Wednesday, October 29, 2014

He's just....different



He’s just….different. That’s what we told people when they asked about Fynn’s unusual behaviour. See we’d never really heard of autism. We were just raising a very unique child.



When Fynn was born he seemed like any other normal kid. In just a few months he had developed a severe case of eczema. It was so bad that most people’s first reaction to him was either a look of horror or pity, but rarely th’ usual “face lighting up because I see a baby” that other infants receive. I hated it. I didn’t want his first impressions of people to be them looking at him like he was to be pitied, or some kind of monster. There were times when we’d walk into the room after putting him down for a nap only to find he had awakened before we got there and was scratching his face to pieces, he’d look at us with this big ole smile like he was so happy to see us, and blood would be running all down his face, hands and arms. It was horrible. If you have never seen your own newborn child covered in blood you have no idea what it feels like. He didn’t seem to feel th’ pain of it, yet the itch was automatic. It got to th’ point to where we had to cover his hands with socks all th' time, and someone almost always had to hold his arms so he wouldn’t scratch himself to bits. He wore socks over his hands till he was about three years old. We took him to two different doctors, and had him tested for allergies. He was basically allergic to food. He could eat beans and rice and some meat, as long as it had no additives. Since he was nursing that meant that's all that  me and Beth could eat. We tried different crèmes, salves, and medicines. Nothing made any difference. But he usually seemed happy, he smiled a lot and he pointed and grunted.  He especially liked it when I would come home from work, he’d stick his arm straight out at me and smile from ear to ear while his whole body flipped and flopped. 

After a year we moved from Portland Oregon to Fort Collins Colorado to be near family. As he got older he started tantruming more and more. By th’ time he was two he could easily throw ten or more of what we called “super fusses” a day. Even though his eczema was improving, we just attributed it to his being constantly uncomfortable and in pain. He never slept for more than two hours at a time. Which means that we never slept for more than two hours at a time.  Around this time is also when we started to see th’ more creative side of him. Like lining up toys. He’d line up everything he could move. There would be lines of toys and other objects going into and out of every room in th’ house, including up and down th’ stairs. We didn’t know what to make of this, but it was really impressive, so we just thought he was a genius. (still do in fact.)  He also became endlessly fascinated with tunnels. He loved everything about them. Their roundness, their depth, distance, their scaryness, their echos, their coolness, their darkness and lightness, th' fact that they can be any size from bigger than you can fathom to smaller than you can even imagine. Anytime he saw anything even remotely resembling a tunnel he would stop and examine it for as long as we’d let him. It could easily take us most of a day to walk to th’ store down th’ street and back because we’d have to stop at every gutter drain and ditch tunnel along th’ way. But we didn’t mind, we were as fascinated by him as he was by tunnels and lining up toys. He also became fascinated with animals, and seemed to have a special connection to some of them. For Easter his second year he got a stuffed bunny as a present. That bunny became a part of him, he did nothing and went no where without it. Anytime he did anything or wanted anything th' bunny did or wanted it too. He would make this smacking sound with his lips that was th' bunny talking. Most of th' time “Bunny” asked for things instead of Fynn. For example, if he wanted a drink he would go over to his cup of juice and hold th’ bunny up to it and make his bunny talking noise. He wouldn’t pick up a cup and drink from it on his own till he was over three years. One time me and Fynn went for a bike ride to a field to look for bunnies, we saw one, and Fynn started making his bunny noises, holding out his stuffed bunny towards th' real one, and that bunny came right up to him and stayed there for almost ten minutes, before slowly wandering away. I stood over th' bike in awe th' whole time. He also loved th' migrating Canada Geese, and stared at them as they flew over all fall and winter. We saw few of our friends during this time. Fynn was just so intense with his passions and tantrums that we had no time or energy for anything or anyone else. But we were living with Beth’s parents at this time, so we did have a bit of a tribe around us, albeit a small one.

 By age three he still was not talking or walking. To move around he scooted himself on his bottom by pulling himself with one leg in front and pushing with his hands behind him. We called him little crab. And while he learned a few words he soon quit using them and reverted back to his grunting and pointing. We knew he could talk, and that he understood what was being said, he just chose to point and grunt. He also had a really hard time with food and drinks, and we fed him most of his food well into age four.

During his tantrums there were two things that calmed him- taking him for a bike ride, th’ bumpier th’ better, and putting him in a swing. If he had a tantrum, at times even in th’ middle of th’ night, I’d put him in th’ bike trailer, or in this child seat that sat up on th’ handlebars, (our voice in the ear seat) and we’d go find someplace bumpy to ride. This almost always calmed him down, and was often the only way to get him to go to sleep. The other way was th’ swing. There were times when we’d spend hours at th’ park just swinging him, because it was better for all of us than going home and having him screaming all th’ time. Often he’d fall asleep in th’ swing and me and Beth could have all those talks that parents need to have. He stayed in those baby swings till he was too big to fit, then he reluctantly let us move him over to th’ regular swings. I especially loved pushing him on th’ swings at night. We’d talk about th’ stars, th’ heavens, the animals, all th’ good things that happened that day. Really it was just me talking, yet somehow it never felt like a monologue. I always felt that we were communicating, and that he was absorbing everything I was saying. In fact, it never even entered my mind that we weren’t communicating. There were times when I felt that he didn’t need words to communicate, and that rather than he it was me with all my words who had difficulty communicating. He seemed so wise, like he knew so much more than he was telling me.

