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why did it have to be you? June 5, 2011

Posted by caizooka in autism parenting.
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I’m posting this now…it was written 10/15/10

I love how you are who you are. Lost in your own world. Happy as a clam. But I look at you, and even though you are so happy, sometimes you don’t look back at me. But, it is not about me. It is about you. Why did this have to happen to you? I want you to be happy. You are. I want you to have a full life. You will. I don’t even know what I’m writing about, but there is this sense of pain as a parent to want to absorb anything that might obstruct your child from not feeling his full potential of happiness. I don’t think that having autism is going to prevent you from happiness. I just held your sweet face in my hands tonight when we were carving pumpkins together. You smiled at me. For some reason, you caught me off guard. All I could think about was, “WHY YOU? ”

I see my friend’s son who has had cancer, but is doing marvelously now at age 5. I ask myself, ‘why him?’ ‘Why them?’ I just plain don’t understand why cancer had to happen to them. To him. Why autism had to happen to us. To O. Yes, I see the blessings in disguise, but the pain is undeserved. I don’t get envious very often, if ever. I feel so fortunate to have everyone in my life that I do. I’m sooooooooooo blessed. I wouldn’t change anything, or anyone in my life. But, every so often I see a family of super externally happy, super successful kids. Super athletic, super academic, super whatever. Just super.  Would I want in a million years to be them? Never! But, it does make me think of why something things are so hard for some at times. Yet, some people just seem to coast through life with zero hiccups. Yes, autism is difficult to deal with, but nothing like dealing with a 1 1/2 year old that has cancer. What is THAT about?!!! Maybe some day this will all make sense, but right now, at this very moment, I just plain don’t get it. It’s a big, fat, ugly-ass pill to swallow.

I’m completely in awe of how this cycle doesn’t end. Grieve, accept, embrace, grieve more, accept more, embrace more…then start over. Rinse, lather, repeat. Just when I was in a good place with where we were all at, out of the blue, it hits me. I guess that because O is doing so well and has been able to adapt more easily, that his true autism has been more apparent. No longer, for the past few weeks anyways, have our lives revolved around if and when O’s meltdowns will or won’t happen. When it does, what is our exit strategy. I’m always aware of the easiest exit of any given place. Who will get E while one of us is dealing with O? Who will be able to stay with O while someone else takes J to his events. It takes a lot of coordination. A LOT. So many friends are on my speed dial and have so graciously helped out. Sooooo many. I could never begin to repay the debts that I owe. People have been so giving and so gracious in their love and support and help.

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the mystery of autism May 24, 2011

Posted by caizooka in autism parenting.
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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.

that sigh. May 23, 2011

Posted by caizooka in autism parenting.
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I remember that sigh. I heard it the other day when I took a deep breath in, then out. On the tail end of my inhale I felt that shake. That same shaky breath one gets after crying for a few hours or a few days. It’s like Grandpa Fred and I were breathing in sync. My Grandpa Fred had that shake in his breath whenever he took a deep breath. You didn’t just hear it, but you could feel it. It always haunted me and drew me into him at the same time. He endured much tragedy in his life and overcame many an adversity. His wife died when she was only 39. He raised 3 boys on his own. He lost his youngest son when he was only 29. He came over from Japan on his own on a barge when he was only 11 years old to join his parents. Then his mom died of influenza. His dad moved back to Japan. He kinda raised himself. He was interned with his new wife and young son to Gila Bend Internment Camp for the duration of  WWII. You would hear all of that in his mere breath when you listened carefully enough. I have heard it in my own breath intermittantly these past months but have ignored it entirely. Willingly. It’s terrifying.

Ahh…that sigh is the sound of life slipping through your hands and it represents your complete inability to do anything about it. It’s the pain, suffering, and trauma wrapped up in the inability to breathe fully any longer. Afraid of what might happen if you do. Where there was once a smooth, gentle exhale, a choppy, interupted sigh has replaced it. Not only that. The oxygen flowing through your body now comes at you in a different flow. It’s neither here nor there. Sometimes (when you hold your breath) oxygen is restricted. Sometimes (when you hyperventilate) although the repetition of the breaths, there isn’t enough oxygen. Ugg…just need some more oxygen it seems.

I never knew what it was until now. As I muddle through this phase, I hope to hear less of that shake in my breath. I hope that I won’t have FEAR written across my face when my kids do something scary. I hope that I can get out of this, ‘hope for the best, prepare for the worst’ mentality that I’m entrenched in. I hope that I can be more carefree again. I hope that the shake in my breath goes away.

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.

