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cylindrical shadows March 16, 2012

Posted by caizooka in autism, autism parenting.
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I wrote this poem after being fundamentally moved by a ballet performed by Pacific Northwest Ballet. As the second of three ballets presented as New Works as a part of the 2011-2012 Season, I found it entirely captivating.

A link to New Works: New Works by PNB

Here is an excerpt on you tube: Cylindrical Shadows

Cylindrical Shadows

random. yet expected.

perplexing. yet complacent.

chaotic. yet calm.

wanted it to end. wanted it never to end.

mesmerizing. yet subdued.

superbly intriguing. yet incredibly dull.

comfortably calm. yet enthusiastically enchanting

starkly black or abundantly white. no space for grey.

perfectly autism.

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yet another acronym May 7, 2011

Posted by caizooka in autism, autism parenting, gfcf, tbi.
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Well, it seems like I can add another acronym to my balancing act…PTSD. We’ve barreled through ADD, ASD, IEPs, OCD, TBI, CT Scans, MRIs, EKG, CBC, CUTE (Crazy-Unpredictable-Toddler-Exhaustion…just made that one up!), ABA, SPD, DRI, PICU, GFCF…

…but coming home from the hospital with J from his last brain surgery, was such a relief that I let down my emotional guard down long enough to take a deep breath of fresh air but it was met with extreme resistance. Shaking, crying, sweating, screaming, and more shaking. These fits passed through me for no apparent reason. Sure, there are some obvious triggers, but it came on like waves. Violent waves met with a strong, sand bagged levy. The first two weeks were miserable. One constant panic attack. Then I thought it was over. I was proven wrong as now it comes and goes intermittently.

I am going with this. If I fight it, I feel like it’s going to be worse. So, I’ve eliminated any outside contaminants…no alcohol, no fingernail biting. I need clarity. Pure, raw thoughts and reactions and feelings.

Resisting my strong desire to numb these emotions and uncontrollable feelings with a delicious glass of chardonnay, I’m left to face the demons on my own. The emotions that I wasn’t able to deal with when I was in survival mode during those first few months. Unable to let down my guard enough to sleep. Holding it together. Barely holding it together yet at the same time wound tight enough to repel any other emotions that might seep into the stature that I was trying to keep. That was necessary to keep.

Now that I’m at the 6 month mark, I’m able to process this. I’m able to finish this post that I started 3 months ago. Fits of panic that rush through me at any given time without warning have diminished some. They still do come in waves. There is no warning. The middle of Costco, playing at the park with the little guys, or making dinner. I am completely powerless to them. I’m thankful that I’ve been able to barrel through this. They will decrease in time. I’m sure of that.

Prior to this change in our world 6 months ago, anxiety was not something that I had experienced. I had some serious anxiety about time. Interestingly, now that has completely disappeared. Time is a whole different concept. Yes, I’d love to get places on time, but the obsession with being on time has been replaced with an anxiety of just being there.

pushing people, people pushing March 5, 2011

Posted by caizooka in autism, autism parenting, tbi.
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I have realized that I spend most of my time trying to convince people to do something that they firmly don’t want to do. Autistic people want to adhere to what is familiar and have extreme tendency to be intolerant of anything outside of their usual focus. We spend a great deal of energy trying to push O outside of his comfort zone. If it were up to O he would eat the same cereal every single day. We would get some seriously epic meltdowns when that one cereal ran out. So, we make him try different cereals. We get a lot of resistance. A lot. Yet, we push and push. Get a lot of screaming and yelling and resistance. Sometimes I wonder why because it would be easier for everyone if we just made extra sure to have that one cereal on hand. Yes, easier now, but in the long run, no. What if General Mills stopped making Gluten-Free Honey Nut Rice Chex? So, to add some variety, Peter bought Gluten-Free Cinnamon Rice Chex this last time. When I saw him take the box out of the grocery bag, my body tensed. I felt the anxiety of having to absorb the meltdown that would surely ensue the next morning at breakfast time. Surprisingly, it didn’t. There was a moment of hesitance, as if  O was saying to himself, ‘Hmmm…this is different…how am I going to react?’, but then he tried it and liked it. THIS is why we push. 6 months ago that morning would have looked vastly different. He wouldn’t have been able to switch gears. It would have escalated into a physical, mental, and emotional break down for O. For us, it would take the wind out of our sail for the rest of the day.

