Hello, neglected blog. It’s been a while… I know we have that whole half-done post hanging between us and I also have some marking sitting on my side-desk screaming at me to get done, but some thoughts popped into my head that would like to come out.
Sitting here in my office I have a picture frame that has a few hundred pictures of the kids from 5-3 years ago. Yes, it should probably get updated, but that’s not why I’m writing. I happened to glance over and see this picture of the twins at 3 days old. For a year this was the telling picture, Elijah was pretty laid-back and Petra was the crying and colicky handful. What made me pause was how flipped the situation has become in the years since then with Elijah’s autism taking charge of our lives and Petra being more along for the ride. A few seconds later the next thought came, about how, lately, that’s not right either.
A couple days ago Elijah’s helper (L) from Autism Services came out (as she does once or twice a week for an hour) and I had to call Petra out of the playroom so they could focus on their tasks for the time they had to work. To Petra, having L come out is the same as having a playdate. She sees that Elijah gets to read and play games and do things that should be fun, and usually near the end Petra and Natalia will get to join in and have some fun too. I had to explain to Petra that having her up in the playroom, even though she promised to play by herself off to the side, would be a distraction for them. I told her that Elijah wasn’t playing, that he was working and that L was teaching him things he was having trouble with.
Petra said, “I know, it’s because sometimes Elijah acts like a little kid.”
My heart breaks and mends at once with this statement. It breaks because she realizes that Elijah is different from her, she knows that he isn’t quite normal, doesn’t act quite how he should. There have been many times in the last year where Erron and I have thought about how and when we would need to explain autism to Petra, and to Elijah. Not only do we want to protect Elijah from everyone else in the world, but there is also a part of me that wants to protect him from his sisters seeing that he is different in case they have trouble handling all that this entails.
The mending comes from that one magic word “sometimes”. Yes, Elijah acts like a little kid, does things that are erratic or has tantrums, but not nearly as often as he used to, and Petra sees him as more normal than abnormal.
Not only does she see it, but I do too. Autism is still something we don’t get a break from, it takes no vacations, it happens every day. But… it is less than it was 2 years ago when every day left Erron and I feeling defeated, like we had nothing left to give in the fight. We have spent tens of thousands on therapy, changed our lifestyle based on getting good and healing foods in everyone’s diet and made family the top priority in our lives and the results are wonderful.
Each one of our kids is a blessing and has love in their hearts for their siblings that they show each day. Elijah will quit his video game (that would normally cause him to have a fit) so that his sister can join in. Petra will move places during breakfast so that Natalia will stop her meltdown because she wants to sit in the middle spot. Natalia will fetch toys or diapers for Micah. Elijah will let Micah crawl on him instead of kicking him off or moving away. Petra will make everyone’s beds because she hears Erron or I complain about the mess upstairs. Natalia will give over her toy to Petra even though she wants to keep it because she sees that Petra wants it more. SO many examples I could put in, and the specifics don’t really matter, what matters is that everyone has good days or bad days and everyone else helps to get through the bad times, and to enjoy the good times. We fit, this family of ours, we give, we take, we may fight, but most of all we love.
It’s hard to put a feeling into words. Especially when that feeling is born out of such tumultuous times as these. But when I think about us as a whole it’s like the feeling of having a new baby fall asleep on your chest, just warmth and softness and love. I don’t know what the future will bring, but right now I am happy and have hope.
Elijah has autism, that’s no secret to anyone who follows my blog. Tomorrow he will be getting to see a highly recommended autism specialist here in Saskatoon, and hopefully this will allow us to try some new biomedical interventions. Also, if you know me, or more precisely, if you KNEW me 10 or more years ago, you probably know I am not the most social person. I didn’t have many friends for a number of reasons and was generally uncomfortable around new people. If it hadn’t been for BBS’s giving me an avenue to make friends with the distanced social interactions I’d probably be in a totally different place than I am today. Oh, for the days where I would get Transformers as Christmas and birthday presents because I thought they were cool and just leave them posed on my shelf because I had no idea how to play with them, or how I would spend summer vacations reading books inside instead of going out and making friends. The people who barely knew me in early adulthood who thought I was stuck up because I wouldn’t socialize with them at parties and on and on… I have done a lot of work to be more “normal”, but believe me, it takes conscious effort. Even today, right now, I sit in my office with the door closed because I don’t like the thought of people walking down the hallway and intruding into my “private space”.
So, today I was taking a mental break from getting my class notes ready and I started doing some autism reading thinking about how tests are done and high vs low functioning and Asperger and the like, and I came across the Autism Spectrum Quotient test. This was originally made as a test for adults and then modified to make tests for adolescents and children. I got the paper for the kids version to take a look and then I wondered if there was an online version for the adult test. Sure enough, Wired came through with a web version here. I did the test and got my score and then had to go into the literature to see what my score meant. Here is a quote from a paper from 2005 evaluating the effectiveness of this test as a diagnostic tool:
In short, 80% of adults with AS (Asperger Syndrome) or high
functioning autism scored above a critical minimum
of 32, whereas only 2% of control adults did."
