A lot of the time when I read articles or books about Autism, it’s about how the child feels, what Autism means for them, and how we can help them cope and learn. I’m finding out a lot that the books don’t teach how it feels to be a parent of a child with Autism. So here are some things I want to point out from my perspective and also a little bit about Caleb specifically now that it’s been over a year since his diagnosis.

Sometimes I feel alienated. When I go to the store and Caleb throws one of his fits over something like the lights being too bright, something smells bad, there’s too much noise, or even something silly like wanting out of the cart; I get a lot of stares. You know what I’m talking about. You’ve probably been guilty of staring at a parent with an unruly child that doesn’t listen and wonder why don’t they just give their child a swift spanking and move on? Or at least, many of us have. I don’t do that anymore, because now I’m aware that not all children are throwing a fit to be ornery.

So anyway, back to my point, Caleb’s throwing a large fit, parents are staring at me, and I feel like there is this big spotlight on me. Eventually when things  are better, and Caleb’s done an excellent job of braving it through the store, I give him a treat. I often feel at that moment that there are people staring at me and thinking, “Well that explains everything. The kid cries long enough and then the mom simply rewards him. That’s what’s wrong with our society these days. Kids don’t get punished enough. If I’d done that my mom would have marched me and all my sisters out of the store with not one thing!” Perhaps most people aren’t thinking this and maybe a lot of them don’t even notice, but those initial stares, whispers, and general looks of disapproval make me feel alienated. I feel like the bad parent, like someone who doesn’t belong. Nobody wants to bother the lady with the loud kid. Also, the checkers look at me sympathetically and try to get me out of the store as quickly as possible, probably also so I’ll stop bothering their other patrons. Again, I feel alienated.

I’ve remedied this problem a little bit by making Caleb a hat that has the Autism puzzle pieces on it. I always get compliments on his hat when he’s wearing it and I’ve noticed that I get less stares and less puzzled looks when it’s on, too. Perhaps that’s because people recognize, “Hey, there’s something different about that kid.”

My very favorite (note that dripping with sarcasm) comment that many people say to me is, “Your child looks fine. He’s not banging his head against a wall…” I can’t help but think in response, “You’ve spent 5 minutes with him, how could you possibly diagnose him in that time?” or “You’re not a doctor, are you? Shut it!” or “Actually, he does bang his head against the wall sometimes, just not today.” Or at other times I want to say, “No, but questions like this make ME bang my hand against the wall.”

Do I sound fed up? That’s because I am. I’m so tired of everyone thinking that they are a psychologist or a brain doctor. I know beyond a shadow of a doubt that my son has Autism. Why? Because I spend almost every hour of every day with him. I’m not desperate for him to have a diagnosis, and I certainly don’t like the challenges it brings, but I’m not going to minimize who Caleb is just because it would be easier for me to deal with.

As a mom, it breaks my heart that other people misunderstand Autism so much. It breaks my heart that sometimes Caleb won’t have a chance to show people who he really is because they will be blinded by his diagnosis. But as that same mom, I’m so enthusiastically proud of my son for everything he does, especially because a lot of the time he’s overcome a mountain getting there.

The other thing a lot of people don’t understand or even tell you about Autism, is that it doesn’t mean a child with Autism will be stupid or dumb. In fact, Caleb’s quite smart. For example, did you know that Caleb puts my shoes, and his shoes on the right feet? That’s right, he doesn’t ever get them backwards. It dawned on me today that he never puts his shoes on backwards and so as a test, I threw my shoes off my feet in the middle of the floor and asked him to bring them back to me and put them on my feet. I didn’t move my feet so as to not give him cues. He picked them up and brought them to me and set them in front of the correct feet. To test the theory again, Matt did the same thing and he did the exact same thing. Not a lot of 3 year olds know which shoes go on which feet. But Caleb does! He knows the entire alphabet by sound and sight. He knows what sounds most of the letters make and he can count to thirty and recognize up to ten by sight, as well. We are working on reading and adding right now. He partially read a phonics book to me!

Caleb’s intelligence astounds me. He does things I never thought were possible and says words that amaze me. He thinks and comes up with solutions that I never would have dreamed of all by himself. I’m not going to stop or limit him, either. He can do anything he wants to, because nobody is going to tell him that he can’t!

