Merry Christmas! Get me some ZipFizz!

Christmas Cards went out late. Oh yeah, and the card was actually the card from last year that never got sent. Yup. We had a theme for this year: No Stress. Or at least diminished stress. Of course, that was not the reality in the least. But the holiday was not to blame.

After several weeks of waiting for Zach's extended school year to begin, we had to push a little harder for it to happen. For those not into the special ed terms - I'll give you my version as it applies to our situation: Zach goes to a typical classroom kindergarten where it is only half day and has his own special ed teacher and TA to support him. Since Zach receives 9 1/2 hour sessions a week of therapy (that includes speech, occupational and physical therapy) , and for the fact that these sessions are "pull outs" meaning he receives this services outside the classroom, we had agreed that at least a few times a week, these sessions would be appended to his day, so after school, they would run for instance a speech therapy session as opposed to taking him out of class to do it. We were told it would take 3 to 4 weeks to get schedules settled.

About one month into the school year, I had heard nothing from the school about extended day. So I began to inquire - schedules were still be settled, and the new PT was just hired. More time passed, and some phone messages were left, one of which was from the PT who said he would run one extended day session. More time elapsed and it still hadn't happened.

I went to Zach's special education teacher and asked her for his therapy schedule and was told she didn't know what it was. I then asked her to look into what was going on with the extended day. A week and a half passed - no comment. A few more days pass - and it was parent teacher conferences. The special ed teacher said extended day was being worked on.

About a week before Thanksgiving I went to the principal in person to discuss. After Thanksgiving I received a message saying they could get one session a week as extended day. She told me that she had met with Zach's team who discussed that his being pulled out constantly from the classroom would not impact him academically.

I told the principal that this was not what we had agreed to at the CSE meeting - and that I would be pulling out the recording that we made. She seemed to be indifferent that I had them digitally recorded, agreeing and the special education director even suggesting the extended day in the first place. An email was then sent to the special education director - a partial transcript of the meeting sent and we told them where on the recording to listen. The special education director said she would look into it.

Steve left his business trip early and when he got back in town, he made a B-line straight to the superintendent's office where he requested an in person meeting. An hour after Steve made that trip, we received an email from the special education director stating they were working on it and that extended day would start the following week.

We were also told that next time, we should speak up sooner.

There is more to this story and I will share it in the next post. Now perhaps my not tapping the keys has some explanation for you all.

The fall is a particularly difficult time for me, I have SAD (Seasonal Affective Disorder) where the change of weather and diminished natural light levels leave me very lethargic, plus the demands of the holidays, and the fact that several of my most unhappy events in my life happened during this time of the year (Dad had his heart attack a few days before Christmas, Buddy died a few days before Christmas, my sexual assault took place at this time of the year, we received Zach's diagnosis at this time of the year) leave me with little desire to be chipper to say the least.

Worrying about my kids just adds to the stuff. But I want them to have the joy that children should be able to have at the holidays. So, I do my best to figure out what it takes for me to get my butt out of bed in the morning and keep myself moving through the day. Coffee no longer makes the cut. Even 4 cups worth, although it does make my hands do this creepy shaking thing that had me getting nervous about Parkinson's. Exercise has always helped - but I have had a knee issue, so I have laid low on the running. But Pilates on Monday nights with my sister have been helpful, although one day a week of exercise only does so much. I have also tried to get more rest. LOL Okay - I just stopped laughing. Yeah - well, a dog who eats socks and then hurls and a child who sleep seems to be optional as a life sustaining requirement don't make for the best contributors to positive sleeping experiences for Momma and Daddy.

For this reason, I am really grateful to BJs and the sample lady who upon walking down the aisle with my cord of toilet paper and barrel of laundry detergent offered me a drink of some pink fizzy stuff. She made me listen to a 90 second blurb before I received my bottle, but alas, there it was a water bottle that had this miracle powder added to it that when combined formed a cotton candy colored beverage. And it tasted OK. And hoo haa - I was awake, and calm, and not jittery.

Since this moment in time, I have introduced the colorful fizzy making substance to my dear husband who has also embraced its' charms. ZipFizz is our current wonder drug for getting us through these times. B12, caffeine and 10 calories.

WARNING: TMI ALERT - DISCUSSING SICK CHILDREN ***********************
Steve was away a week, and of course my children decide this is when it is most important to get the stomach bug. While Steve wheeled and dealed (LOL) his way at a convention - I was joyously cleaning bodily fluids of all types from my germ laden home. My favorite part of the story is that we now have Lucky. And being that she is a large dog, we have to keep the toilet covers down so as to avoid her lapping up the succulent waters of the porcelain bowl. (Blek!)

What I never felt the need to discuss was to Sophia, how when she got sick at 2:36 in the morning (and kids always seem to do this in the middle of the night, don't they?) that when she ran into the bathroom to take care of business that despite her aim at the bowl, if you don't lift the cover up, well, we all know about vector forces from high school physics, right? Yup. Splashback. It was totally disgusting, only to be made worse that while I was trying to soothe my poor sick daughter, my large young pup came in and considered this dinner time. If you think I didn't hurl a sentiment or two at my husband during this time, then you just don't know me very well. NOTE: No children were exposed to profanities were launched during this tirade in fr
at this time, just lots of "oh... you owe me...."

The bug was fairly short lived (thank the Lord!) and minus missing a few days at school, readily remedied with time and a good washing machine.

END OF TMI STORY********************************************************

During Steve's departure, with sick children and crazed puppy underfoot, I managed to get all the Christmas decorations up myself - with a little help from my nephew. Christmas is a hard time for Steve - so I wanted to get as much done with him out of the house as possible.

I claimed victory over the prelit Christmas tree (5 strands of lights were out) , Grandpa's nativity set was repainted and setup up, and all the other accoutrements set in place. I was so proud of myself! Certainly getting setup for Christmas would help put us in the spirit - and indeed I think it helped.

We didn't make all the cookies, but we did make 300 pierogies with a friend. Christmas cards were sent out on Christmas Eve - oh yeah - and as I previously mentioned, they actually contained the Christmas Cards from the previous year that were never sent. Presents were mostly purchased online. Things were far from perfect, but things were great. No yelling. No frantic anything. Just letting the chips fall where they may.

Our Christmas Miracle came in the most interesting of places. Originally I thought I would write about the fact that at Steve's company Christmas party, I ran into an old college chum who I found out also has a son with autism. During our discussion his wife shared the name of a therapist that they think could be very helpful to Zach. Zach's speech has deteriorated once again. He is saying less, but more pronounced is his lack of pronunciation. His lack of communication skills has led me to start researching and consulting with professionals on alternative and augmentative communication technologies for him. With Zach unable to request his wants and discuss his needs, and the fact that at age 5 we have given therapies nearly 4 years to do this, we have begun to lose a little hope that he will communicate verbally. Sometimes I wonder if he is over in some other place and not wanting to communicate his needs, likes, dislikes. Should I just let him be?

So the other day, I sat reading a book to Zach while he cuddled up with me. He doesn't always appear as the most attentive child during these times, but after reading stories of children who seemed in another world later recounting in detail things from their pre-communication days, I keep it up. I often wonder why I write the things I do in this blog. Quite often it really is just a stream of consciousness. Well, I, totally unaware, began to bite my nails as I have reported in this blog is one of my most disgusting habits. Yes, stress levels are so high that reading a book brings me to this. Anyhow, Zach reached over and pushed my hand from my mouth. I was surprised to say the least, but I wasn't sure if it was a purposeful gesture or not. So I once again pretended to bite my nails, and lo' and behold, the kid grabbed my hand and put it in my lap. I was shocked. This is not some uncaring, unaware kid on my hands.

While I am not sure what exactly this means, it did help add some of that fuel to help me get over some of my dejected feelings about the difficulties with his school situation.Again, to many this might not seem significant, and to be honest, I am not exactly sure how to interpret this. Perhaps the only conclusion I have made from this, and likely the most significant, is that we need to keep those expectations high and we need to keep on working. My boy is growing, learning, and developing. And he does communicate some things.

Keeping our hopes high in Camillus...

Tricks and Treats

Things are going fairly well in our household lately. Zach and Sophie went trick-or-treating together and it was a cold, yet precipitation free evening with a nice moon. We had a lot of fun. I was thrilled to have such a great evening with my family. Everyone had so much fun.

