I got a call from my grandma to come see her yesterday. She has been battling stage 3B Cervical Cancer with clear cell sarcoma for a several months. These last couple of months she has been more in the hospital than out. The chemo and radiation has really taken its toll on her.
It all started towards the end of the last school year. She was living with us and had started getting sick, nothing specific, just not feeling well. She stayed in bed more, her arthritis ached, was sleeping a lot. I didn’t know she had been bleeding, until one day she told me that she needed to go to the hospital. This was memorial day weekend. All summer we waited for the paper work to be ready for the treatment to start, why it took so long we didn’t know at the time, and is honestly a story for another day. This post isn’t about that.
She moved out of our house early in the summer because she worried the effect she would have on my boys constantly seeing her sick and because the chaos that is our life was too much for her to handle now. She finally started chemo & radiation the second week of this school year. Its hasn’t been pretty,but I kept thinking that it would be over soon and life would go back to normal. And it will, but it will have to be a new normal, because things won’t be going back to the way they were before. She has been in and out of the hospital, on and off oxygen, fighting nausea and diarrhea, nose bleeds, incontinence . For her its been demoralizing and depressing, as I am sure that it would be for anyone going through this. But the thing is that I thought, we all did at one point, that this was a terrible price to pay, but it was temporary. The was a finite end in sight. I knew that there were risks, and chance of course, but I believed that her cancer was curable. I misunderstood. It was treatable, not curable, big difference.
So not knowing all of this yet, she called me up today and said she needed to talk to me. When I went over, she basically told me she was tired of being sick, nausea and all the other things that go along with treatment. She never wanted to see the inside of a hospital again. She has surrendered, I don’t want to say given up, or stopped fighting. She has fought, and she hasn’t given in, she has just put it in Gods hands now. She has lived her life trying to follow her understanding of his word. Now she is ready to let what ever happens happens. It’s about quality of life, not the quantity that she has left.
I wasn’t in total shock, but neither was I quite prepared. I didn’t understand a lot before today. I didn’t understand that as soon as treatment stopped the cancer would spread aggressively, or that it was inoperable because of the clear cell couldn’t be exposed to air. We caught it too late, from the beginning of our journey, it was only going to be a matter of time.
Right now my heart is breaking, my thoughts are racing and I don’t know what to do. All of our family is in agreement that we will respect her wishes, even if we don’t like or agree with them. We are struggling with how and when to tell the boys, and how to prepare for a future that won’t include her. I know in some ways we are fortunate to at least have this time to prepare mentally, but it’s still really hard. The women in my family have a long history of being healthy and living to an old old age. Heck my great grandma (her mother) is still relatively healthy and active at 95+ years if age. I had always pictured her standing at my kids graduations and weddings someday. It never really sunk in that she might not be there for that. I am still having a hard time wrapping my mind around it.
Two things I hope for before her time comes, and right now we don’t even have a time table to grasp what that might be, one, I want to have a big family picture made of my family, my sister’s family, my father & step-mom Mamaw and maybe even my cousin & her son if we can. Two, I want to have a big family Thanksgiving feast together. I want to build these last few memories of her here, loved, with us. Something I can hold onto and my boys can hold on to after she gone.
John is taking the day off work, and we will all meet with the hospice nurses and see where we go from here.
I couldn’t let this day pass without noting it here. People often talk about where they want to be a year, two years, ten years down the road. Ten years ago today I was looking at my life, thinking just that, except I didn’t like what I saw. I decided I had to make a change. That to this day was the single most difficult and painful decision of my life. But it was the right one, of that I have no doubt. When I looked at my life and thought about where I wanted to be ten years down the road, I didn’t quite envision where I am today, but I have done and experienced much more than I imagined. I guess timing and meeting the right person really is everything. Casey, I hope you have forgiven me for hurting you. I hope you have found out who you are and met someone who can love you as you deserve to be loved. As for me I have everything I could ever want, a man who understands me and loves me anyways, and the best sons in the world. John, Aidan & Rowan; you guys are my world. I love ya’ll so much. It’s hard to believe that I didn’t have any of you all 10 years ago.
