What to do when you hear the "A"-word

There is no other feeling in the world that strikes your heart when you first hear the "A"-word and your child's name in the same sentence. The stab in the heart is quickly followed by denial, fear, anger, hopelessness. I know many many moms who went thru the same thing and we're all at different stages. I remember thinking, "I wish it was 2 years from now"...because I knew it would get better and it does. Lots of parents have to wait MONTHS before they get the official word. That, to me, is the perfect form of torture. For those who wonder "What do I do while I wait?" I have these suggestions:
Read Dr. Bock's book: http://www.4ahealing.com/

Read The Autism Source Book by Exkorn

Read Let Me Hear Your Voice by Catherine Maurice

Visit this message board: http://boards.babycenter.com/n/pfx/forum.aspx?webtag=bcus1143871

Visit www.tacanow.com

Reading and researching does not sound like much BUT you are "arming" yourself with valuable information that you will not have time to get once a DX is given (if given). Use the next few months wisely and try not to feel too urgent...you will be good and ready in plenty of time.

While you're doing that get an appt. with a DAN! (Defeat Autism Now!) doctor...
find at http://www.autism.com/ - this is a biomedical approach.

I started biomedical intervention (a tiny bit at a time) 3 years after Lili was DX'd. I'm one to focus heavily on one thing at a time to make sure I know what form of therapy is working. If you do too many interventions all at once you won't know which your child is responding to!

Kyle is a Challenge!...I mean IN Challenge!;-)

Kyle got a letter from the school district inviting him to be in the "Challenge" program at his school next year! Back in November all 2nd graders took the CoGAT and ITBS tests, and the results have come in and those who scored 93rd-94th %-ile or above get into the pogram. It's a pullout enrichment program for about 2 hours a week. Kyle should enjoy that! Anyway, I do not know what his scores are....they sent out the letters before we parents got the scores. Weird. I should find out Friday, I think. Will let you know what they were!

Joint Attention!

One of the major problems with kids who have ASD is joint attention (or the lack thereof). When a child points to a plane in the sky and looks at you and says, "plane!!!" (as Jack does), he is sharing his joint attention with you (directing your attention to the object that has his attention). Lili does look at whatever YOU point to, but does not reciprocate. We're working on that in her ABA program. The point: Tonight I was on the computer and her daddy called her upstairs. I was vaguely aware of his calling her and her heading up the stairs (but not giving it much attention). I hear "bye bye" (but it didn't register) then I hear, "mommy!" and I look back and she was standing there looking at me and she said (again) "bye bye". *gasp* She called to me! Now, mind you she calls me Mommy all the time...but to call my name to get my attention is new! The dilemma is: what form of therapy can we give credit to for this emerging milestone? MB-12 shots, anyone? These are shots with methylin/B12 vitamins in it that seem to help some ASD kids with their verbal skills (among a few other things). You are either a responder or not. She has had these shots for 6 weeks now. We have not seen a 180 change, but there are subtle but very important improvements. Is it the shots or is it the ABA she is getting? Its hard when you've got a few things going on at the same time and don't know which is working the most.
We're continuing the MB-12 shots for now...there is a protocol devised by a Dr. Neubrander in New Jersey that our DAN! (Defeat Autism Now!) doctor is having us follow. He has a website...but I'm not sure what it is. Google Neubrander and it'll come up. Lili does not like getting these shot (we do it on her little bottom). She gets a numbing cream and the needle is the shortest thinnest little needly I've ever seen. But she still cries. I hate to make her cry.:-/ Nothing a little hugging and kissing can't fix, though.

Lili is on What Kind of World Do You Want?!!

Lili's video has been put on the whatkindofworldoyouwant.com website!:-D I'm so excited. She watched it with me yesterday and had the prettiest smile on her face.

Please view her video by clicking under Favorite Links in the left sidebar ("Lili's Story whatkindofworld...version")

or
copy & paste:
http://www.whatkindofworlddoyouwant.com/videos/view/id/637891

The site will make a charitable donation to Autism Speaks. Thanks for viewing!

Getting a lot of hits!

Lili's Autism Story on youtube.com has 365 hits! I really hope people keep forwarding it on - to get the message out that ABA (or any kind of autism treatment therapy) works! Also that if the good people of South Carolina can get a mandate passed then so can other states! Really, though, we could use a federal mandate similar to South Carolina's (one with less loopholes, though). Lili's dad works for an international company and I'm always fearful that they'll ask us to move.

The South Carolina mandate is not perfect. It excludes small business owners for instance. They (and the uninsured, & others not covered by the mandate) could use the medicaid waiver, however, and get 3 years of autism treatment therapy (up to $50,000 per year). The SC governor is trying to cut out that newly minted medicaid program because he says we have a mandate now! He just doesn't get it!! His heart is "three sized too small".

