jump to navigation

lite it up blue April 2, 2013

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

Today is autism awareness day. Throughout the day I’ve pondered what this means. I’ve arrived at the answer: so much! Such an amazing place to be in for kids who are being diagnosed now. There are people that are acknowledging autism. That is huge. 10, 20, 30 years ago this would have never have happened. Yet it is happening today. That deserves its own celebration! I’m constantly taken aback by the strength that those who have carried the sign, ‘my child has autism’ around for awhile now. There was a time not too long ago when the word ‘autism’ was simply not uttered. Definitely not understood. I’ve learned so much from the few who have walked on this path before me. 

As much as I am grateful for today, there is something voracious that has been eating away at every corner of my soul. We are all doing so much, but, it just doesn’t seem like enough sometimes. There are days that the depth of the pain that I feel for my son who has autism is just too much to bear. Not just my own son, but the community of amazing children with autism and their families who have become my community. Some of these children have learned how to adapt and communicate within the various communities in which they exist, yet some are so grossly misunderstood and isolated. Behind each one of these children that the label, ‘autism’ is adhered to, stands a parent, or two, a family, and hopefully their own community of supporters. 

Why is today so inspiring yet so unsettling then? Because, it’s not just about awareness, it’s about acceptance. It’s about us reaching out to the person next to us, regardless of what their diagnosis is, be it autism, cancer, or epilepsy…and just loving them. Being able recognize that each one of us has strengths and weaknesses and being able to eventually see beyond that to see and hear about each other. There is just so much to learn from each other. It’s an amazing feeling knowing that because of today and the next 364 days, that one year from now we will have achieved incredible steps towards more acceptance. 

The gratitude that I have for those around me who continually accept, embrace, and love my family is overwhelming. Especially today, April 2nd, 2013, autism awareness day. And also on traumatic brain injury awareness day, March 13th, 2013. 

Advertisements

tears of hope March 25, 2013

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

I rarely cry about my son’s autism these days. I do get frustrated, overwhelmed, exhausted, and sometimes sad. But tonight when I went into check in on my little Ollie sleeping, I felt tears streaming down my face. It caught me off guard.

Every night I look at all of my kids when they are sleeping. They are each so dear and precious in their sleeping states. Watching Ollie sleep always fills my heart with an extraordinary mix of feelings and emotions. When he has a tough day, it’s so nice to see him not battling with the world and to see him at such peace. When he’s had a happy day, I can see the smile lines still on his face. He always has a slight smile on his sleeping face. He is just beautiful.

My husband and I spent the weekend involved in the first Autism Hackathon for Microsoft’s Bing Fund. I was honored to be asked to speak on Friday evening. A few of us spoke to the challenges that autism presents to our everyday lives from the perspective of a parent, the child, and a few knowledgable doctors. The audience was comprised of mostly developers and designers. They confronted a topic that wasn’t familiar to them and were tasked with creating technological solutions for the challenges children with autism of different stages face. They then formed teams and worked hard the next two days on their products. Some of the developers and designers involved have children with autism and others just wanted to rise to the challenge. And that they did. They bravely assumed the daunting task of comprehending the daily obstacles that someone who lives with autism incurs. They each poured their hearts and tremendous talents into 11 very different and compelling product prototypes. On Sunday, we judged these products. It was a true struggle to judge them because every single one of them would affect so many lives in such positive ways.  It was by far the nicest weather in recent memory in Seattle yet these fine individuals confined themselves to the indoors to VOLUNTEER to work feverishly on their products. Even the founder of Surf Incubator, where the Hackathon was hosted, headed up one of the 11 products.

The tears that I shed were those of hope. I was so touched by the selflessness of a community of technologically skilled and devoted souls who gathered together, committed to help a growing community of children diagnosed with autism and their parents.

I know that a lot of parents in similar shoes often struggle to hold onto hope for their children with autism. Some often get lost in the cycle of having and losing hope as they see their child bounce through what seem like endless struggles. I wish that I could have bottled the hope, passion, and intensity of the individuals that gathered this weekend. Wow.

Rahul Sood, who lead this extraordinary effort, did a formidable job of bringing his commitment to this cause forward in a dignified and passionate manner. Although he does not have a child on the autism spectrum, he knows well the challenges that society is faced with. His heart has been touched by a dear friend of his and his family whose daughter has autism.

From the bottom of this mom’s heart, I am grateful for everyone who participated. You have shown the potential of what can be by your dedication.

My heart is filled with hope.

Karen

back to school September 13, 2011

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

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

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

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

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

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

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

our little bumblebee July 21, 2011

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

I had an interesting train of thought the other day when I was trying to explain how O talks. He is like Bumblebee in the Transformer movies. It makes perfect sense. Bumblebee ‘speaks’ through utilizing different song bits to express his voice. So does O. He will use a snippet of Scooby Doo, then the very next sentence he uses the words of Elmo from Sesame Street, then Ming Ming from Wonder Pets, then Ironman. It’s quite a concoction. But, to us, it’s our norm. In the beginning it’s hard to understand, but we’ve learned to decode what he is saying and hardly even notice whose words, or what character’s words he is using. The point is that although he might be using someone else’s words, we who know him well, can hear his voice. Just like Bumblebee. Although he, too, uses different songs’ words and tunes, it is voice that you hear once you know him.

the mystery of autism May 24, 2011

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

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.

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

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

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.
Tags: , ,
1 comment so far

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.
Tags: , , ,
3 comments

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.
Tags: , ,
5 comments

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.

holy art thou spork October 27, 2010

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

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.
Tags: , , , ,
add a comment

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!

love you so much October 16, 2010

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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