Bottlehead - I am such a bad mommy

So, cranky tired sick kids are no fun no matter who you are. As we frantically searched for Zach's bottle, Sophie whined to the point that I thought my ears were going to fall off my head. And then it appeared. And Sophie whined some more - and rather than save her from her distress, I did what any reasonable unloving mother would do - I grabbed my camera and took pictures. Zach's bottle attached itself to Sophie's hair. Babcia Morphet and I laughed. I mean really laughed. Poor Sophie. I think we are setting her up for a life in politics, just like the Clintons did to Chelsea.

Anyhow - good news - Zach said a few words - he said "moo", "baa", and pretended to snore. We are so excited that he said these few words again - we haven't heard them in quite awhile. HURRAY ZACH! Go Z Go!

Volcanoes and Stones

So Zach is still running a fever - got up to 103.6 this afternoon. I hate seeing him like this, his already
quiet self near catatonic with fever. No words for too long now. I keep on thinking that they (the Yale psychologist and the local developmental pediatrician) said this would only happen once.

But we still have to have some fun around here. The other day - prior to fevers et al, we made a volcano out of playdoh and did the ol' baking soda/vinegar lava trick. So this is not something that is in the books about appropriate play for kids on the spectrum, especially at a young age - but he loved it nonetheless. It was fun to watch him giggle everytime Sophia put the vinegar in the pink tower of playdoh in anticipation of the bubbles that would soon overflow.

I keep on thinking back to the GFCF diet and how Zach used to have volcanic erruptions himself, and how the doctor told me this was normal. Everyone who witnessed it knew it was pretty excessive even friends with kids who had reflux issues. And I was just reminded a few weeks ago of how frustrating this was - how at a cousin's wedding in the fog of embarrassment of Zach yacking right next to the bride and groom's table - as the bride and groom came running to see if they could help I muttered something like: "Just walk away, you don't want to see this." Not exactly nice of me to say to the bride on her most special day and I don't even recall doing it. I felt terrible that I could have been so rude. But after several months of watching this happen, it had me on such an edge, I am not surprised I was either.

So within a week the GFCF diet worked. He quit puking, gained eye contact, became more verbal, engaged with everyone much more. So why the regression? His diet hasn't changed. I am reading a bit about allergies/food sensitivites and would like to have him tested. From what I read, sometimes stronger sensitivities initially mask lesser ones which end up worsening after you pull the more offending foods. I called a doctor I had heard about on Thursday who would do the testing we needed, but unfortunately, she closed her practice on December 31st. Ohhh no.

Yesterday, a few friends called to check in and see if we could get together. God Bless them! These simple gestures help me to really pull out of the low points. I also realize that God intervenes using things like this. A friend invited us to a gym and movie night)Sophie's old favorite "Finding Nemo" at My Gym - the kids gym and activity place. Sophie had school cancelled on Wednesday and Friday (snow day an teacher's conference) and was really itching to get out of the house. We decided we would make plans to go and that would be some great one-on-one time for us.
Sophie had a blast! And I saw a few mothers I haven't seen in awhile. One in particular, got to talking with me. She began discussing her son's skin condition and how it cleared up once they took certain foods out of his diet. I asked her how she knew what the culprit was - and she said she had him tested. I went on to tell her that we had Zach on the GFCF diet. She looked right at me and asked if he as autistic - and I told her yes. Wow - she was pretty astute. She then gave me the name of the doctor she went to and told me she knew he treated other children on the spectrum. She even had his card with her - and I looked at the address - it's 1 mile down the road from our house!

For those of you who don't believe in a supreme being like I do - I know you are thinking this is all coincidence. I am a pretty logical, analytical being, and tend to feel that way about things too. But I can tell you, that in my heart, this serendipity does not feel like mere coincidence, but another stone we are supposed to step on in our path to wherever we are supposed to be going. It may not unlock the mystery, but I am supposed to investigate it anyway, and I will. No stone will go unturned.

Another letter

So, we are still without the necessary services from the county and Zach is running a fever of 103.5 degrees. To those with children, we all know that having a sick child is no fun, a high fever even worse. Add in the complexity of a special needs child who is non-verbal and doesn't understand language - -and all I can say is another layer of heartache. I cannot tell him that he is sick and that it will pass. I cannot tell him that he needs to drink to stay hydrated. I cannot tell him that he should not fight the medicine we are trying to give him and puke it up all over the place, or else out come the suppositories that are only in acetaminophen and don't last nearly as long as ibuprofen. But probably worst of all, he can't tell me if/where it hurts. With this in mind, I have decided that every time Zach gets sick, he will immediately go to the doctor in case of something more serious. There goes some serious amount of time and copays, my friends.

So off Steve took Zach to the dr's so that I could go to work and hammer out a new schedule and deal with several meetings. While at the dr's office with Steve - he yacked all over. Steve was going to ask Dr. N about getting Zach tested for Lyme disease, but amongst the chaos, did not manage to sneak it in. So, we decided, since we think the front office at the pedi's is sometimes hard to navigate, we would send a fax with our request and medical reasoning with attention to Dr. N. Let's see what kind of response we get - Steve is sending it from work as I write this.

In the meantime, I ran into an old neighbor who as part of pleasant coversation, asked about the kids. So I told her. People likely don't want to hear the truth, but I have decided to tell them anyway. Some people probably think I am nuts, but once in awhile I find it worthwhile. And that was the case yesterday. As I explained to her our lack of services (to which she chimed in she was not a fan of Facilitated Communications) I recalled she used to be a school teacher, and furthermore, a school administrator. She was so patient as I told our story, and then she gave me a peice of advice - contact the state department of education and let them know. I realized she was used to dealing with school age or preschool kids, and this would make sense for that. But Zach was only two - and this isn't in the school district's jurisdiction yet. But, nonetheless, her point was a good one; someone at the state level was overseeing this, and they should be notified of our situation - so I skipped my 15 minute lunch yesterday and rattled of the following letter to the New York State Department of Health Early Intervention Program email listed on their website. Make no mistake about this folks, even though I blog, I do no consider myself a good writer - I know I am likely very deficient in grammar and whatnot - afterall, us engineers have never been known for our writing skills. However, all you English teacher types out there - feel free to give me some pointers, as I haved a feeling I will be writing a bunch of these letters in the near future.
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Subject: Availability of ABA services in Onondaga County

Our child was diagnosed with an ASD at the end of November while in Early Intervention services. As part of his evaluation a report was drafted which included the diagnosis and recommendations for ABA type services.

After notifying our Service Coordinator of the diagnosis and providing copies of his evaluation report, we requested ABA-type services. We are being told by our Service Coordinator and the Onondaga County Early Intervention Program Coordinator that these services are not available in our area under the Early Intervention program. They have stated that there are professionals in the area who do ABA type therapy, and he will be eligible for those services when he can be admitted into a preschool program this September. (9 months away)

Frankly, we are extremely surprised by this since both the "Clinical Practice Guideline Report of the Guideline Recommendations Autism / Pervasive Developmental Disorders Assessment and Intervention for Young Children (Age 0-3 Years)" sponsored by the New York State Department of Health Early Intervention Program and the "Autistic Spectrum Disorders Children Under Age 5 Onondaga County Resource Guide for Families and Professionals" both specify that:

"Behavioral and educational interventions are currently the predominant approach for treating children and adults with autism."
and
"It is recommended that principles of applied behavior analysis (ABA) and behavior intervention strategies be included as important elements in any intervention program for young children with autism."

