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:
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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?