Wahoo!

I am so VERY excited to share with my bloggy friends the news that Cay has been accepted into a study called, the "Nutritional and Dietary Treatment Study for Children and Adults with Autism," which is sponsored by Arizona State University. 

I had to push a bit for Cay to get accepted (the squeaky mouse gets the cheese, right!?), and then Cay had to "prove" his autism through the ADOS assessment. Let's just say his autism was "proven".. and it's still just as classified at his current level as he was back when he first regressed. I didn't even have to show him our huge stash of files (it's a file-bin purse) collection to them! As in, none of his prior levels mattered. Bitter sweet, ya'll. Am I the only one who goes to sleep dreaming that maybe their kiddo is progressing so much that the "autism" label won't apply anymore? I know, I know. Coming straight out of the mouth of a special education teacher. But... I'm honest, right??!  He does still qualify into the label as "Autistic," even if I do think he is rockin' in his progress. Hmmph...

Awesome Sign from the place that did his assessments! :)

Anywho...

We are accepted. I am THRILLED. I prayed hard about it.. whether it was the right thing to put Cay into (I so do NOT want him to be a guinea pig) and then for us to be accepted if it is God's will. Apparently, it is!  :D

It consists of studying the affect of vitamins, minerals, essential fatty acids, carnitine, digestive enzymes, magnesium sulfate, and the GFCFSF diet. Everything but the food is free! We went to a lengthy meeting (where Caydon told everyone he was make "nesting grounds for [his] cretaceous period dinosaurs,") and came home with a huge copy of the power points.

This is the "jist" of it::

The purpose of this test is to give the DAN! doctors and those of us who believe in Biomedical Treatments for autism a leg up when we approach insurance companies and state legislators. I'm very intrigued!!

So, stay tuned. I am full of anticipation as to what can be a result of this study for Cay. Possibly huge progress, and possibly a little. Either way, regressions are rare... I'm definitely not complaining.

This weekend, I wake Cay up for midnight pee in a bag twice, and syringe it into little tubes (gross), he starts a heavy vitamin supplement,  and then I try to comfort Cay through 13 blood vials Saturday morning. Ick. 

My face...

My little man was featured as a "Face of Autism" back in my Modern Mom, Redefined days. Here is the link... it's kind of old, but still holds a special place in my heart :)

For the Love of Hands

Caydon has a lot of teachers. I mean, really, he has six. The joys of special education: he has an emotionally disabled/ "structured behavior" class, integrated classroom, and daycare. I wanted to do something crafty, cute, easy for Cay, and affordable... but not "cheap". My favorite gift as a teacher is one I can actually use, but that's still from the heart. ;)

This is what I came up with:

It was actually rather easy. Start off buying some of Bath and Body Works' little lotion. We chose the newer scents... They smell amazing! 3 for $10. The sweet lady gave me the clear baggies and ribbon. Free! :) Drop each in and tie with little man's "help".

With paint we already had... Acrylic.. We stamped out little man's cute hand onto card stock. Free... Already own! :) Then I cut out the shape.

Using Cay's markers, we came up with corniness using the terms "high five," "hands down," "you deserve a hand," etc. He proudly wrote his name... His newest accomplishment.

With a hole puncher, we tied the hand to the bag, and finished with a bow.

Tada!

Total of about $22. The only expense was the lotion. 

Time spent was about one hour... the paint dried quickly. :)

Cat Lady in Training

Right now I'm feeling like a bitter old hag. I mean, seriously. Can't we just skip tomorrow? Or, can I at least take the day off from work? I have been practicing being excited for the cheesiness my students will surely want to talk about when their boyfriend gives them their carnations and dollar store chocolates. Keh. I told you I'm bitter. Especially since I really should be married about now. I should be having my third... as Caydon so willing tells me. He even asked me frequently if I have a baby in my tummy. Nope!

Patience and contentment are hard! Especially when everyone I hang out with is married with another newborn or one on the way. I really am trying to be excited for them, and not just totally jealous. But seriously, everyone I know is expecting. Just the other week I told my friend, the last one who only has one kiddo, that she better not get pregnant so I'm not the only one having baby fever. Besides, who else can I drink my one margarita... All it takes... with? So, we go to a sushi restaurant where we can eat our raw food and drink our martinis, and she ends up telling me that she couldn't participate upon arrival. Yep, I jinxed it.

Stupid day tomorrow. And even stupider boys.

Cheers to being bitter. And thank you, God, for chocolate. Chocolate wine, that is...

I need to start liking cats.

Snip, without the Buzz

Autism. Haircuts. Nail clippings. Shampooing hair.

Never a good combo. 

Well, at least not until lately.

Today, I successfully gave Cay a tear-free haircut! Oh, yes, this mommy did!!

I recently discovered that he is afraid of certain noises, touch, and what he isn't familiar with. Surprising for a kiddo that has sensory processing disorder? (SPD- something most kids with autism have that basically means that their senses are hyper and difficult to process.)  Not so much.

