Monday, June 4, 2007

The Day After...

It's the day after our families BIG debut on the front page of our local newspaper (see post below). We've received supporting email and of course comments here, (thank you) also a bunch of t-shirt sales on our website. Still none in Utah yet! ; )

Our reporter and photographer were here for two hours doing the story, which again was done very well. Unfortunately, they can't include everything we talked about, so I'd like to bring up a few things that we feel are important that was left out.

There were 3 things that got our stress level to the point where it resulted in our children being taken away by the state (S.T.I.N.K.S. : State Took Innocent Non-NT KidS) for 2 weeks.

1) Our Finances: bottom line we are dirt poor. As the story mentioned I lost a previous job, it paid well, it had insurance, we weren't poor then. But now with the need to take off 1, 2 or sometimes 3 days in a pay period...makes it tough. We do get SSI for 3 of the 6 children, got denied on the other 3, not 'disabled enough'. But that has just put us back to the annual pay of the previous job. End result: finances are a bit better then before S.T.I.N.K.S.

2) Respite: rest, a break from the children for Mom and Dad. The two that are 'Classic Autistic' get state funding for respite. At first when we received approval we were ecstatic! Then we were told the respite was for THEM only, none of the other four could be watched. So we use the help to pick up after the wreaking ball "The Destroyer", and other help around the house. We are VERY grateful, but it's not a break from it all. End result: About the same as before S.T.I.N.K.S.

3) The House: 3 bedroom, one bath, no basement for us eight. Right around 1200 sq. ft. We rent so it's not ours to do with what we need. The two older boys share the bedroom with our pantry shelves. Made that into our 4th bedroom. We'd like to buy a home, but the credit has taken a beating and we don't have enough income now (see #2). Extreme Home Makeover you ask? The rules are you have to OWN the home. End result: not much changed here either then before S.T.I.N.K.S.

Anyway, enough of that, need to take a few hits of Mom's Zoloft if I keep this up.

We picked up ten copies of the newspaper, hey! it's not everyday your family gets on the FRONT page. As I was getting rid of the other pages, I noticed that on the page just before the inside pages of our story, was a full page an ad for "Ivory Homes". Nice... new... BIG... homes that would fit our families needs. Hmmmm, dang it, where is that ZOLOFT!?

We would like to set up a non-profit something like the 'Make-a-wish' organization. The "Autism Bites Foundation". Families devastated emotionally and financially by Autism need help. Does any one know someone that can help us realize this dream? We'd like have an "Autism Bites" parents support group in every state also one day soon. How do parents become a member? Wear one of our t-shirts to the meeting and tell 'war' stories about your kids and cry and laugh with each other.

Angie, our news reporter, emailed to say that the story has already generated a bunch of interest. The Bottom Line?: If we can do some small part in making life a bit bearable for other Autistic parents, well then that would be a good...no a GREAT thing!

Love your kid(s), even if they don't notice you in the room. Even when they still use diapers at 9 yrs old. The best way to love your children? Love their Mom, or Dad. Don't give up, take a break, even if it's only in a locked bedroom for a hour or so.

Dad

11 comments:

Ginger said...
This comment has been removed by the author.
Ginger said...

Hi.

Utah Sucks.

I know that you can't say that, so I will just go ahead and say it for ya.

When a mother of any number of autistic children makes a joke that her house is too messy, you don't take her kids away, YOU HELP HER CLEAN THE HOUSE!

http://tinyurl.com/yuh46o

Autism Reality NB said...

Hi, I have one son with Autism Disorder. I was amazed by your story and your struggle. Good luck and best wishes.

Linda said...

I can totally understand where you are coming from. I'm the mom of a 9 year old autistic son. Nothing for "autie families" is ever as good as people think it should be, but it's seldom as bad as it could be. Shame on the state for taking your children even for the short time they had them. I can't even imagine how terrifying it must have been for them and for you and your wife.
Keep blogging...it's good for the soul!
Best Wishes,
Elle C in CA

swid441 said...

Hello,

My name is Pete- I'm a fellow Utahn, and have an autistic son. I am a firm believer in bio-medical treatment for autism. I know it works. I have a son who is completely different after 1.5 years of treatment. One of the best doctors to help you is Bryan Jepson. He is also from utah, recently moved to Texas in a specialty center for autism. You can change the course of your children's lives. You do not need to suffer. Things can get better. We live in a wonderful time when there is so much knowledge about autism that is surfacing- you can make a difference in your children's lives. I'd like to point you in the right direction. I can see from the Des. news pictures that you don't have your children on a GFCF diet. (the pizza gave it away. PLEASE go to this website and check out some of the options available to you. http://www.treatingautism.com/

If you have any question, please email me at swid441@alpine.k12.ut.us

IF SOMEONE ELSE IS READING THIS AND DISAGREES WITH ME, PLEASE DON'T SEND ME A BUNCH OF HATEMAIL PLEASE.

Dadof6Autistickids said...

Ginger,

Yes, we won't say that Utah sucks but for a different reason. Our problem was one concerned social worker and another "gung-ho snatch the kids and ask questions later"
uh...case worker.

Some other words were coming into my mind, BUT like Grandma used to say, "if you can't say something nice, then don't say anything at all.

mcewen said...

Hi I read the article and now I've found your blog!
You have had such a tough time of this, I'm sure none of us can even imagine.
Best wishes

Ginger said...

I would like to echo Swid.

When we tried the GFCF diet, our son began making eye contact and answering to his name for the first time since his regression 10 months earlier.

We have been doing biomed with Chandler for the last three years and he has made huge gains.

It is work, and it would be 6x the work for you guys, but it might change your life dramatically, because even a little improvement in each child would add up!

Read Jepsom's new book. I actually have an extra copy if you want it. email me your address and I will stick it in the mail.

You will just have to do with the one copy though. I can't afford 6. ;)

spydyee said...

Excuse me may I ask a really nasty question here? As a Latter Day Saint I want to know where is the church in all this. I assume in the fact that one of your childrenis named Nephi that you are members whether active or not. Where is the church. With all my work I have done with church educational services to "enlighten" them about this issue after my own crappy experiences now you are having problems. Where is the compassionate service to help with the house? What the heck is going on out there that autistic kids are getting ripped out of their home and I don't see where you are getting any help from the church. Please tell me what you need. I WILL MAKE SURE YOU GET REAL HELP! THIS IS OUTRAGEOUS AN TOTALLY UNACCEPTABLE
Go to my blog http://combating-autism-speaks.blogspot.com
and post your wish list under the services desired post. Pull my e-mail off the Welcome post and e-mail me. WE WILL GET SOMETHING DONE FOR YOU!

jules said...

I read your blogs and see my life.
Autism bankrupted us. We are renting a small 3 bedroom. Have 5 kids.
You have no idea how much better you are making me feel!
Thank you for blogging!!!!

Anonymous said...

let me call a wahhhmbulance for you. maybe you should have stopped after the first child? extreme makeover home edition? the house would just be destroyed.