Monday, April 30, 2012

Truly Blessed

There are some times when I see a "typical" family doing something, and I wish for a minute that my life was different.

I wish I could
  • take my kids to Dairy Queen, and sit outside on one of their picnic tables, and eat ice cream. [I can't because my kids can't eat ice cream.]
  • go through the McDonald's drive-thru when I'm tired and don't want to go home and cook. Instead I have to go home and cook three different meals, every night, because there's nothing at McDonald's that my kids could eat.
  • not have to decide between buying vitamins for my child and paying my bills.
  • wake up on a Saturday morning and play with the kids, or have coffee, or just ease into my day. Instead, as soon as I wake up, I brace myself to change 2 poopy diapers, and often a poopy chair, or floor, or bed, or...  I make my way to Hayden to see what kind of poopy mess awaits me.
  • see a recipe on Pinterest and just make it for my kids, and not think, "Nope, that has wheat/milk/oats/almond/sesame so someone can't eat it, I'll need to substitute x for this and y for that and... aw, forget it."
  • be able to go to a birthday party and not have to pack my own cupcakes.
  • be able to let my son eat the free hotdogs they're giving out at his baseball game.
  • not have to worry about IEPs, supplements, behaviors...
  • be able to relax on the couch after work and not have to be on guard for someone to jump on me from behind.
  • not have to listen to screaming for two hours because of a small change in routine.
  • not live at the doctor's office:  neurologist, ENT, dietitian, pediatrician, developmental pediatrician, DAN doctor, allergist, speech therapist and feeding specialist, OT...
  • not have to look at my son's easily-bruised arms, or see him having a random Autism meltdown, or hear him tell me his stomach often hurts all day, and feel guilty.  Why was I too lazy to skip his vitamins last night?  Why haven't I done more?  I need to work harder!

But Autism has changed my life for the better in many ways, and I'm grateful for these things:

  • As Rylie learns language early, it's twice as wonderful and amazing to me, because I never experienced the typical progression of language with Hayden, and because it's a sign that she is going to be typical.
  • I know more about diet and nutrition and toxins than I ever would have taken the time to learn, because I had to learn it to help my children. 
  • Cleaning up my children's diets actually led me to clean up my own diet. I'm now healthier and feel better than I ever have.
  • I have been able to pass on resources to so many parents and teachers, hopefully having an impact on many kids.
  • As a teacher I understand kids better, and know what to say and what to do when they feel frustrated.
  • Going to a special needs events like his first baseball game makes you appreciate the little moments. He got right in there and played, hit the ball, ran the bases, and had a great time.  I was so proud of him. Seeing what he can accomplish, with a smile on his face, is so rewarding.
  • Being a part of parent groups and online communities in Autism has allowed me to feel comfort that others are fighting the same struggles, and many children are recovered from Autism. 
  • Autism gave me a reason to blog, which means write, which I may not have done otherwise and thoroughly enjoy. 
  • Seeing the change in my son over the last two years has been unbelievable.  He is a different child.
  • Going through the process of biomedical treatment with Hayden allowed me to recognize symptoms in Rylie and get her help sooner, conceivably preventing Autism in her and allowing me to treat her gut issues sooner than I would have otherwise.
  • Every phrase my son utters to me is a miracle.  Every smile, every hug, every laugh is a treasure. 
  • My children are the best gift that God could ever give. Except that, He also gave me a child with special needs, but not without giving me the means to help him. To fix him. Is that not the most precious gift, to be able to heal your children? To give them a better life? 

Living with a son with Autism has made me a better parent, and a better person. I thank God for my children and this opportunity to help them, and others, have a better life.  I am truly blessed.


Hope is the thing with feathers 
That perches in the soul, 
And sings the tune--without the words, 
And never stops at all,

And sweetest in the gale is heard; 
And sore must be the storm 
That could abash the little bird 
That kept so many warm.

I've heard it in the chillest land, 
And on the strangest sea; 
Yet, never, in extremity, 
It asked a crumb of me.

