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a biomedical approach to autism May 23, 2010

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

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

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

to market, to market May 17, 2010

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

‘Mom, you’re glowing!’ May 11, 2010

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

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

Happy Mothers Day to My Mom May 9, 2010

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

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

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

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

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

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

Thank you, Mom. I love you!

many glimmers of sparkly hope May 4, 2010

Posted by caizooka in autism, autism parenting.
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After yesterday’s bleak post, (sorry…) I will share some positive highlights of today…

-Oliver came home from his beloved Teacher Heather’s last night and took the air popper out, measured and poured popcorn in, placed the bowl, and turned the popcorn maker on entirely on his own. He didn’t eat any, but hey, small victories!

-Emil asks Oliver when he was freaking out, “Ollie, what’s wrong? Why are you sad?”.  Keep in mind he just turned two!

-Julian has decided to engage in school and has produced a lovely video about cyber bullying with his buddies. What a great bunch of boys that he surrounds himself with. Love those kids sooooooo much!

Oliver has had his share of tantrums and very challenging moments today. VERY challenging. He told my mom that if she made him get on the bus that he was going to have a tantrum.  WHAT?! Now he is threatening people. What next! Mom managed to turn his behavior around but it is devastating that this behavior has extended beyond just threatening his mom and dad.  Grief!

Ollie’s going to Kindergarten May 4, 2010

Posted by caizooka in autism parenting.
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So, we weren’t able to get Oliver into the EEU for the fall. Bummer. It is amazing how it all works out though because I think that in the long run, his new plan for the fall will end up being best for him. LOVE it when it works out for the best! Of course, I have many, many concerns, worries, and anxieties, but I have faith that it is going all be okay. I have to believe that. Once we found out that it didn’t look promising for the EEU for the fall, Oliver’s amazing IEP team met informally and came up with a fantastic alternative for him. We are so impressed by the level of caring of these most amazing individuals. They recommended that he be in the dispraxia program at the same school that he is attending now. Peter and I went to see it and really could envision our Oliver being successful in that environment. It is a self-contained program and the student-teacher ratio is 1:3. So, it looks like about 9 kids to 3 adults. Wow. Perfect. Especially having been witness to this escalation in sensory issues as well as behavioral issues, we feel that he’ll be in good hands. The fact that he’ll get to work with the specialists, in the same school, that is our neighborhood school, is such a blessing. Cross your fingers and think super positive thoughts for him!

I got to watch the last 5 minutes of his Pre-K class today and I was really happy watching how well he was participating. So proud of how how hard he tried and how engaged he was. Even though he liked to mess around with his buddy next to him. And, honestly, this cracks me up and makes me smile more than anything. The fact that my autistic son was interacting with a buddy just like an almost 5 year old should be…YES!!!  That is awesome!!!  Go Ollie!

go away, autism May 3, 2010

Posted by caizooka in autism parenting.
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Sometimes autism just plain doesn’t jive with me. Something is up with Oliver. His wires are crossed lately and what usually had been a situation that he could overcome, if not on his own, then together, has become a battle. A battle that I feel like I’m losing badly. Where is my white flag? What happens if I surrender? Will everyone fall apart? Will life go on just like it has been with no change? I am exhausted. We all are. I feel the optimistic me giving into the pessimism that is screaming at me. I love my kids and my family but I would like a time out to collect myself, to try to understand what is happening instead of running around in a complete state of chaos.

The tantrums/meltdowns have taken a huge toll. The hardest part of it all is that I just plain don’t understand WHY. I don’t understand why my sweet Oliver comes downstairs prancing and adorable with hugs and kisses for all, then turns into a terror without any notice. Screaming. Yelling. Throwing. Kicking. Hitting. Hitting himself. Hitting others. Hitting the floor. Hitting the wall. Ugggg…just wish that I had some answers. The tactics that worked last week don’t work this week.

I want to embrace this. I want to. But, I also want to crawl up in a corner and pretend like this isn’t happening. Yes, I accept you most of the time. But sometimes I want to pretend like you aren’t here invading my life!