The dreaded haircut

There are currently two daily life activities that I dread with O.  That list has been reduced a great deal in the last year, but the haircut and the bath are a no go. Not just a, ‘Mom, Dad, I don’t think that I’m going to do this today’. But, more of a full body scream. Even the notion of ‘hair cut’ elicits such physical pain in him. The same reaction to bathing. And to water. I did a web search on ideas that might make this process less painful for all of us. We have used the electric clippers but that freaked him the heck out. So, we used hair scissors. Interestingly, same exact amount of tantrum and screaming. I thought that maybe the vibration/noise from the clippers were the culprit. So, we then reverted to the clippers because it makes the process quicker, but not more or less painful. It is a two person job. Actually, 3. One person to care for E. One to hold O down and try and distract him, and the other person to do the cutting. So entirely heart-wrenching for all of us involved. We tried every kids hair studio in Seattle. I cannot possibly take him back to any of them. I know that they wouldn’t say that we can’t go back, but it’s so brutal a process that it upsets everyone else. Too much judgement to absorb when all I care about is my son and I getting through the process intact. Sorry at that moment that I didn’t care how the little girl’s curls were turning out in the chair next to us. I’m sorry that my son’s gut wrenching screams upset her. To her mom who passed such judgment upon me, I can only say that, ‘believe me, I’d like for him to not be crying more than anyone in this entire world! I cannot stop this. I’d do anything to help him to stop this and don’t think that I haven’t.’ So…there will be no more hair salons or barbershops in our near future for him. Here’s what we’ve tried…we let him help us to give J haircuts with the clippers, with the scissors. Take him to the barbershop with J and he has no problem watching him get a haircut, but if you even suggest that maybe he get a haircut, forget it. We’ve tried bribery, positive reinforcement, watching a movie during, candy…pretending to cut his stuffed animal’s hair…changed venue to haircutting outside, inside, in the kitchen, in the bathroom…trying to convince him that his hair smells dirty and needs to be either cleaned or cut.  Then the screaming begins and he covers his ears. Guess that he didn’t want to hear about that! I would just say to let it grow, who cares about how long his hair is, but since he will not take a bath, we have keep it short just so that we can keep it clean. We wash it with a wash cloth and also we buy dry shampoo at Sephora.  You have to put it in your hand and apply it from behind so he doesn’t catch on to what you’re doing. God forbid. So, when his hair gets too long, like right now, I start getting that pit in my stomach again.  Here we go…but we just have to do it. He starts to scream and then the hair gets in his mouth and then he is mad, scared, angry, and everything (not) nice. Anyone who is reading this that has any suggestions after reading this, please let me know. We are welcome to suggestions whole heartedly. Part of the reason to write this blog is to learn from others journeys by putting myself out there. There is so much and I’m so entirely grateful for those who have been down this path before me and are willing to share what works and what doesn’t for them.

I came across this video when searching for information about autism and hair cutting ideas. Get your hanky out. Bless these people’s hearts.  I totally get it.

hair cut video

Wish us luck as we embark upon the dreaded haircut in one of the next couple of days. Ugg…I’m totally bracing myself. I just wish that I understood what about the process was so painful and terrifying for him.

I didn’t see the irony in the title of this blog until now…dreaded haircut…dreadlocks (a direction that I hadn’t even considered). I didn’t know that I was so funny 😉

Pure Joy

Tuesdays mornings are just about me and O hanging out. We usually go out and share time doing a one-on-one activity. Today we just took it easy and hung around the house. For those of you who know O, you know how inherently funny he is. He has an amazing imagination and a great sense of humor. Sometimes. When the stars are aligned just so, spending time with O is pure joy. Earlier this morning he was so impulsive. His hugs were too hard. Sounds weird, I know. He wants to hug kindly but then hurts you by hugging too hard. His impulse control sensors are off. It’s a challenge to hug someone when you don’t know if they’re going to hug you back or hurt you. I gave him some space to play on his own this morning and let him come to me. Then we just played. He told me that his dog, who was a boy, is now a girl. His/her name is Puff and she just had a baby. I asked him what Puff’s baby’s name is and he grinned and said, ‘Puff. Puff’s baby girl’s name is Puff.’ What a nut. We started laughing and laughing together about it. It was a brilliant moment. A year ago I would have never, ever thought that he would be able to answer a question without repeating that question to the person asking. He showed zero imagination beyond reenacting lines from movies, word for word. Indeed, most of his vocabulary/words now are still borrowed. But some of it has morphed into his own words. I am seeing more of him lately in his words and it is rewarding.

Working with O’s ABA therapist has been very insightful. She has a great sense of O. I talked to her about O’s behavior issues that we are trying to tackle. She recommended something called the ABCs. It’s a functional behavioral assessment. Tracking the Antecedent, the Behavior, then the Consequence of each behavior. An A-B-C Chart. It’s a way of tracking his behaviors to try and figure out the triggers for the behaviors. I’m looking forward to this process. I did something similar when I started having migraines years ago. I didn’t know what was causing the migraines so I started tracking everything whenever I had a migraine. What I ate, the weather, the barometer reading, mood, etc, etc. It was an extremely effective tool for learning what set the migraines off.  I would love to know what sets O off. At this point it just looks so random.

