Starting Out with Autism

If I Knew Then What I know Now Things Would Be Significantly Different
There is a learning curve in Autism. Some people, bless their hearts, hit the road running and do more in the first month than most of us do in the first year. Unfortunately, that was not me but I have learned a few things over the last few years.
1. If you suspect something is wrong act immediately; don’t let you doctor or friends talk you into waiting. Contact Early Intervention for an evaluation if your child is younger than three. An appointment with a developmental pediatrician is a good place to start if you’re not sure what is wrong. Often there’s a waiting list for evaluations, so sign up as soon as you can.

2. A diagnosis is important.
3. The squeaky wheel gets the grease. Generally, people go into special education because they care about helping kids with disabilities. However, there are limited resources available.
4. Start with a two pronged approach: Bio-medical and conventional therapy. Will started ABA and other therapies through Early Intervention almost immediately after he became autistic. But it wasn’t until we started bio-medical interventions a year later that he started to improve.
5. Not everyone knows what they are talking about -- be that therapist, parent, doctor, advocate, etc. (A parent I know was advised by her advocate to request irrational things for her son. The school district asked the parents to go mediation!)

6. But be open to listening to everything. Some things the mainstream thinks are ridiculous ended helping my son the most.
7. Educate yourself – don’t depend solely on others. Read books on ABA, go to DAN conferences and other conferences. Take classes and observe therapy sessions. You can become just as capable as any therapist.
8. You will have to make sacrifices.

9. Remember that no school or program is perfect.

10. Things will eventually get better.
Helpful Hints

#1. Make sure there is not a medical reason for a behavior before trying to change it through therapy. Many behaviors that are considered stims or “autistic behavior” actually result from gastro-intestinal pain or other physical ailments that are not addressed because the child is autistic.
#2. Libraries are fabulous. I usually check out books rather than buy them.
Conventional Therapies I have used (there are many more):

Applied Behavior Analysis (ABA), behavioral therapy, is the gold standard for treatment of autism. Read books about it and take classes. I’ve taken two graduate level on-line classes that didn’t cost much. ABA is a method of teaching. It is not only discrete trials at a table. Basically you break down skills as far as you need to, to allow the child to learn. For instance to learn to brush teeth a child needs to learn how to open the tooth paste, turn on the water, put the toothpaste on a toothbrush, brush the teeth, spit, rinse etc. These steps can be broken down as far as they need to, and can be taught independently or as a chain of behaviors. ABA can be used to teach anything.
I’ve heard complaints that it creates robots or robotic responses. I believe that it gives the child a template to follow, and then as he is capable he can expand his response.
40 hours a week can lead to recovery for some children.
What is ABA?
Reference

ABAI Website
How to find a Board Certified Behavior Analyst (BCBA) in your state. Look in the registry.
Speech Therapy: It’s very important! Get a lot.
Social Stories: These can be very helpful. I write them for significant events like moving, going on a vacation or to address behaviors like pinching or why using the toilet is important. Carol Gray has written a short helpful book explaining the theory behind social stories and how to write one. I use Mayer-Johnson Pictures with my stories.
Books about social stories
Picture Schedules: These can be useful to help a child understand what is happening next and to promote independence.

Activity Schedules: Activity schedules “teach autistic youngsters to follow words, pictures, or other nonverbal prompts to complete all varieties of tasks.” We used one to teach Will leasure activies to replace non-functional behavior -- stimming. William now chooses the activities he will do with his ABA therapist.
Activity Schedules for Children With Autism: Teaching Independent Behavior
Augmentative Communication:

Picture Exchange Communication System (PECS) vs. Signing:

I think PECS are more functional. It doesn’t matter if a child is signing water if no one understands what they’re asking for. But that child could hand anyone a sentence strip or picture requesting water and be immediately understood. Few people sign and if that’s the only way the child communicates he is even more isolated and what’s worse isn’t always reinforced for communication!

I went to a 2-day PECS training seminar. I highly recommend it!

Yes, Marcy I wore sneakers this time.

My husband’s distant cousin’s wife had a baby about two weeks ago. Fabulous relative that I am I finally brought over a baked item. This isn’t as bad as it sounds because they’ve had extra mothers and aunts over there since before the baby was even born so I knew that they weren’t starving. But I can’t say that was the whole reason for my tardy gift -- the reality is that sometimes it takes me a while to make it over.

