Funding issues in autism aren’t fun. Actually, they just plain stink. Here is a light (yet oh so serious) approach to the frustrating process parents often go through as they explore new and emerging treatments such as RDI that hold so much promise. This poem was written recently by my colleague and fellow RDI Certified Consultant Jackie Zaldua. Enjoy!

Please Fund My RDI

I do not like this Rdi
I do not like, u ask me why
I have to say , I will not pay
Unless u say it’s aba
Not abc or xyz
It’s aba u have to see
It has been studied thru the years
With Rdi I have my fears
U say it helps improve the clients
How can I know without the science
U say it helps ur fam-il-ies
But still I say I feel un-ease
Help me to see how it can work
Before the money I will fork
I want to see the measurements
Of all ur so called improv-a-ments

You say research will soon come out, Until that time I won’t pay out

U say” look at my videos
It’s not a paper, yes I know”
Ok I’ll take the bait, but wait
Oh my, oh my what’s this I see
On the screen this fam-i-lee
They seem engaged, no more enraged
They share, they care, they move together
They plan to manage stormy weather
Their stress is down, connections up
I’m starting to feel like such a schlup
I think this screen has made me think
And now I see the missing link
I think I finally see the light
How Rdi can change the the life
Not 1, not 2, not 3 or 4
But countless, countless more and more
Fam-i-lies like u and me
Making lasting mem-o-ries
Oh now I feel like such a heel
Because I would not make the deal
I take it back, you will not lack
I think that u will now feel better
I have to say I like the letter
The letters R and D and I
I’ll fly the sky to get the funds
So u can do what has been done
Relationships it’s all about
Development u will round out
Intervention now u will supply
I think it’s great this RDI!

By: Jackie Zaldua

This month was the first month for us to designate a “Family of the Month” at KidsAhead. Well, we chose the family (not hard to do as we have many), made a great poster that is hanging in our front waiting area in our old blue Victorian building, and featured them in our Newsletter. But, it has been bugging me over the last week that we are closing in on March and I haven’t really expressed the essence of Jason and his family to others…more to come about Jason and his family…check back soon…

So I put up the picture I labelled “Baby Smiles” to the left of my daughter Ellie at the same time I wrote the last post about the article I read on research on infants. This picture of Ellie brings me back to those days of baby smiles that were such a gift to me as a parent. Of course those baby smiles (of all 4 of my kids) were just plain stinkin adorable. But so much more was going in during those times of baby smiles. Something was happening, something was growing, something was evolving. Not just my child’s growth and own personal development but also in the relationship that was forming between me and my child. Something big. Something so subtle but so essential. A feedback system. A loop. A continuous circle between me (“Mommy”) and my baby. Yes, this process included baby smiles. It also included glances, gazes, frowns, reassuring looks, soothing tones, moving together, rocking together. A feedback system. Mom and baby. Dad and baby. Everyone and baby. A feedback system that served to stimulate pathways in that baby’s brain that they needed to grow, develop, and connect with others, with themselves, and the world.

So, baby smiles aren’t just baby smiles are they? But…they are just stinkin adorable, aren’t they?

Today, my husband Steve sent me a link to a NYTimes article about how scientists at The University of California are looking at young babies for early signs of autism. Here is the link – take a look but return here please to read my thoughts…
http://www.nytimes.com/2010/11/02/health/02autism.html?_r=1

The article specifically talks about one family whose younger son (I think he is about 7 months) is being watched and observed. His older brother is already diagnosed with autism. Overall, it’s a good article with decent information. I love to hear that babies are being looked at and observed at younger and younger ages. The article has a developmental emphasis as it talks about what babies typically do at certain ages. I was impressed with the focus that was placed on the baby’s motivation (or lack of) to interact and connect with a parent during simple play. I was enjoying the article up until it brought up “eye contact”. I just cannot get past that term. It just doesn’t sound like something, to me (and I know I’m kind of crazy when it comes to this stuff), that should be in the same sentence when talking about a baby. Does a baby “give” eye contact”? Is it a choice? Does the baby decide “I’m going to look at Daddy now” and then do it? Is that the depth of our understanding of how babies relate, connect, observe, and interact with their parents? For me, the article had such promise…it’s talking about babies, it’s talking about autism, it’s talking about finding signs earlier and earlier so that, perhaps, autism can somehow be met head on by parents (yeah for parents!!) and professionals. It’s talking about heading off autism or the degree of autism in some cases. That’s great stuff. I love it.

