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.
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.
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!
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!
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!
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.
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 😉
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.
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.
Just short of a miracle, Oliver got a haircut with no big fuss. Thanks to his buddy who is his social skills partner, and to Teacher Heather. His buddy got a haircut last weekend and on Monday they drew up a social skills story. Peter talked with him about what was scary and came to find out that it was the hair falling in his face that was most terrifying. I did some research and found that some people have used visors to prevent the hair from falling in their faces. I told him that there was a special hat for haircuts. He seem unenthused at first, but then he seemed into it. For some reason, the next day I asked him if he wanted to get a haircut at the barbershop or from Mommy. I have been through this conversation with him numerous times before only to be yelled at, ‘NO, I HATE HAIRCUTS!’ But for some reason on this day he said, I’d rather have you do it, Mommy. He asked if we had a special hat. I said, ‘Why, yes, and you get to choose which one you want to use!’ I didn’t think this through. I was still on a high from hearing the words, ‘YES’. I somehow floated to the hat drawer in Julian’s room and there were two visors in there. One was an orange Denver Broncos one. That is the one Ollie chose. He also insisted upon scissors, NO clippers. I cut his very thick, overgrown hair with a pair of $1.99 haircutting scissors with a huge smile on my face. It’s not the prettiest haircut you’ve ever seen, but it is definitely a haircut. Huge, huge progress. I really never thought that it would really happen. Yeah for progress!
Since diving into the gluten free casein free diet for O 6 weeks ago, I don’t know what to think. Behaviorally speaking, I see no change. This is where I had really expected to see significant change. Where I do notice change is in his focus and also language acquisition. Quite significant actually. I am really going to have to consider how much of a difference it has made because the food situation with O has gotten out of hand. I honestly don’t think that it is because the restricted aspect of this diet. We have done a very careful job of allowing him to eat the foods that he wants. Peter’s new trick is to take a gluten free hamburger bun to Dick’s and swap them out in the front seat before O catches wind of it. I took his lead and have been carrying gluten free hot dog buns in my bag when we go to the Museum of Flight or to the Children’s Museum.
We’re figuring out that trying to get O to eat a proper meal is kinda out of the question at this point. So…I’m trying to pack calories and nutrients into him during snacks. And earlier in the day he will eat more. Come dinner, forget it. It’s enough of a struggle just getting him to sit in his chair, furthermore putting food into his mouth, chew, swallow and digest. There are days when I think that the only thing that he will eat is apples and peanut butter. Not any apple and not any peanut butter of course. The apple must be fresh from the fridge, cut into wedges, peeled. The peanut butter must be the extra country JIF that has the blue cap from Costco. Just writing this makes me cringe. I have learned that one should not ever try and substitute a different, perhaps better quality, organic peanut butter, nor should one even consider leaving the peels on the apples. On the upside, the calorie content is good and there is iron and protein in the peanut butter. The apple is 80 calories. The peanut butter is about 190 calories/2T. Over the course of a day he’ll probably eat 3 apples (240 calories) and more than a half a cup of peanut butter (760 calories). That’s 1000 calories. In a web search, I found that a child of his age and activity level should consume approximately 1400 calories. So, that’s not bad. I’ve been telling myself over the past couple weeks that Temple Grandin would ONLY eat pudding and jello for the longest time and she’s now over 60 and a functioning member of society.
I spoke to our doctor about this and she said that we should have seen the benefits by now. This is food for thought as we decide what to do moving forward. If we were seeing huge differences, I would stick to this diet like glue. I just don’t know if it’s worth it. The time, energy, cost, brain space. I’m know that there is going to be a happy medium for us, but I don’t know exactly what that is going to look like.
