It's happening ... again

So hard to write. Don't want to reveal to anyone what I know is going on. Why? First off, because I haven't been collecting the evidence to "prove" it. (I should be collecting all this daily data on what he eats, how he sleeps, observed ticks, voiding, behaviors, word usage, skill usage but who the hell has the time when you are running around after a 5 year old and a two year old trying to keep some semblance of sanity in the house?Did I happen to mention the 3 sets of meals I have to cook every lunch/dinner/breakfast?) But mostly I haven't been writing because it feels too awful and I feel so helpless to ever get out in words that truly epxress how we feel.

Zach is regressing. Again. WTF. The experts say it happens once, once they tell you. We have had two major regressions already. This could be a third. This might not appear as obvious as the others to most because he is still saying some words, but to Steve and I, it is so friggin obvious that we want to scream.

He is saying less words. The words he is saying are only after we force him, and for things he wants. No pointing to things that interest him. He appears unable to learn anything new. He has lost some skills such as using a fork and riding his bike (even though he was doing so minimally.) Game playing and cognitive skills such as identifying puzzle pieces seems to have evaporated.

And let's not forget the weird ticks/stims he is having. He is jumping around a lot. He is not sleeping well. The other night, he lay there tossing and turning. Whatever that was plaguing him, he couldn't tell us of course, was keeping him from sleep. He wanted to sleep - he wasn't trying to stay up and play, he threw his blanket over his head as if bright lights were the problem. He was in the dark, figuratively and literally.

This warrants a trip to the doctor - but which one? Neurologist who said that he is just normal? Pediatrician who accepts the view that this is the way it is? Asthma doctor?

In my heart, I know right now that whatever caused Zach's autism in the first place, beyond the genetic predisposition, but the stuff that is working on his nervous system, is doing it's thing as I write this. It has taken him away again. Not like the undercurrent that totally pulled him under the first go around, but a series of eddies that are still working to draw him away from us.

I hate this. I hate this. I hate this.

Full disclosure

I didn't want to post for awhile - and I am beginning to realize it was more about my emotional state than it is Zach. I have taken an excerpt of mine from an email I sent a good friend who also has a son (age freshly 7) on the spectrum and has lots of experience with the roller coaster.

I guess I am still pretty down - likely because Zach really hasn't come that far. It's like he has been in the same place for 16 months. Actually, he is further behind where he was 16 months ago. :( The vocabulary is no where near as functional, and is limited and has to be prompted. He no longer recognizes letters, even when I prompt him to identify. He cries when ANY demands are placed upon him.

He hates therapy - regardless of methodology, and even therapist personalities. He has begun new stims - that sort of look more seizure like than before.

They eye contact and interest in others ebbs and weaves. The pointing seems random, and without function. Although he seems to enjoy bike rides, he will not peddle regardless of how many times we show him and encourage him. He no longer plays with balls. He no longer sings. He doesn't dance - only bobs his head here and there.

I am losing most of my steam here. I wish he almost had more of the symptoms of autism - lining things up, screaming, head banging - just because it seems like those kids are frustrated without the lack of communication. Zach seams perfectly content to be in his own world, and doesn't want it to be interrupted, less it be for food and the occasional diaper change.

I want to believe this is being 2 - but he is almost 3 now. Tired. Disappointed. Down. I wish I had some way of lifting my spirits up. Driving past this major developmental institution in Saranac Lake this past weekend didn't help. I just want to know if that is where we are heading?

I really hope this is my perception problem - but I am looking at the facts and it is hard to argue with where he was and where he is. I appreciate you trying to keep my hope alive - but the following article keeps on lingering in my mind. http://www.time.com/time/magazine/article/0,9171,1898322,00.html

I hope I am not bumming you out - I don't think I want to put this in my blog - but I feel like I need to let SOMEONE know what is up with me.

