Thursday, September 27, 2007

There is a cure for Autism!

...or so Jenny McCarthy claims in her book Louder Than Words.

The back cover of the book states that if someone you love is diagnosed with Autism, this is the first book you should read.


If someone you love is newly diagnosed, this book will scare the SHIT out of you! Do not read it until you are fairly comfortable with the diagnosis!

Louder Than Words irritated me for a number of reasons. I got the first bad taste in my mouth from the book's introduction by Dr. Jerry Kartzinel, where he states:

"Autism, as I see it, steals the soul from a child; then, if allowed, relentlessly sucks life's marrow out of the family members, one by one. It relegates every other "normal" think to utter insignificance."

For sure something I'd want my child's pediatrician to tell me.

So, Jenny goes on doing everything in her power to "fix" her son, Evan,- as all of us moms would...right moms? Moms? You do want to fix your broken baby... right? Why are you all looking at me like that?
See, Jenny seems to think that there are categories for moms. You either fall into the category of the "I'll try anything if it will help my kid recover"mom, or the category of the "woe is me" mom, who doesn't believe in alternative treatments, doesn't want to hope, and may actually like being in the "victim role". Hmmm...I wonder which one I fall into?

Moving along...Jenny is so badly wanting to write this book as a typical mom, to other typical moms. However-she is not a typical mom...she is a celebrity.

Let's see...
She buys a heart monitor for $5,000 so she can have peace of mind while Evan sleeps.
When she had to take a plane to get to Evan in the hospital, she paid $7,000 for a ride in a private jet.
She enrolls Evan in exclusive programs and bypasses waiting lists because of her status.
She hires an in-home ABA therapist.
She hires a nanny.
She spends $4,000 a week in private therapies such as PT, Music, and Play.
She hires the top neurologist in the nation.
She has the best DAN! doctor in the world in Texas.
She has the best immunologist in the world in San Diego.
She gets funding through Autism charities due to the Autism expense.
The list goes on...

Wow! Sounds just like me! Except I'm broke, and can't provide that kind of "healing" for my son. Oh yeah, and I don't have connections to get me into the "top docs" or bypass the waiting lists out there. And I don't have the convenience of a nanny or in-home therapists. And that I've tried to get "assistance" and funding, but I'm told all too often that I "make too much" (at $29,000 a year). Funny...I didn't know I made more than Jenny McCarthy.

I'm not saying Jenny is a bad mom, I think she's a great mom actually. I'm just saying she's not exactly what you would call typical. She also claimed to have no resources. Right.

All the talk about treatments, broken children, drugs, and the time frame for recovery, is scary stuff- especially for a parent who has just received a diagnosis. It probably was best, the things Jenny and Evan went through. She admits that she didn't accept her son until he was considered recovered. Once she did though, she felt as if a weight had been lifted.

Some people have difficulty accepting a disability. If it's not typical, it must be broken-we have to fix it because it's not good enough like this. If a parent cannot accept their child as is, sees the child as inferior, incomplete, or in need of repair, the child will know that. That child senses that they are deemed something is wrong with them. Again, I'm not faulting people for feeling this way, but here's my point- In these families, I think it is best to seek out any sort of "recovery" you can. The bottom line is that a child has to feel a full part of the family, like a complete person, and have a healthy attitude toward life. If people need "recovery" to be able to accept their child, go for it.

I accept my son. He is a gift. Autism is a part of that gift, and not a part that got damaged. It's a part of him- and I love who he is, Autism and all. Is it an easy road for me? Hell no. Is it a journey worth making for him? Hell yes.

Monday, September 24, 2007

First award evah!

This award is for those bloggers who are nice people; good blog friends and those who inspire good feelings and inspiration. Also for those who are a positive influence on our blogging world. Once you’ve been awarded please pass it on to 7 others who you feel are deserving of this award.
Thank you mcewen!

This is the first "award" I've ever gotten, and truthfully, I really don't know what to do with it, or even know if I posted it correctly- Nonetheless, I am shamelessly flattered! The irony is that I get much inspiration from mcewens blog- you should go there and check it out.

