Eating bonbons

When most people ask me about my career situation, I tell them that I work part time. Many a time, I receive the "oh, how nice" - like I am some spoiled little housewife who sits around all day watching the soaps and eating bonbons. I am not even sure what a bonbon is, so I had to Google it. They look really good don't they?

Most of these people don't have children, so I remember what I thought I would be doing when I stayed home with Sophie for the first time - I had plans to paint the house, decorate, community service projects, yada yada yada. Uhh... then reality slapped me like an abusive spouse. I was lucky if I brushed my teeth once during the day. I know all you moms out there remembering this stuff (if not going through it at present) are nodding right now.

So - here is a look at my day: woke up at 6:30, showered and made myself presentable, cleaned the whirlpool tub, grabbed a cup of coffee, 2 loads of laundry, got the kids dressed, got the kids fed, made the beds, therapist #1 showed up, took Sophie to school, made arrangements with the directors daughter to interview her for summer help (she's majoring in OT), came back home, cleaned dishes from breakfast, paid a bill, therapist #2 shows up, then therapist #3 showed up - held a meeting of the team discussed strategy and schedules, pick up Sophie from nursery school, meet with therapist #3 privately and then she leaves, then therapist #4 shows up and starts her business.

Amidst the chronic chaos of therapists, my sister called to tell me Mom has pneumonia. I ask her viral or bacterial - she says that they gave her antibiotics, so it is likely bacterial or at least being treated as much. Pneumonia is not good for anyone. It is worse for the elderly. It's bad for someone with COPD chronic obstructive pulmonary disease (asthma/emphysema) and now let's add the lung cancer and pulmonary embolism to the mix. Uugghh.

I notice a beep on the answering machine. Likely got a call when picking up Sophie from pre-school. I check it to find a message from the pediatrician's office. Huh?

I call them back. They tell me they'll call me back. It's games like these that really get on your nerves when you are working with several doctors and trying to let them know you have a life too.

They call back - there was some report from Zach's neurologist office. Something about they don't believe he has epilepsy but that there was some sort of abnormality and they want a follow up appointment. Wow. Pneumonia and some sort of neurological abnormality all within a half hour. Yeah - those bonbons taste great. Why did the neurologist not contact us directly?

Therapist #4 leaves, I rock both kids to sleep for naps. Ahhh, quiet. I start another load of laundry and fold a load, go pick up trash in the yard, get the mail, empty the dishwasher, send a few emails, check my work email, and attempt to process the previous phone messages. I call Steve and tell him what's going on - quiet is over. Zach gave me 25 minutes - Sophie is up too. Uugghh. No break. No lunch. It's almost 3:00. I call Steve back. Can he call the neurologist and see what is up? My heart is wrenched. What is going on? I don't know and I don't have enough information about this "abnormality" to Google it either. Just some sort of "abnormality". Freaking doctors.

No trip to Weggies to get fixins for dinner. I'm still hacking up a lung myself. Is pneumonia contagious? My mom has it and one of my therapists son's has it.

Yeah - this day off was so relaxing. I want a glass of wine. I decide to pray instead - if I could only get Zach to quit wanting me to hold him upside down and get Sophie to quit whining. Yeah - I bet those bonbons would be good.

Guilt ; Medicaid Waivers, Republicanism, and Tomatoes

So what is a Medicaid Waiver? Lord as if I know! My take on it is it is a combination of funds from federal and state resources, that can be used towards someone with a disability and does not need to meet all the Medicaid eligibility requirements - most notably income. How can the money be used? A variety of things, such as uncovered medical expenses (Can we get some help with Zach's $4000 evaluation at Yale?), therapies (maybe we can get some additional ABA not covered under Early Intervention?), environment modifications (I am getting really nervous about the lighting fixtures in his room - could we get some coverage for installing ceiling lighting? I am also very nervous about our 2 story foyer and his interest in climbing the outside of the railing) , adaptive equipment and technology (weighted vests for sensory issues, specialized swings, a service dog!), respite (we really need that break) and likely many other things that I am not aware of.

A part of me feels a tinge odd about this, most likely the extreme Republican influence of my mother shining through. I have to remind myself that for 23 years, Steve and I have been paying into this system and will continue to do so. This may be one of the reasons why my continuing work seems like the right thing to do for now. I have always been a fairly independent person. I like feeling like I can provide for myself, and I think Steve is fairly similar. I had a hard time thinking about quitting work to stay home, because I felt like I would be relying on Steve too much. This is odd, since I was more than please to let Steve quit work in an effort to finish up his PhD while I went to work and paid the health insurance. I think watching my two sisters divorce from rather unscrupulous husbands after dedicating their lives to their marriages and children might have tainted me. Perhaps I am scared to rely on what could be the unreliable. (although I have a lot more faith in my husband than my goofy ex-brother-n-laws) Perhaps there is a certain amount of pride I have, too, in being self sufficient.

Most of my life I got to hear from my siblings how spoiled I was, how I was given so much more than they were. Even if this was true, was it my fault? No. I am not sure what things they mean when they say I was given so much - was it the book box my dad won at work? The 10-speed bike I got for Christmas? Maybe it was all the toys I received for Christmas throughout the years - I don't know what they received - I wasn't around. My college education was my responsibility - although my parents helped out. I repaid them when I received my first job at GM and put the down payment on a new car for them - the first new car they ever owned.
I wish I gave them more - I realize now how much they gave up for me. My parents were blue color types - dad was a fireman and mom was a clerk. Both were smart and hardworking. Both provided more than adequately for me, without a doubt. We had a lovely home in suburban Camillus with air conditioning and cable TV. Quite the luxuries back in the '70's.

I witnessed Mom and Dad and their wanting to provide even as my siblings became adults and had children of their own. They paid for weddings for my sisters, and rehearsal dinners for my brother. They purchased appliances for my siblings as anniversary presents (Mom got a good discount at Sears and Dad was the coupon king), they gave silver place settings for presents, they babysat and chauffeured children to and fro. They were there for my siblings and their children - which is gift enough. I want to be that kind of grandparent myself.

Well, Steve and I paid for our own wedding in its entirety, we paid for our graduate degrees ourselves, our first house and second house and all the appliances and some furniture too. We took hand me downs and used them even though they might not be the most fashionable. I have always been able to work and provide for myself - and I am grateful that I have had the opportunity to. But this is not the case any more.

In order to get what Zach needs - I need help. I need help with knowledge, I need help financially. I cannot let me pride get in the way of helping my son, like I have seen with other people. I have witnessed several parents who do not want to label their children - (autistic, or special needs in general) even though it meant getting their child provided the services they need. If someone told me that my child had to be called a tomato to get what he needed, I would immediately rename Zach to Heinz ketchup.

I have to ask this question of such people: if someone told you that in order to receive a million dollars, would you call your kid a tomato? I have a feeling most would say yes. Well, then why wouldn't you do the same in order to do something that could be the biggest positive influence in your child's life?

Zach is my little tomato.

The Nemo Syndrome: Just Keep Swimming

Our family has had an obsession with the Nemo movie that started with our daughter Sophia. She was a fussy baby, and when she was 2, we got a car with a fancy DVD player in it. The only DVD we owned at the time (boy has that changed) was Finding Nemo. Steve would take her for a drive and watch this movie continually with her, so that I could throw up in the quiet of our home as I was in my first trimester of nausea with Zach. This may sound odd - but I am realizing this movie meant more than just some entertainment for us. A parent did everything in his power with an emphasis of going out of his comfort zone, to find his son - how profound is that in our current situation?

