We were going to hire this guy until....

We have been looking for an outside consultant to help review Zach's program. We were considering a few semi-local people. There was this one dude in Binghamton that I thought might work out. Then I found this article:

How Many Therapies Does it Take to Treat Autism?

April 17, 2009 by Claudia Wallis

Raymond Romanzyck

Apparently more than 400. According to a survey conducted last summer by psychologist Raymond Romanczyk and his graduate students at the Institute for Child Development at Binghamton University, there were 414 different types of autism therapy described, promoted or cited on 16 major websites (including Autism Speaks, CDC, Wikipedia, Autism Society of America). By now, he said in a lively and provocative talk at today’s Mind & Body in Autism conference at Teachers’ College, Columbia, there are doubtless even more. To add to the confusion, the ones that come up most often in online searches tend to be those with the weakest research base: special diets, art therapy and the like. In an evaluation, Romanczyk’s team found that fewer than a quarter of these treatments had any kind of evidence base. The internet is essentially worthless” to families looking for good information on autism treatment, says Romanczyk.

I was not impressed. I rattled off the following response and commented on the website where I found the article:
I highly disagree with the worth of the Internet for a family who has a child with autism. Things the “experts” are not considering:
1) It takes 6 months to get in to an “expert” for initial diagnosis, early intervention is critical, a family needs information in that absence of that professional.
2) You do get an appointment with a professional, and that’s it. You are not provided a prescription or recommendation for treatment options, or are not given specific enough information.
3) You have your diagnosis, and recommendations, but you have no idea how to get the resources you need in place. to obtain said treatment.
4) There are professionals who believe in a one-size fits all approach even though no two children on the spectrum are alike.
5)Professionals want families to only try scientifically validated treatments when so few treatment options are validated, and those options are limited in availability and outcome.
6) Autism is a snowflake disease - what works for one child’s particular symptoms may not work for another. Has anyone considered no single cause/no single cure?
7) How do you create a control group of autistic kids? As the saying goes: “You meet one kid with ASD, you have met one kid with ASD.”
8) I am all about ABA - but without some of the other treatments, we know that our son would not have come as far as he has. It is anecdotal, but these commonly referred to as “alternative methods” are evidence based - indeed we have tried various treatments and carefully noted what appeared to help and what didn’t. We used a risk assessment and studied ARI information, discussed with professional (MDs, therapists, PhDs) before attempting and carefully documented any noticeable affects after starting. We did not notify therapists to see if they would comment on his performance during sessions (blind test). We also sometimes stop a treatment to see if some of the previously reduced symptoms reappeared. Not absolutely scientific, but methodological.
9) There are lots of support groups with an Internet presence and these are sometimes the most invaluable resource to a family.

While the information is abundant, not necessarily concise or sometimes just out and out bizarre, I am grateful that I have Internet access to information regarding autism. We no longer live in the cave age where just to get a doctor to diagnose a child on the spectrum could take years. Judicious use of the Internet is an essential means of information gathering for our family, and if I were to hazard an unscientific guess, countless other families.

I feel the medical and psychological community are sometimes threatened by the empowerment families have that come from resources highly available on the Internet. Please do not tell a family what worth something has. Worth is a highly subjective quality - not a measurable variable on your histogram.

Tough week and still wearing diapers

Potty training has been canceled. This is definitely going to go down as one of the hardest Zach weeks we have had. All seemed OK on his first day - he actually seemed happy. But as the day wore on, and it was just me and him for the rest of the afternoon and evening - I noticed he no longer took interest in any of his toys, he wasn't complaining much, but then I realized he hadn't eaten his lunch. Then he didn't eat his dinner. No bowel movement for my kid who normally goes 2-3 times a day. Then, the worst, he wouldn't drink anything. He refused to wear his underwear.

Day number 2 was one big tantrum, plus no eating, pooping, and worst off no drinking. I was petrified that he could be getting dehydrated. After his first session I canceled the potty training. I then canceled all therapy for Wednesday. This was not going anywhere close to what I anticipated, and I had no idea how to handle it.

After a day off to ward off the trauma, a trip to McDonalds for apple slices and french fries dinally got the kid at least eating. Later on, he drank, from a regular cup with a straw. Still no BM.

