Our Guardian & Thoughts on Avonte's Law

Every child with autism needs a guardian - we are blessed to have one furry guardian and one plastic transmitter "guardian."  Here is one of our stories about the wandering we deal with and think about every day. 

I don't know if I have posted before about Mr. O's tracking bracelet from Project Lifesaver, but I have been thinking a lot about it lately.  Mainly for two reasons.  

First of all, and mainly because of the Avonte story.  If you don't know about Avonte, he was a 14 year old boy with autism who went missing and died - they found his remains months later.  Poor sweet baby boy.  The other reason is because my boy broke his tracking bracelet and so he hasn't  been wearing it.  His running has been limited lately,  but since he is the master of surprises, this is not the best situation.  We've been waiting to hear about getting it fixed, but tick tock, the clock is ticking.

This past weekend, my anxieties were realized when Mr. O took off.  He went out in the snow to play with his siblings, and they all came in after a bit - but he tricked me and ran right back out the door and headed for the woods.  These are the woods, and while we are not talking about a deep, scary forest, there's still the water to worry about, and the fact that it was freezing and snowing added to the fun.

Of course I grabbed my coat, had my boots on already (moms with runners know that shoes should be on at all times, just in case) and ran out the door after him, but he was out of sight by the time I got out the door.  I didn't even take time to grab hat and mittens, but he is 12 years old and just that fast, stinker.

My awesome middle son and I headed into the woods and saw that since it was snowing, Mr. O left fresh tracks for us to follow.  Thank goodness, at least we knew which way to run.  As we got out of our yard and away from the hodge podge of other footprints, I noticed another set of footprints next to Mr. O's tracks.  Paw prints.  We followed the tracks through the woods, past the park, into the other side of our neighborhood and then right past our own street and into the next neighborhood.  I was FREEZING and snowing hard.  My boy was dressed for the weather, but still, this was not the kind of weather for a kid to be lost in. 

Then my 15 year old took off running - and I saw them.  Sweet relief flooded my senses.  

Our dog had slipped out the door without anyone even noticing.  She stayed by his side the whole way.  As soon as she saw us, she came bounding forward, smiling her dog smile because she knew Mr. O would be safe.  We almost didn't get a dog, because Mr. O had a deathly fear of them (and still does fear other dogs).  On this day, I felt such gratitude for the rescue that shared this wonderful guardian with us, and such gratitude to my good girl who kept the boy safe while he was running away in the snow.

Good dog!

The moral of the story?  There are a few morals of this story, the way I see it.  

1.  Kids with autism often "wander" - which sounds like a peaceful stroll, but can actually be a full speed chase, can happen when you least expect it, and they are not dumb so they will fool you, unlock doors, sneak away when you aren't looking or duck out a window.  Sometimes you do everything right and they still get away.  Tracking bracelets are  MUST.  Avonte's law needs to pass!  Every child who might wander away should have a tracking device available.  I don't understand why this is even a question.

2.  Dogs are great.  Rescue dogs are the best.  If you can find a way for your child with autism to have a pet, I think you should do it.   We opted for a young dog instead of a puppy because she was already trained and we could see her temperament - puppies are adorable but they are too  much work for this autism mama, and with so many older dogs in shelters, why not look there first?  You will hit the jackpot - we did.

3.  I really need to get Mr. O's tracking  bracelet fixed.  I should know by now that just because he hasn't wandered in months, it doesn't mean he won't surprise me a run right out the door.  Yes, we found him quickly and yes he was safe, but what happens next time?  Time to put a little pressure on the people who have promised to fix it for the last few months.  I'm not good at that, but the time has come.

My thoughts continue to be with Avonte's family.   My heart hurts for them, and at the same time my admiration for them grows.  Only twenty four hours after Avonte's funeral, his mother and grandmother stood with Senator Charles Schumer as he proposed the new law that would provide children with autism the tracking bracelets.   They know all too well how important this is.  If Avonte had a bracelet, could they have saved him?  It pains me to think - what a different outcome if Avonte had this device that costs under $100 and then a few dollars a month to maintain.  How much money was spent hunting for him?  How much money is spent looking for other kids with autism who wander away?  Why doesn't every at risk kid (or adult) have a bracelet?  It is time for this to happen.

