jump to navigation

what to google? September 28, 2010

Posted by caizooka in autism, autism parenting.
Tags: , , ,
add a comment

So, I’m having a devil of a time with E (2 1/2) who picks up every bad (and good!) thing that O or J says and does. I’ve slacked off a lot more than I would like with O because I try and give him space to get himself out of situations on his own and with assistance and try not to focus on the peripheral. When he loses control, he really doesn’t know what he is doing. In those times, he uses words like, ‘shut up’ ‘stupid’. Great. He normally doesn’t use them in everyday context. Only when he can’t handle himself. Quite frankly, I’m doing what I said that I would never do…different rules for different kids! Yep, I’ve become a massive hypocrite!

E (aka Mr. SmartPants) picks up absolutely everything that O and his 13 year old brother, J say. And, because his wheels are churning at such a rate and in such the right direction for him, he uses everything in perfect context, perfect tone, and looks us right in the eye when uttering these words. Yep, told me, while looking me in the eye and squinted at me with the devil in his eye, ‘shut your face, Mom!’. Seriously, that was such a shocker. The first time. Now it’s become our new normal. Just lowering the bar, day by day, by day.

Oh, yes, we have tried the ignoring phase. Tried the ‘oh, lets use nicer words, pal’ phase. Tried the time out. Been thru my entire, well versed parenting repertoire and have come to the conclusion that I don’t know squat! Oh, I have recently gone hoarse on a day or two because of the ‘shouting’ phase. That, also, didn’t work. DARNIT!!!!! And, I did the lemon squirt bottle in the mouth phase. Of course, that morphed into the ‘shut your face, Mom!’ followed by an immediate ‘can I have lemon juice in my mouth now? It’s spicy, Mom!’ phase. Delightful! Not to mention the looks of people wondering why I am carrying around a lemon juice bottle with me.

I’ve googled and googled. But, what to google?  ‘discipline toddler who will not listen’ ‘how to discipline toddler of autistic older brother’ ‘how to discipline toddler of autistic brother and teenager brother’ ‘how to discipline toddler of 5 year old autistic OCD brother and teenager who thinks it’s hysterical to get a rise out of his parents by making his brothers say inappropriate things’. Okay…tried all of that…and I must say that I must scoff at the suggestions of what to do for our situation. ‘simply tell your child that you don’t like their words’, ‘ignore this behavior, it’ll go away’, etc, etc…

I’m thinking to get the tabasco out. Bad word = a little squirt O’tabasco. Is that really bad?!!! J said one bad word when he was 3. I washed his mouth out with soap. Never again. Situation over. Done. He also responded well to time out and saying, ‘No thank you!’.

I know that E is going to be extremely successful in whatever he decides to do and set his sight on, but he is sure a tough nugget to raise.

Over the weekend we went to Minneapolis to my sister’s wedding. The wedding was lovely. The city and all of the events of the wedding were marvelous. Yet, E elevated to a whole nuther level of cuckoo. I think that we enter situations carefully anticipating how O is going to do. What we can do to help him get through situations. What do we need? What GF foods do we need to prepare? What kind of situation is it? Who is going to be there? Are we going to have the right coverage for 1:1 attention for him. J had an awesome time because his cousins as well as my sister’s husband’s nephews, and their new cousins had a fantastic time together. E is the one that always catches me off guard. He is the one that I guess that I expect will go with the flow as he is boy #3. In my family, girl #3 was the most pleasant and always came along to everyone else’s events gladly and was always so easy to be around and take places. This is not what I expected. Everyone says that their 3rd child is always so chill and go with the flow. Hmmm….not quite seeing that yet. Maybe soon?

Can I just say that The Mall of America is a nutty place. Loved it and hated it all in the same breath of recirculated, temperature controlled air. Just to paint the picture for ya…we walk in and went immediately to the Nickelodeon Universe. Holy cow! In the middle of the mall is the LOUDEST, funnest, LOUDEST, craziest, LOUDEST place on earth. It was insane. The older kids had the most fab time ever. They got unlimited ride wrist bracelets and were gone, gone, gone…not even breaking for lunch. My sister took them smoothies to get them some nutrients, knowing that they weren’t going to sacrifice the time to sit down for a real meal. Good call! I looked at O thinking that he might be about to wig out, but for some odd reason, he was just bee bopping along, skipping to his own tune, enjoying life. E was in the stroller, screaming and yelling that he wanted to get out. Uggg…this mommy’s brain simply could not filter out all of the sounds. The layers of noise were too darned much. Finally, after a couple of hours of walking around the MoA, Peter took E back to the hotel to get him to sleep. Then I could focus on O. We had a great time after that.

