My son the goat

In the past week, Little Bug has eaten or chewed on the following:

• ·         His shirts (every day) to the point of ruining them
• ·         Chuggington trains
• ·         Forks
• ·         Spoons
• ·         Pencils
• ·         Cars
• ·         Rocks
• ·         A found staple (!)
• ·         Sticks
• ·         Stuffed Animals
• ·         Many things that I have yet to discover

Little Bug has pica as well as a persistent need for oral input.  This means that he without understanding the consequences has chewed all of the above and much, much more.  He has chewed our furniture and blankets.  One time he found a piece of glass at the beach and put it in his mouth to chew.  Anything that can fit in his mouth will go in his mouth.

Because of this, Little Bug has chipped 7 teeth.  We need to get him to the dentist (again) to ensure that there isn’t any critical damage to his teeth.  Right now we are talking about baby teeth, but what do we do when they are adult teeth?

We are at a loss with this one.  He has ready access to gum, chewing tubes, Ps and Qs, and we just ordered a chewing bracelet.  We are going to see if his teacher will allow him to have gum in class to curtail some of the chewing.  Currently he does have a chewing tube at school, but I am wondering if he needs prompting to use it.  If you have any solutions or suggestions- no matter how crazy you may think they are, please send them our way.

Safety Issues

One of the scariest things that we experience with Little Bug is a lack of understanding about safety issues. For example, if you blink, he will turn the hot water all the way up in the bathtub and sit under the faucet- never mind the fact that the water is hot enough to cause burns. Cooking is starting to take two people because he doesn’t seem to understand that the stove and oven are hot. He will try to put his hand on the burner because it is red or put is on the front of the oven because “It’s so warm.” Unfortunately, by so warm, it is actually 400 degrees.

He also has begun to actively try to get out of the house. Mind you, we have three locks and a reverse hinge, but he has figured them out. We are now alarming the doors because he can and will get out. At his parent teacher conference yesterday, we found out that when the other students are getting off the bus, he will attempt to run- to the street, to the school, anywhere. Just running.

We don’t know how to get through to him. I can’t convey how agonizing and heart wrenching this is. To know that despite your best attempts, your child doesn’t understand safety boundaries and could be seriously injured or worse. Worse is something I shudder to imagine.

Ri Da BUS!

School starts in less than a month. While we aren’t sure how much Little Bug understands about this concept, we do know that it makes him incredibly anxious. His flapping has increased one percent; if his arms were actually wings, we would never see him again. He whirls like a dervish- a tiny, sharky, vocalizing dervish. He has also begun to get aggressive again- verbally and physically.

His anxiety feeds mine. I can see him struggle and yet can’t cross the gap to understand and help process the anxiety. I have begun to make a list of things I need to do in my mind- write a letter to the teacher, get chewie rope, get fidgets for the bus, stock up on diapers for school, get a hold of the transportation department, make school pictures for his picture schedule, start How is your engine running, make a weighted vest, make a lycra tube, etc.

Even though the school is only 6 blocks from our house, Little Bug will be riding the bus. Because of his mad Houdini skills- he can unbuckle his five point harness and get wedged between the seats while the car is going 60 mph on the freeway, he has been sentenced to wear a reverse safety harness. I want it now so that we can get him used to it. Unfortunately, we haven’t had any luck in getting a hold of someone.

It is amazing how the stars line up sometimes and suddenly- kismet. This morning, as I was reading a book about video modeling for children with ASD (more on that later), a woman sat down on the bus and introduced herself. It turns out that she is the director of special education transportation for the Seattle School District.

We started talking about Little Bug, IEPs, and transportation and she offered to help me. She gave me a different phone number from what was listed for the SPEC ED director in Tacoma. Additionally, she is bringing Little Bug a squishy bus as a fidget- apparently on the first day of school in Seattle, all the little guys get one to make the bus ride better.

Its times like these that remind me that my family isn’t alone. That we aren’t the first people to do this and won’t be the last. That by being open, we can make connections and get the help we need. It reminds me to repay the kindness and be that resource for someone else.

What a weekend!

It seems like with children in general, as soon as you think you have something figured out, it changes. Little Bug was falling asleep by himself. Not anymore. Friday night was spent putting him into bed over and over again. Very businesslike- "It's time for bed." Done without emotion or eye contact. Not that it helped, five minutes later, I would hear the crinkle of diaper and the thunks of little feet.

Saturday, he did the scariest thing that I think I have ever seen. We were at the bus stop- his weekly treat is riding the bus. It was raining and I wanted him to sit on the bench inside the shelter. He refused to sit on the bench and kept standing up. Over and over this battle would rage- me having him sit down and him standing right back up. He went to stand up and grab my arm, which made me slip. When I slipped, he fell down and hit his head on the shelter- cutting his earlobe and creating a nasty purple shade in the cartilage. He screamed bloody murder for maybe thirty seconds and then was fine- just didn't bother him. Meanwhile, I couldn't tell where the blood was coming from- it initially looked like it was coming from inside his ear. We got it somewhat cleaned up- enough to know that it was only a tiny cut on his earlobe- and then rode the bus home. I put him in his high chair and cried in the next room. I was so scared and he didn't care about what happened. To him it was like it never happened. Even now, with his ear a wonderful shade of purple which looks like it should hurt, he isn't bothered.

To me, that is the scariest. You never know when he is hurt. If he doesn't feel good. I can't help but wonder how would we know if something really was wrong.