Not every child is blessed like my son, with teenage brothers to chase him and a furry guardian to follow him through the snow and keep him from harm.  But every child deserves a way to stay safe and be found.  Big thanks to Project Lifesaver for our tracking bracelet, and to Puppies & More Rescue and Angela at The Animal Orphanage of Voorhees, for providing us with an amazing guardian.  I hope Avonte's Law passes and we never lose another child in this way.  What are we waiting for?

The End of a Weird Year

This past year was full of surprises.  Some good, some bad, some just ... surprising.  It has been a year of many changes, lots of growth and a few breakdowns along the way.  I don't have much more to share about the end of this year yet.  My mind is still spinning and when it stops, I might want to just leave this year behind and not revisit it.  Is that wrong?  Anyone else feel that way?  On to 2014 and hopefully it will be better than 2013, right?  

In any case, I have to share that I did finish my 365 project.  I had to fill in with iPhone pictures for part of the time since my camera had to go back to the mother ship to be repaired.  But the best camera is the one you have with you, right?  And I will be honest and say that I may have missed a day here and there and filled in with 2 shots from a better day.  Is that wrong?  Is it wrong that I keep asking if things are wrong and I don't really care about the answer to that question?  I guess we'll leave it up to the blog police to decide.

Here are some shots from the end of my 365.  I don't know if I learned much from the actual project, but having a year's worth of photos is definitely pretty neat, and I can see the progress I made over that time.  Plus it gives me a nice reminder of all that we did last year, good and bad.

Fun in the sun and a visit to the Statue of Liberty!

Lots of time spent at the farm and then back to school  (and then a trip to the beach the weekend after school started - of course).

Photography practice on many beautiful subjects.

Days at the US Open, piles of laundry 

and a visit with Grammy

The loss of Uncle Frank.

Many random photos from fall and winter.

Pictures of the boys.

And a whole bunch of my crazy girl.

And my final favorites:

Signing off with this shot of me, taken by my girl.  It makes me laugh every time, just wondering what that guy is thinking.  Probably something like, "She is crazy!"  And yes, that I am.  Looking forward to posting more in 2014, and I expect things will be as crazy as ever around here.

Peace out!

365 / 35-38 What a Week!

Things here have been busy in a way that is only possible when you have a kid with autism.  Plus three other kids with lives that don't stop.  But I have been making sure to get in at least one picture each day. 

This week I had one call from the school nurse, two kids home from school on different days, about ten extra loads of laundry because someone keeps overflowing the tub, pouring lotion in random places and changing clothes a few extra times a day.  On top of our normal activities, this week there was a doctor's appointment, a school art show and finally, on friday, I spent the day at my daughter's school playing photographer for the yearbook.  Oh, and then we had a snowstorm last night.  Is it wrong that I am just filled with relief to have a day to stay home?

Monday's theme (#35) was "Beat" and that is just how my girl felt after gymnastics that night.  I know this has a blue cast to it, but that is because the only light in the room was the glow from the TV.  Loving the low light capabilities of my new camera, have I said that before?  This has almost no editing, just a little crop and sharpening for the web - I can't believe I didn't have to lighten the exposure at all. 

Tuesday's theme (#36) was "Nap."  There was no napping that day.  Since Mr. O came home with tummy trouble on Monday, he could not go back to school on Tuesday.  Even though he was fine.  Even though I knew his tummy trouble came from eating something he shouldn't have.  Even though I had a boatload of errands to run.  Sigh.

So, he came with me to the store.  The Dollar Store.  The grocery store.  Staples.  The drug store.  And then, because I am a glutton for punishment, we stopped at Goodwill too.  Since he loves to shop, I was glad to take him.  It is always a treat to wind through a store, holding tightly to your 11 year old as he points to people and asks "Man or woman?  Long hair or short hair?"  Bonus if we run into a man with long hair, which will usually cause him to say, "MAN!  MAN!  Man with LONG HAIR!  He needs a haircut!!  Ewwwww (insert gagging sound) the man needs a haircut!!"   Most people are nice about it. Some are puzzled.  One man we met at Goodwill thought it would be fine to give Mr. O permission to rub his head and actually got mad at ME when I told him no.  Just trying to teach my kid some boundaries, call me crazy.  But I digress. 