More than two months have now passed since my son's diagnosis. Furthermore, it should be noted that he started in the Early Intervention Program in July of 2008, and has shown no progress using DIR/Floortime approaches from his SLP and only recently began OT services - a total of 2 hours of services compared to the 20 hour minimum recommended in the "Clinical Practice Guideline". We are told by the professionals that time is of the essence in getting our son the services he needs (as prescribed by two doctors) - that we need immediate and intense intervention, yet feel an unreasonable amount of time has passed for not getting these services.

This is a very difficult time for any parent, and is exacerbated by feeling that we cannot give him what he needs. If you feel you could be of any assistance to us or to Onondaga County in helping us get the necessary services for our son, we would appreciate any help you could offer.

Sincerely,

Dr. and Mrs. Steven Morphet

Is your product GFCF? WHOA!

My question:

To Whom it Concerns:

I have a child with food intolerances and would like to know if your product Westsoy Rice Milke Plain, is casein and gluten free.

Sincerely,

Leanne Morphet

----------- THE RESPONSE ---------------------------------------------------------------

Dear Ms. Morphet,

Thank you for taking the time to contact us regarding our Westsoy Product. We apologize for the delay in our reply and appreciate your patience. We strive to maintain the highest quality products and we appreciate your patronage.

We consider gluten to be in the following, barley, bulgur, couscous, durum, graham flour, kamut, malt , rye, semolina, spelt, triticale and any other types of wheat. We do not consider any oat products to be gluten free due to the fact that studies are needed to determine the long- term safety of oat consumption. The issue of cross contamination with oat and wheat remains a concern in North America.

We do not have lists of products that are specifically considered to be gluten free. Reading the label is the best way to check for the presence of ingredients which contain gluten. If gluten is an ingredient it is listed separately and not under "natural flavors" or "spices". Consumer health and safety is our number one concern, and we do not want to provide information which may not be accurate in the future.

The Hain Celestial Group's labeling declares major allergens (peanuts, soybeans, milk, eggs, fish, crustaceans, tree nuts, and wheat) and we follow the U.S. FDA's regulations. In addition, our labeling always declares gluten containing ingredients. We recognize the serious nature of the allergen issue and we strive to minimize risk.

Both major and minor ingredients of all products, as well as all processing procedures and equipment, are closely scrutinized and all potential allergen issues as determined by the Hain Celestial Group are declared on our labeling.

We assure you that strict manufacturing processes and procedures are in place and that all of our manufacturing facilities follow rigid allergen control programs that include staff training, segregation of allergen ingredients, production scheduling, and thorough cleaning and sanitation.

Thank you for your continued support. If we can be of further assistance, please feel free to contact us at 1-800-434-4246, Monday through Friday from 7AM - 5PM Mountain Time.

Sincerely,

George
Consumer Relations Representative

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I have a hard enough time reading all the chem/bio/genetic/neurological research I have been doing lately. Couldn't they just have said yes or no?

Not again....

So, we requested a new service coordinator through the county, specifically, one that was more attune to those who requested/needed ABA type intervention. We were assigned someone yesterday, and she called. I asked her if she had experience with ABA. No. *sigh* I feel like a schmuck that is just going to be viewed as a troublemaker at the county. 9 more months of this.

So I haven't posted as much as I was. I guess I needed a bit of processing time. Zach is no longer speaking again. All the experts told me that a regression only happens once. What is this then? He no longer says anything except "pop" in Pop Goes the Weasel. This is totally breaking my heart. I thought it might just be a short period, and that perhaps he was developing in some other way instead. But after nearly 2 weeks of observing this, I can say that I don't believe so.

It is so hard to keep motivated when there is no improvement. I keep wondering what we are doing wrong. I know that we need to be more consistent at home with what the therapists are doing. Steve and I continue into the evening with working with him - Steve getting him to point at pictures in books, me withholding food items or toys in an effort to make him request the items through gestures or language.

I am concerned that there is something in his environment that is contributing to this lack of speech/language. His eye contact has also greatly diminished, again. Could there be a need for further dietary interventions? (is he possibly allergic to corn or soy or nuts?) Is he somehow still getting casein and gluten in his diet and we are unaware?

Steve says that in life there is no coincidence. Well, the other day when doing my daily research on autism, I came across some information that said there may be a correlation with Lyme disease and autism. As I stumbled upon this information, my stomach felt a jab. Zach had a possible tick "bite" back in the late spring/early summer of last year - just prior to the regression. When I called the pediatrician's office to discuss, they told me that if there was a problem with the tick bite, I would notice a "bulls eye" rash where the bite was. I didn't notice a rash, but it was in his hairline, and may have been difficult to detect.

So, back to work last week after taking a brief hiatus to get my wits about me (that didn't work by the way) , I ran into a fellow employee who I hadn't seen in several months. We exchanged the normal pleasantries and then the dreaded question about how the kids are. Well, I told her our news. I then asked J. about her daughters, one of whom I knew she had some difficulty with. J's daughter has had depression and behavioral issues with no known reason, and lo' and behold, upon a recent visit to a new Dr., they discovered she had Lyme disease. They began treating the Lyme disease and noticed an improvement in her behavior. OK - this is where this feels like coincidence. She was going to give me info. about their doctor and the specific test for Lyme disease that they used since several of the tests administered in typical Drs offices are not sensitive enough to detect older onsets.

Mom took a spill late last week. She was trying to knock down icicles from the roof from within the house, slipped and fell on the sink in the kitchen. She was pretty banged up, with bruising on her abdomen area, and a laceration to her shin. Mom is on coumadin for her blood clot, which thins the blood. Any possible bleeding (they actually request you do not work with knives) is considered unsafe. She called the doctor and they told her what to look for. UUggh. What was she thinking? I am sure this has to be frustrating to her, someone who always kept her house so meticulous not being able to attend to all the things she once did. I wish she would let us help her more. As I called to check in with her a day or two later, we got to talking about Zach. Out of the blue, my Mom mentioned the tick bite, and if that might have anything to do with this. God does not have to send me any more hints - I get it - I'll get this checked out. Now to find a doctor who has the appropriate test.

Sometimes I feel more like detective than a Mom.

Yesterday's crisis, the neurolgist with the engineering background, and a possible pig

Everyone is so tired in our house lately - Steve, myself, my mother-in-law (MIL), even the kids. Constant phone calls, emails, visits, appointments.

I dreaded coming into work yesterday because I am so consumed with all things autism that I feel like I can barely contribute at work. Well, while in a meeting, I received a voice mail. My SLP (speech language therapist) called to cancel the therapy appointments for the day for her and my OT. She said that since we didn't have a signed IFSP she was not able to provide services and that she had consulted with our OT and told her that there was no signed IFSP and she would likewise not provide services.

A little background: an IFSP is an Individualized Family Service Plan and is basically the contract, between the county and the parents, of what services are to be provided and what goals are to be met. We had an IFSP for Zach that started in July. I had requested a re-evaluation (new IFSP) back in October (verbally) and again in November (verbally) and December (in writing). They waited to address the IFSP until it ran out on January 10. The therapists continued coming and all told me they would have to backdate. The county coordinator also told me this. I was fine with this - thinking it seemed standard to them.

