Category: autism parenting
why walk when you can run, or skip, or gallop
Watching my kids the other day I realized a funny thing…Oliver skips. Emil gallops, and Julian drags his feet (he can’t help it, he’s a teenager), but when he was their age he would always run. I think that it’s a funny way to look at them each individually. I didn’t teach any one of them to do what they do, they just do it. One of the biggest surprises in being a parent is realizing that your kids are just who they are. They might look like their parents, have mannerisms like their parents but they are inherently just themselves. Not only is it surprising, but it is also sometimes the hardest concept to realize and come to terms with. I learn a huge amount from other parents. I’m blessed to have a brilliant, well-versed parent population to claim as friends and mentors. The more seasoned parents have a MUCH better perspective on this than I do.
I think a lot about being hungry. What that means to grow up being hungry. To be so hungry for something that you’ll do anything to attain it. You’d try so hard that you can’t even see straight. We didn’t grow up hungry for food, but we grew up learning that hard work had it’s place to get where you wanted to go. I don’t see alot of kids who are growing up hungry. Of course not. We worked hard to go to college, and to provide for our children. That was our goal growing up, to live the American dream. Now that we are blessed and living that, I sometimes feel like I’m doing more damage than good; providing too much. Do you withhold things from your kids to instill hunger so that they have desire? I struggle tremendously with this. Being raising half Japanese, in a time when there weren’t so many of us, gave me adversity. Going to a school where the general population was extremely wealthy when we were not, gave me adversity. Education, traveling, and living in foreign countries and learning foreign languages provided me with perspective to learn how important adversity is. I want my kids to be happy and healthy. I don’t want them to starve, but I do want them to have passion. Deep passion for something. Passion so deep that they will do anything in their power to attain it.
So, if our kids are each themselves, where do we, as parents fit in as they mature? I guess that as they grow up that they’ll still need direction and guidance, as I still seek that in my own parents. I want to give my teenager space to be himself and learn from his mistakes, but don’t want him to get hurt.
What is the right mix?! I guess that I’ll have a lot of opportunity for trial and error. Especially more so now that summer is nearly here! One thing for certain, having our sweet Oliver in our family gives us all perspective and makes it real. Some days more real than other days 😉
a trip to the pet store
We’re having a string of good days here! Friday, Mom and I took Emil and Ollie to the pet store for an outing. It was pouring rain out and we needed a low key adventure that did not involve a lot of people and too much noise (the less external sensory input the better!). It was great fun! Emil ran around like the crazy dude that he is. He most liked the mini-hamster. Gross. We spent a great deal of time watching the dogs being groomed, the lady cleaning out the cat cages, and the guy removing the dead fish from the fish tanks. Oliver’s birthday is coming up this month and he’s being really funny about it. He keeps on telling different people what he’s getting for his birthday. Yesterday he told Teacher Heather that he’s getting a HUGE trampoline for his birthday. Hmmm…news to me! When we were at the pet store, he started to get fixated on buying a fish tank with real, live fish in it. So, I said, maybe for your birthday. That wasn’t met with a warm reception. I thought that a meltdown was coming on. The body language said, ‘meltdown is coming’. I don’t know why, but I was able to coax him out of it by asking him to help me choose a dog treat for Libby. For some miraculous reason, he complied. It’s so strange how on some days he’s so easy to redirect, and on others you can’t redirect him at all.
The funniest story…when we were watching the cat cages get cleaned out, a true cat lady came up and started talking to Oliver. Oliver was in a super chatty mood and was enthralled with the cats. The lady asked Oliver if he had any cats. He went into a litany about our cats. This is most funny because we have no cats! He and the cooky cat lady were one with each other as they discussed their cats. But then Oliver said that his mommy’s cats died 4 weeks ago. Cooky cat lady was devastated!
a biomedical approach to autism
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
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!’
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
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
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!
$22 to avoid a huge tantrum. Today, I’ll take it.