After all of those errands, it was dance night, topped off with my girl's school art show.  So, yeah, no nap.

Instead you get a shot of beautiful Kindergarten artwork, and another low light shot in the snow.

Wednesday, I rejoiced at the thought of a kid free day to work.  Alas, not to be.  My girl woke up with a sore throat and stuffy nose.  Wednesday's theme (#37) was backlit.  Instead you are getting a shot of my girl having a little fun with oranges. 

Thursday, everyone went to school.  Can I get a "what what"?  I didn't get too excited though, since my girl had a half day and after school we had our monthly visit with our crunchy doctor. I do love the crunchy doctor, he has been helping us a lot, but with the two hour round trip drive and the inevitable one hour wait, it takes a lot of time and since insurance doesn't cover most of it, puts a hurt on my wallet too.  Ouch. 

The photo theme was "Use Your Senses" and while I am sure that I did use my senses all day long, I don't have any photo evidence.  Here's what you get instead.  Day 38, just to remind myself that even though he drives me bonkers, even though his treatments are breaking the bank, even though he overflows the tub, smears lotion on the floor and occasionally pulls his pants down on the bus, he is pretty awesome. 

I think I am going to stop there and do another post for Friday since this one is getting long.   Betcha can't wait.

Why Bother?

Some days, all this dietary stuff is hard.  I just want to get drive through for dinner.  I don't want to spend 20 minutes grinding up pills and spraying weird stuff into my kids mouth.  I don't want to think about all the detox and viral issues and yeast and bacteria in the gut.   I want to have the kid who takes a Flintstone vitamin every morning with his orange juice.  That would definitely be easier. 

But then I get an email like the one below and I remember why we are doing this and suddenly it is not so hard.  This is from Mr. O's teacher.  I have to say, we could not do this without fantastic teachers and therapists, and this year we hit the jackpot again with a teacher that Mr. O loves.  He wakes up in the morning and the first thing out of his mouth is "Zebra today?"  Yep, he calls his teacher Zebra.   For the record, if you are ever special enough to get a nickname from Mr. O, you will know you have a place in his heart.

OK, back to the email, here it is:

"So yesterday O  goes to his lollipops and pulls one out.  He walks up to me and says that’s a pomegranate -  that’s a good one.  He then asks me to open it.  So I do and hand it back to him.  He then hands it back to me and says no that’s for you Mr. D you did a good job. I thought you might like that story."

Yes I did like that story, thank you very much Zebra.   Grinding up those pills will be a little easier today.

Easy box mix cupcakes - fast and GF/CF/SF

Some days there is just no time to bake from scratch.   Here's something yummy and quick and also free of most common allergens - No gluten, casein, soy or corn, yay. 

Cherrybrook Kitchen yellow cake mix. 

Namaste vanilla toffee frosting.

Enjoy Life semi-sweet chocolate chips.

Make the cupcakes according to package directions - we use Earth Balance soy free spread instead of butter.  Then make the toffee frosting according to package directions.  Same deal with the buttery spread.  Finally, I melt about half a cup of chocolate chips and add it to the frosting - kids seem to like it better with a little chocolate in it - isn't everything better with chocolate?  

Finger lickin' good!

Marshmellows! GF/CF/SF and Corn Free!

Phew.  It has been awhile.  I'm not even going to try to explain.  (OK, I am going to try to explain, but not right this second.)  For now I am just going to post this recipe because I NEVER thought it was going to work and it did.   And I think this is something I need to share with the world. 

It started with a camping trip.  We were invited to join some friends to camp and I knew I had to come up with something for roasting over the fire.  We've done hot dogs before, but we all know that marshmellows (marshmallows?)  are THE thing to have when you are camping.  And S'mores.  So I started looking for something that would work for my crew.  I was looking for GF/CF plus no soy and no corn - and I was kind of hoping to avoid refined sugar.  Go ahead, start laughing now. 

I found this  recipe at the begining of my search and it ended up being my starting point with some tweaks along the way.  Here's a picture of the finished product to start you off, recipe after the photo.