So why did the SLP all the sudden make issue of it yesterday? And why did she feel the need to let the other OT know what she was doing? (They work for different agencies) Our SLP knows that we are likely going to discontinue her services soon when a new ABA-based team is assembled. She also knows that I had coordinated for our privately hired therapist to observe both her and the OT with Zach yesterday. (intent??)

She cancelled 45 minutes before his scheduled session. She did not consult the county coordinator about her actions. When I called the county program director - she said a verbal OK from the county would suffice the continuance of the services and to let the coordinator know that the providers had cancelled and needed a verbal OK.

I need some opinions here - does anyone find this to be unprofessional? Does anyone find that what was OK last week suddenly not being OK this week suspicious? I know contracts are contracts, blah blah blah. How come it was OK to not work under contract one week after a week of not working under contract?

I feel that there was some other agenda going on here - and that no one had Zach's interest in mind, and the most important thing: in the end, Zach got shafted. And because of this, I feel anger now that I have never known.

Our new private therapist L. had her first visit with Zach. He cried. That's OK. Glad I wasn't there to hear the crying. I just need to make sure I give her the support she needs because that has to be hard for her too.

We had our appointment with the neurologist yesterday. She is particularly interesting because she has an engineering background (she has a PhD and an MD which is not all too uncommon for a neurologist.) Her resume reads so impressively - BA chemistry Princeton , MS Electrical Engineering Boston, Dartmouth MD and PhD, Fellowship Mayo Clinic). She said she doesn't believe Zach is having seizures, but that she still suggests an EEG. She also said that observing Zach was a bit of a deja vus. Apparently, her own now 24 year old son, had many autistic tendencies as a child like Zach's. He is now in graduate school in Colorado after an undergrad stint at Carnegie Mellon. She said, "Just ad me into your cheering crowd." I love that she gave us that injection of hope that all may be OK. It made me feel immeasurably better after the crazy set of phone calls I had to endure earlier.

So after the neurologist, we went to my mother's for dinner. She had a particularly bad day - the pain is back after her nerve block and she was unable to sleep the night before. However, she a made us dinner of homemade spaghetti sauce, meatballs and sausage that I found an additional comfort in.

The kids had an OK day according to MIL. Sophia had her "wear your pajamas to school day" event which she got a real kick out of. Slowly I was calming, calming, calming.


When we arrived home, Sophie and I read a book. I then pulled out my new laptop to play a game with her. She seems to do much better with the finger board on my new laptop (thank you dear husband for such an awesome early birthday gift) than a traditional mouse. She really engaged playing the game on pbskids.org. I was so excited for her - and first thing this morning she asked if she could try it again. She has avoided using the computer for the most part because of having difficulties with the mouse, although she is fine with the keyboard. I was very excited for her that we found some way to work around this for her, although I still want to work with her and a traditional mouse.

While I was in the office with Sophie doing our cool laptop online-game thing, I heard a bunch of accolades to Zach coming from the family room - and something about the word "pig" (I think). He's never said pig before that I know. I was really excited and happy - although when I thought to ask my MIL about it today - she couldn't recall what he said. We are all so tired, it didn't surprise me that she couldn't recall.

MIL leaves Feb 3. Don't ask me what I am going to do then...

Tired

I just want to sleep and sleep and sleep. Three therapists coming to the house today - I'll be at work, so my mother in law will have to handle - plus taking Sophie to preschool. And then an afternoon appointment to the neurologist with Zach. I am not sure how much more I can handle at work. I have little ability to concentrate; all I ever seem to think about are the kids, autism, therapy, etc. I am totally engrossed in this stuff. I thought work might be a good break for me from the craziness, but I think it is just adding to the stress. They have been nothing short of awesome to me throughout this ordeal, I feel they deserve someone who can really produce, and it likely isn't me. *sigh* We could really use the $$ now with the private therapist thing. I want to go back to bed.

Why in Syracuse is ABA a dirty word? An unexpexted visit

Why in Syracuse is ABA a dirty word? OK, so it only feels that way. No - I can actually say I have witnessed people cringe when I mention it. So, I was wondering is this a universal feeling?

And then we went to Rochester to visit Steve's family for a late Christmas a few weekends ago. I said ABA - and lo' and behold, people nodded and said "oh yeah, I know what that is." No dirty looks as if I was about to administer electric shock to my child. In fact Steve's cousin K. a recent graduate of history from UB who is in a temp job until she starts grad school said she was trained and using it. Steve's cousin C. stated that she had used it when she was working with the autistic years ago and saw how effective it was, especially when it was implemented and consistent at home. There are schools out there. People have multiple resources in Rochester.

OK, so back to Syracuse, since I think the 3 hour commute daily to Rochester will likely make me want to beat my head against the steering wheel, and thus, should not be attempted.

What is going on in Syracuse?

I asked the county program director if we were the first parents to request ABA today upon our first face to face, uninvited, unannounced visit to the county's Special Children Services division. The response was "Your the first in two years."

So, yes, no more phone calls. We went to speak to the program coordinator herself, without calling first. I wanted to hear what she had to say for herself, and not through someone else. There was certainly something to the element of surprise. But it wasn't as if she needed preparation - I am sure she has given this speech before. There were a few strange looks when we entered the building, I made sure to where my high heel boots and professional attire - hopefully, at 6'1" with heels I could have some sort of psychological intimidating effect. They didn't know we were just parents, they may have thought we were some sort of certification or oversight personnel. They were very nice to us.

Much like our service coordinator, this program coordinator tried to deflect the conversation to Zach and his upcoming transition to within the school system. I told her that he would not be 3 until October, and I didn't want to see 9 months of no activity until this event. Talking about the future seems to make these people feel better. I also instructed her that I had already begun proceedings with the school district, to which I was told they were pending a report from the Early Intervention office. Yes lady - you guys are the ones holding up the show - not me! I also told her we were scheduled to visit 2 schools within the next few weeks. OKay -can we put this one to bed lady and get back to the issue at hand.

She says: "Blah blah blah - resource limitations, I'll have to check with my boss," and more idle rhetoric that I shouldn't have to bear witness to and isn't my problem. All I could think about is: "You've had 10 years to get this stuff worked out, why isn't it?"

*** WARNING: some censored vulgarities coming your way ****
We went on to exchange stories about what we thought was going on. Steve said not a word. I could only imagine that if he did talk, he would have told the lady something on the order of "stop the b*llsh*t and quit f*ck*ng with my kid's life." Lord knows that is what I was thinking at moments as I tried to stay proactive, positive, congenial, diplomatic, etc. rather than the straight talk approach I would have preferred.

At some point, the coordinator mentioned a name, as if I should know who it was, of a student in Westhill school district, and "too bad I didn't live there instead of West Genesee" blah blah blah. Off to Googleland I go to see who this kid she was talking about is. As I investigate this young gentleman's life, I frequently come across these words: facilitated communication.

Puzzle pieces are starting to fit together, or is it a connect the dots? I hope to figure more of this out and give you my viewpoint in some follow up posts. Stay tuned...