The first big feat we had were his nails.. as mentioned in my blog before this. I let his nails grow out into claws. Seriously. Claws. They were disgusting. He looked like some poor neglected child that CPS was waiting to take away. Too bad he is the OPPOSITE of neglected. Anyways, I gave him a break from nail clippings so that he would "forget" about the fear... while, in the meantime, clipping my own non-stop around him with a smile on  my face. This is how I first convinced him to give clipping the nails, without screaming in fear, a shot. When it comes time to do his own, I give him a tight secure hug (he's sitting on my lap) and he has one hand on my hand (the one holding the clippers) and the other hand is where I'm holding one of his fingers. I tell him he's "helping" me get his nails shorter. Once we get through a few nails, it's sticker and phone time! I then do a few more nails the next day, and the next, and then the next. Ideally, this makes it a consistently scare-free event, and I reinforce it with lots of praise after (including a sticker/phone time). 

As for the shampoo part, after months of only dry-shampooing his hair (yuck) and months of swimming lessons, he now tries to do his own hair. The bad news is that his hair looks greasy because he doesn't quite wash out the bubbles. The good news? We don't have to fight for it, his hair isn't as nasty/flaky as it was when we were in our dry-shampoo phase, and his hair smells edible. Mmmmm.

 Now, we just need to work on my scissor skills. But, at least we've taken care of the hardest part..

aTypical Parenting

I've come to realize that parenting a kiddo with autism is as atypical as the kiddo himself. Err, what I mean is this. As a parent, I have different expectations for my boy. I don't mind Little Man walking around with crap on his face (I'll try to get it off, eventually... you know, once he is calm and I don't think my scrubbing his face will make him freak out). How many NT (NT= Neurotypical aka "normal kiddos") parents allow this? I know I always SWORE I wouldn't allow my child to do this or that. But here I am, encouraging a lot of what I was always adamantly against. So for "fun".. in my atypical parenting manner... I'm making a list about what my atypical child is allowed to do, even thought the NTs aren't so much. Add on if you'd like :)

1. Little Man can get as dirty as he pleases. And, as previously stated, I'm not going to jump the gun and scrub his face unless the moment is perfect. It's so not worth causing a meltdown. Everyone who sees his grubbiness can get over it.

2. Little Man often has claws. Seriously. Claws. He used to scream in complete fear when I tried to clip his nails. I just recently got him to sometimes be alright with me clipping them. This is such a big deal that the first time I cut them without a fight he immediately received tons of praise, including this here sticker.

3. We still rarely wash his hair. In all reality, Little Man used to NEVER let me touch his head. He hated water near his eyes, which led to his OT (OT=Occupational Therapist) telling me to not sweat it. OT said, "Dry Shampoo once a week, ignore the other days. If he's up for it, gradually try getting his head wet. Eventually, add wet shampoo. Make it a process, and one that doesn't freak him out. Help him learn that water near his ears and eyes is alright."  Noted, Mr. OT. Actually, still noted. Little Man is now a fish, and I still only force him to wash his hair every third night. He'll live.


4. Speaking of hair... the boy goes from a buzz cut to ringlets on purpose. He hates getting his hair cut (hates is an understatement) so he gets to go long and shaggy. So glad it's kind of "in".

5.Little Man is allowed to have backwards or inside out clothes day. If he actually tries to help me get him dressed (normally he's a limp log and I just get him dressed... or he's fighting it) and he happens to put it on wrong, then CHEERS! I'm thrilled he made the effort. I don't care if he does it wrong. I hear NT parents talking about how their kids have to look all prim and proper, and I seriously want to scream, "You have no idea how lucky you are that your child can do that by themselves! Be proud, not perfect!" The other day he had his shirt, underwear, and pants ALL on backwards. This is how he tried to put it on... and I wasn't going to fight it. Actually, I was thrilled.


6. THE finger is ignored. Little Man points with his middle finger, and writes with it sticking straight up. He also does that thing where he crunches his fingers up when stemming, and there is his middle finger, sticking straight up. He seriously doesn't get it from me.

7. Little Man is allowed to talk as loudly or as often as he wants... and I really, truly, seriously try hard to not be the parent that thinks/says, "If he would only have a mute button," etc. Little Man was a super late talker, and with his autism, I've seen him regress hardcore in speech. So talk away, Little Man. Talk as loudly, obnoxiously, crazily, non-stop as you want. No mute buttons, here.

8. Little Man can be as touchy feely as he wants. I'm blessed with a child on the spectrum who doesn't know how to keep his hands off of people and things. He is a cuddle bug, and doesn't understand personal boundaries. He will never, ever, be kicked out of my bed because I know how lucky I am that he embraces my hugs. Some people get mad that Cay is rubbing their arm. Me? I'm just thrilled that he isn't biting, kicking, hitting, spitting, or sticking his hand down your shirt (the boy is a booob man. blame it on breastfeeding, but he is! Not for anything but comfort, either).  I'm more than happy to tell someone who points out their having a problem with my touchy-feely boy this very information... including the boob part. Because, seriously, get over yourself stranger that doesn't like kids.