Zach said "baby" and "tea". Not for me - and not for his therapist either. He said it to A. his new sitter yesterday. They were looking at pictures on his computer game, and when images of a baby and a tea party came up - he said both words. I jokingly teased our therapist and asked what we were paying her for, if the babysitter does such good work. :)

Then today, Zach said "slow" and a few other words. The therapist L. called at lunchtime to let me know. She said there were other words - and that when I go home I can look at her binder to see what else he said. WHOA! Isn't that cool??? Progress and a report structure of the progress to boot. This is such a huge relief to me, I had to run down and tell Steve. I hope it made him feel the relief it made me feel.

The marathon of emails and phone calls continue. Today on our list was a call to the Central New York Disabilities Services Office (CNY DSO) to find out about what services Zach can received now that his eligibility determination has been approved. (Do not ask me what that means, I can only guess that New York state has put their stamp of approval of Zach having autism which offers him some sort of credentials when trying to access state funded services. Just a guess though.)

One piece of advice our current SLP has offered is get a Medicaid Waiver. I heard this from her a few times - but had no idea what this meant. So I called the folks at the CNY DSO to find out. The woman I should have talked to was out on vacation, again. I mean this woman takes a lot of vacations, let me tell you. Good for her. Anyhow, she left a number for her supervisor in case of emergency, otherwise for routine matters, she said to call her back March 11. I decided this felt like an emergency so I was calling her boss. This is not like me. Normally, I would shrivel under these circumstances and say, OK I'll wait. I am so glad I didn't. He was very knowledgeable, easy to understand, and helpful. He told me that I needed to get a service coordinator for Medicaid that would help me through the process. I am slowly starting to get this stuff. For whatever group you are going through (Early Intervention, school district, Medicaid) you need a service coordinator to help you traverse the path of that particular group. I am a little slow. I thought that once Zach had a diagnosis there would be one stop shopping someplace - that there would be one person to help us see all the possibilities. This is not how it works.

I have a call into one agency, and will likely call another tomorrow to find one of these service coordinators.

The other thing that I did today that surprised me: I sent a letter to a journalist at the local newspaper. It was unplanned, very spontaneous, and didn't involve spell checking or and proof reading.
---------------------------------------------------------------------------------------------------
I just read your article about "Service dog helps autistic DeWitt first-grader connect at Tecumseh Elementary". I really appreciate the article since our neurologist has just recommended the possibility of a service dog for our son, age 2, who just this past fall was diagnosed with an autism spectrum disorder.

As you may be aware, autism if finding itself a lot in the media lately, which I think is great in an effort to bring about awareness. The number of those diagnosed with autism is on the rise, as you may know. (Currently 1 in 150 children - and 1 in 94 boys) Anyhow, as someone who had no experience with special needs (no one in either my family or my husband's family was special needs) we have found this new experience, or shall we say "journey", very eye-opening. I was wondering if you would be interested in possibly doing some research and a possible story on what going through this experience is like?

The reason I am writing to you, is that, after our brief stint of navigating our son's diagnosis and treatment, I have realized that there is still a lot of misconceptions about the disorder/disease. The misconceptions and issues range from what autism is, what it appears like, who is likely to get it, how to get a diagnosis, what the early signs of autism are, what treatment options are tested, what treatment options are available, and insurance coverage. There are likely many others that I have either not mentioned yet due to my stressed memory, or because we haven't hit them yet because of being so new into the diagnosis and our son's young age.

One of the most ubiquitous of the misconceptions are what autism looks like (a lot of people have said that our son doesn't appear to be autistic because he is not sitting in a corner, rocking and is a smiley, a happy, very cute kid). Another misconception is that diagnosis will be made by just going to regular doctor's appointments - indeed, my husband and I had to push for a diagnosis after getting a lot of "wait and see" type comments. This is a critical issue since it is scientifically proven that early and intense intervention can drastically alter the course of the lives of these children, from requiring services and possible institutionalization, to independent people who don't have to live off the system.

Another issue that we found troublesome was the assumption that once a child is diagnosed, there are services readily available to help. We have found this to not necessarily be the case, and are still awaiting proper services which are to start within the next month . (Please note his services will start almost 6 months after we realized he was autistic, and 4 months after we had a diagnosis which is a huge amount of developmental time in a young child's life.)

There are also some other interesting issues that are actually regarding our area - certain treatment approaches appear to be shunned (school administrators, service coordinators, therapists actually believe them to be harmful) while other approaches that are not scientifically proven are lauded. Please see the discussion on the website where your article is hosted for a bit of discussion about one such therapy. We have found this terribly difficult since we had two different doctors recommend ABA therapy for our son, yet were told that it was unavailable in our area and that it was a perceived as an ineffective and abusivemethod. Other regions of NY don't appear to have these same preconceived notions - such as Rochester, Albany, New York, or even Binghamton.

Other bizarre rumor claims autism is caused by a mother's advanced age, that it is familial or some sort of inbreeding thing (people misconstrue genetic with familial). The orignal theory of autism is that it was caused by the parents neglect,in particular "refridgerator mothers." It's interesting to note that this was an established theory that the medical community accepted for approximately 20 years.

I have also seen people jump all over parents about kids receiving the necessary services and being tax burdens on the system. I find that with the current economic climate, many find comment about waste and abuse for people receiving these services. I myself find this short sighted - many of these services are teaching the children to be independent which will likely save the taxpayers millions per just one child. (see syracuse.com blogs neighbor's west topic about special ed to see how this has manifested itself.)

If you have read this message this far - I thank you. I am sure you are really busy and receive many comments. I am sending this email under a pseudonym and request that you (if you were to determine my identity) keep my identity concealed since I fear that any information that I could provide to you could result in a negative impact on my son - which is exactly what I don't want to happen. However, knowing what we have gone through, I cannot let other parents and children with ASDs (autism spectrum disordesr) out there go without some information that could make a huge difference in their lives.

If you feel you would be intersted in doing such a story - could you email me a response? Or perhaps you could refer me to another journalist at your organization, or elsewhere, that might be interested. I certainly have more information and research to pass on, but didn't want to encumber you with any more information than I already have, if you are not interested or able.

Thanks.
------------------------------------------------------------------------------------------------
I surprised myself that I did this. Don't ask me what caused me to do this. I guess the need to "just keep swimming."

Let's take a break

We don't watch TV. We don't go out to eat. We don't play video games. We don't go out dancing. We don't go to movies. We just don't.

We sleep, go to work, have therapy appointments, do grocery shopping, clean the house, do the laundry, cook (and occasionally eat), deal with appointments, research, and play and interact with the kids. That is our life. We are OK with that - because we are taking care of business.

We tried being social and had friends over the house for dinner and a playdate. Zach would not disconnect himself from me the whole time. This was not conducive to conversation or me cooking or any of the things I intended. This made me and Steve crazy. Who is going to want to hang with us under these conditions?