Zach was once again Thomas - OK OK - I know- isn't this the second or third year for that? Yes. It is such a convenient costume ( can be worn over bulky winter coats if needed in our tropical Syracuse climate) and he still loves Thomas. Plus - having worn it before, I think he sort of gets the point since we aren't able to verbally explain to him what Halloween is.

Steve took the kids off to the adjacent neighbors houses. Then he decided to pass out candy while our a family friend and Sophie took off in one direction and Zach and I went off in the other. He had a blast! He was so much fun. He rang the doorbells (too many times if I didn't pay attention - oops!) and when prompted said trick-or-treat. When people put the candy low for him to grab his own - he took it and dropped it in his bag. We did 0.7 miles - both sides! We at some point ran into Sophie and a friend and finished up with them. She was so darned cute even though her wig on her costume kept falling off her head. I think she really loved being able to go out with her brother.

Now this might not sound like anything significant to a lot of you, it sounds just like a typical Halloween, right? That is what makes it so significant to us. Whenever we don't have to think too much about what we have to do, that makes life so much easier for us. Unlike some of Zach's other developments, what I appreciated about this is that it was effortless, there was no preparation beyond what I did for Sophia - OK your right, even less preparation since I punted on the costume for him. :)

Pictures you ask? Ahhh errr.... yeah, well like I said, "no thinking".

Zach has recently begun chewing on the collars of his shirts and the cuffs of his sleeves. In behavioral terms, we have put this on "extinction". This means, for the meantime, that we ignore it and see what happens. I am wondering if his 6 year molars are pushing in and causing him to do this since he never did this before. Now as for Sophia - she is like me - likes to chew on things ALL the time. My chronic nail biting is a huge embarrassment for me - and she has a lighter version of it that started roughly 2 years ago. It makes me so sad that she might have learned this from me.

I had an adult in my life that was also a finger nail biter. I can recall trying to discuss this with her and she wouldn't talk about it. I remember going to my doctor and asking for help - to which he responded that out of all the bad habits to have - this one was benign comparatively. He went on to explain that if I would force myself into quitting I would likely take on a new behavior to replace it - and something with more consequences, like eating or smoking.

I have to tell you folks, knowing how my nail biting is worse than ever and done primarily at home, I have been wondering if I have been to blame for my kids oral fixations - a combination of genes and modelling. But then I recall the time when I began to chew my nails. I was on my way to a violin lesson, and looked down to see slightly long nails - nothing excessive for the normal kid - but for a violin player too much. My violin teacher was known to pull out the nail clippers right during lessons, and I can recall a snip that was a little to close to the quick. So I can recall taking care of business en route to the lesson. It's funny that I realize that might have been the beginning of the habit. Nervousness was paired with nail biting.

Yes, I over think things. All the time. I waste time doing it.

Sophie is busy this fall and I am almost happy that soccer is over for now. Whew! Sophie is enjoying all her activities - Girl Scouts, ballet, French, religious education. We are in preparation for her first penance. Unfortunately, our parish priest is very ill, and won't be able to attend the actual service. The instruction for first penance has been parent instructed which means that I have procrastinated and onyl begun working on it this past week when she is due to make her first penance December 5th.

I have discussed my struggles with faith before - but know in my heart that I want to give Sophia the sense of safety that I had from growing up within the Church. Although during these past few years especially after a priest who we had begun to befriend left the area, I have felt sort of deserted by our Church community. Having gone to them for help, we ended up being requested to set up the help ourselves for the church. I studied disability ministry a bit and realized that I could not afford to overextend myself and further. I was left feeling bitter. Had it not been for reading other mothers' blogs who had the same thing happen - I would have taken it more personally. I chalked it up once again to those not affected not "getting it".

Reading the materials for this sacrament has been very emotional for me. I feel like I have always had a very deep belief in a lot of the teachings of the Church and I struggle with the fact that I always felt that others don't take the teachings as serious as I did. This sacrament has always left me a little dumbfounded though - the emphasis on apologizing to those you hurt was never emphasized strongly enough in my opinion. Either way - I am not sure if I am connecting with God or just my core beliefs, but this journey Sophia is travelling has certainly brought up a lot of emotions. I always seem to take things more seriously - could this more "black and white" view of things be one of those genetic things that I passed on to my kids?

Thinking I was volunteering to pass out donuts, I signed up to work at Sophie's Penance Retreat. I showed up to find out I would actually be teaching a small class. (!!!) Oops. It was really no big deal - and extremely well organized. There were several breaks for us parent instructors and I had the opportunity to speak with some of the women who organized the retreat. In the end - I met a woman who was very open to seeing if we could get some of the kids with autism to receive their sacraments - particularly First Communion. She was a sassy smart Mom with whom I felt really comfortable. She likely doesn't know how her understanding and "can do" attitude gave me such a sense of faith again.

Now on to Thanksgiving we go....

Fall Joy

We are 2 months into school now - and I have managed a few trips into the school to see how things are going in my kids' classes. Zach is in a typical classroom, in fact he has the same teacher Sophia had. And he and Sophia get to go to the same school. I love that - it's obviously convenient for picking the kids up, knowing the staff and all, but what really tickles me is that Sophie loves to see Zach in the hall and give him a hug.

Zach is not able to tell me how is day was due to his limited communication. The teacher occasionally sends me an email or writes in his take home notebook about any concerns. These were frequent at the onset of the year, and have greatly diminished as time has gone on. When I originally was thinking - I can't ask Zach how his day went, I then thought back to Sophia and how I when I would ask her, she would answer "Good" I then would ask: "What did you do?" only to receive the inevitable: "I don't know."

I remember looking into this, and getting advice about asking more specific questions: "What was your favorite thing you did today?" Sophie: "All of it." Then I would ask: "What was your least favorite part?" Sophie: "I liked it all, Momma!" Me: "Who did you play with?" Sophia: "Everyone." Me: "Can you show me something you learned today?" Sophia: "Mom - I'm tired." Yup - so much for that expert internet advice.

In the fact that I was not able to get my uber-communicationaly-abled daughter to give me one ounce of information on command about her day, I let it go. What I did take note of was her behavior: she was happy and wanted to go to school. Was she learning? I suppose. Sophia had a good command of the information required for kindergarten prior to entrance. What she was always lacking was the fine motor skills - and we had been working on that for a l-o-n-g time as we continue to do so. But one other note: she came home with some phone numbers of girls who wanted playdates. I checked in with the teacher and her OT periodically, and let the rest go. She was healthy, happy, and progressing.

So here I am with Zach. I ask him how is day was and I sometimes get a "Goot." response, most likely rote from running "How are you?" in discrete trials in his home program. Having learned from Sophia, I paid attention to his behavior: he was happy and wanted to go to school. We went to the Family Night Bookfair at the school: Zach seemed happy to go and didn't show even a wince at entering the school - and in fact walked to his classroom with his Daddy and seemed frustrated when Steve would not let him enter the room. Did he want to show us where he spent his day??

The Jog-A-Thon is a fundraiser the school PTA does to raise funds for their activities at teh year. It involves the kids doing laps in the bus circle in front of the school and people paying donations per lap. Both my kids did it. Zach was silly and distracted and I ended up running the circle with him a bunch of times to give the Special Education teacher a break. But he did it - and a few of his classmates (particularly one precious little Julianne) cheered him on, even took his hand to encourage him to keep going.

Then on Columbus Day - Babcia Morphet and I decided to take Zach to the zoo while Sophia had a field trip with her Girl Scout troop. Did I happen to mention that I think Sophia got into the best troop with the greatest leader in the area? I had decided after our last trip to the zoo where Steve was chastised for having Zach in a stroller by a fellow patron - that with Babcia there to help - we would see how far Zach could walk on his own. And yes - some stranger did say something rude to Steve about having such an old child in a stroller. UUggghh.

So, off we went, it was a beautiful fall day. And we were managing pretty darn well. Babcia and I were so excited to come upon 3 baby Siberian tigers - they were so cute! We spent time at the Asian elephant exhibit - something the Syracuse is known for. As we were spending time in this area - I heard a little voice say: "Hi Zach!" I look over and a little boy was standing next to Zach. I asked him: "Honey, did you hear me call him Zach?" to which the little boy responded: "No - Zach is in my class with me!" What a thrill this was to experience. And that sort of was a clincher for me - a classmate thought enough of Zach to say hello to him. This outside incident made me feel good about the unknown of what was taking place in his classroom.