I was told by my in-laws recently that they are proud of me and my husband for the way that we respond to Caleb. They, like many people, are still somewhat unsure of how to respond to him when he is throwing  a fit. To which my answer is this, patience and discerning. The two most powerful things in my arsenal are the gift of discerning the difference between a tantrum and a genuine need and patience. Does that mean I’m patient all the time? Nope! Far from it. 90% of the time I want to rip every hair out of my head.

For example, Caleb says to me, “where are my shoes?” I responded, “By your bed.” He says, “by the bed” and points in some random direction. “No, Caleb, your shoes are by your bed.” “By the bed,” he says. I ask, “Caleb, do you know where your bed is?” He says, “Where’s the bed?” I say, “Do you know where your bed is? Yes or No?” He says, “Yes or No.” I respond, “No Caleb, Yes OR No.” Caleb says, “Yes or No”. At this point, the conversation has gone completely the wrong direction, he still doesn’t know where his shoes are and I’m frustrated to tears. The truth is Caleb actually knows where his bed is, what his bed is, what his shoes are, and how to respond with yes or no, but he lacks the ability to understand even the basic of instructions from me. He’s getting better at it, but it drives me crazy!

Back to how I know that Caleb has Autism. There’s really not a pat way I can explain this. It’s a long list of ways I know, but here are a few. He flaps his hands. When he’s excited and he jumps up and down and he flaps his hands a million times, he looks like a little bird that can’t learn to fly. Sometimes he looks like he’s going to take off in a whirl because he twirls when he does it, too. He hits himself in the face. And it hurts, but he does it because he’s angry and frustrated and can’t get across what he needs. He throws himself on the floor, hard, and unaware of the danger it poses. He doesn’t understand spatial awareness. He constantly runs into people, things, etc. I’m constantly on the lookout of danger that he might run into. For example, most three year olds may not look for cars when they cross the street, but they know they can’t run out in the street, either. Caleb would without hesitation. He has a speech delay and a cognitive delay. He doesn’t follow basic instructions because he doesn’t understand them. He stares at wheels and components of toys repeatedly to see how they work rather than playing with the toys. He lines up toys or cards on the floor, rather than using them for their intended use. He’s compulsive, and compulsively turns lights on and off, moves cars back and forth, etc. He has a hard time making friends. He follows other kids to try to play with them, but they can’t explain to him what they are doing and he doesn’t understand what they are saying, so he doesn’t really play with them, just follows them around. He doesn’t understand most social situations either. He didn’t point and still doesn’t really do it with any regularity. To have us do what he wants he places our hand on the object he wants or wants us to fix. He doesn’t actively play with us. He plays by himself isolated and refuses (most of the time) to let us join. For the longest time, I was literally only there to get him what he needed.

One of the biggest things I have noticed effects me about being a mom of a child with Autism is that it’s really hard to be around regular kids or listen to their parents talk about them. A few of my friends on Facebook have toddlers and they’ll prattle on about how their child started talking about this thing they learned at church, or they learned how to do x thing at home, or they asked for x thing at the store, etc. etc. A lot of these things their children are doing are age appropriate and Caleb’s never done them. It’s so hard to realize and be reaffirmed time and time again that your child is different and not normal.

So here’s what you need to know about Autism:

1. Just because you can’t see it in the grocery store, doesn’t mean it doesn’t exist. Spending 5 minutes with a child or even a half hour doesn’t mean you can diagnose them. Caleb went through many tests and therapies before being diagnosed, but even the doctor that diagnosed him saw it in ten minutes. Caleb presented all the signs to him in a ten minute session. After a long look at his tests/records and a talk with me, he made a diagnosis. To this day, I feel like it’s the right diagnosis. I suspected it at the age of 12 months. Caleb just wasn’t developing normally.

2. A child with Autism is really just a child. They want to be loved, played with, and they want to share themselves with you. Sometimes they don’t know how. Just because you don’t know how to play with them, doesn’t mean you shouldn’t try.

3. Autism is extremely unique in each case. Just because you have seen one case before doesn’t mean it’ll be the same as the next case you see. Each child presents it in a unique way. They do different things. Therefore, not every child on the spectrum bangs his/her head on the wall.

4. Autism really is a spectrum. We are blessed that Caleb is high functioning. He is delayed, but he is expected to be able to progress through life like others his age. Some children are less fortunate and are low-functioning. Their parents may have to care for them forever.

5. Children with Autism are really picky food eaters. This makes getting together really difficult. I promise, I make him try everything but there are really about 5 foods he likes to eat.