Pity Party

If the previous post seemed scattered, it's because the author's brain is totally scattered. There are likely items that I didn't even mention in The Decision post that were important and considered. Is there any way I can improve and help him? I am trying not to feel sorry for myself - but that feeling still pushes through every now and again- will it ever leave? Shouldn't I be grateful for all we have? What's that line I always used to hear "at least I have my health." Well, for Zach, we don't have his health. He has a disease.

Living day to day, a necessity, sometimes gives you little to look forward to when you have a child with an unexplained disease and no predictable future. When there are good days, you feel like you climbed Mt. Everest and when they are not so good, things feel as bleak as if you are on the Titanic.

The fact that that this is a neurological disease - something currently acting on my child is probably the hardest part to deal with. I keep on thinking, and hoping, that in 20 years, they will have this all figured out, causation, remedies, the whole business. But it has taken 35 years for them to just get over that this is actually a real disease, and not the lack of love and attention of mother's for a child. How absurd is that?

Maybe that's what I need to emphasize - autism is a disease. Yes it is called a disability, a disorder, and no it is not some contagious, communicable thing, but it is an abnormal condition that impairs bodily functions, and has specific symptoms, thus a disease. The bodily organs and systems affected? The brain mostly - I don't think many people would argue that this is a neurological disease. However, others might chime in with digestive organs the "gut", some would say that it is in the muscles citing weak muscle tone and motor planning issues.

OK - the prognosis - this disease called autism will not likely result in Zach having a shortened lifespan.

Prognosis for Autism: People with autism have normal life expectancies. Symptoms in many children improve with intervention or as the children age. Some people with autism eventually lead normal or near-normal lives. ... Although there is no cure, appropriate early educational intervention may improve social development and reduce undesirable behaviors. People with autism have a normal life expectancy. ... Autism varies a great deal in severity. The most severe cases are marked by extremely repetitive, unusual, self-injurious, and aggressive behavior. This behavior may persist over time and prove very difficult to change, posing a tremendous challenge to those who must live with, treat, and teach these individuals. The mildest forms of autism resemble a personality disorder associated with a perceived learning disability. ... Symptoms in many children with autism improve with intervention or as the children mature. Some people with autism eventually lead normal or near-normal lives. About a third of children with autistic spectrum disorders eventually develop epilepsy. The risk is highest in children with severe cognitive impairment and motor deficits. Adolescence may worsen behavior problems in some children with autism, who may become depressed or increasingly unmanageable. Parents should be ready to adjust treatment for their child's changing needs.

(Source: excerpts from National Institute for Health, National Institute of Neurological Disorders and Stroke (NINDS) Autism Information Page)

My favorite line from the above excerpt? " a perceived learning disability" I never would have known what that meant until I met Zach. One of our greatest concerns was with retardation. To this date, all cognitive testing done on Zach shows him to likely be in the retarded category. But to meet him, spend time with him, hear him once in awhile count to 20, match colors, play a computer game - you just feel that there might be something up with the test and indeed there is. They anticipate that a child can communicate and imitate - Zach cannot do either particularly well. But does this make him retarded? I think it just makes him a pain in the ass, but possibly a smart one at that.

Medically accepted comorbidity complications: Epilepsy. Personality disorder. Depression. Psychosis. Neurosis. Not to mention learning disability and behavioral problems.

Does everyone feel self pity like this? I don't remember the "woe is me" feeling being so frequent as it is now. I pray that I can get over these feelings more quickly so that I can act the way that will be most beneficial to all involved.

The Decision

I have read a few books where mother's discuss their traversal through the young years of dealing with their child's autism. Many of the books describe home based programs where the child was sent to a typical preschool with a privately hired one-on-one aid. This is what I wanted in my ideal (ideal within the confines of autism that is) world. I wanted a team of people to work with Zach at home, I wanted to sign him up for preschool and send him with one of the team. He would get some socialization, we could get a lot of one-on-one time where he could build up skills, his exposure to human petri dishes would be limited (that would be other children who would get him sick since he gets sick at the drop of a hat), I could see everything and learn, the diet would be adhered to and there would be no ostracizing based on different foods. It would be optimal, right?