Well, we are now the proud owners of a $22 pink watering can. That is what it took for Oliver and I to be able to leave the nursery yesterday intact. Tuesdays mornings are our sacred Oliver-Mommy time. We always do something fun before he boards the bus at 12:30. Yesterday we went to the nursery because he wanted to buy some strawberries. We’ve been gardening gung-ho lately. Okay, not we, but me. And I wanted to rope him in so that we can spend more time outside. So, after I made him go with me all over the nursery, we settled on a few strawberry plants. We were having such a good time talking, laughing, and just plain joking around about nothing. On the way to the check out counter, the large rack of shiny, colored watering cans caught his eye. He just bolted for them. Not just the rack, but the pink one to be specific. He asked very nicely, ‘Mama, can we buy this pink watering can. Pleaaaaassssseeeee?’ I don’t want my kids to think that they can get anything and everything that they ask for. That is a bad precedent to set. I decided to steer him away to the other (less expensive) watering cans. He started to flip out. It’s really like something in his head just turned on and then Wham! Tantrum. I tried and tried to get him out of it. Judging parenting eyes were lurking. I totally held it together but then I just decided that it wasn’t worth it. I knew that if I gave in that both he and I would remember this as good memory. The take away from the morning wouldn’t be an image of myself leaving an abandoned shopping cart full of carefully selected strawberry plants in order to pick up my screaming, flailing child. I decided that the $22 to fork over for shiny pink metal watering can was worth it. And, it worked. We had a really good hour and a half after that until he got on the bus. If I didn’t give into him, that would have been an hour and a half of further escalating screaming. I would have spent the 3 hours when he was at school racking my brain how the situation could have been different and also how much I suck as a parent. We’ll consider the pink watering can an investment. Boy, does he love it!
NOT THE SHARPIE!
Should have known better. Oliver was starting to get a little restless and locked himself in the office. My mom and I were trying to get Emil to calm down because Oliver slammed it smack on his face and he was angry and trying to hit his way thru the glass doors. Then Oliver found a piece of paper and what appeared to be a Mr. Sketch pen. He started to draw and looked like he was doing a pretty good job of self-soothing. About 10 minutes later I went back and saw that there was blue marker everywhere. I thought to myself, ‘Well, atleast it’s not a Sharpie!’. Then I looked down on the desk and recognized the undeniable Sharpie pen cap in the exact same color blue. Panic! It is everywhere. On the hardwood floors, desktop, chair, Oliver’s arms and shirt. I didn’t freak out but just said, ‘Oh, NO, what happened here?’ Oliver said, ‘Oh, I’m so sorry, Mama, it was an accident’. I said, ‘sure is’. I don’t think that he did it intentionally, but it certainly wasn’t an accident. Regardless. Now I have to try and get this out. Any ideas? If there is one thing that I’ve learned with him over the past few months is that when I have a big reaction to something, he does, too. Both in happy and sad times. So, I gathered the pen and walked away. He was feeling really remorseful and starting down a negative path until my mom took he and her dog, Libby, to the park. From there, he’s been in good spirits.
‘gluten-four’ makes my tummy hurt
Oh, Oliver and his sayings. I love him. Today he had a very heartfelt conversation with my sister, Malia, on the phone about going to Trader Joe’s. He said that he bought ‘gluten-free’ because gluten-free made his tummy feel better and had the purple signs (the signs that they use at Trader Joe’s to signify that an item is gluten-free is a purple sign). Then he said that orange juice also protects his tummy and makes him feel better. He then told her that ‘gluten-four’ made his tummy feel bad. I gather that he has interpreted ‘gluten-free’ to be ‘gluten-three’. What a nut. I haven’t had too many conversations with him about this so a lot of this has really been about him picking up on the conversations that I have about gluten-free diets with my mom, sisters, and friends. He is incredibly literal. He makes me chuckle 😉
shoestring potatoes are gluten-free!
Yes! Hallelujah! Shoestring potatoes are gluten-free! What a joy. Trying to remain optimistic, because I am a true optimist, but honestly, life can be sad and depressing whilst also being happy and lovely. Finding a balance in this world raising these 3 boys is a challenge right now. I do know that in sad there is happy, and in happy there is sad. Ugg…I need a balance. I feel that it fluctuates between super happy and super sad in a moments notice, if even that. I don’t want to complain. I hate complainers. I want to tell them to buck up and live life. I want to tell myself that. I tell myself that. I hear myself saying that. I am doing that. And with that I feel hope and love and pure joy. The utter pain of autism in our lives and the utter joy of it is a lot to bear sometimes. I don’t want to say ‘I’m overwhelmed’, but I am. If it were just autism, maybe I would be fine. If it were just a teenager, maybe I would be fine. If it were just a feisty toddler, maybe I would be fine. But the combination of trying to anticipate the needs of all three of these beings in addition to a marriage and a home is a lot. Thank God for Glee. The happiness in my week has been the return of this show. How crazy is that! It is something that I can count on. The rest is not as reliable.
