My thirdborn

Jack is proving to be my most difficult child, behaviorally. He's stubborn to the point of insisting that every color is green, he refuses to answer questions about shapes, and says that cows say "woof" and dogs say, "moo". He won't let me read books to him, he won't let me sing, he won't color with me, nor paint. I can't seem to figure out how to reach this kid...how to play with him on his level and at the same time teach him things. He loves choo choo trains, but when I play that he gets all mad about something I'm doing and wrecks the track apart. He's very helpful (when he wants to be), and certainly thinks he is older than 2. I feel like I'm doing a very poor job parenting him compared to Kyle & Lili. I just don't have the patience anymore and end up walking away from his outbursts after attempting to play with him. I know I need to dredge up my patience and persist somehow...but as of right now I have very little interaction time with him compared with my first two, and that makes me sad. But how do I play with this mean, stubborn, little kid who does not even seem to care about my feelings and/or about pleasing anyone but himself? Don't get me wrong. He is a sweet kid, always smiley, beautiful to boot....very outgoing and high spirited. But he is not easy to get along with. This is the one that will keep me awake at night, probably aging me decades before my time.

Better today

Lili is doing better today. Still not eating much, but drinking much better. She's watching all the Sesame Street she can get and enjoying her time off from therapy. I expect she'll be back in her groove beginning next week. She'll go in on Wednesday the 28th for her stitches to be pulled out. NOT looking forward to that. Will be so glad to have this far far behind us.

Lili's surgery

Lili had her g-tube & trach resurfacing procedures yesterday, Feb. 19th. Lili's surgeon was very pleased with her outcome. The "back end" of the deteriorated g-tube was retrieved via scope down her throat into her stomach, her stoma (hole where the tube was) was stitched shut via several layers, and her old trach scar was successfully resurfaced for a smoother look. She is pretty wiped out, as you can imagine. She's been very quiet and ultra-protective of her painful procedure sites. We hope tomorrow is a better day! She should be surgery-free for the next 3 years then she'll undergo a mega-surgery to correct her sunken chest wall (pectus excavatum). That will entail a week long hospital stay in PICU for pain management. It is an incredible procedure, albeit a necessary one for her. Hopefully she won't remember this when that time comes around! I've created a small movie of her experience (see under Favorite Links). The last movie I made (my first one) took 2 weeks, this one took just over an hour. It's helpful for me to make it...kinda like therapy! It expresses what all we felt and saw today.

I'm an Obama Girl!

Check out www.dipdive.com! Obama is the way to go America! He brings me great hope for my kids' future (and is the only candidate to speak out about ASD!).

97th percentile in the nation!

Kyle got his IOWA (CogAT & ITBS) test scores back. 2nd graders in various school districts across the nation took it in November. He scored an overall composite scored of 97th percentile! Meaning he scored better than 97% of all of the 2nd graders who took the test. He scored 99th percentile in vocabulary, his best section score.:-) We are so proud of him. We both are claiming dibs on his brain ("must be from MY side of the family").LOL

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!