Now what, you might ask, was my score?
It sets my mind at ease a bit that if I made it through my oddness to being a truly happy, healthy, and productive person that Elijah might follow the same path; in his way, at his pace.
Yesterday’s blog post was about a hard day with Elijah, and I hinted that I might explain why he had a bad day. Here’s some backstory, as each story should have. In my youth I ate whatever I felt like eating. I was a big junk food eater, the kind that would bring boxes of candy to a party and when I started drinking coffee in University I would take it with 10 creams and 10 sugars. For me, as James has put it recently, food was fuel. If I found myself in the grocery store I would actually price out which drink would give me the most calories for the least amount of money. Fast forward a few years, I was in grad school, Erron was starting a nursing degree and we were expecting twins. We were poor, and if you think,”Oh yeah, I’ve been poor before”, just let this sink in, we made $6000 that year. We didn’t live off $6000, that would be impossible. We went into debt but pinched every penny we could. I remember going into the store and get the 96c pasta instead of the 98c pasta. We were forced to cook from scratch because processed food is just too expensive.
Move forward a few years. I’m still cheap, we make more money but have more expenses, we still cook from scratch for the most part and we are living in Chicago. We got an autism diagnosis for Elijah which wasn’t a surprise, but still weighed our hearts down heavily. Erron began to research treatments while I generally assumed that there wasn’t much that would be helpful when he was only 3. Erron read about the gluten-free and casein-free diet and asked me to give it a try. I thought it was all hokey nonsense and went into the primary scientific literature to prove it so Erron would drop it. I couldn’t find anything against it, I could find anything supporting it. The time needed to do a proper controlled experiment is years, the time to publish is probably a year or so more than that. All I had available to me was anecdotal evidence of parents who had seen improvements and, more convincingly, a video journal of a college aged kid who has autism and talks about how he feels when on and off the diet.
I wasn’t convinced, but I would let Erron try.
The GFCF diet is VERY hard at first. You need to eliminate all milk products and wheat products from your diet. Think about it. Not just avoiding milk and cheese and bread, but every single thing that has milk, or casein, or sodium caseinate, or milk products, or lactose, or wheat, (or rye, oats or barley as the fields are almost always contaminated with wheat). You can’t eat out, you have to read every label of every food you buy and generally can’t even trust the stuff you find in a your friends’ pantry. We had to get special soy milk, special noodles, special bread, get rid of just about every processed food because they are so formulated that they usually have one, the other or both.
I figure we’d give it a month, maybe… 2 weeks in we were putting the kids to bed. Petra needed her hugs and kisses and story and time sitting by her and Elijah was the kid who would just lie there and fall asleep. After putting Petra to bed, turning off the lights and stepping out to close the door Elijah called out to me, ”Daddy? I want a hug too.” My son who barely spoke, who wouldn’t look you in the eyes or respond to your voice just asked me for a hug. I was a BELIEVER. (even just writing this brings a couple tears back to my eyes remembering the feeling)
We kept up the diet, not just for Elijah, but for all of us. A 3-year old can’t tell the difference between my glass of milk and his glass of soy milk. If he is thirsty he just drinks, if he is hungry he eats what he finds, special diet or not. He started to make steady progress and I felt such great pride in what he was accomplishing. One day when Erron, her Mom and the kids went to the Museum of Science and Industry they had Kool-Aid slushies and the next day Elijah was back to screaming and biting and generally uncontrollable behavior. We decided that we needed to cut out artificial colors too. One more thing to label read… great.
Over time we have gone from just reading labels to avoid certain ingredients to a general trend in eating better food. Knowing that Elijah has sensitivities that modulate his behaviour has helped me to justify spending more money on organic food as a general rule is that the ingredient list is shorter and I don’t need to worry about artificial crap being added to make the food more shelf stable, addictive, pleasantly colored or whatever the hell they think they’re doing. Don’t get me wrong, I resisted eating organic because I didn’t believe the price justified the benefits. I didn’t really care for myself about pesticides, herbicides, non-genetically modified foods or the other mainstream organic arguments. It was easier to control what additives were in our food, but my payscale in Chicago made what we could eat organically quite limited.
Moving to Saskatoon I got a nice increase in pay, and with it came the ability to spend more on food. Today we are part of an organic co-op and most of the fruits, vegetables, grains, milk products (we’ve re-introduced cheese for everyone except Elijah as all veggie cheese is a poor imitation) and even some of our meat is organic. I believe that the food we eat is better, despite the added cost, and the availability of organic goods in supermarkets makes it so much easier to make that choice.
