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....