On Being a Mom

I, like many other women with children in this world, spend a majority of my time attempting to make order out of chaos. I organize spices, fold towels, stack laundry, sort and colorize closets, review homework assignments, verify and pay bills, (talk about chaos, try understanding your phone bill sometimes....). It all can leave your head spinning.

In the typical world, you regroup from time to time, look around the house, dust bunnies still in the corners, and you notice that as unordered and imperfect as life may be, things are going in the right direction, the children are healthy and are making strides toward those goals you know they will achieve one day; high school graduation, a job, maybe marriage and children of their own; the whole cycle set to repeat.

Add a disability and this chaos goes beyond this model for there is one thought that I revisit over and over again: "what is going to happen when I am gone". It is the clincher in all this.

I will be taking a workshop on special needs trusts. Sounds like a good time, right? I am hoping it will give me some peace of mind in what I need to do to make sure that Zach will be taken care of after we are gone.

Steve and I have not updated our wills. We need to. I guess I have not wanted to consider the more than difficult decisions that we need to make regarding Zach's care when we leave. Who will take him? Who will want to? Who will be able to handle this and not resent us? Not quite the straight line approximation that most others have to deal with.

Now I am completely in love with my son, and cannot imagine anyone not thinking he is anything but the fantastic kid he is. However, when I am cleaning up poop from the side of the toilet because Zach has gotten confused once again about: standing is for peeing, and we need to sit to poop, well, these are the moments that make my hands go clammy, and not from the fact that I am cleaning up fecal matter. I view, as I do for all those in my life that I love, a privilege to be able to take care of things for those who need help. Blood, bedpans, feeding tubes, sponge baths, from babies to those near death, I have done it all.

But I know that most people do not share my "no big deal" attitude and understanding at taking care of business. It's not pleasant for me either. But it is what needs to be done and I can get through it without much stress. I often wonder if I should have been a nurse? It's funny because I realized that this is one of the gifts in life I have been given. Some people get abilities that land them Nobel or Pullitzer prizes. Me? Yeah, I get personal sanitation service insensitivity. Hurray. :)

Most moms are pretty good with this stuff. There was a time when dads weren't expected to change diapers. I guess most moms don't have to worry about this past the age of 4 though. I have come across parents who have to deal with this when the child is 14. Not the same as an 18 month old, I assure you. These people are amazing. I won't lie - I am really hoping I am not going to be in that group.

I love my kids. I worry about them. I try to take care of them. And I feel like a complete failure just about everyday with Zach. I am so grateful that he smiles and hugs me so often. He is such a forgiving soul. In the words of a friend: " He is so stinkin' cute." and he is. I never want that smile to go away.

So in trying to upturn every stone and make sure I am doing all that can be done, I am planning on making a secure future for him with a special needs trust. The problem is that it's a double edged sword; I feel like I am giving up on him by doing this preparation. Am I not keeping my expectations high enough that he will one day be able to take care of himself? Because of my bad attitude, am I going to create a situation where he will not flourish and become everything he could be?

There's another double edged sword: do I work him so that he can become all he can be? Have tons of services and therapy? Will this cause him not to learn on his own? Or worse: Will he think I don't love him as he is? Will that to cause him to lose that smile?

There is no certain path. There is so much potential for damage. There is no road less taken. There is only the circuitous path you forge yourself through a densely grown field of tall grass where you cannot see your feet. There are pot holes, and hills, stones, and snakes. And I cannot afford the good hiking boots. But I will carry him on my back, nonetheless, so he doesn't have to deal as much directly with the unknown that lay beneath.

It is just so much more complicated with special needs. I don't fear death. I don't even fear pain. I fear what will happen to my boy. If I could, I would protect him from all harm and sadness for his entire life. I would teach him all he needs to know. I would feed him, clothe him, shelter him, for his lifetime. I would make sure that smile never fades. I have a feeling that his innocence will never leave him, even if he were to become totally self sufficient. That is why his smile is so special, it is because he is unaware of the pain in the world, and the fact that there will are those in the world who wish to afflict him with it.

Yeah - this is not the motherhood I signed up for. But it is where we are. There is no amount of organization or preparation for this life. It's just one step at a time, some of them smaller than others, and hopefully, more of them forward than backwards.

The Hill Set Before Us

It happened. This week. One thing after the next. Brutal.

Things had been going fine. Then the news started to roll in.
"I think I am allergic to something in your house. I am going to have to leave the team."
"I am having issues on my other job and will be leaving the area."
"I have taken a new position with another company."
"I have been asked to take a teaching position and have accepted."

