Category: autism parenting

wondering how much my right arm would fetch on eBay

On By caizookaIn autism parenting2 Comments

In putting tax info together, I came across some startlingly realistic numbers. I’m trying to figure out what autism is going to cost financially. What therapies have the highest rate of success? Which therapies are bogus? Which ones are right for O? So many questions and so few answers. He definitely needs ABA therapy. A lot of it. He currently goes 2x/week. I’m finding in research that it recommended that 40 hours/week is necessary to achieve any real results.  Hmm…40 hrs/week at $85/hour. That is $13,600/month. $163,200/year. I could probably find a teachers assistant that wouldn’t have such an hourly rate. Next, we’re finding that a lot of O’s tantrums are most likely caused by his sensory processing disorders. He will need that therapy at least 1/week. That is approximately $140/hour. $560/month. $6720/year. Then there is the gluten free/casein free diet which is not inexpensive. There are the supplements, the regular doctor visits. For other families out there that are encountering this, I wonder how they are coping. How you prioritize what is necessary vs. what is not. I guess that it entirely depends upon each child’s individual needs.

I’m not complaining here. I know that we’re going to find the very best solution possible for O and for our family. I am beginning to think that there are many different kinds and causes of autism. And therefore different coping strategies, different therapies, different cures. Some are better detected earlier, some not. Some manifest themselves in very complex, different ways. Is there a cure? I don’t know. I want to believe that I’m trying my hardest to do everything possible to give O the best space for him to grow in. Seeing him when he is having a tantrum is so painful. I can only imagine the pain that he is in when he is feeling all of the sensory overloads. I am truly afraid to say that I believe that there is a cure because I don’t want to put pressure on him, on me, on our family, for him to be cured of autism. I will love every ounce of him either way.

On a different parenting note…the parent of a 13 year old boy…it seems like girls are entering the picture. These sweet 7th grade girls who were at the 7th grade boys basketball game last night. So entirely adorable in their school color outfits from head to toe. Their cheers for the team. Their contagious enthusiasm. After the big win, they went over to congratulate the boys by hugging them.  Ooooohhhh. Never seen anything as awkward in my life as these boys when these spunky, precious girls came up and hugged them! I was half chuckling at their reactions to the girls, half embarrassed for the boys because it is so far out of their realm, and honestly, thinking a little bit of, ‘hey…hands off my son!’ Never felt that before. That’s just the beginning, isn’t it?!

parent support

On By caizookaIn autism parenting1 Comment

Went to my first autism parent support group tonite. It was really great. Very well organized. Very well lead. I met some really great people. There is something very similar about each of us that were there. We are all dealing with something that is so difficult and so volatile. I realized how similar our paths our and how socially isolating all of this autism can be. Being able to share all of these feelings with people who are walking on this same path with me made me feel less lonely. As similar as our kids have the similar look of autism, we all have the same look of being open to dealing with the unexpected and embracing what is here, now. A look that hangs onto hope, but contains a great amount of sadness. I felt blessed to have those people in that room with me to share their stories and lives with me. I needed to feel that after the past week. It was like a big emotional hug.

I feel right now like I am wearing trifocals. Part of my eyes are trying to focus on the bigger picture, trying to manage everyone. Being case manager to the autism. Part of my eyes are focusing on the here and now…the pieces of food being hurled at me across the room, the fists jabbing at me, the middle school homework needing to be managed, the toddler’s shrieks of joy of learning new words. Also, the focusing on the unmanageable…the inability to control this and being overwhelmed by the day to day. My brain has gone into freeze mode. I have become numb to the hitting of me, but cannot tolerate O hitting E. That just doesn’t seem fair. The tantrums don’t seem to be ending. The seem to be escalating. Don’t know when is coming and when one is going.

