Jenny Whitty's Open Salon Blog

Sometimes Autism Makes Me Crazy

Thu, 15 Apr 2010 21:04:10 -0400

Dinner started about 30 minutes ago, but I'm sick to my stomach and tired. Downstairs I hear my five year old screaming, "I'm not the eat faster guy!" while our four year old just screams. Both boys have autism and my husband is fighting a desperate battle to get them to eat. I'm upstairs with my hands cupped over my ears wishing I had ear plugs. If my husband didn't handle situations like this I don't know what I would cope. Our house won't quiet down until nine, or maybe ten o'clock.

Today was supposed to be an easy day: take five year old to get re-fitted for orthotics, pick up four year old from early childhood center, feed them lunch and then drop them off at pre-school for a blissful few hours of peace and quiet. Instead, my five year old reached to close the back door of the car just as I was closing it and his poor little hand was smashed. The emergency room at the hospital refused to give us ice, so I carried my crying son to the PT/OT clinic where we were supposed to have his feet measured. They gave us ice, calmed us down and measured his feet. I filed a complaint with the hospital about the emergency room, and drove my son home to feed him lunch and then take him to get his hand X-rayed. My husband was recruited to pick up our four year old, feed him, and drive him to preschool.

It was 2 o'clock by the time I dropped my five year old off at preschool. His hand is fine, just bruised, and he was happy he didn't miss snack time. I just wanted to crawl into a ball and cry for the rest of the day. I'm not sure why today is different than other days when I just suck it up and move on. Today I feel like I'm on the verge of just losing it. A padded room and a straight jacket sound like comforting things. On days like this one, I dream of an extended stay in the hospital away from this life. It's a good thing these days are not the norm, but I wish they didn't happen at all.

It helps to write. Somehow it relieves the pressure and I can keep going. The educators that smile and say my children don't need therapy because it costs too much money, the insurance lobbyists who say my children don't really deserve therapy even though we pay premiums too, and the politicians who only see my children as photo ops. It's enough to make a person sick to their stomach for days on end. I'm tired.

So, today autism wins. Tomorrow...

259 Pounds...

Sun, 24 Jan 2010 02:01:13 -0500

How many of us think about our colons? I know I never really even gave my colon a second thought. I'm 36 years old and I thought I wouldn't have to think about my insides until much later. Wrong!

My doctor is still looking under the hood. I was diagnosed with diabetes in May and a heart condition in June. My doc wanted to do some more tests to find out why I have mild anemia. One of those tests I put off for a month and a half because I just didn't want to deal with it - the stool sample. Mine came back positive for blood so I had to have a colonoscopy. Ick! The only good thing that came out of all the prep you have to do to clean out is that I hit the 259 pound mark.

It was a good thing I had the scope. My doctor found a polyp and removed it. They've sent it out for biopsy and now they know to keep an eye on me. Now I have one extra incentive to watch my diet and exercise. Apparently exercise is the number one thing you can do to prevent these polyps that can turn into cancer.

You can't take your health for granted. Obesity is a killer and I'm finding out the hard way all the damage I've done to my poor body. It makes me sad.

Just a short note this time. Here's to 259 and the 250s! Only 104 pounds left to go!!!

Missouri State Rep Against Insurance Coverage for Autism

Wed, 13 Jan 2010 00:01:49 -0500

Missouri House Representative, Cynthia Davis, has been featured twice on MSNBC's worst person in the world list (she made #1). Yes, this is the woman who said 16 year olds are old enough to work for their food and they should not be eligible for free school lunches. My favorite quote, "Hunger is a great motivator."

Stephen Colbert also had a lot of fun with Ms. Davis's remarks on his show, The Colbert Report. He tips his hat to Ms. Davis and suggests Missourians, "take her food away."

http://www.colbertnation.com/the-colbert-report-videos/232637/july-01-2009/tip-wag---cynthia-davis---fox-news

Now Davis is attacking kids with autism. She's bought hook, line, and sinker the propaganda insurance companies want every lawmaker to believe: that covering treatment for autism will cause insurance premiums to skyrocket. The truth: fifteen other states have passed similar legislation and they report an average of less than a 1% increase in premiums.

Davis says school districts should shoulder the burden. Wouldn't that cost tax payers MORE money?

Davis also believes parents should just do the therapy themselves. Just like with a stroke patient, the earlier the treatment begins for a child with autism the better the outcome. For both an intensive intervention plan includes speech, occupational, behavioral, and physical therapy. Do we suggest families of stroke patients perform therapy on their loved ones? No! Of course family members are happy to do some exercises a therapist recommends and work day and night to help their loved one, but a stroke patient needs those hours and hours with trained therapists just as a child with autism does.

I would love to ask Ms. Davis what she would have me do. I have a 4 year old and a 5 year old with autism. Should I cut myself in half to deliver the hours of intensive therapy my children need? What would she have my boys do while I go back to school to get the training I would need to treat them?

This woman (who got in trouble for paying her mortgage with campaign funds) says the proposed bills to make sure autism therapy is covered by health insurance companies in Missouri are nothing but, "feel good legislation". Tell that to the families who have lost their homes and filed for bankruptcy due to medical bills to treat their children. Too bad they don't have campaign funds to dip into.

(My best Stephen Colbert imitation) I guess I can see her point. After all, children don't vote. Ms. Davis has more important legislation to propose that would ensure senior citizens don't have to pay property taxes (they vote A LOT).