So where are we now? Oh yes, the bad day. Generally when we have to be away from home for a day or two we try our best to control our diet, but sometimes having food in your belly is necessary despite what other garbage might be in it. We definitely know when we slip up. When Elijah sneaks a hotdog bun from the girls’ empty plate or a chunk of blasted cheese. A day or so later he regresses, he bites, he screams, he might even wet his pants. This is not the boy we see day to day, this is the boy we had before the GFCF/color-free/organic diet. This weekend we were out of town for a funeral and being with family and at the service meant eating the food we were provided. Elijah had a few instances I know about where he ate something he shouldn’t. There were probably more that I didn’t know about too. It wasn’t a surprise that Monday was a bad day. It is hard to blame a kid for his behavior when you know it has more to do with how vigilant you were in making sure he eats right than him wanting to be “naughty”.
Today Elijah was back to normal. I was at work and got a phone call from him, he had pressed Erron to call me in my office and when I said hello he started telling me 100 things about his day (a little too fast and jumbled for me to follow it all), but it was probably the longest phone conversation we’ve ever had. He continues to amaze me, and I will continue to do right by him, and I have become a believer in eating well because I’ve seen it work for him, and me. (Almost forgot to tell you that my bodily response to eating poorly over the weekend was both stinky and runny… what happened to my belly of steel?)
Today was a hard day. If you’re unaware, our 5 year old son Elijah is autistic. Some days it is mild (he talks, he plays, he reads, he’s happy…), some days it is not. Today it was definitely not. This morning started with getting cereal for Elijah. Elijah got his corn flakes and wanted to pour his own milk, I let him do it and while the cereal was a bit submerged it wasn’t a big deal. A couple minutes later Natalia came for her cereal, I got it ready but ran out of milk so I took Elijah’s bowl to pour some over and he had a fit about me taking it. I had to step out to get ready and when I came back Natalia was crying and holding her bowl in her lap to protect it and Elijah was screaming. Great… just what I needed a few minutes before we head out for therapy. I was hoping this wasn’t an indication of the session we were about to have, tough luck for me.
The drive was pretty standard, we got into town on time and halfway across the parking lot Elijah asked me to race him. We got into the waiting room, he kicked off his shoes and went straight for the castle set with gold and black knights. He played out the good black knights defending the castle from the bad golden knights when David, his occupational therapist, came over to get us.
We walked over to the gym, a big room with swings and giant pillows, a whiteboard and bean bags. All sorts of things that we use to help Elijah take direction, engage with people, deal with disappointment, satisfy his sensory seeking behavior and more. On the table was a pinwheel that I’d never seen before and Elijah went right up to it. He asked David if they could play with the pinwheel and David showed him how to make it spin. Elijah gave it a try, David gave it a try, and then David decided to make this a task dealing with following directions by seeing if Elijah could blow while David held the pinwheel and counted to 3.
To pick any word for this other than terrible would be hard to do. Elijah wanted to do it his way, to grab the pinwheel and take his turn blowing in short puffs however he wanted. David wanted to get the task done within the boundaries he had set out. They had to stick together, David would hold it, Elijah would blow. It was a power struggle with Elijah writhing on the floor while David held one or both of his hands. I sat and watched as Elijah bit David’s hands to try and break free, and at a couple points where he did have a free hand he would try to strike David by swinging out his straightened arm at David’s head.
I knew what David was doing, I knew that I could just tell Elijah to sit and start counting down from 5 and he would do it. The point wasn’t to make Elijah sit and blow the pinwheel. The point was to get him to decide to do it. David also could have let go, made a concession on the task, picked something else to do, but he wanted to get Elijah to decide for himself to cooperate.
It was agonizing.
For 35 minutes this played out. Elijah would struggle, he would come down, David would hold him tight (as the pressure helps to calm him) and then he would ask if Elijah was ready to sit and blow the pinwheel. Elijah would try to grab it, or get away, or who knows what and the power struggle would continue. We only have 45 minute sessions, I began to worry what would happen if we didn’t get some resolution before time ran out. Then, for no other reason than Elijah had tired of the struggle he sat down and let David hold the pinwheel while he blew. They did it a few times trying to get Elijah to do one long blow instead of many quick puffs. It was a relief when the next 5 minutes were spent with Elijah in the cocoon swing, an enveloping lycra-ish swing that wraps around him and lets him feel snug and secure.
David and I talked about what had just happened. He wanted to make sure I was okay with what happened, I let him know I totally understood the point of the exercise and apologized if Elijah had hurt him. He said it was no problem as he could have stopped at any time.
We drove home, and Elijah told me he had good news and bad news. The good news is that he got to blow the pinwheel, the bad news is that he bit David. Elijah knows what he did wasn’t right, and he bites about a twentieth of how much he used to a year or so ago, but when he is very frustrated, and even confined, he just does what seems natural to get out of the situation. I took the day off of work as we haven’t had a day with Erron and I both home to tidy up in a over a week and we paid some extra attention to Elijah to make sure this rough day turned out better. By the evening he seemed mostly his normal self again, and tomorrow… tomorrow I might write why we had the bad day we had.