But…

It was apparent to me that the dad in the article was having to (almost literally) do backflips to gain his infant son’s attention. The baby did not “give” eye contact as the dad made several attempts to engage the baby (this is the 7 month old boy I mentioned earlier.) It wasn’t until after many attempts by the dad that the baby looked and appeared engaged with the dad as the dad took at toy and let it fall off his head with sound effects. The baby looked and responded to this action by the dad. Entertainment yes, true engagement, I do not know about that. This dad is working so darn hard to get his son’s attention that he is no doubt pulling all the rabbits out of the hat…all the while raising his own heart rate, searching for anything to pull his son in. He ends up using a toy that is actually (probably) a huge obstacle (that is what we RDI consultants often call toys, objects, etc that pull a child’s attention away from their parents’ faces). The dad is praised by the researcher observing the intereaction for using the toy to gain the baby’s attention. Now, I am not criticizing the researcher, nor, especially, the dad in this article. The dad is working hard…he’s breaking a sweat…he’s enteratining that baby. God love him. I am sure he would do handstands if he thought it would help his son. He deserves more. He deserves a field that understands his children better (remember, this dad also has the older child that is already diagnosed). He deserves a field that understands how, when, and where development occurs and that when things go awry (like in autism), how to provide opportunities for babies, toddlers, and children to go through experiences with their parents at a slower, more deliberate pace. Not at a frenzied, shake-this-toy and hold-it-on-your forehead til he “gives you eye contact” pace. That is what this dad deserves. And this baby too.

I am just so ready for the field of autism to move forward. To move toward a better understanding of how babies learn to be social partners, first with their parents (most importantly) and then with their peers. I am ready for researchers and pediatricians to understand that “eye contact” is not something babies (or children for that matter) can choose to “give” or not give. I am ready for researchers and pediatricians and other expertst o know how to coach parents on simplifying their interactions with babies who are deemed at risk for autism (like this little baby in the article). To be able to coach parents on how to slow down their interactions (not speed up) and simplify them (not complicate them with toys and other objects). I am ready. But I’m wondering, is anyone else?

Good night everyone. Keep it simple.
-Libby

So, I never finished my all important observations about our Girls Just Want to Have Slumber Party. And, since then, we’ve had or first ever Boys’ Rockin’ Sleepover. I have thought and thought about these two nights a lot since they actually happened. People may wonder why I would spend so much time contemplating half sleepover parties. Really nothing big…just another fir day night activity for preteens, right? Well,as any parent of a child with autism or other disorder that impacts social and cognitive development can tell you, a half sleepover really is a big stinking deal. It’s a time to take off the armor that we put on each and every day so we can face the world and just put on our most comfy jammies and slippers. Forget the world. Forget, especially, the world of goals and objectives, the world of IEP’s and meetings. Forget the world of “should have’s” and “have to do’s”. Forget the world of can or can’t. Sleepover parties are about being ourselves and sharing ourselves with our peers. Not an easy thing to do for a child (let alone a teen or preteen) with autism.

Hanging together at our Boys' Sleepover

I’m not sure if you would agree, but, in some ways, a half sleepover party sounds, on the surface, to be almost the opposite of how we might think a child / teen would want to spend their Friday night after a long week at school. They may just want to chill and stay home. They’ve had a lot of demands all week. They need to decompress and do their own thing. Well,
we were very fortunate to have the privilege to find out at our Girls and then Boys’ sleepover parties that this was not the case. We had eager kids show up on our doorstep with sleeping bags and pillows in tow. Excited to do everything we had planned. Nothing fancy. Just regular
sleepover stuff…but, stuff they probably hadn’t had the chance to ever do before. At least not like this. At least not out of the watchful gaze of their parents, their teachers, their
therapists, their “team”.

Manicures, pedicures, eyeshadow, bracelets, pillowcase decorating…the girls took the girl stuff to an all new level. There were even squabbles amongst the preteen girls as would be expected at any sleepover (“she’s touching my stuff! Move over!”). The boys got a bit rowdy as they ran around in the dark opting not to turn their flashlights on! The girls accomplished a lot of crafts – cupcake decorating, pillowcases, frames, jewelry, etc. It was kind apparent early on that that was not the boys’ thing…they were looking to move and groove. Thank goodness we had Rock Band on the xbox up and running by the time they got there! I was struck by the gender differences I saw in the two nights. Boys were boys. And, man, were the girls girls! Even as a professional in this field for over 17 years, I was blown away with how much these kids were just being girls and just being boys.