I had the brilliant idea that walking over would be a nice Sunday walk with the kids. So with Bri on her scooter and Lizzy on her bike we started off. I didn’t know how far away they lived. I thought it was a short walk but it was actually 2.8 miles round trip. That’s not a nice Sunday walk for me; especially since I carried Lizzy’s bike quite a bit when it was too steep or dangerous for her to ride.

But considering that the baby weighed 10 lbs 6 oz when he was born, I really should have brought over a solid gold loaf of bread rather than a loaf of blueberry walnut bread because, you know, she earned one!

My Feet Are Killing Me

Yesterday, I took my kids to Canobie Lake Park in New Hampshire. They love amusement parks and we’d never gone there, so it seemed like a brilliant end of summer activity. Everyone had a lot of fun and we didn’t lose anyone so the day has to be classified under the label of pretty darn good. Marcy and her family went too which was great since my husband was in Chicago.

Bri, Jake and Dave took off by themselves, while the rest of us waited in a line to get on a very dumb ride. Some of my kids are old enough to wander around by themselves and take Will on rides, which is great because I am getting old! I used to love going on wild rides but I decided at 6 Flags last year that I am too old to find any enjoyment in getting my head knocked back and forth between “padded” head supports on super fun rides like the Mind Eraser.

No, someone else needs to step forward and sacrifice their brain cells in pursuit of entertainment for Will. I am fortunate in having three other children, since my husband, possessing the notoriously weak stomach his family is known for, will not go on those rides either.

My children started off the day fortified with an apple, cheese stick and juice box. Since Bri and Lizzy didn’t eat their sandwich they were immediately ravenous. Bri ate a pizza but Lizzy and Jake would only agree to eat a bowl full of fripps (a chip like thing) covered in cheese sauce. I begged them to eat a hotdog, hamburger or pizza to no avail. It was fripps or nothing. Actually the fripps were the second choice. They really wanted cotton candy or ice cream for lunch. I said no, but have no fear for Jake he did eat ice cream for dinner -- because by that time I didn’t care anymore. Bri and Lizzy stayed with the “more” nutritious fried dough.

The day ended, as usual, with rain. Whether we go to amusement parks in Massachusetts or in Utah it always rains. It’s kind of a family tradition. Perhaps I should have warned Marcy about that when I suggested that she come with us. Oops. My bad.

Books

I’ve read some good books lately.

The Ascent of George Washington: The Hidden political genius of an American icon by John Ferling is really interesting. It’s a different look at Washington’s military and political career. It flushes out his character. Luckily for America, his military failures were ignored and congress put him in charge.

My dad insisted that I read The time it never rained by Elmer Kelton; and he hounded me until I finished it. It was a hard book to read –good, but hard. My dad had sheep when he was young and he said it was a true book. Ranching is a hard life.

I read Fatal Journey: the final expedition of Henry Hudson--a tale of mutiny and murder in the Arctic by Peter C. Mancall. It was quick and interesting. As to whether it tells the truth of what actually happened; well, it was based on the account of one of the men who returned. He, of course, didn’t mutiny.

Sick: the untold story of America's health care crisis--and the people who pay the price by Jonathan Cohn. Reading anything like this makes me crazy but that’s no reason not to be informed. Certainly there is a crisis in insurance coverage and its lack.

I read a bunch of books by Thomas Perry. I like the Jane Whitefield novels.

Grandma

When I look up numbers in my cell phone I skip past my grandma’s phone number. I even thought about calling it the other day. But I doubt that anyone would answer and what would I say if they did? After all I don’t want to talk to them. I don't feel like deleting it. So, for now it stays.

William's Regression into Autism

William became autistic in November of 2000; two weeks after routine vaccinations.

I was really lucky that I immediately realized what was happening. I noticed that his eye contact had disappeared and started working on improving it and by the time he had his Early Intervention appointment in early January (we had to wait until after Christmas vacation) his eye contact was much better. Because I told EI that Will was autistic they sent a specialist to the interview and he started ABA (Applied Behavior Analysis) in March (we had to wait for that as well).