Zach's current speech language therapist (SLP) will have her last day tomorrow. She is a nice person - and we hoped things would have worked better with her. Despite his lack of progress under her tutelage, I always felt she was trying to help us. She is the one who gave us the "yeah, he probably is autistic" affirmation when no one else would, giving us that early start on our journey. She is also the one who just yesterday told me that through Early Intervention, we were eligible for respite care. Huh? Why did the county never mention this to us? Do they not see us pulling our hair out over my mother's illness, Sophie and her OT, and Zach and the autism? (Which they have been notified of all those things going on in our family.)

Needless to say, I called the service coordinator right away and asked. She is drafting the paperwork. 25 hours of respite for the next 6 months. I'll take it. I don't know when it will kick in, but it will certainly be appreciated.

C. has helped us in ways beyond the SLP role. Let this be another lesson in the good ol' "Life Lessons Handbook" I am writing: Never write off anyone for not meeting certain criteria, adjust the criteria and see if they meet those, while finding someone else to meet the original criteria.

All night long

We decided not to totally sleep deprive Zach after calling a neighbor who is a pediatrician and talking to her about Zach's EEG. Steve let him sleep from 10- 1am. Poor Steve stayed up all night. I got up around 4:30ish - although I didn't sleep well in aniticpation.

Zach did surprisingly well. When he started to become sleepy at 6ish, on came the radio and some dance music. I loved doing my morning calisthenics with him. Boy am I in terrible shape. He became sleepy on the way out the door - but nothing a little candy cane coudln't help out with.

We had to drive through traffic and tough weather, but we got there pretty much on time. We waited for a few minutes. Then the tech came out. After viewing Zach and trying to mark his head where the probes would go - she said "I can tell you this is not going to work." Zach was far from cooperative - but this kid is 1) 2 years old, 2) sleep deprived, 3) in a strange room with a strange person trying to stick stuff to his head, and let's not forget 4) autistic (in order of impact). I told her, "we don't quit that easily." She wasn't wenchy, but I wasn't impressed either. She went on to tell us she wasn't used to doing EEGs on kid this age. Huh? Where did they send us to? Then she put the probes on, and proceeded to tell us it is a good thing she is so experienced, because she normally has to take head measurements to get the probes in precise placement. Great, and she it just winging it. Steve recommended letting him fall asleep with this in mind. She insisted on doing while awake. I do hope there was a reason for that, because it sure did feel like torture. After the probes were in place, Zach continued to cry for around 15 minutes. I thought Steve was going to pass out in pain and lack of sleep. Zach eventually passed out and then we had to wake him up for some sort of strobe light test. I was so glad to get it over with.

We came home, and he is still awake. I forgot to cancel his speech therapy today, so he had a session today - ha ha. Yeah, Wednesday will be his last session with C. As much as he has shown little progress with her, she has been helpful, and confirmed our suspicions about the autism. We will always be grateful to that. Oh - and she just told me that there is supposed to be respite care in early intervention too - funny how they did not offer that to us.

So, he is operating on 4 hours sleep and is watching Word World on PBS right now, jumping up and down after eating some cashews and a banana. He sure is taking the EEG in stride now. Poor Daddy is off to work without a drop of sleep. Hope he is OK.

Hope we get test results soon.

No good deed goes unpunsihed

Feeling that I am grossly behind at work, I decided to come in to work on a Sunday knowing that after having a sleep deprived night tonight, I will likely be a wreck the next few days, not really helping my productivity levels. I even tried to give Steve a break by taking Sophia with me. Well, yup, I was speeding, and yup, the cop felt compelled to have to write me a speeding ticket. My Lord, can my luck get much worse?

Sophie handled the whole thing in stride.
S: "What's going on Momma?"
L: "I was pulled over for speeding."
S: "That policeman is taking a long time."
L: "Yup"
S: "Are we stilling going in to work?"
L: "Yup"
S: "OK. Can I have a fruit snack."
L: "Yup"

No mention of it again.

So here we are at work, and the software I tried to get working is not functioning correctly, and I for the life of me can't figure out why. Maybe if I start that drug habit I have been thinking about I won't feel any pain any more. Ahhh. I'll likely get fired from my job then. Shucks. Guess I'll just have to keep hitting my head against the keyboard.

Momma never told me there would be days like this.

The Meeting

To say I did my best is likely not accurate about the meeting with the county. Although I wasn't nervous - I just didn't have the fight in me. The fact that I had a serious amount of mucous in my head pushing on my nasal cavity and into my cerebral cortex, likely didn't help. Let's just say I didn't have game. That evening during dinner, my temperature spiked up to 102 and left me shivering on the couch for the rest of the night. I haven't had a fever do that to me in ages.

So what did happen?? Well- the county low balled us on the amount of time of services. They made a comment that they felt the 40 hours of recommended services by many sources was "child abuse". When Steve considered this, he thought that 6 months of no services after a diagnosis, with this thought process in mind, would likely be considered "child neglect". I don't think these people have that logical capability, but he is indeed correct. Gosh, he can be so insightful. I am so glad he is playing on our team. I just wish he was more vocal. He said very little during the meeting. I keep in mind that he was sitting around a bunch of women, and likely didn't feel he could be as frank as he would be with the guys at work. However, I think that is exactly what these women do need.

I am used to dealing with men. I am the only female engineer in my division. I understand the way they deal with things, or at least am more used to it. They don't worry about hurting feelings like women do - although in the current work place they do have to maintain a certain composure in order to stay politically correct. Sometimes I feel bad about this - because it makes communications a lot less honest. This whole experience of Zach and his disability has left me in a new realm. It is dominated by women - and the game playing is far different than what I am used to. I am usually one of the best verbally in just about any conversation I have at work. These women have far more practice than I do. And they have a lot more tricks up their sleeves because of this.

Anyhow, I did fight them on the hours for L. our current ABA therapist. I then told them I would be subsidizing whatever they wouldn't give us for her privately, as we thought necessary. They told me we couldn't do this. Pound salt ladies. You cannot tell me what sort of care I can give for my child. I understand that she has a contract in place, and that she is grossly underpaid for what she does. They can take a hike.

The the NEW ABA therapist was at the meeting. I have heard that H. is terrific. They gave her 10 hours. Then they cited all she was to do with those 10 hours. I turned to her during the meeting and asked - "10 hours doesn't sound to me like that is enough time to meet all the things you need to do. Are you OK with this?" To which she politely smiled and nodded. I don't know if this was her game face and if she was just doing the female dance of negotiations, or if she truly felt this was enough time. I do not know this therapist in the least - but will likely field the same question to her in private this week.

So what services will Zach be receiving? 18 hours ABA, 2 hours speech (still don't have a therapist), 2 hours OT, and an hour and a half play group for a grand total of 23.5. I am still looking at possibly hiring a student therapist in the evenings to supplement this. All in all, this actually corresponds to what Yale was recommending for us, so I believe that is why I didn't fight it much more than that. I know that the Lovass technique recommends 40 hours for the most effectiveness, but the folks at Yale met my child and made the recommendation of 20 and I really give them more consideration since they know who my child is. Perhaps that is why I didn't fight this. Perhaps, this felt more about money than it did about receiving the services for my child, and I just felt that along while he is getting something, I'll make sure he is getting what he needs - and if that means I have to pony up some of the $$ - well, we already have been doing that. I also felt that if we could have the appropriate follow-through at home that this would likely tally up to the 40 hours. I am probably wrong. I am not an expert in this stuff. I will definitely talk to our new therapist next week.

