Sometimes it all feels wrong. You know? We’ve been working with Emma on her literacy, reading, writing, typing and then a couple of months ago I just couldn’t keep doing it. I hit a wall. I kept telling myself, you’re just tired. You’ll get back in the saddle, give yourself a break, you’ll feel more energetic, you will. You just need a little break.
But now it’s several months since I gave myself that little talk and I am no closer to “getting back into the saddle” than the day I said all of that. And here’s the thing… when Em was first diagnosed, we did what everyone advised us to do. We fought and were given 40 hours of ABA, we were trained to continue the ABA after the therapists went home and during the weekends. Emma was bombarded. We called it baby boot camp. It was horrible. I hated it. I remember saying to the diminishing few who’d listen, But I don’t want to be Emma’s therapist. I want to be her mother.
I use to sit with Nic and Em in our big rocking chair, we still have it. We still fight over who gets to sit in it, though these days, Richard has successfully commandeered it as his own. But when the children were still little, it was mine, all mine and I’d sit in it with both children in my lap, holding them, rocking them. Smelling their heads, that smell that only small children have, that smell that no one’s managed to bottle, but that if anyone did, they’d make millions off all us moms. I loved my new role as mom and I wasn’t thrilled to trade it in for therapist/autism mom extraordinaire.
What was so wild about those early days was how all the “experts” I listened to, I believed they knew better than me. Despite the fact I kept reading the masses of research saying how little we actually knew, how much we had to learn, there was never any shortage of people who seemed to think they knew it all. Funny that I never thought to question them in the beginning. Or more accurately, I did question them, but I tamped those questions down because I so wanted to believe, I needed to believe that someone somewhere knew what the hell they were talking about.
But they didn’t. Not really. They certainly didn’t know about Emma. Every single thing anyone in the field of autism predicted about Emma has proven incorrect. Everything. It’s kind of astounding. But it’s true. “Oh, she’ll be mainstreamed by the time she’s in kindergarten” they assured us, always with the codicil, “if you keep doing ______ (fill in the blank).” “You’re fortunate she’s so mild. She’ll be one of those kids who loses the diagnosis,” they’d say with a tone of certainty. And so we put our better judgment aside, we tamped down our questions, we trained, we worked with her, we questioned her, we showed her the flash cards with the bike and the green t-shirt and the yellow car, we played umpteen games of peek-a-boo and sang the ABC song and Head, shoulders, knees and toes for the nine hundredth time, never questioning why we were doing this. Never asking ourselves, is this really the best way to spend our time with her? Are any of these things remotely meaningful to her or are we doing this because this is what a neurotypical child would sing or play? That Emma was not a neurotypical child was, evidently, not the point.
Now Emma’s ten. If you ask her, she’ll tell you she’s nine. I keep meaning to teach her the old, don’t-you-know-its-rude-to-ask-a-lady-her-age routine, thus letting her off the hook. Because really, who cares? We ask each other questions like “how old are you,” which is equivalent to the adult question, “what do you do?” but it’s really a way to fill in the silence. A silence that can be painful. A silence that doesn’t right the feeling that it’s all wrong. So we fill it in with words and ideas and studies and tests, but we don’t stop to think, what exactly are we testing? What exactly are we studying? What exactly are we doing? If we test someone and make conclusions based in neurotypical thinking aren’t we missing the point?
I spoke with an Autistic friend yesterday. She told me she was given a standard IQ test where she proceeded to get every single answer right, so they kept giving it to her, trying to figure out how it was that she was getting all those answers right because she presented as having so many other “issues” and was clearly autistic, they concluded that something was wrong with the way the test was being given. Meanwhile she thought it all great fun and each time they gave the test to her, she just dug in and cheerfully gave all the correct answers again and again, confounding them.
Which brings me back to all these therapies that require parents to become teacher and therapist. I’m not a teacher for good reason. I do not have the skills or the desire to be. And while I’ve stepped up to the proverbial plate again and again to do what needed to be done, I don’t want to continue. I want to be Emma’s mom. I like being Emma’s mom. I love reading to her and playing with her and dancing with her and being silly and making stupid faces and making up ridiculous sounding laughs and running around pretending to be a monster and cooking with her and showing her how to fold and sort the laundry and how to brush her hair and give her pedicures and manicures and run through the sprinklers together. I don’t want to be her teacher too.
And maybe, just maybe I don’t have to be. Maybe all those experts and autism specialists are wrong. Maybe I can just be her Mom and that’s enough.