Made for TV and tings

I had this surreal feeling this evening after interviewing a possible ABA therapist; all of the sudden my life felt like a made for TV movie on the Lifetime network. I can be a drama queen at times although I would like to think this isn't a distinct characteristic of mine.

L. showed up at my door today and as I opened the door - I saw this beautiful young woman standing there with a smile. I know this makes no logical sense, but I liked her right away. She was so-o young - and for some reason I loved that! There was lots of energy and vitality to her, and not a lot of excess baggage.

I was a nervous wreck for the interview as I wasn't prepared and have been a total scatter brain as of late. I like to be prepared for things, and this drove me bonkers. Where were my notes and spreadsheets? Perhaps that is why I liked her so much, she seemed as nervous as I am. We talked non stop for 2.5 hours. Steve likely wanted to bat me in the head as he said very little but had to sit there listening to me ramble incessantly.

So Zach interacted with her a bit while she was here. She saw him and exclaimed how cute he is. I knew that whoever met him would think that - so far everyone has commented how lucky we are to have such a cutie, that it would likely make finding therapists a lot easier. Not a nice fact of life, but a real one nonetheless. Anyhow, he said a new word- "Tings" when requesting a snack of "Tings". Very cool - since we really didn't work a lot on it. Maybe he was showing off in front of the hot chick? LOL

Zach has been receiving services for almost 7 months, and for almost 4 months we realized his dx. I want something to start happening NOW. Enough waiting for everyone else to get their act together.

So, she can start immediately and I asked her if we could start Wed. We're on. This doesn't give me much time to verify references, background checks, etc. I know. But I have professional references for her - 2 from professionals in the field, 2 from families she has worked with and will verify as much as I can before she starts. Not to mention, she will only be here when someone else is here. My instincts say she is good - and I can say that my instincts are generally very good. Let's hope I am right.

Yet another blow and Imagination

So, today, a day that many have off as a holiday, I spent with 3 therapy appointments (OK - 1 cancelled and rescheduled for Wednesday) and a special ed. playtime that was a little too busy for my liking because many of us brought extra guests (other children, spouses, etc.) due to the vacation. Zach spent much of the class spinning around in circles, while I consoled Sophie as she didn't understand why none of the children were particularly good at sharing. One boy (maybe Downe's Syndrome) in particular seemed to want everything she was playing with and his parents were not the most attentive to his behavior.

We came home and Sophie insisted on watching Willie Wanka and the Chocolate Factory for the 5th time in 16 hours - yet another surprise gift by a terrific friend who has a lot on her plate with 3 kids under the age of 4 and a husband whose job takes him out of town a lot. We are so lucky to have such great friends.

Sophie's OT, who has been doing a great job with her, had a talk about her recommendations with me today. She believes Sophie is going to continue to require services if she goes to kindergarten. This will likely require a diagnosis of some sort because school districts usually require that in order to provide services (I believe that is a federal law - but am just looking into it.) I am wondering what kind of dx she would receive. The OT seemed to indicate that Sophie is not always the most socially aware - that other children in her class were sometimes confused by her behavior, and that she at times appeared to totally ignore the other children's requests and end up going off the play on her own when she didn't seem to understand the requests for mutual play. This is of course sending off flares to me as someone with a basic understanding of ASD criteria. Could Sophie have some sort of high functioning ASD? You gotta be kidding me. She is very bright, verbal, social, but yet has some obvious and frequent sensory issues, doesn't always appear to hear what I am saying, and doesn't understand some basic social rules or context. The OT will be calling the Special Ed. office in our school district to discuss. I had a brief discussion with Steve when he came home from work tonight, although I didn't mention the vague possibility of ASD, particularly PDD-NOS.

A recent situation has me particularly concerned: recently Sophie got into one of her moods and was very active. I encouraged her to jump into her bean bag chair to get some crashing out of her system and some pseudo-deep pressure. Well, she seemed to get even more spun up. At some point, I lay near the bean bag trying to ensure she wouldn't get hurt. Dumb dumb dumb dumb. Next thing you know she lands on my head, and I felt a crunch on my nose. There was blood everywhere. As I ran to the bathroom and called to Steve for help I thought - "she broke my nose for sure". Steve ran up to the bedroom and saw the blood everywhere. After he checked on me and got me ice, he began the massive cleanup. While cleaning up, Sophie said to Steve "Momma better not have gotten blood on my bean bag." I laugh at this now, but the lack of empathy/sympathy certainly does have me concerned.

Sophie has always had some strange obsessions and behavior. But what kid doesn't? When she was a toddler, her favorite toy were sticks. Anywhere we went she would pick up sticks and play with them. I recall a few neighbors commenting on Sophie and her sticks. She still has a thing for sticks. She evolved it a bit into straws for awhile: we would go to a restaurant and mandate from the waitress as many straws as she could finagle for herself. I remember Sophie insisting from a friends mom on a playdate for an orange straw that she recalled from prior visit. During all these evaluations with Zach we were constantly asked if Zach played with toys appropriately. He never seemed to do really strange things. When I asked them to define what this meant, I was surprised to realize they were describing much of how Sophie plays with her toys. I still think that some of this is bonk and that children who play with toys or non-toy objects as toys are merely more imaginative and creative - and I like it! This is how inventors are born. However, at Church Saturday night, I observed as Sophie separated and rearranged, several times, the monthly missiles with the music issues. She lined them up in 3 different configurations until she settled on one she appeared to like. I had never noticed this behavior before until I thought back to Sophie as a newly walking toddler getting into my pots and pans. I recall how she lined up the tops of my All Clad lids in sorted fashion from smallest to largest at just a bit over a year old over and over again. I remember thinking - wow - that seems sort of advanced or weird or something.

So now, I will likely try and get Sophie into the developmental pediatrician as well. A hearing screening is also likely in order. All because I noticed she wasn't writing well a year ago. *sigh* I thought I might be overzealous because of Zach - but I have had 2 professionals acknowledge that something is going on with her. I am contemplating some dietary interventions for her as well. Right now we are doing an OT brushing technique with joint compression, using chewing tubes to control oral fixations, and supplementing with fish oil. Some of you must be thinking I am a nutcase by now. No harm, no foul is my motto. Sophie is an incredible kid, and most likely most of you who know her are probably thinking that there is nothing going on with her. Alas, I am not overly anxious about her right now, however, I can certainly say that there are many people out there, professional and not, that would likely say she is certainly unique and has some interesting features. Boy do Steve and I have some crazy genes.

Meeting with FEAT

So on Friday we met with someone from the CNY chapter of Families for Effective Treatment of Autism, one day after our meeting with the county to discuss services. B. was kind enough to come to our house on our schedule (she has 3 kids of her own, 1 with ASD) and meet with me. She took a brief look at Zach's Family Individualized Family Service Plan (IFSP). She basically told me we should me that are IFSP looked inadequate to meed the needs of a kid with a dx of ASD, which I knew. She called an advocate to give us advice on what we should request based on our dx and Dr's recommendations.

B. also had references of therapists in the area - most of which I had already contacted. She indicated that one therapist in particular, although not completely certified, would likely be a great match. The best therapist in the area, was already booked (B called her to see if she was interested) and she said the young woman I was to interview on Monday was likely the 2nd best qualified in the area. For some reason, this out of all the news made me feel somewhat relieved. The young woman seemed nice on the phone, and eager! B. indicated that this could be our Bridget as a reference to "Let Me Hear Your Voice" by Catherine Maurice.

