Friday, June 15, 2012

The Starfish




There are many different versions of this story. 
Apparently it was originally part of a longer essay by Loren Eiseley on human nature.


Once upon a time there was a wise man
who used to go to the ocean to do his writing.
He had a habit of walking on the beach
before he began his work.

One day he was walking along the shore.
As he looked down the beach,
he saw a human figure 
moving like a dancer.

He smiled to himself to think
of someone who would
dance to the day.
So he began to walk faster to catch up.

As he got closer, he saw
that it was a young man,
and the young man wasn't dancing,
but instead he was reaching down to the shore,
picking up something
and very gently throwing it 
into the ocean.

As he got closer he called out,
"Good morning! What are you doing?"
The young man paused,
looked up and replied,
"Throwing starfish in the ocean."

"I guess I should have asked,
why are you throwing starfish in the ocean?"

"The sun is up and the tide is going out.
And if I don't throw them in they'll die."

"But, young man, don't you realize that
there are miles and miles of beach
and starfish all along it.
You can't possibly make a difference."

The young man listened politely,
then bent down, picked up another starfish
and threw it into the sea,
past the breaking waves.

"I made a difference to that one."


I first heard this story while studying education at IU, and for me it exemplified why I wanted to be a teacher.  I wanted to help others. I knew I couldn't reach every child, but changing even a few lives would be enough and would bring meaning to my own.




Now as an Autism mom, this story means even more to me. I had no idea what an impact Autism would have on my sense of self and purpose. There are so many starfish out there, gasping for air on the mysterious beach called Autism.  They are so close to the water that could help them, if only someone would come along and pick them up, and put them in. Each one that I can touch is a life changed.


Sometimes I think maybe my blog posts come across as arrogant, as if I have all the answers.  I just want to say that I don't. I struggle every day to try to figure out the best choice about each decision I make. It's hard to know what's working, and with Autism it seems like there are always two steps forward, and one step back. Or two steps back, then three forward. : )  



The worlds of Autism and nutrition have so many grey areas. There's no one solution, and each child is different.  I've certainly seen that with Rylie. The GFCF diet wasn't enough. Taking away rice milk wasn't enough. She still had constant diarrhea and illness.  I've had to keep trying, continue to learn more, seek more experts, get more opinions. I'm not going to settle for her being sick all the time. It's not fair to her when there's the possibility that she could be healthy, if only I could figure out which ocean is Rylie's little ocean, where she will thrive.  We'll keep walking 'till we get there, my little starfish. Don't worry, Mama's got ya. We've still got lots more beaches to try. : )



Me and the Rylie girl

Already this morning, after just one week of trying the SCD diet (and not doing a great job of it) she had a formed BM, her first probably since January.  This gives me great hope that I'm two footprints closer to the right beach and the right ocean for my Rylie. Hayden, meanwhile, is swimming and splashing and having a wonderful time in his own ocean.  He's not what I'd consider fully Recovered from Autism.  But he's in the right ocean, and a long, long way from the plain, dry, Autism Beach. Now he just needs time to soak in there and let it all get sorted out.



Maybe what worked for my children won't work for yours.  But the journey starts with learning what options are out there, and trying something.  Because trying matters. I get frustrated when I see people like the man in the story, who see all the starfish on the beach and don't even try.  They hear the word Autism and they sit down and take a nap. You won't fix everything with Autism, or with Life. Nothing's ever perfect.  But small gestures do matter. And when we're talking about changing a person's quality of life, these small things are everything.





If nothing else in my life, I will be able to say, "I made a difference to that one."  Two ones, actually.  : )  Like I said, maybe it sounds like arrogance, but I don't mean it to be. It's just a small bit of pride in a time in my life when it's hard to find things to be proud of.  But I'm proud of what I've been able to do for my children, and I enjoy sharing that journey with others, in the hopes that a few more 'starfish' will be saved.





Some of our local starfish testing the waters. 