Some other notables of the meeting: I was told that we had to meet at the county rather than in our own home, because the new therapist didn't have her child abuse certification yet (does that teach her the appropriate way to abuse a child? ) This made no sense to me - she would not be dealing with my child, we would be having a meeting for gosh sakes. And further more, there would be 5 of us there! Well, somehow, they told me that if I were to meet with her next week at my home, along while there was someone else present besides me (a sitter) that it would be OK for her to be in the house. Huh? Well, we had a sitter at the house right now for the kids - so why couldn't we have met at my home for this meeting? Rationalization vs. real logic. No science degrees in this room I tell you.

Well, I had been notified that there was another couple looking for similar services. They were there at the county right after we were there, with these looks of pain of their faces. Ahhh.... the truth. Well, the odd thing was, I was fine with the meeting at the county building. Why did they have to come up with some bogus rationilization rather than just say "would you mind if we met here? it would make things easier for us." I am not closed minded with this stuff. In fact, I told the program coordinator upon my exit, that I understood there was another set of parents looking for similar services for their child and that I would appreciate if the county could pass along our contact information to them, since we were both going through similar circumstances and could benefit from one another. My friend seemed to think their was a fat chance that this happen. If they were truly trying to help us - I believe this would be a given. *sigh*

I did grandstand about the fact that the professionals working with my child likely new that Zach had autism before we did - and that I would have appreciated that they brought this to our attention sooner, rather than us figuring it out for ourselves. I went on to say that the program coordinator has an advocate role for the child to play, and I would have expected as a professional with such a role, this should have been addressed sooner and we would have certainly appreciated it. I also mentioned that I knew of the difficulties facing these practioners when they know something is more serious, and how do they tell the parent when they are not legally or even professionally qualified to give the diagnosis but know damn well that the kid is autistic? I cannot imagine being the ones to deliver this news. I also know that there are several families out there whose reaction would be denial. But this is about the child's interest, not the uncomfrotable situation this would possibly evoke. With the child's best interest in mind, this should be a given that there should be some reporting structure to alert someone of the possibility of autism. My recommendation was that they train all the therapists in the identification of autism's early signs, give them a requirement to report such signs to the service coordinator, and have the sevice coordinator make the strong recommendations to the parents to have a developmental pediatrician conduct and evaluation to see what is going on. This would have saved us some time and energy and even a bit of grief (or at least gotten the grieiving process started earlier and over with earlier too.) I emphasized that not all services are alike when it comes to kids on the spectrum, and that the likely OT, PT, or Speech Therapy the kid is receiving is not only not enough for a kid on the spectrum, it is highly inadequte since they are not targetting the autism, but a symptom.

I also granstanded on the fact that services cannot be delayed , and that a month of time in a child's first 3 years of life is a huge amount of time to influence their developement, and 6 months even moreso. I discussed the brain's plasticity during these critical years, and how the impact of services now can likely alter the life of the child. They must know this. That is what Early Intervention is about. However, it is likely they are used to more children with developmental delays (speech issues, motor abilities, etc.) than autism;a much bigger beast than these. (Not to say that these items are not important too.)

Wells that all I will dump out of my snot encrusted brain for now. I would really like to talk to that other couple. They looked like someone I would befriend. They looked in pain. This is hard stuff I tell you.

Services begin March 2; 5 months after we realized Zach had autism, 7 months after our speech therapist had an idea he was. *sigh*

A few words and dentistry

I received a call from L. the therapist today and she told me that Zach told my niece "I love you" again today. That's twice he has said it to her. Apparently, Melissa was a little nervous to tell me, because she thought it might upset me. I am so excited: 1) that he said words and 2) that he really must like her to be vocal with her! This warms my heart substantially. I need to tell her that those words are indeed special (more than those with neurotypical kids can ever understand) and that I am so glad he said them to her. Melissa caring for my kids is a VERY important job - she isn't just passing the time with some kids.

The other words he has uttered - a version of banana (banna is how he pronounced it) and he told L. "bye" when she left. YEAH YEAH YEAH.

I saw this article on dentistry and had to laugh. Back in December I cracked a tooth. When I showed up to the dentist - he basically said that I had been clenching my jaw and had ruptured a tooth. He started work on a crown that I later discovered wasn't covered by insurance, and kissed $1200 goodbye. The bad thing about this is, there was no checking to see if I had insurance coverage first. There was no discussion of price. He knew I was under stress because he told me that it appears that I had been clenching my jaw and shattered the tooth, likely due to stress since it hadn't happened before. He then went on to try to sell me some sort of prosthetic night guard to keep me from grinding my teeth at night, the cost? (I did ask after learning the painful lesson the first time) $550. No thanks. A girlfriend of mine called to check in (how great) and told me that I could go to Wal Mart and for $20 get a boil and bite mouth guard that would pretty much be the same thing. I did. Thanks K! My doctor is supposedly a good man - fellow Christian. Yup. You betcha. File this one away for future reference.

I have had contact from an SLP wanting to get in touch with me regarding doing some sort of volunteer work with the autistic. There are so many organizations out there - this was really strange that she mailed me. Well, now what do I do about all the people I have come into contact with who say they are interested in getting involved one way or another. I have tried to contact a parents organization to see if I can help out - I would think that they already have things in place. I am nervous about stepping on anyone's toes and causing problems. Hopefully, they will get back to me soon, and I can begin some work of my own in helping others. I just know that I am green when it comes to this stuff, and I don't want those who are out there doing similar work to be put off if I come in with a host of my own ideas and people. I have to pray on this one.

HURRAY!

So good news to report everyone - the PET scan showed no activity! What does this mean? At present, Mom is cancer free. A mass did show where one of the original masses was, but it was quite a bit smaller, and showed no cancer, so the doctor has determined that it is likely scar tissue. She goes in to her general oncologist in a few weeks and we can address the pulmonary embolism then. Unfortunately the PET scan didn't detect this - it is usually not the tool that they use; it's usually a CT scan. Let's get her off this Coumadin and back on her arthritis meds and up and running!

As the doctor put it, she is "not out of the woods yet." Lung cancer is a combatant and persistent thing - it will likely rear its ugly head again. But today is a day for celebration. Thank you Lord for this reprieve!

May we have a drum roll please....

A week of high drama is to come.

Today, Mom went for her PET scan. PET stands for Positron Emission Tomography and measures abnormal cell activity at the molecular level that can indicate cancer. This will basically tell us if all she went through last summer/early fall was worth it. I feel so selfish for not having even said a prayer for her until last night these last few months. She is all that consumed me this past summer, and Zach has been all I think about since October.

Results will be in tomorrow morning. Please say a prayer for her or send positive vibes or whatever meditative thing you do to wish others peace/luck/health.

The other event this week is Friday - to find out what services the county will be providing for Zach. I just received an email back from the state regarding my initial letter:

------------------------------------------------------------------------------------------------
Dear Dr. and Mrs. Morphet:

Thank you for your email of January 29, 2009, to the Bureau of Early Intervention regarding ABA services for your son.