Jan 21 2008 – It was a Bach support group night tonight. Aidan still maintains that it is his favorite place to go, despite the fact he never received therapy there, only Rowan. Maybe that is why, a slight bit of jealousy? Not overly but nonetheless its there. It was mainly an open discuss night. I wasn’t feeling to extroverted or forceful tonight so I didn’t say too much. It’s funny how I can be extremely extroverted some time but not others. We had a list of questions we were working off, but we didn’t get very far down them. I though it would be a good starting point for a blog entry.
1 -When did you realize something was wrong?
Maybe I am getting to hung up on semantics but I still don’t think something it “wrong”, different yes, wrong yes. But to answer the question and be really honest with myself, I didn’t realize it till it was point blank pointed out to me by my sister-in-law’s mother-in-law (who is a special needs teacher) right before he turned 2. It took a while to sink in and actually get services started. In hindsight I see where I should have seen it coming, but I guess I really didn’t. First of all no parent wants to look for something to be wrong with their child, second of all, when you have 2 children you worry about comparing them. So I was so busy telling myself that kids are different and are suppose to be different that I forgot that different is not always good, sometime its warning signs.
2 – What was your reaction when your child was finally diagnosed?
Well that’s easy to answer because we just finally got that. A little bit of relief to finally have it in writing, but mostly residual frustration and confusion. Where do we go from here, there is not road map and no expert but us to show the way.
3- What resources did you find most helpful? Least helpful?
There has been a lot of websites, blogs and forums that have been helpful on many levels, but there is also a lot of negativity and misinformation, bias opinion touted as fact out there to be wary of as vulnerable newly diagnosed parent. However outside of anything web based the best resources I have found by far has been BACH and other parents. Nothing else comes close to a living breathing person who has been there and is positive. BACH has been a lifeline. I can always relate and touch base there and I know that no matter how old Rowan gets they will always support me, even if he isn’t receiving treatment from them.
4- How has your life changed?
In reality, not much. Emotionally I have a lot of guilty (although I know its unrealistic) feelings about not realizing it sooner, of expecting too much of Aidan, not as much from Rowan, feeling like I never do enough for them all. But really, I think I would have that anyways, some portion of that is just my personality. On the outside, we are aware of certain things now so we mold our life subtly around those things. For example, Rowan has sensory issues so we do a lot of heavy rough play, and work on his little issues in our everyday life. Potty training is more difficult, manners less stressed. Ultimately our life goals and family goals are the same, the things we do along the way just may be different.
5- How has your family’s life changed?
As for immediate family, it’s hard to say since we only had 16 months with Aidan before Rowan came along. Your life moves and changes as you go so subtly, you don’t realize until later that it has changed. I could speculate how we would have been had we had 2 nt kids, but its just speculation. It took a little doing to convince John that there was anything there, and way more to convince my grandmother. But now it’s just a part of our life. As for the rest of the extended family, most everyone is understanding and somewhat sympathetic, I guess, if that’s the right word for it. I’m not sure they all really understand what autism is, but they adore Rowan and relate well with him.
6- How has your marriage changed?
I guess I am just really fortunate, but I don’t think my marriage has changed at all. Once John figured what I was saying has some validity to it he has been just as active and supportive as I am. I’ve heard of horror stories of other families where that’s not the case and I read somewhere that the divorcé rate in families with autistic children is something ridiculous like 50%.
7- What are your fears? Hopes? Dreams?
I try not to dwell too much on the further, and just live it one day at a time. Making little goal and meeting those before setting the next. But my real fears are things like, what if Rowan is never able to hold a conversation? How will he be able to be independent? Will his brother always have to be his guide and protector? Will Aidan resent Rowan and us for the way things are? I fear not doing enough for both of them, or doing things wrong. I hope that Rowan will learn to fully communicate and we can have conversations about what he thinks and feel. I hope that he will be able to understand how others feel. I hope he can be fully independent and successful at something he cares about passionately, like music or whatever it maybe.. Regardless to whether it is monetarily lucrative. I hope to have another child, no matter whether it is a girl or a boy, nt or not. I dream of having both my boys in college doing fabulously well studying something they have a real lust for.
