Tag: autism parenting
Love you, Temple Grandin
Although I haven’t read her books or saw the HBO special based upon her life, I just watched the C-Span InDepth interview with Temple Grandin. It’s long but as a mom of an autistic child, it was extremely insightful and worth it. She was diagnosed with autism when she was four. She is nearly 60 now and a Ph.D university professor. I LOVE how she said that autistic people can continually keep learning and developing, and improving! I needed to hear this hope from her. I need to feel reassurance that I didn’t miss the proverbial window of opportunity with an earlier diagnosis for Oliver. I have been beating myself up about this lately.
She is so literal. So is Ollie. Yesterday he walked in when I was watching the final episode of The Bachelor. They had flown the girls in on helicopters in grand fashion for the finale. One of the girls was crying because Jake was dumping her. Oliver said, ‘Why is that girl so sad? Oh, it’s because her helicopter just left’. I LOVE that kid! Sometimes when life gets so complex and convoluted, it is refreshing to be confronted with such unpretentious, blatant honesty. To laugh when you’re happy and cry when you’re sad. Or, in Oliver’s case scream with joy when he’s happy, and flip over coffee tables when he’s mad.
I was relieved to hear Temple Grandin state that she understands what is inappropriate and what is appropriate because she learned this. And, she is able to effectively articulate this. In the past year Oliver has learned so much and made such strides. Yes, it is true that picking up on social cues is not innate to him as it is to you and I, but he CAN learn this. We can teach him this. So, it is possible that he may someday understand that it is not socially acceptable to show people his Thomas the Train underwear when first meeting them.
Here are some other important take aways from her interview:
-mentors and setting goals were vital to her.
-autism is a very broad spectrum. She mentions that there are not enough expectations for the children on the higher end of the spectrum. In the 50s, they were forced to have manners and to learn different social cues.
-all kids need to have a way to communicate. There is much more going on in these kids brains that you think.
-autistic kids need to have contact with normal students.
-she spoke of her middle school/high school years as, ‘socializing with teenagers is not a life skill that I need’. From here she elaborated that it’s a shame that schools have removed hands on job skills/vocational skills for different kinds of kids. These skills are necessary in order to find the right job for autistic/non-mainstream people to give them life skills.
-she spoke intensely that normal people cannot imagine the alternate sensory reality that autistic people live. Apparently florescent lights are a huge problem. The flickering can drive people crazy. (I didn’t know this!) There are ways to accommodate for other sensory processing disorders.
-she touched upon the whole BAD plastics theory that I subscribe to fully. (they’re leaching bad, bad things into our bodies). She also believes that biomedical approaches need to be utilized in conjunction with medicinal approaches AND that the genetics component to autism is huge.
-she mentioned that she was ‘allowed to act autistic for an hour a day’. She had high expectations set for her that she was upheld to but then was allowed to be free, too.
-she doesn’t believe that there is necessarily an increase in aspergers/autistic kids, but rather, this less structured society makes it more apparent and it is hurtful to them.
-autism is a gift.
This woman is a true pioneer. Her insight and her incredible spirit are a true gift to those of us who are just starting in this journey. We are all benefitting from her inspiration.
one week down
Well, after this evening, the gfcf diet doesn’t seem like such a big deal. We have the most delightful babysitter. She texted me that E had thrown up. After my autism support group meeting I headed home to help deal with the barf situation. E was fine and running around being absolutely darling. O was a disaster. Darnit. I guess that he was wondrous all evening until E threw up. I am beginning to see a trend when the shift in attention diverts from O, he (sometimes) loses it. Gosh, who knows! O basically lost it tonite because of no real apparent reasoning. Well, real and apparent in my world has a wholly different meaning in his. Screaming, crying. Then, intentional throwing of apple juice. Twice. Apparently we didn’t have the right color straws to suit his mood. What the heck. I so should have predicted this! He NEEDED purple AND black. I should have known! I clearly wasn’t thinking thru this well enough. After this, he zoned out for a long time. Then he came around sheepishly and was sorry. He said that he is so sorry for throwing the apple juice on the floor two times. He then suggested that we should get some more straws the next time we go to the store. Wow. That’s progress. If we could just work on the meltdowns now.