One shining moment April 18, 2011

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There is something magical about the whole March Madness thing. The raw excitement of college basketball and the pursuit to be the best. In every drip of sweat that hits those hardwoods, I can envision the years of hard work, the dreams of each player, their families, their communities, and the amazing determination that it takes to get there. The celebrations of the victories, the lessons learned in the defeats. The hunger that each one of them has in them and what they’ve had to sacrifice along the way to get there. How many players with the same athletic ability who weren’t as hungry, as determined, and willing to sacrifice as much, did they pass to get there? Why is March Madness so bewildering? For me, it’s the small teams from universities that I have never heard of, outplaying big power basketball powerhouses. It’s the traditions, the fortitude, and the respect that each player, coach, and fan has for the sport itself. It’s the building of the excitement. It’s so darned captivating and inspiring!

The players haven’t yet experienced the spoils of what the NBA provides. None of the riches, the power, or the image. College basketball is all about the sport. It’s about competition. Yes, there are some big attitudes that come in swinging, but there is the ever humbling effect of an undeserved injury, an ‘easy win’ that was lost at the buzzer, a dream lost, that keeps March Madness such a wonderment.

Then, as if it wasn’t exciting enough…after the winner is finally decided comes the song. The song of all songs. Flawless in it’s endeavor to capture every human emotion painstakingly drawn out of every viewer as we embraced these 68 teams, whittled down to 32, then 16, then 8, then 4, then 2, then 1. We felt their hopes and dreams, cried for them in their defeats, cried with them in their victories. Then Luther chimes in with…’Feel the beat of your heart, feel the wind in your face, it’s more than a contest, it’s more than a race…one shining moment, you reached deep inside, one shining moment, you knew you were alive…’

Every year, it’s a sobfest as I sit on the edge of the sofa, glued to the tv waiting to see the video and hear the song. Pure magic. All of the years of watching, remembering the moments we’ve borne witness to in years past…the victorious moments … Grant Hill to Christian Laettner at the buzzer to win over Kentucky in 1992…or the unbelievable ones … Chris Webber’s timeout incident in 1993.

PS: I am choosing to live in denial of the fact that there is anything that taints the beauty of March Madness. If there is anything that isn’t pure and sportsmanlike about it, I can’t hear it 😉

PPS: Thank you CBS for bringing back the Luther Vandross version of ‘One Shining Moment’!!

catching on things March 31, 2011

Posted by caizooka in tbi.
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All of J’s friends wear their J wristbands. His friends at his school decided upon the saying. It says ‘We Believe’ and on the flip side it says ‘In Julian’.

Since it is made of rubber, it can catch. I was typing away this morning and then moved my hand. It caught. I took it off, mindlessly, and put it next to the computer and found myself staring at it. My heart skipped a beat, I held my breath. I realized how much I loved the fact that it caught on the desk and how I had to stop what I was doing to consider some of blessings that have been bestowed upon us in these past months.

I wear mine all the time. It is a constant physical reminder of the love of a community for one of their members; of how strongly this love can change a person and everyone in their periphery. In this phase of J’s recovery, this feeling of enduring compassion, inspiration, and friendship for a buddy and his family has been a life changing experience for many of us. So, yes, I love the fact that my wristband catches on my desk when I’m typing. The inherent kindness and generosity of everyone in our community is contagious. You might catch a case of it if you are careful!

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.

autism and insurance, or lack there of in Washington State February 17, 2011

Posted by caizooka in autism parenting.
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As I have been ignoring a great percentage of emails, especially listservs, over the past 3 months, I’ve finally started to realize that a large amount of them are about the Autism Insurance Parity Law that is currently sitting in our state legislature. It’s stuck in committee. It has taken a lot of people a lot of effort to even get ‘Shayan’s Law’ into committee. Now it sits there, awaiting to be scheduled for an executive session vote. If it doesn’t get voted out of committee by Monday, February 21st, it will die there.

So, what does this really mean? Currently families with an autistic child pay a great deal of money towards autism therapies. Insurance DOES NOT COVER THESE THERAPIES. That’s right. We are paying straight cash for these therapies. Our favorite ABA therapist we cannot send Oliver to see. We cannot afford $85/hour for her services for a sustained period of time in addition to all of the other therapies. Not many people can. We did last year and our insurance denied our claim. Microsoft is one of the very few employers that actually covers ABA therapy. At 80%. The disparity in who is able to afford autism therapies and who is not is something to consider. Yes, the world is not fair, but does it have to be this cruel? I know of a lot of kiddos who have been able to gain some great skills from autism therapists. They are fortunate. We feel so fortunate to have fallen into some fantastic therapists whom have given Oliver some amazing social skills. The rest of the kids rely upon what the public schools are able to provide, when they are able to provide it. They are less fortunate.