8- What is the hardest part of having a child who is diagnosed with autism?
A lack of answers and facts. So much of autism is guess work and trial and error. If you have an infection they give you antibiotics, if you break an arm, they give you a cast. Sometimes it seems with autism they give you a smile, a paper and pat on your ass as you leave. All thing things he does, the symptoms, sure they are challenging at times, but that doesn’t bother me so much. I am only terrified of that I should know something I don’t that could help him.
9- What is the best part?
Rowan is his own person, totally genuine and unpretentious. I don’t think that will ever change and I sure hope to god it doesn’t! He has always been a generally happy little guy, content to himself and totally engrossed in what ever he is doing. That ability to focus on what he likes and is doing in the moment, if channeled correctly could serve him well later in life. He sees things differently and I wish I could see from his perspective.
10- If you had it to do over what would you do differently?
Shoulda, coulda, woulda’s wont get you far, but to pass on to others … I would have listened to my gut and done something sooner. I would have been more informed on childhood development so I would have recognized he wasn’t where he should have been and started asking questions. I let too much time pass dragging my feet thinking I was paranoid and being a hypochondriac mother. I would have gotten a medical diagnosis sooner too, because it opens doors that are harder to get in without that slip of paper. I would have worked harder to prompt him to do for himself, to ask for things instead of just trying to anticipate his needs and wishes.
11- What about your relationship with friends and parents, and how have they changed?
My parents (mom & dad) I don’t think they get it, but since neither is around much it doesn’t really matter. My grandmother is protective and supportive, but often sees things that aren’t really there, passing off things like oh he’s just fine on this and that, when he’s not. John’s dad is supportive, but doesn’t really understand very much. But relationships between them and us haven’t really changed. As for friends for the most part things go on as they did before. Sometimes people will say things like, I don’t know how you do it I could handle that. I hate it when people are all feeling sorry for us like we have a sick child or something. Our life is really not that hard or different that any other family with 2 kids. Our biggest problems stem from things that have nothing whatsoever to do with autism. The only thing I cab say about our relationship with our friends that has changed is it’s not as easy to talk to them about the kids. Even the ones that have kids just don’t understand the way a parent who has an autistic or at least a special needs child does. The last thing I want is sympathy, the way I see it there is nothing to feel sorry for us about. It would be like saying I’m sorry your son was born, and I am not sorry he was born or that he is autistic. Its part of who he is, it is not who he is, and it makes him different, not broken or sick. He will live a happy and full life, we just don’t know or understand the details yet.
12- Where do you go for support? Who provides the most support?
Again, BACH has been the greatest support by far and all the people there from OTs, volunteers etc., Mendy, Dana, Monica, Dee … everyone has been wonderful. Since Rowan moved to his new school the support there has been great too. They do a wonderful job keeping us informed and involved. But closer to home, my grandmother is invaluable in her encouragement and soothing presence with both the boys and us.
13- How do you feel about your child’s current level of functioning?
He is not where he should be, but I fear I have handicapped him by allowing him to lean on us when he could do many things with more prompting and support. I have allowed him to be babied and I have to stop. Right now he still is not spontaneously communicating very much and is not potty trained, those are things I want to work with him on. We are working on telling people with a prompt his name and age. I also what to work more on his self help skills like dressing, brushing teeth, using utensils, blowing his nose.
14- Describe a vivid memory or experience with your child that other parents of children with autism could relate to.