Will regressed horribly! Before he became autistic at 17 months, he was social, happy and bright. If anything was going on he wanted to be in the middle of it. He would sit on my lap and request me to read book after book to him. After he became autistic he wouldn’t listen to even a page. He started ignoring everyone. He started toe walking, stimming, sucking on his tongue and lip. He would constantly jump and run in circles and started making a high pitched keening sound. He made the sound constantly unless he was watching TV. He regressed to the cognitive level of a nine month old. He completely stopped talking and babbling. He lost every skill that he possessed. He wasn’t even capable of requesting a drink anymore. I would suddenly realize that he hadn’t had a drink in several hours and guiltily offer him one. He would contentedly sit and suck on a piece of bread in his highchair for hours. It was really weird.

He worked up to 26 hours a week of ABA plus a couple hours with an educator and psychologist. He didn’t have speech because he didn’t have enough language for that at first. But even with all of this he didn’t make any progress. He would master an activity then a couple of weeks later couldn’t do it at all. He spent his free time stimming and watching TV. He stimmed with his fingers in his peripheral vision and constantly held a crumb in his bent first finger – he used the remaining fingers to eat or play with. He sucked his lip all the time. He had constant diarrhea. And he had a lot of crapisodes! He didn’t sleep much. He would fall asleep around 11 or 12 then wake up at 3:30am. And he didn’t wake up quietly. I would sometimes hear him laughing in his room but more often it was his high pitched keen. I taught him, good mother that I am, to go into Brianne’s room when he woke up. That amazing girl slept through Will screaming and jumping on her bed with the light on and computer blaring full blast.

I am not exaggerating at all.

I didn’t sleep much for a couple years. I was sleep deprived. (One of my friends told me I was a “little wacky” during that time.) I remember right before Lizzy was born that none of my kids were sleeping through the night. I was only getting two to three hours of sleep a night. Then by some miracle, after Lizzy was born they all started sleeping through the night. I remember feeling so energetic and bouncy because I was getting hours more of sleep a night than I was use to!

Imagine that if you will, I had a newborn but was sleeping hours more a night. Sleep deprivation is an effect of autism for far too many of us.

I don't know why

Will and I were in the car when I heard a bump from the back. I glanced back to see Lizzy’s car seat on his lap. He was moving it to the back.

HPV Vaccine Side Effects

Watch CBS Videos Online

Other Facts:

The Food and Drug Administration licensed the vaccine in 2006 to help women protect against four types of HPV. The vaccine, Gardasil, is recommended for females between the ages of 9 and 26. reference

Information on types of HPV viruses.

Gardasil Researcher Speaks Out

"Dr. Diane Harper says young girls and their parents should receive more complete warnings before receiving the vaccine to prevent cervical cancer. Dr. Harper helped design and carry out the Phase II and Phase III safety and effectiveness studies to get Gardasil approved, and authored many of the published, scholarly papers about it. She has been a paid speaker and consultant to Merck. It’s highly unusual for a researcher to publicly criticize a medicine or vaccine she helped get approved. . . She says data available for Gardasil shows that it lasts five years; there is no data showing that it remains effective ... According to Dr. Harper, assessing the true adverse event risk of Gardasil, and comparing it to the risk of cervical cancer can be tricky and complex. 'The number of women who die from cervical cancer in the US every year is small but real. It is small because of the success of the Pap screening program.' ... The rate of serious adverse events on par with the death rate of cervical cancer. Gardasil has been associated with at least as many serious adverse events as there are deaths from cervical cancer developing each year." reference

Horrifying blog posting on side effects women and girls experienced.

Gardasil and Paralysis

"About 4 reports per day were filed with VAERS in December 2006 for the HPV vaccine," said NVIC Health Policy Analyst Vicky Debold, RN, Ph.D. "Some of these girls are being injured when they collapse after getting the vaccine and others are complaining of neurological symptoms that should not be ignored. Doctors and nurses should take note of the patient safety issues related to giving this vaccine. Giving GARDASIL simultaneously with any of the 18 vaccines Merck did not study in combination is not an evidence-based guideline and should involve informed consent and a signed patient release. To avoid unnecessary injuries, teenage girls should be vaccinated laying down, not be left unattended and probably should not walk or drive themselves home from the doctor's office after they get vaccinated."