Advertisements

apple, oh how I love thee September 16, 2010

Posted by caizooka in autism, autism parenting.
Tags: , , ,
1 comment so far

It’s interesting the press that the iPad and autism has gotten recently. See the article. O loves it. E loves it. J loves it. Our exchange student, Hiroki, loves it. We went to the Hood Canal this past weekend. Car rides have not been our strong suit lately and quite honestly, have prevented us from really doing that much in the way of family outings or vacations. Peter stayed up late the night before heading out and updated our old iPhones with all of the kids apps and a few kids movies. Brilliant! I held out as long as possible, but soon enough the whining got ahold of me, I handed each of them an iPhone. Blissful quiet! Angry Birds, Fruit Ninja, Animals…they love some of these apps!

Wow. How times have changed. How being a parent of a 3rd child (11 1/2 years after the first) really freaks me out about how much I have lowered my standards, or rather, rearranged them. But, I wonder perhaps how unrealistic my initial expectations were. I was younger then. Just 26 years old. So entirely naive. Became a single mom at 28 years old. Life was so different then. My oldest son was so different. I could not have raised either of the little guys in the same situation. Their personalities would not have tolerated it. That was not their place in life. Goes to show how much we have to just trust and have faith that it will just all happen as it’s supposed to. Although I never thought that at the time, I now understand that completely and I love that. Never in a million years would I have allowed my oldest son to play with a video game, a handheld device, anything of that nature. Now my 5 year old and 2 year old play with iPads, iPods, iPhones, iEverything. They watch movies and shows of which I would never have let my oldest watch at their ages. Their world is different. Their places in the family are different. Their point of views and their perspectives will be different from each other. They will each bring something so entirely different to their futures because of their birth order, because of their place in our family, and because of their genuinely unique differences.

It’s fun being one of 3 siblings. All girls. We are all as different as night and day. We all 3 have different yet valued relationships with each other and with our parents. Neither any better than the other, just really different. I love how that we are now all 30-40ish and that we have grown more so into who we are, accepted it, and have embraced what we are, and recognized what we have to offer, our short comings, and mostly our own sense of self-awareness. With self-awareness comes great strength. I think that I walked around more than half of my life completely and totally unself-aware. Glad to meet myself. May have taken 40 years, but I’m catching up! Man, I sure do hope my kids become self-aware much earlier in their lives than I did.

O, the Kindergartener September 8, 2010

Posted by caizooka in autism, autism parenting.
Tags: , ,
4 comments

Oh, our sweet O started Kindergarten this morning. Happy to report that there were more smiles than tears! After getting the oldest and youngest off to school by 8:15, it was time to focus on O. At 9, we were waiting for the bus. Darn. The bus never came! You know how the first day of school is for transportation. I’m sure that it’ll be sorted out soon. But, try telling an autistic child that on the first day of Kindergarten! At first he was completely inflexible and stomping his feet. Then, all of a sudden, he said, ‘Ok, we can go in Mommy’s car today, but tomorrow we are going on the bus, Okay, Dad” Whew. Crisis averted. Mommy, Daddy, and O got in the car, went to the school, got to the classroom. Everything still going smoothly! We found his desk, put his things in his locker. There are 5 kids in his class. Very, very cute kids. The teacher is fabulous and O is very responsive to her voice. I was introducing O to the little boy sitting to his left. O crossed his arms and said, ‘humpf’. Majorly over exaggerated frown. His tone told me that either he was going to hit someone or hug someone. His body language basically put an exclamation point on the situation. I took a visual inventory of the little boy to his left. (you know when you rent a car you have a once over to see if there are any dents, parts missing, etc…kinda like that) Made a mental note that he did have a gash on his right cheek. So, when I pick O up later, I’ll know that wasn’t caused by him! The 2nd bell ran and we told him that was the bell for the mommies and daddies to leave the room. He looked fine when we left. After partaking in the parent coffee in the lunch room, we swung back the room to have a peek. The teacher was getting the kids to sit down on their carpets for circle time. O was walking around the room. Of course I tell Peter, ‘Oh, no…O’swalking around the room!’ Peter responds, ‘hey, he is not screaming at the top of his lungs…that is successful’. So, it seems that our new parenting standard has been reset. Again. We just keep on lowering our standards 😉 Just kidding. Can’t wait to hear how his day went!

Oh…and a big, huge THANK YOU to our wonderfully kind yard waste collector, Rodney…who (yet again) realized that we forgot to take our yard waste and trash out and took them out for us. It certainly does take a village!

two days till blast off September 6, 2010

Posted by caizooka in autism, autism parenting.
Tags: , , ,
add a comment

Internal and external stress at a peak. Nails bitten. Everyone freaking out. Noise level at an all time high. Yep, it’s the week before school starts. Julian starts tomorrow. Oliver on Wednesday. Can I just say that the kids are in truly bad form this past week. I always try and focus on the good and work through the negative but these past few days that has been a true challenge!