Where to begin there are so many. As a baby Rowan hated the car seat so much that he screamed and cried himself into hysterics each and every time we put him into it, well past the age a baby should out grow it … like 6+ months. We got use to it; there was little we could do about it. But of course we had a nosy neighbor who made it her business to question me about him. I’ll never forget her accusing tone when she asked me if he was OK, really OK? As if I had done something to him to cause the cries every time we walked to the car.
Also as a baby he hated baths, as some do when they are infants. But he didn’t out grow it; it only seemed to get worse as he got older. Feeling like a bad mom I would let more and more time pass between baths because I just couldn’t take the hysterics that were involved in trying to clean him. Even at 1-½ years old it took literally one person to hold him somewhat still and anther to try to clean him as quickly as possible. It was awful, the tears, sobs, heavy breathing and the look of desperation, betrayal, terror as if we were actually hurting him. I’ll never forget that as long as I live. To work him through it we tried at different times different things. Once I took him with both of us in bathing suits to sit in the tub with only a few inches of water. We lasted maybe 15 minutes before I gave up because he was so upset. We had a couple of moments that were OK, but it he wasn’t ready yet. Both John and I tried that a few times, till one day John took him and stayed in the bath for like an hour or more till Rowan really began to enjoy it. He was around 18 months old and that was our first really big break through, and our biggest to this day. Back them we didn’t even have a clue he was autistic. Now he loves water and baths, though we have had water issues we still had to work through, like water in the face and pools. He still has some issues regarding water, but nothing we can’t handle with time.
In essence Rowan being autistic doesn’t really change much for us, any more than my being a vegetarian does. He is still the same boy he was before we had a diagnosis, and it just fits into our life. I’m not trying to downplay its significance, but I feel like it’s a handicap only if you let it and are too negative about it. Just like anything you can’t let it eat you alive. I try to let him and everyone around him know that he is normal, different in some ways, but normal. I mean what the hell is normal? Its what ever you think it is, so is he. I want him to know that he has to learn some things that are hard for him, but there will always be things that are hard no matter who you are.
X-posted in thelittleelephantintheroom.wordpress.com
X-posted in superbabies.blogspot.com
The more and more I read about autism the more I hear about “the search for a cure” and every time it makes me sick to my stomach at the thought. Cure? For what? I cant classify ASD so easily as bad, wrong, evil to be eradicated, or an “illness” exactly to need a cure. Yes there are things that are difficult because autism, but what exactly are we trying to “cure”? The symptoms, like stimming? They are most often coping mechanisms or leaning mechanisms -such as if they have sensory processing disorders as many do and the stimming type behavior is actually helping their bodies to learn to process the sensory input.
I guess what I am trying to say is what are we trying to change – my son is different, but it is those differences,as much as his blue eyes, blond hair that makes him who he is. There is no way the world would be a better lace with out him or other like him, they are a different, but also an important part of this world we live in.
I am a supporter of autism research and early screening, because there are a host of problems that go along with autism, and the whole picture need so be understood. The difference is that i don’t want a cure, I want a solution to learning how to understand and bond with my son, and help him to understand and bond with others.
Parents and children with autism need help, support, and resources not a magic “cure” bluuuh!
I am a great time waste … I get so sucked up in my head thinking that I rarely write what I am thinking anymore. I end up thinking … what do I have to say that is worth anything? My like is pretty boring and routine, nothing motivating, life changing or special. I have to step back sometimes and remind myself why I began writing in the first place …… because I feared forgetting, or missing the moment or passing thoughts in my life. I remember the first time I started writing for that reason was when I was about 8 years old. My mother had bought me this little backpack that looked like a teddy bear. It hung off my curtain rod and I would lay in bed thinking and staring at it. I use to write on little scraps of paper tidbits about me, or how I hated this or that, and I would fold them into tiny squares and put them in the bears belly. I never had a “diary”, just a bear … I guess I was a strange little girl. I always felt that if someone was to read all of these little passages they would come to truly understand me, but I never allowed anyone to read them and only a few knew of there existence. I kept this up until I moved away from home at 17.
