Happy Labor Day!

Well, it's Labor Day and nothing has changed. It seems most parents with children on the spectrum ONLY write all the lovely things. I can't! The twins' sleep issues are overwhelming everyone in our household especially me. I can NOT remember the last time I had 8 hours of uninterupted sleep. I am the most irritable person I know. I am barely getting through each day. Praying has NOT helped. With NO outside support, we have NO break. Steve works permanent midnight. UGH!
Ashley's issues are getting worse and her regression since deciding to stop GFCF has plummeted. She argues everyday. Her self talk has become a much bigger issue as well as her attitude. She refuses to take supplements of any kind.
Jesse's issues are just as bad. Virtual charter school is NOT the answer. But throwing him into the public school system w/o proper supports isn't either. The arguing daily with Ashley is beyond words. XBOX 360 has become a HUGE problem. Everyday he is bargaining. Life with him is increasingly difficult.
I am on the verge of a nervous breakdown. My legs ache, my back aches, my toenails turn blue...I am having more and more health issues that I do NOT have the time or patience to have taken care of. When will this nightmare end???

Rally day in D.C. with Jenny McCarthy and Jim Carey

Well, we missed the rally today in D.C. The twins were feeling under the weather and I let them sleep in as they needed it. I also had to make their pureed food. So, much of the day was spent in the kitchen. I really missed going but the kids come first.

Tomorrow, we have to travel to Hopkins for Sam's appointment with Dr. Bernie Cohen regarding his Alopecia Areata. It will be a long day.

Happy Memorial Day!

Well, it's Memorial Day and we are just sitting home relaxing, I guess. After being in PA for nearly 10 months, Sam is finally in his own room. YEAH! All 4 kiddos now have their own rooms and it's nice to be able to finally sleep in my own bed vs the sofa. Sam is doing well considering he has not been in his own room for nearly 1 1/2 years. He has slept in his crib in our room for quite some time. It's pretty hard to sleep when Sam is either up stimming or up bouncing and squeeling.

I have been trying to keep up with my blog but it's been pretty darn hard in between appts. and the twins' sleep issues. We have beautiful weather today for the first time in a very long time. We were beginning to think rain was going to take over forever.

Oh, how I know it's Monday...

Nothing ever seems to go roght on Monday...
Sammy didn't sleep well last night. Sam has "Allergic Conjunctivitis." It seems to be par for the course this time a year. He went down for a much needed nap pretty early. Stevie is doing pretty good for going to bed last night around midnight and awakening at around 8:30 a.m. He's getting into some toys as I write and pretty happy. But NO nap and NO time for mom to take a much needed break. Well, I have to go take some Motrin for a headache. UGH!

AUTISM STATISTICS

AUTISM STATISTICS.
Here are some stats on autism today:
Did you know.......
1 in 150 children are diagnosed with autism.
1 in 104 boys are on the autism spectrum.
67 children are diagnosed per day.
A new case is diagnosed almost every 20 minutes.
More children will be diagnosed with autism this year than with Aids, diabetes and cancer COMBINED.
Autism costs the nation over $90 billion per year, a figure expected to double in the next decade.
Autism is the fastest-growing serious developmental disability in the United States.
Autism receives less than 5% of the research funding of many less prevalent childhood diseases.
There is no medical detection or cure for autism.
Boys are four times more likely to have autism than girls.

INCIDENCE VS. PRIVATE FUNDING
Leukemia affects 1 in 25,000/ funding:$310 million
Muscular Dystrophy affects 1 in 20,000/ funding: $175 million Pediatric Aids affects 1 in 8,000/ funding:$394 million
Juvenile Diabetes affects 1 in 500/ funding: 4310 million Autism affects 1 in 150 / Funding : $15 million.

NATIONAL INSTITUTES OF HEALTH FUNDS ALLOCATION Total 2005 NIH budget $29 billion Of this only $100 million goes towards autism research.
This represents only 0.3% of the total NIH funding!

Exhausted...

It seems as though the twins do not sleep as much as I'd like. Today, hubby let me sleep in. The twins were up around 9am with no naps at all. Remember, the only time I have for me is if they take a nap. Other than that I have no time. Their older sibs did take them for a walk in their stroller twice today in which I tried to catch up on emails. And boy, do I have a lot of catching up to do. The weather in P.A. was beautiful, sunny and warm. The twins love their walks. Hubby now has Sam in the tubby and Stevie's next. YEAH! I am positive that they will be in bed early. But that means early to bed for me as well so I can start another day with them. It's like "Groundhog's Day" over and over...

The start of a new day...

Hi, I have decided to start a blog about our family to keep track of what's new and what's not. At some point, I will fill everyone with a little background but for now, I am going to take a nap while the twins are down. YEAH!