Zach's special education teacher and speech language pathologist also spent a few hours here at our house and met with one of Zach's private paraprofessionals. They got to tune into what sorts of things we work on here to help support what was going on in the classroom, and what strategies have the biggest pay off with motivating him.

Outside of school, Zach began to enjoy the monkey bars in our backyard these past few weeks. One day, the weather was cold, it was pouring rain out, and I heard the alarm for the door opening go off. There Zach was - running off into the rainy cold day right to the playset. I donned my jacket and rainboots and met him where we went on to do 10 iterations of going across the monkey bars in the 54 degree pouring rain. I cannot even imagine what the neighbors must think. But he was so happy.

We have had some really decent weather these past few weeks and Zach's interest in climbing and the monkey bars has continued. I feel so connected to him this way - I LOVED climbing when I was a kid - and still like to try and navigate my way up an old maple when given the chance. The joy of fitting your foot into a crook to gain leverage to raise yourself up another 12" from the ground can feel empowering and freeing. That's my boy.

Silence and Sharing

The value of a life had caused me to become mute. Oh, I had ideas, I had thoughts, we had experiences, of failure and joy, that could be shared. But I wasn't really sure what the value of that was. I wasn't sure what the value of sharing some of our intimate experiences was to myself, or to others. Most importantly I wasn't sure what it meant to Zach.

I, by most accounts, am not a fun person. That does not mean I don't have a sense of humor. Indeed, it is one of the things that helps me get through the day some days. However, if you want someone who is going to make you feel good or show you a good time, be the life of the party - yeah, well, what can I say? Not it.

I am analytical- seeing what can go wrong, the faults, the possibilities of failure. That is what likely drew me to engineering. This does not mean I am a negative person- I do not believe all is lost, that all people stink, that everything is ending and all is hopeless. I believe not all is at is appears, that details matter, that fine tuning can make big changes, that we shouldn't accept something as fact because it is convenient, as so often we all do. I want to build positive changes, I want to create things that have yet to be seen, I want to influence others to see their potential. I don't think that makes me negative at all. But fun? Yeah, well, not really.

I also believe that as much as I want to influence others in an effort to create positive change, I also accept that there are those beyond my reach - that my take on life doesn't jive with theirs. There are those who do not like what I do. There are those insulted by my posts. There are those who think that I am exploiting Zachary as I share our lives' story.

My sister recently pointed out that I have always been a person who who put herself out there. My mother, nearly 40 years my senior has never seen the value in discussing personal issues, as was the norm for her generation. My siblings, considerably older than myself vary in this capacity but generally tend to be more private in their personal dealings. Be assured, you do not see the whole picture of my family, some things are still left private, while others we feel need to be expressed.

I have contemplated over and over why I started this blog and what it has become, and what I want it to be. I initially was taking those snapshots of life in an effort to preserve memories - I used to take monthly shots of the kids and highlight the latest developmental milestones reached or activities involved in. Of course, this could have stayed that way, mostly facts and joy. But the milestones weren't being reached. What was I going to write about?

The participation in playdates and activities continued for one, but not the other. There was something wrong, there were these physical illness symptoms, requests for help from professionals, who gave no answers initially, and a bunch of people I deeply loved who had no guidance to offer, they had not been down this path before.

I realized that there were still milestones, just not ones as predicted for those who are typical. I felt alone especially when I would share our joys of small steps of achievement and people sometimes laughed. Or worse, they looked disappointed. I started to feel an overwhelming sense of being on a ship out to sea with no crew- a disconnect from the suburban upper middle class that I had long been associated with. No longer could I call a friend and say "Hey - does your kid do this weird thing?" only to be reassured that yes indeed, their kid did, or no, but they know so and so who did that.

I cannot even begin to tell you what this isolation feels like. Even amongst those in the special needs community - when you have a child unable to easily communicate this puts you into a minority of minorities. I have read varying reports - the statistics read that 25-30% of kids with autism are non-verbal. While others are worried about if their child can hold a socially appropriate, pragmatically correct conversation, I am hoping that when Zach is ill, that he can somehow indicate what is hurting. Both real concerns - but a distinct level of difference.

Something in life I have realized recently: you cannot make all the people happy any of the time. I have realized that when I share Zach's wins in life; his accomplishments, his development, there are those who think I am being a braggart. Furthermore, when I share Zach's needs and deviations, they think I am being a attention seeking, looking for pity, demeaning Zach whiner. The fact is - sometimes I do like to brag about my beautiful boy. And sometimes I do want someone to say: "Hey - sounds tough, I care, I'm here for you guys, we're listening." What I don't expect is for anyone to go out of there way to make our lives better - we are trying to do that for ourselves. And most importantly, what I hope to do for others is to let them know if they are on a similar path - those feelings, of regret, sorrow, grief, fear as well as joy, acceptance, anger, and fight are part of this journey with special needs. I will not apologize for my feelings. I will not apologize for trying to reach out to others who many be experiencing the same thing.

I am a better person because of the connections I have made from writing and reading about the journey of special needs. I have read blog posts of others that made me cry because they wrote exactly what I was feeling - something I might not have been able to express suddenly in front of my eyes, most likely from another mother, sharing an intimate piece of herself. They made me feel so much less alone. Sometimes they gave me practical information on strategies of working with Zach.

And when once in awhile someone not on our path makes some effort to show support when we are struggling - I cannot tell you what that means to our family. Those are the moments that help me regain some faith when I so often question why certain things are happening.

I am being true to myself by continuing this blog. I am better for it and I know it helps me be a better mother. I will likely offend, turn off, or otherwise irritate some. It is not my intention to hurt anyone, especially my children. And I feel that I am doing far more good here than any bad. I also have the support of my husband, who also has our children's best interest at heart.

For those who will continue to be upset by my blog, I feel that we have likely never had your support in the first place, and I ask that you not read it, for your own and our own good. I sometimes wonder if the people I upset likely have some lingering issues in their own lifethat may require some introspection. My silence will not make those go away.

I have always taken heat over my easy expression of things some think are better left unsaid. I expect those who have no regard for me or my families interests to attack when they don't like what I have said. I have hoped that those who love us to to respectfully express themselves if they are concerned about what I write, and some have.

Zach's autism is not something I am ashamed of. My discussion of our journey is to help bring about awareness of what one child's life looks like that has this diagnosis - because each case, each child is different from another. I read once somewhere: "We are all united by our shared humanity. But we are divided by our individuality." I feel that by talking about those differences, we can alleviate some of the fear of the unknown that frequently creates problems.

I wish everyone peace in this world. And I know nearly everyone, even those who don't like my blog, want to see Zach be happy. In an effort to extend to you what having the support of people not affected by autism can do for those who are - I would like to share two videos that have meant a lot to people with kids with ASD.


Peace.

The Things You Learn in a Decade; Revisiting Our Hopes and Expectations

Twelve years ago I was alone and confused. Then came Steven. And I was no longer alone. Confused on the other hand? Well, 10 years later and I can positively attest that I am quite honestly more confused than ever. But I digress, or is that regress???

Our wedding had it's foibles; the cake, my dress, and the fact that the photographer forgot to show up, only one month after the tragedies of September 11. Yet, it was a beautiful fall day. A day of family and friends and celebration. It seems like a world away from where we are now.
Life has certainly dealt us a hand I didn't anticipate. Which made me go back and read this...

Hope and Expectations, by Leanne Boulware dated October 2001

We all dream. We have dreams of success, influence, and true love. I can remember dreaming that I would change the world.

I would engage the corporate world and be a highly accomplished engineer.

I would deal with the world’s evils and bring about some notion of peace

Perhaps I would even save the environment.

Alas, I had accepted my fate as an ordinary engineer, with simple accomplishments.

But then there was this dream of a perfect love, a soul mate. After many forlorn years of “turning over every stone” only to find dirt, and kissing frogs only to have them remain frogs, I had all but given up. I had this sense of who I was looking for, but never seemed to meet him. People told me I might be too picky, but I knew not to accept anything less. Even my father, just a month before his passing, advised me to not sell short.

I had actually gotten to the point where I prayed to God that if I was intended to be alone all my life, that he would take away the longing in my heart and the feeling that there was indeed someone out there for me. And then there was you. Little did I know that you had said your own prayer – that God bring someone to you.