For more information on Autism and diet, see The Autism Diet page 
or TACA's  Going GFCF in 10 Weeks.  



Go ahead, toss a few starfish.  See what happens.   : )



Hugs,
Sheila

Monday, June 11, 2012

Registered DAN Dietitian to speak in Indianapolis

If you're in the central Indiana area and are interested, my dietitian has agreed to come do her presentation on Nutrition for Autism! 


Wellness Philosophy


July 12th, 6 pm 



Registered Dietitian Staci Small will share ideas on simple changes you can make in your child's diet to help change some of the behaviors common to autism (stimming, ADHD, attention span, willingness to try new foods, vocabulary, eye contact, stomach troubles, food allergies, etc.) 



Open to the public. Free.




Located in the training room of the main building of Cornerstone Autism Center. 360 Polk Street, Greenwood, IN 46143.   Come in Door B, go down the stairs, and turn left.





Staci Small is the only Registered Dietitian on the DAN registry in the state of Indiana and is trained in the  Defeat Autism Now!® (DAN!) nutrition protocol as well as the other underlying physiological issues of ASD.  


Dietitians are the only nutrition providers able to practice in a clinical or hospital setting.  Dietitians have to go through rigorous education requirements and continuing education versus a nutritionist.  Unfortunately, there is nothing governing the term nutritionist, so there are many people out there that call themselves nutritionists that have no formal education or have passed boards to carry credentials.  This is important for parents to know as they may find a nutritionist that knows nothing about special needs diets or DAN (regarding digestion issues, supplementation, testing, etc).  Most nutritionists and dietitians focus on weight loss, diabetes, heart disease, etc.

For more information on Staci's credentials, see: http://thewellnessphilosophy.com/about.htm 

For me personally, Staci has been a great resource, cheerleader, problem solver, and such a huge reason my son is on the road to recovery for Autism.  If you live in the area and would like to hear more about what the diet's all about and how it works, get a sitter and come hear her speak. You will be inspired!

: )  Sheila

Sunday, June 10, 2012

Quick Updates

Lots going on here.  Full posts to come about the doctor appointments, but wanted to give some quick updates here.

Had a flat tire a few weeks ago. Was late to pick up Hayden from daycare but he ended up making it to baseball just in time to bat, which was good. He really enjoyed playing baseball on the special needs team. I'll have to find another organized sport for him to participate in this fall.

Took Rylie to Hayden's DAN doctor for her own appointment. Dr. agreed that she has leaky gut like Hayden, but her situation is worse. Wants me to do the GAPS diet with her, but I don't have the emotional energy right now. She said 2nd choice was SCD diet, so I've taken away most grains and intend to continue until I have all grains out of her diet for a while. She has been feeling much better. Daycare commented that she's more talkative, smiling and happy. BMs are improving.  The pot roast I made was not a favorite with anyone but me, but hamburger, chicken and carrots are a success. Going to see the dietitian tomorrow for more food ideas.

Took Rylie to Riley Hospital for a feeding evaluation. She has a feeding disorder-- she isn't biting off food but is instead pushing it into her mouth with her finger, doesn't move the food with her tongue, and isn't chewing it enough with her back teeth. They want to see her again in a few weeks to begin therapy to teach her how to do this.

Her blood tests came back fine for lead, protein levels, celiac, and blood count. Her iron is still a little low. Haven't heard back about the second round of tests yet.  Poor girl had to give blood twice in one week. The second time she didn't really even cry, just sat there and watched.

Hayden had his own DAN appointment, where I explained that I've been so busy cleaning up after Rylie's poo adventures that I haven't had much time to implement the changes she recommended for Hayden from 4 months ago (Kelp, baking soda, K, B12, etc.)  The Dr. gave me some things I can do in the next few weeks, and ideas for helping him pee (it's a yeast issue: baking soda in the bath will help, for one).