Now the reality; people have lives outside of Zach and there are always these obstacles.

Issue number 1: therapists take days off. Zach has missed over 50 sessions since March because therapists took days off for various reasons. Are there people out there who don't take days off? I have yet to meet them. Consistency is a HUGE problem, day to day expectations are changed, Zach does not understand what is expected of him, there is diminished progress. All the schedule boards in the world don't seem to alleviate this.

Consistency also comes in the form of the therapists all being on the same page. And this brings up issue # 2. This is a difficult one too. We held weekly team meetings to go over questions/concerns and review progress and the upcoming week expectations. We had a log book that described, in brief, each individual session. We had program plans, we had a website. I attempted to videotape sessions - but not all the therapists were thrilled about this. Therapists started to come to me individually to discuss their concerns rather than voice them in the team meetings. I think that might have been the beginning of the end. I could no longer manage the group. They were not clicking organically and all the management efforts were not helping.

Issue #3 There was the issue of preschool - we tried (and miserably failed) potty training. Most preschools have a potty trained requirement for entry. Uugghh. This too, had given me me a lack of confidence in our efforts. If he just didn't get potty trained, that would have been one thing, but the resultant behavior of not eating or drinking for 3 days, not pooping for 3 days, and refusing sippy cups entirely really left a mark on me.

Issue #4 Then there was how to get him out of the house since we believe he was getting bored at being home and causing compliance issues. I started making phone calls and visits to find a room where our team could work with him. Library, church, where else? I am just not that resourceful and nothing I pursued was panning out. In fact, it seemed I was given a hard time everywhere I asked.

Issue # 5 - I am exhausted and functioning minimally. It is so hard to have so many people in and out of the house, to be attending to two young children, pay attention and record all that is going on, and then once the team leaves supposed to clean house, cook, do laundry, manage finances and house duties, and continue the tactics the therapist recommended throughout the rest of the day. I couldn't keep up. Ask my friends who likely feel abandoned by me. (Sorry...) I realized that I was spending 30 hours a week in therapy with Zach - unable to run errands, clean the house, make dinner, attend to Sophia, be normal in any way. I was exhausted and feeling terrible that I wasn't doing more, and more importantly, that Zach wasn't progressing more. One of the therapists remarked that the house was cleaner before I left my job. Ouch. Let that pass. Focus on what really matters: Why wasn't Zach progressing more?I have no life, and cannot handle the amount of work thrust at me. There are likely women out there who can - but just like I had to admit at age 16 that I wasn't supermodel material, I have to admit now that I am not uber-mom. I am barely even OK-mom.

Being that my background is extremely limited in the field of child development, I was having a hell of a time leading which is what I really needed to do. I just didn't have the confidence to make certain calls. I needed to motivate the team to feel compelled to make things work, put in the extra effort. But alas, I failed as a leader, and failed miserably. My depression had gotten to an all time low, just when people, the team that is, but mostly Zachary, needed me most. I could not compel people do do any of the things to make the team work. I tried, but it was over. I couldn't wallow in self pity for too long though, even though I feel like the worst mother ever because of this. I want to be a better mother so I still have to try.

I voiced my feelings to Steve who seemed surprised at all that I told him. He, too, wanted a home program for Zach. I realized he did not see the day-to-day of things and that the weekly meetings he did attend masked what was truly going on. Sure we talked about issues, even the ones mentioned behind closed doors, but did we really honestly address the issues? I have to laugh, because this felt so much like where I used to work and a Dilbert cartoon at that.

I am not blaming anyone else for this - it was my own doing. I didn't want to hurt people's feelings. I felt that if I mentioned some of these issues at the team meetings, those people who were responsible for some of the issues would take note and address it. What I didn't realize is that people are likely not aware that they are impacting (or not impacting for that matter) his progress the way they are. I needed to address it with the individuals.