I don't know if I have 7 people to pass it along to that haven't already been named, but I'll give it my best:

MOM-NOS was the first "Autism blog" I came about. Her writings about her son, Bud, reminded me so much of what I'm going through with Jaysen. This was the first time I realized that I was not alone.
Kirsten has one of the funniest blogs I've come across. She is my daily dose of humor when I need it.
Kristina (yes, technically it is cheating...) but this site is more about Kristina's adventures with her son, Charlie. I love her other site Autism Vox, but she was already nominated through there.
Kev - This guy makes me think. I have to be in the mood to do that.
Kate is one of the strongest women I (don't) know. This woman writes beautifully from the heart, about loss and moving on. Her journey is amazing.

I know there are more, but I have to blog at work, and it's almost quittin' time! Thank you to everyone who stops by to read my (sometimes) mindless drivel. You are all the best!


Thursday, September 20, 2007

Axe the Ex.

Ex came over last night to see Jaysen. It was his usual "once every couple of months" visit- which is a problem in itself.

This time, he called the night before saying he and Girlfriend will be by around 7:30-8:00p ish. 'Scuse me? I don't think so. I explained that it is a school night, and the importance of Jaysen's bedtime routine. I was booting him at 8:00. If that meant he showed up at 7:00, they'd have an hour with him. Show up at 7:45? sorry, but ya got 15 minutes.

I've become quite the hardass these past few weeks. It's really starting to bother me that Ex thinks it's cool for him to pop in and out of Jaysen's life when it's convenient for him. It bothers me that he has not once come up with any support, or help, in Jaysen's care. It bothers me that Ex can't come over without Girlfriend (who has the car), and Girlfriend calls the shots on where they're going (She wants Mexican food? Fine. Get it before you come over 'cuz my kid won't eat it. Oh, you're going there anyway 'cuz she really wants a vegetarian taco? Is this about Jaysen spending time with his father, or about your dietary needs? Kay- phear the wrath). And it really bugs me the most that Ex has not (nor wants to be) involved in any of the Autism aspect of his son. Yeah, he bucked up when another kid called Jaysen "weird", but he bucked up to an 8 year old. Nice. It's to the point where he doesn't even know how to interact with Jaysen. *end rant*

Anyway- they show up at 7:00 and whisk off to Burger King. 8:00 comes. 8:00 goes. Ex is probably thinking " can't boot me if I'm not there". I call his cell phone. He assures me he's just around the corner. They pull in at around 8:30 (that must've been a huge corner).

I inform Ex that he may now give Jaysen a shower, and prepare the child for bed.
"He doesn't want me in there" he says.
"Oh? Well get in there and make sure he bathes."
"But he told me to get out."
"Well, looks like you're going to have to figure something out, huh?"
Ex re-entered the bathroom only to turn right back out, followed by a sopping wet Jaysen.
"He says he's done."
(Good lord...)

Jaysen now is wound tighter than a drum, bouncing off of the walls. It's playtime at Chez Jaysen. I roll my eyes at Ex (who is still tickling Jaysen while telling him it's time for bed in the same breath) and try to get Jaysen settled. Epic fail. Ex and Girlfriend scram, leaving me with a hyper feral being, who only resembles my child physically.

Taking my own advice, I realize that resistance is futile...he watches a movie and goes to bed. At 11pm. Thank you Ex. Love ya. Idiot.

Monday, September 17, 2007

Power to the patty.

If you're a reader of this blog, chances are you're familiar with my son's eating habits (or lack thereof).

To recap, these are the foods that Jaysen will eat:

Pepperoni pizza
Macaroni-n-cheese (Kraft only)
Chicken nuggets
Grilled cheese sandwich
Fruit snacks (but not the ones with 100% fruit)
Dry cereal (some)
Cookies (some)
French fries (the fast food kind)
Goldfish crackers

Needless to say, packing a "healthy" lunch so I at least look like a responsible parent, is difficult.

However, last Thursday, Jaysen came home with his lunch untouched. I thought it was odd that even the "good stuff" was still in there, but thought that possibly he got in trouble just before lunch, and his refusal to eat was a protest, or whatever.

The next day, Jaysen comes home again with a full lunchbox. Hmmm. Should I bite? Okay- I'll bite.

"Jaysen, did your lunch today?"


"What did you get?"

"Hamburger and french fry stars." (It was "Spongebob lunch day, with 'Crabby Patty' burger and 'Patrick Star' fries)

"Um Jaysen?...Did you eat it?"

"Yeah. (big pause) I didn't eat the bread, but I ate the sausage."

Whaaat?!? *Screeching brakes inside of head* What did he just say?!?
I about shat upon myself.