The FDA staff also questioned whether the “HPV types not contained in the vaccine might offset the overall clinical effectiveness of the vaccine.” There are more than 15 types of HPV associated with cervical cancer but GARDASIL only contains HPV types 16 and 18. It is unknown whether non-vaccine HPV types will become more dominant in the future. However, there are indications this could occur because some of the seven strains of pneumococcal contained in Wyeth’s PREVNAR vaccine, which was recommended by the CDC for universal use in all babies in 2000, have been replaced by some of the more than 80 other pneumococcal strains not contained in the vaccine. reference

MERCK'S GARDASIL VACCINE NOT PROVEN SAFE FOR LITTLE GIRLS

Bottom Line: The vaccine would definitely be 100% effective in the resulting paralyzed or dead girls.

Proof that Summer Vacation is Driving Me Insane

(Stop it Dad! I was not already insane so be quiet.)

After dinner Lizzy came to me and asked if it was alright that Will was eating pasta and sauce. (Now keep in mind that Will’s school ended on Tuesday and it was only Wednesday night.) I ran down the hallway shouting, “No Will! No pasta for old men!” Which was clearly a reference to the movie No Country For Old Men. Now why that came out of my mouth eludes me and I will probably never figure it out. I’m not sure why I overreacted because I didn’t think that Will had the regular pasta aka pasta with gluten -- which will cause Will to wake up at 3:30 am screaming; because I had hidden that pasta in the secret mini-fridge in the garage. (I also have secret drawers filled with foods full of gluten and casein but that’s another story.) But apparently, my default reaction to Will eating food that might contain gluten is to run down the hallway shouting nonsense.

Angry Eyes

After Lizzy and I walked in the house I glanced over at the bathroom. There was a bottle of peroxide out and blood on the counter. ‘Please let it not be a horrible accident involving a saw and someone’s finger!’ I prayed. “Who’s hurt?” I yelled up the stairs.

“No one,” Bri yelled back. “But Will had another Beautiful Cover Girl moment.” Will had found Bri’s bright pink nail polish. I found the fingernail polish remover and cleaned the tile, but the polish didn’t come off the countertop as easily. It’s a little pink in places. Yes, it does stand out against the white counter top. No, I don’t care. I am really use to things getting destroyed and I figure it might wear off during the next few years. Besides now it matches the polish he spilled on the carpet in the sunroom. (Well, I guess not exactly because that was purple – I really may need to ban fingernail polish from my house!)

After I gave up on getting the pink off my counter I went upstairs to find Will. He had painted his eyebrows with the Raspberry fingernail polish. His blond hair set off the beautiful color nicely. “He looks like Grace Jones.” I giggled.

My husband disagreed. “I think he has more of a Boy George look going.”

Then Bri added sadly, “I wish he hadn’t given himself angry eyebrows!”

But really, the angry eyebrows were adorable.

Thirteen

Brianne is adorable and smart and wonderful but every so often she does something that reminds me that she really is only thirteen. I was taking a shower after lifting with Marcy when Bri knocked on the door. “What?” I yelled. Eventually, I turned off the water to hear her.

“Can I take a shower in your bathroom when you’re done?” She asked.

Really? Really! I guess she couldn’t wait until I was done. I turned the water back on and told her to go away.

If Only ...

Will painted the house on Saturday. Bri and my husband primed the floor of the tree house. And Will found the paint. He came in the house with paint on his shorts, shirt, hands, legs and feet. I put him in the bathtub and turned the water on. After I scrubbed off as much paint as I could (his toes and heels are still white – I figure it will wear off eventually) I went outside to investigate the scene of the crime. There was a trail of white on the rocks under our deck, and white footprints leading to his swings. There were white paint droplets on the pathway and handprints on the back of the house by the door. It really stands out against the red! Most of it had dried while I was “depaintifying” Will, so not much came off when I scrubbed the house.

However, Will now has paint clothes if I decide to have him paint the house as a chore.

Only in Massachusetts

I love living in Massachusetts. It’s great! There is a deep and sincere commitment to education and people with disabilities, among other things. However, Massachusetts has a few foibles. One of which is requiring, by law, policeman to work as flaggers in construction zones. On Friday, as I backed out of my driveway I noticed a policewoman standing two houses up the street. She was out there to direct the non-existent traffic on my street. Keep in mind that my neighborhood is accessed only from the south. It has no cut through traffic at all. Days could go by with anyone driving down my street!