There was a great quote on the wall at the Ally meeting tonight: ‘Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow”.’  I am pretty sure that resonated with everyone in the room, and most people on this journey called parenting. Different paths, same journey.

fall down 7 times, get up 8

On By caizookaIn autism parenting1 Comment

I’ve remained so positive and have weathered this storm pretty well. So I thought until yesterday. Yesterday was too much. For whatever reason, O is all of a sudden very difficult to be around. Every single thing becomes a large issue with him. We had such a nice run there of happy behavior and now this. My sweet as honey 4 1/2 year old has turned into an angry, violent, enraged tyrant. I remember now why J and I used to jokingly call him ‘Saddam Hussein Jr’. I can’t wait for this storm to pass. The OCD has overtaken him. Every single thing he has to have control of. His sandwich has to cut into the right shape. Then the sandwich that he demanded he suddenly doesn’t want. He pushes it away and starts screaming. He fixates on eating sugar filled fruit snacks. I tell him that he may have one after he eats some of his sandwich. He flips out. Tell me he hates me. Tells me he hates eating.

The day continued like this yesterday. Until this week he hadn’t had any real fits where he lost control of himself at his schools. Now he is starting to show them what he is made of. Good in that he feels that comfortable with them and they are more accurately to see what we are seeing and help us draw conclusions. Not good in that this has just gotten that much more difficult. We have great communication with his teachers at both of his schools and they have been wonderful in telling us what is working and what isn’t. Hopefully us talking will help fill in the gaps and we can better understand how to help him.

I see this in two parts…One is the ‘what is causing this behavior’. The other is ‘what to do about it when he gets like this’. Ugg. I think that we’re going to have to set up the ‘safe room’. I was hoping and praying that was just a phase and that he had outgrown that terribly destructive behavior. Unfortunately it is back with a vengeance and he is smarter and stronger. (have to make the reference to The Terminator here) By the end of the day yesterday, the I’m-doing-my-best-to-be-patient-with-you attitude was dwindling. When O threw his dinner plate at me was when I was officially done. I just started to cry. I told him that he made me very sad and has hurt my feelings. Of course, this seemed to add fuel to the fire and he hit E. He hit him a lot and I had to pry him off of him. He still wouldn’t stop hitting him. I slapped his hand. He was then enraged. I grabbed E and took him into the other room. O then went over and started to hit J. It was scary because there didn’t seem to be any stopping him (again…The Terminator). Eventually, he managed to calm down. Maybe because I ignored him. Who knows.

I’m trying to monitor my reactions to him to better decipher what reactions work and which ones don’t. I haven’t found one that works yet. Any ideas? I consider myself a resourceful person, but I have found my parenting box completely empty. Unfortunately when I get to that place with O, the other two boys get even less of me than they deserve.

Just watching him when he was so enraged was bewildering. I just don’t know how to guide him. I know that God gave me these 3 blessed souls to love, nurture, and guide through the world, but lately I am wondering if I am doing any of them justice. At one moment last night I had all 3 of them either crying, screaming, or yelling at me. Yep, that would be my low of the day. My high of the day was watching The Bachelor on my computer after the day was done. What a crazy show. Nice to get lost in that goofy world for 2 whole hours. Where the biggest problem seems to be who got the one on one date with Jake!

where are we at?

On By caizookaIn autism parenting1 Comment

This past week was the Seattle Public School RISERS meeting. I hadn’t ever attended such a meeting and I think that when you least expect it, the impact of how much our lives have and will change catches me off guard. Risers are kids that currently have an IEP/special ed and are moving into Kindergarten from Pre-K, or from some other programs to first or second. I gather that a lot of the kids were autism spectrum kids based upon the questions asked by the parents. I thought that I was just going to fact find. I didn’t expect to be affected by the process. The entire system of the Seattle School District is changing and they are mapping out how the IEP kids are going to change with it. Honestly, it’s a stretch to be participating in such vastly different educational worlds. The largest problems at my teenager’s small, private school are currently the lack of middle school recess, the dissolution of the 7th grade volleyball team, and too much homework. The parent group at that school is so amazingly openly committed and caring. When there is an issue, there is a feeling of us working together to solve a problem. Now the world we are entering with Oliver’s education is one where it’s a more ‘us vs. them’ mentality with the school district. With this new system of placement and inclusion, it is hard for us to fathom that they are going to reasonably provide for each of our special ed. student’s needs. I understand some of the parent’s frustration with the lack of answers, but to be honest, they are rewriting an entire system. Lets give it a chance to work. I haven’t ever been in a situation before like that. Some of the parents inability to deal with their own child’s situation was clear as they were directing their anger towards the school district. I know it’s hard not knowing where are kids going to school next year. I hear serious anger and resentment in some of their voices. Alot of those parents have had to fight tooth and nail to get their kids what they need and deserve educationally, and I understand how difficult that must be. I have taken a backseat to all of my kids school situations recently. I used to be involved in the PTA, and am on a board for my younger son’s pre-school, but just trying to manage the varied school experiences and the needs of each of them is enough right now. Too much on some days. I feel incredibly fortunate to have friends and acquaintances at all of my children’s schools who are able to be more involved right now. A lot of them keep me in the loop on the goings ons and I appreciate it a great deal because it takes energy to manage all of that.