The diet has been going well for us. To be selfish, I have to say that I feel great! No gluten, dairy for over a week. Don’t crave it either. It’s getting a little easier. The bread substitutes leave a lot to be desired. I found tapioca flour hot dog buns. Made them for J and he (Mr. Silver Palette himself) didn’t even know the difference. O liked them, too. There are some brands that are good, and some that are disgusting. After making homemade gfcf pizza last night, I’d like to venture into the bread baking. It was actually pretty good. I’m going to borrow a bread machine and see how it goes.
One issue that has gotten worse has been the biting, oral sensory issue. We’re on the waiting list at Rosemary White for Sensory Integration Therapy. O constantly has something in his mouth. Must be chewing at all times. Last night he was chewing so hard he actually bit his inner lip and he didn’t notice it. He has started to bite his fingernails and will chew on the skin on his hands until they are raw if he doesn’t have anything to chew on. He chews on his shirt, sleeves of his coat, his blanket, his stuffed dog, ‘Puff’. He did this when he was younger, but hasn’t been doing this for awhile. These sensory issues seem to come in waves. It is worrisome. Something must be off kilter with him sensory-wise. I could tell that he wanted to hug me this morning when he woke up, but instead he punched me. Then he shoved E over. It didn’t even phase him that he did something wrong. Just kept on walking down the stairs. He scares me when he gets like this. It seems that there is not much that we can do at that moment to help him or help the situation other than removing ourselves from the situation. E was crying saying that O hit him. I gave him attention and he felt better. I was really happy that he didn’t smack him back.
I’ve been thinking about how E’s life is going to be different because of O. I know that in the long run, he will be significantly enriched by having O as his older brother, but I am anticipating some hurdles. I see him overcompensate for O already and he’s not even two. One of my weaknesses is my anxiety involving time. Must be on time. I freak out if I’m late. O is always forcing me to be late and it makes me crazy/crazier. He either can’t focus at all or is entirely over-focused. There is very little middle ground. Trying to get socks, shoes, and a coat on him and get him into the car is a major feat. E goes and gets his own socks and shoes and coat, then he gets O his shoes and coat, too. I can see how he wants to help O and it is really sweet. They’ll be two years apart in school and I wonder how that will play out for each of them. I don’t worry as much about J because he’s so much older than O and E and he’s establishing himself well in his own groove. We’ll deal the issues as they present themselves or blow up in our faces. Either way 😉
I’d like to present my mom with the award for ‘The First One to Find Gluten-free Casein-Free Donuts’ Award. Woo Hoo! As a prize you get to have a GFCF donut with us tomorrow! Can’t wait.
give my son a donut
My God. Are there no GFCF donuts in all of Seattle? On Amazon.com Grocery? No………….. Boy, this mommy searched and searched yesterday but found nothing. My son wanted a donut. My dear, sweet, spacing out, completely adorable autistic son, Oliver who is 4 1/2, wanted a donut. I could not produce it for him. We went to several gluten free bakeries, PCC, Whole Foods, searched the internet, called local donut bakeries. I found some truly gross looking recipes. When Oliver gets a bee in his bonnet, watch out world, there is no letting up. He talked about it again and again and again. Woke up this morning asking for donuts. I made GFCF pancakes in the shape of donuts. I stacked them with pure maple syrup and dairy free chocolate chips. He did seem delighted with them. No doubt though, when I pick him up today from school he’ll be asking for the donuts again.
I am not a baker, but it looks like I may have to become one. If it means that it’ll bring a smile to my sweet Oliver’s face, then I might have to dive in.
flying (GFCF) fruit loops
The title says it all. My kids, when not gastronomically appeased, like to throw their food, forks, spoons, and plates at me. Why? This is a good question. O does it because he is O. E does it because O does it and it gets a rise out of me. Thank GOD that J and Peter don’t do it. That would be a problem! Seriously, after putting some energy and thought into this whole GFCF diet, preparing meals has been a challenge. A rewarding one when they are being consumed, gratefully or not. But, when they are being hurled at me, I take offense.