On Sunday, we went goodwilling- its fun to do. Little Bug often comes out with a ton of new cloths and books that were a buck each and Nick and I like the search. We found a great book for working on emotions- Sad Monster Glad Monster. It comes with fold out masks and asks children to describe the monsters. The one down side was Little Bug's meltdown in the store if I wanted to look at something without him. You would have thought that Nick was abducting him. "No! Daddee Halp! No, no, no! Owie!" Over and over again. If I didn't know them, I would have gone over and asked if he needed help. Surprisingly, no one noticed or if they did, weren't concerned.

On Monday, I debuted a new therapy with him- the magic box. I read somewhere that many children with ASD have a hard time using multiple senses at the same time. We are currently working on adjectives, so I figured why not put the items in a black bag and have him feel them and teach him the adjective that describes the word. It took a lot of trust on his part, but he can do it. We noticed though that once he sees the item, he can no longer describe it. His therapist A was impressed at our exercised and really interested to that he couldn't describe it.

Here's an example- I placed a softy fluffy baby chick toy in and had him feel it. He was able to repeat SOFT while touching the item. When he retrieved it and was able to see and touch the item, he could no longer repeat the word. We repeated this with a pumice stone, squishy lizard, and cotton ball. Each time, the same scenario played out. It was as though his little brain couldn't process all of the sensory information being provided at once. When isolated, he was able to respond correctly.

I don't know what it means or if it means anything, but it is fascinating to see how his mind works. This will help us be better parents. For us, this whole process isn't about changing him to a mold of normal or curing him, it is about learning how to adapt ourselves to meet him halfway. Hopefully, that is what we are accomplishing.

Nick found some wonderful articles to take to his parents and so did our therapist to help them understand ASD and SID and hopefully, bridge the gap.

It was a dark and stormy weekend....

emotionally. Little Bug had trouble with everything starting Saturday afternoon at about 2 and right on through last night. I don't know what is going on or how to help him. A lot of it seemed really sensory based- getting dressed, putting shoes on, changing his diaper, etc. was traumatic.

He had play group and Autism Education yesterday. Play group was pretty rocky at first- he wandered around outside not making eye contact or listening to anyone. Not being destructive or anything, just not engaged. The teacher thought that if I went and did something fun with other kids, Little Bug might join in. I began to do elaborate chalk drawings of Little Bug's favorite fish- octopus, shark, angel fish, and Nemo- or BO! as Little Bug says. Well, I had the other 19 children from both classes around me, but not Little Bug. Eventually, he came out of his funk and was able to settle in once we moved inside. His teacher wonders if he is "too smart" to play outside- basically she thinks he gets bored with the lack of challenge- physical and mental- and withdraws. My answer- what are we going to do about it?

Autism Education happens at our house on Mondays. His teacher came over bringing lots of puzzles and a baby doll. It was interesting to watch Little Bug begin to pretend with the baby. Unfortunately, the puzzles tanked- they were too easy. His teacher says that she is keeping really busy because of Little Bug- she has had to buy new supplies for class because he is advancing in areas like matching, memory sequences, and puzzles much quickly than any of her other students.

We took our wonderful dog Frank to the vet yesterday for shots. They both did good and we hurried home.... only to find that we left GREEN SHARK at the vet- queue Halloween theme and meltdown screams. GREEN SHARK is currently Little Bugs favorite toy- he carries it everywhere and constantly chews it. He has an identical shark that is pink, but apparently, that one is no good and *only* GREEN SHARK will do. So Little Bug didn't want us to leave, but also did not want to leave himself. We ended up all leaving- after a 30 minute meltdown about his shoes. We rescued GREEN SHARK and Little Bug did the funniest thing. He walked to the center of the waiting room, held the shark over his head, and yelled SHARK! The entire office- including vets and staff- clapped for him. It was the funniest thing ever.

I am hoping that things will even out here soon. It has been a really tough few days and honestly, we need a break- for us and for Little Bug. He has been biting himself a lot in the past few days. He has also been pretty aggressive towards me, DN, and Frank. I want so desperately to help- I just wish I knew how.

Little Bug has a few new words- spoken and sign:

Spoken-
Baby

Sign-
Grandma
Grandpa

We realized something else this weekend- Little Bug has no way of identifying himself and also doesn't seem to realize that the person in the mirror is him. He will stand in front of the mirror and sign to himself and laugh. If you tell him that its him, he usually says no and then goes into a diatribe in his made up language. I am sure it is a musing of genius- I just can't understand.

After yesterdays Autism Education class, we have new things to work on:

• Safety Directions- Kinda like red light green light, but when you are walking in public. Little Bug loves it and hopefully it will reinforce STOP! as he knows no fear and is a runner.
• Stranger safety- he has taken the human connection part of his teaching a bit too far. He has been trying to hold hands with strangers- which is terrifying as all it would take is one person to see that opportunity and be gone with him. We are going to create social stories with pictures and try to teach him who is "safe" and who is not without warping his little mind forever.
• ID Bracelet- we are working on getting him to wear an ID bracelet as he can't say his name, that he is lost, or that he needs help- other than sign language which most people don't understand. Yesterday, he wore it for 5 minutes before he took it off- which is a vast improvement.

Wish us luck. I have to be honest, at times I feel like I am tinkering around in an area that myself and everyone us have very little understanding of.