So what does dreaming have to do with hopes and expectations? Well, all that I dreamed, and all that I had hoped for came true the day I met you. Life has never been the same. I know the world has not changed, but yet it all feels different. I can face the day knowing the world is not what I would like it to be, but that with you by my side, we will make it through. It doesn’t seem to matter anymore that I am not climbing corporate ladders, or solving world problems. I now see the world through another set of eyes – one that I hope to have guide me through the rest of my life – especially when my vision may become clouded with the occasional harsh reality of life.

You have made my dreams come true – and all that I can hope for in return is that I can be all that you want me to be. I will encourage you when you are tired, I will connect with you when you may tend to withdraw, I will feed you when you are hungry, and I will be by your side for everything else. In other words, I hope to be all those things that you are to me, and do all the things that you have done for me. Throughout the planning of this wedding, you have been nothing short of amazing – so now I promise you, I will see you through your Ph.D. with the same love and dedication you have shown me.

You will be a wonderful husband, I just know it. You will be a fantastic father to our children – 7 nieces and nephews who adore you already can attest to that!

Two computer geeks – analytical and pessimists – yet our favorite movie, “Lost Horizon”, is about what we both dream about “Shangri La”. That pretty much sums it up – you see – we’re both dreamers, with old souls– and we are right where we were meant to be – we are together. I can’t wait to see what life has in store for us!

So, thank you for loving me so extraordinarily. Till the end of time, my love, we will be.

That letter was written after those tragic days of Sept 11 at the request of our priest, Father Champlin who would go on to read it at our ceremony. Steve and I actually were at work and saw the plane hit the second tower together. I worked with intelligence personnel, and witnessed the feelings of responsibility for this tragedy by people who felt they should have done more. People most people don't know exist and spend their time protecting us. I see how the mothers of this world are likely in that same position - so important but yet invisible, unless the extremes are met; an unbelievable win or when tragedy strikes.

I went on to work for the Department of Homeland Security. I saw the world filled with people who had good intentions, some who were capable, some who were interested , some who were getting their years in. Such and important mission - yet the array of people in this world didn't necessarily create the best outcomes. How I have seen this with my own precious Zach and the people who have been set in place to support him. At least now I feel I have more of a voice in my concerns.

Steve did, of course, go on to complete his PhD - and even won an award for a prestigious dissertation, under the threat of me being a sugar momma and 6 months pregnant I might add. He has gone on to a great career, with presentations at conferences, awards, and the possibility of creating a technology that could make a difference.

It was easy in those early days to think of what would be; life was not yet filled with the hard work of actually doing it. Note to those contemplating marriage and family: even the best of marriages requires hard work.

Steve has seen me in my darkest hour. And he has stood by me. I am sure he thought about running away. I know I have. But he hasn't.

If we were to go off to SingleLand and he had his pick - he would likely not choose me right now. I am quite sure no one would for that matter. I am almost certifiably a flake and a loon - things are falling off my plate about as fast as they land there and I have a tendency to get involved in things I shouldn't. My recent realization is that I am not sure if this is any different than I have ever been. It's just the consequences never involved things so precious. And that is what made me realize a bit about who I am - things I am not proud of, things I am trying to address, things that Steve has seen all along, and he has tried to help, he has tried to support me, he has never chastised or humiliated me by pointing it out. He just stands with me. Every day. Facing whatever comes our way. While I can say our romantic love has certainly waned a bit in these busy, crazy times - I know that Steve and I have a connection and a friendship that will endure 'til the end of time.

He has given me the two most amazing children that have made me so happy. He has supported our family with his hard work and dedication, both in his career, and at home. He has given his children the precious gift of a strong yet nurturing self-sacrificing father.

While life has thrown us things I never in a million years would have expected, Steve has held steadfast, standing by my side. Of all the things I didn't understand and know back then, it is clear to me, that I did know a few things: namely? How to spot a good man.

Happy 10th Anniversary, Steven.

We are so Lucky!

After Zach was diagnosed, we went on the next set of doctors visits - one of them being to a neurologist. Dr B recommended that we look into a therapy dog for Zach. Of course I was right on that (especially after losing Buddy)- but after seeing the $13,000 price tag - I was not jumping for joy. A few families managed to get funds from Medicaid or other public funds for these dogs. Some held fundraising parties. We decided that there were other things that needed our resources at that time. Not to mention, we were still mourning the loss of Buddy and needed some time.



Yes, this is a picture of our beautiful puppy, appropriately named Lucky. She was named by one little girl Sophia. The day before Sophia's birthday parties - we received a call from a rescue group that they were interested in coming to see our house. My cousins Karen, John and Heather had told us about the group after they brought their dog Griffin over to meet our kids to help us see if a dog was possible for us - and if so - what kind. We indeed like the golden retriever breed after trying out a bunch of breeds to include a rottweiler, boxer, and newfoundland.

I had submitted an application during the late spring and hoped for a nice potty trained 1 year old to cross our threshold one day, although I though it unlikely. Instead, we received a 10 week old who has managed to piddle on carpeting that we will need to replace because there is only so much a carpet steamer can do. And we just love her!

We had just discussed how we thought it was time for a dog in the house yet how finances were tight. In a separate conversation I had told Steve that I was going to have to cut back on some of the advocacy and iPad work- because although it was so-o-o worthwhile, free doesn't pay the bills. I felt a bit of karma working for us. The rescue group has not charged us a dime for adoption fees, and has even paid for her veterinarian care.

With this in mind - I am asking my readers to consider a donation to support this wonderful group who have given us another light in our house.
GRRCNY P. O. Box 735 Jamesville, NY 13078
Please let them know that your donation is in recognition of their work for our family. Please click on the picture to the right to bring you to their website for more details.

It is so nice to have her here. Sophia is totally in love with her. Her name? Sophia came home from French camp with a hand written request: Chère maman, on peut appeler le chien "Lucky"? My hopes for "Sadie" and Steve's for "Sheldon" were dashed. Next dog.

Now, as to be expected, Zach basically ignored her if he paid her any mind at all. That is until she discovered him and the ability to pull down his pants like he was a little Coppertone Baby. Then he became annoyed with her. But I did not fear. I knew they would figure it out. Zach has been slowly engaging with her, more and more every day. As of the past week, I love to watch him pet her. While he can be a little rough - he poked her in the eye when trying to touch her nose and grabs at her tail when she scurries by, she has not minded one bit. She no longer tries to undress him. She brings her toys to him. He doesn't quite know what to do about that yet. They have even cuddled a few times, although not for long, because they, along with Sophia, are about the most active creatures in the world.

As I pondered her name and mourned that Sadie didn't make the cut, I knowingly asked Sophia: "Why'd you name her Lucky?" Her response: "Well, we're lucky to have her Mom. " what I didn't expect was when she continued: "We're lucky to all be together." And so we are! Bonne chance!

My Beautiful Boy Turns 5!!!

He's in kindergarten and he is now 5. Wow. How did we get here so fast?

It's 10:23, morning therapy has been cancelled, he's eating potato chips (OK - I admit I had a few myself) and a chocolate chip muffin and we are both still in our pajamas. That is how we roll in this house: birthdays are a day to break from all the requirements and duties of our life. In other words, we are lazy slobs who like junk food.

I spent last evening in tears. If you search around the web, you will read about "windows of opportunity" with autism. These are time periods that have been suggested to be crucial to the outcomes of children who are diagnosed early. The first oft cited window is 0-3 years. The next is 5. SLAM! Game over, right?

Now, let's get one thing straight right off the bat: I am not sad that Zach has only come so far and hasn't become the child I wish him to be. He is exactly who I want him to be - happy and involved. I hope those are the two things that make him feel fulfilled - my ultimate goal. (Thank you Ms. Cutler for your help with me understanding that...)

My tears came from self pity - a frustration with myself: I no longer work, have a graduate level education, have supposedly dedicated myself to my children, and yet I have failed him; his communication skills are extremely behind.

Something in me tells me he is much more capable than his existing skill set. Gut feeling? To a good extent yes. But a gut feeling with some research/science and anecdotal evidence behind it: he has a lot of the requisite skills for speech: his articulation patterns are mostly age appropriate, his receptive language is growing, he has several single words and a few phrases. The issue? He has yet to understand the purpose of language - most likely because I have not put into place the appropriate environment to realize the importance of communication. Without that, the gap will never close, and in fact, it may be growing wider.

Now I want to express to my readers - I do not cry. Well, OK I do - but very rarely. Compared to other women I have experienced - I am really pretty much on the low end of the scale when it comes to tears. The hours of crying last night that I couldn't control was just a shock for me. Why last night?

