The Boy Turns Twelve

Posted on December 10, 2013 by simpleijustdo

Twelve?? Yes, twelve. I still can’t believe it. He keeps getting older. And bigger. And his voice keeps getting deeper.

When he was born, he weighed 5 pounds, 6 ounces, and he fit between my elbow and my palm (all snuggled, of course). When he was born, the nurses quickly nicknamed him “Red” because he was born with a full, and I mean full head of hair that they thought was red. It still looks red when it gets wet, but he has always been blonde. When he was born, he was a great eater.

About a month later, we almost lost him. He had a “malrotation of the intestine” which was not discovered until I questioned his pediatrician’s assessment of the fact that he was projectile vomiting across the kitchen and spitting up yellow. Only after we switched pediatricians and did an upper gi scan did they figure out he had this malrotation. And that he was hours away from being in serious, serious trouble. Immediately after the gi, they took him and told us he was scheduled for surgery in four hours. To this day, I’m glad it all happened so quickly. I didn’t have too much time to think about what could have happened.

After the surgery, he wasn’t allowed to eat. They wanted everything to pass his system to make sure the surgery was a success. Therefore, only sugar water was allowed in small amounts. I didn’t realize it at the time, but pictures from that time reveal him to be this tiny skeleton-looking baby. After three days, he was supposed to be clear, but he wasn’t. He ended up not being able to eat for six days. I was still recovering from childbirth, and there was no place for either of us to sleep there – only one recliner. So we took turns sleeping at the hospital. It was the worst kind of purgatory, being separated like that, praying for his recovery, while still in pain and bleeding myself (and having to pump on top of all of it).

Needless to say, he not only survived, but thrived, and soon filled out into a typically chubby, happy baby, who was still a good eater, still had a head full of blonde hair, but could no longer fit between my elbow and palm. He was growing, and he hasn’t stopped.

Happy Birthday to my Boy. He’ll never know how thankful I am he’s here.

Use Your Words

Posted on December 9, 2013 by simpleijustdo

Tomorrow is The Boy’s birthday (Just FYI – there will be another birthday related post tomorrow. Birthdays are a big deal). Today’s post is about verbalizing. The Boy is verbal. In fact, if he is speaking about interior dome lights in cars, he is downright verbose. But he is not always verbal about what he wants and needs, nor is he verbose when asked direct questions. This is fairly common with autistic kids. They can tell you every plot point of the latest Disney movie, but ask them to make up a story and you are met with complete silence.

The Boy has always been this way. When he was younger and Webkinz were a thing, he would receive a new one for his birthday or Christmas, and could not come up with a name. They were often named whatever the first suggestion I offered was.

Tails added to “the list”

He will tell you what he wants (in terms of toys, games, etc.) while in the store, when they are staring him in the face. This is why we came up with the strategy of taking pictures of them with my phone and putting them on “his list”. This helps us get out of the store without having a meltdown about not purchasing what he wants then and there. And you may be thinking, “Great! Then you know exactly what he wants when it comes to birthdays and Christmas, because you have pictures of them right there on your phone!” But often, he never speaks about those things again, and I am left to wonder whether he really wants those things, or whether he was just attracted to them at the time. Was it true love or was it just lust?

Therefore, I did a mental double-take last week when we were at the store last week, and he saw some fleecy sleep pants he liked. He pronounced, “Mom, you could get these for my birthday! I want these for my birthday! Take a picture!” He repeated some variation of these three phrases for a couple of minutes, and I think he was as excited as I was that he had verbalized his want for something specific for his birthday.

A couple of says later, I casually asked, “Do you still play with your Bionicles?” He said, “Yes, I do. You could get me a Bionicle for my birthday, too.”

It may seem like a small distinction, but it was huge to me. He has never before asked for something specific for his birthday, and he continually amazes me by making these small (but huge) steps toward independence.

Feeling the Love

Posted on December 6, 2013 by simpleijustdo

Last night, The Boy had his first band concert of the year, and played music he has had for about two weeks on his new instrument, the tuba. There was standing-room-only in the auditorium, and The Man and I watched from the back with The Boy’s grandparents. We heard him play, as he is the only tubist in the 6th grade band, and we heard him play well. And I was proud, listening to my boy do his best, and do it well.

It was a great concert, and after it was over, he was geeked, excited. Once in the car, he went right for his DS (a re-discovered love, as it has been in the bottom of some drawer for a couple of years), but was giggly and goofy. We had to pick up The Man’s truck, and he loves to ride in it with him, so I drove on alone for the few short miles to our house.

As the car started to climb the rise of the bridge over the Intracoastal Waterway, I began to tear up with emotion as I realized how thankful I am for all that has happened in the past year. Maybe it’s a little early for the annual retrospective, but it really has been a great couple of weeks. Things were getting a little dark there for awhile, but now The Boy is in a much better place, school-wise (and a GREAT band program, to boot!), I have a new job that I love, and the very best husband ever. And we’ve moved to a place where it reaches 70 degrees on the 5th of December, which also happens to be around the corner from the very best parents in the world.

