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back to school September 13, 2011

Posted by caizooka in autism parenting.
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Got O settled into Kindergarten. He is in the same K-1 split class. 9 boys all with a variety of developmental delays; all perfectly lovely. Same 3 wonderful teachers. Different classroom. Uh-oh…something different. That threw our friend, O for a loop. He has been doing a wonderful job of self-soothing talk lately. When we walked in the classroom he said, ‘Well, this is different. (l o n g  pause) BUT, I think that it could be okay’. Major relief washed over me. Okay, crisis averted there. Pretty much, he’s been doing great lately. I left the room with him delightfully happy and participating in a drawing activity.

I returned to the classroom at 3 to pick him up. He couldn’t answer a question. He was so spaced out. The look in his eyes told me that he had had too much and just needed to leave. We left. A meltdown was eminent. Just a matter of time. I told him that we could get an ice cream cone to celebrate his first day. He only wanted to go to the candy shop and get candy there. Once I gave in and said, ‘ok’, he kinda switched gears and was on board. He still couldn’t make eye contact and was spacing out, but I thought, ‘maybe he’ll come around’. Spoke too soon…major meltdown…couldn’t get him out of the car at home. Ugg.

There were only 3 days the first week. They all kinda went the same. It’s hard to see him struggling when he was doing so well.

Today I picked him up. I met one of the specialists in the hall who was telling me how well O was doing this week and just this morning what a great job he did participating in the classroom activity. But, then his main teacher came down the hall and said that O was in the classroom and wasn’t very happy. As soon as I saw him my heart melted. He was so spaced out, laying on the floor, kicking the cabinet. His eyes were overflowing with tears as he stared straight ahead. Without even blinking, the tears were flowing. His eyes look more bluish than green when he is crying. I looked away because my eyes began swelling with tears as well. I managed to pull him out of it a bit by having him show me around the classroom. We sharpened pencils together in the new pencil sharpener.

He came home and just wanted to go downstairs and play legos. He’s really been enjoying that lately.

Tomorrow’s a new day. Lets hope that it goes more smoothly.

the mystery of autism May 24, 2011

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Well, there is sure a lot of mystery involved in the world of autism. A lot of it revolves around the mystery of what causes this. Why is one child so much more profoundly affected than another? Why do some kids get better? Why do some kids get worse? Why are some kids verbal, why are some non-verbal?

The mystery of autism that we are currently embroiled in is, WHY on some days does O just bounce out of bed as happy as a clam, ready to face the day, doing his best to be flexible in situations that he doesn’t want to? Then…the very next day we’ll settle in for a week of complete inflexibility. Very rigid behavior that reminds you of how darned daunting this autism thing is. Every tactic that was working for you is completely back firing in your face. Every boundary set is obliterated. So much screaming. He seems like he is stuck. He is. He seems stuck in his head. Like the thoughts that he is trying to process aren’t making it to the surface. He seems like he is in pain. He looks confused and bewildered. He doesn’t look happy. He is reactive. He is volatile. He can be violent. He spaces out a lot. Is he just kinda checking out to process? Again…it’s a mystery. Because just as soon as you start to accept this as your new reality, he turns on a dime and says, ‘oh, sure, I’d love to have dinner’ and seems to snap out of it, when two minutes before he was throwing it across the room at you while kicking you in the stomach.

Someone unravel this mystery. I’m ready to find out what the real deal is here.

Today was beautiful. O was in great spirits. He was amazing and was full of words and thoughts and comprehensive stories. It’s weird. Almost like he had to go through that phase; had to work through something to get back to us. He’s a different kid today than he was yesterday.

holy art thou spork October 27, 2010

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My dear O has objected to having a regular spoon in his lunch. He has decided that he needs to have a ‘spork’. I kid you not! I forgot to pack a spoon one day (okay, more than that, but who is counting), so they gave him a spork at school to eat his apple sauce with.


I’ve looked for sporks at the local grocery stores to no avail. Hmmm…I did find some online. Lets hope that he gets over this phase soon. The Spork Phase. I love that a friend of mine told me that she’d go to Taco Time and grab me a stash.  Apparently they have a bunch there!