I guess I am also grieving the fact that he likely doesn't understand what a birthday is. I am in the process of trying to update him on when people ask him how old he is to say "five" and not "four" anymore. This morning my greeting of "Happy Birthday" to him was met with a blank stare. I wonder if the phone will ring with anyone from my family to wish him sentiments for the day. This brings me more sadness. (After I wrote this - Babcia Boulware did call - HURRAY!)

He enjoys birthday parties (see picture at right from birthday #3) - with his favorite part being everyone around the table singing with the candles on the cake. My selfish grief has yet to yield way to me even plan a party. I am hoping this post will help me clear my head to get out of this funk and figure out a way to celebrate the life that is definitely worth celebrating. I am so glad to have Zach in my life, autism or not. Nothing will ever be taken for granted like I see so many others do with those they love. Autism makes you realize that life holds no guarantees, yet it also makes you realize there is plenty of reason to hope.

He is my boy wonder. He has accomplished things that I didn't think he would, yet left other things out there to still be reached. He has helped me to gain insight into others. I have a life with purpose - when I see so many floundering that way - trying to find it in things that likely won't give them the soul satisfaction they are yearning.

My short term goal: figure out a way to celebrate this day for my beautiful boy. My long term goal: I won't cry at the next birthday. Zachary: You are a joy in my life. In a world of power struggles and lies, deceit and selfishness, you find your joy in dancing to a favorite song, swinging on a swing, and chocolate - things that will likely remain unchanged- simple things that so many people ignore.

Happy 5th birthday Zach!

Oh Glorious Swinging Colortful Surprises

Once again Zach has managed to keep us on our toes. After years of trying to get Zach to expressively and receptively communicate his colors, just 2 weeks before starting kindergarten, he demonstrated it for us. It amazed me how all that effort and he just casually did it for us one day.

And then there was yesterday, once again, we have been trying to get Zach to independently swing for so long. Instead, he would hop on and do what I had nicknamed the "pendulum" where he would swing back and forth and all around like a weight at the end of a string. Semi-hazardous I might - so we had reduced our play set to one swing for quite awhile just to avoid trips to the local medical emergency facilities.

Well yesterday, he hopped on one swing. And I hopped on the other. I made a game of him bumping into me - and teasingly yelled "bump" every time we collided. Although I laughed at every bump, he did not like this. Then it happened. He just began to pump and go straight! I was like "holy cow". And once again - my kid surprised the snot out of me. My mother in law pulled up into the driveway and I called to her - she was surprised as well and yelled a "way to go Zachary" to him. I asked her to stand watch so I could grab the video camera. And now my dear readers, I present to you, my independent swinging in a safe way son in his next video: Zach swinging on a star....

Navel gazing

If you think I haven't had much to write about, well , you would most likely be incorrect. I stopped blogging because in the world of prioritizing life with only 24 hours in a day, it felt too self indulgent. I love to write. I love to express myself. I find that I much better represent myself with the written word any day over any other form. I feel like it makes me slow down, not worry (too much) about how I might be taken, no interference of my quirks or body language confusing people as to what I mean, my hypersensitivity to others not affecting what I mean to say. I am ultimately a boring person, but here, I hold my readers hostage to the typeface. There are no worries if someone else is doing it better than me (there are better writers as my 11th grade English teacher would be certain to assure you) and if I am boring you (I don't have to see you glance at your watch). You see, I love to write, yet felt, much like everything else in my life, that my talent was mediocre at best and not to be pursued seriously. That pesky 11th grade English teacher will likely never leave my head. I am sure many an English teacher snicker or sneer at my prose. So without true talent, I felt my pleasure just didn't make it into what is important for the family.

I soon realized that my pleasure was not from my ability to master the art of writing, but my desire to express feelings that if left unsaid, would lead me to Prozac. I realized my story isn't necessarily special. Some of our experiences at times feel extraordinary. As I listen to Sophia and her eloquence and understanding of spoken language, I realize that she inspires me - not just as my child, but as someone who can clearly express their view of the world - and her passions. I am not sure if I am capable of that for others. But I know that Zach needs his voice to be heard - and his skills are just terrible that way. It would be great if people could see the world from his point of view, but, at least for now, few will. Communication still alludes him. Oh, he has a few words and gestures, even a phrase or two. But I know (as only a mother can) that he has a lot more to express about life. And it is a voice worth hearing, especially in this day and age. I am very blessed to have a child who has such joy with life. Indeed, Zach is one of the happiest people I have ever met. And he has a smile that makes my fears go away. He has a smile (with a few small dimples I might add) that I have seen bring joy to others. Indeed, he does possess a certain charisma. Yes, he is my kid and I am biased. But more than a few people have told me the same - and I think the reason is that nobody expects a kid with autism, "non-verbal" and immature in near all things social, to do that. Disability is supposed to mean pain, hardship, loneliness. Autism is supposed to mean aloofness and inability to connect. A blue eyed blond kid with dimples? That sort of blows that image.

He needs a voice and he needs people to understand his journey. Until he can tell you himself, I'll be here to fill in.

When Your Tired and You Know it Snap Your Fingers??

He's been crying for 45 minutes, straight. This is the point in the day when Momma starts to get a little wiggy. DD (dear daughter) is whining for everything under the sun, Zach is tired and not liking the demands placed on him by the speech therapist, Momma went to bed late last night - so we basically have a house full of cranky people right now all trying to coexist. How do you think that works? Not real well.

We have discovered that Zach can indeed meltdown. He has had little tantrums in the past - I would say nothing more unusual than another typical child his age, with the exception of he cannot tell me specifically what has his goat. Then came Friday the 10th. And that afternoon we had 1 hours and 25 minutes of straight crying - big tears, sobs, so loud, especially for my little man, and he would throw himself into the couch (you know the big billowy stuffed one that he spread peanut butter over a few times these last few months) face first so that his sobs would be muffled. I swear he was trying to spare us from his agony. I am afraid it didn't work as the next 20 hours were spent with him miserable - although the crying did eventually cease.

At times like this it is difficult to write those fluffy little posts that, although real, don't permeate quite as deeply into the crevices of what are life can be like at times. Exhaustion. Fear. Sorrow. All mixed together. And unlike so many other things that cause those feelings, there is no cliche that applies to help get us through.

The cliches I grew up with are likely different than the ones you did - I think each person clings to a set of them that combined become a mantra for living. Maybe it is a great philosopher who goes deep into places you wish you could - sure they might appear scholarly, after all academia thinks so. Personally, I think a lot of them did a little too much me time and not enough hard living.

Some cliches run in families. People seem to like to recite what was once told to them. This is true in my family and my husband's. In my family a few come to mind at the moment: "Little children, little problems. Big children, big problems." Nope. Doesn't apply here - autism changed that. My personal favorite: "This too shall pass." What a crock. Autism certainly blows this one outta the water. Ask any caring parent to an ASD child their biggest problem - the fear of what will happen to their child once they are gone - time does not take care of this issue. Time exacerbates it. While some people are not as profoundly affected as others, for those of us who are looking at a lifetime of autism that will require support, we get scared. I've seen the injustice of Zach not receiving the services and care that have been contractually stipulated for him and I am a fairly strong advocate. What the heck is gonna happen when I am not here?

So amongst the flow of muddy waters we are now treading - Zach has acquired a new stim - he has begun to snap his fingers. On his own. Not having ever been shown how to. A skill, I might add, that is usually developed between the ages of 6 and 8. *sigh*

He is reading a few words now although getting him to learn the Dolch sight words (the, and, I, me, my, him, make, etc.) the school will be working on is of little interest to him, and thus, is not something he is picking up on quickly.

Going off to sleep now. The cries have subsided for now. Time to make hay...

ORANGE Alert

Today's alert level is ORANGE. While no injuries were sustained, capital damage has been determined. According to the maternal authority (MA): rice had been tracked throughout carpeted family room while she took a phone communication from a team member. While MA cleaned said rice catastrophe, chocolate peanut butter was then smeared onto family room couch.

Suspect is said to be adorable short male, 3' 8", blond, blue eyes, with enchanting smile. Accomplices are said to be suspect's OT and PT who helped to provide the suspect with skills to open doors (refrigerator) and jars (peanut butter) and are being sought for questioning. According to expert profilers, the suspect will likely strike again within the same environment. MA, although sustaining no permanent injuries, should be monitored for requiring stress relief.

Currently, MA will require 2 glasses of a grape fermented beverage this evening. Please all be on alert for possible future instances. MA will need to be monitored for how much support and shoulders to cry on she will need.