Then I drove through another construction zone. This section of road was flanked on either side by cones, detour signs and policeman. I’m not sure why neither the line of cones blocking off the road, nor the detour signs weren’t enough on their own but apparently they weren’t. Neither of these examples are as good as Marcy’s story of construction work on her street. Imagine a street ending in a cul-de-sac, maybe 12 houses on the street, a policeman and Marcy.

Naturally, as we drove past Marcy rolled down her window and said to the policeman, “Are you kidding me?”

His response, “It’s the law.”

We know it is, but really – Are you kidding me?

TRANSCEND

Last night Marcy and I went to hear Martha Herbert speak about her brain research at TRANSCEND. It was interesting. I’d love Will to participate in some of her studies. But the story that made the most impact on me was one she told about a non-verbal autistic woman in Canada who had surgery for something unrelated to autism. When she woke up she looked at her mother and said, “I’m sorry I’ve been such a burden to you.” And told her she loved her. They had about sixteen hours together until she went to sleep and when she woke up she was back to normal.

Things Are Changing … Well, Not Everything

Jake and a friend were playing Wii when Will walked by in a shirt and underwear carrying a pair of pants on his way outside. “Put your pants on.” I commanded as I followed him.

“William!” Jake exclaimed in a horrified tone.

“It’s ok. He’s autistic.” I explained to his friend as I followed Will outside.

But, maybe I misinterpreted the “William.” Maybe the scandalized tone meant Jake was embarrassed for himself rather than for Will. I tried to imagine myself as an eleven year old boy who has a new, older friend over for the first time and decided that Jake was definitely embarrassed for himself.

Poor Jake, he has a mother so immune to embarrassment that Will could have walked past the kid stark naked and I would have said the same thing. “It’s ok. He’s autistic.”

Because, as you all know, that excuses everything.

It’s Practically a Farm

My conversation with Jake.

Me: “I mowed the back yard.”

Jake: “Oh, sorry. I don’t like to mow the back yard because it’s so vast.”

My Open Letter to Michael Lynton the Chairman & CEO of Sony Pictures Entertainment

Dear Mr. Lynton,

Today I saw Julie & Julia. I really enjoyed it, but before it started I saw a preview for the movie 2012. It looked exciting. I would like to see it, but because it stars Amanda Peet I will not. I use to like her. In fact, I was one of the few people who watched Studio 60 on the Sunset Strip before it was canceled.

But I didn’t like how Ms. Peet inserted herself into the debate over whether vaccines cause autism. Ms. Peet, like everyone else, is entitled to her opinion; but speaking as a so called “parasite” I’d like to respectfully suggest that she has no place in this discussion. Speaking with a pediatrician even “every five minutes” doesn’t guarantee accurate information about autism or vaccines. Pediatricians, like other doctors, rely on the CDC (which has an inherent conflict of interest as it is responsible for both the promotion and safety of vaccines) for information relating to vaccines. And why even speak to Paul Offit about autism? Writing a book about something in which he has no expertise doesn’t make him an expert in autism. And Dr. Offit is by no means an unbiased observer in this discussion since he’s made millions in royalties from the Rotateq vaccine.

Autism affects at least 1 in 150 children. That's a lot of families. I am not implying that all of those families will choose not to see her movies or that all of those families believe that there is a link between vaccines and autism. However, a significant number of us do, perhaps as many as 2/3. Some of those families will join me in deciding never to watch one of her movies or TV shows again. I choose this not because I hate her, but because she only has the platform and power that the public gives her, and I choose to give her neither. As the mother of two boys who became autistic two weeks after routine vaccinations I ask you not to give her power or a platform either.

Mom ... Mom ... Mom!

Bri is away at sleep away camp this week. My husband is in Palo Alto. And I’m a little lonely. My friend’s son is away for six weeks and I feel a ton of sympathy for her. If it were Bri, about week three, I’d have to go bust her out!

Lizzy and Jake are spending their time together arguing. I get to hear things like: “Lizzy went in my room! I hate it when she goes in my room! Can I get an alarm?” And all I can think of is that he wants a cage hovering over his door ready to drop on Lizzy when she puts a toe in his room. It wouldn’t work … except probably on William.

