May 30, 2018 § 1 Comment
I am so glad to see this video. On one hand, it is horrible – but it was our life for so long. I find it so sad that the one mom who had placed her child in residential services didn’t want to be shown on screen. It is hard – you don’t want to be the parent who gave up and even though you want to think that people will be understanding there are always those people who will say “I could never do that.”
December 2, 2009 § 2 Comments
My grandmother has been in the hospital for almost two weeks now. She had and obstructed bowel that had to be surgically repaired, then the incision wasn’t healing properly and last night she had to have it operated on again to repair a small hole that was developing in her abdominal wall. I have spent a good deal of time in the hospital just hanging out with her. She suffers from Alzheimer’s/dementia and is 86 years old.
Last month I was reading A Child Called Noah and A Client Called Noah by Josh Greenfeld, which describes his family’s struggles dealing with their autistic son. One of the lines that stick with me was Greenfeld’s description of his feelings with Noah. He describes how, with a normal child when you do things together, there is the delicious feeling that one is storing up memories that will be pulled out in future years and enjoyed again and again. With Noah there was not that feeling for Mr Greenfeld. He felt that those things that happened with Noah were felting and vanished, there would be no echo of memory in the future of good times with a beloved father. Not knowing Noah it is hard to say how accurate that view is, I know with Rachel, who is roughly at the same “place” on the autism scale as Noah, it is not that case that she doesn’t remember, it is just that time seems somehow less anchored for her. Her lack of language doesn’t equal an inability to recall events, enjoy the moment or even anticipate something she desires, it just makes it more difficult for her to express those abstractions of memory, desire and hope.
It is very easy, since Rachel’s experience of time and events is somewhat “off” to say things like “Well, we will do Rachel’s birthday on Saturday because she doesn’t get that the 10th not the 14th is her birthday.” And this is true. Rachel is more than happy to celebrate a birthday or a holiday on an alternate day. Her sense of anticipation doesn’t extend to checking the calendar and as long as cake is eaten, candles are lit and “Happy birthday” is sung the actual day doesn’t matter so much. But her inability to anchor the memory or talk about it later doesn’t rob the event of significance. It is still important. A fact testified to by the way that Rachel is slave to routine, there must be cake eaten, candles lit and “Happy Birthday” sung in order for it to be a “Birthday.” Rachel is very much a creature of the moment. I hope that someday Rachel and I will meet in Heaven and share what all these things meant to us both.
My grandmother’s memories have lost their anchor. She doesn’t know if it is 1958, 1985 or 2002. She remembers people and relationships but there is no timeline. For her it is perfectly sensible that she is staying with neighbors in the town she left in 1968 while talking to me about my daughter born in 2001. Her short term memory is most horribly effected. She will not remember this evening that I was with her last night, she will be just as impressed with the sweater I am knitting for Hannah as she was the last 12 times she saw it and she will not remember what her surgery was for, how long she will need to recover or where she will go once she is discharged – we will talk about those things every 45 minutes or so.
If no one familiar is with her my grandmother not only loses her sense of time, but she seems to lose much more. Paranoia and fear set in with the constant parade of the unfamiliar. The nurse has no place in her long term memory and with no short term memory granny has no way of placing the hospital staff into her current experience. The staff is more than strangers, they are people who seem like they should be familiar, they call her by name and know details about her life, yet granny has no memory of having seen them before – this makes them seem threatening. Especially in the evening when coupled with “sun-downing” this lack of anything familiar aggravates the “normal” emotional effects of Alzheimer’s and granny spirals down into a paranoid, depressed place where everyone loved and familiar has abandoned her and left her alone in a strange fog of unconnected experience. In the morning though the terror of the night before is gone, lost and unconnected to any memory.
It is very tempting to say it doesn’t matter if someone is there or not because she will not remember. But is memory the judge of what is important or does the importance of our actions lie in the moment as experienced? Duty, that sense that she is my grandmother and I must be there for her, gives me a firm kick and says, “go sit with her tonight because being there is what is important”. Being there gives me a sense of importance in a way, a feeling that I am doing something worthwhile and somewhat noble. It allows me to work through the complicated issues with my mother – I can very clearly see that it isn’t “just me” that falls second or third on her priorities, but all relationships fall somewhat lower than prime in her priority list — where career is number one — and I can comfort myself, polish my somewhat bent halo, and note well and again that I am not doing what mom does. I can’t help but remember reading in psychology the perverse theory that all good things we do are in fact, no matter how unpleasant they might seem, actually attempts to gratify some internal need. The martyr proves their faith and fulfills their hopes in God even to death; death is in fact more palatable than forsaking a faith in which they have invested so much of their self-concept. C.S. Lewis muses on the “mother” in “The Great Divorce” where he speaks of the danger of a “mother-love” that becomes its own idol, the mother who loves through a sense of possession – that the child she claims to want only the best for becomes an expression of her own desire to feel needed, wanted and loved.
