Thursday, September 29, 2011

Surprises



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 Amazon.com 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?"
Yeah! 
"Do you know what that is?"  
Yeah! 
"What is it?" 
...What is it?,  he repeats. 
: )
"Autism is your super power. It's what makes you special."


Wednesday, September 7, 2011

It's Rainy Today

It's rainy today, which mirrors my emotions.  My professional life is awesome. My kids are awesome. And meanwhile my marriage has apparently come to an end.

I was going to completely ignore the subject.  But it has been affecting Hayden's life, and so it will need to be mentioned.  At the moment I'll say that I'm grieving the loss of what I wish had been, and yet I am already a more confident person.  It is going to be a messy divorce and has left me very sad.  I feel betrayed and angry.  I am going to counseling and it is helping. Right now I just need prayers for myself and my kids, that we make it through this next stage of our journey and become better people than we were before.


Today I took Hayden to his DAN Doctor (Defeat Autism Now).  It was a great opportunity for me to ask lots of questions about his treatment.  We talked about his anti-fungal and antibiotics, what supplements come in liquid and how I can more easily get him to take the new supplements; an alternative to the B12 shots (nasal spray), an alternative to the cod liver oil since he doesn't like it; how to get him to drink more liquids, what to do about his tummy hurting all the time, should I stop giving him Epsom salts to help his BMs, how to give activated charcoal, and which supplements to move on to next from the list she wanted him to add.  We went over his blood test results, she checked the spots on his back (could be chicken pox, she's not sure; he's had the shot but apparently you can still get it in a mild form, which she said would be good for his immune system. It could also just be spider bites.)  We discussed which shots I should give Rylie, including no MMR before age two.  




I have been in contact with his school Cornerstone in regards to his behavior plan.  I had concerns that they were encouraging his negative behaviors rather than stopping them. They have made some changes.  I am waiting to see how the new plan goes for a few weeks before I meet with them again to discuss it.  So far the changes look good.



I have implemented a star chart at home to encourage him to do things like brush teeth, take a bath, take his medicine, etc. It is going well. I started with only 10 stars so he could get a prize quickly.  He was so excited about doing jobs that I made the next goal 30 (20 more), but that was a bit ambitious because he lost some enthusiasm after getting his second prize (another angry bird).  The nice thing about the chart is that I'm able to use it to get him to do things he doesn't want to do.  When he refuses to do something, I've never had anything to hold over his head (he doesn't care about anything being taken away, or time out, or things like that).  Now I've been saying, "do you want me to take away a star?" and he does the request right away (take his medicine, clean up, get off the computer, etc.)  I tried a star chart a while ago and he wasn't ready for it yet.  I was afraid that was still the case this time, because at the end of the first day he was demanding his new toy. But we made it through that and he now gets the concept that he won't get his toy immediately, that he has to collect enough stars. I told him he would get 2 stars for going to the doctor today ; )  and two if he went poop on the potty. It worked to get him to eat some fruit the other day, too.  So I'm pretty happy with it.  I just need to make space for more things, or maybe make it task-related rather than day-specific (you could get three stars a day for medicine, versus just one for example.)  Anyway.


When I tell people how much time I spend each night on the kids, I don't think they really understand or believe me.  So I thought I would make a picture book about it. : )

bath (not every night because I just don't have time).  I add 1/2 c of epsom salts at the start to help Hayden detox. It helps your body remove heavy metals and allergens, which Autistic kids' bodies aren't good at doing on their own. Often bath depends on how dirty the feet are, or how poopy the butts.  : )   But at least once every three days or I'd feel like a bad mom.  : )

feed Rylie .  She usually has two bottles in the evenings and some type of finger food.  This is apples in a mesh chewer.


give Hayden his allergy medicine and anti-fungal

make Hayden's "chocolate milk" with almond milk and four supplements in it (usually a multi-vitamin called Super Nu Thera, probiotics, an enzyme, and maybe calcium or something else.) 

check each thing I give him off of his chart.  Note any major behavior problems or illnesses.