First, of the beautiful sentence he strung together- "I didn't eat the bread, but I ate the sausage". Also... because my son ate a hamburger patty! I couldn't believe it! My son. Ate a hamburger patty! That just doesn't happen! It's like learning that grass is actually a shade of orange. He actually ate a hamburger patty. It was as monumental an event as his first steps. Really.

I decided to quit while I was ahead, and not press the issue. I praised him and mentioned that I bet it was good, and let it be- while inside, I'm dancing a jig of awesome happiness. I'm hoping it was positive peer pressure- wanting to be like other kids and do what they're of those kids has eventually got to eat a vegetable or a fruit...

This morning, I marched into the school office and added $50 to his lunch account.

Forget cake...Let him eat patty!

Friday, September 14, 2007

Feral child for sale.

Welcome to day three of being med-free. In a word?...HYPER! I guess I never noticed that the Risperdal mellowed Jaysen out so much, but he is absolutely back to the high-energy antics he was pulling months ago!

He is now back to dumping the toys out of his toy bin, bringing the bin into the bathroom and putting it in the tub, because he insists on having a "boat".

He is reenacting scenes from videos, including the one from "Alexander and the Terrible, Horrible, No Good, Very Bad Day"...yeah...the one where Alexander's sweater gets wet in the sink? I walked into a bathroom with the sink full of water, 6 soppy shirts heaped on the floor, and Jaysen in action- running by the sink, throwing another in the water and groaning "ugh". Only to laugh and run to his room to get another.

He doesn't sleep. Wants to watch a movie, wants to "make art", wants to line up his videos, wants to check the mail, wants to do anything but get in bed. Last night, I had to make a sailboat out of paper before he would consider brushing his teeth.


As far as the aggression, I can tell that his frustration level is a bit higher- he's getting more easily frustrated, but he has so far been able to handle things better. The frustration is fairly short-lived.

I have decided that I'm going to see how things so before I start him on the Seroquel. If we are able to handle the frustration together, I would feel much better not medicating my son. If his anxieties start to skyrocket and the aggression returns, I may have to change my tune- but for the time being, that is the plan.

He has been getting good reports in school- there was an incident yesterday, where his new parapro sat in on the class to observe him. He started to cry. He cried until his teacher realized he was upset because of the parapro's presence, and she asked her to leave. Awesome. I was thrilled that the teacher picked up on that, and asked the para to leave- when she very easily could have seen Jaysen's crying as a disruption, and told the para to leave...and take him with her. But she didn't. Jaysen stayed in class, and was fine once the para left. Yay- score one for the teacher!

Speaking of his teacher...she just scored big points with me for the above mentioned incident. She also must be doing something right, because Jaysen's not only getting good reports, but he is willing to go to school everyday. However...she has this thing about correcting Jaysen's writing.

I understand that when he slants his "g" (like in the Baby VanGogh title), it is incorrect, and yes, that should be called attention to. My gripe is that she's correcting things that aren't wrong! Jaysen makes his fours like this- 4. That's not incorrect! In fact, that's how it's written on the worksheet he was working on! That is a four! But she apparently wants him to make it with the "L and the intersecting line". Same with his eights. He makes an 8 out of two circles. So do I. She wants him to make it with one stroke like a figure eight. What the heck does it matter?!? They're not wrong! Crap- it might give her a heart attack to know I cross my sevens!

I brought it to her attention once, that Jaysen learned to write very early (at 2 and a half), due to the Hyperlexia, and that is how he has always made those numbers. She never gave a response, so I assumed she understood that is his preference to make the numbers that way. Nope. He's still getting work sent home with the same corrections. Is this something worth calling a meeting? I don't want her to think I'm picking on her, or think that I think she's doing a bad job...but I also think it's important to concentrate on things that need to be corrected, and not things like personal preference, in order to make the school year as successful as possible for Jaysen.

Advice? Thoughts? Anyone???


Wednesday, September 12, 2007

Still freaking out...

The psychiatrist pulled Jaysen totally off of the Risperdal. Although he could tolerate the lower dose, she is thinking long term, that when he needed the next increase, the TD would come back. Erring on the side of caution is why I like this lady.

She wants to try Seroquel in about a week, to be sure the effects of the Risperdal are out of his system.