I went to a fantastic seminar this past weekend sponsored by FEAT. A very respected lawyer in the Seattle Special Education community, Howard C. Powers, spoke on the whole IEP process and making the system work for you and your child. It was fascinating! I learned so much not only from the information presented, but also from the very well versed audience. Many parents who have a better hold of this system than I, and also an extremely informative staff of FEAT of whom asked some truly poignant questions. It was a very timely lecture to attend as we jump into the Seattle School District full bore this week. We are placing a great deal of our faith in the system to care the best for our child and his education. Although we have yet to encounter anything remotely similar to what some of these parents have had to endure, it was definitely good information to have in store for the years to come. It really opened my eyes to the process of IEPs and Special Education.

One piece of the IEP that I didn’t know existed was the ‘parental concerns regarding their child’s education’. Yes, you can submit a statement of YOUR concerns of your child’s education. There are so many critical pieces to the IEP. For the process to be successful, every part needs to be in place. The many different types of evaluations, the people involved, the absolute necessity to have everything in writing pertaining to your child’s education, the wording, the need for knowledge of what is available for your child, the need for knowledge of all of the parameters of your child’s disability, when to sign what and when not to sign anything. You could get lost in all of it, but ever so coincidently, I ran into a friend the day after this conference who is a Special Education Consultant and after telling her of the amazing information I took in at this conference, she told me how far kindness will take you in this process. Indeed! Granted, if I had to endure some of the situations that some of these parents have had to endure, I would be less than inviting in my tone. I know that a great portion of the calls that my friend receives are from parents who are mad and want to hold someone accountable for the disservice that they have received. Ugg…I get that, too. First and foremost, we should assume that everyone wants the best for our children and their education. I believe that. There is so much that is just plain subjective when measuring and evaluating the social skills of a child. I don’t want to enter this realm skeptical. We have no reason to be skeptical and have received amazingly appropriate services thus far. Cross your fingers that it remains the case for us!

Please not the feet! August 25, 2010

Posted by caizooka in autism, autism parenting.
Tags: , ,
3 comments

Okay, what happened? Did someone change the rules and not tell me? I feel like I’ve been left out of the loop. I’m losing things that I need. I lost my parking ticket today so I got to pay the lost ticket fee at the parking garage. Fortunately the dude cut me some slack and I only had to pay half.  But still…. Oliver was doing beautifully and then all of a sudden…POW! He’s freaking out. Jumping on my feet ALL THE TIME. I have issues with people jumping, stomping, amd stepping on my feet. Come to find out that it’s all part of the sensory integration stuff that he’s dealing with.  (yep, apparently Oliver is a ‘sensory seeker’) He has seem a bit off sensory-wise this past week. Purposefully running into things. Ramming his head into the sofa. Jumping too hard. Pushing too much. Stomping too much. Unfortunately, my feet must have been in the way of all of that. I should invest in some steel toe shoes. Do you think that Prada makes any? I’ll have to check my sources on that.

When you don’t sugar coat everything for Oliver when he is in one of these states, the world really comes undone. Well, excuse ME for losing my patience and telling him ‘No!’ Boy, did I pay the price for that. Yep, he told me that I’m stupid and that he hates me. On a normal day, I could shrug it off, but when I’m warn down, that hurt. Fortunately I knew better than to react to his words. That would have taken things to a whole nuther level indeed. Needn’t go there today.

I see all of the benefits for Emil having a brother with special needs. He is going to have such empathy for others and such a very unique perspective in the world. But, in the meantime, he yells, ‘shut up!’ when he hears something that he doesn’t want to hear. Then he glares at me as if egging me on. He squints as if saying, ‘I just dare you to get mad at me’. I guess that because I’ve blocked out when Oliver starts yelling slanderous, hurtful words and try and see what the bigger picture is, not what the behavior is. Emil soaks all of that in and realized that Oliver doesn’t get in trouble for saying such things, therefore he shouldn’t either. Yikes! What kind of machine do we have in motion here? I’m finding myself running out of ideas and seemingly allowing my children to run this roost.

We have had a glorious summer, but I can’t wait til school starts back up and we are all on schedules. Although it is terrifying at the same time, it will certainly be nice to get into a groovy groove.

game on August 12, 2010

Posted by caizooka in autism, autism parenting.
Tags: , , ,
2 comments

I guess that I’ve known that all of this hard work and fighting for my kid and his deserved education was going to start. I’ve been living a bit in a fantasy world with rose colored glasses. It’s been great!

I was asking one of the moms at Oliver’s school about View Ridge as her older child attends there and she also has a child entering Kindergarten as well. She said that it’s such a fantastic school then asked me if we’ve attended any of the Kindergarten summer get togethers. Hmmm…what get togethers?!!! I haven’t heard about them. I’m sure that it’s just a total oversight to not include the special ed Kindergarteners. But, still…I would have hoped.