One thing that I did learn at the RISERS meeting is that there are only 20 spots for IEP students at the EEU for Kindergarten. It will be entirely lottery based to decide which IEP students will be offered a spot. I am not entirely certain of what our options are if he doesn’t get in. I know that he is not at all ready to enter a regular Kindergarten where there is 1 teacher to approximately 25-30 students. That would be devastating. I am grateful to my dear friend, J, who also attended the meeting and put things into perspective and accentuating the positive in this situation. O is a bright kid and will be fine! Thoughtful, you…thankful me. It seems to be so easy to lose perspective in this world that is too cloudy to navigate at times.

I also attended an Autism 200 seminar last night at Seattle Children’s. It was about being a consumer of autism research. The presenter was great and had great passion and compassion for autism and autistic families. He spoke a lot about being skeptical about data and studies. Something I already am. But, it was interesting to hear a scientific perspective. It seems like no one except for doctors/scientists/parents who are on either the extreme right or extreme left of an issue are willing to branch out and take a stand on what it is we are dealing with in terms of the causes of autism, what makes it better, or if there is a cure. THAT is frustrating for me. To listen to this very enthusiastic scientist speak for 1 hr 45 minutes but at the end of that time not to walk away with something tangible to make my son better is frustrating. Even at the Tessera conference that we attended in the fall, I was so frustrated to hear all of these fantastic, reknowned doctors not be able to tell me what to do is frustrating. I want to know what to do. I want to know why my son can’t sit on his bottom, but has to stand on his head and wedge it into the sofa when watching tv. I want to know what possessed my son to break out of his individual play where he was entirely happy, then to suddenly become enraged and smack a kid who was taunting him. He couldn’t stop hitting this kid. Granted, the kid hit him first and was hitting him back. Then O was so upset that this was happening that he couldn’t stop hitting me. WHY is this happening? I don’t expect anyone to understand who isn’t walking this same path with me, but it is lonely to be the only parent who is dealing with this in an entire gym full of parents and kids. Maybe they are dealing with something just as difficult, or even more, but at that very moment, all I feel is saddness for O that he cannot control himself. He looked at me with fear, anger, and love in his eyes at the same moment. I didn’t get mad at him. I held him close to me, even after he hit me repeatedly, and spoke calmly to him. I’m searching for answers. There doesn’t seem to be any obvious ones. Each one is just another piece to the parenting puzzle.

small comforts

On By caizookaIn autism parenting1 Comment

Getting O ready for school yesterday, I found his beloved ‘dee dees’. It’s what he calls his blankie. It started out as a crib sized fleece blanket but once he attached himself to it, I realized that we had better get a new one as back up. They discontinued it. I bought one similar, but it wasn’t worn in the same way and certainly didn’t smell remotely similar. I kept the new one on top of the washer and just kept on washing and drying it to wear it in. It never caught on so I cut the original ‘Dee dees’ in half, then eventually half again, and again. I think that the last remaining piece is about 1/8th the size of the original. He had all but forgotten about ‘Dee dees’ and had somewhat replaced it with ‘Puff’, a cute little well loved stuffed dog. But, when I showed him that I found ‘Dee dees’, the look of pure love danced in his eyes. That joy continued for the entire day. Apparently he told everyone that he encountered about the resurfacing of ‘Dee dees’. People who he didn’t even know got an earful of this little boy rambling on about something that they didn’t quite understand, but the outpouring of enthusiasm was palpable. You didn’t need to hear the words. Needless to say, ‘Dee dees’ hasn’t left his side since it’s reappearance into our world. Now O carries Puff and Dee dees everywhere with him. He is comforted by them and if there is anything that will provide him comfort, I welcome it with open arms as well.