Researching any drug is scary...Seroquel apparently has a sedative effect that's pretty powerful. I voiced my concern that Jaysen would be "zombified", and reduced to a shell of a kid, drooling on himself. She agreed that that may in fact happen (though not to the extent that I described), and if it did, we could try Abilify.

That's when the knots in my stomach became tighter. I realize that medication management is quite a bit of "trial and error" to get the levels right, to make sure the system is able to handle the medication itself, and to see if the medicine is actually helping the child benefit. I don't want my child to be a guinea pig. I don't want to "try this one" and "try that one", while screwing up his system along the way.

The truth is...Jaysen responded well to the Risperdal. He made such awesome gains, and most importantly- he was able to enjoy being a kid again. His anxiety was down, he was able to stop and think about things, and was receptive to communicating expressively and receptively. He laughed, he made jokes, and he was in control. He was living life, and having fun doing it. I wouldn't know how to react if he stopped enjoying himself like that.

I'm feeling very lost right now, and very scared.

Tuesday, September 11, 2007

Scared shitless.

Two nights ago, I realized that Jaysen kept making this "fish lip" face and was smacking his lips.

At first, I didn't think too much of it- Jaysen has had quirks in the past where he would breathe repeatedly through his nose, or make a gutteral sound in his throat repeatedly. Why is the "fish face" different? He kept doing it. He did it for hours. Laying in bed trying to go to sleep, he still did it. He even put his hand up to his mouth, in an attempt to stop it, but he continued to do it.


Med increase...oh shit...oh

Tardive Dyskinesia...

Jaysen has developed tardive dyskinesia as a possible side effect of the medication. It is a "rare" side effect, but a side effect nonetheless. There is good news that it can be totally reversible if caught early...did I catch it early enough? If not caught early enough, it could be permanent. I immediately called the psychiatrist. She told me to drop the dose back down, and she wanted to see him. His appointment is tonight.

I am scared out of my damn mind.

I'm baaaaack...

So much went on over the past week, I'm going to have to break it down in a couple of posts.

I took a brief hiatus to help Jaysen transition into first grade, and I am happy to report that he is (knock on wood) adjusting beautifully! When I picked him up the second day of school, a girl in his class said goodbye to him, then turned to her mother and said, "he's a lot nicer in first grade!". I had to think about that comment at first, but it didn't take me long to realize that it was a compliment. It told me that in first grade...Jaysen was holding it together.

He is in a mainstream class, with less direct support than last year, but more resource support. He is getting pulled for Speech, and Social Work, and his Sp. Ed teacher pulls him to do "above grade level" work. Jaysen doesn't like to be pulled from class (which tells me that he wants to be with his peers), but he also needs the challenge of more advanced work in certain areas like reading and writing.

Once again, I am in love with this school.

I had a meeting with the directer of Special Services for our district, to try to get bus services for Jaysen. Yeah- let's just say it didn't go well. To make a long story shorter, I asked for bus service because although we are in a "walking zone", Jaysen can't be expected to walk to school. Other than being 5 years old (and I don't think any 5 year old should walk, if you can't see the school), he doesn't have a grasp on safety issues, and has a tendency to run.

I was told that bus services were denied. On what grounds? This is where it gets good....

On the grounds that since Jaysen is able to walk, he can walk to school. Because there is no physical limitation, he can walk. I mentioned fatigue. They said he doesn't get fatigued in gym class, he just sits down and refuses to play after about 15 minutes. Oh? That's not fatigue?

They said he can walk with a group of kids if he has to. I brought up that there isn't a guarantee that Jaysen would accept another child as being a "leader", and if he were to run, I wouldn't want to have another child in danger of running after him into a busy street. I don't feel comfortable putting that responsibility on another child.

I explained that because of the language disorder, Jaysen could very well spin into a meltdown when communication breaks down, especially with a group of kids. I was told that his expressive language disorder actually makes him safer than typical kids because he won't talk to strangers. Whaaaat???? My son's expressive language disorder makes him safer from strangers?!?!? I could not believe the crap they were trying to feed me. I would have totally accepted them saying "no services" flat out, but don't give me this bullshit that you actually feel that this 5 year old Autistic boy can safely walk to school.

Needless to say, I ended up losing it in the meeting. They said that we could hold another meeting in 4 weeks. I told them that wouldn't be necessary, but I would let them know if Jaysen developed a physical diasbility and would qualify for bus services.