And just like that, Zach's team has vanished. Well, not totally, not yet, but 4 of the 5 members are planning on leaving if they haven't already left yet. And 2 others had already left prior. (One on medical leave)

Only one word comes to mind right now: lost. A few more perhaps. Abandoned. Alone. Afraid.

On top of our abandoned ship this week, a friend and coworker of Steve's passed this week from cancer. He left two school aged children and a wife. Solemn. Grief. I decided not to tell Steve what was going on for a few days since he was already burdened.

In consolation to this news, some people have told me I am strong, resourceful, smart. I suppose I could be. I had given up thinking I was ever going to amount to much, after feeling so many have tried to make me feel like I am nothing in spite of the gifts I have been given. I have always wished to be something more in my life, and I sort of gave up on that. However, when I had children I swore no matter what it takes, I was going to do right by my children; I will make a difference in their lives if I cannot make one for anyone else. If I happen to help a few other people along the way, then I have lived my life according to my conscience and what truly brings me joy.

So somehow I have to drum up the courage to call, email, and whatever form of contact I have in my power those who might be able to help. I am trying to work with him myself.

Zach is doing OK - eye contact is greatly diminished, his verbal utterances are down too, he has a new stim - he is sort of waving his one hand while fanning his fingers, and nighttime has been tough with bedtime and some night wakings. But - he has managed to poop on the potty several times within the last few weeks - some of it even self initiated. I will take it, and use the positive energy I derive from it to do what it takes to get him the services he needs.

Sophia has strep again. Spent the day playing Chutes and Ladders, and CandyLand. Was supposed to go out with a bunch of fellow mothers and drink red wine and let loose. Didn't happen. Stayed home and filled out reimbursement checks to our insurance company instead.

I feel bad because the advocacy work I am doing always takes a hit when things like this happen. We have a fundraiser planned for next weekend, I have been working with a few families to help them with services, one family freshly diagnosed in December, and Steve and I have been working on a presentation for using the iPad with children with autism for a local agency.

Steve made it into the Who's Who of Americans - I found out this week - of course, he wasn't going to tell anyone because that is who he is. So proud of him. I'll tell everyone instead.

And that is life here in Camillus. Looking up a snowy hill to climb.

Further Comments on Grief

For anyone who has lost anyone significant to them, they know the stages of grief and how they went through them. I ponder whether there are those who think I am likely melodramatic when I discuss that Zach's autism had us go through this process. All I can say is that we certainly did, and it was very real and intense. Having lost people I love, I know that Zach's diagnosis was as intense as those experiences, perhaps not the same as actually losing a child, but painful to a level of pain I had not experienced before.

The problem with this acceptance/grief/autism thing is this: what is too much to hope for? when do you give up trying? You see, unlike death, there is no finality to this, it is endless waves; there is no closure.

Interacting with people these past few years I have come to be aware of the fact that there is another way to classify people: there is gender, race, nationality, religion - but the one I realized that I am more aware of currently is those who have experienced grief and those who have not. When someone doesn't connect with me I realize they have likely experienced little in the way of grief in their life, it has nothing to do with if they have a child on the spectrum or not.

A friend who lost a child was listening to the radio when he heard about a fiction book about a teenager with autism, Unlocked. He sent me a note in facebook about the book. It was a simple gesture from someone who probably realizes more than anyone that reaching out to people can mean a lot when you are in grief; reaching out in genuine and sincere way, not a generic "let me know what I can do to help" that is vague and rarely acted upon. These types of gestures are not genuine and I have offered them in my life, although I have learned to no longer do this.

Fact (at least for me): You can enjoy life, love and appreciate your children, have friends, a nice home and still be struggling in life, especially because of disability and all it ensues. Grief ebbs and weaves. The engineer in me thinks of a sine curve with various forcing functions and filters attenuating the depths and heights of each "wave", all of it varying over time; some of it with time as its only dependent variable. Regarding autism, I have found that grief isn't a one time thing. It comes in waves.

I don't see any end in sight for these struggles. You see, just when you start seeing progression and you begin to get hopeful, something will smack you with reality, say seeing an NT child where you get to reference what normal development should be. Or perhaps there is progress in one area and regression in another. Regression - the terribly nasty word feared by so many of us parents with children on the spectrum, and with good reason. Imagine having a child develop symptoms at age 4 - they were developing typically and boom - eye contact or language is gone.

And then there is behavior - when a child develops new skills, sometimes there is new behavior because they lack the emotional maturity to handle the new skill and you realize you have the competency of a 4 year old with the maturity of a 2 year old. uugghhh For typical children, these things usually coincide to some degree.

When you are met with the reality of the disability, whether it be through the limitations of understanding in the throes of accomplishments, or the realization that this is not a temporary thing, or the cruel ways of some people in this world, a wave a grief will come and slap you down.