Some days are just too much to handle straight.

Today's Snowflake: Ben

Today's snowflake is a bit unusual. This was not a submission by a parent, but rather a video I found after learning a bit about this fellow from an agency that provides support, Onondaga Community Living.

This family is awesome in how they have come together to support this wonderful man. He is even a businessman! He has a website where he sells his furniture. Go check it out!

My favorite line from this video clip comes from his aid:

"...the greatest gift of all is the relationship, being present."

The power of appropriate support is amazing! Way to go Ben!

BEN from Mahala Gaylord on Vimeo.

Ben Lehr

Ben even has a web site. Yes - he has his own business! I am so excited by this that I have to share with others - check out their website.

http://benlehrfurniture.com/default.aspx

She finally asked

Sophia, without being asked or even commanded to, made her bed the last few days. This warranted a trip to Michael's, avec coupon for 40% off, where we would graciously award her the Squinkies set of her choice. Those of you who personally know Sophia know that small things and rubbery textured things are some of her favorite items, for whatever sensory reason why. Small rubbery things intended as toys, aha Squinkies, are just down right irresistible to her.

So off, after dinner, the family went to Michael's. But first Mom and Dad decided to go to Bath Bed and Beyond to pick up a canister of CO2 for our wonderful seltzer maker. Have you seen these things? I got one for my birthday from my awesome SIL Cindy and MIL. Terribly cool - we use it all the time!

Sophia has known for sometime that Zach has autism. She even understands some of the details - or symptoms of autism. But that doesn't mean she gets it. Nor do I for that matter. After our purchase at Bed Bath and Beyond we were off to Michael's. On our way out the door, Sophia said "Hey Mom - it's not that far away - can we walk to Michael's?" I was struck that she wasn't being lazy and preferred to walk. The boys went off by car and Sophia and I went off by foot.

Was this a purposed move to get me alone? I am not sure. But it wasn't going to stay innocent for long. Here is the conversation that immediately followed and, frankly, left me, of all people, speechless:

Sophia: "Mom, is autism a bad thing?"
me: "ummmm"
Sophia: "All those people at our house all the time. Are we trying to train the autism out of Zach?"
me: "uhhhh"

The only thing I managed to stammer out was that Zach was different, and that I loved him, autism or not, that being different does not make him less of a person nor less lovable.

But it left me with a distaste in my mouth. I felt that all this time, I had forgotten some basic fundamentals behind all this. At first, I was trying to beat autism - there was that time window that we were trying to beat. We are slowly about to exit that window now - and no where near where I had hoped. He still is not talking, he still has little understanding of what I am saying, he is more and more obviously different than his peers as time goes on.

These questions Sophie asked, simple as they may be, with obvious good choices in how I could have answered them, were left unanswered. This wasn't about sounding good. I can speak eloquently about these things. But I am tired of facades. I need this to be real, true. I wasn't going to lie to her about such a profound and important concept, that in all honesty, I need to answer for myself.

What am I fighting for? What is the goal here? What are we trying to achieve? What do the therapists, teachers, all the practitioners involved think is happening here? Are they just working for a paycheck like I did all those years as an engineer when I was definitely not working on things I felt passionate about? Is this all a scam? Would he be better left alone to evolve and develop on his own will? What is my role in all this? Is autism bad or is my desire to make him as "normal" as possible the problem?

Sophia's questions, honest and important, and I said nothing meaningful back. I was left numb. And that was not the worst of it.

I am a fireman's daughter

A childhood friend once pointed out that she thought that my family was the quintessential American family growing up, pointing to the fact that I am a fireman's daughter. And I am. I never realized that fact is so meaningful to who I am. But it is.

Daddy was a tall, sometimes intimidating man, with a southern drawl, a decent temper, and a heart as big as they come. And this brawny 6 foot 3 guy drank tea, loved to shop, and teared up when watching the movie "My Girl" with me.

For the most part, my childhood was great. I was mostly unaware of the dangers Daddy faced - and he didn't share them. In retrospect, I realize being awakened at 2 am with a pizza in hand from Park West that he brought after a trip to the bar in the restaurant was likely a bad day that he couldn't talk about. I think now did someone die? Was a child hurt?

In the second grade there was a terrible fire in the city. Chris Kovac (*name changed for privacy's sake) was in my class with me. His dad was in the same fire company as my dad. But one difference, his dad didn't make it home from the fire that day. I think that was one of the last fire calls my father was ever on. I went all through school with Chris occasionally talking to him, but not friends. A glance at him made me realize what I had in this life. I realize now I often felt guilty that my dad was OK and this prevented me from ever truly conversing with Chris.

We didn't have a lot of money. But we did OK. There were some lean times. I came later in life to my folks, so as I got older, finances were more stabilized and things weren't as tough. But still, there was not a lot of money. But enough. I tend to have these compulsions that I realize are brought upon by my upbringing, in particular when it comes to finances. Reuse, reduce, recycle? I didn't need some environmental advertising campaign - it was the way we lived.

I am thankful for being brought up this way. Mom and Dad were children of the depression and WW II - they knew what doing without was like. I never heard them complain about it. They knew how to stretch a dollar; to make cube steak (blek) taste good, do home and car repairs yourself, get the extra job when needed. Throughout most of my life there was Sunday dinner at 1 pm, after morning services at the Catholic Church, where most of the family would gather. An aunt and uncle, some great aunts, a few cousins, knew if they wanted to come over, Sunday was when the gang would all be there. No matter what was going on in life, Sunday dinner seemed a constant.

When it came time for college, Mom and Pops sort of stayed on the sidelines, advising me minimally, and trying to get people they knew to help me make my decisions. I knew money was tight, I had no clue what I was doing, my grades and standardized test scores were pretty good. There were a few scholarships, but tuition costs freaked me out. I didn't even try an Ivy League school, but RPI and RIT actually appeared to drool over me. But the sensibility of a state school could not be denied in my mind, and off I went. I had a hard time adjusting to college life. I got a job and worked through college, trying to pay tuition, books, etc. I took out loans. Pops helped out a lot.

When I got my first job at General Motors - I felt like a rich man. Indeed engineers get paid well but not like the more lucrative professions such as a doctor or lawyer. I didn't know that - I was amazed - my starting salary was close to what my father had retired on just a few years prior. I had heard my Mom talk about a French restaurant in Syracuse frequently. I called up Pascale's and set it up, told her to invite the family (including a few aunts) and dinner was on me. I brought the ladies white roses. I felt like such a big shot. Of course, my family still having their blue collar flair, complained about the portion sizes, the sauces, and I forget what else. Afterward, I swore the next time - Ponderosa.

The second order of business was how to repay my folks for all they did for me. There really was no way to do that financially or otherwise. But Dad had never had a new car before. I called my sister, told her of my plans. Like me, my parents had supported her in her college education and she would be soon be graduating herself. Together, we put a nice size down payment on a teal blue Buick LeSabre. It was probably one of my favorite moments in my life - being able to do that for them. My parents first new car ever.

Steve and I are by no means poor. Without my salary, and with the onslaught of uncovered expenses for Zach, things are tight. But we are so fortunate to have options. I thank God that Mom and Dad gave me the sensibility to not live the high life, but within my means. We do live in what I consider a huge house, but it isn't exactly well decorated, in fact it may look a little sparse. In the dining room sits my great Aunt's dining room set, circa 1945. In the kids bedrooms, a dresser and bookshelves from Steve's childhood, in the guest room, my grandmother's dresser and night table. We did splurge on some bedroom furniture 2 years ago, and some living room and office furniture. But everything is piecemeal.

I kinda laugh that we live in a neighborhood that when I was a child that we would take Sunday drives through to see how "those" people lived. Here we were driving in to our lovely neighborhood just 3 years ago with our 13 year old vehicle up and our minivan that is pretty banged up, but safe, so we leave the bangs. There are a million Honday Odyssey's on the road, and I think it is safe to say, ours will never be stolen. I like to say it has been "customized with anti-aesthetic theft deterrents".

I am a fireman’s daughter. I may have faults, and dirty hands, but I have pride. When asked in grade school what our fathers did for a living - someone would say "lawyer", someone else "banker", someone else "engineer" - and then I would say "fireman" and you know I was the coolest kid that day. I mean how can you compete with red trucks, those heavy uniforms and helmets, and, well, fire? I loved telling people about my dad. Firefighters are brave and strong. They are heroes and everyone knows it.