When I got to my car I started to cry. Yep, time to dust off those fighting gloves that I wore as a single mom advocating for my older son. Time to rally the troops. It’s game time! I don’t want to be pushy and self-righteous. I just want the opportunities that are afforded regular kids to extend to mine. I can tell that this not going to be a coasting parenting ride. That’s okay, I’m ready. I enjoyed the honeymoon phase. I didn’t know that there was such a phase in raising a child with autism. I think that I just declared it over. Game on!

laughing so hard my side hurts August 7, 2010

Posted by caizooka in autism, autism parenting.
Tags: , , ,
1 comment so far

Anyone who knows Oliver can’t help but chuckle in his presence. He is funny. Absolutely downright hysterical at times. I think that what is so funny is that he isn’t trying to be funny. He is so sincere but playful at the same time. It’s an interesting combination that can create the perfect storm of laughter that communicates beautifully to all ages and senses of humor.

Today, his teacher at adventure camp asked him what was on his leg. It looked like blood, but in fact it was a drawn on lightening bolt with a red marker. He said, ‘Oh, that is just my lightening bolt of power!’ But, it’s not just the words, it’s the sincerity in which he speaks, and the body language that he uses. He started to talk about his ‘super bark’ in which he goes into great detail about how everyone needs to stand back because the blast is powerful, but he turns his head to the side and shouts, ‘SQUIRREL!’. Then he resumed without pause to his conversation about the ‘super bark’. Man, oh, man. If you are up on your modern kids movies, you’ll recognize that the whole lightening bolt of power and super bark are from the movie, ‘Bolt’, and the ‘squirrel!’ line is from the movie, ‘Up’. The lightening bolt on his leg was drawn to mimic that of Bolt, the dog from the movie with the super bark. Clever, Oliver, very clever.

A lot of what he says is borrowed directly from movies. It is called scripting or delayed echolalia. Oliver uses scripts from movies, shows, or from conversations that he hear. He borrows the tone, inflection, words, and emphasis directly. Oliver does a very clever job of melding together a variety of shows, movies, my words, Peter’s words, Grandma’s words, or Julian’s words. It’s been good for him to be able to utilize others’ words and voices to express his own ideas. We’ve gotten to know a lot about him and it is easier to see his personality emerging from this. The words are still borrowed, his sense of humor and brilliance is shining thru more and more. He manages to stitch together lines from movies to make them his own voice if you listen well.

The way in which he sees the world is clever, and funny, and fun. I love how in this modern world of an unbearable fast past and multiple complexities where we have so little time to stop and listen, that Oliver not only forces you to stop in your very tracks and hear him, but allows you to laugh. I am beginning understand why he doesn’t get lost in our world and creates his own. I am beginning to totally get that. I love laughing with him. He is one hysterical guy.

basking in the glory of summer August 4, 2010

Posted by caizooka in autism, autism parenting.
Tags: , ,
add a comment

After a very busy June that entailed much fun…a vacation, a couple of birthdays, and lots of other activities, it is now life back to normal. Oliver had an amazing time with our babysitter when we were gone. I think that it was good for him to get used to something/someone different for a short time. The first whole week since getting back from vacation was blissful for all of us. Oliver got so much attention from my family in town, too. He laughed, he smiled, he talked and talked and talked. He was a beacon of light and wonder. Everyone marveled at him and he basked in the glory of the attention.

Oliver has been getting along really well with his brothers. It is so sweet how he embodies a certain character when he is ‘big brother’. He takes on a certain tone and demeanor when he is trying to teach Emil something. This past week they got new squirt bottles to play with. Yes, their horribly mean mom refuses to buy them anything that resembles a gun… Oliver very happily taught Emil how to successfully utilize a spray bottle. How to fill it. How to point it at someone. How to shoot at Julian and his friends. He talks with the sincerity of someone who has been empowered to pass on the very delicate secret of ‘how to use a squirt bottle’ to the next generation. Very, very serious. Emil listens with conviction and responds accordingly. “okay, Oliver”. It is music to this mom’s ears.

Oliver has also been attending an adventure camp of which has been organized by some very gifted ABA teachers. Wow, they have really made Olivers’ summer soar. They meet at local parks and have a very organized schedule and curriculum. Oliver has made some really nice friends through this camp. Some of whom appear to be cut from a similar cloth as he. It is fascinating to see how different, yet how similar autism affects children. Each child in this camp is autistic, but each so different and so entirely unique. It was a great experience to see my son speak in his own language fluently amongst his peers. He flourished in the company of friends who belong to and communicate in his own world. He seemed to be empowered by this group. I will definitely continue some of these relationships with the other families.

the thief of joy is comparison June 26, 2010

Posted by caizooka in autism, autism parenting.
Tags: , , , ,
2 comments

Oh, how I ponder this quote. Often.  When it is just us in our house, with no external influences or judgments, joy is imminent. Sure, there are the difficulties that ensue upon us that we muddle through and eventually find even more joy. It’s when we compare ourselves to others that we start to question the joy that we are feeling. Why do we let that happen?