The following is my appeal to Missouri voters to support Senator Scott Rupp, the man Cynthia Davis intends to run against in the Republican primary this fall. Senator Rupp also happens to fully support and sponsor the Senate bill for insurance coverage for autism therapy. Plus, my son, Simon, really likes the Senator and he's a really good judge of character.

Senator Scott Rupp

Senator Scott Rupp with my 5 year old son, Simon.

Dear Friends,

Senator Scott Rupp and his efforts to pass meaningful autism insurance reform legislation in Missouri are under attack. Rep. Cynthia Davis, who plans to challenge Sen. Rupp in an August 2010 primary, has been vocal about her opposition to the bill and is actively working to derail its chances of passage in the Missouri House. She’s stated that the autism insurance legislation is simply “feel good legislation" which would make Senator Rupp and other supporters “feel proud of themselves”. She calls autism an "educational problem" and is circulating false information about the costs and impact of the legislation. What’s more offensive are her suggestions that we as parents simply don’t know how to help our children. She believes we just need more information and training so we can "lovingly" help our children all by ourselves without therapists. I wish she would take the time to educate herself in order to get the facts straight on autism and the treatments our children need, the discrimination we face from insurance companies, and the proposed legislation before she spreads misinformation and attacks Senator Rupp for his passionate efforts to help our children with autism. It's unfortunate that her political motives to try and find some way to distance herself from Senator Rupp are at the expense of Missouri's children with autism and Missouri taxpayers.

Senator Rupp has been a leading advocate for individuals with autism and other developmental disabilities. As the 2010 legislative session gets underway, PLEASE join us in expressing our gratitude for his efforts by emailing him at scott.rupp@senate.mo.gov and log onto his face book http://www.facebook.com/Scott.Rupp to become his friend and give him some encouraging words of support to continue his good fight on behalf of all children with autism and our families in Missouri. Please forward on to your friends and family to make certain they are aware of Cynthia Davis’ efforts to derail this bill.

Also, PLEASE contact your State Representative and State Senator to make sure THEY have the facts right on the bill and what it means to our children with autism.

Sincerely,

Jenny Whitty
Missouri Mother of 2 boys with Autism

Follow Through

Thu, 7 Jan 2010 16:01:28 -0500

I walk by the same pile of junk on my dresser every day. A mish-mash of jewelry, soap, lotion, papers, and dust collects and I walk by as if not to notice. I'm digging out from the pain and sadness of four years, and now I see all the damage, the neglect. While I was mourning the autism, fighting for services, and advocating for change my bedroom and my body were falling into desperate disrepair.

I watch the show, Hoarders, every Monday night on A&E without fail. I think I'm looking for the "why" of it all. How does it get to that point? When life seems to be spinning out of control, why does it seem better to have piles of paper crowding around me? I filled my bedroom with dozens of books and articles on autism, binders with data on my son's progress, therapy flash cards, files, photos of my kids. Is there a connection between the stuff and the 50 pounds I packed on? Now that I'm in the slow process to clean it out and lose the weight I worry that it could all happen again.

Each week I lose approximately a pound of fat, and I donate a trash bag full of things. This week I donated 3 bags of items to my sons' school, and three trash bags of stuff to the Disabled Veterans Association. Last week it was a bag full of sheets to the Regional Center so The Linus Project can make weighted blankets for kids with autism. At this rate, my house and my body should be back on track in just over a year.

"Reality" shows make it look so easy. A person loses 100 pounds in 6 weeks, or an entire house is cleared of clutter in 2 days (and redecorated). What I want to know is how long does it take if you do it yourself? What is a "normal" rate of decluttering look like? Is it possible to dig yourself out without a TV reality show taking over your life and doing it for you?

It all comes down to the 'follow through'. One day instead of just walking by the dresser and thinking, "I need to clean that up." I picked up a necklace and hung it on the hook in the bathroom. Instead of ordering a large Coke I chose a large water and ordered a salad as a meal for the first time. Believe it or not these things do add up. Healthy people know this and do it without thinking.

My therapist told me something very simple when I went to her with help during one of the most painful times in my life. She said, "take care of yourself". I'd tried every other way, so I thought I'd try hers. You know what? It worked! Hoarding and weight gain cannot thrive in an atmosphere of care. When I care enough to follow through (to keep up with the stuff coming in and get rid of 3 or 4 things each day from the pile that was already here) I make progress. It all adds up! This is kids stuff to most, but to me it is a real life-changing revelation. Now instead of feeling bitter that Oprah hasn't shown up on my doorstep to help me out in a millisecond, I'm thankful that I'm working through this process in real-time. I'm learning so much more from "reality" than a reality TV show could ever teach me.

Best wishes in this new year for all of you working your way through your own reality. May you experience growth and success!

262... 261 Pounds...

Mon, 4 Jan 2010 00:01:39 -0500

Somehow I've lost weight over the holidays. Diabetes is a great excuse for not eating all the goodies. I had some, but not nearly what I would have had without diabetes lurking over my shoulder at every holiday event.

Not a lot to report. I'm tired from Christmas and New Years. Not looking forward to working out tomorrow, but getting ready to charge up the Ipod. Starting to have trouble finding pants in my closet that aren't too big. Not a bad problem to have!

Here's to 261! Wishing you all good health in 2010. Only 106 pounds to go and I'll be at the top end of my ideal weight. Wonder if I'll make it this year. I'm not in a hurry. A pound a week is O.K. by me. Looks like I'll be facing some skin removal at the end of this and that makes me nervous.