Autism & Testing 1-2-3…

Originally uploaded by CleverIndie

This is from our local Autism Speaks’ Facebook page:
***Please note that the Care Mobile will also be at the Autism Speaks SWFL Walk Now for Autism on November 7 at Estero Community Park*****

The Children’s Hospital of Southwest Florida, in partnership with the Ronald McDonald House Charities of Southwest Florida, will offer free monthly autism spectrum disorder screening for toddlers 18 months to 36 months of age.

The first screening will be held Nov. 6 from 9:30 a.m. to 2 p.m. in the Ronald McDonald Care Mobile, located in the Cape Coral Hospital parking lot. Additional screenings will be conducted monthly at different locations across Lee County.

It is estimated that one in every 150 children is diagnosed with some form of ASD, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined.

That’s why parents are encouraged to bring their toddlers to the Ronald McDonald Care Mobile for a free screening. Clinicians will use the M-CHAT, with Denver Developmental Screening Tool to assess the toddlers. The screening is not intended to make a definitive ASD diagnosis, but rather to determine whether your child may be at risk and needs further evaluation.

Medical consultants for the project stress that an early diagnosis can make a vast difference for toddlers and their families. They say early intensive behavioral intervention, or EIBI, can make an immense difference not just in the development of the child, but in their families as well.

The ASD screening is conducted by the Neurosciences Center at TCH, under the guidance of pediatric neurologist Jose Colon, MD, MPH, and pediatric psychiatrist Marianne Krouk, DO. The onsite screenings will be administered by an Advanced Registered Nurse Practitioner, who has extensive training and experience in typical child development and developmental disorders.

A physician referral is not required. To schedule a screening, please call 239-985-3608.”

If you have any concerns, I’d make an appointment. For those who think that a pediatrician would have mentioned something during the annual checkup, I wouldn’t put all of my trust in that, though it is getting better. Remember, getting clarification and help for you and your child, is the best thing for your kid and their future, and the earlier, the better.

Just wanted to share….Hope this helps someone…
xo
Bek

Adventures of The Sneaky Chef in the Cave of the Aspie Kid

A couple of months ago I intended to blog on this fabulous book (The Sneaky Chef) we had bought, hoping to increase nutritional value for our whole family, particularly Alex. I mentioned Alex’s food quirks and “rules” a little in my post “Islands in the Stream” and promised to check back in about the book.

Well, here I am. A little older, a little wiser, a lot more cooking under my belt than I typically do. I enjoyed my experiments and the creativity exercised in the kitchen. I really enjoyed that because of my abnormal level of fatigue and pain (yay, isn’t arthritis fun!) Jeff did the dishes and the grocery shopping so I could focus on inoculating tasty and fun foods with extra nutrition to make one of kiddo’s primary personal goals (and one of our goals as his parents) come to fruition.

Alex wants to grow up big and strong and healthy.

And we want him to grow up big and strong and healthy as well. (By big we mean: Not frail)

We have always avoided the concept of “the clean plate club” as in my million plus years of Weight Watchers meetings I had seen and heard of the fallout of such parenting & nutritional methods. And, as someone who has been on a diet since 3 weeks old (yes, you heard me: weeks) and I am still experiencing the fallout from that (I’ll cover that in another entry, at another time. Promise.)

So I am particularly sensitive to not taking the warden approach to nutrition. Our goal for Alex, in all aspects of his life, was to give him the tools to be able to make the best decisions, for himself, in his life. This applies to work, health, his personal life, etc… I do want to thank Early Intervention for asking us the important question of what we want for him and his life. We learned to keep it non-specific enough that we don’t suffocate him with our expectations, but enough that we can build goals. Good and important stuff.

So, we decided to start “Sneaky-cheffing” more nutrition into his regular foods and he even helped me (we both got so messy! he didn’t freak out completely! it was wonderful!) prepare a few recipes.

But guess what we found out? Our experiment reiterated that kiddo will probably never eat a casserole or anything remotely resembling a casserole- even homemade macaroni & cheese with real cheese rather than packet of powdery stuff is too much of a multiple texture experience for him. He’ll eat Annie’s Mac n’ Cheese but not the stuff I spent so much time planning and prepping and cooking. He also won’t eat any whole vegetables other than carrots. Think about it: Carrots are the same consistency all the way through- I can’t think of another vegetable that does that…Maybe peeled and cooked potato chunks-but then there’s a certain graininess, and with sweet potatoes a certain stringiness… Anyway, this goes beyond regular little kid dislikes and pickiness- these textures actually make Alex dry heave (or barf. Depending how deep we are into the meal.)