The other good news was that through FEAT, we may be able to get some funding assistance. By my calculations, Zach's therapy could cost us as much as $20,000 a year. This is better than I had read about, but still nothing to sneeze at. Anything we can get will be helpful - otherwise kiss my retirement fund bye-bye. Ahh ... who's kidding, I am never gonna retire anyway.

A glimmer of hope...

What helps us stay afloat?

What is helping us deal with our issues?
First off - a call from a fellow more experienced parent of a child with ASD who says she will come to the house to give us a hand.

Second - a call from a girlfriend who wants to come for a visit knowing how nuts things may be around here.

Third - a present - a HUGE unexpected present for Zach that made me cry it was so awesome.
Uncle Ron and Aunt Gail really blew us away with all the great Thomas the Train videos. I am afraid I likely confused the kids as I told Sophie I was happy when she asked me why I was crying.

Fourth - our new washer and dryer - a present from Steve's late Grandma Helen.

Fifth- Joe's safe return from Afghanistan!


Sixth - Zach's terrific smile.

Seventh - Sophie and me getting to spend the day together at her preschool.


Eighth - my mother in law extending her stay and helping us out so much. Plus the unexpected offer on her home that she accepted. Let's say a prayer that the contingency is met (the buyer needs to sell their home.)

Ninth - my mother having us over for dinner of homemade galumpki.

Thanks for all those simple things.

More picture can be found at: http://picasaweb.google.com/boulygirl/Jan15#

Elitism

So, before Zach and Sophie were both diagnosed with disabilities, I was like a lot of folks out there that think things like this will likely never happen to me. My family, not Steve's, had no incidence of anything regarding learning disabilities, mental illness, physical disabilities, let alone retardation and autism. Steve and I were highly educated people, in the sciences nonetheless - PhD, MS, etc. We were into health and fitness, we ate organic foods, and ran 1/2 marathons, moderate alcohol consumption, never touched an illicit drug in our lives. We took supplements and went to the doctors regularly. I avoided mercury laden fish during my pregnancy, and blue veined cheeses, no cold cuts. So how after all this did we end up with two kids with issues?

The fact is, statistics happen. Random genetic things happen. We were elitist to think that it wouldn't be us. The fact is, that we were afraid of autism. A study conducted at Cambridge indicated that among the children of engineers, autism and related conditions are found twice as often as in the general population and was reported in the IEEE magazine I have a subscription to back in 2006, right before Zach's birth. A neighbor of mine once cracked a joke about it to me. Wow - if she new what happened to us, eh?

I have always had a sense of karma, even though I am a Christian. It is really hard for me to understand that bad things happen to good people. I feel guilt for all my sins, and often wonder if they culminated in the system of life to add up to one big kick in the pants.

Some people have remarked that I sound depressed. I want to clear up this issue right now - I am! But not because of Zach's diagnosis. I enjoy Zach very much and have fun with him. Problems in getting him what he needs feel so insurmountable at times, that my energy level is greatly diminished. We are 4 months into realization he has ASD, 7 months into services, and I just want to see some progress. I spend every waking hour (and there are lots of those) trying to figure out what to do next, researching, making phone calls, sending emails, going to appointments, therapy sessions, and trying to maintain some semblance of a normal life for the family. This is not normal. It is a marathon.

I am grateful for the opportunity God gave me to truly sympathize and understand what complete pain and complete love are. I never knew, although I thought I had an idea. I feel for those parents whose children don't smile like Zach does, who don't want to be touched, who hit their heads against walls or floors. Or what about those kids with physical illnesses and disabilities who may have only a short stay here on Earth. Zach is a terrific kid and has joy in his life. That is all any parents should ever really want for their child, anyway. So for those of you worrying about your kids and if they will get into that college with the best program, or will take a medal in the swim meet, or will get the lead in the school play, RELAX. It aint about that stuff in the end, I can assure you. It is ego, it is elitism, it is foolish, and worrying about those things will never bring you the joy in life God intended.

Blissfully ignorant

Before I had children, I had my nieces and nephews. In loved them all so-o-o much and they brought great joy to my life. I was 12 when I became an aunt - and it was almost like having a baby sister more than a niece in all honesty. I loved taking them places, going to the park, going to the pool, the museum, or having sleepovers. As much fun as this was, I knew that all this fun is not what parenting was about. I saw that it was work - how much work I would not realize, of course, until I became a parent myself.

When we moved to Camillus, we noticed someone else moved into the neighborhood around the same time. They had a child in a wheelchair. I can remember the feeling I had when I first noticed him. My thoughts went to how difficult that must be for the parents - but then they seemed so joyful when they were out playing in the yard with all three of their kids. It took my breath away.

I noticed for this family, a bus coming to pick up the child. I had heard of No Child Left Behind and Americans with Disabilities Act, and assumed that they must receive some help. I didn't know what that was. When Zach was first diagnosed, several people said how lucky we were to live now, that there were all these things available to him that weren't before, that there were services, that there was help. I believed it too, especially when everything seemed so insurmountable, it was the only thing keeping any hope going. Pop went that bubble this past week.

Zach's two dx's and recommended treatments indicate one-on-one ABA therapy. In 1999, the Surgeon General indicated that "Thirty years of research demonstrated the efficacy of applied behavioral methods". Yes folks, it has been around that long. The New York State Department of Health Early Intervention Program (1999) Clinical Practice Guideline Report of the Recommendations for Autism/Pervasive Developmental Disorders. New York State Department of Health, recommends a minimum of 20 hours of ABA a week for autism. The Onondaga County Autistic Spectrum Disorders Resource Guide for Families and Professionals lists ABA as "the predominant approach for treating children."

So what were we told at our 6 month review/IFSP yesterday? There are no ABA resources for children's Zach's age. She went on to describe various resource issues ("there are no certified ABA therapists in the are" she said although I gave her 6 names), there are no existing contracts with the county with any of these individuals (I told her of one woman who was under contract as a social worker and had ABA certification), blah blah blah. I finally told her that legally, resource issues are not a valid excuse for not providing Zach with the therapy he needs. She went on to say, "well what you want, we don't have. " To which I replied something on the order of - this is not about what I want, it is what two professionals have prescribed for him, and the very manuals that you have provided to me recommend. I asked her if the onus was on us to provide these things - to which she quickly backed down.

I cannot imagine being one of these trained monkeys who know damn well what the score is, yet spew their lying politics and rhetoric in the face of people within crisis. If you don't believe in what you are doing, how can you do it? If you believe in the information that you provide for me, than how in God's name do you say it doesn't exist with a straight face?

So no - adequate services are not likely to be provided to Zach anytime soon - at least not on the county's dime. The funny part about this is that thus far - they have not spent one dollar of their money on him - everything has come from our insurance - our $$.

This has got to get better folks.

My baby and "baby" and ABA

So, as I have mentioned before, Zach has shown little progress, and as of late, his speaking any words has really tapered off a lot. I was starting to be concerned that he was becoming nonverbal once again. The correlation I see here is that things have been hopping around here, and I haven't spent time doing a lot of the reinforcement type stuff I would like to . However, yesterday while watching a video with big sis and grandma, after grandma said "baby" when one appeared int he video, Zach repeated it right back. We were so glad to hear him say something again.