Dealing with a TBI of a 14 year old boy is no different. Constantly trying to sugar coat everything to get J to do things that he doesn’t want to do. More pushing. More resistance. I understand that laying on the sofa, watching NCIS all day is easier. Easier for him. Easier for me. Yes, there was a time for that, where I let him do that. I just was so happy that he is here with us, that I didn’t want him to do anything that he didn’t want to do. I certainly didn’t want to inflict any pain upon him. Now that time is over and it’s a new phase. The pushing phase is underway. It is not fun, but hopefully as he realizes that he CAN do things, we will get less resistance and have to push less.

Of course, then there is always our almost-3-year-old E, who just watches these situations unfold before him. Observing and absorbing…and calculating. He is as sweet as sweet can be, but he is extremely smart and keenly aware of when his parents are worn down from all of the pushing. He knows our weaknesses and vulnerabilities. He plays them. And he does it well. It’s quite a skill. He can be quite a tyrant at times. Again, because it is easier now, we have let it happen. But, I’m onto him. He pushes back in a way that is different from the others because it is pre-meditated! Yes, he has the potential to be a pre-meditated manipulator. But, he has empathy. A huge heart that is oozing empathy. It is our job as his parents to hone this and realize that he has potential to be very smart and can anticipate situations. Yes, turning the negative into a positive. A necessary skill of a parent.

When I originally wrote this post, I was worn down. I didn’t have hope. Today, as I rewrite it, I recognize what I wrote before and hope that when I’m faced with these emotions next time, that I will find it in me to push myself in a more positive direction. Yes, more pushing. Perhaps even shoving. But, it will be better in the end as I will have achieved something different than I usually would. There is that word again, ‘usual’. To me, ‘usual’ means boring, familiar, assumed. It is a beautiful thing to not be usual, but to know when it is necessary. Sometimes familiar is good, but boring and assumed is not. Therein lies the continued desire to push. To forge ahead. To challenge myself to be a better person. A better parent. To raise people who have a desire to challenge themselves to be better people.

As a reminder, I will include what I wrote. (Warning: it is negative)

It’s an unbearable cycle for a parent to participate in. I want out of this cycle. I cannot partake any longer. To spend all of my energy trying to better the lives of the people but to receive nothing but resistance, screaming, yelling, hitting, kicking, complaining, scoffing, stomping, and utter rudeness…it’s too much for a soul to bear. I throw up my white flag.

‘Mama said there’ll be days like this…’ January 29, 2011

Posted by caizooka in autism, autism parenting.
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Yep, ‘there’ll be days like this Mama said’…but, she never told me that I’d have 3 such lively boys. Of whom I could have never possibly have imagined such love for. Or never imagined the devastation of the diagnoses of autism of one. Or, have to endure a tragic episode of almost losing another in a traumatic brain injury. Yet, she never told me that with such sorrow, came such incredible joy. I can only barely write about this now, 2+ months later. And, only because we have a positive outcome. Yes, Julian will be okay. He will be different. We all will. How could we not.

Redefining normal seems to be a constant theme in our lives. I could go into great detail how specifically our lives have changed with circumstance. Ebbs and flows. Hills and valleys. Highs and lows. Loves and losses. Disappointments and victories. It’s all life. It’s brutal, but it is beautiful. It is pure.

Yes, my own mother never told me that life as a parent could be this hard. How I would be holding onto my sacred rosary for dear life on the floor of Harborview Medical Center trying to make deals with God. Praying for Him to take me instead of my son. No mother could prepare their child for this. This was a journey that I had to go through on my own. What my mother did tell me is that there is always something good in every situation, in every person, to find. This, I know to be true. Again, I can only believe this because my 3 sons are here with us today. Under our roof. Breathing the same air. Laughing at the same jokes. Eating the same meals. Yes, I can believe that although life will take different turns, and you have to redefine what life may look like, that there is a silver lining and that always seeing the cup as not just half full, but 3/4 full is a blessing. I know that there are many parents whose lives took a different turn, in that very same ER. I wouldn’t know what to say to them. I just know that God had a different path for my son. For me. I’m so grateful. I know that I was given these particular challenges because I can handle it. On days like today, I truly wonder what God sees in me that possibly makes me worthy of such a worldly responsibility. At times I feel empowered by the gift of the responsibility. Today, I would say, that I feel daunted and overtaken by it. Tomorrow, I know that I will feel strength from the lessons that I learned today. Today, though, I feel sorrow. That sorrow will turn into something positive. I’m not sure what yet. But, I know that the song says, ‘Mama said, Hey! Don’t you worry now.’ I will find peace in those words.