But Lizzy isn’t the innocent victim. For over a week she had a sign on her door that read No Boys Allowed! In her defense she did mean both Jake and Will -- but Will ignored the sign. But listening to their arguing is causing me to seriously consider becoming a nun. Oh … wait, I’m not catholic and it’s too late to do me any good!

At this point, I’m waiting for the “she’s looking at me” or the “he’s breathing” complaint.

Summer is kicking my butt!

Health Care

My Car has a Scraped Butt

After I dropped Jake off at his kayaking lesson this afternoon; I was in a hurry to get back home. So, even though someone had just pulled up next to me (in the middle of the parking lot!), I tried to back out. Everything would have been fine if a pesky wooden post hadn’t decided to move at the same time. But it did. And it wasn’t.

I saw a huge dent in my bumper! Naturally, I tried to call my husband who is in Palo Alto to fix it. After all, he’s only there because of some “big business” meeting. I’m sure he’d much rather stress over what damage (and how much it will cost) I’m causing to our vehicles at home! In fact, that information would probably help him by distracting him from the stressful “business” meetings. I am such a good wife.

But he didn’t answer. So, I called Marcy. She advised me to wait to tell my husband about the dent until he’s home because 1. What can he do from across the country and 2. It’s really not that big of a deal. She volunteered that she's dented thousands of vehicles. Then she offered her husband Tom’s services. I was fully planning on bringing my van over to their house and having Tom bang on my bumper with a hammer until I got home. But when I walked around the van to have a second look, this time minus an audience, I realized there wasn’t a dent – just some scraped paint. Perhaps if I’d looked a little closer in the parking lot I’d have realized it before I wasted ten minutes hyperventilating on the phone to Marcy because, you know, she’ll never get those ten minutes back.

Teaching My Children Humility

After swimming backstroke at B Regionals last Saturday, Lizzy ran up to me and very excitedly said, “I beat someone, I wasn’t last!” In many ways that statement sums up the best of my children’s swimming season.

Bri hasn’t had lessons in two years. Jake has had a tumultuous relationship with swimming. He needed 10 group sessions and 9 private lessons to get him to level 3 in swimming. Then he stayed in level three for about four or five sessions. Lizzy was doing ok in swimming until she went to full day kindergarten. At which point she stopped taking lessons.

It’s difficult to take the kids to swimming lessons. Will gets really upset if he sees the pool but doesn’t get to go swimming. For a while I would spend several days mentally gearing up for swimming lessons. I would take the kids to the dressing room. They would head off for their lesson. I’d walk Will outside the building with him screaming the whole way. It was not pleasant. As a result, my children have taken fewer lessons than I would have liked … and it shows.

Will is a better sport now, but still wants to go swimming if the other kids get to. (I know. He’s so unreasonable!) The one time I took him to watch the kids practice; he took off his shirt twice and tried to jump in the pool. At which point we went outside and waited in the car for it to end.

What’s the most surprising thing about swim team? Well, Lizzy and Bri want to do it again.

Book Recommendations for Adolescents

My brother asked for some book recommendations. I’m racking my brains for books I liked. I'm a voracious reader but after a while they start to blend together. I started reading books for adolescents a couple of years ago when I wanted to know what Bri was reading. I've really enjoyed it. There are some great series out now for kids that I, too, wait for the next book to come out.

I'll start with these and try to remember more. Add any recommendation you have for me.

The Ranger Apprentice Series: Fabulous adventure series!

Underland Chronicles: Set under Central Park. It has a whole civilization with giant rats, spiders, bats and people. Bri, Jake and I loved it.

Wardstone Chronicles: Spooks defending people against witches, etc. Warning this one is dark and a little scary. Bri and I liked it, but the second book scared me.

The Shamer Series by Lene Kaaberbol. Fun books with a female protagonist.

Shadow Children Series: Anything by Margaret Haddix is good.

Uglies Trilogy:

Spiderwick Chronicles

Percy Jackson and the Olympians

Holes and Small Steps

Charlie Bone Series

Books I loved as a child:

Chronicles of Narnia

Tuck Everlasting

Witch of Blackbird Pond

Anne of Green Gables and the rest of L.M. Montgomery’s books

Where the Red Fern Grows