I wasn't comfortable confronting team members individually - I didn't want to hurt feelings, afterall I was so grateful to have them with us in any capacity. I know that each of the women who are currently working with Zach are good people with terrific skills, and felt I lacked the expertise to tell them what they were doing was wrong or ineffective. I feel like I have a difficult time confronting without being abrasive. I didn't know how to address my concerns with the team as a whole, my feelings felt too raw. So I addressed them with the team members individually. I tried to see what they could offer me in terms of support - I was so desperate to get the home program working. They tried, but they could not make up for my inadequacies. It was one of the lowest points since Zach's ABA treatment began. I have yet to get out of the depression I feel at seeing how I could not make it work. I am just too tired, I feel so overwhelmed, and with limited resources.

Besides individual therapist issues, there were programmatic and strategic issues too like how to handle schedule lapses and Steve and my follow through of what therapists were teaching Zach. I think it would have been best if I could have gotten all the kinks worked out of our existing program - but it seemed like it was going to be such a huge effort with no guarantees. I had started looking around for new therapists - to replace Ali who would be leaving for school, and to sub in for the other therapists as needed - perhaps even replace one of the therapists and rid the team of the dissension. The county would have to get the therapist into contract.

Up until last week, I almost felt that Zach was given the worst mother ever. Then I ran into a cousin's wife who read a book my Mom passed on to her about a woman's struggle with getting her children with autism the appropriate treatment they needed, Let Me Hear Your Voice. We briefly discussed the book, and she made the comment that I needed to hear: "works great, if you have a lot of money."

When I looked back at all those women who wrote books on their home based programs I saw the gifts they were given that we were not. While I was working, money was not a huge concern. Now it is. Catherine Maurice, money was not mentioned as a concern at all. Therapists prices range from $20 to $95 an hour. And you are supposed to be getting 40 hours a week of this stuff. And this doesn't cover supplements, non-covered doctor's bills, special diet, resources, therapy toys, and various other incidentals. We have a limited income now that I am out of work, how do I determine what we spend our money on?

In other books, families were given money, had the help of family (grandmother's even learning to do therapy!) and one book, they actually went from a hefty six-figure income to bankruptcy. However, these books also had kids who lost their diagnosis. What would you do?

Spending all you have on this stuff seems to be the response I initially had that feeling, but then I looked at those baby blues of Sophia and realized that although Steve and I could manage OK with just the basic necessities, she would take the hit most of all. Is that right?


In the end, the decision was made to send Zach to school. We were pressed into a decision that seemed impossible to make. We consulted Yale, another mother whose son is slightly older, and our own therapists on the pros and cons of our options.

Zach wasn't progressing as I know he could, and this could be the change he needs. There will be consistency and oversight of the program. I can interject myself. I will be given some free time to, say, clean a toilet or two (yipee) . We will likely hire a private therapist to supplement and oversee what is happening.

I cannot believe I am sending my 2 year old to school. He will actually be in school longer than his 5 year old sister at kindergarten. I refused the bus, just couldn't do it. Sophia may be looking forward to it, but Zach would have no clue why I was plopping him on this vehicle without me. It hurts to think what he is going to feel (abandoned) when I drop him off for the first time.

God, I love him. I love both my kids so much. It shouldn't have to be this hard. I am so excited for Sophia - looking forward to something I know she is excited about. With Zach, I am terrified. What if this is another bad decision? What then?

And I will miss him. I never sent Sophia to school until she was 4. I love spending time with my kids - just hanging out at the house, the occasional playdate, going to the park, reading books. Why can't I have that? I am not working, so I will take advantage of the "free" time to get things going at the house, and maybe work on my skill set too. How could I have been a more effective with the team? Can I learn to run sessions with Zach? Trying to kick start the workshop for training pediatrician's about early diagnosis management. My goal is to get enough done while the kids are gone so that I can be more attentive to when they are here.