words have power. lets hope that mine do November 9, 2010

Posted by caizooka in autism, autism parenting.
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Well, despite my biggest fear of talking in front of a group of more than 3 people, I managed to pull some words out of my hat in front of a room full of doctors, hospital administrators and other hospital staff. Jeez. I started to have a panic attack just prior to talking, but instead of going down that route, I remembered how important this is. How the responses from so many of you as responses to my post yesterday, via email, phone, or in recent conversations have meant. Words came out of my mouth. I hope that they made sense. When I started to speak, people seemed to listen. I hope that they heard what I said. There were a couple of other parents there and the people who were a part of the group that were parents also had a great deal of important information to consider. I learned a lot from them. I hope that they learned from me, too. I really appreciated the environment. The openness. The feeling of sharing and of mutual acceptance and appreciation of each others ideas. I know that I’m naive but I am liking that about me lately. Yes, I do get down because things don’t work out sometimes, but I like how I have come to see things simply and clearly. Believe me…dark days are very dark, but there is light here and I’m totally going with it.

I think that the biggest complement was that one of the folks from the group followed me out and told me how thankful she was that I was talking about this. She was in tears and told me that her family is going through this right now. An autism diagnosis for their child. My heart went out to her. I know that pain. It stings. It comes and goes. Last week, it stung like a thousand wasps coming at me repeatedly, mercilessly…but somehow in that I was able to reflect and gather strength for today. Funny how life turns on a dime like that.

One (most delightful) person of whom I admire greatly, asked me earlier today about how I felt about the lack of anonymity and how I felt about the panel process in general. That gave me great pause. I was so glad to get that before I went into the meeting this morning because I was able to think about the perspective of what others might be looking for. A different lens. I was able to gather my thoughts and realize that I don’t have any reservations and feel confident that my words will be heard. Even if the entire panel doesn’t take my opinion to heart, that I know that one person will hear something that I will say, and one small thing will change that will help a family who is accepting autism into their lives and their level of health care and quality of life. That is my hope!

Later this week I’ll get to hear the panel’s thoughts and responses to how they might incorporate our concerns expressed today into their plans for their new clinic. I’m so anxious to hear what they have to say. Lets keep our fingers crossed.

a parent panel meeting…need your advice November 8, 2010

Posted by caizooka in autism, autism parenting.
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Good news. My letter to Said Doctors Clinic that I recently blogged on was received. I first received a phone call from someone who was very grateful that I sent it. I was apprehensive. She said that they were basically assembling a group of doctors to review O’s chart to conduct an ‘internal investigation’ of sorts to see if somewhere a long the way they missed something, and how they could better their practice and learn from their mistakes. I thought…’well, atleast they responded and it sure feels good to hear those words. I sensed sincerity in her voice, and I desperately wanted to believe that it was true. She said that she would contact me when the investigation was complete and let me know how it went. I figured that it might be months, maybe a year, maybe more. Maybe never. 3 weeks later, she phoned back and she almost had a sense of enthusiasm in her voice. That was puzzling. I listened. She said that O’s chart was reviewed and that they whole heartedly agreed with me that they ‘could have done a much better job’. Wow…BLOW ME OVER! I had to sit down. In the middle of the floor. She continued to invite me to take part in a parent panel, in an advisory capacity about how to make the patients/parent’s experience better in such a situation. Wow again!

I’d love some feedback from others to take to my first meeting on Tuesday. Anyone who has Special Needs kids, has received diagnoses that were difficult to hear, has children with autism, or are just plain in tune with this process…

I would like to hear what others think on these questions that I’ve thought up in my mind. Feel free to email me privately or respond to this post. I’d really appreciate your feedback and will of course keep the information confidential.

Thank you so much for any information that you might be able to provide me with!

-Karen

——————–

1. How would you have liked to have been included in the diagnosis process of your child? What worked? What didn’t?

2. How could the doctor/clinic/hospital have bettered this experience for you? Your family? For your child?

3. If you have a child with autism/special needs, what are 3 things that you wish you could tell your doctor that would help you NOW in your child’s and your family’s healthcare situation?

4. If you have a child with autism/special needs, what are 3 things that you wish you could tell your doctor that would have helped you EARLY IN YOUR CHILD’S DIAGNOSIS to make your child’s and your family’s healthcare situation?

5. In terms of your doctor’s actual office space, what would make your visit with your child with autism/special needs easier? How could they make the actual visit better? Include as much detail as you would like to express. Parking? Location of building? Check-in process? Expectations of staff to help accommodate you? Waiting room? Clinic rooms? Special accommodations?

