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.