I recall when I first realized Zach had autism - prior to diagnosis mind you. I woke up the next morning thinking I was just having a nightmare. Then it hit me, it wasn't a nightmare, it was my life; something was "wrong" with my boy. I know that it is fairly common though after reading and discussing with other parents. I don't experience that anymore. But I do get these moments, you see I live in the land of hope - I feel that he will be conversational one day, that he will do OK in school, that he will have friends, that we will laugh together as we share our lives. then something happens and I think that this might never be, that I am deluding myself, and it cuts like a knife. Grief strikes again.

I have never been one to be described as much more than a skeptic. But I know I would never forgive myself, nor could I be happy in this life, if I did not continue on to try reach him, to try things that have no guarantees. So I have to run contrary to my own self. You see if there is one thing I do know, if you want to touch the sky, you have to reach for the stars.

Quiet on the blog, certainly not at home

Please do not interpret my silence to mean that things are not going well with Zach. Indeed there are a lot of joys in our house at this time. Depression is sucking the life out of the author right now, and her husband is trying to pick up the slack as best he can with the enormous pressures he already has on him. This has been our routine for several years now, I most likely suffer from SAD. At this point, I am at least somewhat functional, able to meet the minimum obligations of the day. I have tried many therapies/Rx and they help, but having a bit more stress than usual, it still undermines the best interventions. But there is no time to concentrate on my woes right now. With the pressures we have, I know my limitations, and I do get some energy and motivation from knowing how much my kids count on me. I look forward to those days when the sun will peak out a little more regularly, and my energy level will be regained, and maybe a few more brain cells will function too.

First in good news: Zach has begun to ride a bike with training wheels which is awesome to watch. All the hard work and $ of our basement was worth every penny when we got to see him accomplish learning to ride the bike and within a few days, showing great pleasure in doing so. He will even tolerate the helmet because the desire to ride his bike is so high.

As said before, the basement is nearing completion - there is mostly trim work (casements/mouldings) to be completed. I will take some pictures at some point for everyone to see. On top of the riding the bike, Zach and Sophie have procured some nifty roller skates and are attempting to learn. Sophie struggles with this - and of course I am of little help trying to teach her how to do it. Right now, we have made a commitment to 5 laps around the basement a day, hoping that it eventually clicks within her own mind. As for Zach - his training roller skates are fun and he does really well with them.

I recently had the opportunity to attend a presentation on ABA and it was most useful. The presenter was animated and reviewed a lot of information I knew - however, he allowed for questions and this is where it paid off. During one presentation, I asked a few questions with Zach in mind, and lo and behold realized that Steve and I had been inadvertently sabotaging part of Zach's program.

The old me would have dwelt on this forever, saying how stupid I was to not have realized, but the most recent version of me (Leanne v4.11) took the information and immediately acted upon it. I changed the way we respond to Zach and it worked. He is being a lot more independent in using language now - at least for what they call "manding" which is verbal behavior's way of saying "requesting".

There has been even a little more flow to his utterances - what appears to be a little more back and forth sequencing in language. Again - he is still so far behind that it is hard to tell. However, Zach has his own way of learning, and rather than be frightened of his looming delay, I have more confidence that one day it will be there, with persistence we can help that brain of his to formalize and mature these skills. To see Zach and work with him without any knowledge of what he is like, you would think that he is likely incapable, and a slow learner. For certain, when you first approach Zach with trying to learn a new skill, sometimes it can be nothing short of painful. And then comes that magical day, and voila, it clicks, and his slow progression turns to near mastery. It's crazy how this happens. It's like once he does something correctly once, no matter how long it takes him to get there, he just gets it from there on in. Of course, he needs to understand its place - why he is doing it and what it will do for him. Motivation is tricky for kids with ASD.

That brings us to big new #2. Dear little Zach is definitely reading. He has around 12 sight words down right now. (At least this is what we have tested so far.) This he did mostly on his own of course. The odd thing is, he doesn't necessarily know what he is reading. So - Zach can sort and match his colors. But if I ask him to touch blue an present him with a blue swatch and a red swatch - he will guess. Zach is having difficulty associating the word with the color. Yet, if put the words "red", "green", and "blue" down in front of him, and ask him to touch blue, he will touch blue. I believe he also knows one, two, three. We are in the process of targeting how to get him to match the color blue to the word blue. Totally reverse of an NT kid of course, and from what the other moms tell me, not so different than other kids on the spectrum. This stuff blows my mind.

There is so much work to this program. I cannot even begin to tell you how overwhelmed with trying to keep up with all this I am. There is so much to do, and I feel like I am walking through mud trying to accomplish it. Stinking Syracuse winter.