Monday, January 26, 2009

They Spent Money on This?

This is a recent study on autism:

“Men who do not find the shape of the curvier woman most attractive could be more likely to father children with autism, according to a study.

Researchers showed 100 men with autistic children pictures of curvy women; women with athletic frames and more rounded women and found that they do not have a preference on which figure they find more attractive.

The new research from the University of Bath suggests that fathers of autistic children do not share the preference of men across the world for the curvier woman.”

Here are the recent statistics:

- 1 in 150 children

- 4:1 ratio of boys to girls

- 1 in 98 boys

- Fastest growing developmental disability

- 100 billion annual costs

- In ten years the annual costs are projected at 200-400 billion.

- Cost of lifelong care can be reduced by 2/3rds with early intervention.

- A family with a child with autism will fund 3 to 5 million dollars of services throughout the lifetime of the child.

- More children will be diagnosed with autism this year than cancer, diabetes, Downs Syndrome and AIDS combined.

- Autism receives less than 5% of the research funding of most of the more prevalent childhood disorders.

- Approximately 1 million individuals in the US have autism.

And someone is spending money on whether or not dads preferred Marilyn Monroe or Olive Oyl?

Friday, January 2, 2009

2008, I knew thee too well

2008 is over….

Every New Year’s day I try to look forward with optimism to the New Year. This year I won’t. I have decided to consider 2009 a rebuilding year.

I have watched family and friends lose their jobs, their houses and their marriages. I have doctors wanting to subject my children to tests that will be hours of shear terror for them since they don’t have the language skills to understand the tests. The tests are also unnecessary. For once, I hope the HMO refuses to authorize the procedure. (24 hour EEG for a child with no seizure activity who is super sensitive to all sensory input and it took two techs to swaddle him and restrain him for the 15-minute one.) DH had his ankle fused and screwed and is still non-weight bearing. Family does nothing but pick fights with us. Can’t let any get together go by without at least one snide comment.

I don’t know what the answer is but I am beginning to believe that I should hope for the best and expect the worst….seems the best way to keep sane in this world.

So, here’s to 2010…if I play my cards right in 2009, then I can greet you with optimism. If not, well, it will be another rebuilding year. Maybe I’m the Detroit Lions…

Tuesday, August 26, 2008

Playing Funky Music With Werewolves All Summer Long.

Is it just me but does Kid Rock’s new song “All Summer Long” start our like Warren Zevon’s “Werewolves in London” and then move to Wild Cherry’s “Play That Funky Music White Boy”?

Monday, July 7, 2008

Community or lack thereof.

We spent the 4th of July with a friend’s family. We had a big chicken barbeque, tons of good deserts and later, illegal fireworks. This family is one the few that fully accepts our children. No subtle (or not so subtle) put-downs. Just acceptance and help. They actually help us keep an eye on DS2 and DS4, who are runners. I thought about how rare this situation is for us and how our perception of our community has changed since our first two children were born.

Once your child with a disability is born, the community does not know how to react. Should they congratulate you or offer condolences? Since they are unsure, they usually do neither. They talk of “miracle” babies but if the “miracle” is incomplete, i.e. disabilities appear, the child is not longer miraculous but is a hindrance, a parasite on the community.

Your life is filled with surgeries, doctors’ appointments, and therapists’ appointments. You have no time to nurture relationships with family and friends. And, no one cuts you any slack. You cannot just get the teenager from down the street to baby sit. Heck, your own family doesn’t want to deal with your special needs child. Your child makes your friends uncomfortable. It is an “in your face” reminder that there, but for the grace of God, go I.

You are advised to “get over it,” “accept it” and “get on with life.” How can I “get over” my child’s multiple impairments? I live my life knowing that my children will face pain, both emotional and physical, teasing and unacceptance. I spend my days fighting for insurance coverage for therapy, surgery and medical equipment. I’ve been meeting with school officials regarding special education services since my children were barely home from the hospital. Who will advocate for my children when I am gone?

Special needs children are more expensive than neurotypical (NT) children. A basic stroller for an older child with special needs is over $2,000.00. Most insurance coverage has a 50% co-pay for durable medical equipment, such as a stroller. Diapers cost more the older the child is. We reach our lifetime caps on medical insurance sometimes before the child comes home from the hospital. More money goes out so more needs to come in. Both parents feel the strain on their marriage. The divorce rate for parents with special needs children is near 85%! The fear that the marriage might crumble is a very real fear.