January 17th…come and gone

On By caizookaIn autism parentingLeave a comment

Just wanted to let you all off the hook.  Day of badness hath come and gone. Back in 1994 on that day, I was in the Northridge earthquake, then in 1995 on the same day the Kobe/Osaka earthquake happened. Several other ‘bad’ things occurred on this day in my life of which I don’t want to recite, so I have taken to hunkering down for one full day. Not wishing anyone I love to be near me and my string of bad luck on this day. When I wake up on January 18th every year, I breathe a sigh of relief nowadays. So, it is with that in which I breathe in, then out slowly. Counting every single blessing.

January 18th, 2010…still breathing freely and happily

different reactions

On By caizookaIn autism parentingLeave a comment

Here is the article that I’ll be referring to:

8 year old boy taken to juvenile detention for tantrum

My mom sent me this article. The article itself is not as eventful as the comments. I am saddened to think that there are so many people think that you could judge this situation from this article. They are willing to send this mom to jail and throw away the key for bad parenting. There is no indication of why this boy was so upset.

Before our autism diagnosis, I probably would have said, ‘the parents might need to set more clear boundaries’. I for sure would have been more judgmental. After what we have endured in the past couple of years with O, my heart bleeds for this mom and child. You just don’t know what kind of trigger set off this reaction. So easy to dismiss this as a case of bad parenting. Kid just needs a spanking. So many comments like this in the article. Yes, perhaps it was a case of this. But, for a child to behave on such a level tells me that there is something else going on. We, as spectators, as their community, need not stand there and criticize as much as we need to try and understand. Not just tolerate, but learn how to be tolerable of and have empathy for. There seem to be several definitions of tolerance.

1. capacity to endure pain or hardship  2. sympathy for beliefs or practices differing from or conflicting with one’s own  3. the act of allowing something  4. the allowable deviation from a standard  5. the capacity of the body to endure a substance or a physiological insult especially with repeated use or exposure 6. relative capacity of an organism to grow or thrive when subjected to an unfavorable environmental factor

It’s interesting after reading the definition of tolerance, re-reading the article, and then re-reading the comments. It makes me think that we are not all on the same page here and more than that, some people aren’t even trying to be any definition of tolerant or compassionate. They are being downright, intentionally intolerant. They have ZERO tolerance.

Thinking back on our trip to the ER in the spring…we (my husband and I) could NOT get O to calm down. We now know that what we were dealing with was an autistic tantrum. At the time it was a screaming, crying, yelling, kicking, getting out of his car seat, trying to get out of the car, 3 year old who was having a 7 hour tantrum. It was scary. We were both so upset. Peter came home from work. Nothing worked so we took him to the ER because we figured there must be something that is medically compromising him to act like this. There was nothing. There were more of these tantrums to follow and I know that we will have more in the future. I only hope and pray that the type of individual that could be so quick to judge is not in my path when I’m trying to calm my son down. I might have to explain what tolerance really means to them.

I’m still working on my own definition of what tolerance is. Being a mom of multi-racial children and being raised bi-racial in a time when there weren’t that many of us gives me a different history and a different perspective on the matter. Being a mom of an autistic child even furthers my capacity of tolerance and trying to understand what tolerance means in a world where tolerance and intolerance seem not to be too different when you’re combatting something you’ve never thought that you’d combat, and are also looking for tolerance and some compassion in those around you. I know that many, many people endure many, many hardships. We ALL need to be more tolerant and less quick to judge, and more willing to ask, ‘are you okay?’ or ‘how can I help?’.

I go back to what my dad told me a lot growing up, ‘Don’t judge a person until you’ve walked a mile in their shoes’. Wise words.

WWMPD (what would Mary Poppins do)

On By caizookaIn autism parenting1 Comment

I hadn’t thought of it, but one of the boys’ caregivers at school, Devona, went thru the Gene Juarez Academy for hair. She came over Saturday and braved the storm with us to cut O’s hair. We tried everything to get O to calm down but it just was what it was…but it is now done. Since Devona knows O and is really easy going, it wasn’t as bad as having a total stranger at a kids hair salon undergo the experience with us. Since it was in our own home, we didn’t have to endure others getting upset. So, in that respect, it was better. In researching this a bit and trying to learn from others experiences, one woman said that she has to give her son a mild sedative to get through it. I wonder if that is where we’ll be headed. If we could get him to take a bath and wash his hair, then I don’t care if his hair is long.