So, being human my motives aren’t pure, they cant be. How can I ever completely separate the corporal work of mercy, visiting the sick, from wondering if sitting with my grandmother is as much about storing up “karma”, setting up an example and expectation in my children that this is what family does? Will they internalize what the see me doing so that, at some point in the future, they will feel duty kicking them to come spend time with their aged mother? Part of me doesn’t want to disappoint my grandfather, who passed away in 1994 – does he worry about his “little-bride” all alone at night? Is he glad that I am there? Do angels sit with me and wait in this strange place, not quite in the Valley of Death but approaching it? Will she look back when she is on the other side and think well of me? While I am definitely there for her, I am also there for me and the hope that what I do is pleasing to God, my grandfather, my children and to the person I am meant to be but am not quite yet.
In the end none of my internal wanderings and even struggles really matters — what matters is the current moment and the experience that we all are going through right now. It doesn’t matter if she remembers last night, or Sunday, or who her nurse is or even where or when she is. Granny needs a familiar face, a hand to hold, someone to hunt down a cup of ice or the nurse or adjust a pillow — most of all she needs someone to anchor her to her own experience. Experience is more important in this sense than memory, for granny right now they are unconnected. In a way the memories are really mine. They are really her’s also, but for the moment they can’t be her’s, they are just mine and I hold onto them for her and I both in the hope and expectation that at some point we can share them again.
August 19, 2009 § Leave a comment
I am reading “A child called Noah” by Josh Greenfeld. It has been an interesting experience. The book is basically pulled from Mr Greendfeld’s journal describing his autistic son and how the family’s life is affected by Noah’s autism. Some parts of it are personally hard. They are almost perfect reflections of my own experience; in fact some of the passages might have been ripped right out of my own essays about life with Rachel.
The book has been borrowed from the Multnomah County Library and I am sure it has been read many times but interestingly someone before me decided that all other readers could benefit by their personal additions. Yes some yahoo went through the book and underlined various “important” passages. Unfortunately the defacing former reader obviously has an axe to grind (or maybe more). In the first chapter they wrote “God d*** them” next to an underlined passage about how little help the medical profession had to offer. Now why in 1969, when doctors knew even less than they do now about learning disabilities in general and autism in particular, the medical profession as a whole was worthy of damnation for not being able to tell the parents of an autistic child how to “fix” their child is beyond me, but there it is. Well, actually it isn’t anymore. I have an eraser and have been contentedly removing the underlining and “comments” that bother me as I come across them.
July 2, 2009 § 5 Comments
Nothing is particularly up. I think I am having one of those weeks where many things are causing me to think about Rachel’s autism and all the things we have done, seen, tried, been through and what will happen next. I also have seen, for the first time ever in the popular media, a book published on autism that was NOT the “my child is recovered from autism” story – which doesn’t mean there haven’t been others, but I haven’t seen them. I still need to grab “Boy Alone“, but I am looking forward to it from what I have read so far, because these voices need to be heard also. My voice needs to be heard, Ashley’s voice needs to be heard and Rachel’s voice needs to be heard too. Hopefully Karl Taro Greenfeld’s work will help there.
When I see someone out on the talk show circuit: “For $29.95 buy my book, or better yet all five, and I will show you how to spend thousands of dollars on treatments that have — at best– anecdotal support so that your child will be recovered too. That is if they are in the 3-20 percent that can recover in the first place. ” I find it annoying. Yes, yes I know I shouldn’t. Those wonderful talk-show circuit celebrities in the spot light are just trying to give a voice to all those moms and dads out there struggling to recover their children from autism and they have really special insight into this because the did the right stuff. I find it annoying because they don’t talk enough about the 80% of children that don’t get “recovered” — in fact they don’t talk about them at all, other than in passing, as the standard disclaimer that one or another treatment won’t work for everyone. They sell hope, they sell a lot of hope and I will give you that hope is needed, but hope doesn’t compensate for the 80% reality, especially not for those on the severe and profound ends of the autism spectrum. If your child is on the severe end of the spectrum, yes, you need hope, but you need reality too. You need to know that as your child ages things will change – sometimes changes might be good and others will be challenging. You will need support, you will need to have a plan for what to do as your child enters adulthood. You don’t need to be physically exhausting and financially bankrupting yourself trying every single cure d’jour out there and you do not need to feel guilty about not being super mom (or dad).