As O says so intently, ‘it’s like a spoon, and kinda like a fork. It’s a spork!’

love you so much October 16, 2010

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I don’t know what the change that is going on with O, is but he is downright pleasant. I’m falling in love, even more, with him. He is really growing up. He is settling down. As I posted before, he is doing a fabulous job of talking himself out of situations. I’m so proud of him. I’m just downright shocked at how well he is adapting himself to his environment. He is also doing a good job of just being O. That makes me fiercely proud. I love so much how he is uninhibited and is happy in his own groove. Just watching him doing what he does makes me happy these days. The fact that he busts out into a tap dance (a la Mumble in ‘Happy Feet’) at any given time is awesome! The smile on his face that accompanies his flashy feet moves is something truly unique.

Something happened today. It was random and wouldn’t have been worth mentioning, but it stuck in my head, like superglue. The guy in the line in front of me at the super market was taking for-evvvv-ver. I was in a huge hurry (as usual), and was not willing to be patient because, after all, it IS all about me! I realized then that this man was different. My head immediately changed it’s tune. This man had different issues. He was ‘slow’. He was struggling with the payment part of his transaction. He was purchasing a 24 pack of frozen Kroger brand hamburgers, and white wonder bread. He was talking louder than anyone else, which attracted just enough attention for people to stop in their tracks and look. I just stood there, watching. Watching him. Watching the cashier’s reaction to him. Watching the bagger’s reaction to him. Watching the people around him’s reaction. Watching the people who had lined up behind me’s reactions. When he talked, he kinda spit. He was just talking, having a conversation with the cashier about the weather. The same conversation that any other customer and cashier were having. The cashier was fine and he did a great job of helping the man through the line. The bagger, a teenage girl, was annoyed. Totally perturbed. The woman behind me was huffing and puffing like her world was about to explode. The man behind her said, ‘what IS the hold up?!’

I just observed. I couldn’t speak. I was paralyzed. When it was my turn to check out, I struggled to remember my phone number that gave me my QFC shopper advantage discount. I had to try three times. My mind had checked out. I was mentally following this man through his day. How hard were things for him? Did he have meaningful social connections? Did he have a community? Who was in his community? Does he need a warm winter coat? What can I do for him???? It struck me later, that the reason why I was so caught by this man is that I don’t know what O is going to be like when he is that age. Will he be fine? Will he be struggling to utilize his debit card at the neighborhood QFC? Will he have friends? Will he have a community? Who will be in his community? Will he have warm winter coat? Will I be here to protect him?! Who will protect him?

ugggggg……….why did my mind have to wander down this path? I wasn’t ready for this! I’m barely adapting to him being out in the world…well, Kindergarten anyways…and now I’m freaking out about him being 50, on welfare, unable to use the stupid debit card machine at the local super market!!!!!

Okay, now that I’ve expressed my biggest fear to the universe, I can move on. I know that this is going to come up again. But, in the world of worlds, I know, I have extreme faith that he is going to be looked after.

but…when will all of the laughing with him become laughing at him? What will I do then? Will he care? Will he notice? I don’t want him to notice. I want him to be free to be him. Be you, O, just be you and be proud! I pray that the world is gentle and kind to you.

oh happy day! October 16, 2010

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The honeymoon of Kindergarten continues! O has taken on the role of ‘Kindergarten Teacher’. His teacher is the most loving, kind, sweet spoken, optimistic person. Thank goodness! I love how O has been able to emulate/channel her when he would normally start down a nasty path of  destruction. Taking everyone, and everything in his path with him. The other day, he started down that path of melting down. He wanted to put up the Halloween decorations. It was breakfast time and we were trying to get him to eat. Peter and I were saying, calmly, and hopeful that he might turn the corner of the meltdown, that he needs to have breakfast first. ‘Hey, buddy, how about some GF chocolate cereal”, “How about some GF fruity cereal”, “How about some hash browns”, “How about some hash browns with ketchup?” Didn’t look like we were getting anywhere. The ‘helpless body flail’ started. He was losing control. But, then, out of nowhere, he adopted his ‘Kindergarten Teacher tone’, and said, ‘Okay…number one, eat breakfast, number two, get dressed, number three, do Halloween decorations, deal?’. Wow. Ours jaws hit the floor. ‘Great, O, that sounds like a deal!’ was all that we could say. Darn…I would have agreed to anything at that point!

There has been a lot of that lately. O being able to get himself out of potential meltdowns, in a very thoughtful manner. I’m truly impressed. Something is working right.