Hayden has been having BMs on the potty every day at school and sometimes at night at home for a week. I think the star chart and some big motivators (Children's Museum, Angry Bird, Chuck E Cheese) helped, but the main part was that his BMs were firm enough for him to have time to get to the restroom, and he was finally cognitively ready to make the choice to use the restroom.  It will be a financial and emotional relief not to have to clean up his diapers all the time.

Picked a new apartment to live in, a little bit cheaper, ground floor so I don't have to keep lugging Rylie up and down the stairs, pond view, pool, free zumba class. I was hoping to rent a house but just couldn't find anything in the right area.  We're moving to live in Perry Township schools so Hayden can attend Mary Bryan Elementary. He got to tour the building on his birthday and after meeting the speech therapist he said, "I'm not scared anymore."  They've noticed an marked improvement in his behavior at school. I think it's likely because he's not dealing with the anxiety of elementary school any more since he's at least seen it and seen some of the people there. Will try to take him to their playground this summer so he can get another idea of fun things he'll get to do.

Received notice of the divorce filing on Friday. Disappointing but expected. Just hoping the end result helps me finally be able to pay my bills. I'm working every day this summer which will hopefully help me get caught up.

Trying to pack and get paperwork started for Hayden to attend his new school. Had his friends birthday party yesterday at the pool and it was a great success. All the kids (many with Autism) had a good time, no big meltdowns.  Hayden and I got a bit sunburned because I thought to reapply sunscreen to Rylie but not us. Rylie still isn't sure she likes the swimming thing-- too cold, too much splashing, and why do I have to wear this big vest?  She did enjoy coloring on the pavement with sidewalk chalk, and trying to eat it.

Thankful for all the family members and friends who have helped me out this month, even if it was just a kind note on Facebook.  Looking forward to more swimming in the next few weeks when we have a chance.  Hope everyone is enjoying their summer days.




Saturday, June 2, 2012

Hayden Loves Angry Birds

The other day Hayden announced, "Mommy, Mario and Sonic isn't my favorite anymore. Space Angry Birds is my favorite." He has been playing the newest version, Angry Birds Space, at Cornerstone as a reward. 

For his birthday the only thing he wanted was a "Space Angry Bird."  Everyone kept asking him what it was called, so he named it Super Bird.  


He also got money from grandparents and wanted to order the purple bird online, which he has named Laser Bird. We are still anxiously awaiting Laser Bird's arrival.

Continue Reading


Taking Supplements

Hayden explains why he gets tired of taking his supplements: 


(Sorry the end is blurry, I tried to brighten the color since it was so dark.)

[The end of this video is another example of repetitive motions and stimming (his feet and his Mario toy).]


Hayden learned to swallow pills at Cornerstone with ABA therapy. You can see that he puts the pill in his mouth, uses his tongue to move it to the back, then gets a bit of liquid to swallow it.

Ideas to help your child swallow pills from TACA.  (I assume when they say to use a piece of Starburst candy, they mean to pull a small bit off the candy, not to use the whole square.)  : )  

For Hayden I purchased empty gelatin capsules from Amazon.com.  I started with size 4 and moved to size 3 after a month. (I didn't teach him how to do this, it was the wonderful people at Cornerstone. I just ordered the pills and sent them in to school.)  Here is a pill size chart so you can see what the different sizes are.  Most of the pills Hayden takes daily are probably size 2.  Once he mastered taking the empty size 3's, I sent in some real pills (enzymes) that were size 2.  It took him a few weeks but he eventually mastered it.



These are the enzymes we take. You can order them here.  These help you digest proteins, carbs, and fats. They help when your child has eaten something they shouldn't have (such as something they are allergic to).

Below is Hayden's current supplement chart.  The gray areas are things he needs to start but hasn't yet.  The muffins have omegas, cholesterol (his is very low) and protein.  This is a post from January about the benefits of some of his supplements
 
More Information: 

Overview of supplements by TACA (getting started).

This is a good site to research specific supplements for Autism.

Nourishing Hope for Autism has some good videos to help you learn the science behind the nutrition-Autism link.  I highly recommend her book, as well.