Some ideas from The Sneaky Chef worked beautifully- the idea of adding extra nutrition everywhere has stuck with me- even as far as adding water to a recipe (or instructions on a box)- I don’t add water (well not every time, I still need to work on the planning thing!) but use a nutritious liquid instead. I learned that blueberry juice doesn’t curdle milk and makes a fun colored alternative to plain white milk (or soy milk…Alex seems to change his preferences every couple of weeks)…

I also learned that we can sneak some of the purees suggested in the book into some foods, without objection.

Then Alex saw the jars. Ok, when I first started using the book I made my own purees. But as backups we had the recommended jars of baby food (not all of the purees are available as baby foods, and the homemade purees and mixes are much cheaper and not difficult to make and freeze).
Alex saw the jars. I took a deep breath. He voiced a little panic about baby food being for babies.

So I asked him (remember, he is deeply logical and literal and rule based. Think Spock to the nth power):
ME:Who eats baby food?
ALEX: Babies
ME: Are you a baby?
ALEX: No. I’m a big guy. BIIIIIIIIIIIIIIIIIIIGGGGGG! (makes war face and flexes and almost knocks himself over)
ME: What do you eat?
ALEX: Big Guy food.
ME: If you eat a cracker is it Big Guy food?
ALEX: Yes.
ME: So if you are not a baby and you eat the stuff in this jar then what is it?
ALEX: I’m not a baby!
ME: That’s right! You are a big guy! SO, if you eat the stuff in this jar & you are not a baby then the food in this jar cannot be baby food! It’s only baby food if a baby is eating it.
If a BIG GUY is eating it, it’s called “PUREE”!
ALEX: I like puree!
ME: YAY!

So, after all of our experiments trying to sneak “puree” into his foods we found out that Alex doesn’t like it mixed in. He likes it plain and separate from his regular food.

Of course, he has to announce, at the start of the meal, “It’s only baby food if a baby is eating it. If I eat it then it’s puree!”. Seriously. He says it every time.

Perhaps, if he adjusts to the taste this way, he’ll be more accepting of various textures eventually. Until then, I’m happy to serve him his vegetables in this manner.

A wise person once said, in regards to parenting, “Pick your battles”.

As he slugs down jars of summer vegetables (a sneaky way of disguising what actual veggies are in there- summer veggies are ok, broccoli & spinach, etc -not so much. Don’t forget, on top of our Adventures with Asperger’s, our Alex is still a kid. Sometimes, I guess that maybe it’s like having twins.) I realize that we both are winning and we can focus on moving forward to bigger and better things. I try to point out that it’s like a bisque, but he corrects me “Puree!”

I still think The Sneaky Chef is totally worth the purchase (Amazon has copies from <$2.00 + shipping to brand new…any which way, I think it's worth it) it was a great jumping off place for figuring out some small ways to enhance nutrition for the whole family.

(We have been getting various supplies through Amazon.com lately- yes, the Prime program is awesome! They do carry Earth's Best in 12 packs and Annie's Mac n' Cheese as a 6 pack- actually, with Prime, it winds up being less expensive than our chain supermarket and they are delivered right to our door. I'll post a link to my amazon store soon, where I'll have all of the things I have mentioned with links, to make things easier for everyone!)

xo
Bek

The best tool in our potty training arsenal…

For years (a little over 4 of them) we struggled with potty training the little guy. Yes, he has some other issues (on top of the drama that is a 4 year old boy at times) which threw a little extra zest into the challenge, but as we had never potty trained another kid this was our normal…

We did, however, amass quite the arsenal of potty paraphernalia during out journey…Most of it addressed specific issues boyo and I were having during the process, but none of them were a perfect solution.

Here were our main issues:

1. boy is blessed with my proportions. He has a long torso and short legs.

2. boy is bigger from front to back than most potties and potty seats

3. boy is fiercely independent when it comes to learning new things. he is also secretive. he will practice something, in private, until he gets it perfect to show us. We think this may be genetic, as we are big on the “do your best” thing rather than the “you have to do my version of your best and I am completely delusional and this will scar you for life” dealio. Anyway, example: he didn’t walk until 22 months (for many reasons) but when he did he just walked. He never stumbled or fell down. He just walked like he had been doing it for a year.

4. With my physical issues (arthritis and early on in his potty training history, projectile vomiting whenever I would move, and a giant tumor, pulsing with hormones, in my neck) emptying and cleaning the little floor potty was necessary, but frustrating and frequently painful and exhausting.

Eventually, we discovered that boy was still dropping a dook in his shorts and telling us, proudly, that he had crapped or wet his pants. Odd. Well, as it turns out, we were encouraging him to, in basic terms, do his business in a container and then we were dumping the goods in the big, flushing toilet and then scrubbing the “container”, he figured he would up our efficiency and just crap directly in his underpants which could then be thrown into the washing machine with some stain treating and rinsing. He decided that this system was much easier and more efficient and he didn’t have to break up his playtime as quickly to get to the “container” to drop the kids off in a timely fashion.