Kindergarten is going so well for him. He has 6 children in his class and two full time teachers, and another full time aide. If not more. These people are all so passionate, caring, understanding, and delightful. He loves them. They love him. What more could you ask for?!

Last week, E actually turned a corner as well. After a few weeks of massive difficulties with him, on Monday, he suddenly let us see that glorious, sweet side of him. Hadn’t seen a glimpse of that part of him in awhile, so I was really relieved and happily rejoicing that it was still there! He was adorable this week. Super kind, affectionate, loving. My sister came into town and he said, ‘Emily, I missed you!’.  Pretty impressive for a 2 1/2 year old.

J has been doing well in school and I have been enjoying him a great deal, too.  Let me remember this week in the future when things may prove to be more difficult. I need to remember the joy that I am feeling when I am writing these words.

Creating and recreating my own ‘peeps’ October 12, 2010

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After getting the initial casting aside from our general ed/normal/mainstream Kindergarten/elementary school this fall, I’ve decided that instead of sitting around and looking at ‘what isn’t’, that I would focus on the ‘what is’.  Wearing these shoes of a mom of an autistic child, I’ve had opportunity to meet the absolutely most AMAZING people. Seriously amazing and inspiring! I cannot imagine if my life hadn’t taken this turn. After a decent amount of time just wallowing and being sad, I’m done. Ready to be active!  I got together with the most amazing bunch of moms the other night. Each one of them I completely connect with. We get each other. We speak the same language. The language of ‘what?!” and also the language of ‘YES!’ So funny how even though our kids might have similar diagnoses, they are as different as we are parents. Yet interestingly, we’re kinda all quite similar, too. At this point in my life I rejoice and say, ‘yes, please!’ What an extremely emotionally intelligent bunch of moms/friends. Conversation was easy and I didn’t have to explain so much. They just got it! And they got me. Pretty much effortless. We practically finish each others sentences.

It is amazing to me how suddenly this crazy thing called autism has entered our lives and brought us all to a single commonality. Lets learn. Lets be resourceful. Lets share. I love how it’s not a competition. We’re all looking out after each other. We’ve got each other’s back. There are no false pretenses, we are all just who we are. I think that it just reminds me how entirely consuming this world has become.

excuse me. i have a grievance. September 30, 2010

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In the back of mind this past year, I’ve been drafting this letter. I’m sending it off today. I have removed all doctor’s information and names.

——————-

Dear (said doctor’s clinic):

I am writing to you because I don’t want to see another family have to endure the pain, uncertainty, and unnecessary distress that my family has. I would like to take this opportunity to express my dissatisfaction with our care at Your Clinic. I would most like to see fundamental care changes made to be able to identify Autism Spectrum Disorders and other developmental delays identified in a more timely, compassionate, and diligent manner.

My oldest son who is 13, as well as my youngest son, who is 2, both are neuro-typically developing children and we encountered no problems with Your Clinic. I was satisfied with the care and numerous times came to the defense of our doctor, Dr. ABCD . In my mom group and in the community, there were several nay-sayers of whom I quickly dismissed and told them of our extreme dedication to Dr. ABCD and the other doctors at Your Clinic. Especially Dr. EFGH and Dr. IJKL.

Where I take up issue is in regards to my son, O, who is 5. He has had numerous health issues. He had respiratory issues from the time of just a few weeks old, asthma, repeated colds and ear infections, and many clear signs of developmental delays. We were constantly seeking answers for the variety of health problems that we were encountering. There was never a clear asthma plan laid out for us. We met once with a different doctor at Your Clinic who asked where his asthma plan was.  I had never heard of an asthma plan and this was months after being treated for and medicated for the condition.  After this and also after being put on a barrage of medications for asthma, we finally were able to obtain the referral to Local Asthma Clinic where our needs were better met for his asthma.

Early on in O’s care at your clinic, we expressed our concerns of his atypical behaviors. These are the ones that I think could have been better evaluated and picked up by our doctor earlier on his care:

-little or no eye contact

-extreme fear of water

-screamed in small places (claustrophobic-like)

-irrational behavior around noise
-panic in group settings

-strange speaking behaviors
-spacing out, glazed look in his eyes
-seemed not to hear sometimes

-showed little or no interest in other children

-covering his ears a lot

After a suspected bout of encephalitis at age 2, these behaviors were even more apparent, as well as these:

-loss of language

-irrational reaction to pain

-OCD (very obviously lining things up)

-a lot more spacing out

-inability to answer a direct question

-violent, intense tantrums

-pattern walking

-abnormal pickiness in eating

-complained that his ears hurt when they don’t

There are a few other times that I think that O’s health care could have been better handled.