So if that is what is up, why do I hate warrior moms? Short answer is I don’t. I don’t hate warrior moms at all, in fact it has at times been a word I would use to describe myself. I really have nothing against moms (or dads for that matter) who want to describe themselves as warrior parents – as long as their spears aren’t pointed at me. And, amazingly, some parents of autistic children do just that. Crazy I know, but please stick with me for a moment.
I think for some parents of younger autistic children parents of autistic children who are older, teens or adults, can be very frightening. Because our children are living proof that not everyone gets recovered/cured. Occasionally this manifests itself in the assumption that there must be something we did or didn’t do. Did we not try “X” diet? Did we start early intervention soon enough? Did we do enough hours a week? What about heavy metals? I have seen it, the mom with the younger autistic child, she is sure – absolutely certain – that there must have been something we didn’t do. And she is right, there are a lot of things we didn’t do. We never tried aversion therapy, we only gave Secretain two rounds, we tried wheat/glutton free for a couple hellish months, we never pulled out the carpet, or re-paneled the walls. No one can do it all and there is a fine line between trying “everything” and driving yourself and your child beyond with is good.
But Rachel wasn’t one of those “normally” developing children that suddenly became autistic. She was different right from the start. At three weeks I remember my mother noting the intensity with which she would stare at her jumpsuits striped cuff. There was always something a little off – she would get so upset with the least variation in her routine. We thought she might even be deaf at one point. Further she has no less than three cousins that are on the spectrum on her father’s side. So yeah, I think it is probably genetic too. But even with the knowledge that Rachel has probably always been autistic, and even knowing that she was never in the high probability to recover group, it is difficult to keep an even countenance when the questions (all well meaning of course) come from someone who has heard the latest celebrity explain how to cure autism. THAT is what I mean when I equate the current “Warrior Mom” mentality with the “Refrigerator Mom” mentality of the 50s and 60s. It isn’t that I don’t think warrior moms are wonderful people advocating very hard for their children. But the reality is that there is a cultural assumption perpetuated by the media that if moms and dads do enough or try enough then they too can cure autism. This is not exactly a positive thing for parents of children who are teens and adults and still firmly on the spectrum. It is almost mind boggling that parents of autistic children want to jump on that band wagon, but some are more than happy to do it.
So if you are a warrior mom and you think I have totally lost it, don’t understand, am really mean to Ms McCarthy (because I mention her name once in passing as someone who claims to have “recovered” her child from autism) or whatever that is FINE. I really and honestly hope that you find that thing or a combination of things that reduces your child’s autistic symptoms and I totally applaud your efforts to do so… BUT (you knew that was coming right?) Do not make the same mistake I did. You may find that your child at 14 is every bit as autistic as they were at 4 and it will be ok. It won’t be normal, but it will be ok. You don’t have to beat yourself up, or let anyone else beat you up over it either. And once you get to that point you will likely find it every bit as annoying as I do to have to listen to the person at the grocery store, or your aunt, or the new neighbor ask the same questions about Diet X and Music therapy and you will smile and sigh and go on, and if you are like me you will rant to your blog because, well, sometimes you just need to rant. Because you need to say it. I am Darcee, my daughter Rachel is 15 year old and is severely autistic. She will always be autistic. I love her and she is a happy girl most the time. Her life is not normal, but it is hers and it is good and autism is just a part of that. I didn’t fail her, though I sometimes have felt like I have, but she is and will always be autistic and my daughter and someone who is loved.
June 22, 2009 § 2 Comments
So, yesterday at mass was one of those minor disasters.
We had Rachel with us overnight and everything was going well.
She was a little agitated when Mass started. I am not sure why exactly. But right as Father stepped to the ambo to read the Word Rachel lost it. Completely. So badly that I had to take her out. I couldn’t even control her by myself and Kyle had to help. Ashley stayed in mass with the younger children and we drove Rachel back to her group home, and came back. This is the first time Rachel hasn’t stayed through mass since we started attending Holy Rosary and for at least a year before that.