It was at this point that I realized we had taught him that you poop and pee in one place and then you transfer them to, basically, a garbage (that flushes)…

Boyo is very literal. I can see clearly, how our struggle went on for so long… Hindsight is 20/20

So we moved onto the Baby Bjorn potty seat, which was the only seat around that would accommodate all of the necessary little dude gear without him shifting around (and possibly wiggling the seat a bit and scaring the…well, you know… at least he was in the appropriate place for having the poo scared out of him)….

Of course, this meant that every time he had to use the potty he had to locate me, communicate with me regarding his needs (or just do a dramatic pee-pee dance and then flat out deny that he had to pee while a puddle formed around his feet) , and then we both had to venture to the bathroom, where I would lift him (remember the arthritis? Not a good match for lifting my 36lb wiggly kid)… He would then do his business and wash his hands and move on.

I did notice that he was doing better with the potty thing when he started school, but of course everyone had been chanting before he started “when he sees the other kids being big boys and big girls and using the potty he will want to as well”… So I just wrote it off as peer pressure…

One day, my genius child got the stepstool out (we rarely used it as he still couldn’t reach much even with it) and attempted to climb up onto the regular toilet by himself (I just watched and didn’t intervene as he is a “practicer” with everything). Well, a stepstool (made for kids) has a few critical flaws: the one we have (which we love for other uses) has 2 steps…If boy is on step 1 he doesn’t have enough turn-around space and does not have the leg length to just park his butt on the toilet seat… If he is on step 2 he is very high and the drop down to the toilet seat is terrifying… It definitely doesn’t help that the regular kid stepstools do not have a handrail or grip bar of some sort.. Poor kid was so scared at the top of the stool that he just stood there crying softly and shaking a bit… Pants around his ankles and he couldn’t move because his balance, at that time, was still not the greatest… Note: to this day he takes his pants completely off when he has to pee, even in public restrooms… I have a feeling it was this particular incident with the stepstool that triggered that quirk…

Anyway, I toyed with the idea of installing handicap restroom railings in his bathroom. But still the wooden, very cute, and personalized stool wasn’t the right proportion for this purpose…

Then one day… EUREKA!

When I had my spine surgery I found that even just boosting myself a little bit, to get my butt onto the bed, was torture (occasionally, I blacked out and fell over from the pain doing this)… So one of the nurses hooked me up with a metal step stool- with a higher handle on one side and a grippy surface to step on. It was a life saver for me (and later on, at home, my underused reebok step (with risers) replaced it as I had enough strength to step down without the handle)…

So I ordered one for boyo. I got mine off ebay… If you click the image above it will take you to Amazon.com and a stool similar to the one we bought (ours is apparently unavailable on Amazon at this time, it was by “Drive”, the one linked is readily available and looks to be the same or very similar). By the way, if you have a kid(or kids) or are ever planning on interacting with the pee-wee set, you might want to subscribe to parenthacks… Truly awesome stuff…

Anyway- within a week of it’s arrival we made a huge amount of progress- boy was potty trained. Most of all, it taught me, as a parent, that the key to my little guy’s success is letting him take ownership of his tasks. Helping him get to and from the potty solved some of the mess issues, but it was killing my back, and teaching him that he doesn’t have to be responsible for his bodily functions and the state of his underpants. The step stool has given him the freedom and responsibility to handle those things, and to manage his time better as it is up to him to get his butt up on that toilet before it is “too late”…

Some tips if you do get a stool like this for your kids:

Do not let little kids use the adult toilet, unsupervised… (kids can drown in 1-2” of water…) Perhaps in the beginning of using such a stool it would be wise to park it a few feet away from toilet while it is not being actively used… The legs are wide (like a bulldog) apart and rubbergripped and the stool is fairly solid…It is not easy for someone under 3.5 feet tall to move..Use your judgment, of course, you know your kid best.

Do not attempt to wipe down the grippy surface with a disposable cleaning wipe(ie clorox wipe). Cleaning wipe dingle berries will accumulate rapidly. A spritz of spray cleaner and a wipe with a microfiber cleaning cloth works wonders… If the crevices are getting dusty, try a utility/scrub brush after spraying…

And after your dear child finishes potty training and his/her legs grow long and strong enough to not need this very valuable tool, do not dispose (donate or sell) of this… This stepstool is also steady and useful in the kitchen and, as I mentioned previously, after surgery…

I hope this helps at least one parent and one kiddo….

Hugs all around…

B