WHAT A YEAR IT'S BEEN!

I truly can't believe it's been a whole year since I've written in this blog. And when I reflect, what an amazing year it's been for Orion!

All of my previous posts seem to have a consistent theme - trauma. But today's will have a new theme - triumph! Orion has changed. He has really, profoundly changed.

This December we had snow. Not just a dusting, but blizzard like snow. In previous years Orion hated snow. And until this year he was unable to articulate what he hated about it because he couldn't answer who, what, when, where, why and how questions. This is a common difficulty with kids on the autism spectrum. But eventually we got wise and discovered it was the brightness that he didn't like. Snow is dang bright, but to the average person it's tolerable. To the kid on the autism spectrum, it's downright painful. So, when it used to snow we'd be forced to close the curtains and ignore it. Forget going out in it. That was not an option. Orion would just cry and flail around if you tried that. So, we hid inside in our dark hole of a house.

So when the forecast called for snow, and lots of it, I was prepared to become a bat for a while and live in darkness again. But, as John and I unpacked all the snow clothes Orion seemed curious. And since John was home we had two adults to manage the possible tantrum that could ensue if we got him out there and he hated it. Well, he agreed to venture out and he actually loved it! Now it may have helped that his little brother suited up and wanted to go out in it too. But regardless...this is a milestone of epic proportion for Orion. He is building coping mechanisms and self-regulating better these days than I've ever seen him. What a blessing. He's becoming much like a regular kid and actually enjoying "kid" things.

My heart is soaring thinking about it. All I've ever wanted was for him to be content in his own skin. Not for him to be a genius, or popular, or athletic, or anything else someone might aspire for their kids to be. No. I just want contentment in him. He's finally getting it and it makes me so happy.

Beyond the snow he's made other huge leaps. Last year his receptive language was that of a 2 1/2 year old's according to his speech therapist. This year his receptive language is that of a 5 year old...his actual age. He can understand and answer all the "wh and h" questions. He can perceive your mood from your facial expressions. He is considerate of your feelings. He has blossomed in the social and language area to the point that he is an entirely different kid from a year ago. Amazing.

But, there are more stumbling blocks. He struggles with the whole theory of mind thing. For those of you who don't know what that is, when they commonly test a kid for autism they do a theory of mind test. They ask the child to come into a room with a parent. A therapist shows the parent a toy and sets it on a chair. Then the parent is asked to leave the room. Then, in the child's presence, the therapist hides the toy under a pillow or something. The therapist then asks the child "Where will Mommy look for the toy when she returns?" A kid on the autism spectrum will say "under the pillow". A typical kid will say "on the chair" That's theory of mind. Understanding that other people see, hear, and feel different things than you do. Well, Orion still doesn't quite understand that. He understands your immediate mood such as anger, happiness, etc. But he doesn't understand that you aren't always seeing or experiencing what he is. It comes up frequently in our daily lives and can light the fire for many a tantrums but we are slowly breaking through that. I hope by next year that will be another triumph of Orion's. Until then, we will play lots of battleship!

Orion's other struggles are with physical limitations. He still struggles with gross and fine motor skills. But, and this is a big but (thankfully not a big butt!), he finally mastered potty training before his 5th birthday. We never thought we'd see the day. We had tried every method known to man...the Dr Phil potty party, dolls, social stories, reward charts. You name it, we tried it. Then our Occupational Therapist suggested we try something called therapeutic listening. It's a listening program of CD's that play music or animal sounds that suddenly have boosts or dips in certain frequency ranges. It's totally random. I was a skeptic but a desperate skeptic. At that point I was willing to hop on one foot an cackle like a chicken every day for hours if it meant he'd have potty success. So, we got on board and he started listening to these CD's every day at breakfast and dinner time. Within less than a week he was completely potty trained. I was shocked. I am now a believer. The theory is that his interoceptive sense (the one that tells you you are hot or cold, hungry or full, or you need to empty your bladder/bowels) was impaired. And somehow this listening program rearranged his brain to be tuned in to his interoceptive sense. You can probably sense that I have no idea what I'm talking about. Regardless, it works and we are again amazed!

I can't help but think that God has put all of the right people in our path to lead us down this road of recovery. The instances of this are staggering. Starting with our reluctant move to Olympia, our new pediatrician that first suggested we have him analyzed by an occupational therapist at age 2, his OT, his ST, and countless others. It's all God and it's all amazing.

I'm not an overtly evangelistic person. I've always been a bit timid about sharing my faith. But, when a the special education director from his school district mentioned that she had never seen a change in any kid like the change she'd seen in Orion and asked what it was we had done to make that happen, I knew what my answer had to be. I told her it was God. I told her that we have so many friends praying for our son and that prayer is powerful. I think she wanted me to credit it to therapy or a change of diet. And I'm sure all of those things are a factor. But, the biggest factor is God. I truly believe that.

Anyway, I will end with a picture of Orion fully enjoying the snow this December. I can't wait to see where he'll be a year from now. The possibilities are endless!