Seems like a plan - makes sense right? But my heart still aches at the thought of my baby boy going off to someone else's care. He's mine, why can't I handle this? Why does there have to be so much hurt? Why can't decisions be more obvious? Why does he have to have autism? Why can't it be someone else?

Answers: Life isn't fair and life aint easy. Off to a good cry.

3 AM Chatties

I was complaining of not feeling well, but no one seemed to listen. I was hot all over, and then I looked down to see blisters all over my body. My mother and my husband told me I would be fine. Then I started to heave, and then convulse, when it happened: I heard various sounds coming from the other room and woke up.

I tried to go back to sleep after the weird dream. But those sounds made their appearance again. And then Sophia walked in my bedroom and I asked her if Zachy was up, to which she acknowledged he was and was keeping her up.

So here I am at 3:09 am trying to figure out what all these things he is saying means. He is babbling like crazy. He is happy, but doesn't look like he is going to sleep anytime soon. He keeps saying something that sounds like "gagomamma" over and over and over again. I asked him if he was hungry, or thirsty - no response. I have been asking him over and over if he is OK - no response just once did he give me a brief OK and off to babbling some more he goes "mamamama". A little eye contact, and I got him to touch his nose when I asked. Then he's been covering his ears.

A half hour of this so far with no end in sight.

I'll use the time to look up sunburn treatments since my back still feels on fire after our beach trip. Should I take him to WalMart to fetch some aloe? Why bother - there is no one else up to help put it on.

Then I remembered a remark in a book so I look it up. "...maniacal laughing and nighttime laughing have always been connected with a yeast problem, especially after eating sweet foods such as bananas or sugar..." I read this and think back to the two bananas he has eaten today. Could that be what this is? His stool analysis did not show any yeast problems, but I was just commenting to Steve how I was concerned if the result was accurate. Am I reading too much into this or have I been ignoring a problem for too long? This is the first night in a very long time that this has happened - and some kids just get up in the night every once in a while.

I will look into another test, not worry about this too much more, and look up more sunburn cures on the Internet.

I wish he could tell me what is going on. I can't leave this alone. And then I find the article that scares me- it's about the test they ran on Zach called a CDSA - Comprehensive Digestive Stool Analysis.

Although the CDSA does test for yeast and hence is often used if a Candida overgrowth is a suspected problem, many top functional medicine doctors agree that this particular test is not particularly reliable for this purpose as yeast can be found in the stool of perfectly healthy people and it will often give false negative results, i.e. indicate that no yeast were detected when in fact the patient DOES have a significant intestinal overgrowth. One reason for this is because overgrowth of yeast is predominantly a problem in the small intestine and since the stool is formed in the colon, the yeast do not get caught up in it, and hence show up on examination.

From http://www.ei-resource.org/laboratory-tests/

Then there was a post to a discussion board:

According to our DAN doctor, the CDSA test gives a lot of false negatives. Yeast tends to form in clumps, and if you don't get that clump in the sample, you won't get a positive culture. If you get a culture, the good news is they test to see what is most effective on your yeast.

Phyl's son and mine both showed negative, yet they were both positive on the Great Plains OAT urine test. I would believe a negative on that test more.

My son and I both had low probiotics on the CDSA test, which does hint at a potential yeast issue. I think the Great Plains test is 'only' $128. They can also test for peptides for gluten and casein in the same urine sample.

I highly recommend the Great Plains test. They will also tell you about Glutathione levels-

Then there was the article on TACA - Talk About Curing Autism.

What does yeast overgrowth look like?

Yeast overgrowth shows itself in two forms – behavior and physical.

I notice the following descriptions that apply:

Behavioral signs

Sleep disturbances

High-pitched squealing

Inappropriate laughing

Physical Signs

red ring around the anus

Oh lord. Here we go. Off to order the test to check the lads urine. My sunburn will just have to wait.

Beach Day Drug?

