I never knew that exhaustion and inebriation looked so much alike. But after reading my last post, I can confirm that indeed they do.
A death in the family is always a hard thing. When it is for a family that is out of town, it adds that degree of difficulty. When that family has been plagued with misfortune, the sadness is just that much more. Some deaths, while still sad, are not as much tragic as they are just filled with loss. Grandma S. dying at 97, sad. Grandma M. dying at 78, sad. Being killed by a drunken driver, tragic. A child's death, tragic. Death by a broken heart, also tragic. I feel that our family's death this week, although upon autopsy would reveal a specific condition, was fueled entirely by a broken heart. Not the type of broken heart in romance novels, mind you, but the type that comes from the inability to make sense of someone else that you love's own tragedy.
Probably best that we had the iPad presentation - it would be too easy to dwell in the unpleasantness of this situation for too long. The presentation snapped us back into the land of the living. Although totally unrelated, this instance may have even inspired me more to stay steady the course in our work to reach out to others who I believe are in need.
Indeed I know I did that. A father approached us at the end of the presentation. He told us of his multiply disabled 24 year old daughter. He was a tall professional looking man. He was pleasant, but there was this sadness in his eyes I cannot describe. He spoke briefly of the difficulties with raising their daughter, who at age 24, has yet to communicate a sentiment to them. I knew our iPad presentation was probably unable to offer him a way to meet their needs. I so wanted to be able to give him some answer, some recommendation. The best I could muster up was to encourage him to stay hopeful. He thanked us for our time, knowing how difficult it is when you have a special needs child yourself to take time to share. After 24 years this man is still attending sessions - looking for something that can help give them the connection they likely so long for.
I came home to our babysitter with a smile on her face, excited to share with us that Zach had successfully #2'ed on the potty totally self initiated during her stay. Sophie was already in bed. She told the sitter she was "exhausted", got dressed, washed up, and put herself to bed. She can be so mature!!! I went up stairs and kissed her goodnight. I came back downstairs. Zach took me by the hand and said "Momma come". I followed him up the stairs. He b-lined into my bedroom. I decided to not fight him, and dressed for bed. I got into bed with him, and lay my head on my pillow. He scooched himself over and lay his head on the same pillow staring into my eyes, and then smiled. Connection. Lots of them. Not the kind that others may require - no calling me "Mommy" no saying "I love you" hell no even saying "good night". I don't take that for granted, that ability to connect. I know plenty of people who can say everything they want, can express their feelings freely, and frequently do, usually in the form of disappointment or anger, but they haven't managed to connect with others. How blessed I am to have the ability to read my son and him me. Connection.
Sunday, March 27, 2011
Thursday, March 24, 2011
I kinda like who I am
Phew - it's over. The first presentation for the iPad is now done. Betcha Uncle Ron doesn't realize what a beast he created when he bought that iPad for Zach almost a year ago. We presented to around 60 people tonight sponsored by two terrific agencies in the area on the benefits of the iPad for people with ASD. It was even opening night for our new website/blog that, although still a work in progress, is informative and looks great because of the skill and caring of a talented young man.
I am a terrible public speaker which may surprise some of you who know me or have spoken to me. One of the reasons I didn't pursue a music career is that you mention the word competition or recital around me and the dry heaves set in within seconds. And let me tell you, there were plenty of them growing up, so it wasn't because I didn't have the opportunity. One of the things I used to like was accompanying on the piano. The chorus was nice - but I really loved playing with the orchestra - just no concertos please. A few bars to myself was fine, but I was more than pleased to do harmony and background support. All in all, what I really wanted was to be the conductor. Still do.
I am not sure if it is the age or the events of my life or a combination of both, but I am in this place where I can do things I never thought I could before. I know I have public speaking issues, I know I am not the world's most imaginative presenter, but I know tonight's presentation was good in that I reached a few people, I shared, and I may have done something to help someone. I know that although I might not have been the most titillating, the content of the presentation was top notch. Perfect, nope. Exciting, likely not. I can work on that - or more importantly, find people to help me with that. A friend almost has me convinced to do Toast Masters....
I love what I am doing right now. I haven't seen Steve so energized in a very long time, either. When you are in the right place, doing what you are supposed to be doing, that is what happens. It's still a lot of hard work, but it doesn't totally drain you.
I like that I recognize my flaws, but don't beat myself up over them. I love that I have learned how to ask for help and more importantly that I have managed to find some terrific people who care and want to help. This place where I am at - well, I found that I am much more accepting of people (with their flaws and all!) than I ever was before. And there are tons of benefits to that.
I still do/say stupid things. And I am blessed with people in my life who love me anyhow. I try to make sure to put in more than I take out. I think I have accomplished that.