Can you feel the love? I sure can. ❤

We’ve Come So Far

Posted on December 5, 2013 by simpleijustdo

When The Boy was little, haircuts were tortuous. I gave him one at home exactly once. Plopped him in his high chair, and it went OK, besides the fact that it took me two hours… After that, we went to the Fantastic Sam’s, or the Great Clips, or whatever was the latest one in the strip mall nearby, and he would scream and cry, and I just didn’t know how else to do it. Some of the ladies cutting his hair were lovely people. Others were less than lovely, roughly yanking his chin this way and that, easily frustrated by his inability to be calm and compliant. This was all before his diagnosis, of course.

Then I had an epiphany and we began to bring a milkshake with us, which kept him happy and distracted.

Nowadays, I don’t even have to go with him. Sometimes he goes with his Poppy, sometimes with The Man. He still isn’t a fan of the clippers, but he has come a long way since needing a milkshake just to get through it.

And when he’s done nowadays, he looks like a man. *sigh*…

The Man for The Boy

Posted on December 3, 2013 by simpleijustdo

This morning, The Boy’s transport van was ten minutes early. If you know nothing about autism, you probably still know that routines are king, and if you mess with a routine… Well, watch out.

I heard the first honk at 6:38am. The Boy had just decided he didn’t want to wear the pants we had chosen, but wanted to wear the blue ones. I frantically searched for the blue ones, found them, gave them to him and he said, “Their inside out!” I quickly turned them right side out, handed them to him and asked him to put them on, while I found a pair of socks to put on his feet myself. That done, I headed to the front door, opened it, and stuck out a finger (no, not that one, although I was tempted), to let her know we had heard her and were coming as quick as we could.

I returned to The Boy’s room, and told him to go put his shoes on. I grabbed his poptarts in a baggie, and his bookbag, and tried to hurry him out the door. “Where are my glasses?” he wailed. I set everything down, and went into his room to get his glasses.

She honked again.

Really? Did you think I didn’t know you were there? I already came outside in my robe to let you know we were coming, but you needed to honk again?

I gave him his glasses, gathered all of his things, and shooed him toward the door. “I need you to tie my pants! You’re not going to tie my pants?” I got him on the porch, gave him his things and tied the drawstring on his pants. I gave him a kiss and sent him on his way.

When I came in, The Man said, “Really? Why was she so early, and why did she have to honk twice?” Exactly. “You need to call them and tell them they can’t do that to him. He needs his routine, and they definitely don’t need to be honking like that.”

The Man advocating for The Boy.

Not just supporting me, because he knew I was a bit frantic and anxious from the situation the driver created (which he did, as well, asking more than once if I was OK), but actually defending and advocating for The Boy.

Exactly.

Agitation

Posted on December 2, 2013 by simpleijustdo

The Boy was agitated Saturday, it seemed like all day. Nothing was working right for him, he couldn’t find things when he needed them, and he was on edge. Everyone has days like this, but not everyone’s agitation could end up in a full blown meltdown, so I was also on edge as a result.

We tried to take it easy, and take him places he would enjoy. He particularly loves to go to dealerships with The Man and look at cars, and sit in as many as he can to check out the interior dome lights, one of his obsessions. While we were pulling in to the local flea mall, where The Man bought him a toy Town & Country van similar to the one that now picks him up for school in the morning, The Boy spotted a place that repairs cars, and sometimes sells used ones. He made us promise we would stop to look at the cars when we were done at the flea mall, and we complied.

When we stopped, I stayed in the car, as I usually do, because I am not obsessed with cars, and quickly become bored. The Man is fairly deft at handling The Boy and redirecting him when necessary on these excursions. But today, The Boy opened a car door, and The Man found a key in the ignition. It was fairly important to get that key back to the shop, so I carefully watched The Boy as The Man went inside. The Boy, of course, began to flit toward cars that I couldn’t be certain didn’t belong to anyone, because people leave their cars unlocked down here.

He chose a Saab sitting next to the shop, and when he opened the back door to see the some lights, I saw a jacket and a tennis racket inside, and realized this was someone’s car! I carefully steered him away, trying to explain that we couldn’t go in that car because it wasn’t for sale, and The Boy wasn’t quite understanding – if they belonged to someone, why were they open? Then he chose a Jeep right in front of the shop, and The Man motioned to him from inside to get out of that one, too. That one was also not for sale.

I redirected him toward the front section of cars, and let him be until the Man returned. It was then we realized The Boy was upset.

He “has” an imaginary Chevy Sonic, to which he has created a set of keys, complete with a computer-generated and printed key fob with lock, unlock, and alarm buttons, as well as a cat charm. He takes them to school everyday. The key is an actual key that was an engraving mistake from the hardware store, given to him for free.

As his eyes brimmed with tears, he told me that he had to give up his Sonic now, and trade it in for a Land Rover.

This was his punishment, I believe for going in cars that he wasn’t supposed to. Neither The Man nor I had been upset with him, but he felt like he had done something wrong, and needed a punishment, so his “car” needed to be traded in.

I felt awful for him, and I didn’t really know how to help. I insisted he didn’t need to give up his Sonic, and then tried to redirect his attention elsewhere. When we stopped at the hardware store on the way home, he picked up another key, deciding that he needed to replace his current keys with Land Rover keys… OK. Whatever you need to do.

This morning, he announced that he was able to return the Land Rover and exchange it for the Sonic, so something had shifted, and all was right in his world again. These are the times when I would love to have just an hour inside his head…