6. Many children with Autism are not potty trained until much later than most kids. This is frustrating because I’ve been told about every potty training method known to man. I realize that most kids are already potty trained. I know that he’s really old to be wearing diapers, and I’m also aware that I could force him to sit on the toilet for a million hours, but what I’m saying is that it won’t make a difference if he’s not ready. I really wish I could tell everyone to leave me alone about it, but I know that most people are trying to be helpful.

7. Just because my child has Autism, does not mean he’s retarded. Yes, someone actually did call my child retarded. I was burning with the fire of a thousand suns and it took every ounce of restraint I had not to physically harm this person. Whether or not I believe in karma, this person is being punished, because he is in jail now for something unrelated. I learned an important lesson, I will always want to advocate for my son, especially when he can’t advocate for himself, but it’s not my right to punish the ignorant people in the world. God is just and does that on his own.

8. Not all children with Autism don’t like being touched. In fact, Caleb’s just the opposite. He loves being touched and craves it. Along with Autism, comes sensory problems, including problems with taste, texture, smells, hearing, etc. This is why Caleb shields his eyes in the store. There is too much input, too many things to focus on, too many lights. It’s overwhelming for him.

Hopefully that helps you with the child in your life, while my perspective can shed a little light on how I’m feeling. Perhaps if your child has just been diagnosed, then you can know what to expect to feel, too. I imagine I’m not the only one who feels this way.

As many of you know, I started a new knitting project, called the Beekeeper’s quilt, by Stephanie Dosen, or also known as TinyOwlKnits on Rav. She coined the word Hexipuff for the little “puffs” that you knit for the quilt. They are quite amazing and a lot of fun.

Anyway, there have been some contests going on in the group, and the latest is the Hexipuff Action Shots contest, which is where we are supposed to catch our Hexipuffs escaping our houses and doing crazy things.

I happened to catch two of my hexipuffs eating a picnic lunch today. They took one of my best baskets!

I found a few more staring in horror as one of their Hexipuff brothers jumped through a ring of fire! I was really worried about him, but he made it out okay!

But what I saw next has left me speechless for hours. I found a fellowship of the Hexipuffs in my own backyard. They were going up against the great fire monster. There were 7 of them in all doing a raid, and boy were they brave.

First, they came up against the monster, then a monster trash mob came running out at them. They managed to defeat the trash mob, only to come up against the great fire monster again. They stood brave in battle and defeated the fire monster once again! They were victorious!

(To get a better view of the action, click on the image for a larger version!)

Who knew that Hexipuffs could be so courageous, so brave! Who knew that they would band together and save the day?! Who knew that Hexipuffs could use swords, clubs, and magic to defend their honor? I’m so incredibly proud of their bravery. Tonight, they sit inside a warm house, fed, and happy, while they regale me with stories of their adventures.

Tonight, or this morning (as it were), I feel so melancholy. My heart aches because I have so many passions and desires and I feel like I won’t ever be able to live them out. I just needed to put it out there. <3

I’m going to write a funnier blog later today about a funny incident with the grocery store, but first I wanted to write about something that makes me think.

Last night on our way home from my parent’s house, Mattheu and I were about to get on the freeway and stopped in front of a rollover accident. The guy that ran up to us was a witness from the other side of the accident and was flagging people down. He thought we might have witnessed the accident, that’s how close we were when it happened. I would imagine it was only 30 seconds or a minute between us getting there and the accident’s time.

It blocked the entire road. From the looks of things, we are pretty sure there was a fatality there. The woman from the rolled vehicle appeared pretty hysterical and Matt’s fairly certain she fell to her knees and I heard her screaming.

I felt sick all the way home. This is the second accident we’ve seen in a week, and we narrowly missed being hit twice ourselves in the last week. The sad truth of it, is that if we had been just a little faster, missed one red light, or my son hadn’t stopped to say goodbye to Papa just a couple more times, it could have been us in that accident. It’s very sobering to realize that we are not invincible. We are mere mortals.

The moral in all of this is to be vigilant, be careful, take some time to hug your loved ones extra tight, and don’t forget that you aren’t a superhero. Life is precious, and once it’s gone, it’s gone.

My heart goes out to the families involved in the accident. Even if nobody died, there is going to be a lot of pain and anguish. I’ll be praying for them.

