Thursday, September 29, 2011


Sometimes the things you do as a parent, and especially as an Autism parent, are kind of surprising.

New things, for me anyway:

1. I bought lard at the grocery store.  I didn't know they even still sold lard. Who buys this stuff on purpose?  Me apparently... I got a call a few weeks ago from Hayden's DAN (Defeat Autism Now) doctor that his blood test results showed his cholesterol was so low that he would need to eat 2 eggs a day.  The nurse on the line said, "Does he eat eggs?"   Um... are there eggs in pizza?  Then no.  : )

So, I tried frying some chicken breast, first coating it in egg.  He ate it one day, then didn't want any more and I ended up eating the rest. I tried making him some scrambled eggs (using almond milk instead of cow's milk.)  He ate one bite to earn 3 stars for his chart (I bargained to 3 after he wouldn't accept 1 or 2. He wanted to just lick the egg and I held firm that he had to actually eat it.)  He ate the one bite, and when I asked if he liked it or wanted more, he of course said no.  Can't blame him, they were kinda weird with the almond milk. Kinda sugary.  Might try rice milk next time. Soooo.... tried finding foods like chips that had cholesterol in them, but nothing does anymore because everything's made with vegetable oil now instead of animal fat (and cholesterol comes from animals.  Who knew?)

Hugging his sister.  They roll around and laugh.

Then I went to the health food store and said, "Do you sell cholesterol?" This was apparently a first for the lady there, too. "You mean to lower your cholesterol?"   'No, I mean cholesterol.' Blank stare.  "No one's ever asked me that." Guess that's a no.

So I drove to Walmart, and bought myself a nice little tub of lard. Of course they had lard at Walmart, I shouldn't have been surprised when I saw it there, but I was. I used the lard in his muffins this weekend in place of vegetable oil. So he's getting a little more cholesterol, but not enough.  I'll have to work on getting him to like eggs.  Gonna have to make lots of different kinds of eggs and see if there's one he likes. (By the way, apparently you need cholesterol in order to make hormones, which help the adrenal system... growth, thyroid, etc. So kinda important.)

At Chuck E Cheese

2.  Hayden went with a friend and his parents to an Autism Walk one day and Chuck E Cheese another day without meAnd he didn't freak out or have a tantrum or anything.  He followed directions and had a great time. WOW. 

Warning:  TMI ahead....

3. Probably every parent has had to fish poop out of their child's bath at least once.  It happens.  Well I did last week, but with a surprising and good end to the story.  I know, how can any story that starts like that end well?  (Sorry if you're offended, but as they say at the Autism parent meetings, pretty much every conversation between parents about Autism ends up in a poop talk.) Anyway.  Because Hayden has spent his whole life with diarrhea, which passes easily, he's never known what it's like to feel like you need to go poop.  He's lived 5 years, and now that he's feeling that, he doesn't know what to do about it, and so he doesn't do anything. He doesn't go. And so he's getting constipated.  So when he was holding his stomach in pain the other night and I was trying to figure out what he had eaten that he shouldn't have, I realized he hadn't had a BM in two days and that he probably needed to go.  So I put him in the bath with 1/2 cup of Epsom salts and told him to blow bubbles in the water (the bath and drinking the salts helps ease constipation. Didn't know that 'till I was an Autism parent, either.) I went to the kitchen and came back after maybe 3 minutes, and there were poops floating.  I asked him if he was done and he said no, so I grabbed him and put him on the toilet. 

Now just last week when he was on the toilet, he was too scared to go. But since he was basically already going this time, he just kept going.  He was SO excited that he went, because I've been promising him a Sonic the Hedgehog toy if he goes.  I just wasn't expecting him to actually do it any time soon, so I hadn't ordered it yet.  I figured when I had some money I'd order it and have it waiting in the closet for the special occasion. 

So, I was worried, because the Hayden from a year ago would not understand having to wait for the mail to come in a few days and bring his toy.  The Hayden now did really well.  We made a little calendar, and I did something else I never do, which is to pay for shipping on so he could have it earlier (I usually wait to there are 3 things I want so I get free shipping.) So tonight (Lord, let it be so) we should be opening the box with the new Sonic toy in it.  At school the other day they asked the kids to say what they were excited about, and Hayden said "cause when I go poop in the potty and I get Sonic!"

Washing his hands.  Actually when I walked in he was standing there like this, not moving.  Long enough for me to get the camera, come back, and take the picture.