We very much appreciate your concern over the lack of available ABA services in Onondaga county and have discussed this with AXX XXXXX, the Early Intervention Program Coordinator in Onondaga. Subsequent to our conversations with her, we understand that an ABA provider has been located and should begin providing services to your son by March 2nd. We have also been informed that your ongoing service coordinator has been in contact with you to schedule an IFSP meeting for Friday, February 20th, at which time the IFSP will be amended to include the provision, frequency and duration of ABA services. You will also have an opportunity to meet the new provider.

We hope that these developments have helped to satisfactorily resolve your concerns. If you continue to experience problems with receiving ABA or any other early intervention service, you can discuss them with your ongoing service coordinator, or contact the Bureau of Early Intervention directly at 518-473-7016. As you are probably aware, parents have many rights under the Early Intervention Program, including due process rights for resolving
disagreements about early intervention services. The Early Intervention Program: A Parent's Guide will provide you with more information about due process on pages 26-32.

Thank you again for writing. Please contact the Bureau of Early Intervention if you need additional assistance.
------------------------------------------------------------------------------------------

I feel like a bit of a heel for having written to the state about our experience - but if they had shown us a little more progress or attempts at getting us what we needed, than perhaps I wouldn't have felt compelled to write the letter in the first place. I am a patient person - although I have known some who are more than me, and some who are less. But this should not have required patience - it should have been acted on back in November or even sooner. I am still second guessing all that I do - I think that is just my nature. As I talk to other women now more than I ever have, I wonder if all women tend to do this. It appears Zach is going to get what he needs - and this is a good thing. If I ruffled a few feathers in doing so - than I will just have to live with that - and hopefully they will have the insight as to why I did what I did.

Also - interviewed a babysitter that we will give a shot at this Friday while we go to the county for our appointment. Lots of stuff going on this week for sure. And it is only going to get better - Zach has a sleep deprived EEG (electroencephalogram) next Monday. Yes that means no sleep for us all night. Just a typical day in the M of C House. (Morphet's of Camillus) Wow - life is crazy.

I need Alice

I can no longer keep up - the house is a disaster. I need a cleaning lady NOW! Every time I clean a room, they mess up another one. This is typical stuff I suppose for any mom, right? Steve is at work and I am jealous. I feel like we don't have children, we have terrorists. I go from room to room fearing what disaster I may come upon next. There are toys in every room of the darned house - why is this? The house has dust bunnies big enough to actually fetch a rodent. I am grabbing laundry out of the laundry basket to wear - it's clean, just hasn't made its way onto shelves or into drawers. There is food in the fridge that could very well be a version of probiotics that I never intended. And papers. Oh my gosh. I have more paperwork for Zach than I have had for the tax years ranging from 1986 - 2008. I am buried, and it aint by the Syracuse snow.

For our day off from work - we have an OT appointment and a 2 hour eval for Zach. There may be s speech appointment but it didn't make its way onto the calendar. Will just let that be a surprise for the day.

No updates on Zach - other than he seems to have accepted his therapist L. He didn't cry when she came to the house on Friday. He even let her take him in another room other than the one I was in.

We are to meet with the county this Friday about what is going on. I don't have any idea and sent an email to the program coordinator to give me some ideas of what to expect - particularly, if they found a contract vehicle to throw L. on for us. Why the program coordinator and not our service coordinator? I called our service coordinator and did ask, her response: "I am just the paper pusher at this point." Lovely. I do hope this is not another game.

One thing our new service coordinator did tell me - we were not the only family to request ABA. Hmmm.. When we went to the county you would have thought that we were making requests from the moon. And all along we weren't alone.

Ahhh, Sophie just wrote her name in the dust on the coffee table in the living room and something just sounded like it smashed in my bathroom and my mother just pulled in the driveway. Back to paradise for the insane.

529 Plans

As if college costs are not enough to worry about at present rates, add to that an annual inflation rate for college costs of 7%, and then compound that with the possibility of no college. This is another issue for those of us with special needs kids. I have always been a fiscally responsible sort of gal. How do you plan for a future so uncertain?

I am coming to realize that my job is more important than I thought. I spoke with a mother whose child is ~10 years old. She stayed with her job full time throughout the diagnosis and afterward. I asked her how that was for her - she said working did give her some sanity and a break from it all, but it also gave her sense of peace that her son would have enough financial backing for services and support he will require throughout his lifetime. Ouch. Whoa. Gosh.

I have always been a future planner. I have been living in the "here and now" out of necessity (I am merely trying to exist at some points) and appreciate what that offers you in life. Live for today, right? I always found it very hard not to worry about what the future holds prior to all this. This special needs stuff is bringing out a vast new area of concerns for me.

Who will take the kids if we die? Will they institutionalize Zach? Will Sophie and Zach be separated? How do we ensure he will be given the same consideration we have been ensuring for him knowing that many professionals have let him slip through the cracks on so many things?

I think I need a drink.

Happy Birthday to Me

OK - so the blog is more about me lately than Zach - progress is a little slow lately, but there are some notables. Please indulge me with a little self talk.

So, because Steve and I are visiting a special school today during our lunch hour, my girlfriends at work, (Ed, Ed, and Larry) took me out for a joyride and lunch at Moe's yesterday. I laughed really hard. This is why I like to go to work - they listen to me chit-chat about autism, nod and make eye contact like normal human beings, chime in with something to let me know they aren't tuning me out, and then we go on to talk about something nonsensical and goofy, like Ed's new crown made of gold which we now call his bling-bling. We actually did a cost benefit analysis of various crown material composites overlaying it with the form factor of the crown as part of our discussion. I love being an engineer dork sometimes.

Steve is temporarily taking Wednesdays off so until we find a sitter/nanny. I came home to homemade beefstew and chocolate cake with chocolate frosting. YUM!! He makes quite the little housewife I tell ya'. :) I am so lucky. The cake was GFCF and was awesome (I love being able to share it with both my children)! The kids sang to me (OK Zach just rocked back and forth) and the big news - Zach and Sophie blew out the candles together. He mimicked his sister - yes this is a big deal! YEAH!!!!

Mom's nerve block was yesterday. She sounded good when I talked to her on the phone. I will go over and visit her tonight to see how she is really doing and to tell her the news about Zach and his blowing. So cool.

So - yeah - how am I celebrating my birthday? Well, for starters, I awoke in a panic at 3:30 am in the morning remembering something I was supposed to do for work. Then at 4:01 am I hosed our computer trying to download software for my job. Then at 4:16 am I was in bed with Zach as he woke up crying. Then at 5:49 am after feeding Zach a muffin and some milk, he finally went back to sleep. Then Steve awoke and grunted at me to go take a shower because he wanted to get into work on time for a change. I still had yet to finish the thing I was supposed to do for work. ** sigh**

I got in to work and got rained on (and a little hail too) as I a had to traverse between the two buildings on our "campus" and all the umbrellas were stationed only in one of the buildings. Needless to say, I got wet. I've had several facebook greetings and several workmates wish me a happy birthday. I talked to my program manager about getting another office - I may even score a new work laptop. Then I went to the others on the project and had to give a "my bad" explanation on why I messed up on something. The nodded although they probably wanted to kick me off the planet.

Tomorrow my nieces have invited me out for Thai food and a movie. Wow. I haven't been out to a movie in about 5 years.

