely off his supplement regimen for the holiday. By his own choice, not ours. I can’t get a thing down him other than the supplements in liquid form. He has actually been fairly calm as a result of not getting all those detox provoking supps. He’s done some pretty interesting things as well. I feel like I’m at a crossroads in a way with his treatment, but not really because I don’t feel like stopping the protocol is a viable choice. Possibly a bit of a slow down…possibly full speed ahead…a lot of it depends on him really. We will see.
Dagney has also been doing some interesting things. It seems that she has decided to take more of an interest in being a big sister. Dagney has complained about Hank a lot. He breaks her stuff, makes messes in her room, generally gets in the way a lot, steals our attentions away from her. I get it, but it hurts my heart to hear her say some things (even though much of it could fall under the category of normal brother/sister stuff, I suppose). So, it has done my heart good to see her trying to interact with him more in the past week, following him around, playing in his room.
She actually tried to get him in bed the other night. John and I watched on the other side of the closed door as the light flicked on, then off, then back on. We heard Hank laughing and Dagney trying to coax him to bed. We peaked through the cracked door to see Dagney lightly body slamming Hank into his bed and then trudging back to turn the light off with an audible sigh. It made my outside laugh and my inside hurt just a bit at the same time. We praised her highly for the game effort then we all went back to playing Super Mario on the Wii.
Christmas shopping for Hank was pretty depressing. John and I found ourselves standing in the middle of Target with very puzzled looks on our faces, totally at a loss for what to get him. I feel like the toys we buy for him are getting simpler and simpler every year. It sucks to shop for my 4-year-old in the toddler aisle.
We very briefly considered finding a huge cardboard box and filling it with hangers. Then we discussed how someone really should come up with a hanger with flashing lights on it or one that played music.
You see, about the only thing that Hank has been playing with for a while now is plastic coat hangers. He freaking loves them. He stacks them neatly. He throws them around to form chaotic patterns. He jumps up and down while holding them to his face so that they click against each other and hit against his belly. He plays with them in the bathtub. He sorts them by color on occasion. Every now and then he will walk around carrying about 25 of them looped on his arms. It’s bizarrely cute.
The only other toys that interest him right now are super-stimtastic things that sing, dance or light up. Being the holiday season, these things have come out of the woodwork. Dancing Christmas trees, singing snowmen, a reindeer in a rocking chair that plays “Grandma got run over by a reindeer”. Ironically, it’s his grandma that has that last one.
So, there we stood in Target, the emotional quagmire threatening to pull us under. We took a moment to acknowledge how much the situation sucked and we moved on, determined to find something that would make our special kiddo happy. And we did. We hope. Here’s what we got.
A blow-up ball tent shaped like a car, a big fire truck with all sorts of buttons for noises and lights, a toy with gears that turn and…a singing Christmas tree. Yes, it will be Christmas all year round in the Galt house! At least until one of us cracks and buries the singing tree in the backyard or runs over it with the car.
Joel would probably have been overjoyed to open a huge box of hangers, but we just couldn’t do that.
This is my favorite version of a Christmas song. It is done by Crash Test Dummies. Yes, the guy’s voice is really odd, but listen…and wait for it…
Isn’t that wonderful?!! It makes me teary every time I hear it. Just gorgeous.
I have been thinking further on the expectations game. As noted, I have decided to unfetter myself of the crazy high expectations and just go with the flow. Now, this does not change our approach in any way. Do not label us laissez-faire. We will be working, striving, figuring out how to circumvent the many brick walls that we will run into, all on Hank’s behalf. Never doubt it. This is more a move toward acceptance and practicality. A change in viewpoint, backing off just a bit to observe and process.
So, we were at church Sunday night. We don’t attend as regularly as we should. We often keep Hank at home because having him in the church service is an impossibility and I hate to leave him in the nursery all the time. But, we all went this night because Dagney was in the kids Christmas musical. I watched the dress rehearsal because I was expecting to have to chase Hank through the halls or stay in the nursery with him during the actual performance. However, he was perfectly content in the nursery, so I gave the workers my cell number with instructions to text me if needed and to keep him away from the animal crackers. It was very nice (weird, actually) to be able to sit with my husband and watch our oldest perform.
Afterward, there was a church social. To put it in perspective, the last event of this type that we attended was a Thanksgiving dinner a few weeks previous. We had to put Hank in a highchair to contain him, and once he could no longer be peacefully contained, the adults took shifts following him around and keeping his hands out of the myriad of food dishes that were on display, our version of gluten/casein keep-away involving lots of quick side-to-side shuffling to block his path to the pigs in blankets (pigs-in-blankets?…pig-in-blankets?…surely all those little wieners don’t add up to more than one pig). Quick sum up, he ran all over the place squealing like a pig (possibly in a blanket), and I broke out in a sweat….and hives. I was glad to leave.