Yesterday was Oliver’s graduation from his Pre-K class. It seems like we were just sitting in that same room watching Julian graduate. That was 8 years ago!  To preface the situation leading into graduation, our week has consisted of total craziness. Emil has been sick with a fever and has been screaming. (Yes, literally 3 full days of brain numbing screaming and parental worry will zap the life right out of you!)  It was also the first week of our incoming 8th grader’s summer break where the tone of the summer is set. Buttons pushed, check; voices escalated, check; utter teenage madness, check; questioning what I’m even doing as a parent, check check. We had Oliver’s Pre-K graduation from his other school program on Tuesday and it was great. He wore his purple graduation cap with his peers and was seemingly blissful about the whole situation. It was outside on a sunny day with just a few classmates and parents and teachers.

I don’t know why, but Oliver has been amazing lately. Great about talking through disappointments and changes. I’m so proud of him and thoroughly happy with his progress. I really thought that we had struck some magic cosmic balance in our world. He is doing fabulously well on his gluten-free diet, too. Before he tries anything new he asks, ‘Is this gluten-free? Because gluten-4 makes my tummy hurt’. And, if something does have gluten in it and he can’t have it he has been fine with that. He’s done far better than I would have ever imagined.

So, we went to Oliver’s graduation last night expecting that he’d just be fine. That turned out not to be the case. He had a complete meltdown and would not participate in the least. We had the perfect combination to get in him through it with Daddy and his favorite teacher guiding him but it was just not going to happen. We spent most of the time in the classroom while the graduation was going on in the other room. Finally, he managed to go and watch with some serious patience and gentle guidance of his dearest teacher, Akiko, and also Daddy.

I was/am so disappointed in myself for being so overconfident. Thinking that he is ‘better’ lately. Not anticipating that he needed to be there a couple of hours early and coaxed through the entire process. What was I thinking?! I clearly just plain wasn’t thinking straight. But, what I let myself do was self-destruct. I rarely cry in public but I couldn’t seem to turn the faucet off.  It started when I saw all of the graduates in their caps and gowns with their smiles in tact getting a group photo taken together underneath the brilliant banner that read, ‘CLASS OF 2010’.  They had all been creating together for the past few weeks in preparations for the event. All of the moms and dads were proudly taking photos of their kids. Oliver was in the bathroom crying and refusing to put on his cap and gown or even participate. Ugg…another group photo without Oliver in it. Already he isn’t in any of the class photos because he wouldn’t join in. So, here it is, MY expectation that he would participate. Leave a record that he participated and was a part of the group. Next there was his empty chair in the front row that read, ‘Oliver’. More tears. Then there was the look of other parents that said ‘what’s wrong with your kid?’ (not many of them know about Oliver’s autism) I felt the waves of future sadness and grief coming at me full force. Why did I have to go there in my head?! Sure there is a certain amount of grieving that takes place in this process of acceptance, but if I had removed the comparison to others from the equation, as well as the ridiculous expectation that I had set up, this might have been a fine occasion.

After removing myself from the situation to have a mini sob fest, I returned to sit with my husband, my kids, and my parents. The teachers handed out long stemmed red roses that had been lovingly wrapped in lavender tissue and a ribbon. The kids gave them to their moms and said, ‘thank you’. The look on Oliver’s face when he handed me his rose was that of pure love and pride. It is a memory that no group photo could capture and will be forever ingrained in my heart. It was at that second that I felt like a total idiot. Why did I have to let the doubt, the comparison, the expectations in?! He is perfect just being Oliver. I have to revisit my goal in parenting…to help and guide my children to be the very best THEM that they can be. Yep, I think that it boils down to just this. Seek the joy and embrace it!

Oliver the Shaman? June 17, 2010

Posted by caizooka in autism, autism parenting.
Tags: , , ,
1 comment so far

Thanks to the direction of a few friends, I watched a fascinating special on PBS, Independent Lens called ‘The Horse Boy“.

Honestly, the beginning was intense and quite painful to watch. A sweet autistic boy screaming uncontrollably on a mountain top in Mongolia. Next you see the parents getting whipped whilst kneeling on the bare ground, by the shaman; but are forced to withhold screaming. Brutal. Are they crazy? I don’t follow. I am starting to dismiss this family as ‘nuts’, but I keep watching because I am intrigued and trying to fathom why someone would do this to themselves. I soon catch on. I understand the primal need to do ANYTHING to help your child. I don’t really connect with the mom at first because she seems distant and removed. But, I end up crying with them. Uncontrollably. There is a definite change in the boy in the documentary where the boy went from screaming to playing and laughing. Did they just push this kid so hard that he cracked and gave in to it?