We received a call from the county stating that they believe they have something in place for us for an ABA approach that could start March 2. WHOA! We love L., our privately funded therapist, and I will not lose her. I am hoping the county figured out a way to integrate her in with all this.

So Zach hasn't shown a huge vocabulary increase (in fact none at all) but the blowing - this is really cool. Our therapist has been taking pictures of objects around the house that she will print out and we are going to use as a picture exchange sort of communication. I am looking forward to how this will work - I think it may be helpful.

So that's it for now. I am unusually upbeat today. I was thinking this was due to my birthday. But then I realized that spending a great evening with my beautiful family and sharing a meal with them only to have Zach mimic his sister is probably why I am really walking on cloud nine. Happy Birthday Me!

What a day to log on to syracuse.com

So I almost never have any time to read any news anymore. I decided to log on to syracuse.com to see what was going on in the area. Not much. Snow is melting. So then I decide to log on to the forums section which is a community billboard sort of thing. I like to see what is going on - there were some comments about a new restaurant that opened up I found interesting. And then there was this post that glared at me. I couldn't believe that in all the time I haven't looked at this website - I get on now to find the following post:
------------------------------------------------------------------------------------------------
I just found out that there is a special education class at the high school that has 12 students, 1 teacher and 10 teaching assistants!! What's with that? If these children are that needy, why are they at the high school? My understanding is that some of these children are very significantly impaired, both physically and mentally. I certainly believe that when appropriate, we should keep special needs children in their local school. But when their needs are impacting students who are on an academic tract... well it's wrong! From what I have heard from a number of students, some classes have had to be altered due to some of these students. I agree these students need to be educated as much as possible, but my understanding is that they are entitled to "appropriate" education. I know that these students do have special needs, but 11 adults for 12 students, that's just not right! AND if their being in regular ed classes are having negative impacts on classes, well that's wrong too. BOCES has a wonderful program for these individuals that is totally suited for them. It's one thing if teaching assistants are in classes to help students with academics, but from what my understanding is that these teaching assistants are babysitting. Our tax dollars at work!
-------------------------------------------------------------------------------------------------
This post was then followed up with several others, many of them regurgitating the fact that costs are high, times are tough, these kids are disruptive, etc.
I had to post. I will no longer read this forum again. I think I know all that I need to know about people in my community.
MY POST:
--------As someone who moved to the WG school district a little over a year ago, AND someone who just had their life shattered by finding out that their 2 year old is autistic, I am glad to see where my fellow neighbors stand on this issue. My husband and I are high level professionals who pay way above average taxes for this area. We are the technical people with graduate degrees that Syracuse is always saying they need. We pay lots of income taxes, property taxes, school taxes. We have been involved in various community projects and volunteer work. To see that when times are tough, people are ready to take out the meek for the mediocre just kills me. I do not want children's education disrupted, that is why they need a 1:1 aid. If the child is disruptive with an aid, than they should be removed from the class and put into another environment, I agree. Bussing the kid into another program is not always the answer, nor is it the most cost effective. These issues are taken on a case be case basis, and the school district does so with the intent to keep costs at a minimum I assure you. Many other areas in the country where autism rates are high (notably Boston, Southern California, and the research triangle in NC) have inclusion classes that are terrific programs and have parents who are quite often very well educated themselves having their typical children benefit greatly for the experience. Perhaps if some of your typical children pay attention to their classmates with special needs they could truly do something beneficial in this world (determining what causes autism anyone?) and having respect and empathy for others (which I see so lacking in many people around here) which will build a better society for all, and not just be a bunch of accountants in the cogs of mediocrity.

I was an honors student whose education was disrupted more often than not by the social nastiness of teenagers and apathetic attitude of my peers. I likely would have benefited from having more interaction with those who needed special ed for no other reason than to appreciate what I was given in this life.

May none of you ever have to bear the pain parents have to endure when their child requires such services and have to hear from those who were lucky enough to escape this world without incident of how much it costs. Autism affects 1:150 (and may very well be on the rise). These numbers will only increase. You will have to deal with these children in society one way or another - so might I suggest you start getting to know them and their parents in a school environment?

----------------------------------------------------------------------------------------
Needless to say - this is an anonymous forum - so I was blasted with comments about inbreeding and other belligerencies. I will no longer read the forum. This is the world we live in. God supposedly created these people. He didn't say I had to like them, just that I had to love them.

The strange things kids do...

Strange sleeping positions.
Zach loves the comfort of a cold sink.
Why must she put everything in her mouth!!!!
(and why do the kids get to use the jacuzzi tub way more than we do?)

White Elephants and Compassion

So, a family birthday party was held yesterday for 6 of us! 2 nieces, a nephew, my BIL, and aunt, and myself with birthdays in the Jan16-Feb 13 range. Zach did not enjoy it initially; he barely knows who any of the people are besides me, Steve, Sophie, and my niece Melissa. So he cried a lot and held onto me for dear life. Zach needs exposure to such social situations, but the situations need to be a little more consistent for him to get much out of it. I doubt this will happen.

I feel not many people want to be around us, or at least me much. All I do is talk autism. I am hoping it is just a phase of this portion of the marathon. Most of my friends are generous and lend me their ears , a supportive comment, and a sympathetic glance. Some others in my life avoid eye contact and actually leave the room. I guess I am supposed to act like life is normal and talk politics, latest news events, and other trivia for the sake of their comfort. Sorry. I am in the heat of battle right now - didn't watch the Grammy's.

Growing up, I was the youngest of 4, with a decent disparity in age between me and my siblings. They all pretty much went through their having children phases roughly at the same time. Nearly every Sunday, my parents had the crew over for dinner, and the cousins got to spend a decent amount of time with one another. I loved having them over and the crazy ways they would destroy the house and scream and laugh. We don't get together very much anymore. Everybody going their own directions I suppose.

My brother and brother-in-law mocked the cupcakes we brought for everyone to try that Zach could eat. The recipe was from a parade magazine article, and happened to be GFCF when using margarine as opposed to butter for a substitution. Why did they have to make this out to be some sort of freak fest? Then when discussing the dirt cake recipe my sister made, and Oreo cookies were mentioned - Sophie asked what an Oreo was. Once again - strange looks from my family probably thinking - "how could they have never given the poor child an Oreo?" And me thinking, hydrogenated oil, high fructose corn, and artificial flavorings. I am such the odd man out.

So, then, the typical stories of the past surface. One I haven't heard in awhile resurfaced - the story of how when Leanne was two, the family went out to dinner and ended up calling a family friend to babysit since Leanne disrupted dinner for everyone else. ha ha ha Look at what a bad child I was. I was 2! How many people bring a 2 year old out to a nice dinner? My response was quick and simply: "Well, I guess I have my payback now." Smiles faded, eyes looked down. No one laughed. The white elephant in the room.

I spent the rest of the party on the phone with a parent of a 10 year old boy with autism who live in Massachusetts. I have been trying to get in touch with his parents for awhile so I took the call. It was like talking to myself: she was fast and furious in her speech, fairly articulate, and reasonably funny. It was good to hear a parent who was surviving this stuff. I found out that their school district paid for a one-on-0ne ABA aid for their son all the way through elementary school. They are concerned about middle school and have not idea what will happen there. Wow. Looks like we should start looking for jobs there. Wish I was kidding.