EXPLOSIVE DEFIANCE

Orion had a particularly bad day. My goodness. It pains me to even recount but I'm sure it won't read nearly as bad as it was. Written down they always sound like regular tantrums. But in person, most people would think "Man, that kid is beyond crazy and needs to be sedated."

It started out as a regular day. Orion woke up at around 7:00 AM and came into our room to play computer while I (Mommy) attempted to sleep. He happily played Charlie and Lola for a bit until he wanted to crawl into the bed with me and snuggle. We briefly watched some TV that he was bored by so we went downstairs for breakfast.

After breakfast, Orion was obsessively cutting out little squares of paper and coloring on them. He has been doing this for about a week now and can't stop himself. He makes little story books or sometimes mini greeting cards. Sometimes he cuts out little post cards. It seems harmless and good for building fine motor skills so we have allowed him to continue. But we did think it was starting to become more of an obsession rather than play time. He would do it all day if allowed.

It was nearing the time that we needed to leave for church so John got some clothes for Orion and put them on him. Orion was annoyed about being distracted from his mini paper projects but he tolerated it. But then John realized that the shirt was too small and didn't look good on Orion so he returned with a new shirt and sweater. He tried to tell Orion he was going to change his shirt again and Orion just flipped out. He started screaming, hitting, flailing. He was out-of-control and there was no reeling him back in. John tried restraining him to no avail. He tried a quick spanking. No effect. The tantrum continued to escalate and we soon knew that church was no longer an option. John then took Orion upstairs to his bedroom to cool off, as per my suggestions. He held the door shut while Orion tore around the room causing a huge fuss. It continued for at least 10 minutes but he eventually calmed down after John repeatedly checked on him and placed him in the blue chair in his room. He came downstairs and we loaded everyone in the car because we had already told Orion we were going to the car. Follow through is very important. But without our childcare worker, who has quit due to personal issues, we were unable to force him to go to church.

So, that was the morning meltdown. It was a mild one compared to what was to come later in the afternoon.

It was about 3:30pm and Orion was playing with Lincoln Logs contently on the floor. Then he told me that he wanted to play computer and he wanted me to watch him. So, I agreed but told him he needed to pick up the Lincoln Logs. He reluctantly agreed and started the task. But he kept losing focus. I kept returning and saying "Orion, before we can play computer you need to pick up the Lincoln Logs". He started and stopped repeatedly for about 30 minutes until I jumped in and said I'd help him. I told him that I'd pick up equal amounts as he did. If he put 2 in the box I'd put 2 in the box. We started the clean-up but then Orion picked up the box and dumped all of the Lincoln Logs out on the floor in frustration. I told him that I was not going to help him pick-up anymore. He made the mess and he was to clean it. He refused. He screamed "NO. I DON'T HAVE TO PICK UP THE LINCOLN LOGS. YOU DO IT (pointing at me)" John walked in during this and reprimanded Orion for talking to Mommy so rudely and demanded an apology. Orion didn't apologize and didn't pick up. Thus the war began.

Orion proceeded to scream, kick, hit, throw, and generally be non-compliant about clean-up. Each time he tried to leave the room or area I swiftly brought him back to the rug for clean-up. Each time I did he got more and more angry. I told him calmly and nicely that this all could end if he just picked up the Lincoln Logs. He continued to kick and scream and be defiant for another HOUR AND A HALF! I remained as calm as possible and even tried to quietly encourage him with words like "You can do it, Orion. I know you can. You can pick these up. You are good at picking up Lincoln Logs. Give it a try." He didn't care. A few times he broke down crying and sobbing and said it was too hard. I comforted him with my words and said "I know it is Buddy. But you can do it." He wanted me to hug or hold him but I refused. That would have been a reward and he was to have no reward until the task was complete. He cycled in and out of sobbing, screeching at the top of his lungs insults and demands, and zoning out on the floor.

Finally I had had enough of it. I needed to put an end to it. I gave him an ultimatum. I set thirty minutes on his visual timer and also the egg timer and told him he needed to have the Lincoln Logs cleaned up by then or I would put them in the trash. He argued. "NO MOMMY! DON'T PUT THEM IN THE TRASH. NO!!!!". But still, he was not moved to action. Then when there was about 15 minutes left he started to pick some up. John and I applauded and told him he was doing such a good job. But then he stopped and started more refusal. I warned him as the minutes ticked by. Still he refused. Finally the time had lapsed and I was forced to follow through. I put all of the Lincoln Logs (which took me less than one minute to pick up and we'd been doing this for a total of 2 hours now!) in a trash bag, put my shoes on, and headed out to the trash bin with them. Orion was distraught. He tried to go outside but we stopped him. He cried and said he wanted them back. I held him and told him I was very sorry but this was the choice he made. I think he really thought if he cried enough we'd bring back the Lincoln Logs. We did not.

He ate dinner, played computer, took a bath, read some books, and went to bed nicely with no mention of the Lincoln Logs. But the next morning he asked where the Lincoln Logs were and I said "I'm sorry Buddy, they are gone". He was sad but just whined a little and started making more mini greeting cards.

Lesson learned? One can never tell with Orion.