This is a key difference between NT and ASD - potty training doesn't work with a NT kid, you keep on trying, ask the kid why not, and move on. Perhaps you decide to stick with it and push harder, perhaps you decide to try again later. Now potty training with a kid with ASD: uh, it doesn't work, and now you have added a whole host of issues plus you still don't have a kid who is potty trained, and he cannot explain at all what is going on. Then the stories of kids who were 15 and still not potty trained came from a therapist. Disappointment, injury, and fear.

This is my life now - no work to run off to so that I can have a little time away from this - to thik in my own head, not hear the crying and tantrums, not stare at his beautiful face and think about him taking a poop, not wondering how I am going to afford all these therapists if this behavior stuff continues.

Zach is still pretty young - 2 and 9 months. However, in order to enroll Zach in a traditional preschool, he would need to be potty trained. So that brings us back to the what are we doing for Zach - a institutional program (school) or a home program (where we can add in a traditional preschool). Monday we go to visit the program we are considering again - this time with Zach. This feels like it could single-handedly be the most important decision we will make regarding Zach's future. I don't know if that is true, but boy, it sure feels that way. I mean it REALLY feels this way.

The stress is so thick all the time, and it is there ALL the time. Everything I am reading is indicating we will get to enjoy at least 3 years of this. Why three years? According to what I have been reading, when he turns 5, we will have a better indication of how the autism has manifested itself. Then the ever present question of where on the spectrum he falls will likely be able to be answered.

At another family gathering this weekend, Zach behaved pretty well. No one likely picked up on what a tough this week this was, although I mentioned it briefly. Lets see how the rest of the weekend goes.

Hope is taking quite a beating lately.

Picnic with the cousins and Potty Training has begun

This week was an OK week for Zach. He is sleeping through the night although he still goes to bed awfully late. He sleeps in late and one of the therapist calls him a teenager because of his sleeping habits. I feel lucky that he sleeps through the night - I just wish we could get him to go to bed on his own.

He met 3 targets this week, slower then the week of 12 targets, but better than 0 like last week. We believe that getting back on his supplement regiment and back in to a more routing schedule has helped.

Had Zach's meeting with the county to review his IFSP - Individualized Family Service Plane. I don't think we requested any changes although I think you know what happened to our respite.

We had a family picnic on Sunday while cousins from Massachusetts were visiting. Zach was shy and sat in my lap at first (make that the first hour and a half) but then he seemed to warm up - even singing several of the words to You are My Sunshine and letting my cousin Karen play with him and pick him up. It was really terrific.

We have begun potty training today. We are basically ambushing the little guy and he hasn't left the second story of our house all day. He also hasn't pooped all day which is extremely unlike him and has me very concerned. I don't think he is getting the potty training stuff yet and actually am pretty frazzled from sitting in the hallway upstairs most of the afternoon and evening. How come it sounded good in planning, but the execution is much harder?

How does a kids with ASD learn to go potty? They have very limited receptive and expressive language and limited imitation skills. It's all rewarding for when he gets it right. That wasn't too often today.

Tris stuff sort of wears me out. Thank God one of the therapists sent me the following message today:

Oh, I forgot to tell you, and maybe it will brighten your day...but Zach was singing a part of the Blues Clues song, and he kept pointing to his head and saying "think...think...thiiink"

Getting taken for a ride and obsessions

We have been waiting for respite services for over 2 months. I was told the turn around time was 2 weeks. I keep on getting the run around. I was told at a meeting the other day we likely will not receive this. I hired privately a college student to help us out for the summer after I was told that if I bring someone to the agency that they could have her on their payroll within 2 weeks and could offer her services to us for a few hours a week. It has been 8 weeks, they have had this poor girl jump through every hoop their could be (fingerprinting, interviews, TB testing, paperwork) and I still have yet to hear anything despite several contacts.

For those of you who are in the "thank God I don't have a kid with a disability" camp - please realize that when you think a family that has a child with a disability receives assistance - that they probably receive SOMETHING - but not was is promised and that they likely have to yell and kick and scream to receive what they do. This isn't always the case of course, but it is more the rule than the exception for the anecdotal evidence I have seen. I can remember driving by a child in the neighborhood who is wheelchair bound and thinking about who helps bathe the child and all the other tasks. I remember thinking that they probably get a lot of help - and they may. I wonder if Zach's issues were more physically/visually manifested if that would help us to get help. Sort of reminds me of a rape victim who doesn't fight back and doesn't get bruised - does she receive the same pity as one who gets the snot beat out of her. Should their be a difference?