6. What is some vocabulary that is complementary to where you are in your parenting of a child with autism/special needs? Vocabulary that is not helpful to where you are in your parenting of a child with autism/special needs?

7. What was/is your expectation of your doctor in the process of your autism diagnosis for your family? What was/is your expectation of your doctor (not autism related doctor, but gen practice doctor) in the process of caring for your child with autism? For the rest of your family/children?

Mean People Suck October 27, 2010

Posted by caizooka in autism, autism parenting.
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About 10 years ago I was on I-99, traveling downtown from North Seattle to Queen Anne. There was a very old, dilapidated red Yugo driving in front of me. There was a balding, 350+ pound man driving the car. There was no passenger with him in the car. The car was leaning significantly to the left as the car was off balance. There was nothing spectacular about this scene. A normal day. A normal dude. Just driving his car downtown Seattle. But…as the traffic slowed us down, I saw that on his bumper, his bumper sticker read, ‘Mean People Suck’.  It was slightly askew. Don’t know exactly why, but I couldn’t stop laughing. Not laughing at him, but laughing with him. At the world.  It wasn’t particularly obtrusive a saying. It wasn’t offensive. It was just plain true. And, if you know me well, you know how much I hate the word ‘suck’. Puh-lease, you can always come up with a better, more descriptive word than ‘suck’. But, in this situation, there is no more perfect way of saying it. Mean People Suck. Oh So True.

How do you describe ‘mean’? For me, it means ‘not nice’. It also means someone who intentionally leaves someone out. Excludes someone. I always try and be tolerant of people who leave someone out. ALWAYS give them the benefit of the doubt. Maybe they just don’t know. They have never experienced what I am experiencing. They haven’t walked a mile in my shoes, nor have I theirs. I shouldn’t judge them, as I don’t want them to judge me. But, I am deciding to draw the line in the sand and say, ‘at some point…people are just plain mean…they suck’. Maybe they should be accountable for their choices.

I’m just not quite understanding how a Kindergartener who is in Special Ed can get left out of so much. The Kindergarten pumpkin patch field trip day…the Kindergarten buddy system…the pre-Kindergarten get togethers.  And that’s all I know about. I’m not even at the school but to pick my son up each day.  I’m astonished by this. At first I thought it an oversight. I made excuses for them. Then, as I’m seeing more and more of this I’m beginning to wonder…what is going on? First and foremost, I see that my son is a Kindergartener at Said Elementary School. Secondary to that, I see that he is a student in Room #5. Just as I see that he is first and foremost a sweet 5 year old boy. He just happens to have autism. It doesn’t define him first.

This is tough for me. I’m not a hugely self-righteous individual. But, I know what is right. I know what is wrong. I know what is nice. I know what is mean.

And, of all days, I encounter another ‘mean’ act. WHO has a boy/girl birthday party for 13 year old and only invites some of the kids from the class of a school that an entire grade is only 35 kids? WHO? At some point I think that there is a choice that people make…nice or mean? That’s kinda what it boils down to. It’s not very grey at that point…it’s kinda black or white. Yes or No. No room for maybe in that equation.

I understand the group dynamic thing. I get that in order to make yourself feel like you’re ‘included’ that you must make other feel ‘excluded’. I get that there is no ‘us’, unless there is a ‘them’…for some people.  If only people were secure enough in their own selves to just be them. True to themselves. When will that happen? Seriously, I feel like I relive high school on a daily basis. Same choices and same insecurities driving people. That’s totally fine if people want to treat me that way. I’ve dealt with my insecurities and am extremely open about that part of me. I am an adult. I am waiting for someone else to come to the table and have a real conversation. You can say all you want to me. I would love to engage in that conversation. Playing out this situation through our kids is unacceptable. I don’t get it. It is mean. This kind of mean is intentional. I don’t get that. Ever. I guess that it just boils down to, ‘Mean People Suck’.

I would have to say as a counter to that, ‘Nice People Rule!’.  Just  think about it…when someone smiles at you, you can’t help by smile back at them…when someone extends their hand to you, you receive it…gratefully. People, lets think about that! Kindness goes a long, long ways.

love you so much October 16, 2010

Posted by caizooka in autism, autism parenting.
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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.

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

Posted by caizooka in autism, autism parenting.
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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

what to google? September 28, 2010

Posted by caizooka in autism, autism parenting.
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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.

apple, oh how I love thee September 16, 2010

Posted by caizooka in autism, autism parenting.
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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.
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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

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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!

Please not the feet! August 25, 2010

Posted by caizooka in autism, autism parenting.
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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.