I am sunburned - Sophie is a little pink on the neck and cheeks, and Zach is clear. I feel so guilty that Sophia got nailed. I sprayed her down on 3 occasions, and even had her wearing a long sleeve rash guard, applying sunblock to the back of her ears and part line in hair, but alas I missed a few important areas. The beach was a blast. All of Zach's therapists showed up and we took along Babcia Morphet for an extra set of (very much needed) hands.

We met another family out who also has a 5 year old daughter and 2 year old son on the spectrum. In fact, our little beach picnic was their idea and a good one at that.

Zach wanted very little to do with the playground where N. (Zach's counterpart from the other family) was all about the playground. That was OK. He has established himself as a fish instead.

Liz took Zach to the edge of the lake and had to contain him from running in since the lake didn't open for swimming until 11 and we were there at 10am. Once swimming commenced, Zach could care less if I was around. He loved going in with Ali and Liz - I could see the big grin from 100 feet away. As the day progressed, and Liz left, Cocoa the speech therapist arrived. We pulled him begrudgingly from the lake, and got him to eat a little and play with Cocoa for about 15 minutes. But that was it, he wanted back in that water.

And back in the water we went. He was roaring (literally) with excitement. He was beyond happy, he was downright euphoric. I can tell you that I have never seen him so happy and for so long in his entire life.

If I had to wager a guess, I would put my money on him getting a lot of sensory input from the pressure and subtle movements of the water. He went in up to his chin and loved it. At one point, standing on his tippy toes to keep his head above water (and within a foot of Mom's reach), Zach tipped over and under he went. Frantically, I reached for him and popped him above the water. I was scared. He was spitting and sputtering, his eyes blinking and dripping with lake water, and I asked him if he was OK. Nothing. I asked him again. "I OK" he finally replied.

Thinking he would be a little freaked, I picked him up and started for more shallow water. To my surprise, he wiggled out of my arms and back in he went. Next thing you know,(there he goes!) under the water he went only to pop up a moment later with a big smile on his face. He shrieked with delight. He repeated this heart stopping (for Mom) feat several times in a row. Ali's parents who were on the beach watching the event, and likely not understanding the magnitude of his enjoyment of the water for me, said later that all they could see was a little green baseball cap floating in the water, popping up again and again.

Meanwhile, Sophia having a friend, who happened to be a girl, to play with who was on her energy level made her a very happy camper. She was in and out of the water with A. They found others to play with, a little too rough at times, to which Babcia intervened. She ate heartily at lunchtime and back she went to swim and make sand ponds.

Joy, happiness. I feel like this is so simple a pleasure for others, likely taken for granted. There were no tantrums - no, not even when we left; they had their fill. We attended a graduation party in Rochester, NY that same evening. I was giddy the whole one-in-a-half hours down the thruway. Steve likely had no understanding why. I don't even think I realized how happy I was until I realized I had been so happy for, well, hours, and that just hasn't happened in a very long, long time. Seeing my children happy, doing things that are good for them, typical, with others, no stares, no tantrums, just happiness for 5 hours.

A dream came true for me yesterday; I was able to witness pleasure in my children, unabated, innocent, unfettered happiness with no thoughts of what they can't do, what they might do, of disability. It was as if I finally found that happy pill. My heart filled with hopes and expectations that linger around, but all too often, seem like forbidden fruit. Don't take a bite, remember you will never have this. But we did!

Joy, happiness, even for just one whole day. Amen.

Did you think you lost us?

There is no excuse - probably needed to blog more than I did. Was too afraid that it would be too raw and would likely annoy/upset some of our readers, or cause problems of some sort or another. Also - I think I didn't want to think about what was happening. I was procrastinating processing what was happening. It was too much for me to handle.

We had to make some difficult decisions. We made the decision of Zach's program at the very last minute - as forced on us.

I will write a little bit about this experience in the upcoming blog. I think I have come to peace with the decisions we made. There was no obvious decision, just a choice made after some analysis or another.

But for today - we are off to the beach with the kids. It is Ali's last day (our privately hire therapist who is off to grad school at Columbia in New York).