So why have we been so busy that we aren't working with Zach as much? Well, first off, my mom has undergone some new things that I haven't written about. Last week, she was taken off her coumadin (used to treat blood clots) so that she could undergo a pain block procedure. Mom has been doing fairly well with the affects of the cancer and its treatment, however, the fact that she has no longer been able to take her arthritis medication because of the coumadin (it's a blood thinner and so are most pain relievers) has left her in a pretty decent amount of pain. Add to this sciatica in both legs, and it has been downright debilitating. My heart aches for her as I see her suffer and know that it has nothing to do with the stinking cancer! At this point, we believe the pain block plus and alternative pain medication that a doctor just discovered for her have given her some relief. Let's hope it continues.

The next business around here has been the attempt to getting Zach the ABA therapy that both evaluations has recommended for him. I have been utterly baffled why this is so difficult. Zach needs ABA. ABA has been around a long time. ABA was recommended by the surgeon general back in 1999 as the best course of therapy for autism. The New York State Department of Health Early Intervention Program recommends a minimum of 20 hours a week of ABA for those with autism. Onondaga County reference it in their Autistic Dpectrum Disorders guide for children under age 5. So why are we told we cannot get it? There are no resources for someone Zach's age, we are told.

So today is the day we meet with Zach's service coordinator to address his Individualized Family Service Plan (IFSP). THE IFSP is supposed to be document and guide and early intervention process. If it aint in there, you aint getting it. So somehow we have to get ABA in there. To me, it sounds like a no brainer. But the pushback is amazing that we have felt regarding this in the various phone calls we have had from his service coordinator and the program coordinator.

Thank God I came across FEAT - Families for Effective Autism Treatment of Central New York. We had contacted a professor at SU who is involved in behavioral treatments and she referred us to them. Oddly enough, I had seen references to them in a few books that I had taken out of the library (the group had donated the books to the library and placed stickers in the front covers) and yet ignored the reference. DUH! Sometimes I am more with it than other times. I will meet with a member on Friday who said they are there to help - although they themselves cannot provide the resources - they are not an agency afterall, but can help us locate resources and make calls, etc. What a relief. The first good news I have heard in awhile. Someone telling me that we will not be cast aside or told to wait.

But as for today - we will see how this IFSP will go. Cross your fingers, say a prayer...

Second opinion , ABA and dogs

Zach was seen by a developmental pediatrician for another evaluation this morning. We did not give him a copy of the first report from Yale so we could get an independent evaluation. He concurred that Zach is ASD. As for a specific diagnosis, the doctor stated that Zach appears autistic but that he is too young for anything much further. We scheduled a follow up for 9 months, at Zach's 3rd birthday.

Once again, this doctor recommended ABA therapy - if we could only get the damn stuff. I am going to try and look into bringing someone into Syracuse and train people on our nickel. Let's see how long that will take. Wish us luck!

Language is down right now, and eye contact is hit or miss. He said "bubble" in his playgroup this morning and "pop", but refused to say "goodbye".

Zach had fun with his cousin's in Rochester yesterday. He was shy for about an hour, but he warmed up to his cousins - particularly his one cousin Morgan, who is 10. She probably has no idea how special that was. He can be such a social little bugger at times. Another cousin had a puppy with them, and by the time we left, I was surprised to hear Zach say "Lou" as if calling to the dog. Where did that come from? Zach loves dogs - maybe one day, we can get another.

We sure do miss Buddy. His ashes came in today. I guess life is simpler without him right now - we don't have to feed him, take him for grooming, wake up early to let him out, worry about how he is with all the therapists in and out of the house. But I don't think that life is easier without him. I crave having him in my lap and petting him constantly.

For those who don't know Buddy, he was our 30 pound black cocker spaniel. We got him when he was a puppy. At some point in his first year of life, he began to have behavioral issues with strangers and children. I remember how I cried when I realized I had (for all intent a purposes) a mean dog. He never once showed aggression to me, and it seemed to be protective. My mother told me the experience was good for me, because one day I would have children who wouldn't do what I wanted them to do, and I would have an idea how that felt. Boy - she probably had no idea how that would manifest itself, huh?

I hired a dog trainer who did behavioral training. Did it get rid of the aggression? No. But it taught me how to cope with it. Buddy learned a few ways to deal with it, too. In the end, he was a terrific dog that readily accepted my husband when we started dating, and my two children when they came along. He was great with them in fact - I can recall Zach sitting on Buddy riding him in the grass in our backyard just last summer.

So now on to getting Zach (and most likely me) a "trainer". It shouldn't have to be this hard. I sometimes feel like we are drowning and being thrown water balloons instead of life savers. My dog was treated better than my kid. How wrong is that?

Losing it

My baby has autism. This is serious. This is as profound as it can be. Why do people treat this like he has a cold?

We have had absolutely no progress since he has entered Early Intervention in July of last year. That is a whole 6 months with no progress, and no one seems to care but Steve and I. No one seems to think this is significant. We spent a whole lot of money to get an independent evaluation by professionals since the professionals we were working with weren't giving us anything. They recommended a therapy type called ABA. NYS Department of Health recommends ABA in Early Intervention EI program for a minimum of 20 hours a week.

We made the request for ABA at the beginning of December. We were just told today that Onondaga County does not have these services for children Zach's age. So I have read umpteen books about getting into EI and that early treatment may be his only hope. I have read that ABA is the only scientifically proven therapy that works for ASD. I was instructed by the folks at Yale that for ahcild with Zach's profile of ASD that ABA would be the best treatment. And the people who are supposed to be helping us with our child say that it is not available until he is 3. Why doesn't anyone want to help my baby?

They offered us Floortime therapy in its place. The Floortime therapy model is based on the child leading the therapy, where the therapist pursues the childs interests. The problem is that we want Zach to imitate others, and to follow directions - Floortime is not the right therapy for this. Our service coordinator seemed to agree. So what the heck are we to do?

Our health insurance won't cover the therapy. If we lived in Minnesota, Blue Cross Blue Shield would cover it there. We just happen to live in the wrong state. Our insurance is through our company, and is supposefly self-insured. Shouldn't they be able to approve what they want?

This is what is going on if no one can seem to follow my ramblings, an anaolgy:
Scene 1
Month 3 of trying to figure out what is going on.
Mom: My son has cancer.
Service Manager: Oh yes, he likely does. But we can't get him diangosed for another 6 months.
Mom: I will drive out of state to get him diagnosed then and pay with whatever money I have out of his college savings.
Service Manager: Well just make sure I get a copy of the report. And then we can provide him with what he needs.
Scene 2
Month 5 of trying to figure out what is going on. Trip to extreme Ivy League medical school to get official diagnosis by the doctor who is currently writing the medical encyclopedia on cancer.
Dr at extreme Ive League school after tests are run: Yup, he's got cancer. Good luck.
Scene 3
Back home to Nowheresville where no one cares. Month 6 of trying to figure out what to do.
Mom: We got his official diagnosis. They say he needs chemo.
Service Manager: Oh, sorry. We only can offer you penicillin.
Mom: But he needs chemo!
Service Manager: If you wait another 6 months, you may be able to get into a place that can get you chemo. The only thing is they have a 200 person waiting list and you can't get on the list until he is a little older.
Mom: They say he needs help NOW! We have been trying to get help for 6 months. Time is of the essence the doctors told us. Can you do anything to get us on this list?
Service Manager: No. But good luck.