These are some of his supplements.


give Hayden some fruit and hope he eats it between You Tube videos about Mario



make 2 bottles for this evening and 3 bottles to send to school.  Each bottle has 6 oz water, 2 1/2 scoops of Alimentum formula, and 1 1/2 T rice cereal. You have to warm each bottle or it won't mix up.


Each bottle I send to daycare has to be labeled with her name, the date, and the time I made it (not my rule, theirs).  I print them out ahead, but I still have to cut them and tape them to the lids each night.



I have to send two empty cups to daycare in his backpack each day with supplements in them.  Otherwise I don't have time in the evenings for him to get all his supplements in.  The one labeled milk has an enzyme and Super Nu Thera in it, because the enzyme is kinda yucky in juice.  The juice one is either Super Nu Thera or Vitamin C.


Empty Hayden's backpack and lunch box.  Usually has the notebook, a folder with his work, and two dirty cups.





respond to the therapists' questions and make my own notes in Hayden's journal that goes back and forth to school, and tell them about anything major in his evening (huge tantrums, illness, not eating or sleeping, big changes in language or development, etc.) 


Put his anti fungal medicine in a baggie and label it so the therapists can give it to him at lunch. He has to take it three times a day.





Take the dirty bottles out of Rylie's daycare bag and (maybe) wash them.  Usually they just end up all over the counter until Friday because I just don't have time.


Wake up Rylie

Play with Rylie

Play with Hayden

Lay out their clothes for tomorrow.  This picture didn't come out well.  We do have lights at our place, I promise.

Ignore pile of clean laundry that needs to be put away.  Leave it right about there for another week.

Ask Hayden to brush his teeth.  Hope it goes well because I don't have time to supervise.

Make a juice cup to put by the bed with a supplement in it.  He wakes up nearly every night at 3 or 4 and wants a drink. I can't get the kid to drink anything, so this is a great opportunity to get liquids in him. If I make it before bed I can just reach over and hand it to him instead of having to get up and make it.

Label some Chicken Nuggets with his name to send to school tomorrow for his lunch.

Remind Hayden to keep brushing.


Pick up chair that Rylie's trying to climb over.


Figure out which kid needs a new diaper.

Change one or both diapers. (Hayden actually wears a pull-up.) I usually have to change a poopy one for both of them in the morning and at night, so 4 a day.

Ask Rylie not to eat the Lego door she found while I was changing Hayden.  I don't usually let her in this room, as Hayden leaves his toys everywhere. The family room is "her" room where anything she finds on the floor should be one of her toys and therefore safe to eat.


Make dinner for me and Hayden:  regular pizza and Gluten-free, Milk-free pizza. Make sure to use the pizza cutter to cut his before mine, or I'll end up having to wash 2 pizza cutters (because mine with wheat can't touch his food.)

Read a bed time story. These are Hayden's recent favorites from the library.

Tuck him in bed and let him play some Angry Birds so he'll get sleepy.  Feed Rylie her last bottle and put her to bed.  It's usually 8:30 by now, which is when I look for my cold dinner, reheat it, and eat in front of the tv for 10 minutes.  Shoo, are you tired?  I am. : )



Tomorrow is the parent meeting on nutrition.  I think 4 whole people are coming, one being my mom, but that's better than the zero we had last time.  : )  Maybe next month we can find a topic people are more interested in, who knows.

Bob moved into his new house over the weekend and we had fun getting together for a cookout.  Hayden got upset when he accidentally threw the ball over the fence when playing with the dogs, but he just pouted instead of having a major tantrum about it.

Today on the way to the doctor he was asking Why questions: "Why do fish swim?  Why do birds fly? Why is the moon so big?"  He had to get his blood drawn today but he did well.  I told him he was very brave when he was done, and they had an angry bird sticker he got to wear.  When I took him to school he told his teacher, "I was very brave."  I love in the evenings at bedtime when I say, "I love you Hayden" and he says, "I love you too, Mommy."  He's an awesome kid. I am going to work on counting my blessings. : )