Throughout the documentary, they wrangle with many, many issues. Rowan had a really difficult time on their journey. He refused to ride the horse, and opted for the bus instead. He had potty issues. He went into this having potty training issues, as do many autistic children. The family heads through the interior of Mongolia in an old VW bus, ultimately arriving at a nomadic encampment at a tribe called the Duka Tribe. Apparently they are known to have unique healing properties. They have to travel entirely by horse from then on. It’s hard for the parents to get Rowan on the horse. Rowan had been battling riding on a horse the entire trip. He finally liked the horse again. I’m happily surprised to connect with Rowan’s mom. I see that she is made from incredibly strong, versatile fabric. She plows through and guides Rowan in a sweet and gentle way.

The finally met with the Duka Tribe’s shaman and he had a very fascinating connection with Rowan. He told them that Rowan would become gradually less autistic over the next 3 years and that the potty issues would end today. And, indeed, it did. When they rode away and down the mountain, that was when everything began to change. He actually pooped on the potty. (for those of us whom have had to struggle with this, you know what a true triumph this is!) He was running around playing with the other kids. He actually bonded with their guides’ son who was about his same age. They didn’t speak a common language, but they were communicating. He was enjoying the horse riding with his dad again. There appeared to be a breakthrough.

People that are shamans typically have had a life of suffering from neuropsychiatric symptoms. They have special senses and feelings that guide them differently than others. They aren’t elected shaman from birth, they become it because of their symptoms and their clarity. They become guides for their tribes. I’m not surprised after watching this and really taking a significant amount of time to wrap my brain around this concept to see the truly unique connection between the shaman and Rowan. It sparked a further interest in me to seek how other cultures accept (or deny) people whom are different neuro-psychologically. One psychologist in the documentary talked about autism and how some cultures determined that these people have an illness. Other cultures say that this is simply a different type of person and there is a prescribed role in society for them. He further elaborates that we are one of the few societies that treat neurological and psychiatric differences by creating institutions where we actually separate people completely from society. This makes me think and think and think… are we trying to change them to be something that they innately are not? Trying to make them like us. This really offers some pause.

I do love Rowan’s parents sense of wonder and joy. It is captivating and true. I sympathize with them when I see their son Rowan struggling. It’s taken me a long time to ponder how to write this blog entry. I hadn’t been able to figure out why until now. I didn’t understand how the parents could be so removed, yet so connected at the same time. I’ve had some clarity on that lately. I realize how numb to the chaos I have become. Sometimes it’s too much. I simply can’t react to every plate being hurled at my head, every insult screamed at me, every stressful situation that I have to choose how to navigate. I’m numb to it, and it saddens me. Don’t get me wrong, I feel happiness and everything else, but when chaos ensues, I have to filter differently. I get now why those parents appear to be disconnected. It’s a matter of survival. To be able to see clearly through the haze. So, when Rowan is having a meltdown, I now feel his parents’ panic and fear that I feel when Oliver is having a meltdown. Rowan was diagnosed with autism when he was 2 and he was 5 in the documentary so the parents had 3 years of dealing with their reality. (we’ve had less than one year since Oliver’s diagnosis)

The dad breaks down at one point and questions himself. Did he make Rowan do too much? We all question our decisions and reasoning when our parenting decisions aren’t working out as we had hoped. Rowan’s dad, Rupert is honest and true to himself. I love it when he says that he’s a better father because of Rowan’s autism. He further explains that Rowan’s autism forced him to listen to his son. I can tell you that I wish that more parents were more in touch with their children like this. To not take them for granted and to stop and listen and learn to love your child. What a wonderful thing.

The dad, Rupert, asked in the end of the documentary if Rowan was cured of his autism. No, he answered. But, he was healed of some of the symptoms of it. And, from the outside looking in, it appeared as if Rowan, and his parents looked happier. That is what we are all striving for, isn’t it?

a trip to the pet store June 1, 2010

Posted by caizooka in autism, autism parenting.
Tags: , ,
1 comment so far

We’re having a string of good days here!  Friday, Mom and I took Emil and Ollie to the pet store for an outing. It was pouring rain out and we needed a low key adventure that did not involve a lot of people and too much noise (the less external sensory input the better!). It was great fun! Emil ran around like the crazy dude that he is. He most liked the mini-hamster. Gross. We spent a great deal of time watching the dogs being groomed, the lady cleaning out the cat cages, and the guy removing the dead fish from the fish tanks. Oliver’s birthday is coming up this month and he’s being really funny about it. He keeps on telling different people what he’s getting for his birthday. Yesterday he told Teacher Heather that he’s getting a HUGE trampoline for his birthday. Hmmm…news to me! When we were at the pet store, he started to get fixated on buying a fish tank with real, live fish in it. So, I said, maybe for your birthday.  That wasn’t met with a warm reception. I thought that a meltdown was coming on. The body language said, ‘meltdown is coming’. I don’t know why, but I was able to coax him out of it by asking him to help me choose a dog treat for Libby. For some miraculous reason, he complied. It’s so strange how on some days he’s so easy to redirect, and on others you can’t redirect him at all.