OK - so it's not cancer - but it is that serious. Can Zach die from autism? Jett Travolta reportedly died of a co-morbid condition commonly found with kids on the spectrum - seizure activity. Does Zach have seizures? We are scheduled with a neurologist to begin this inquiry. He has a sort stim, where he holds out his arm and tenses them while he spreads his fingers. Is this a seizure? Possibly. This is serious stuff folks. He needs help now, and all we keep on getting is the run around. I am really beginning to lose faith in people.

Zach will be going to the developmental pediatrician Monday, most likely so that we can be told by someone that he has autism. What a revelation that will be. (sarcasm should be noted) We cancelled his hearing test called an auditory brain response (ABR) because I didn't feel comfortable having my son at age 2 who may have a neurological disorder go under anesthesia. Lots of risk with no obvious reward. His hearing can be tested later.

Steve put a call in to a professor at SU today. She has been somewhat helpful and indicated that the information that was given to us by the county regarding ABA therapy not being available was not true. So now we are being lied to by the people who are the experts and are supposed to be helping us. How much more of this crap can we take? When is it time to call a lawyer?

My son's life is being treated like an inconvenience because some government employee took time off to be with her lovely family instead of doing her job adequately. Are these people overworked? You bet. But here is a chance to help someone - do something real. I will follow through with this kid. This will make a difference. But 6 months has gone by, my insurance has been tapped by people providing services, and there has been no improvement. Is this acceptable to people? Don't charge my insurance company and give me services that do no good if I am just added to the pile of unwanted paperwork on your desk. Set us free to figure things out on our own, rather than be part of this masquerade of help you supposedly are giving.

GFCF diet part deux

So - concerns on the diet are that Zach is receiving enough calcium and since he is picky about meat, enough protein. A consult with the doctor and the dietitian revealed that Zach requires 16 grams of protein a day. His milk substitutes alone likely cover this - and yes, several of them are complete proteins (soy and hemp milk particularly) As for calcium, his milk alternatives are almost all calcium fortified. Plus he eats broccoli (a terrific source of calcium that is one of the most absorbed forms) and we give him a calcium supplement for good measure. We also provide Zach with a multivitamin (that is GFCF and dye free) and fish oil (Omega 3) supplement, although in all likelihood, because he eats well in the veggie and fruit department, he doesn't require. We also eat some cereals - (YEAH for Chex Rice Cereal for taking the malt out!!) that are fortified too.

What is the issue with gluten and casein? From what I have read, the theory is that some individuals are incapable of completely metabolizing gluten and casein. These proteins end up permeating the intestine wall (a condition referred to as leaky gut) and entering the body after reformatting into peptides which have opiate-like effects. Opiates basically jack an individual up as if drugged. There is no conclusive research at this time as to the efficacy of the diet, however, a lot of parents ancedotally report its benefits ranging from reduction of autistic symptoms to near recovery.

What has it done for Zach? I will not make any judgements yet about this diet, but this is what we have noticed:
1) He quit puking the week we put him on the diet.
2) He began saying a few single words and phrases after nearly 8 weeks of nearly nothing.
3) His eye contact went from almost none, to much better.
4) He began some pointing again.
5) He began interacting with family members he knew again on a regular basis (no more retreating to a corner)
6) He began interacting with family members he didn't know as well and laughing, making some eye contact, and allowing them to touch and hold him.
7) He began interacting with his SLP for the first time ever.
8) He began letting others engage him in play, and played with toys more like intended and less lining them up.

These observations are ones that I made, Steve made, my card-carrying-Republican mother made, my brother made, my neice, who babysat for us and is Special Ed certified, made, and our SLP made. I only wish during all the nuttiness of this summer that I had videotaped Zach more. I am going to make a concerted effort to document him more on tape from now on. I advise anyone out there who suspects there children to have an ASD to do the same.

We are going to attempt to add some things back in to Zach's diet to see if they make a difference at some point. However, if we see no change, I still will not be convinced that the diet did not help. Why? Because perhaps getting him off the stuff for a bit gave him the alloted time to heal and now he can process gluten and casein. Just a guess. So in other words, we may never know for sure if this helped Zach. But it hasn't hurt him, and most likely has offered him a healthier diet - certainly better than the average American diet.

Barfing twice a week is just not right, nor are bright red ears.

Beware: this may gross you out a bit.

Zach has had GI issues since he was 10 months old. Basically, his GI issues consisted of totally out of the blue, without warning, full barfing of all that was eaten within the last 12 hours. These puking incidents averaged twice a week for well over a year. I wrote down the food he was eating to see if there was a correlation between what he ate an his barfing. There was no obvious correlation - he drank milk, ate cheese and yogurt every day - but he only barfed on average, twice a week. Didn't have an obivious milk correlation. The pediatrician told me that some kids were just barfers. Anyone who witnessed one of Zach's barfing episodes knew these were pretty tremendous. He literally erupted. I never accepted the fact that some kids just barfed and had begun researching getting him in to a pediatric GI.

My mother-in-law pointed out that Zach's ears were very red sometimes. Sometimes it was just one ear - on the outside and not on the inside. It didn't seem to bother him. I brought him in to the pediatrician and there was no ear infection. Of course, the ears would never stay red for very long. Hmm.

So a Google search produced a vast array of information about red ears. We read that children with red ears commonly have food sensitivities. We also read that there were instances of parents with kids on the spectrum reported having red ears. We also read that those with celiac's may have the same symptom.

Puking, red ears, autistic symptoms, we're going to try the GFCF diet we decided.

With a little help from Linda, a registered dietitian, a bunch of books and websites, and good ol' Wegman's and NaturTyme - we were off. GFCF stands for gluten free and casein free. Gluten is a protein commonly found in grains such as wheat, barley, rye, and kamut. Say goodbye to most cereals, breads, pastas, crackers, chips. Casein is a dairy protein; there goes milk, cheese, yogurt, and ice cream. So what can you eat? Meat, fruit, vegetables. So - corn and rice are OK, chicken is OK, but not breaded with wheat flour, french fries OK, eggs are OK, and all the unprocessed fruits and veggies he likes.

Almost all procesed foods have some sort of gluten and casein in them. Aside from the obvious, ingredients like malt, modified food starch, and whey must also be avoided. Go read some labels and tell me how many times you find these - they are everywhere! We have to be careful with hotdogs and cold cuts - but have found brands that are safe - Hormel Natural meats are for the most part safe - I always still label check though. Applegate Farms are our source for hot dogs - and they have chicken, turkey, and beef ones so we are fairly lucky since Zach is so picky about eating meat, sometimes this is his only meat source.

So what are the replacements for milk? soy milk, rice milk, hemp milk, almond milk, hazelnut milk, coconut milk. Many of them are pretty good - but it took us a bit to find brands we thought tasted good. (I think 8th Continent soy milk tastes like playdoh for sure.) Wheat flour alternatives include potato flour, rice flour, almond flour cornmeal, buckwheat, quinoa flour, tapioca flour.