One thing that stuck with me is that he kept on saying that it hurt. She tried the scissors and the clippers both to the same effect. It makes me wonder about pain and autism. I was reading somewhere that one of the factors of not being able to fully identify GI problems in autistic children is that it’s really difficult to discern the severity because pain tends to be different. Some kids sense no pain, and some kids are over sensitive to pain. Thinking back to the whole e.coli incident, I remember thinking that the pain that O is feeling is real. He isn’t imagining it. Would it be expressed in the same nature in another child?  Probably not. I wonder then why getting his haircut is painful.

The rest of the day, Peter and I (and probably Devona for that matter) walked around a bit off balance. Emotionally, the experience left us all drained and wondering what we could do to make it better for him. It just plain sucks to see your kid in any sort of pain, but to have to hold his legs down with your legs and arms and head just to get a haircut just seems so out of whack. It’s kinda the same process for a bath. Hence the reason why we don’t often give baths to O.

O has been extremely violent towards me lately. Okay, me, J, and E. If he doesn’t want to do something he will establish eye contact with you and scream that he hates you. Such difficult words to absorb. I try and repel them and think that it’s not him saying that, it’s just the autism. But, from there either he will change his mind and latch onto something that he wants to partake in, or he kicks, hits, or throws something at me. It makes it difficult, if not impossible for me to interact with him well. I realized that I am very hesitant to be on the floor with him, at his level, trying to interact with him. It takes a certain amount of vulnerability on my part to do so. Looking at the bruises on my body from the last week, I can honestly say that it has set me back from trying to play with him. Being on the defense is not a comforting place to be in in your own home. Maybe the way that I’m reacting to his behavior is making it worse. I am going to focus on that this week. Not trying to change my reaction, but just making note of it. Back to the ABC chart I mentioned last week.

I came across another autism video that I thought that I would share:

http://www.veoh.com/browse/videos/category/educational/watch/e133765ejW4nXnh

It is a really well produced video from Autism Speaks. Alot of the children profiled are far less functional that O. My heart breaks for their families. The reason why I share this is because of the similar journey we embark on. Not any two autistic children are exactly alike. They all have different strengths and weaknesses. Different symptoms. I’m so impressed with these moms determination and hope. It inspires me, doesn’t depress me.

What I noticed about the kids profiled that are similar to O is the screaming, the covering of the ears, spaced out look, in their own world, struggling with everyday activities, and the running.

There was a story of an autistic boy that was killed recently by running out in traffic after escaping from his home. That totally resonated. In the video above they talk about the running, the bolting. When we lived in our previous house, it was a very busy street and I was always completely terrified of him running out in the traffic and getting hit. So many times I threw E in the exersaucer so that I could run after O who found his way out of the house and was running down the street. He has/had no street sense and on a whim could run in front of a car. It is so scary. In our new house we also live on a busy street but O has gotten better with this and the doors are always locked. We’re having a front porch lock made so that if he gets out of the house that there is also the safety net of the front porch being enclosed. It helps a great deal that there is a fence like structure that prevents him from running directly out into the street. The other day we went to The Children’s Museum and he bolted. I lost him twice. I told the workers at the front to please look out for him and do not let him out the exit or the entrance without me. Thank goodness they were so understanding and kind. Emil was wearing a bright yellow vest. I need to get Oliver one, too. They’ll be easier to keep tract of.

So, back to the title of this entry…seriously, Mary Poppins made this all looked so easily. A spoonful of sugar made the medicine go down.  Was that the hardest thing that she seemed to have to contend with? Was that a metaphor for all difficult parenting? I wish that I knew how to sugar coat a haircut for O.

The dreaded haircut

On By caizookaIn autism parenting1 Comment

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

On By caizookaIn autism parenting1 Comment

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.

The space between (Christmas and New Years)

On By caizookaIn autism parentingLeave a comment

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.