So if you ask my husband whether I’m spontaneous, he’ll laugh at you. And this is why: The other day we went into a pet store for no reason other than to let my son look at the guinea pigs. I saw the fish. That was the end of it. Without warning, I went up to the person at the counter. She looked quite happy that I wanted her help. Either she was bored, or she thought she might make a sale. Who knows. Anyway, I began to ask her what types of fish could be kept with a Betta. She took me back to the fish tanks and told me which ones would make great fish friends for my Betta, King Henry.

I began to look at all of the fish, and as quickly as I had left, came back to my husband to inform him that we were going to be bringing home a couple of fish. I brought him and my son back to the fish tanks to show them the fish that would work with King Henry. He shook his head, but followed, knowing that resistance was futile. I swiftly chose two that I liked, and purchased them, and brought them home.
I chose two female Mickey Mouse Platies. They are really cool looking fish and are supposed to be less aggressive towards Betta fish, so I figured I’d give it a try. I put them in with King Henry, and to my dismay realized that he was going to shred their fins if I didn’t take them out. I gave it a few hours to see if maybe it was a welcoming ritual and in the mean time kicked back to do a little research on my fish.

“Hey honey, did you know that these fish get pregnant quite often?” Matt looked at me like I’d lost my mind. “Oh, and by the way, I think one of ours is pregnant.” Again, Matt looked at me like I’d lost my mind. I began to explain, “Oh, and I found out that once one is pregnant, it’s pregnant for like the next 6 months and has fish every month. What are we going to do with them all?” I had to move the fish to a 1 gallon bowl because it was all we had at the moment, and I was merely trying to protect them from a certain death. I spent the rest of the night researching fish pregnancies and looking on Craigslist for a 5 gallon fish tank. I found one and sent an email right away.

“Hey Matt, did you know that these fish can have like a dozen babies at a time? By the time the six months is up, we could be looking at over 60 fish?!” I said. Matt looked at me and said, “Ash, what have you gotten us into?” I said, “Well, I didn’t know! The lady at the fish store didn’t tell me all of this! I thought I was just going to get our Betta a tank mate!!”

So, we now have two fish tanks, 3 fish with possible others on the way and we may be upgrading tanks again soon. This is exactly why Matt would laugh if you asked him if I was spontaneous. And it’s this exact reason that I get us into trouble more often than not.

In case you are wondering, the title is a tribute to John Reuben. The whole purpose of this post is to get people caught up with how Matt and I are doing.

So right now Matt is interviewing with a major company in Pennsylvania. I’m really excited about it. To be honest, it’s an answer to all of our prayers and exactly what we are looking for. Right now we just need to get through the interview process. I’m just going to ask that all of you keep us in your prayers. This would be a major life change.

A new addition has been added to our family – his name is King Henry. He’s our new Betta. He’s been having some tummy troubles since we got him (not unlike me, I suppose), so I’ve been trying to take really good care of him and hopefully he’ll be feeling better in no time.

And Caleb just had his 3 year evaluations. He’s delayed. It’s not really a big surprise. He was delayed in cognitive, social, and adaptive skills and they still have at least one more area to test him in. The bad news is that he’s not where he should be for his age. The good news is that he’s making a lot of progress and that he still qualifies for services. Provided that we are still living in Washington, he’ll be going to a pre-k special education program with Central Kitsap school district in the Fall. He’s been recommended for the Autism program. I’m really nervous about him going to school, because he’d be going every day, and he’ll likely be taking a bus(!) to school. As far as how he’s really doing – he’s doing pretty well. He’s talking a lot more and even using full sentences which is new for us. Just yesterday he did something to get in trouble, and I told him that he needed to say sorry and give me a hug. He said, “What did I do?” I explained to him that he wasn’t listening and that he made mommy very mad. He said, “why?” So, he’s catching on to conversations. He still stims a lot, though, which in and of itself wouldn’t bother me too much, but when it coincides with an almost obsessive need for things to work a certain way and a sense of posessiveness, it can turn into all out battles. But, we’re doing good. He’s doing good. I’m very proud of him for all he’s accomplished.

Annnddd, me. I’m learning to play guitar. It’s a very SLOW, but rewarding thing to do. It’s been a dream of mine for about a decade now, and I finally get to have that dream. I’ve also been learning how to wash fleeces and hand card fleece. It’s been incredible!! I was recently told about selling in farmer’s markets and I’ve already had people ask me for business cards because they wanted to buy handspun from me. It’s a shame that I haven’t gotten more done before now, but I’m going to concentrate some effort into preparing a lot of “stock” and trying to sell my fiber crafts at the farmer’s markets in the area.

So that’s it for now. Nothing really groundbreaking here.