But, on this peaceful night, it was different. He was different. Possibly still enjoying the afterglow effects of sitting in church with my husband, I was different. I got a plate for myself and Hank and sat down. I didn’t get the highchair, which is from the ’70s and makes me consider a tetanus booster just looking at it. When John returned from the bathroom with Hank in tow, I put him in a regular chair. Heck, why not! Maybe he will stay. I was feeling adventurous.
Well, the kid stayed…for quite a while, relatively speaking. He tried to scam food off my plate and didn’t complain when I shut those efforts down. I relented and gave him some Sprite instead of the supplement-laden drink that I had been pushing for much of the day. After a bit, he got out of the chair with a sly look in my direction. He didn’t run, didn’t even get beyond three feet from the chair. I gave him a sly smile right back and patted the chair with an instruction to sit back down. He did. (He did!!) We did this a few more times. He responded quickly and appropriately every time with lots of eye contact (and obvious scheming going on behind those baby blues).
We continued the game for a bit, with him sitting at the table for the majority of the time. We all got to eat in peace. The chase-after-Hank rotation was not necessary. I wasn’t suddenly breaking out and itching in places that are inappropriate to scratch in the middle of a church fellowship hall. It was awesome! He did start testing the limits after a while. I knew that he would soon be on the move when he started laying down on his back on the floor, dry humping the air and laughing like a hyena. But, he was still playing the game with me during all that, he was still close to the chair, he was still looking me in the eye and waiting for some response from me. Dry hump away, little buddy!! I was so happy about his behavior that I didn’t care that he was crossing over into goofy land. Heck, I decided to go with him. I gave him a good tickling and gave him leave to run. Someone followed him, and the rest of us remaining at the table marveled at how well he had done. I left smiling and not scratching.
I was tumbling this whole experience around in my mind last night while laying in bed, and I realized that there was a whole other expectations game to consider. The game of low expectations. Not giving my kid enough credit. Not allowing him the chance to shine. On a whim, I plopped his happy ass in a regular chair. I didn’t confine him. And, he made me proud. I have to remember to give him a little more credit a little more often.
We all have expectations for how our lives will unfold, what our stories will be. I am a smart person. I graduated high school valedictorian and skated through college with relative ease. I married a really smart guy with a sharp wit to match my own. Naturally, I expected we would eventually hear the pitter patter of little genius feet…possibly the next Einstein or Salk. Well, maybe not, but I expected some smart little rugrats.
Now, I did have my fears. My younger brother had leukemia at the age of 2 and was debilitated by a rare brain damaging side effect of his treatment. He went into remission, but he was left developmentally and physically disabled. Then at the age of 8, he developed a brain tumor and died despite several surgical interventions. How did my parents deal with such grief and still maintain their marriage, their family, their faith? THIS, I did fear. This was real to me.
What was entirely out of my reality? Of all the things that could happen to one of my children, what was the most far afield? Out of sight. Out of mind. Didn’t even exist for me.
Our daughter is everything that we expected. Our son is something entirely different. He is a mystery wrapped in an enigma. He doesn’t conform to expectations. He has autism.
So, expectations change, right? We roll with the punches. We set new goals. We develop a plan. We will implement this diet, this protocol, these services. Surely, everything will work out. Surely, our son will be just fine, some semblance of normal, in a year or two. Surely, he will be talking soon. Maybe he will even lose the label. These were our new expectations.
Well, we were just a tad unrealistic. Not that it doesn’t happen. Some kids respond significantly, improve rapidly, find the elusive “WOW” factor. However, it hasn’t happened for our beautiful boy. There has been improvement, but it has been slow and plodding. He is a tortoise in this race. We can only hope for the same winning outcome.
So, within the confines of our original expectations, birthdays only served to put a spotlight on our epic failure, increase our sense of doom. The small progressive steps and gains couldn’t be fully appreciated because they didn’t measure up. The tick, tick, tick of the passage of time became the soundtrack for our lives because he should be doing THIS by THIS age. So said our expectations anyway.
It’s damn depressing, this expectations paradigm. This box so many parents close themselves up in. It’s hard to avoid it, but it is soul crushing if you allow yourself to be trapped in it.
For that reason (because I value my soul), I am DONE. No more expectations for me….at least no more of those short-term, time-sensitive, soul-sucking black holes falsely labeled as hope. We will continue to improve the life and health of our baby. We will address his gut issues, his methylation deficiencies, his viral and bacterial load. Inevitably, he will improve, it’s just not likely to be on any predetermined timeline. I am determined to enjoy every incremental improvement, whether large or small, whether quickly gained or laboriously attained.
We will maintain our hope for his future. We will have faith in our efforts and the decisions we make. We believe that he will talk. That he will be happy and healthy. That he will be okay. These are my long-term expectations. I am not putting a timeline on them, and these expectations are bound to be redefined and molded by the progress that he makes.
Whatever happens, we love and treasure him, and we will love the person that he becomes. That is an expectation that I don’t mind having.