The funniest story…when we were watching the cat cages get cleaned out, a true cat lady came up and started talking to Oliver. Oliver was in a super chatty mood and was enthralled with the cats. The lady asked Oliver if he had any cats. He went into a litany about our cats. This is most funny because we have no cats! He and the cooky cat lady were one with each other as they discussed their cats. But then Oliver said that his mommy’s cats died 4 weeks ago. Cooky cat lady was devastated!

a biomedical approach to autism May 23, 2010

Posted by caizooka in autism, autism parenting.
Tags: , , , , ,
1 comment so far

I went to a great meeting yesterday morning of very inspired moms. Wow. I was definitely the rookie autism mom of the group. They were all well versed in umpteen autism therapies. I can’t even begin to explain how overwhelming this was. First of all, I feel guilty sometimes that we didn’t get Oliver an early diagnosis, or atleast involved in different therapies to start with. Then, I still keep on glancing at that white autism speaks first 100 days folder that is staring at me from the shelf with a huge layer of dust on it…fearful of being touched.   Felt a bit like a fish out of water at first, but then I asked a few (stupid) basic questions and the pace slowed down. Whew. I hope I didn’t frustrate them with my newness of this all. They are a wicked smart and very inspired bunch. I’m superbly impressed by their dedication to their families and to their vision of autism in their lives. I had heard a lot of the therapies that they were talking about in theory, so it was fascinating to hear what really works for some, and not so much for others. The group of doctors that they knew, the referrals, the therapists, the therapies, the supplements, the culmination of years of experience and a gazillion hours of studying…and they were so willing to share it with me. Thank you, MOCHA moms!  Woo hoo!!!

I learned a new term today. ‘neuro – immunologically impaired’. If I’m getting this correctly, the belief here is that because of a variety of factors (predisposed genetic factors, mercury poisoning, viral infections from MMR, overabundance of yeast in the gut, over-reaction to antibiotics, food allergies/intolerances, lack of certain nutrients, and a compromised immune system) that our children are outwardly displaying autism, but the problem is more internal. Unless the internal self is sorted out first, the external cannot be helped as much. I get that. That jives with me. Now that I’m understanding the concepts, my question is where to start? It is apparent to me in the past 9 months of living as a mom of a diagnosed child with autism, that each child is truly unique. Each child has different symptoms. Therefore, I think it’s best to continue with the testing. Establishing a baseline. The tests that interest me most are the ones that show the possibility of leaky gut, as well as the heavy metal contaminants. And then to find a DAN!  (Defeat Autism Now!) doctor. I think that I may have found one. Alot of them see one in Oregon. I think that we’ll try local first and see how this goes. This is just the beginning of this research. More to come.

On a different note, I loved the episode of Glee this week. The character, Artie, who is a paraplegic in a wheelchair, had a daydream that was amazing. He walked out of his wheelchair, cured in a single day of whatever ailed him, and started dancing to Men Without Hat’s ‘Safety Dance’. Remember that song and dance?! Everyone in the mall either joined him or cheered him on. The dance itself was like ‘Safety Dance’ meets ‘Thriller’. It was fun to watch. But, then he realizes that it was just a dream, and his girlfriend handed him a mall pretzel and wheeled him away. What I loved about this scene and what stuck with me the most was that as she was wheeling him away, he said to her, ‘you know I’m going to dance again’, smiling. She said, ‘I know you are’. I think that Oliver, when he is stuck in a trance like state is envisioning himself breaking free of his stuck state, interacting with the world differently. Whether it be dancing to ‘Safety Dance’ in a big mall with friends, or walking along the beach by himself… My job as his mom is to try and find what isolates him, and the keys that may or may not unlock the autism.

to market, to market May 17, 2010

Posted by caizooka in autism, autism parenting.
Tags: , , ,
2 comments

A huge THANK YOU to the cashiers at Metropolitan Market who graciously helped me out the other day. I rarely take my kids to the market. I can’t focus when I’m trying to manage them, a shopping list, price comparisons, and also the ingredients of food to make sure that they’re absent of any gluten. So, I use my babysitting hours to grocery shop. I needed just a few items and thought, ‘oh, how bad could it be?’  Famous last words, right?  Oliver started spiraling and Emil followed suit. It was like a symphony of tears, screaming, and anger all in one. I got my credit card out, put my basket on the counter and told the cashier that my son is escalating into a tantrum and I need to get him out of the store. I think that she understood from my tone that I wasn’t joking and that this just wasn’t a normal tantrum. She took over, and told me that she’ll ring up my order and have someone bring it out to me. Whew! She totally got it. I really, really appreciated it. I think that the over-stimulus of the supermarket just really caught Oliver off guard and he couldn’t recover. Thankfully, the tantrum didn’t escalate into one that we couldn’t get out of entirely.