Anyhow - Zach's progress has slowed again - we are attributing it to the lack of consistency in schedule since one of the therapists has been out quite a bit lately. This therapist initially had taken 8 days vacation. Now, the poor girl's house caught on fire while she was away, and she is dealing with that situation. This is a huge impact on Zach. I have had the private therapist coming twice a day to help keep the hours up. Zach just loves Ali - I mean seriously loves her! She told me she thinks he has a crush on her. While he is not meeting some of his educational targets, his behavior is absolutely outstanding when she is around - great eye contact, he engages with her, and has little if any transition issues from being with her and then being with me. I just don't want this girl to leave. She has the Midas touch with my boy.

He is saying "bye", "bye-bye" and "goodbye" on his own now. It is funny how he doesn't use just one phrase. It is also funny when he uses it when a therapist walks in the door - as if to say "go away".

For the past few weeks, Zach has become Thomas obsessed once again. he wen through this awhile back. He doesn't just want to watch the videos, or play with his train sets, he walks around holding his trains wherever he goes. I noticed his interest in his baby blanket has diminished quite a but when this obsession hit, and am wondering - could this be his new transition object (also known as a lovey)?

Working on riding his trike, trying to get him to gesture for "yes" and "no", and next week may commennce the potty training. So that is what is on the docket for now. Thanks for reading.

Long Time Between posts

Having a bit of a hard time - so haven't been able to post a lot. Too many transitions for me to handle right now.

Fireproof and High Flying Without a Net

WARNING: This post is personal and does not track Zachary' progress. Feel free to skip it if you are not interested or embarrassed about the content.

Fireproof - the movie. I watched it, Steve didn't. I kept on hearing what a great movie it was. This movie wasn't quite the inspiration I was hoping for.

What is Fireproof? It's a Christian movie starring Kirk Cameron from the 1980's TV show Growing Pains. Mr. Cameron plays a fire chief in a failing marriage, primarily due to his own neglect, who is guided by his father to attempt a 40-day experiment designed to teach the meaning of marriage commitment. The experiment consists primarily of performing a series of unselfish tasks each day.

You were only shown a snippet of these tasks. They refer you to a website for further information. If you go to the website, you are then referred to various products - buy these books, buy the DVD, buy the soundtrack, how about a t-shirt? No where that I could find is the content of this experiment. One must pay to get this. What a terrific marketing idea. It felt very contrived to me. And not particularly Christian.

I have little issue with the theme of this movie - in fact, with the trials and tribulations of our marriage, I was seriously hoping to see or hear something that I could take to my own marriage. Unfortunately, there was very little that way. I was well aware of the basic concept of performing tasks for our spouse without having something in return in mind. Guess I gotta buy the book.

The first real issues that Steve and I ever had in our marriage came right after the birth of Sophia. What a surprise right? It was a really tough time for us and for me personally. I found the transition to motherhood, particularly of a colicky baby, very difficult. (One of the reasons I promote for couples not to wait until their 30's to have children since I believe that I was really set in my ways which added to the difficulty of becoming a parent.) I was very angry with Steve - and if I rattled off my complaints, many of you would likely agree I had just reason to be. But being right isn't what I wanted. I wanted to be happy, and being married to the man who was the father of my children is important for me to be happy. I thought of the difficulty Steve was having of becoming a new parent. He likely had his own list of complaints about me.

This movie had some great content in it - I like the main character's work ethic, the fact they showed how pornography can affect a marriage - and the most realistic scene was of good ol' Kirk blowing his top at his wife. But he was made to be such a villain- where as the wife's transgression of becoming involved with another man was not quite put in the same light. This didn't make sense to me.

One of the things I found inspirational had nothing to do with the screenplay. I read that Kirk had his own wife dubbed into the portion of the movie where he is kissing his movie wife because he doesn't feel it is right to kiss another woman. I thought that sentiment was more endearing than some of ideas in the movie.

The movie did move me - but in ways I didn't want it to. I could not stop thinking about my father and how much I miss him when I watched it. Dad was a Syracuse fireman. He didn't talk about his job much, in fact, now that I look back, he didn't share a lot of personal information about himself to anyone. There is so much I don't know about him, that I wish I had the chance to now. I was so young, foolish, and selfish - I never asked. I theorize that some of the things I wanted to know would be difficult for him to talk about. Was he ever involved in a fire where they lost someone, maybe a child? What was his mother and father like? Was it hard to start your own family so far away from your extended family? Pops was from Georgia.