Here's what you need to start with:

2 packets unflavored gelatine

1/2 cup cool water

2 cups Sucanat (a less refined sugar)

3/4 cup water

2 tbsp honey

1/2 tsp real vanilla extract

1/4 tsp kosher salt

1/4 cup tapioca starch

1/4 cup organic powdered sugar

(I used Trader Joe's brand as it does not have corn starch)

In a small bowl, stir together tapioca starch and powdered sugar.  Prepare a pan - Oil a large casserole or rimmed cookie sheet and spoon in some powdered sugar mixture to coat pan evenly.

In a mixing bowl (if you have a stand mixer, perfect), combine 1/2 cup cool water and gelatine.  Set aside.

In a heavy saucepan, combine water, sucanat, honey and salt.  Bring to a rolling boil and cook, stirring occasionally, until candy thermometer registers 238-240, firm ball stage.  (I will admit that I didn't have a thermometer and I just let it hit boiling and waited 15 minutes, but shhhh, don't tell.)

Turn on mixer (where you have the gelatine waiting) at low speed.  Slowly pour hot syrup into the bowl with the gelatine - carefully, it is HOT!  Mix until thoroughly combined, and then turn the mixer to high.  Beat until very thick, fluffy and lukewarm, about 12-15 minutes with a stand mixer.  Add vanilla extract near the end of mixing.  Here's how it looked:

Spread evenly into prepared pan and let cool at least 3-4 hours before slicing.  (I used one of my square stoneware bakers from Pampered Chef, and  let them  sit overnight) - as noted in the original recipe, the tops are VERY sticky so if you have pets or dust or anything floating around, you might want to cover them up.

To slice, remove the entire sheet of marshmellows onto a cutting board.  It will be tacky to the touch but not melted & sticky.  Mine did not pop out of the pan, I had to kind of pull the entire square out - it stretched but didn't break and the kids loved seeing it happen.   Grease a very sharp knife and cut into desired size.

I made ours fairly big because I knew we would be roasting them on the fire.  And yes, they are kind of a tan color because of the sucanat - if that really bothers you and you don't care about refined sugar, you can use regular white sugar instead.

Toss with remaining powdered sugar mixture until all sides are evenly coated and no longer sticky.  These will keep in an airtight container at room temperature for about 2-3 weeks.

They came out very much like "real" marshmellows, but with a slightly maple kind of flavor.  If you tell everyone they are special gourmet marshmellows, they will never know the difference.  I tested these out on a lot of people and I was surprised that everyone liked them.  I got comments about the color, but not one "this tastes kinda weird" or "...interesting ..."  and as you can see, my kids liked them too.  They even worked in S'mores. 

 Oh, and p.s.  I hurt my back last spring and it has taken me this long to catch up and feel normal again.  So hopefully that means more blogging.  Maybe I'll post about that whole mess another day.

Tacos!

I think most parents can understand having a picky eater.  We've all heard the stories (and told the stories) of the kid who only would eat chicken nuggets or cheez-its or pizza.  Or whatever.  Most kids go through phases like this and we get past them and move on.  A little advice from friends, a chat with the pediatrician, introducing new things, trying new recipes, sooner or later most kids outgrow these issues.

Kids with autism are a little different.  Usually when a kid with autism will only eat 5 things, it literally means 5 things.  Before we started the gluten free (casein free, soy free and yellow corn free), Mr. O literally would only eat pizza (from a pizza place), chicken nuggets (only 2 brands were acceptable), plain chicken and rice and meatballs with plain pasta.  Oh, and occasionally shrimp and crab legs.  That was it for lunch/dinner options.  Breakfast had to be waffles or pancakes.  Not as bad as the girl in his class who would only eat yogurt, but still pretty limited.  Packing lunch for school was a treat - we used to buy a pizza from the place down the street and freeze the slices for him to take to school each day, and they would have to heat it for him.  Super convenient, huh?