Once we got Rachel out of the church we sat with her on the steps to give her a chance to calm down. She would alternate between being just sad (which is fine) and being out of control (which means mom or dad get pinched) and then we just gave up on the idea of getting her to come back to mass and decided to drive her back to her house. We got Rachel to the car and she was really, really not happy to be leaving. We decided that it would be safer for everyone if we both went in the car with Rachel. She has “lost it” in the car before and attacked the driver. So having one of us to help control Rachel if she got out of control was important.
I went inside to tell Ashley that we would be gone for a little bit and to just hang out with the little ones at coffee and donuts if we didn’t get back before the end of mass. I am so thankful to have such wonderful children. Josh whispered to me that he would be good and to remember the movie in Rachel’s bag. Rachel had put a movie that we had checked out from the library in her bag on the way out of the house and we had asked the children to help us remember that it was there so she wouldn’t get it back to her house without us noticing. Sarah and Hannah took the whole thing in stride. Ashley reported later that Josh and Sarah were a little rambunctious right after we left, but once she sat between them they were fine.
Rachel was ok in the car. She started saying “Bad… bad! bad!” and crying. Real tears were running down her cheeks. She knows when she has crossed the line, but she doesn’t know how to stop herself before she gets there. Total lack of impulse control in action. When we got to her house she rang the doorbell and asked for a kiss. She wasn’t happy with herself at that point. We weren’t particularly happy with her either – a few more bruises, a scratch and a couple bites later – but Rachel is Rachel and we love her. She got her kisses and hugs and then ran to her room. At least everyone was safe.
We got back just as mass was ending – just in time to join the children for coffee and donuts. Everyone at mass pretty much saw the whole event. I got several hugs and sympathetic inquiries, which makes me all the more thankful for our parish and our friends. Our priest came up and let us know that he had seen everything and had been praying for us. This means a lot. I know that Father Anthony values a reverent mass and for him to come to us and express his understanding was touching. I really hate when Rachel’s behavior affects the mass experience of others. It doesn’t happen very often, but when it does it is distressing. I know how much having a “good mass” can mean to me if I am struggling with something and how comforting a peaceful mass can be. I would hope that Rachel’s behavior wouldn’t ever intrude on that for others, but I know that it would be impossible when she creates such a disturbance for it to not. Which makes me all the more thankful for the prayers and understanding of others who were there.
I know she love mass, and I could see how sad it made her that she had to leave. Hopefully Rachel will be able to participate in the mass next time. She will just be the young lady with the golden curls who makes the occasional non sequitor noise. Thank you to anyone who was there and prayed for Rachel and us. Thank you for your understanding and support.
Of course writing this I realize I never really fulfilled my Sunday obligation. : -/
March 18, 2009 § 5 Comments
Last fall I was called and interviewed by U.S. Catholic for on an article they were working on about autism. It was really a fun experience. I also wrote a small companion piece for the article. Both the article and my little piece are up at U.S. Catholic’s website.
We have also gotten to the official “announcement stage” of our newest little one. We will be having a baby in late October. As you can imagine the children are all overjoyed. I am still feeling that slightly dreamy ‘overwhelmed’, but am I overwhelmed by how wonderful it is to be adding a new life to our home and all the little things that bringing a new baby into the world mean.
I think my brother-in-law said it best yesterday. “I know your kids mean everything to you guys”. And they do. There is nothing we give up, nothing we “miss out on” that could possibly matter more than our houseful of laughing, crying, dancing, playing, occasionally fighting and always loving and beloved brood.
February 10, 2009 § 9 Comments
When Rachel was preparing for her First Communion I created a couple tools to help her prepare. The first tool we created was “Rachel’s Jesus Book” and the second was a social story about attending mass and receiving Communion.
Since Rachel was born she has attended religious services. First in the LDS Church and then when she was about three we started attending Catholic Mass. By the time Rachel was 9 we had been attending weekly mass in the same parish for about three years. Mass wasn’t something new to Rachel. The Jesus book was created to help her more fully understand the imagery in mass.
The social story was more a practical guild to receiving the Eucharist. The order of the mass, how we receive and what it means. I want to think that having the two separate books helped Rachel pin-point the Eucharist as the pinnacle of the mass. Attending worship services as a community, the prayer of the mass, the divine liturgy are all very important, but they are nothing without the Body and Blood of Christ. « Read the rest of this entry »