9. Different priorities are welcomed. I recently signed him up for baseball. I figured, sure, it's not going to be easy, however, it will introduce some really fundamental ideas to him. Patience, taking turns, learning how to self-regulate, etc.  The boy spends 60% of the time with his hands in the dirt. The other 35% of the time, he is hitting his glove saying, "hey, batter, batter, batter" over-and-over-and-over-and-over-and-over again. The other 5% is saved for when he is eating dirt, licking the fence, or mouthing the bat. Clearly, we're pushing for the 35% category. I'll take repetition any day. Might I add that his being on the team is creating a great amount of Autism Awareness?? =P

10. Dinosaurs are where it's at. I actually have defended Little Man's IQ with his amazing dinosaur skills. Sure, he doesn't know his ABC's, he can't count very high, he can only sing you his name, he repeats the last thing he heard without comprehending it ( =echolalia), and he doesn't spew out academic knowledge like his preschool peers. However, my boy can name so many dinosaurs that the average Joe has to google just to stay caught up. He knows the different time periods, whether this dinosaur was a carnivore, omnivore, or herbivore, and he knows both the evolution and Christian theories as to why they went extinct. Just today we had this conversation (more like a statement from him, but it was directed to me... so it counts as a convo in my world): "mommy, when I grow up I going to be a teacher, too. I going to teach high school, too, but I be a boy teacher. You can teach letters, but I teach about dinosaurs. Is that a good idea, mommy??"   Low IQ, umm.. No. 

11. Little man can jump and twirl and flap all he wants. This includes on his bed if he doesn't find his mini trampoline to fit his needs momementarily. period.


12.We celebrate the little things. He got a pair of shoes in the mail the other day, which become a "New Shoe Party". The first time he tried sushi (he's a temperature-specific kind of guy; textures don't phase him unless it's stringy) we had a "Sushi Chop Success Party".  Seriously, life is a party with Little Man. Maybe I'm in for it when he becomes a teenager. That or I'm just amazingly blessed that this boy has given me the perspective that he himself has... where we can stop and smell the roses, but simultaneously not stress over the rose's thorns.

Hope Instead of Wonder

  

I seriously can't believe it's already 2012. It feels like this year has flown by, even faster than the years prior. I think we always feel this way... and I'll probably always wonder what happened with the time. The day, the week, the month. The year. It all flies by SO quickly. 

This year, Caydon turned 5. Kind of a big point. Half a decade. Where did the time go? I look back, and remember him being a newborn. Being alone with him in the hospital, wondering with fear if I was doing the right thing by signing my name on his birth certificate. Leaving the spot where I had wished I was writing my husband's name blank. Should I be on it? Should his bio-dad? God really guided me through that time, where I had no clue whether or not I should be keeping this baby, or giving him up for adoption.

This memory, and fear, has been weighing on my mind quite a bit this past year. The time. The choices. Do I regret any of it? Absolutely not. But the lack of regretting doesn't make it any easier. It doesn't take away any lost time that I might view as "wasted". His first five years have been hard. Much, much harder than I ever had, or would, hope for my child. Learning about voids that another man, who should be his protector, has created. Suffering through countless doctors appointments, preschool teachers, hospital stays, seizures, pokes, pricks, IV's, and meltdowns. Something his neurological differences.. autism.. has brought him.

I'm over this. I can sit here for hours... days... and write about how screwed up my son's childhood is. How I would change it in a heartbeat. Yet, I can't change it. I can't take back the past. I can't regain the wasted time, and the wondering of where the time went. 

I can, however, change my attitude about the future. I can accept our past "as is" and pray that our future is exactly what he deserves. I can make it a goal to be able to reflect next year at this time, knowing precisely where the year went. So that, when I'm changing the date on my classroom white board, I won't be wondering where the day, or the month, went. 

This is the kind of hope that so fantastic about having a relationship with God. He gives us the hope that we'll have a future. A purposeful future... fulfilling His will and preparing to enter His kingdom. How amazing, and divine, is this kind of hope. It's not one that I can create for Caydon, but I can absolutely share it with him. I can take the "wasted" 5 years, and tell him that his Heavenly Father hasn't abandoned him at birth. That this father hasn't had to be like me, working extra jobs to put food on the table, and hasn't "wasted" special times that could be given to making memories. That the little plastic blue preschool chair waiting by Caydon wasn't left empty because I couldn't get off of work for his school's Christmas party, and he had no one else to invite.  (gah, guilt could kill!)  While I can continue to try to be there for what Caydon needs, this father will always be there for everything, big and small. Both the special and the routine.

This is a perfect hope for the new year, and the years to follow. We are so blessed, even amidst the struggles, the disability, the missed time, the shattered memories, the missing pieces of a family... We have hope, and that's all we really need in the long run.