I have pride in the fact that Julian is such a good eater. He eats a variety of well cultured, very diversified cuisines. He’s picky, but not in a bad way. He has good tastes in food and when he asks me to make him something above and beyond to appease his palette, I will gladly comply. Kinda makes me happy that he’s been paying attention all of these years to the extra effort to provide him a variety of foods and flavors. When I make a pretty well thought out, balanced meal for O that is wholly GFCF AND delicious looking and tasting, and he chucks it at me across the kitchen without even trying it first, followed by his fork, I’m not only sad, but, I’m worried. He demands a hot dog. Seriously?! I’ve made this lovely meal for you and you throw it at me, tell me that you hate me, hurl your fork at me and then demand the most disgusting food on the planet?!! This mom couldn’t say yes to that. Should I have? I have an issue about being a short order cook to my offspring. That is the lowest of the low in my world. Do I do it still? Yes, I do. Am I proud? No, it’s sad. Until our lovely O came into our family, I knew not of how some people are just born like this. I swear that I thought that given a lump of clay, I could form that very lump into whom I wanted. Woah, was I ever wrong. Never been more wrong. I’ve found and am finding each and every day that that was the stupidest assumption that I have ever made. But, tonight, I didn’t give into the hotdog craving of my dearest O. I’ve gotta be consistent. No short order cook here. Sorry, dudes.
O is who he is. J is who he is. E is who he is. I accept that I have some control in guiding them, hopefully showing them some manners. Hopefully they won’t throw plates of food at people that they love the rest of their lives. It’s my hope and prayer that they don’t.
day one of GFCF
Well, only two hours left of the first day of GFCF (gluten-free/casein(milk)-free) for us. I’d say that we did pretty well for our first day. We’ll definitely find our way in this. It’ll take some getting used to and we’ll endure some snags. This morning, I feel like I was ready for a gfcf breakfast smorgasbord. For those who aren’t related to me, you won’t know my obsession with smorgasbords. It’s not an obsession, rather a repulsion. All of that food laying out there. Half of it will go to waste because the Health Dept won’t let it sit out again so it’ll be thrown away. Wasteful. Mottainai. One of my favorite Japanese words that translates to English accd’g to Wikipedia as this: ‘a sense of regret concerning waste when the intrinsic value of an object or resource is not properly utilized’. Love that word. No better way to describe serious utter wastefulness.
So…I set out to meet every dietary need of every family member this morning, the GFCF way. I had GFCF pancakes, waffles, pancake and waffle mixes, bread with soy butter (you can start gagging now), a handful of cereals and granolas, soy yogurts (more gagging), juices, rice milk, almond milk. J has a cold and food is the last thing on his mind so he forgoes the yummy display of food. O ate the pancakes (Trader Joe’s GFCF version), with pure, organic maple syrup. E had the same. What I didn’t anticipate, but apparently should have, is the fact that the chocolate chips that Oliver sometimes gets on his pancakes (thanks, Grandma!!!) have milk in them hence the whole ‘milk chocolate chips’. So, after a bit of whining, I caved and decided that it wasn’t going to be the biggest thing if on the first day that’s the only flub up that we have.
Packed up the little guys lunches and made an executive decision to allow the other family members to eat whatever the want outside the house, but GFCF during the waking hours of O. Seems fair. So, I reached into the back of the deli box in the fridge and grabbed a string cheese for E’s lunch. Don’t tell O!