Our neighbors in the “community” don’t want group homes in their neighborhoods. Zoning restrictions define “family” and limit the number of unrelated persons who can live in the same dwelling. Not in my backyard! We don’t want “those” people in our neighborhood.

Our community claims that all life has value. That our children have value. But, our community does not value our children. We are not welcome in homes, in churches, in schools, or in neighborhoods. We are hissed at in stores to “make our children behave.” We are muttered at in restaurants if we try to act like a normal family and have a night out. People won’t sit by us at fast food restaurants and they pull their children away from ours at the park. Isn’t it sad that as a society we have lost that sense of community? It is not enough that NT children be allowed to participate, go to school, attend church, and maybe even be a basketball star. Those opportunities must be open to the child with disabilities as well. That is the gift of community.

Wednesday, June 4, 2008

Snidley Whiplash

I have a job. I throw people out of their houses after they have been foreclosed on. As you can imagine, it’s scads of fun. Nine times out of ten, they know it’s coming and they don’t even show up at court. Occasionally, the “owner” didn’t make his payments but s/he had the place rented out to unsuspecting tenants. So, s/he pocketed the rent, and left the tenants to spin. And, the banks or mortgage companies also contract with realtors to get the locks changed and the places ready for re-sale ASAP. Sometimes, the realtors try to “hurry” things along by turning off utilities or changing locks, thereby exposing the banks and mortgage companies to liability for a wrongful eviction. (The technical term in my area is constructive eviction). It also exposes me to the wrath of the judge since I’m the representative who gets to explain “why” the bank tried to hurry things along.

As you can imagine, business is good. I do about 400 a month. I tell you this to show you the enormity of the situation. Lil’ ol’ me makes about 400 families homeless a month. Actually, most have moved on and show up to court because they feel a sense of duty to come, they are curious, or they want to vent at me. Only one has wanted to punch me out so far. One homeowner “turned the matter over to the Lord Jesus”. She wanted $100,000 to call Him off or “He will strike (you) down and (you) will spend eternity in hell for (your) actions.”

However, I have been able to help a lot of people. In my travels I have met several families with special needs children who did not know about some of the services and benefits to which they were entitled. I have also successfully referred many people to bankruptcy so they could get a fresh start. I also joined a community action board that helps with utility payments and other housing services so I could make informed referrals for people. Ah, maybe I’m just rationalizing.

Sunday, May 18, 2008

Do You Have What it Takes?

This is not my list but I love it anyway. I have no idea where it came from so I apologize in advance to the original author.

What it takes, besides patience and love, to be the parent of a child with Autism:

1. Scientific researcher.
2. Education advocate and educator.
3. Insurance specialist.
4. Herbalist and dietitian.
5. Doctor.
6. Lawyer.
7. Shaman/Witch Doctor.
8. Expert negotiator and arbitrator (Think IEP).
9. Political lobbyist/activist.
10. Speech and letter writer.
11. Lectures "R" us.
12. Internet explorer.
13. Book reviewer.
14. Biochemist.
15. Play date party organizer/caterer and referee.
16. Web site designer.
17. Assisted technology and software reviewer and beta tester and inventor.
18. Never ending explorer of ways to say "GOOD JOB!"
19. Crisis intervention specialist (Talking your spouse or other parents off the tower).
20. Marathon runner. Stamina and world-class speed.
21. Tae Kwon Do expert. The defensive prowess of Bruce Lee.
22. Disney movie cataloger/VCR Mechanic.
23. High angle rescue specialist (How in the heck did she get on the roof?)
24. Builder. Get me my patch kit honey there's another hole in the wall.
25. Tough guy with a good chin. You know like Rocky.
26. Make up artisit. You should not be able to tell or care if you’re having a good or bad hair day.
27. Advertiser/campaigner (Therapist wanted flexible hours etc......)
28. Navy SEAL, complete with high sleep depravation threshold.
29. Low sensitivity to screaming and/or loud banging noises.
30. Maid. Man, do I love to do laundry.