-The entire encephalitis incident. Dr. ABCD didn’t have enough information to go from and called in Dr. EFGH to concur that it was probably not Kawasaki Disease, because of the absence of mouth lesions, but rather, it was most likely encephalitis. They sent us to Local Hospital to undergo further testing. Up until this point, I think that things were handled okay. However, never were either of these two scenarios explained to me and I left the clinic with my screaming child, and myself in tears and headed to Local Hospital’s ER where they were awaiting our arrival. I was trying to search desperately from the parking lot on my iPhone what Kawasaki Disease meant. What was encephalitis? How did he get either of those? What did that mean? Why was my son so sick? Why was he screaming non-stop and could not calm down. Was my son going to die? After enduring a battery of tests at the ER, they found nothing but ruled out several sicknesses including diabetes. O only calmed down once we found his favorite movie to put in the VCR in our room. Dr. ABCD decided that based upon the findings (nothing) that it was most likely encephalitis and we should treat him at home with acetaminophen and ibuprofen. We were given no follow up care or instructions of what to look for in terms of him becoming more ill. It is after this incident that O lost a significant amount of speech and began spacing out a lot. He went from speaking in paragraphs to screaming one word demands.

-The incident that finally caused us to leave Your Clinic occurred in 5/09. O woke up screaming and would not stop. Finally, at 9, I called Your Clinic and explained my concern that my son was screaming and was in apparent pain and that I needed advice as to what to do. At that point he had been screaming and crying for 2 hours, unable to calm down on his own or by diverting his attention to something else. I consider myself to be a very resourceful mom. I tried everything. Change of venue, distraction, ride in the stroller. The nurse said that she would consult with the doctor and call me back. She called back at 11 asking a few questions but offering no advice. By that time the behavior was escalating further and was unable to calm down; it had been 4 hours. I told her that I thought that he needed to be seen and I didn’t know what to do. She said that she would have Dr. ABCD call me right back. I was very clear in describing to her the urgency of the situation. My husband had to come home from work because I still couldn’t get O to settle down and the screaming and tantrum was spiraling. I was so worried that there was something medically wrong that was causing this behavior. Did he have a headache? There was definitely some sort of inexplicable pain. At 1:30, I decided to take him on a drive in the car. He managed to get out of his 5 point harness car seat and was trying to jump out of the car. At that point, I took him to the ER because he was then a danger to himself. They didn’t find anything medically wrong with him but we spent several hours there trying to get him calmed down enough to run tests. When we finally got home at 7pm from the ER, there was a message from Dr. ABCD’s nurse at 2:30 stating that if the behavior was bad that we should probably go to the ER. Too little, too late. No follow up calls or care was provided by Your Clinic. After this incident, I requested a neurological-psych exam referral to Local Hospital. There was something not right about O and I was determined to find out what it was. I was not going to feel bad for hurting my doctor’s feelings by requesting this. He referred us. When we met with the neurologist at Local Hospital, she told us that our doctor had specifically written, ‘parent requested referral’. That spoke volumes to the fact that our doctor didn’t hear what our concerns were and support us in finding out what was going on. Considering that he had had suspected encephalitis, which was followed by severe loss of language and constant spacing out, I would assume that a doctor looking out for the best needs of their patient would want to rule out any neurological impairments. Seizure disorder? Autism? Other Processing disorders? Brain tumors?

Reflecting upon Oliver’s care at Your Clinic, I recall vividly telling our doctors every appointment that there was something ‘different’ about O. I always remarked that he screamed when in a crowded room and wondered if perhaps he had some sort of processing disorder. We were always searching for answers for what we were dealing with and always left Your Clinic still wondering. Looking back, this is not how it should have been. I should have been more persistent but felt so lost.