From here to there

Well, its a new year. I never get caught up in the hubbub of new years resolutions or even of new years for the matter. I love the idea of cleaning and cooking on new years eve to sit, relax, and enjoy new years day with family. I usually try and do some sort of Japanese feast, but this year Peter’s parents were here and we made a grand Egyptian feast. Actually, I was just sous chef to the event. Learned alot though.

The way in which one day O can wake up and be so happy, then turn on a dime is such a huge mystery to me. We went to see Alvin and the Chipmunks The Squeakuel. A high quality movie. We went with my mother in law it was her first outside experience with O ‘flipping out’. He was really unsettled during the movie. Then after the movie he was spacing out. A lot. There was a water fountain at Bellevue Square and he was somewhat mesmerized by it and didn’t want to move from it. Finally, I coerced him to go to the bathroom as he was doing the potty dance. We found a restaurant for lunch and he wouldn’t have it. Almost kicked the table over. The waitress was so cooperative. As soon as the food came, I looked at her and said, ‘I don’t know how long we’re going to last here, so could you please bring the check and some take out plates in case we have to bolt’. Thank goodness she was very helpful and we ended up having to leave early. O was yelling and was physically escalating into a tantrum. I was in a ‘high alert’ parenting mode. I was contemplating which would be the safest route to the car…carrying him up two flights of stairs, and crossing the sky bridge, through the building, up an escalator, over another sky bridge, down an elevator to the car. Or, we could walk across two very busy crosswalks then down the elevator to the car.  I chose the latter because I didn’t have the physical strength to contain him for a long period of time. I was thinking, ‘which is worse, jumping over the sky bridge, or running out in the middle of the intersection’!! We made it to the parking garage. Holding on tight. But then I forgot where I parked the car!!! Went to P5, not there, P4, not there, P3, still not there. Everyone was losing it. Finally found it on P2. Then we got in the car and he would NOT wear his seat belt. I pulled out my book, read a page, and asked him if he was ready then. ‘Okay, I’m ready now’ was his answer. Don’t know what set him off, but I’m beginning to recognize some of the beginning signs of when he might have a tantrum. The covering of the ears is a big one. Even if something isn’t that loud, he covers his ears tightly with his hands. Like he wants to separate himself from the situation. From there he seems to start shouting more than usual. I think that at that point is when we should change venues. I think that my mother in law felt helpless as she watched this whole incident unfold. To understand that someone has autism in theory is very different from watching an autistic tantrum evolve before you and be powerless to it. He started to cover his ears during the movie a lot. I thought that it may have been too loud. That is probably partially true. Another piece to the puzzle.

There has been quite a bit on autism on the news in the past few weeks. It’s hard to decipher what is true and what studies were manipulated to prove a point of view. I’m very suspect about studies. The latest report out is that there is a lack of evidence that special diets work to help in autistic children. What I got out of the article is that there just isn’t enough information to say one way or the other. This is good, because it states that we need more information and more research in this area. Enterocolitis, or leaky gut, as it is called, is this kind of pain that O seems to suffer from. Random, IBS like pain. There are theories on ways to help. But, in researching these theories, I’m constantly looking at the sources of the information. Not very much of it is yet substantiated. I would love to meet someone for whom any of these therapies worked for.

I’ve started to substitute gluten products, like bread, etc, for gluten-free alternatives. Successfully so far!  Today he had gluten-free cereal for breakfast. For lunch, quinoa pasta (it was actually pretty good.  E and I ate it, too!) He even ate some gluten-free bread with his peanut butter and jam sandwich! For dinner gluten free bread, peas, and cheese. Then he saw Daddy eating a delicious macaroni with bechamel sauce that grandma made and he ate some of that.  But, that was the ONLY gluten food that he ate today. That was better than I thought that we’d do today. My goal is to gradually replace all gluten foods with a non-gluten version whenever possible at home.  The challenge is going to be the ‘if I see it, I want it’ way of eating that O (and most kids) have. I am sure that there will be other challenges in this that I haven’t even considered yet. That’s what makes this a challenge.

I don’t want to set a date for the diet, or for anything for that matter because I want to remove the pressure to go all or nothing. I don’t want to feel the sense of urgency to ‘heal’ my son of autism that I am receiving. I think that the last thing that O needs is me being anxious. I have enough anxiety as it is, no extra anxiety please.

What O does need is us to feel confident in our choices. Indeed, there are certain behaviors that we need to work on. The tantrums, the OCD, the eye contact, socialization, etc, etc, the list goes on. It is my belief at this very moment that there is no cure for autism. If there is, I’ll be thrilled, but prove it to me. I continue to look into secretin therapy. I hear so many mixed reviews of it. Some places (websites) state that 85% of the children on the therapy see very positive results. Great! That site states that they actually only take the secretin for 2 weeks, then continue the vitamin therapy. Our doctor researched it a bit and found that the therapy ran $200/month and had to continued indefinitely, and had only found one positive case study. Hmmm…you can tell that I have more to research here.