Much later around 1999/2000 I began a journal physical journal, and then in 2001 a on-line journal that I have kept up sporadically, but there was noting like my first.
I can’t find any clear pictures of the bear, but if you look closely at the top of this one you can see the bottom of him in between the Janis Joplin poster and wall hanging/curtain.
I have to say that this conference was a bit of a let down, although not as much as John seem to think.
I guess I should have asked more questions before signing up to see if this was actually the right seminar for us. It was strongly based on ABA principals, which I am not sure I really agree with, the way ABA tends to treat kids reminds you more of training a dog that teaching a child, any child, even an autistic one. That being said how ever I did gain some knowledge about functioning communication. I have also begun to realize choosing the right teaching method for him isn’t as easy as it first seemed. I have been asking a lot about PECS (Picture Exchange Communication System) and did not think that Rowan would respond to sign language ( was thinking of ASL not the modified version SEE Signing exact English) because its too hard to keep his attention and signs too complicated. But this seminar has made me rethink this. PEC seems great, but it has a lot of physical and practical drawbacks. Most of what I have learned is that signing as an aid to vocalization can be more rewarding and easier to implement across the school/home/life continuum. The biggest reason they say that teaching signing fails is teaching the wrong signs first, lack of motivation (IE immediate reinforcement/reward), and lack of consistency through the child’s school/home/life.
I have said all along that I don’t want to “fix” Rowan, he’s not broken, but I do want him to be able to express himself as fully as possible. In someways he is way ahead of where many Autistic kids are, he has lots of words he has said, repeats , and uses in a echolatti fashion. So getting him able to vocalize is not the problem, he uses his vocal cords how and when he wants to, although his sound as not clear and correct in what he is trying to achieve.
The main block with communicating with Rowan is that everything seems sporadic and random. One day he comes to me and says “drink” or “water” or “milk” – I praise him and immediately respond the the request. Another day he will bring me a cup, same response from me except I ask “do you want a drink” and then offer choices. Another day he will just drag me to the fridge and grunt or point. Another day he will just wander the house looking for cups, shaking them and the taking a test sip, and never approach me for what he wants. On the rare days (and theses days use to be everyday) he will just sit down and cry till we figure out what he wants.
I think I will be talking to his teacher & speach pathologist about SEE and PECS, and try to figure out what is the best route for him.
Here I am, writing in this blog again, when I should be writing in this blog. I started out feeling strongly about chronicling Rowans story, and I still feel that way. I blame some of my heel dragging on hating to transcribe my hand written gibberish to clean typed paragraphs, but I know a lot of it is simple mot wanting to analyze of think too deeply about what I did or didn’t see in his early years. I know that Autism is something that is not caused by the parents and all of that, but I still cant seem to get over beating my self up for waiting so long to do something when we had a gut feeling about him long before.
Now I have tried to throw my self into doing something about it, but on one hand I am dragging my feet on getting a “medical diagnosis” (which I can give a variety of reasons for), but on the other hand I feel like a hypocrite with out having it because then there is still some slim chance that we, and the school, and ECI, and his OTs are all wrong and he is just a late bloomer. But I know that’s not true and I have accepted all of this, most of the time. Then I sit on the fence of “curing autism” and all that tripe about “combating autism” and I ask myself what does it mean, what are they really trying to do? What am I trying to do, what is it that i hope for, hope to achieve?
What it boils down to ..( I love that expression – just extract all that is important and reduce the excess to vapors) is that I want Rowan happy. I want to know him who he is and I want him to be able to express what he wants and why. I want him to be able to move through life with out additional burden to being bothered or frightened by everyday things and activities. I want him be able to thrive and pursue what ever it is that strikes him as important. Do I want him to be “normal”, no absolutely not, but then I never felt normal and I don’t consider being normal a very worthwhile pursuit.
I have always been struck by the unusual and extraordinary, I suppose many people are. So why would I want to reduce him to a foul mouthed, video game toting stereo type? I’m rambling again with no real purpose. I guess I will go write and see where it takes me today.