I communicated with one of his pre-k’s that this is our current route. They were more than receptive to this and very welcome to helping us with the change. I fully expect to provide all of his snacks, but they provided me with the Dept of Health licensing standard that requires that two food groups need be presented in a proper snack. Hence, a grain and a dairy. A protein and a fruit..etc, etc. And they also gave me their month long snack schedule so I can plan around that. Very helpful! I have to fill out some paper work so that they have it on hand for their licensing. I will also need to add this to his IEP for the Seattle School District. All very doable. Very, very fortunate to have such compassionate people on board with us. Apparently, there was only one slip up at lunch where O was offered rice milk and didn’t like it. (I’m sure that was the polite way of describing what he really said which usually involve the words ‘hate’, ‘gross’, ‘disgusting’) I guess that he poured himself a half a glass of real milk. No big deal. Again, it was our first day.
In the past two days, I have combed Trader Joe’s, Costco, Safeway, and Whole Foods for their gluten free/casein free foods. I think that we could feed a small GFCF army.
I would like to ask the kind soul who invented rice cakes, ‘WHAT THE HELL WERE YOU THINKING?!!!’ That stuff is so disgusting. Makes me feel like I’m on weight watchers. God forbid. I’m NOT eating that and neither are my kids! I’d rather eat air.
O had a great attitude today. He did fantastic at school. Did super well at home. One of the teachers in one of the other classrooms offered him a graham cracker. I think that she must of felt like I was attacking her as I was yelling, ‘NO, NO WHEAT!!!’. I’m crazy. I guess that I’m committed to being crazy for at least the next 6 1/2 weeks.
Yep. Started off Lent praying for all of this to happen for us this morning at mass. I know that this is a good thing. As long as we don’t have to eat rice cakes!
pure goodness
A few days of quiet and a little peace around here. Maybe the boys colluded and said, ‘hey, it’s Valentine’s Day and all, so lets give mom a break’. Whatever the reasoning, I’m on board. A few outbreaks of hitting, biting each other, but nothing that doesn’t occur in every home with 3 boys.
I love O’s sense of wonder and his extreme imagination. Yes, he can get stuck there sometimes, but I’m noticing that if I let him be stuck there and explore and come back on his own that he is better able to renter our world than if he is forced. He needs to explore that part of himself. He acts out life a lot through his little stuffed dog who he named, ‘Puff’. Puff gets scolded (by O), sent to time out, cuddled, potty trained, and most recently, he hatches eggs! A multi talented dog. Also, Puff used to be a boy, but now is a girl. Hmmm…how did that happen? I’m sure that in O World there is a very simple explanation for this. I kinda don’t want to know 😉
One of my least favorite parts of being a parent is that time of year called ‘SCIENCE FAIR PROJECT HELL’. Why, why, why do I have to do this every year? And, quite honestly, if I know that I’m going to be doing this all by myself, why don’t I get to choose?! I might chose something interesting like ‘how microwaves are poison’ or ‘the evil of plastic’. But nooooooooooo….this year we are dying white flowers green. Mr. Social Pants went on a trip with his friends so guess who is doing the data recording? Yep…me! I have to admit that it’s much better than the ‘exploding maggots in the microwave’ or ‘growing maggots’ project of 5th grade. Incidentally, the exploding of the maggots never actually happened. No one wanted to forfeit their microwaves.
I’m reading about the different so called ‘cures’ for autism. I’m dragging my feet when I should be jumping in feet first. I should go to a DAN (Defeat Autism Now) conference. I so admire parents who have been able to plow ahead and move forward in this realm. I want to be on board, but I’m looking (maybe selfishly) at how much energy and time I have to expend. I want someone to come to me magically and present an entire program for O. I want them to tell me where we are at, what we need to do, and what the outcome will be. A kind mentor in this process told me that I need to treat this like I’m curing cancer and to act decisively and now in order to get the best possible outcome. She’s right! Maybe I should stop thinking about the ‘what ifs’ and just go for it. No gluten, no dairy…just try! Ooooohhhh…just thought of something. The perfect time of year for this kind of focused commitment…LENT. Could I motivate to start this in 2 days? Yes. Why not. Okay, you just heard it first, for Lent this year, we’re going no gluten, no dairy. Hook, line and sinker.
mound of shells 