acceptance and making peace with Autism
I’ve done a great deal of reflecting lately. Having my hand bandaged and being in an extended lethargic state of recovery, I’ve had the time to do so. There is so much to reflect upon. It seems that these times when you are forced to slow down are a blessing in disguise. I feel frustrated because there is so much to get done and I can’t so I just throw my hand(s) in the air. I’ve reflecting upon so much. I have done a lot of contemplating where I am in the raising of each child and how vastly different each of them are. Different kids, different needs. Now that my wrist has been set free of my cast from the surgery, I can type again. YAY!
I think about where I was a year ago. We had no diagnosis; just hunches and lots and lots of fear. Oliver had just been evaluated by the school district. I was a mess. Sadness wrapped in a thick layer of depression from feeling out of control and frightened. Oliver was tested at between 1 – 2% in social skills. That was devastating. I remember sitting in the parking lot of Burger Master on Aurora. Sobbing hysterically. Not knowing what to do. Oliver sat in the backseat drinking a milkshake, spacing out, staring out the window. That was such a low point. It was so scary. I have never been in denial of where we are at with Oliver. I think that if Oliver were my only son or my oldest child, it would be a different situation. Also the fact that my mom was so good at grasping the bull by the horns always set a great precedence for us. Even though it had been a few years between kids, so there was no one to directly compare him to, I knew that Oliver was different. He wasn’t connecting the dots and jumping to the next milestone on his own. I figured that maybe different kids just progressed differently. I still cannot watch videos of him when he was younger because I don’t know what I don’t want to see. If there is obviously something there and I didn’t see it I will feel bad. If there doesn’t appear to be anything, I will feel bad that maybe we did something to cause this. I’ll get to the point where I’m ready to watch these, but I am just not ready yet.
Sometimes I want to wake up and find that this whole autism thing has washed away. Even though sometimes it’s not the most difficult thing that our family is dealing with, it is undeniably the thing that pushes us over the edge because of the amount of all encompassing worry involved. I’m learning to live with it and recognize the beauty of everything that we are granted. Even though it seems like too much at times, I have made peace with where I am. I recognize how volatile this world is and how something that I have never even heard of can invade my life tomorrow. So, I need to be okay with today. Not only do I need to be okay with it, but I have to embrace it. I think that part of embracing something is accepting its flaws and weaknesses along with it’s beauty and strength. I accept that there are going to be worse days than I’ve seen, but I also believe whole-heartedly that the best, most glorious days are yet to come.
Another large part of acceptance is giving up control. I see parents who feel as powerless in the face of autism as I do. We are courageous. I also see parents who are absolutely courageous upfront, seemingly fearless. I bow down to you and praise you for paving part of this path before us. It is downright scary at times the effects of autism has upon on a family. I don’t feel as much fear when I admit that I don’t have control of this. I can try and control Oliver’s diet, vitamins and supplements, therapies, etc, but I have to make a separation about what I am trying to control. I cannot control autism and I cannot control Oliver. My friend, A, today told me that she was reading a book about ADHD and the whole first chapter spoke of how first and foremost you must love your child for who they are. Indeed, that is it! That is the first step in acceptance for me. Sure, I would love for autism to leave us, to free Oliver of its very intense grasp, but if not I will love him just the same. Setting aside the expectations that you have for that sweet little baby that you held so tightly when they were born and promised them that nothing would ever, ever go wrong…that takes a great deal of faith to know that it is just going to be okay.
I also reflect upon the people who have entered my life in the past year and I simply can’t believe my blessings. I have learned a great deal from the courage of people who are facing autism and life’s many other challenges. The tears we’ve shed, the laughter…my life is so full because of all of these amazing souls that have passed through my life and left a huge impression upon me. I cannot imagine my existence without them and the lessons I have learned from them. I feel a tremendous sense of community and support. I’m so grateful.
Although sometimes I don’t want to be more aware of Autism, I remain in awe of Awe-tism. How awesomely consuming it is. How much time, energy, money, and strength that it demands of me. It doesn’t ask me patiently and wait for me to say, ‘just a sec’. It shrieks at the top of it’s lungs for me to hear it and drowns absolutely everything and everyone else out. I’m still listening but sometimes I just really want to turn the volume down.
mound of shells 