Brought a Bikini!

For Lili, not me!LOL I can't wait for her to wear it because she has never worn a two piece swimsuit due to her g-tube. If all goes well at her weight check on Feb. 5th we'll schedule her g-tube removal surgery in March. She'll need it sutured shut since she's had it so long. I think about when she first got it. The doctor who put it in said that she could probably have it out in 6 months. That was 5 1/2 years ago!
I think little girls in bikinis are so cute. I picked out a rather pricey one from Chez Ami (so unlike me). It is coral, pale blue, and white. I will post a picture of her wearing it this summer!

Sucking thru a straw

Lili has finally met a major milestone, ....a hurdle that took her 5 years to overcome and the source of years of blood, sweat, & tears: she can suck thru a straw! Such a simple, mundane task, yet she just could not do it. I give credit not only to Lili, but to all of her wonderful ABA therapists, her speech therapists, the U. of Virginia Encouragement Feeding program, and to the wonderful Sara Rosenfeld-Johnson and her TalkTools protocol. Lili could not have done it without them. I ran out this morning and brought Sesame Street cups with straws!

Video

Everyone - I've gone Hollywood! Just kidding...but I did make my first video! Check it out under Favorite Links "Lili's Autism Story" (a youtube site).
Kath

Cold Rain

It is a cold rainy day and according to Kyle only 130 days left until hurricane season begins! Kyle is a weather freak and it's not a passing phase either - he's been at it for 3 years ever since my parents showed him The Weather Channel. Anyway, only 8 degrees cooler and we'd be in for some more snow. The kids enjoyed a day off last week and frolicked in the wet snow (Lili chose to stay warm and dry inside, thank you).
Kyle got his 2nd report card: Language Arts 100; Math 100; Science 99; Social Studies 99; Reading 98. Not much room for improvement!
I'm considering signing up with an organization that wants to train parent advocates for newly diagnosed parents in the ASD world. I would gain even more knowledge that not only will help Lili but others as well. I've always wondered what my calling is suppose to be. Maybe this is it?
I recently met one of the women who authored & spearheaded the autism bill that mandated insurance pay for autism therapy. As of this date SC has THE most comprehensive insurance mandate law - thanks to her and two other ladies. Anyway, this lady, her name is Marcella Riddley, just made a great impression on me. I thought, "I'd like to be like her". I doubt I'll be as powerful as her (she is in the know with MANY politicians including our awful governor)...but maybe I can possess the knowledge that she does and one day give hope to other devastated parents. The help out there for parents of newly diagnosed children is three hundred percent better than even 3 years ago when Lili was diagnosed.

What Kind of World Do You Want?

Five for Fighting has a great song and video out on their website. Everytime you view it they give 40 cents to ASD research & funding. They've raised over $150,000. The little girl (Claudia) reminds me of Lili with her curly hair. She appears about 2 years younger than Lili. That video resonates with me...the words ("The daughter I've always wanted..."..."her most pronouced signs of autism is her silence"). While Lili is still a "woman of few words" I am proud to say she is saying more and more everyday, including "please" and "thank you". I'll never forget the silence though. I'm so glad I don't hear that deafening silence anymore. Click on the link in the sidebar and see the video - contribute 40 cents while you are at it!

I hate winter!!

Every winter its the same ol' thing. Colds, sinus infections, coughing, sneezing, yuck yuck yuck! The whole family has been practically quarantined since early December fighting off this horrible cold that just won't go away. Why can't other sick people do the same? Lili just got back today from her 2nd doc appt in a week. She was on the antibiotic Omnicef all of last week for an ear infection (also fighting a bad cold). Took her back in today with no improvment (and worries about her extreme lack of appetite) and lo & behold she's got a DOUBLE ear infection! What was that antibiotic? A placebo?!?! Jack had the same antibiotic in December and his ear infection cleared up only to get another one in his other ear during the course of the medicine. *grumble* Another antibiotic round (Zithromax) knocked it right out for him. Lili is on Augmentin now. Now there are two antibiotics that act as a placebo for my kiddos: amoxicillin & omnicef. Stay away from both!! Please pray that Lili gets her appetite back. She was doing so well and is only a month away from her weight check that will "OK" her g-tube removal. They won't be so willing to remove her g-tube if she loses weight. I was hoping to pick up her first bikini for this summer once they took the thing out.