The space between (Christmas and New Years)

Christmas was good in our house. My parents and my sister came over and the kids, and adults, all got to just relax. The joy of Christmas for me is not in the day of Christmas itself. I’m trying to separate the joy of Christmas, the meaning of Christmas, and the American gift giving, santa-clad holiday. All wonderful on many, many levels. But, to combine them into one day doesn’t do the others justice. They need to be separated into three days. I always cry at the end of Christmas Day. It seems like my life (and most peoples) for the past month+ has been defined by what I’m going to squeeze in to get what for whom. Life gets whirling out of control. To plan meals for the holidays, buying everything ahead of time, is just bonus pressure. Anticipating visiting places. What do we need to pack? Who is carrying what? Attending to everyone’s every need of the moment. Anticipating visitors. What do they need? Do we have bed sheets that actually fit that bed? Will it be okay? Do they have dietary restrictions? When the pace is nonstop like that you get used to it. After the holiday is over is when I fall apart. To be going at such a pace that stops so abruptly is jarring. On the other side of the tears it is refreshing, too. Glad to be able to find time to do something different again. I always come out of Christmas thinking about what I’m not going to do next year to make it easier. It never ends up that way. It just seems to be more complex, yet also so much more meaningful each year as well. Goal for next year: to maintain perspective.

J got the flu a few days before the holiday. It was yucky and so sad to see him so depleted for 2 full days. Then O started his screaming about his stomach soon after. That finally ended up to a trip to the ER yesterday. The paper that they brought home said, ‘diagnosis: abdominal pain’. Really?!!! NSS (if you know what that stands for then you get it. If not, email me;)) I worry about that little guy with this whole GI distress thing. GI abnormalities and inexplicable pain are quite common in autistic children. A friend of mine pointed out to me that his symptoms sound like IBS. I hadn’t thought of that before but it sounds similar. We are supposed to complete this series of tests of stool samples, to test for intestinal flora, but I haven’t been able to get myself to do it yet. It involves inducing pain, by giving him a laxative, to give different kinds of samples over a 24 hour period. I know that it would be better in the long run to have such information, but I think that we have to further evaluate at what risk. His initial reaction to anything right now is screaming. It is horrible on so many levels to hear him screaming.

Again, O has been spacing out a lot lately. Yes, he is getting better in so many amazing ways with his social skills therapies and numerous wonderful teachers that adore him and have so much to offer him. But, as a mom, watching your child here, but not here, is so upsetting. I feel his presence, but I don’t. I finally realized why he won’t respond to me in the car. He is always staring out the window, spacing out, in a far away land that I cannot access, no matter how hard I try. I realized that he is amused with the red lights. The brake lights of the cars ahead of us. I asked him one day, what he is looking at and for once he didn’t say, ‘see the aliens, mom!’, but he said, I’m looking at all of the red lights. They are beautiful!’ A-ha, yes, indeed, O, they are, thank you for sharing that! One more piece to the puzzle. I wonder how many pieces this puzzle is going to end up being. You don’t think about how big a puzzle you are signing up for when you have a child. 500 piece? 5000 piece? 5 million piece? Regardless, it is many, many pieces. I don’t think that we ever will see the full puzzle completed, with all of its pieces. The more that I ponder this, the more that I think that we see the full puzzle daily, but it compiles differently sometimes.

I don’t know if you are one of the lucky ones to have gotten to participate in an O related birthday event. He LOVES birthdays. He loves the candles, the song, the presents, the cake, and the sheer excitement of the event. It is euphoric to be at a birthday with O. He thinks that everyday is a birthday for someone. Some days he tells me that it is my birthday. That is always a joyous day! When everyone was asking him what he wanted for Christmas, as every adult asks every kid, he responded, ‘presents’. But the way in which he responded was so cute, his voice told you that he had no other expectations, and isn’t that what every kid wants. I don’t think that he’ll ever compare himself to any other kid. Gosh, I sure hope not. He is too original to be like everyone else!

A friend of mine gave me the Jenny McCarthy book, ‘Louder Than Words’ about her journey of her son’s autism. It is so interesting to read of others journeys along similar paths. I always learn so much about others journeys and lessons learned and am so thankful that there are others who are going thru this with me and are willing to share. I feel a deep sense of camaraderie with others on similar journeys. I do wish that it was better written or at least better edited…but the honesty with which it is written is beautiful. I am also reading a book called ‘With the Light’ which is a Japanese manga that was originally entitled ‘Hikaru to tomo ni’. It was made into a Japanese drama a few years ago. (not many people know my deep love of a good Japanese drama!). I’ve been reading the book and started to watch the drama as well. It is really, really interesting. I’m only a few episodes in (most Japanese renzoku dramas are 13 episodes long), but I so relate to the journey of this woman and her son. It’ll be interesting to see the different social nuances of a culture handling a child that doesn’t fit in, compared to raising a child in our society where you would think that they would fit in more. Hmm…a lot to ponder here.