My dad was my hero, too. And not just because he was a fireman. His heart just couldn't have been any bigger. My cousin once described him as a man who made everyone feel like they were his favorite.

He was not perfect. I remember quite vividly: he would spank. And boy did he. And then he would come back with tears in his eyes and a pack of gum explaining that we had to learn right from wrong. He always emphasized compassion, love, service, Jesus. "Love the sinner but not the sin." He was far from a haughty man. They say women marry men like their fathers and I often wondered how that could be true for me. Steve a PhD intellectual type, bald, glasses, sorta geeky, sarcastic. My father was a high school grad, enlisted Air Force vet, tall, brawny, with a beautiful wave to his hair, and not a hint of sarcasm to him. Humility and sincerity. Probably the most unique traits about both of these men. I see it now.

As I grew older, and the fireman thing didn't impress my peers nearly as much as it did years earlier, my teenage ego kicked in and I was likely not the nicest about my dad. The girls that had the cool clothes, fancy vacations, and ski trips in the winter, had fathers that belonged to that abstract group of professions like engineers and lawyers, that no one really knew what they did, but it seemed to be working well for them financially. I was determined to go into a profession that would put me in the ranks of those who had nice stuff and not just nice intentions.

Fore a brief time, I wore the nice clothes, flew on planes that took me to impressive places, ate out at restaurants that served things on fire on purpose, started doing some hip things. It is amazing that living that life never made me happy alone. All those years of Steve and I working yet living way below our means, I never let the impressions of my parents get away from me. I am grateful for their guidance. But it isn't just finances they taught.

My parents love for their children and their grand children was paramount. Today it breaks my heart as I think of how my father would have loved Zach, without care or worry of his autism. How I need him in my life to tell me what not to worry about and what to work for. I am grateful for the bit piece of humility he passed to me. I am grateful to the heart he gave me that masked by my sarcasm, I know is in the right place. I am grateful to the art of compassion he and my mother made priority when dealing with others, and easily passed down to me and my siblings. I am glad he never let me get "too big for my britches" - and when he saw me acting pretentious, was quick to point out that I was certainly not walking with Christ.

I swear I can hear him laugh at the bizarre things that Zach does - not in a mocking sense, but a sheer enjoyment of Zach as an individual. I can see him being a protective papa if he ever saw someone dare tease Zach - that six foot three fireman presence that he judiciously used to intimidate those with not-so-nice intentions. All with that soft soft center wanting to embrace anyone who was hurt or struggling. It tears me up to know that my children will never know him.

Sophia has been watching the movie "Fireman Sam" over and over(perseveration anyone?) again on Netflix these past days. I cannot help but wonder if my dad's spirit is guiding her in her obsession with this movie.

I miss him. I wish my kids could have met him. I am a fireman's daughter.

Happy Birthday Pops.

It's Not All Bad: Request for Donations

CLICK THE RED HOUSE TO DONATE TO FEAT OF CNY!!! THANKS!!!

If you are still reading this blog, after all the rants, raves, and frankness, then you likely don't hate me or find me totally annoying. There is the odd chance that you do hate me and read because of a delight you take in my struggles, which would likely make you diagnosable in some taxonomy or another of the DSM. I'm kind of banking on the fact that most of my readers are rooting for us and not looking forward to our demise.

I often wonder how many people in my life are trying to help versus who are just doing the base minimum in order to state that they are helping. I am pretty tough on my family. Yup, I know. If you haven't figure out this by now about me, my expectations are, well, a little on the demanding side. I become downright argumentative/judgmental when my requests/demands are not met to my liking. And that happens a lot.

I try to keep in mind that they likely don't mean to hurt me. But I guess that when I tell them they are doing as much, and they refuse to accept any responsibility in their actions of making me feel that way, well, I become disgruntled. But there are several occurrences where they brought me joy - and I am not sure if I ever relayed that.

Now as much as I complain about my kinfolk, I do love them. And they aren't all out evil. In fact, sometimes they can be quite charming and even amaze me with their kindness. Recently, Zach's godparents began watching Sophia and Zach on Saturday mornings so that Steve and I could participate in training runs.

Steve and I will be running in the 33rd Annual Syracuse Mountain Goat 10 mile Run on May 1st. We have been training for the run and are running it in dedication to those affected by autism. We are asking those who want to support us to make a donation to Families for Effective Autism Treatment a local non-profit group that provides resources and support for many families affected by autism. Please consider donating to this terrific organization - they accept credit card donations - and let them know it is for the Mountain Goat run.

Anyh0w - the training runs have been on Saturday mornings at 8 am downtown in Syracuse. That meant having a sitter at our house at 7:30 am in the morning on their day off from work. And Cathy and Mark, without my asking, volunteered their time to us. It has meant the world to me and has made a difference in my disposition, because this is exactly the type of support we need. 1) I was able to get time with my husband doing an activity we both enjoy. 2) I was doing something healthy for myself. 3) I was getting out of the house that I feel so chained to otherwise, and 4) I was getting a break from the kids!!!


Aunt Cathy and Uncle Mark also had us over for dinner during Passover. It was so pleasant.

As for the rest of life: Zach's base paraprofessional (therapist) has left and we are once again scrambling. I have found partial replacements but there always seems to be issues of one sort or another. I have yet to receive the old data from a previous teacher which may create a problem if we don't get it soon because in order to qualify Zach for summer services, we need to show regression of skills from periods when Zach did not receive therapy (vacations, breaks, etc.) . If we don't have the data that may pose a problem. We attempted neurofeedback with Zach last week. The session was a struggle, and I noticed absoultely no changes in Zach, so we may revisit, but for now, I think we will be passing. Zach starts play therapy this week a to the tune of $60 a shot. Yikes! He would have been working with this therapist for free had I not been dimwitted enough to pull him from his preschool program. *sigh*

Sophie's test results are in from school. She is fantastically average according to the tests. According to observers in her classroom, she has some issues. So what does it mean if you test well, but in the academic environment, you have struggles? We'll find out - Sophie's meeting with the school district special education department (CSE) is May 10th. The fun just never seems to end!

So please do consider making a donation to the great organization I cited above - any amount is appreciated! They have done a lot for our family and others. How many times can you give money to a charity and absolutely know it is being used wisely? I can assure you, this is one of those times.

And as for Tuesday April 19th... Camelot

17 children. I think. I don't know. And there were many of them on the spectrum. How many? I don't know. All I do know is there were a crowd of people at my house. There was confusion. There was pizza sauce on my walls and good couch. There was happiness. There was even a striptease. And I loved it.

It brought me back to Sunday dinners at my mother's house. It thought back to the holidays of total chaos that I adored. I am the youngest of 4. My siblings all basically had children at approximately the same time - my one sister through foster parenting and eventual adoption of my beautiful niece. I was a kid during this time.

But I loved the fact that amongst the chaos, one Christmas the torn wrapping paper in my mother's living room must have measured 2 feet high and one of the kids was walking around with a bottle of scotch meant for someone else. There was laughter. There was such joy.

Family gatherings haven't been quite the same for us. We have the only young children in the family right now. And then, Zach doesn't quite put on the show like expected. I feel that we let others down; they go out and get these presents that we have to entice Zach to open. He doesn't show the reaction and gratitude of his sister. It took us so long to get him to understand to take the paper off. Now, he just rips with abandon,sees the surprise and tries to figure out what it is and what function it serves.

But then there was this past Christmas 2010. He finally showed interest in opening up his own presents. I cannot tell you how stinking excited I was. It's one of those things you just take for granted if you don't have a special needs child. And then it happened. I was pulled into a bathroom - pulled away from watching one of my son's precious moments. I was told a story of abuse and pain. My son's moment continued, and I wasn't there to watch. Cousins and aunts and uncles were there, but they didn't understand the significance. I only have so many of these moments, and someone selfishly took that away from me. Yes, this person was in pain. No, I didn't cause it. Why did they have to choose that moment to tell me? Why couldn't I just have that one freaking moment of joy in my life. All our joys are so hard fought for. Why does everyone continue to expect me to solve their problems? Can they not see we have ones of our own, ones that I cannot handle?

That's family and autism. You can watch me as much as you want. You can even say you love me. You can watch Zach. You can read my words. But, my heart is only understood by a few others out there. This is a case where blood being thicker than water does not apply.