Continue reading “I’ll just have an apple and peanut butter”
okay, we’ve been doing this whole gluten free casein free diet for 3 weeks now. I am stopping to ask myself at what cost? What am I expecting to accomplish? I thought that I was seeing improvements at first. Was I imagining that? It’s not like autism is quantifiable. Perhaps if he was a number on a scale, say a 34, and by doing this diet for 3 months would bump us up to 38 or a 40, it would be worth it. I’m not seeing that. Initially, I thought that we were seeing improvements in focus and fewer tantrums. Yes, there should be data collection involved in this but believe me, at the end of one of these tantrums the very last thing that I am thinking is, ‘let me record this on a whiteboard’. What I am usually doing at that moment is praying to heaven above that I can gather enough information and perhaps some insight from that moment to make the next time better. Lets see how much time and effort went into this diet today. Spent time finding a gluten free hamburger bun recipe. Bought the ingredients at PCC while Oliver was at school and my mom was watching E. Spent a fortune. Came home and put the 14 obscure ingredients in a bowl, mixed, waited while they were rising. Cleaned the mess up. Baked them. About 2 hours elapsed. Oh, did I mention that I did this one handed as I had surgery on my left wrist? (can you sense my irritation?) All in all, they were okay. It was nice to have a home baked item as a part of dinner. I do know that everyone appreciated them as well. But the bigger question is…is this worth the effort that I’m putting forth? What else could I have accomplished with that time and money? I could have done a fun activity with my mom and the boys. Also, is this worth the sacrifice of the rest of the family? The nearly unpalatable breads, sending Julian and his friends to the garage to eat girl scout cookies so as not to upset O, the tantrums over food. We will persevere until Easter and then revaluate. There is just no well researched data that is making me stick to this for our family beyond what we allotted for. If you have any concrete information to make me stick to this further, PLEASE let me know. I would also love feedback on if I decide to reintroduce gluten or casein back, which it should be?
On a different note, I feel fantastic! Less general inflammation, more energy, less bogged down.
Just when I think that everything’s better, out of nowhere, there are plates hurled again at breakfast. Thank you, Peter, for catching that one before the carefully peeled potatoes made their way across the kitchen.
So, I’m revisiting the morning and wondering what went wrong along the way to spur this behavior. What were the signs? What could I have seen but didn’t?
Oliver came downstairs smiling and prancing, seemingly happy to see Emil and I. He ran to the sofa and did a headstand. This is what he usually does. The pressure on his head seems to be soothing to him. I was making breakfast, Emil was playing with playdoh. Oliver was chirpy and grinning. I gave Emil some potatoes. He was eating them happily, minding his own business. I asked Oliver if he wanted some potatoes, too. He yelled, ‘I hate potatoes’. I ignored him. I then asked him if he might like some ketchup on them. He yelled, ‘I hate ketchup and potatoes’. I didn’t react and decided to switch from the topic of food to drink. Somewhere during this time frame, he asked if he could watch tv. I said, ‘maybe later’. I think that just added fuel to the fire.
Then Julian came downstairs and gave him a hug and said ‘good morning’. He didn’t revolt against that. Peter came downstairs and asked him if he’d like to join us at the table. He sat down but then stated that he wanted the potatoes peeled. He said, ‘sure, no problem’ and peeled his potatoes. Sometimes Oliver needs to get his way a little bit but then he’ll get on board with the plan after you give him a little control. Today that just further enraged him. I made some eggs for the other two boys with butter. Oliver never likes eggs, so I figured that it would be okay to cook them with butter for the other boys (Oliver’s not eating dairy/gluten). Then, he says that he wants eggs. I put a piece on his plate. He then started freaking out that he wanted a bigger piece before he even had any. Then we had a full fledged tantrum starting. Plates being flipped over, etc. Peter took him upstairs.
A couple hours later…he won’t eat more than two bites of food. He wanted a waffle. I made one. With chocolate chips and maple syrup. He ate two bites. Then he saw the left overs from breakfast and wanted the potatoes again, with no skin. Okay. Done. He ate two bites. He said he’s not hungry. My mom said to make him a milkshake. Good idea. Made him one (dairy/gluten free of course) with a banana in it. He drank about 1/2 cup.
Is it the gluten-free thing? Has he lost his appetite for food because of that? Is that causing him the tantrums? Is it that he was sick the past few days and he hasn’t eaten so he’s not hungry yet? Prior to this I was noticing how well he was doing. Fewer tantrums, better focus. More creativity and lots more laughter. He was bee-bopping around here last week in great spirits. He was also easier to talk into things and push the boundaries a bit. Now that he doesn’t seem to be feeling as well, he’s not at all flexible and is not easy to get along with. He simply cannot rebound well.
I wish that I had more answers for my questions. I feel like when we have a string of good days in a row I get closer to figuring this out. Then we’ll face a health set back and it seems like everything that we learned doesn’t work and the rules have been rewritten.