Seriously hair raising

So last night, Nick and I apparently lost our minds because we decided to do our twice a year hair cut for Little Bug. I remember now why it is only twice a year.

Even before a single hair on his head was cut, the screaming began. Nick tried to distract him with some sea life, however, that can only do so much. I began to wet his hair down in order to cut it and he began to gag himself.

Once I began to try to cut his hair, he began to shake his head as fast as he could while pinching and biting himself.

Amazingly, he still has both of his ears and eyes and not a scratch on him. His hair is even- how that happened I don't know. Nick and I both needed a break and half a beer in order to bring the nerves back down.

Once he was done getting his hair cut- or if you were walking by my house, tortured and then murdered slowly- he took a bath and was absolutely fine.

I wish there was a way to make this better. I have tried cutting his hair with and without clothes on. With hot and cold water. None of it matters. While I understand that I could pay someone to do this, I can only imagine how traumatizing that would be to them and Little Bug.

Occupational Therapy

Little Bug had his first session with his OT L yesterday. She wants to teach us brushing, but did caution that it would be done every hour and a half except when he is sleeping for two weeks. Other than that she didn’t give us too much information. Nick is going to follow up with her in order to get more information before we decide to go ahead with it.

She didn’t have much information about the self injury- she said that until he gets more speech, we won’t know why he is doing it. To me, that is a non answer. Little Bug isn’t in speech therapy and even if he was, it isn’t a miracle! It takes time and work. We are going to have a meeting with his therapist and our FRC as we don’t feel like enough is being done about these behaviors. When it comes to hurting others, the strategy is to prevent it- which means that while the intended victim doesn’t get harmed, someone still does.

Going back to the visit, L plans to have a snack time next time in order to help get Little Bug to try more food. She is also going to do bathing and dressing in future visits.

Right now, Nick and I are frustrated as we watch our sweet boy hurt himself for who knows what reason. Everyone seems to be pinning their hopes on speech. Well, let’s analyze this for a second. Children by the time they are 2.5 should have a vocabulary that is close to if not exceeding 300 words and be able to use two to three word sentences. Little Bug has 53 words, of which only 30 are spontaneous. The rest we prompt him into saying. While I am not saying that he will never reach that summit, I believe that we need an interim solution.

You can always have hope- you *should* always have hope. Hope that there will be change, hope that your child will achieve their fullest potential, hope that you will be able to help them overcome whatever challenges they face in life. But while you are hoping, don’t forget to work and plan and strive. Nothing is achieved without a great amount of work. I am the kind of person that always prepares for the worst. To me, pinning our child’s safety on speech therapy and the hope of speech is not an option. Now, we just have to have a plan.

Weekend Review

Halloween was interesting- it was like herding cats. I will have to post pictures. Little Bug had an okay time. He really liked the candy aspect of it. He readily signed CANDY PLEASE at every store. He did not like the costume aspect- he cried and cried and cried over his costume. Once he saw other kids in theirs, he became distracted, but was unhappy with it until that point. He also had a hard time with the process of trick or treating. We went to the Proctor District and you stand in a HUGE line as trick or treat. This meant that there was someone bumping him or touching him or getting to close and he would get upset. He did pretty well with handling it and only bit himself a few times.

He had therapy yesterday and it went okay. He is starting to exhibit the behaviors that he has at home at therapy. This is going to sound mean, but it is good to see for two reasons. One, this confirms my suspicion that we aren’t bad parents. Two, this allows us to address the issues, rather than simply reporting them and getting ideas. His aggression is getting worse- he bit me a couple of times, Frank got hurt, he bit himself, and hit his therapist in the face, so we are to begin ABC charts- antecedent, behavior, consequence- to see if we can’t nail down what the behavior means and give him a better way of expressing it.

This brings me to my last thought- the holidays. They are fast approaching. They make me nervous. I am concerned for Little Bug and how he will do with DN’s family. I am also concerned with how Little Bug’s cousins will fare as he gets aggressive during play. DN and I had some conversations around this and came up with a strategy. No more than 3 hours at DN’s parent’s house. There will be extra people- including kids there- and it will be stressful for everyone. We will leave when Little Bug is ready to leave if it is before the 3 hour mark. If he gets aggressive or is having a hard time, we will go. We are also going to bring special food for Little Bug as you never know what he will eat. It’s not that he passionately loves things and then one day hates them. It’s more that he is random about what he will eat and we have to make several dinners.

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.

OT

Little Bug's new OT dropped by today to do an assessment. Which of course meant that the things we said he had difficulty with, he didn't and vice versa. Luckily, she doesn't think that we are pathological liars. She told us she sees this all of the time. We talked about the tings he struggles with:

• Getting dressed- It makes those wrestling shows look like child's play
• Safety Issues- he lacks that natural fear that keeps us all safe
• Self Injury- he bites, head bangs, and pinches- why, because to him, its like twirling your hair and is how regulates his system. It doesn't make it any easier to watch as a by stander though.
• Sleep- While going to bed has gotten better since he has given up naps, his quality of sleep sucks. He's very migratory and chatty in sleep and is constantly doing "death rolls"- he grabs you or the blanket, holds on and rolls.
• Clothing issues- besides getting dressed, he has issues with how clothes feel and at times down right refuses to wear them.
• Grocery Stores- too loud, too bright, too many people. This causes him to rock hard in the cart, which in turn leaves bruises on his back

She was incredibly understanding in that she gets that one day what may be an issue is not the next. She was very receptive to our concerns. L is going to come to our house for his visits as most of the things he has difficulty with, you can't do at a therapy center.

He is going to start using a weighted blanket tomorrow night. Hopefully that will increase his quality of sleep and increase his mood and temperament throughout the day. Additionally, he is going to be started on P's and Q's- basically, dog chews for people made from surgical tubing. We had given him a Chewy Grabber, but he destroyed that in less than a month. So we are going to try these. This may sound crazy, but we are not above getting him a safe dog bone to chew on. We just want to keep him from chewing on himself. Finally, she taught us some compressions to get him proprioceptive input that we can use before getting him dressed.

All in all, a pretty good first visit. Little Bug seemed to like her a lot. He loved, loved, loved the compressions. I think that the weighted blanket will certainly help him.