Monday, March 24, 2008

You're Going to Need a Bigger Boat

It has been a crazy few weeks. I came home a little early from work the other night, about 6:00 p.m. DH, the in-home respite worker and I were trying to decide on dinner. For some reason, I looked over at DS #2, who was at his usual seat, on the bar stool, watching videos on the laptop. Normally, (or perhaps I should say “usually”) he replays a small segment over and over and over…. For whatever reason, I looked at him and noticed that he was drooling onto the keyboard. He was slightly hunched over it, but that is not particularly unusual since he is legally blind and often puts his face right up against the screen. The drool was unusual.

We had just been looking at pictures of when he was 2 and 3 years old. He still drooled then and almost always wore a bib. DH and I had congratulated ourselves on getting his oral motor skills strong enough that he no longer drooled, or if he did it was very minor and when he was excited. So, I was a bit chagrined to see the drool stringing from his mouth to the keyboard. I grabbed a towel, wiped his mouth and asked him why he was drooling. He didn’t pull away or object when I wiped his mouth, so I grabbed his chin and looked him in the eye, to repeat the question. Then, I said, “OMG, he’s seizing!” DS #2 was quite ashen, his carotid was just bulging and his stare was vacant. When we couldn’t bring him around in a minute or so, we laid him on the floor and began to document the seizure. Since, a few months ago, the school claimed that DS #4 was seizing, we knew the questions that would be asked. After 10 minutes, I called the doctor.

Of course, I got the new doctor. I had to go into my brief litany of 25 weeker, profoundly autistic, severely mentally impaired, blah, blah, blah. She made me call 911. So, eventually I had a sheriff deputy and two EMS units at my house. By then, it had been 35 minutes and he was coming out of it. But, we had to go to the ER, which I dreaded. After reading so many ER blogs, it seems that most ER workers despise the people whom they serve. Especially those who arrive by ambulance when there is no trauma. I didn’t want to go but I had to per the pediatrician. So, I rode shotgun.

You might think that the ER doctor would appreciate the fact that we had 3 adults there and had documented the event but noooo. I used the word “Nystagmus.” So, then the Munchausen’s by proxy questions started. Like I enjoy coming to the ER. I’ll have you know that this is only the second time that I have been to the ER with a child in the past 12 years. I know it’s unusual to have 4 kids with autism but professionals have diagnosed all of them. The kids are rarely sick but when they do it, they do it big. Last time we saw a specialist, I got chastised because there was “nothing” in the file. Just 4 well child check ups and a pre-op physical before dental work done under anesthesia for my then 4 year old DS #4.

I do learn about my children’s illnesses so I know what’s going on. I guess you can’t win for losing. If you learn about your children’s issues so you can have an intelligent conversation about them, you get accused of Munchausen’s. If you don’t learn, you get accused of neglect. Oh, and I know the term "Nystagmus" because it’s part of sobriety tests performed by the police. But, I didn’t even want to go there. I prefer the ER to NOT know that I am an attorney by trade.

We had labs drawn, had a CAT scan since he wouldn’t stop vomiting, and then went home. Of course, the ER doc called the pediatric neurologist during our ER visit and the neuro told me to follow up with his office. When I called to follow up, the office wouldn’t give me the time of day. They said it was impossible that the neuro told me to follow up directly. And, there is no other pediatric neurologist in the area. The pediatrician got involved and took care of it. See, this is where I get annoyed again. I’m looking for cooperation people, not obstructionism.

So, the EEG is set for this week. That will be scads of fun! An almost non-verbal 12 year old, who hates to have his head touched, having an EEG. At least I’ve been through it in the last 6 months. I’ll tell you though; after seeing this seizure, there is no way that my younger son is having seizures. No one would miss this. This would scare the pants off you. It did us and we KNEW it was a seizure.

On the up side, I had a great conversation with one of the nurses at his school. There are 4 RNs at the school and probably over ½ the kids there have seized at one time or another. She’s got it set up so that if he seizes at school, they will call a stat. All 4 nurses will come down and document the seizure for us. If, in their opinion, 911 needs to be called, they will call. Otherwise, they will document the seizure and let me know. They also have oxygen available if needed. If he begins to seize regularly and needs oxygen regularly, then they will have us get a prescription. She also told me that many of the students seized once or twice during puberty and haven’t seized since. For some of those kids, it’s been 10 years. So, we feel that this may be a one-time deal. No meds at the current time.

Just when you thought it was safe to get back into the water…..