I never thought we could do "THE DIET."  My doctor did not encourage it.  I was overwhelmed at the idea of feeding this kid without pasta and pizza.  But we started it and I have been amazed at the changes in him.  For one thing, he has expanded his food options.  Still limited, but he is opening up all the time.  He now eats chicken and rice, shrimp, crabs, meatballs (with rice pasta) - and has added in chili (with beans!), kosher turkey hot dogs on gluten free rolls, rice and beans and most recently tacos!   I'm blogging about this because the tacos made me feel so normal.   I just saw them at Whole Foods one day last week and thought I would try them - I made them, served them and he just sat down and ate them like it was no big deal.  No slow introduction of a new food.  No screams, no tears, no begging.  He just sat down like a normal 10 year old - I said "TACOS" and he said, "Ooooh ... tacos."  And he ate four of them.  FOUR.

Feeling normal is not something that comes easily around here.  I'm kind of basking in the taco afterglow.  If you happen to see these Garden of Eatin taco shells at Whole Foods (and if your allergy kid can tolerate blue corn) - give them a try.  My other kids liked them too. 

Magic Donuts

Since we started Mr. O. on his  dietary changes almost a year ago, I have been dreaming of donuts.  But coming up with something gluten free, casein free, soy free, dairy free and without dyes and refined sugar ... ummm .. I was not feeling confident.  Even before we gave up the gluten, soy, corn and dairy, I had a hard time getting donuts right.   But there is something about fall that makes a person want a donut..  Apple cider donuts, pumpkin donuts, spice donuts ... a hot cup of coffee, bliss. 

Yesterday we reached the point where the craving overcame the fear.  Mr. O. started asking for donuts - specifically "Punchin Donuts" and then it changed to "Magic Donuts."  I am guessing "Punchin Donuts" is how he hears "Dunkin Donuts."  I still don't know where "Magic Donuts" came from, but I figured I would give it a try.  My boy wanted magic donuts, I was going to make him some!

So - here are the magic donuts, with links to the ingredients as found on Amazon - you can also buy most of these items at Whole Foods if you don't want to buy in bulk.

I started with this recipe that I found online and made some changes, doubled it and tweaked a few things because of our food issues.  Here's my adjusted list of ingredients for baked pumpkin donuts - these are gluten free, casein free, soy free, corn free and free of dyes and refined sugar:

1 1/2 cups Rice Flour

12 TBS Tapioca Flour

4 TBS Tapioca Starch

1 tsp Xantham Gum

1 tsp Baking Soda

1 tsp Cream of Tartar

1 tsp Salt

1/2 tsp Nutmeg

1/2 tsp Allspice

2 tsp Cinnamon

4 eggs

2 cups of organic Sucanat (sugar)

1 cup Canned Pumpkin Puree

1 tsp.  Vanilla Extract

1/2 cup Applesauce

1/2 cup Canola Oil

Preheat the oven to 350 - grease a non-stick mini donut pan.  I could not find a donut pan on short notice, so we used this fluted cake pan and it was fine.  You can also use muffin pans, but then you won't have that fun hole in the middle.  Isn't that what donuts are all about? 

In a medium bowl, combine rice flour, tapioca flour, tapioca starch, xantham gum, baking soda, cream of tartar, salt and spices.  In a large bowl, mix together the eggs, sugar, pumpkin, vanilla, applesauce and oil until combined.  I used my mixer.  Then add dry ingredients and stir until blended.

Fill each donut cup about 3/4 full - don't over fill.  I saw on another blog that they recommended piping the mix into the baking cups so I tried it - not sure if it was necessary, but it didn't hurt.  I just put the batter into a big zipper bag, cut a hole and started making the donuts.

Bake about 10-12 minutes, until tester comes out clean.  Let cool a few minutes before removing.  (I didn't, but you can, maybe you are more patient than I am.)

For the glaze, I used coconut milk (I found it at Shop Rite, they also have it at Trader Joe's) and some finely ground Sucanat (I just put it into the coffee grinder until the consistency was similar to powdered sugar) - Mixed them together until it was sweet enough for me and then added a little bit of rice flour to thicken it up.  I dipped each donut in the glaze and then I dipped some of them into Sucanat and Cinnamon mixed in a bowl.

They looked and smelled fabulous!

And got a big thumbs up from my taste tester.  The "regular" kids liked them too, which is always a miracle.  They are, indeed, magic donuts!