ASD

I visit an internet board for people who love "Children with Autism Spectrum Disorder". I post on it often. Sometimes I go a few weeks without saying anything. It was a very helpful board in the early days of learning Lili has ASD. I find now with Lili being "older" (we're approaching 3 years of being officially diagnosed) that I'm one of the "senior members" so I know more answers than I do questions. I do not see many members with ASD kiddos much older than Lili (most of them are 2,3,4 years old) so I think in time I'll fade away from that site. But anyone who has any questions, concerns, ideas regarding ASD would greatly benefit from this board (lurking OR posting). It is a very spirited bunch of ladies (a few dads) with a wealth of info you cannot find most places. If they don't know the answer they'll be sure to find it for you. I put it in my Favorite Links sidebar.

There are no words to describe what it is like to have an ASD child. It makes you love 'em more, it makes you want to be a better parent, it makes you work harder than you ever have in your life....it also makes you want to sacrifice yourself for them (be willing to make a deal, even with the devil), makes you wonder what you did wrong, and ask "why, why, why?" over and over. It is unfair that I cannot take Lili's burden away when I would do anything to be able to.
Kath

Salsa

I adore two kinds of dips: salsa & hummus. My most favorite salsa is Jack's Special Salsa (mild)...no, not because my kid's name is Jack! I put the link to it in my Favorite Links sidebar to the left of this page. It makes those jarred salsas by tostitoes (and the like) taste NASTY. Try and find it - I get it in the deli section of my store in a refridgerated foods section...you'll thank me! I have not tried their hummus yet (can't find it here but I'm looking) so any ol' hummus will do for me now. My Jack does like salsa...Lili "tolerates" it and Kyle doesn't like salsa. He's not a dip (or dressing or sauce) boy. I always thought it was funny how kid magazines and books would encourage parents to give their kids foods they can dip (and have fun) to encourage better eating. Kyle could care less about dips. Jack is one to respond to dipping though. He wants ketchup on everything. "Keshup!" is one of his few words you can clearly understand (in addition to "NO!").

Mark & I

This is the picture of Mark and I in the sidebar of my blog page. I blew it up here in this post. We go to Pawleys Island, SC every July with college friends and their kids. There are 6 adults and 9 kids! The picture looks all calm, serene, and lovely doesn't it? Realize that behind the camera are adults chasing kids, kids screaming (well, my Jack was), and all chaos breaking loose.LOL The good thing is that every single kid gets along with each other and we have the best time. The week goes by so fast and we already look forward to the next beachweek in July as soon as we head home. Check out the Pawleys Island Realty link...I highly recommend a beach trip there!

Recipe Links

I'm slowly figuring out my blog page - may change it up several times before I find what I like. It's kind of like interior decorating!

I added links to two recipe websites I visit daily (see the sidebar!). I'll share a few of my faves from the sites from time to time. For now if you click on the allrecipes.com site search "Meatball Lasagna" and you'll see a dinner that we love. Mark thinks it's a perfectly "balanced" lasagna (good man description, dontcha think?). He IS right, though. Not too much sauce or cheese or meat...really really good. Make it sometime! If you click on the myrecipes.com link search for "Spinach Calzones with Blue Cheese". We tried this a few nights ago. I'm trying to eat less meat (just don't care for it much). I did add cooked turkey italian sausage to Mark's calzone since he's still a carnivore. It was REALLY good!

Kyle got a kid's cookbook for Xmas so on Saturdays he "makes dinner". Tonight he is making lasagna! I'll let you know how it went.

Kath

Firstborn pic

My firstborn, Kyle, the best firstborn a parent could ever hope for. I don't ever want him to grow up! Sometimes at night I can still hear his chatterbox voice in my head as I fall asleep.;-p

Secondborn

My secondborn and only daughter, Lilian...aka Lili-Belle. She's a heartbreaker, isn't she (she has a boyfriend...don't tell her Daddy)! She has taken us on a humbling journey so far in her little life. My heart tells me that she is going to surprise all of us when she finally gets wherever it is she is going.

Jack

My thirdborn, Jack, at Pawley's Island, SC. We still can't figure out where he got his brilliant blonde hair and amazing blue eyes! Maybe the Fed-Ex guy was blond....or was it the UPS guy?;-p

First Time Blogging!

Welcome! This is my first "BLOG", a strange word in my opinion, and I hope to keep up with it in the weeks (months? years?) to come. It's suppose to be a journal or diary of some sort, a great way to let the whole world know how weird I really am! The one thing that convinced me to do this is that I read it is a great way for family and friends to stay connected. I like to keep my friends & family close by, but face it we all are busy-bodies. All of today's "conveniences" really make life more hectic than ever, dontcha think? Anyhoo, I can "BLOG" and you can read my "BLOG" whenever it's convenient and that way we're in touch without taking up too much time!LOL Some days I'll just put in a short blurb and on other days I'll probably write a Harry Potter-sized novel. I just hope I do a good job. Wish me luck! Kath