Sometimes it takes something as simple as a sleepover (or even just a 3 hour sleepover like a “3 hour tour”) to bring this into our vision. Simple is good. Even in the world of autism. And, sometimes especially in the world of autism.

Happy Halloween everyone. Keep it simple.
-Libby

Hi everyone,

I know I promised to wrap up the 9 and 1/2 Cinderellas story and I really will. I am headed to Houston, TX tomorrow for the Annual Conference for RDI Consultants. I have been to several of these but it’s been a couple of years so it will be good to touch base with old faces and meet some new ones. All I can tell you about our Cinderellas is that, yes, they all made it to the ball that night at our slumber party. No one turned into a pumpkin. We lost one flashlight and one sleeping bag cover. Not too bad for a bunch of girls. Now, the Barbie Head didn’t fare so well – she was adored by many that night and we just had to take a picture of her at the end of the night, she looked so tired with her purple nail polish and smudged face full of makeup.

But, yes, we all made it to the ball that night. Even me. Mostly me.

Here is a wonderful recipe that I know you would just love. I am not sure if you want to try it at home but if you are brave enough, strong enough, and have enough nail polish, you may want to give it a whirl. Ok, here are the ingredients:

• Nail Polish (and remover just in case) and the usual cotton balls, Q-tips, and tissues.
• Lip Gloss (and, again, plenty of Q-tips so you don’t have to share)
• Pony tail holders
• Un-iced Cupcakes..l
• Pastry bags full (really full) of pink icing
• Sprinkles (any color but we like yellow)
• Beads and Fishing Line (it doesn’t really matter if it breaks)
• Plenty of Flashlights
• KidBops music Cd’s (doesn’t matter if you don’t know any of the songs on the cd)
• The Hannah Montana Movie (we used the first one but any which one will do)
• Popcorn Popper and real popcorn kernels (no microwave bags allowed)

Oh, don’t forget the kids – 9 and 1/2 girls (start with 10 and one may leave early for reasons out of her control) with special needs including but not limited to autism spectrum disorder, ADHD, cerebral palsy, and Down’s Syndrome.

Optional: balloons, other crafts, any snacks, juice, water, and parents if they really, really want to stay

Never, ever mix in: Boys

Directions:
So, on a very recent Friday night, we (when I say “we” I mean me, Michelle, Tina, Rebecca, Deb, Liz, Melanie, Patrick, and everyone at KidsAhead Consulting and Center for Development) worked pretty furiously to get goodies and girly stuff ready to go. A beauty station (with a hand-me-down Barbie head with a head of already matted hair but we just smoothed it out and wished Barbie good luck). A cupcake station (how lucky were we to get some yummy “minnies” and all the fixings donated to us for our night). A pillow case decorating station. A bead station. A popcorn popping station. A pretty much empty room with a small boom box, small jogging trampoline, bouncy balls, and bunch of beanbag chairs. We moved our couch in our waiting room and made room in front of our TV for lots of sleeping bags. We put on our pajamas. We waited. Well, not really because we are always cutting it close because there’s always one more thing to do. Anyway, we waited but only for maybe a minute and then they started to arrive.

Slowly and then quickly, they started to arrive. Pj wearing, slipper holding, smiling, nervous, chatting, excited. They arrived on the doorstep of the old blue Victorian house that is our KidsAhead “home”. 6:30pm. 10 girls with special needs. More than 10 parents holding sleeping bags and asking “Where do you want this?” as we greeted them at the door. Excited, chatting, nervous parents. Slowly, the parents left. Well, a couple stayed (so glad they did). The girls acclimated. Some of them recognized each other from town (school, camps, etc). They explored the stations we had set up with so much planning (“oh no, they’re touching the stuff already…we have to do this in a structured way” were the thoughts running through my head). They explored our goodies waiting for them. They surveyed and they watched. They watched us. They watched each other. We had 10 Cinderellas, all in pj’s, just waiting to go to the ball. I was hoping (I was praying) we could take them there.

It was what I now think of as “A Magical Little Night”.

I have to end now because I need to shift to my own kids (4 of them, all great, all needy). I will write more later. I guess that’s the beauty of blogging, right?? I hope I painted a picture for you. I will wrap it up next time.