4. Not having to explain to people at the store, every time we go, that Hayden is Autistic.  It used to be if I took Hayden anywhere, by the end he was overwhelmed by the sounds and lights and people, and would be screaming in the checkout and trying to run away from me. Pretty much every time.  I'd be holding his arm with one hand, or holding his whole body in a football hold, while using my other hand to put the groceries on the belt, get my debit card out of my wallet, put the groceries back in the cart, and sign the receipt. He used to throw himself down in the middle of the store and I had to walk away from him as he was screaming to try to get him to follow me, or again pick him up in a football hold as we walked out of the store without buying anything.  But usually it was the former, because who wants to spend all that time filling up your cart and then just walk out without buying anything? 

So I'd stand in the checkout while he screamed, and people would walk by and say things like, "If my kid was acting like that I sure wouldn't be buying him toys."  In this instance the woman was referencing the big ball in the cart that I was actually buying for him to have gross motor practice and sensory input, but which yes, he would also have fun with. In this instance I kept my mouth shut.  But after a few more times like this I decided to say something.  I weighed the pros and cons of keeping his privacy versus putting it out there and I decided, This is who Hayden is.  He is Autistic.  He screams about everything. I've lost hearing.  Everything makes him upset and nervous and afraid, and he can only say two words so he can't tell you when he's scared or tired, or why. It defines him. At least for now.  Maybe I wish it didn't. But it does.

I don't reveal that he is autistic if things are going well, such as at the playground. But if he does weird things and gets stares, I put it out there. Maybe it will encourage people to have a little more compassion the next time they see a similar situation. I don't know, maybe it will remind people how prevalent Autism is. 1 in 99 kids born today in the US has Autism. 

What I see in the rear-view at the stop light every morning.

So I would say to the person, "He's autistic." That's all I'd have to say, and all of a sudden they were all smiles, and helping me, or giving me a pity look, or whatever. How about just giving people consideration and keeping your comments to yourself?  What if my kid wasn't autistic, but just had a terrible day and got upset, and you're going to make a comment? Is that supposed to teach me to be a better parent if I'm not doing a good job?

Well the good thing, and the reason this is on the list, is that I rarely have to say "He's autistic" in public places anymore.  This is surprising to me, because in the heat of Autism I thought it would always be that way.  I heard that Autism was curable, but I didn't really believe it.  Being able to get through a store without meltdowns is like a dream you hope for but know will never really come true.  Now, sometimes he does things still and sometimes I still do tell people; it is just so rare...Sometimes he doesn't quite play the way another boy thinks he should on the playground, and that boy will come to me and say something like, "Why isn't he talking to me?  Why doesn't he play right? Why is he repeating everything I say?" And I'll say, "Well, he's Autistic. He is special, and sometimes he doesn't do things the same way that other people do them. He's not very good at talking some times. He has different things that he's good at." And the boy will always say, "OK" and go back to playing with him.  Kids are so awesome at accepting others for how they are. I wish adults were the same. 

I've been teaching Hayden something based on a t-shirt I saw.

"Hayden, you have Autism, did you know that?"
"Do you know what that is?"  
"What is it?" 
...What is it?,  he repeats. 
: )
"Autism is your super power. It's what makes you special."


Beth Terry Merchant said...

Shelia I cook an egg, scrambled with a fork, by itself in a small bowl (like a glass pyrex custard bowl) in the microwave for 1 minute. Sarah calls it eggs in a cup and loves it! You could give that a shot. I can totally relate to the rude people in stores. I get looks all the time because I still put my almost 8 year old in the basket of the cart. She takes up most of the room, but it contains her! Keep plugging along, girl, you are amazing!

Bill Carney said...

Sheila, I would try egg dishes if he doesn't like them by themselves. I would go for an egg casserole of some kind. I've made a variation of a frittata before which is super tasty, easy to make and lasts the whole week. You take a bunch of eggs (say 12-16), beat them all in a big bowl. Take a bunch of veggies - whatever would be good in an omelet the more the better - chop, then give a quick pan fry in some canola or olive oil (or lard! ;) ). Minced garlic is key if he likes that. Once the veggies are mostly cooked but not super mushy, pour into egg bowl and give a quick mix. You can also add in breakfast sausage or bacon (more cholesterol). If you do that obviously cook the meat first then veggies then add to eggs. Mix up the mixture and pour into greased casserole dish and go for something like 20 mins at 300 (until eggs aren't drippy). Super yummy and tastes great rewarmed in microwave.