~Emily Dickinson

Follow #AutismPositivity2012 and #youmightbeanautismparentif on Twitter for more positives about Autism.

Saturday, April 21, 2012

What Causes Autism? How do you prevent it?

This is only my opinion, but here it is.   And sorry if I sound like I'm getting a bit worked up here, but some of these points start to make me feel pretty angry.

1. I think people have a genetic predisposition (something; science has more to figure out about this part) to have Autism.  Autism is a condition tied to your immune system and the health of your gut. Someone with the predisposition, along with harm to their immune system or gut, will develop Autism.

2. Babies are covered in chemicals from birth, and receive chemicals in the womb. (Johnson and Johnson soap, for example, is really bad for you. PJs are coated in chemicals. Lead in toys. Pharmaceuticals in water. Teflon. Fragrances. Preservatives. Flame retardants, BPA, insecticides. Mercury, fluoride, copper, etc.)  Hayden has lead and copper poisoning, among other things.  These chemicals harm our immune systems and damage our overall health.

Click the Read More link to continue reading:

The Poo Adventures of Rylie Noelle

Dietitian:  "I don't think it's the rice. I've never seen anyone react to rice."  Oh, don't worry.  If it's anything at my house, it's that we like to be the exception to the rule.

Well, where to even start. I know this blog post about Rylie's Adventures is long overdue.  The reason is because it's a story that spans over a month's time, and I've been thinking I wouldn't be able to do the story justice, or would forget some key parts.  And, because I've had to recover physically and emotionally from the event.

When Rylie was still on a bottle, she had trouble with constipation.  When I switched her from Alimentum to Nutramigen and then to Goat's milk, the constipation went away.

Then, I mentioned back in March that Rylie had diarrhea for two weeks straight. That caught my attention, of course, since she was prone to constipation, not diarrhea.  Well, it continued. For a month.  And I'm not talking about a runny diaper that was annoying to clean up.  I'm talking about every morning before work, walking in to find a baby, and her crib, covered in liquid poo.  Down her legs, on her arms, everywhere.  It had come out liquid-y while she slept, and then she'd rolled around in it.

So nearly every morning for a month, in an already busy and hectic morning rush, my alarm would go off. And I'd think, 'Ok. It's go time.  Let's get this started.'  Walk into room to find happy, awake baby Rylie, covered in nastiness.  Put said baby (who usually loves baths but since it's the morning and not her idea starts to cry her eyes out) into the bath.  First wash all poop off, let water out, wash again because poop really makes me paranoid.  Dry off and try to diaper squirmy baby. Put baby in family room with brother, strip crib sheets, throw them in washer with the clothes she wore to bed (and wash a second time after work because, yes, I'm paranoid).  Get clorox wipes or bleach solution to wipe down crib mattress and sides of crib.  Then check on Rylie's diaper and perhaps change her a second time, because some mornings she had had diarrhea again while I was cleaning up.

It looked a little something like this, but it was not spaghetti:

(It wasn't really on her face, just everywhere else. Including her hair.)  : p

By week 3 or 4 I had figured out (after trying putting her to bed wearing two set of pants, or two diapers) that putting a disposable diaper on her and then a cloth diaper on top, and making it pretty tight, kept most of the poo in so that I could skip the bath part.  But by then I was worried.  What in the world was going on with my baby girl?  Was it yeast?  Hayden has had terrible diarrhea from yeast for his whole life.  I started increasing her probiotic intake.

Click the Read More link to continue:

Wednesday, April 18, 2012

Easy GFCF Pizza Recipe

I got the idea for this from a mom at Gymboree two years ago.  Rather than making a whole pizza for Hayden, (which is time-consuming and expensive to make the crust, and then goes to waste because he only wants a fourth of it) another mom said she uses rice bread as the crust.  Genius!  Another virtue of using rice bread is that it freezes really well. (Although I can't say that this is not also the case for GF pizza crust, since I've never tried it.)  Using rice bread is also handy because the portions are already cut out for you.  He usually eats two 'slices' per serving.