I never realized how unkind people can be - and possible myself too. As I was on therapy appointment # 3 with Zach this morning, I realized 2/3 of the way through the appt that I hard forgotten to pick up Sophie from nursery school. I rushed there like a bat out of you know where. As I literally ran into the room to get her, one of her teacher's pushed her to me purposely avoiding eye contact and not saying a word to me or Sophie. I guess she was thinking "what a bad mother - she's been late twice these past few months." I found the behavior extremely cold. Nice christian school, eh?
I immediately asked Sophie if she was upset. "No, Momma, why?"
Me to Sophie: "Do you know I love you?"
Sophie: "Of course Momma! I love you too. Where's Zachie?"
Me: "At his special school."
Sophie:"Can I go with you to get him?"
Me: "Sure. Let's roll."

She seem unfazed by the event. So apparently, I just annoyed this teacher with my transgression, and it had nothing to do with the affect on my child. Well, there goes your end of the year present lady! :)

I don't mean to complain - but I want to know how many other people out there are dealing with 2 children under 4, one dxed with ASD and receiving 20 hours of therapy a week, the other dxed with sensory disorder, a parent with cancer, no grandfathers to help out, a part time job that involves highly technical information that is used to safeguard our country, and the loss of two loved ones within the past year. Cut me some slack! I know I am forgetful lately, I know I appear slow and out of it - how many others would take this stuff in stride? I have taken myself out of all my commitments other than those that are required to take care of my family right now and I am stilling messing up. I know. It is the best I can do right now.

Most people don't know what my family is going through right now. But this is a fundamental lesson I have learned from all of this: ask people if they are OK and if they need help, don't just treat them like they are selfish or lazy no good bums. Some, indeed, might be selfish or lazy no good bums, but, I guarantee a few are just struggling with life right now and will really appreciate someone taking the time to notice and to ask.

Aunt Cindy strikes

So - it was great to receive a package from Aunt Cindy - she sent me these really ugly and terribly comfortable lined Crocs - I love 'em! Yes I may look like a darned fool, but my feet are comfortable and warm.

She also sent a treasure of books and videos for the kids. I love the Harold and the Purple Crayon video. The kids also love the Dinosaur video.

Aunt Cindy has actually read some of the books that were on my wish list at amazon.com - plus picked a few up for me. Even though she is several hundred miles away in Denver, I can feel her warmth and care even in this 10 degree weather. We wish she lived near us! She was a lot of fun at Christmas time - the kids absolutely love her - and she tolerated the GFCF cookies we made! Yup - Steve made butter free and wheat free sugar cookies this past Christmastime, gingerbread men, and turban cookies (the peanut butter ones with the Hershey kisses). And almost all were eaten!

As for the Hershey kisses - Steve bought a mold off the internet and made his own dairy free chocolate kisses for Zach. This is a father who can be so-o-o cool at times!

So today, at MyGym, there were 25 kids and is was nuts. Zach basically did not want to leave my arms. He did OK at circle time, although I basically did hand-over-hand to get him to do all the exercises they requested. But he seemed to enjoy that. Let's hope we didn't pick up any major illnesses while there.

Then off to a playdate at a friends house who have kids the same age. D. was able to engage Zach with some Thomas colorforms to put on the window. He played with these a good chunck of the time. I really loved playing on their train table with the two boys. K. who is Zach's age grabbed a few trains and yelled "mine" which was great for Zach to see. The two boys played at the table together (parallel play) for a half hour. I loved that Zach could see what a NT kid is like. D. and J. said we should get together regularly when I noticed how good this was for Z. Gosh, I have great friends.

So, the plan is to get the kids away from napping, and into an earlier bedtime so that I can have afternoon playdates for them. Any ideas on how to accomplish this?

Zach found his toes!

Lately, I have found my pace of life to be a little too fast - and have been overwhelmed, and feeling run down. I didn't expect to see the finish line anytime soon, but it feels as though we are putting forth a good amount of effort lately, and achieving very little. After a bit of this, your motivation starts to wane, and everything becomes a struggle, even the simplest of actions feels exhausting.

So - yesterday - off to work I went with my terrific niece Melissa to watch the kids, and our therapist L. to do her job. Zach was screaming - I mean really screaming as I left. I had tears in my eyes because I just didn't know what was going to happen - was he going to throw up? Was he going to bite one of them? Would he bang his head? How much could these two young women handle?

While driving down 690, the dreaded cell phone rang. I saw it was from L. Uh oh. No way. How bad is this going to be? She gave me the scoop: Zach kept on raging for around 20 minutes, while L. tried to contain him. Zach's session was, to say the least, unsuccessful, however, he collapsed in her arms and fell asleep. She tried to wake him, but couldn't. He was so upset, that he was still 3-inhale gasping in his sleep. Oh gosh. Then L. offered to come back in the afternoon at 3 if that was OK with me. Wow - she was willing to do that? I mean I know she is getting paid and all - but this is far from any pleasant work experience. Uh OK.

How would he be with Melissa? So I went to work - and my thoughts were all about Zach. I was barely able to concentrate. How does Steve do it so well? He says he struggles too - but he is much better than I am. I am always in awe of him that way. The guy is damn smart and dedicated in all things that he does. I am so glad he is my husband, and more importantly, I am so glad he is the Dad to my kids.

Well, the phone rang again at 4:40. Oh no - it was L. again. Yikes. "Hello? What? He had a great session? He didn't cry when you came to the house? He cried when you went to leave? No way!" "What's that? No way -he said a new word!?! " L. was tickling Zach's feet and telling him she was tickling his toes, she did it over and over, and at one point he held up his foot and said "toes" . HURRAY!!!!!!

Such a little gesture, but just what I needed to give me a little more energy to get other things done. I came home from work to find Sophie and Zach curled on Melissa's lap, which gave me this warm feeling that was close to actually getting cuddled to. I remember Melissa as a child, her smile, her goofiness, her sweetness. How she has grown - and how my son loves her. She probably has little understanding of what a big deal this is. He is a dash picky on who he accepts into his inner circle.

These two young woman and their love and resolve have proven to be a tremendous comfort to me and Steve. They will likely never understand what that means to the heart of a parent wanting someone to care for their children, especially when there are special needs involved. This gave me hope for their generation. This gave me hope for our life too.

Grumpy little boy, mean old men

So- Zach's fever broke over 2 days ago, and he has been extremely grumpy lately. Eye contact is greatly diminished once again, and he has muttered a few words, but no where near what he was up to this past November. Like I said before, this was one of my fears (that he would regress again that is) and the experts told me it was highly unlikely to happen again. I don't know what good it would be to call them and let them know what happened, but I may do just that, just in order to get it on his records.

Despite his grumpiness, he had an OK session with the therapist. I was shocked when I heard him go from screaming to an occasional giggle. L. said the session went OK, and that he engaged with her a bit.

I am wondering if there could be progression in one area (perhaps his motor development) that may end up causing the lack of language. I have noticed this sort of pattern in Sophie in her 4 years on Earth, that some things look like they are lagging for a bit, only to be regained after another area went through some new phase or growth. In fact, I can recall even a growth spurt could seem to put developmental issues into a plateau. But this is more than a plateau, he has actually stopped language again. I hope time will tell. I am still interested in looking into if there could be other allergies creating a problem for him.