I also realize that I may be too involved in my son's life. We have spent quite a bit of time lately together - and he is really getting that potty training thing pretty well. Every day he refines it just a little more - he totally self initiates his toileting.
What was most impressive to me was his ride around the block on his bike with training wheels. The kid ate it up! Overall, Zach is doing fair right now, although I am not thrilled with his progress by any means.
Our program is still in a state of turmoil - and there is very little guidance with getting appropriate staff members.
Between taking training, doing training, and working on Zach's program - there has not been a lot of time to sit down and hit the keys for another entry into the blog - and I lost a bit of my own personal therapy.
He still has that smile though. And his general health is good. But that speech... uugghh.. that speech is still so limited. I think after being hit hard with his unfavorable eval from Yale where they flat out told us that he should be doing more than he is, I really was down, I took it personally - as if I, and I alone, were solely responsible for the lack of progress.
Talk about too much self-importance! It's taken years, and I am far from who I would like to be, but I can honestly say that I like who I am right now. I still have all those pesky faults.
And so does Zach. But he's got dimples. You can always get away with so much more with dimples!
We lost Aunt Ronnie this week. Lots of training including our own presentation this week. I am pretty much exhausted. Sorry about the negligence of the blog.
Looking forward to better weather.
I am a terrible public speaker which may surprise some of you who know me or have spoken to me. One of the reasons I didn't pursue a music career is that you mention the word competition or recital around me and the dry heaves set in within seconds. And let me tell you, there were plenty of them growing up, so it wasn't because I didn't have the opportunity. One of the things I used to like was accompanying on the piano. The chorus was nice - but I really loved playing with the orchestra - just no concertos please. A few bars to myself was fine, but I was more than pleased to do harmony and background support. All in all, what I really wanted was to be the conductor. Still do.
I am not sure if it is the age or the events of my life or a combination of both, but I am in this place where I can do things I never thought I could before. I know I have public speaking issues, I know I am not the world's most imaginative presenter, but I know tonight's presentation was good in that I reached a few people, I shared, and I may have done something to help someone. I know that although I might not have been the most titillating, the content of the presentation was top notch. Perfect, nope. Exciting, likely not. I can work on that - or more importantly, find people to help me with that. A friend almost has me convinced to do Toast Masters....
I love what I am doing right now. I haven't seen Steve so energized in a very long time, either. When you are in the right place, doing what you are supposed to be doing, that is what happens. It's still a lot of hard work, but it doesn't totally drain you.
I like that I recognize my flaws, but don't beat myself up over them. I love that I have learned how to ask for help and more importantly that I have managed to find some terrific people who care and want to help. This place where I am at - well, I found that I am much more accepting of people (with their flaws and all!) than I ever was before. And there are tons of benefits to that.
I still do/say stupid things. And I am blessed with people in my life who love me anyhow. I try to make sure to put in more than I take out. I think I have accomplished that.
I also realize that I may be too involved in my son's life. We have spent quite a bit of time lately together - and he is really getting that potty training thing pretty well. Every day he refines it just a little more - he totally self initiates his toileting.
What was most impressive to me was his ride around the block on his bike with training wheels. The kid ate it up! Overall, Zach is doing fair right now, although I am not thrilled with his progress by any means.
Our program is still in a state of turmoil - and there is very little guidance with getting appropriate staff members.
Between taking training, doing training, and working on Zach's program - there has not been a lot of time to sit down and hit the keys for another entry into the blog - and I lost a bit of my own personal therapy.
He still has that smile though. And his general health is good. But that speech... uugghh.. that speech is still so limited. I think after being hit hard with his unfavorable eval from Yale where they flat out told us that he should be doing more than he is, I really was down, I took it personally - as if I, and I alone, were solely responsible for the lack of progress.
Talk about too much self-importance! It's taken years, and I am far from who I would like to be, but I can honestly say that I like who I am right now. I still have all those pesky faults.
And so does Zach. But he's got dimples. You can always get away with so much more with dimples!
We lost Aunt Ronnie this week. Lots of training including our own presentation this week. I am pretty much exhausted. Sorry about the negligence of the blog.
Looking forward to better weather.
Wednesday, March 16, 2011
Yup
Within a 10 minute span: 1) He spelled the word funny on his iPad. 2) I found him with a serrated knife in his mouth. 3) He said to me "Want bless you", paused and then said "Achooooooo!", I said "God Bless You" and he laughed . 4) He managed to break the Tiffany lamp in my front hall. Wow.
Love him. Life is crazy.
Friday, February 25, 2011
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.
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.
Thursday, February 17, 2011
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.
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.
Saturday, February 12, 2011
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.
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.
Monday, February 7, 2011
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.
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.
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