I use EnerG White Rice bread, or their Tapioca bread (because I convince myself it's closer to SCD compliant, when really it's probably not.)  SCD is the Specific Carb Diet that I'm supposed to be putting Hayden on but haven't had time/money/energy to tackle.

Click the Read More link to continue:

Wednesday, April 11, 2012

29 Iran?

Apparently Hayden has a fan base in the Ukraine!  (And many other countries.)  Glad to know that Hayden's story is helping others, no matter where you live!  I have heard that Autism services are very hard to come by in Germany.  I would be interested to know what services and public feeling about Autistic people are like in other countries. 

Feel free to leave a comment and let me know what you'd like to learn more about, no matter what country you live in. Questions are welcome, and I'll try my best to answer.  

Take care, and thanks for reading!

Friday, April 6, 2012

What Autism Looks Like: Hyperactivity and Overstimulation

In this video he is singing along to the Super Why song on the TV, but not using any words. I think the arm movements are supposed to be dancing but they're very close to stimming.  When I ask him to eat and he yells, this seems to be a hyper auto-response rather than anger, because he next says, "alright."

In this next one, you can see how overstimulated he can get in the evenings. I often have to keep my guard up, because he will surprise attack me by ramming his head or body into me.

Ways to help with the hyperactivity are zinc and baking soda, which have calming properties; exercise; and deep pressure, bear hugs, and squishes.  (Of course, ask your practitioner before adding zinc!)

Why am I posting these videos?
Several reasons.

I hope that they will help educate people about what Autism is and isn't.
I hope they will help parents realize that their child may need to be diagnosed for Autism.
I hope they will help parents already dealing with Autism learn ways to cope with its symptoms.
I hope that some day Hayden will be recovered from Autism, and these videos will be evidence of how he once acted, and that Autism is treatable.

Wednesday, April 4, 2012

What Autism Looks Like: Unable to focus on a task

This is an example of what sometimes happens when Hayden is asked to carry out a task.  Sometimes he gets distracted and never finishes the task.  In this case I asked him to go potty on his own, and then checked up on him a few minutes later.  You can see that he is zoning out and stimming.

This is also a good example of being unable to focus on the speaker in order to answer a question. It takes me three times to get his attention. Because he is zoning out, he is unable to respond to my question.

When I finally get his attention he says, "I did. I don't want to. I am, I am."  This is an example of a processing delay.  In his mind he was already arguing with me that he did, then giving an excuse that he didn't want to, and finally agreeing that he would. But it took a while for his speech to catch up with the process his mind had already completed.

If this video doesn't load, please try again later. I have no idea why videos sometimes don't work through Blogger. I will try to catch Hayden demonstrating this behavior another time and post it to YouTube instead of through Blogger. 

Why am I posting these videos?
Several reasons.

I hope that they will help educate people about what Autism is and isn't.
I hope they will help parents realize that their child may need to be diagnosed for Autism.
I hope they will help parents already dealing with Autism learn ways to cope with its symptoms.
I hope that some day Hayden will be recovered from Autism, and these videos will be evidence of how he once acted, and that Autism is treatable.

Tuesday, April 3, 2012

Open for Business: Lavender's Garden!

For a while I've wanted to create a place for Autism information, not just my stories about Hayden.  I want to continue Hope and Lavender, as it's been a very cathartic experience for me.  But I wanted a page that linked to documents, sites, and blogs for people seeking information, whether they are parents, teachers, therapists, family members, or just people interested in learning more.  The blog format is difficult to organize in a manner that's quickly accessible.  I give out Hope and Lavender's web address often for parents new to the Autism community, but it's not quite what they're looking for.  They want to know, "How do I start the Autism Journey?  How do I get started now?"

And so I've started a new page called Lavender's Garden.  I have lots more to add here, so check back often. : )