Good smells also seemed to help calm him down. I remembered how when he was first born we'd take him for walks around th' neighborhood, anytime he would fuss we simply found a lavender or rosemary bush and squeezed th' leaves under our noses, and we all felt better.                     


Just before his third birthday we moved into our own house . By this time he had a large collection of animals that were his friends, which he would have conversations with, but he completely ignored other kids. We took him to playgrounds everyday and he never seemed to notice anyone but his toys and us, and sometimes another adult, but never the other kids. He would play around kids, but not with them. People would try to talk to him and he’d just ignore them, to which for awhile we’d make some lame sounding apology, but began ever more increasingly to let Fynn deal with people on his own terms. We were fascinated by how he reacted to other people and how they reacted to him. Remember, we didn’t know what autism was, we just knew we had this eccentric and fascinating little boy who kept taking people by surprise, us included.


During his third year of life his eczema mostly cleared up, yet his behaviour seemed to get worse rather than better. We could no longer attribute it to pain or being a baby. We were th’ center of attention everywhere we went, whether he was being good or having a breakdown. He just didn’t do anything th’ way you’re supposed to. We joked that we were the entertainment when we went somewhere, and that we should be getting paid for it.

He loved books, and often made us read to him one book after another for as long as we’d let him. One of his favorites was a book about tails, and at the end it had th’ biggest tail of all, a blue whale. He loved this part and everytime we came to th’ whales tail he would get so excited he’d flip and flop and laugh so hard. So we started learning all we could about whales, and he got a stuffed whale for Christmas. One of th’ things he held onto were th’ stories about whales helping people, and keeping them safe, and to this day he comforts himself with the knowledge that whales keep you safe. And he still sleeps with a whale every night.

Along with his tantrums, his creativity was also growing. We had to save every toilet paper roll or paper towel roll or foil roll that entered our house, because they were tunnels.  He would build elaborate structures and mazes out of them, or have me build things with them, then bounce on th’ couch and laugh hysterically as he threw his favorite stuffed animals at them. Again, he did this as often as we’d allow him too. They were wild and crazy games which had to be played exactly th’ same way everytime or he’d have a meltdown. He loved light and shadows, and would make shadows with anything he could find, and look at them for long periods of time.  He started walking during this year too. He was (and still is) clumsy, like he had little control over where his feet went. He didn’t and doesn’t have much understanding of where his body starts and stops- he bumps into things way more than normal and falls out of his chair often. I remember reading a story by adult autist Judy Endow about how when she was young she fell out of her chair a lot. She said she couldn’t sense her body at times, and I think Fynn is much like that too. Not long ago he tripped over nothing, and I told him he needed to pay attention to where he was going, to which he replied “I don’t always know where I’m going papa.” 



He started talking during his third year too. But he skipped singular words and went right into echolalic phrases. He told us what he wanted by using th' phrase we would use if were were asking him if he wanted something. For example, if he wanted juice he would say “Would you like some juice,” or, if he was cold, he'd say “are you cold.” He seemed to have no concept of first, second, or third person. And still to this day, if he gets stressed or over-stimulated, he'll revert back to this manner of speaking. His list of phrases to use grew rapidly however, and so others wouldn’t often notice his echolalia. I remember Temple Grandin saying th’ same thing about herself, how as she got older and added more phrases to her vocabulary she could mix things up more and sound less repepitive, Fynn is very much like this. Still today when he says something we haven’t heard over and over it surprises us. I remember one time not long ago, me and him were out looking for snakes, his favorite thing to do that summer, and he stopped this lady jogging to talk to her. He can be hard to understand if you are not used to listening to him, and he was talking to her about snakes, telling her all about them and that we were out looking for them, and asked her if she was out looking for snakes too, and a few other questions which I’ve forgotten. He was six years old. Th’ lady kept looking at me for help or explanation and I was standing there with my mouth open thinking uhhh, he’s talking to you- I’ve never heard him talk like this, or say these things, no way am I going to interrupt him to offer an explanation. I was as surprised as she was. Or just the other day, we were at a farm and Fynn sat down by an injured duck and told it a story. I sat there in amazement and listened. This was something totally unscripted and original.




Also, potty training was out of th' question. He wore diapers till he was over four years old, and still, at nearly age seven, has accidents. He was big enough that we realized cleaning dirty underwear wouldn’t be much different than cleaning dirty diapers, so we just stopped putting him in diapers. We can tell by th' way he acts when he has to go to th' bathroom, but he simply cannot interpret his body signals. When he says he needs to go to th' bathroom, what he means is if he doesn't go right now it's coming out anyway.