The State of Washington has Full Mental Health Parity and laws that state coverage for neuro-developmental treatments. It is not law that these benefits are extended to individuals with autism. Here is why:

-The treatment will only be covered if deemed rehabilitative/short term (autism is a chronic healthcare condition).

-Treatments are considered educational for patients with autism and is deferred to public schools.

What Shayan’s Law provides for is that autism treatments be covered to the same degree as the Washington State mental health parity. So, basically, telling the INSURANCE COMPANIES that they have to cover some of these costs. This should be a given. There are some links below that state some basic data to describe just how expensive autism is.

So, what can we do to help? I’m not a super grass roots, call your Senator kinda person. I should be, I know. I did call the people on the Senate Committee that is holding this bill hostage. Will that help? I don’t know. I hope so. I pray so. The advocacy groups are saying to call these folks and leave messages. Yes, I hope that will help. If you know any persons of power in Olympia law/advocacy world, now would be an excellent time to reach out to that contact. As I have learned, you give when you can, you receive when you can. I ask you to ask of those of whom might be able to influence this vote. It is very, very important. It means a lot to a significant amount of people. 1 in 110 in fact.

Much gratitude for your support,

Karen

 

Senator Karen Keiser, Committee Chairman  (360) 786-7664

Conway, Steve, Vice Chair          (360) 786-7656
Pflug, Cheryl                                       (360) 786-7608
Becker, Randi                                    (360) 786-7602
Carrell, Mike                                      (360) 786-7654
Kline, Adam                                       (360) 786-7688
Murray, Ed                                         (360) 786-7628
Parlette, Linda Evans                   (360) 786-7622
Pridemore, Craig                            (360) 786-7696


Here are some wonderful websites stating exactly what is at risk here:

Fact Sheet about Insurance laws – Washington Autism Advocacy

Shayan’s Law information – Washington Autism Advocacy

‘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.

names are a changing October 27, 2010

Posted by caizooka in autism parenting.
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I’ve decided to change the names of the boys in my blog. They are now known as J, O, and E. I know it will take an adjustment for you, and me, too, but I want them to remain anonymous. Please respect that if you know what their real names are.

Appreciatively,

Karen

holy art thou spork October 27, 2010

Posted by caizooka in autism parenting.
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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!’

a night of too many stars October 23, 2010

Posted by caizooka in autism parenting.
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Yeah!!!!!! to Jon Stewart who hosted ‘A Night of Too Many Stars’ to benefit autism education. I sooooooooooooooo love that people are gathering together to support autism education. In any way, shape, or form. Not just the diagnosis portion, which is very important and costly. But, the people who are walking in my shoes. The people who walk much more wicked paths than me, of whom I admire with great enthusiasm. The people who are living with autism. On a daily basis those who are asking, ‘what is this?’ ‘what does this mean?’ ‘how can I do better?’ ‘What of me can I sacrifice to make my child’s life better?’ (seriously…what limb do you want?….glad to provide it for you in exchange for a reverse diagnosis…)

Chris Rock LOVE YOU! I so love the laughter, the ability to have fun, love to laugh! Love to smile with my friends and share laughter. If you know me, you’ll know how important a sense of humor is to me. I love to laugh with people. Laugh at myself. Just plain love it. Just plain love to communicate with people on that level. I love how Jon Stewart can bring laughter to the table and utilize it to raise funds for autism education! Thank you!

And, wow, the videos of our autistic community that they showed. I get them. I know. One mom said, “when you bring a child into this world, you do whatever it takes to give them the best chance at a good life”. That pretty much sums up the life mission for any parent of any child with special needs. I feel so fortunate on so many levels. Some of the more severely impacted kids on the video….that is the path that I imaged us to be on. That we could still be on. Maybe tomorrow. Maybe in the future. We’re not sure. We are happy with the progress that our sweet Oliver has made, but just as it turned on a dime with us once before, it could turn on us again. We don’t know. You don’t know. None of us knows. We have faith. No matter what, it will work out as it’s supposed to.

Having community members, such as Jon Stewart, reaching out really helps! I’m so thrilled with this and have a huge amount of gratitude for these folks. They could easily be raising awareness for any other charity, any other organization, any other cause. I’m delighted that autism education is their cause. There so many who can benefit.

As Jon Stewart said in the opening statement, “tonight isn’t about curing or fight autism, tonight is about helping people that live with it now”.

Amen! Even if it isn’t you who is receiving funds from this directly…feel supported. Feel the passion of a community gathering around you to support you. Embrace that. That is beautiful and you deserve it!

And, you most certainly need a sense of humor to parent a child with autism!