With Mom being sick and all that is going on with the kids, I realize there is no safety net in our lives right now. The honest and not so pretty truth is that Steve and I feel abandoned. We are flying on these trapeze and if we fall - splat. That's what parents are supposed to do for their kids, be the safety nets of security, even if it is just in presence alone. I need my Dad so much. He had a way about him, indescribable other than to say you felt loved. As a teenager, I could have rattled off a list of faults of my folks in 3 seconds flat. But if there is one and only one thing I know about them, it's that they were always there for me. Mom still is, despite her body failing her. I still need my dad. My kids need to know him. I miss him so much.

I can almost see Pops walking in the house knowing of Zach's special diet, carrying bags of groceries after cleaning out the gluten free aisle at Wegman's saying with his southern drawl "where's that boy". I can see Zach running to him saying Papa and smiling the biggest smile and giving him the biggest hug. I can see my Dad getting Zach to say words that none of us can because Pops just had a knack with kids. I saw my Dad with my nieces and nephews - I know how much he loved them. I want that for my kids. I hate how life is so freaking unfair. I hate that some of the things I want most I will not have in this lifetime. I hate that my heart is so heavy that I am lifeless, depressing and depressed, and stalled at getting anything accomplished for anyone. If he was around, could he help get me out of this rut?

He was a six foot three fireman - and he drank tea, and cried like a baby over anything regarding his family. He had a temper and loved food. He loved his grandkids and dogs. He liked sports and to drink a beer now and again. He loved grocery shopping and getting a deal. He converted to Catholicism as a surprise to my mother, and made each of my brothers-in-law state they would raise their kids Catholic when they asked for my sisters' hands in marriage. Sometimes when he laughed, and his accent really got strong, I couldn't understand a word he was saying, but he would get me laughing too. He knew when I was upset before anyone else, and would sit down and talk to me about it. He would tell me when I would fight with my mother that she was a good woman, and even though I was mad at her, I needed to love her, because she loved me more than I would ever know. Being a mother now, I get it.

One thing that autism and death of a parent have in common, is living with loss. Some people get over their loss easier than others. I still hurt when I think of my father. I have never become accustomed to him not being around, I have just become accustomed to the empty feeling I feel without his presence; living with a hurt so bad that once in awhile it still overwhelms me. Autism is something we are living with too - an overwhelming loss that you never get used to and that once in awhile creeps up on you, you feign that you know what you are doing, force a smile to not let them know you really want to cry, and you realize you are lost and trying to figure out what the heck to do. This moment passes, but don't worry, there will be another.

Having limited family connections is hard - the kids only get to see their Babcia Boulware regularly - usually once a week. We don't have grandparents that we can drop the kids off too. I feel more like those people I know who don't live near their families than like a person who has moved back to their hometown. I know people who have no support from their families for various reasons. This makes me so sad. It is just not the way it should be. I also know people who have these fantastic families - whose parents and siblings help out. I get so jealous of these people.

But this is the hand we have been dealt. If my Dad were here, I feel like it would be a lot easier to figure out. I feel like I could handle it. But for now, I will put my smile on my face, and just keep trying. Marriage is tough - but I really want it to work. Risk is something Steve and I usually avoid at all costs - but now it is time for us to learn risk management - what is worth attempting and isn't.

Nothing in life is guaranteed.

Double Ear Infection

You guessed it - poor little guy has an earS infection. He is dealing OK with it. He is not running a fever. I am reluctant to give him antibiotics, and his current level of infection isn't severe enough to warrant them. Off topic for a bit - why must antibiotics contain both disgusting flavoring (making it impossible to mix in with anything so he will take it) and artificial food coloring (which possibly contributes to allergies, sensitivities and behavioral issues yet poses no functionality in the efficacy of the drug)?

He still is not doing great with his therapist #1. Very disheartening. We are 3 days into the week and have accomplished no targets. Compare that to the 12 from last week. This is not making me happy. Is it the break he has had from the one therapist for 8 days? Is it the ear infection? Is it some other meaning. So sad. Feeling low energy.