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:
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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!
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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?

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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.

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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. :)