It's so hard when I see a newly diagnosed parent going through this. It breaks my heart, it hits so close. It makes me relive that place all over again. I had some friends over the house today with kids the same age as mine, but neurotypical. They are so flippant about things involving their kids and what we are up against. I realize there is just no way to describe the heart of a mother when faced with things like which preschool to choose for your nonverbal child. You just have to live through it to understand the pain, the torment, the guilt, the fear. It's so freaking unfair. I feel so connected to all my fellow ASD mothers that barely know me because no one else will ever understand, it just isn't possible. Just us. Connected by that weight on your chest that never seems to go away, that nightmare that you never wake up from but get used to facing.

Part of that nightmare is that of the ever-disappearing family. (I stole that from a facebook friend.) I was always so proud of my family. I knew we weren't the Waltons, but I really felt like I was dealt the best hand possible. I had two parents who loved each other, siblings with nice spouses and beautiful children. We got together at holidays, on Sunday's at my moms, for birthdays, and sometimes just to get together. I always felt like if I really needed them they would be there for me. The fact is, I was fiercely independent and really didn't need them much for many years.

And then there was diagnosis. These past few years my life has felt like a round of musical chairs, where I thought I had the last one, and it was pulled out right from underneath me. The thing I always valued so much in my life felt like it was an illusion. I could see them, hear them but when I went to reach out to touch them, I reached right through them. I cannot ever begin to tell anyone how hurt I have been over this. And I am sure my family would tell you how much I suck if you were to ask them, and they would probably be right. I do suck. In so many ways I cannot begin to count. In so many ways I never knew, until I had this little life that depended on me for so much and I began to fail him.

So where are they for him? Hate me, turn your back on me, but my kid? I just will never understand that. Why won't they spend time with him? Visit him? What about Sophie?

Let me say that Zach's grandmas are top notch. If there were ever two women who loved their grandson - it is them. And for that I am so happy. But those days of family get-togethers, with laughing and games and sharing, yeah, my kids won't be having much of that with my family. They can say it is because they don't have kids my own age, and that is probably right. But I was a single teenager, twenty something year old, without any children, and I made a point to spend time with all their children.

There were movies, museum visits, camping trips, the zoo and endless sleepovers. I don't think they remember. I think it must not have meant to them what it meant to me. I love my nieces and nephews almost as fiercely as my own kids. I miss them. No one wants to visit hysteric Aunt Leanne. I guess I probably wouldn't want to either. But my mother and father didn't raise me that way. You visited whether you liked it or not. Family was family and we supported one another. I think about the hospital visits, or the nursing home visits, cleaning at great Aunt's house who could no longer do it herself, the endless birthday parties, car rides that took forever to the south to visit people I felt I didn't even know but I was told were my family. Kiss them, hug them. This is your blood.

I am not angry with my family. Anymore that is. Maybe that is part of this acceptance thing I keep on hearing about. But the facts still remain the facts. And my wants and desires still remain too.

So I had a surrogate family over. With their own weird kids like mine. Ones that wanted to be around me and my kids. They appreciated my offerings, tolerated my personality, asked me how I was doing and what they could do to help. Little did they realize that by trashing my house and then helping to clean it up, they gave me just the medicine I needed; the gift of their time, the gift of their presence. For one brief moment, I wasn't alone in our journey. Camelot?

Today's Snowflake: Cody

The Snowflake Project

Child's First Name CODY

Child's Age 9

Diagnosis Autism, ADHD, ODD, Anxiety Disorder, and Sensory Processing Disorder

Age of Diagnosis Autism – 3 years old, Sensory Processing Disorder – 4 years old, Anxiety Disorder – 5 years old, ADHD – 6 years old, and Oppositional Defiance Disorder – 7.5 years old

Family Description Momma Bear, Papa Bear, Big Brother Bear (16.5 years old)......and mini dachshund Snicker, baby kitten KitKat, Turtles Onion and Olive, and Nemo 1 & Nemo 2 goldfish

Age Symptoms First Appeared/Noticed Doctor saw signs early as 6 months. At 18 months, he stopped saying new words. Stopped looking at people at age 2. Easily frustrated at ages 2 – present. Noises bothered him since early baby days. Stopped being able to wear “normal” clothes at age 5. Brain started “talking” to him at age 5 ½. Couldn’t eat “normal” food until at least 3 years old (no meat until 6 years old). Would gag on almost everything.

Symptoms of Autism Social awkwardness, don’t like to look into other’s eyes, easily frustrated, lined toys up since a very early age, rocks back and forth when upset or frustrated, memorizes and repeats commercials and/or movie trailers, lack of appropriate humor, lack of ability to “make and keep” friends, bounces up and down when nervous or excited, screams when can’t find the words to say, runs away when feelings become overwhelming, can’t talk about his feelings, plays with fingers and claps hands as stimming, change in routine is TERRIBLE!, needs precise rules and be reminded of the rules frequently, etc.

Child's Grade Level in School 4th grade at Special Education Boces School

Types of Services Child Receives Cody goes to a special education school where he is striving. He receives Occupational Therapy 2X/week, Speech 2X/week, Counseling 2X/week, cognitive behavioral therapy weekly, social skills group

What Treatments Have Been Most Beneficial for Your Child Cody is on medicine. I am not a “medicine cures all” kind of person. I don’t want a medicine to “take away” all my child’s “issues”, as I feel that he needs to learn to “deal” with the world as best as he can. But on the opposite note, I have no problem giving him a low dose of a medicine that can help him control his anger and aggressions. and that can help him control his impulses and be able to sit and relax when he wants to sit and relax. We have finally found the right mix of medicines to allow my Cody to flourish. And the weekly appointments for his cognitive behavioral therapy have done wonders with helping him overcome his phobias and fears of the unknown. My Cody is back!! I sure did miss him!

Co-morbid Conditions ADHD, Oppositional Defiance Disorder, Anxiety Disorder and Sensory Processing Disorder

Please check out Cody's video by clicking this link!

What would you like the world to know about your child?

My Cody is my world. His smile can light up any room. With a little patience and understanding, he can be one of the most sweetest and loveable kids you’ll ever meet. He has a heart of gold and wants so hard to be liked by everyone. He doesn’t always make the “right” choices, but he’s just learning to take the consequences for those choices he makes in life. LOL. He loves to draw (and he is an awesome artist), read (he’s been reading chapter books since he’s been 5 years old), and play with his Nintendo DS. He is totally obsessed with POKEMON and can talk about them all day long if you listened. Of course, he doesn’t understand when someone doesn’t want to “listen” anymore about his Pokemon stories, so he keeps on going and going and going. He is a good boy. He is on a few medicines right now that have made an incredible change in his behavior. He is starting to talk more about other stuff than just that of what interests him. He is more “calm” and is such a better friend. He is working so hard on not running when he’s upset, but rather to use his words instead. He is such a quick learner. He loves school and loves to be loved and wanted. HE IS LOVED AND WANTED MORE THAN HE COULD EVER KNOW!!!

The Snowflake Project

It's April 11 and we are expecting temperatures in the mid 70s. But when you live in Syracuse NY, you just never know when that snow might hit again. Indeed, last year on Mother's Day, we had a dusting. Although the snow might not fly again outside for a few months, there's some other snowflakes I would like to concentrate on.

In order to try and get Zach's needs met, I have taken on the best approximation I can muster of what the world looks like from Zach's perspective. In this process, I have focused on his symptoms of his autism and attempted to determine what may be the cause of these symptoms other than just letting this mystery blanket term "autism"be the answer. Through this lens I have built, I realize that I sometimes forget that this is Zach's version of autism, and no one else's. I am now cognizant enough to realize that I need to take my filter off and be open to all the possibilities when talking with someone whose child also has autism, as they, too, have their own version.

Much like myself, I have found that a lot of people tend to define autism by the one individual they may come into contact with that has it. From my realization that this just aint so, I have to chuckle at the very true tone of one of my favorite quotes : "You KNOW one person with autism, you know ONE person with autism."

I am attempting to create a series of profiles of children that describe how unique each child is. I have begun to ask parents to provide me with brief narratives describing their children in the form of a template. I am hoping this brings some awareness that each child is as unique as the snowflakes that fall from the sky, and should be approached as such. I am also hoping that this allows some parents the chance to express what they want others to know about their child than can't be done in a fleeting conversation or quick glance.

I will post these profiles - perhaps at rate of once a month depending on how many I receive.

If you would like to participate, please download and fill out the document located at this link and make sure to add in your city/state to your response.