‘Mom, you’re glowing!’ May 11, 2010

Posted by caizooka in autism, autism parenting.
Tags: ,
add a comment

Man, what a wonderful day with my sweet Ollie! Two days in a row of blissfulness. I don’t know what has brought this on, but I’m going to rejoice and bask in it’s glory while it’s here! Oliver and I went to the nursery this morning with Grandma to pick flowers for her planters. It was so much fun. He had a smile on his face the entire time and was descriptive of all of the flowers. Then when we got home and were planting together, he told us that the flowers were lovely and that they were a little bit sad because they wanted to be planted. When he gets into these modes of happiness, his verbal abilities grow immensely. I’m beginning to see some pattern of him shutting down, lashing out, angry, incapable of communicating himself to us, spacing out. But then when he comes out of it, he grows and expands. Yesterday he went on and on about his dog, ‘Puff’. Puff is a stuffed dog. Oliver talked very specifically how Puff’s mom was Libby, Grandma’s dog. Oliver has a great imagination. He was telling someone yesterday that he used to have a dog, but he died 3 weeks ago because he ate too much food. Julian and I were listening to him in awe. Where does this kid get this stuff? But, the expression on his face and his body language will tell you that he believes this with all of his heart.

Today he took my hand in his and said, ‘Mom, you’re glowing, just like me!’ Yes, Oliver, I am glowing. When I see my sons happy, I do glow. That is what being a parent is all about. Thank you for making me glow today. I needed that.

Happy Mothers Day to My Mom May 9, 2010

Posted by caizooka in autism, autism parenting.
Tags: , , ,
1 comment so far

A day of gratitude. And, believe me, I’m grateful. In the past year my mom has filled in the cracks, picked up the pieces, and become our biggest fan/supporter. Completely unconditionally.

Anyone who knows my mom wants to adopt her as their ‘2nd Mom’ or their ‘Seattle Mom’  for those who have moms that live out of state. Some would like to adopt her as ‘Their Mom’  to replace the one that they have. Friends of all of my kids call her ‘Grandma’. As if she were their very own. They probably see her more than they see their own grandmothers in some cases.

I love how real and practical she is. For a gift for my third child, instead of buying me any stuff, she gave me ‘a year of laundry’. She literally came over, and did our laundry for us. Then she would sneak baskets of dirty laundry into her car, take it home with her, and bring it back clean and folded and also put it away the next day (all whilst having a full time job mind you!). What a huge gift. (no one tell her that Emil just hit two because she is still doing our family of 5’s laundry…)

When I’m having a good day and appear to be embracing this latest chapter in our lives called ‘autism’, people ask me, “Karen, you are so strong, how do you do it?”  I can answer that quite simply and I tell whomever might ask me such a question, ‘thanks to my mom, I can make it through the day.’ It is so entirely true. My dad’s humility and sense of humor plus my mom’s incredible compassion created a ‘perfect storm’ for a special family. Oliver just punctuates our very entitled ‘special needs’ name. We all have needs. We all have special circumstances. We all do. My mom was a special-ed teacher back in the beginning of her career and taught us that every person is a person, same as the next. No better, no worse. And every person has something special to offer this world. Indeed! She showed us by example how it is on us to see what that person’s gift to this world is. Sometimes a person’s gifts aren’t apparent and are hidden. That makes them special and that can be a challenge, but not something that you cannot overcome. It is such an ability that she has to make people feel good about themselves. I am so appreciative of this. My sisters and I talk constantly about seeking the positive in situations that sometimes seem bleak on the surface. Mom taught us that. In order to appreciate others on this level, I’ve come to understand that it requires a certain amount of general acceptance of people’s differences, and also a special sense of tolerance.

I asked my 13 year old what his favorite top three qualities of Grandma are, off the top of his head:   1)she can find something to like in everyone    2)she can always make someone feel good about themselves    3)she is always there to help. Wow. I’m happy that he is paying attention and recognizes these qualities. They have a special bond.

And, get this…my mom volunteers at the EEU once a week so that we can learn techniques in dealing with our sweet Oliver. If that doesn’t make for a Super-Mom/Super-Grandma, I don’t know what does!

Thank you, Mom. I love you!