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.
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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.
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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*