It has taken me a great deal of time to think and process this situation before I could sit down and write this letter. I have thought long and hard about what I wanted as an outcome of this letter. For one, I believe that your doctors need to have more time with each patient.  5-7 minutes with each patient might be enough time to diagnose an ear infection or simple cold. It is not nearly enough time to be able to decipher if there are developmental delays. If they suspect there might be, then perhaps there could be a point doctor in your practice who might help guide the other doctors in fielding questions and furthering referrals to obtain earlier diagnoses. Your doctors need to be better informed on what to look for in order to detect developmental delays. With Autism Spectrum Disorders on the rise, you are doing a disservice to your community by not better educating your staff on what to look for, when, and how. There should be better protocols for when a parent or doctor is suspicious of a behavior or there is a sign that perhaps is not developmentally normal. I recall asking Dr. ABCD repeatedly if he thought that O might have any processing issues. He told me that he did the appropriate AAP screening and that he was fine. He never had the time to listen to our concerns about O’s development beyond his immediate physical concerns.

Feeling like your doctor or medical practice is not listening to your words is a very frustrating place to be in as a parent. When I put my children’s healthcare in your hands, I expect that I am listened to and respected. I expect that as a parent that I should give our doctor as much information as possible that might be pertinent to the situation. When a child is suffering from neuro-developmental delays and possibly autism, please understand that it is a spectrum disorder. Some children present in very different ways than others. Be observant. Be patient. Listen.

I feel strongly that O’s diagnosis probably couldn’t have been obtained much earlier than it was, but he most definitely could have benefitted from early interventions and guidance. I cringe when I think about the time we lost and will never get back when we could have been getting him help. It was a very painful time for us as a family not knowing what was going on. We really could have been helped with the guidance of a strong medical practice and empathetic leadership to guide us into this diagnosis of ASD rather than grasping at straws and begging for referrals.

It is my sincere hope that our story moves your clinic to take into consideration changing your protocols involving understanding, identifying, and diagnosing Autism Spectrum Disorders. Ultimately, it would be ideal if you could set up a protocol in which if a child’s primary doctor identified something in a better screening technique than you are currently employing, that they could refer them to a lead/point doctor within your practice to spend more time with the child to further investigate if there might be any developmental delays. Obtaining a diagnosis for any development delays is a significant wait. The doctors of your clinic should be able to at least treat the symptoms that the child is contending with. Are there sensory processing disorders that could be helped with PT/OT? Are there other issues at hand that could be better dealt with ABA/DIR therapies to help the child? What can you as a medical practice do to better accommodate this child and their family? Do not waste time. Early diagnosis is important, but early therapy, guidance, and compassion from your doctor is crucial. There is so much that you can do as a medical practice to lead families gently into this diagnosis. You have such power to make this a less difficult path than the one that we took. I hope that you take the opportunity to consider how to better accommodate your patients and their families.

I am happy to meet with you to at any time to further discuss this matter and to help to create a better understanding of Autism Spectrum Disorders.

Thank you for listening,

me

two days till blast off September 6, 2010

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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!

game on August 12, 2010

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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!

0h, Wednesday, how I love thee August 11, 2010

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Time to exhale. Peter takes all of the kids to their schools on Wednesday morning. I walk back into the house after frantically waving ‘good-bye’ to everyone and it is quiet. Soooooooooooo quiet. It takes me a few minutes for that to sink in. I walk into the house, sit down, stare at a blank wall for a few minutes, then, ready, set, go! Oh, how I love to multi-task! I put the smut tv on hulu (housewives of new jersey, or of anywhere, bachelorette, bachelor…) and I watch basically anything that requires zero focus or concentration from my brain because I’m busy doing other stuff..cleaning, making websites, laundry, updating my blog, writing stuff, researching, trying to schedule stuff. I love it!!! Basically, I have an ‘external hard drive’ aka, my binder, in which I write everything down from Thursday until the next Wednesday. Then Wednesday I tackle the to do list. I am a total list whore. I make lists all the time. I’m beginning to realize that I’m the only list person in my home and everyone else gives me the big eye roll everytime I bring up a ‘list’. Especially the teenager, as I’m sure that you can imagine that scenerio. I will not give in. I am a slave to the list!

Costco, Target, Safeway…these are the three big hits on Wednesdays.

At 5pm on Wednesdays, I’m missing my boys! I go to their Children’s Center and pick them up. They are happy to see me, and I am happy to see them. Love it!!!

laughing so hard my side hurts August 7, 2010

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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

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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.

Oliver the Shaman? June 17, 2010

Posted by caizooka in autism, autism parenting.
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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.
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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.
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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.