The diet may sound restrictive - but think of this - Zach can still eat a filet mignon, with baked potato, side salad and have a chocolate lava cake. He can also have chicken nuggets, french fries, and apple crisp for dessert. Or turkey, mashed potatoes, green beans, and pumpkin pie. How about fried pork hops with onions, a side of rice and squash, with peanut butter chocolate chip cookies for dessert. These are all viable options for him that we have prepared without gluten and casein. Just none of it is purchased - we must make it ourselves for the most part. It's not fast and it is not convenient. But most things in life that are worth it aren't.

Cookies & Outliers

Progress with Zach has been slow with one exception: he can say cookie darn well. Yup. Where there is a will there is a way. We need to start ABA therapy on this kid! I really feel that I cannot push him to do it on my own - I need help. His current services are not producing the results that I know (and the folks at Yale confirmed) he is capable of. This is nothing short of a sin that he has not started these services yet and that I have to jump through my bum to get things rolling.

I was reading this morning about various biochem treatments for autism. Biochem = mostly medications but some supplements too. It finally struck me. Many of the books I have been reading have made a lot of sense to me as an engineer, stating not to waste time with holistic or alternative therapies that are not scientifically proven. They may not hurt your child, but they will waste your time, and time is of the essence. This made total sense to me at the time, but I felt some caution, that these were people who thought too much along the same lines as me, and that perhaps, there were other logical views I should consider.

Caveat to the following: I am no doctor of medicine by any means! I don't even play one on TV. There are various diseases and disorders that are catchalls for groupings of symptoms more than a specific type of causation. Leukemia and epilepsy come to mind. Autism is also like this. The thing about autism, is that it seems that unlike some of these other afflictions, it manifests itself uniquely to every individual, thus, I like to call it the snowflake disease since no two persons with an ASD seem to be alike. Indeed, I have read cases that even identical twins who both have ASD may have different symptoms.

So, knowing a little about the scientific process, how does one go about doing a study whether it be a single or double blind study, if the subjects can vary so much, more so than just about any other disorder/disease out there? You need a group to test on that are alike - and autism just doesn't have a lot of groupings that seem to work this way. This is the reason that autism took so long to be defined in the first place. In fact, did many of you know that the medical community readily accepted that autism was caused by "refrigerator mothers" who unwittingly showed a lack of love to their child? This was widely accepted well into the 1970's until it was disputed by a Dr. Rimland. However, the damage had been done, parents were blamed for their children's condition, and many people still argued for this insane theory well after the fact.

My point is, with such a complex set of symptoms that manifest themselves in so many ways, how does one go about studying what is effective to all children of autism? How do you control this study when it requires statistically identical groups? Early Intervention has noted that an individualized plan is required for each child because they are so unique and have different needs. Indeed, the medical community is going to need to recognize the same. Some things may work for some and not for others. Thus a lot of anecdotal evidence vs. the sound scientific reasoning are pitted against one another.

We just don't have the studies and the statistics for all these treatments, that does not mean they are not affective. It just means the science/research/medical communities need to get off their duffs and start doing what it takes. There is too much anecdotal information for these things to be ignored. Someone has to devise a way of studying these things that will give the appropriate level of proof needed to say if and when these treatments are affective. Autism affects 1 in 150 children, and 1 in 94 boys. Where is the funding for this research when it affects so many?? (I'll give you a guess - how about AIDS, substance abuse, tobacco - all things that there are known preventatives for. Don't believe me - check out the National Instute of Health's website about where your tax dollars are going http://www.nih.gov/news/fundingresearchareas.htm)

Parents do need to try things on their children, and tell the doctors that their academic background, credentials, and experience are too limited to effectively deal with this disorder.

I have always been a misfit - I was tall, blond, geeky, an engineer. I am used to being the one who doesn't fit the average case. Just try and go shopping for pants with me! I was told not to pursue electrical engineering due to my sex. Steve has his master's degree at the age of 21 and like me is a geeky engineer. Just because something is an outlier statistically, doesn't mean it doesn't have relevance. In fact, sometimes is shows that there is an error in the theory.

Zach will not be on the average curve - but neither were Steve and I. Who wants to be average anyway?

What's next? Surprises.

So here we are in 2009. No real resolutions being made - just trying to figure out this new world we are living in.

Trying to stay normal is the hardest part for me. This is so intense at times, I feel like there is so much for us to learn; I am constantly reading books, talking to professionals, talking to other parents with kids on the spectrum, documenting what is going on, case managing Zach, researching on the Internet. I have a hard time having a normal conversation with anyone. My thoughts almost always lead me to something to do with ASD. I am sure people get annoyed with me this way. Why can't I just talk about the latest restaurant, band, political event, whatever like everyone else? Because if I look up I might miss something crucial.

But there have been some surprises with people wanting to reach out to our family. A few friends have contacted me, sometimes just to talk about life like we used to pre-diagnosis, some to get updated on what is going on. A cousin of Steve's has provided references to people who know a lot about ABA therapy. An aunt called to check in with Steve at Thanksgiving time. I know he appreciated that. Christmas cards were terrific with people writing to wish us a great holiday and sending notes all giving us some hope and support. An Aunt of mine told me that she read this very blog. I was so touched, and she probably never realized how much. I know she is going through some pretty serious health issues of her own, and like my mother, is limited in what pain medications she can take and what can be done to help her. This really blew me away. So many people care. We are so lucky.

Today Sophie will be going with her cousin to have some special time. She may even go to her first movie in a movie theater. I can remember very clearly taking this same niece to some of her first movies. I loved loved loved spending time with my nieces and nephews. Still do. They are all pretty much adults and living their own lives, and are frequently too busy to spend time with their old cranky aunt with the crazy family, as is the natural progression of life. I will always cherish those trips to the zoo or the science museum or the park, but mostly the sleepovers where we would dance around in our PJs and watch movies and eat junk food. I will always view each of them through those memories. I was so lucky their parents shared them with me!

My friends are terrific too. My friend called and is going to take Sophie for a bit tomorrow and then have us over for lunch. She has three kids 4 and under and she is going to tack on one more. She is probably one of the best mothers I have ever met. (I am frequently jealous of her ability to keep schedule with her kids and seem so calm and have an active social life.)

So if anyone has been wondering what they can do and they don't want to buy a book as mentioned in another post - look at what some of these others have done. An occasional phone call, email, or card to let us know you are thinking of us is always appreciated. Bake us some cookies, make us dinner, tell us whats going on in your life, stop by and visit us, invite us over to your house, or just read this blog. Those are all great ways to support us and we appreciate it all.

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Zach told Sophie he loved her after she told him a few days ago. I was there to witness it this time. I am ecstatic over this. I don't care that he couldn't say it to me or his Dad. His sister has really been itching to have him talk, and wondering if he loves her like she does him. This was a terrific present and more important for me to hear him say it to her than to me. Sophie is going to be a rock in Zach's life- I just know it. She really likes him and loves him. and I know she will stand up for him whenever she can, most likely with that bully kid at school that will call Zach a retard or something equally cruel. Oh... how I don't look forward to those events.

Maybe not. Maybe by the time Zach is in school, more kids will understand and be compassionate. Maybe no one will ever notice that he is a little different. What surprises lie in store for us - the next year will likely give us a pretty good glimpse of what is in store for our future. Surprises.