During his fourth year he got really into numbers and dominos. We saw this video on youtube where a guy made th’ symbol for PI out of dominos and had a big circle around it. Fynn loved it so much that we started learning about Pi. He learned well over a hundred digits of it, just for fun. He started playing with numbers like they were his friends, instead of his stuffed animals. Each number had it’s own personality, it’s own place to live, even it’s own voice. He learned basic addition subtratction and multiplication quickly. He started collecting calculators and just playing with them like other kids would play video games. Everywhere we went Fynn had a calculator with him, to which we often joked was his “iPad”. One day in his Sunday school class they had a large banner of paper for th’ kids to draw pictures on. While the other kids drew pictures Fynn wrote out a hundred or so digits of Pi across th’ top, much to th’ teachers delight. They were only used to the out of focus unreachable Fynn, this kid who could concentrate on that many numbers for so long was someone new to them.



Two weeks before his Fifth birthday his younger brother Rowan was born. Fynn stayed with his grandparents for two days during th’ birth and just after. When they brought him home to meet Rowan we suddenly realized that he had something going on with him. But we still didn’t know what it was. For a couple of days th’ word autism got stuck in my head, but I kept thinking about “Rain Man” and thinking, no, Fynn is not like that. But one day at work I typed in symptoms of autism into google and found checklist after checklist where Fynn exhibited 8-9 out of ten symptoms of autism. I went home and told Beth, we started doing research, and we realized, after five years, something new about our son. But rather than having that hit in th’ face with a baseball bat feeling, we were relieved. Suddenly everything made sense. Th’ not sleeping, the incontinence, th’ meltdowns, th’ no eye contact, ecolalia, sameness, late walking and talking, then th’ talking non-stop. We had an explanation for friends and family and strangers for all of his un-usual behaviour. We were ecstatic really. We figured if we just knew what was going on we could deal with it. And we were glad that it took us so long to find out. Because of our ignorance, we were unclouded by all the opinions that come with autism. We interpreted all his stimming and classic signs of autism as genius. Like all great artists and thinkers, he was just different than others, we only tried to encourage him and see who he was, we never tried to get him to be like anyone. We were amazed at who he was, and th’ last thing we wanted was for him to change. We did want him to be able to overcome his difficulties, which were many, but we  never saw those as who he was, just hardships that we all had to deal with together. And even today, after having made so much progress in overcoming so many things, he’s still th’ same kid, at times wild and crazy, at times so utterly focused that he appears unreachable. But still th' sweet kid he always was.

Since Fynn’s eczema started, he’d never been into cuddling and didn’t like hugs. Now that we had Rowan we realized how important hugging your kids is, and so we taught Fynn how to hug. Gently at first, and it took awhile, but now he will give some awesome hugs. Though his hug of choice is usually a running lunge at your gut.



Towards th’ second half of his fifth year and into his sixth it was all about planets. We watched every planet video on youtube, read every planet book we could find. He drew pictures of planets everywhere, and we turned his room into a solar system. We cut out different sizes of circles corresponding to different stars. He learned th’ names of all th’ known stars larger than th’ sun. He learned the distances between all th’ planets. He made miniature to scale  models of th’ solar system often using a tape measure to measure th’ distances. We learned more about space from him than we did in school. After planets he got into dinosaurs, volcanoes, and tidal waves. It was exciting. 




He was even getting better at going to th’ bathroom on his own. He still has issues with that, but we’re just glad we’re not changing six year old diapers. He also made his first friend during this time. Our neighbor, a girl a year younger than him. Our back yards were separated by a chicken wire fence, and she would be outside playing while he was in th’ swing, which again was whenever we let him. They started talking on their own, and throwing balls back and forth to each other. Then drawing in th’ front driveway together with chalk. We were so proud of him for this, and it’s helped him to open up and make other friends too.




So he’s nearing seven years now. He’s into snakes and making stop motion movies. He has these great elaborate stories in his head that he reveals to us through plays he puts on and movies he makes and pictures he draws. He’s actually communicating with us through his art- letting us know what th’ world looks like to him. He’s still endlessly fascinating. He still has super-fusses, and doesn’t really look anyone in the eyes, though he has learned that he’s expected to look people in the eyes so he looks at them with this comical kind of sideways look where he opens his eyes real big so you can see them. He still surprises people. And he’s silly. He has taught us so much, like th’ joy of being a child and learning- and that you can regain that joy even if you lost it while growing up. 






2 comments:

Heather Alkhatatbeh said...

He sounds like an absolutely amazing guy! I hope I can meet him one day! Love and miss you guys!!

sf said...

This is such a fantastically well written post - it would make a great article in a parenting magazine or forum. How many parents, friends, and families could benefit from such a calm breakdown of so many particulars.