As part of ABA therapy, you have to come up with incentives to motivate the kids to do their work. You start off with tangibles hopefully to lead into praise alone as the only incentive. I thought a first pass of incentives would include some food: (chocolate chips and pretzels), his Thomas the Train wooden train, bubbles, his shape sorter, holding him upside down, and of course tickles and hugs. I let L. know these. Hopefully in the next few weeks, will see what really delivers.

He is becoming more difficult now - which emphasizes the language deficit. I have a feeling his tantrums and crying episodes are largely linked to the fact that he observes more in the world, wants more of the world, yet hasn't figured out how to express it. My poor little guy. This really is wearing us down a bit. My sister-in-law had named the kids "Velcro and Elmer's" after wtinessing how "attached" they are to me. Zach literally wants me to hold him every waking second of the day. This is wearing thin- and makes it really difficult to get done even the most basic chores - it's like having a 30 pound newborn - and you can't use the Bjorn to keep your hands free! Needless to say, the house aint looking to pretty lately.

I knew as he became older that the situation in some ways would become more difficult. For the most part, Zach's autism is undetectable to the passer by - he is really cute. But his smile is not as frequent as he gets older, he has begun to scream and squelch along with tantruming, and he is always in my arms or pulling on me. It would become more and more noticeable I can see now, all because his frustration level is growing. My poor little guy!

Called and advocate yesterday in hopes of finding a way to get services for Zach and was pretty saddened by the outcome of the situation, which basically can be summed up as follows: "Yeah - that's too bad. That's the way it is. Once you are processed through the Central New York Disabilities Services Office, you can contact our agency to provide respite care." Not exactly the advocacy I was looking for. She herself was a parent of an autistic child who wanted ABA and drove to a nearby city to get it. I wonder if the system wore her down. I wonder if it will do the same to me.

With this in mind - I ask you to lend a hand in this advocacy thing - I will likely be distributing an email to this affect within the next few days - but will post about this now.

--------------------------------
From Autism Speaks: Although there has been no increase in the state supplement for 20 years, this year the New York Executive Budget is proposing to cut the state supplement to Social Security Insurance (SSI) payments for New Yorkers who are aged, blind or have a disability, such as autism. The proposed legislation would cut benefits by over 25% for individuals and couples living alone in the community and 45-70% for those living with other and are scheduled to occur in June 2009.

From Leanne: Did you know that most parents of autistic kids end up going down to one job in order to manage the care (and paperwork, research, phone calls, etc.) of their child? Do you know at this same time they end up paying out of pocket expenses for their child's care that usually ends up in the thousands? See the report finding here. Of course I know this - we already have spent over $5100 out of our pocket on Zach's care since November of last year, and we just began the private therapist that insurance will not cover, nor does it looke like we can get reimbursed for through our reimbursement account. I have taken a few leaves of absence, and am cutting my schedule that will result in a loss of pretax income of around $17,000 a year. I want to give everyone a look at the real numbers to get a feel for the financial stress this puts us under. And we are lucky, because we can still do these things.

What about those "working class" blue collar folks? It makes my blood boil to know that there are many kids not receiving the services they should be, and parents are forsaking their futures (I know of a few families who wiped out their retirement 401Ks) in an effort to get their kids the services they need. This is not about what is best for the child or what the parents want - this is about what the kids need in order to become self-sufficient adults at some point in their lives. I know the investment now saves the taxpayers a lot later on when we start talking about continuation of services, group homes, possible institutionalization that has been shown to be avoided when the necessary therapy interventions are put in place. People can be so shortsighted.

So - I ask each of you that reads this to contact your legislators and ask them to let them know you don't support this. I know we need to reduce spending, but lets get rid of pork-barrel superfluous type expenses - not for things that help those who need it the most! To look up your legislators go to: http://www.autismvotes.org/c.frKNI3PCImE/b.3932687/k.F652/Find_My_Legislators/siteapps/advocacy/search.aspx. I will likely create a form letter and distribute this by the end of this month for those who would like to help.

Need to release.... and a big thank you

So it's 3:00 am and I cannot sleep. I am really frustrated with some people in my life, and very hurt. Whereas some people have been nothing short of terrific in offering help or checking in with us on how things are going, there are some who have done nothing, people we really counted on.

I remember reading of my friend M's trials and tribulations of people who did and did not offer her support as she discovered her son's autism. I remember feeling bad about how some of her friends and family seemed to offer her no support whatsoever. Now, I was not necessarily the best friend to her in the world, but I tried to stay in touch and let her know I was listening, if nothing else. As I knew little about autism at the time, I tried to read up on it to understand. Indeed, this little research that I did may be just why I was able to do such an early dx on Zach. Funny, how these things work out, eh?

I can recall M. explaining that so many of her friends turned out to be fair weather ones, and that family members were in disbelief of what she was going through. I remember feeling that that would never happen to me. hmmmph.

To those of you reading this blog - I can assure you that you are likely not the people who I am saddened by. I think the people that I am talking about haven't even taken the time to log on to the blog and check it out, they are too caught up in their "busy" lives. I used to think I was busy, too, before all this. Afterall, I had a career, two young children, some extracurricular activities, a house, a running hobby, and a widowed mother keeping me on my toes. Ha ha - I didn't have a clue.

Steve and I don't have full cable TV. We don't watch it - not that we don't want to. We haven't seen an adult (no I don't mean porno - just nothing of the Disney/Barney/Care Bear variety) movie in God knows how long. I have not run in over 5 months - and I used to 4 times a week. The last book I read was about integrative medicine approaches of autism. (and the one before that was about autism in some sort of variety or another, and the one before that was about something to do with autism, and you get my drift.) There are no self indulgences right now, with the the exception of a chocolate bar I bought at Aldis.

I remember going out to dinner, the symphony, a play, running a race, skiing, taking the dog for a walk through the neighborhood. I really do miss those things. But I believe that one day we will be able to enjoy those things again. Right now I need to do what I need to do: research, phone calls, letters, read books, talk to therapists, hound the county about services, make homemade waffles that are GFCF, look into supplements, join some parent groups, attend conferences and lectures, not get fired from my job, love my husband and kids, and pray.

Yesterday, Zach's fever broke, and we decided that it would nice to go out on a 40 degree day and play in the snow. The kids loved it. Sophie and Steve made a really lame snowman - but had fun doing so. Zach had a hard time walking through the deep snow (didn't we all!) but loved sticking his mittened hand in and then sticking a glob of snow in his mouth. (No yellow snow I assure you.) It felt so good to get outside. I realized the mood when we returned back in the house was much more jovial - even Zach seemed to get some relief out of getting some fresh air. Cabin fever is such a problem in CNY. By the way - we are up to 140" of snow for the year.

If you made it this far, thanks for reading my gripe session. I may just have to write certain people off in my life right now - I cannot afford to be hurt by their careless inaction, indeed, there is much too much to do right now with the little energy I have. But so many of you have been great, and have energized me through simple well wishes and checking in. I thank you!

Now, I haven't talked to my friend M. in awhile- there is something I have to do today, I think I will give her a call and ask her how things are going. Oh - I better wait until at least 9 am. :)