Emma's Hope Book 
I loved today’s blog. It hit the spot. There are so many people who never know what it’s like to be told if you do this and this your child will improve. But what happens when you don’t make all the gains? In my case I got the blame. 😦 it’s very hard to wear the different hats. But the therapist hat is the hardest one to wear. It’s the one that leaves you so tired. It’s the one that can drive you when something changes and the one that can almost break you when you feel it’s all going wrong. Or it’s like that way for me any way. I’ve had to wear the hat for two. Focus on two. Never say die for two. So hard:( what’s sad is you think been there done that you just do everything the same for your second son. But it doesn’t work that way ASD is so different for everyone that even how to approach therapy changes drastically for my second son. With my first son We played the games song, the songs, made the sounds, held the cards, we made the signs put up the boards. We did the extra boot camp. I was heckled by others all the way through but I kept going. We did it again with my second son but nothing was the same. I felt so defeated. Tired! Like I just missed out on Being mom. I wore the mom hat often but it wasn’t the same for me as it was for others cause I have the hat of the therapist to wear. 😦 thank you for posting this.
Yes, with ABA I was blamed that Emma not only didn’t make the gains they were convinced she should have, but she actually regressed. With DIR she did better, but it has proven difficult to apply to academics, particularly in a classroom setting.
I loved your comment about thinking, “been there, done that” and then it didn’t work for child 2.
I have to ask what is DIR? We never did ABA with my eldest. He didn’t qualify and we found it too hard to pay for on our own. I was told he could do well with basic stuff like speech and language, OT and SI. With him we were on our own a lot to come up with a plan. Here it’s a play to learn approach. So it’s fun. But with my youngest we have been doing ABA cause doing the other way wasn’t working. As soon as we started ABA he started learning all kinds of stuff. Like self care and we have gotten some speech done too. I’m always trying to educate my self on the next new gadgets, books and stuff. We believe education is for life. Is this a new method to learning. When I read what sign language can do to help a child I started to try and learn. It’s been fun just to learn cookie we ate a lot of cookies. Lol I would love to hear about any new programs Thanks
DIR is a play therapy created and developed by the late Stanley Greenspan. It stands for Developmental, Individual differences, Relationship-based therapy also known as floortime. He wrote a number of books as well. He was a brilliant man.
Thank you. I will look up books. Never know it may have a new suggestion on activities to try. We do a lot of paintings. Me and my husband are lovers of art. I paint and craft. He draws does computer stuff. We play a lot of games with the boys and we all love puzzles. We play stupid stuff for SI cause we just like that. We jump on trampoline, I do it too:) it’s fun. We do it while counting or doing math I know weird but it opens the mind. My youngest plays tickle and we do hide and seek in the house as well as tag. We try to put as much speech in our family time as possible. Is this what you mean as floor time? We call it play to learn here or the more than words way. It’s fun and therapy is fun. It’s not nice if a therapist blames it’s clients 😦 the people who criticize me are other mothers and some family. But never my kids therapist that’s harsh. I’m so sorry to hear that. It’s hard when anyone criticizes you for your efforts to help your child. Cause your trying your best and it’s hard enough going through the day then to have a booing section. We all need a cheering section. Your hubby seems like a great one for that.I got a great one for that too. That helps a lot
It sounds like you’re doing a great deal! Stanley Greenspans DIR/floortime method is described in greater length here – http://stanleygreenspan.com/ I also wrote you him and it – https://emmashopebook.com/2010/04/30/a-tribute-to-stanley-greenspan/
Good morning! Okay, you might think I am really weird (but you might have already come to that conclusion) but see I am convinced I see the world differently than a lot of adults. I go to the park to swing on the swings and when I am there it is just me and the 4 year olds. The adults are always sitting on the benches, talking. What fun is that? Swings are SO much “funner”. And I wonder, when did adults get so dumb? There are so many adults who think they know so much, when really they don’t and rather than say they don’t they work harder at covering up that they don’t know. Adults should go to the park more and swing on swings rather than sit on benches. They would lighten up, take themselves and being “adults”, “professionals”, “researchers” whatever the heck they are, less seriously and actually, I don’t know, ENJOY themselves more and I wonder if they did, would the world be a more relaxed place???
Be Emma’s mom. Play with her. Show her the magic of creativity and imagination that time without a scheduled, organized activity allows. These years go by so fast, never to come again. She will be an adult so much longer than she will be a child, so let these years be full of play with the lessons that mothers teach their children done spontaneously and naturally.
I’ve attached a link to a Jimmy Buffett song. I hope you have 4 minutes to listen, it puts it into perspective, at least my oddball perspective. 🙂
Chin up. You are doing great!
“She will be an adult so much longer than she will be a child…” yes! I remember when she still wasn’t walking by her first birthday and I was stressed out about it, someone said, to me, “don’t worry, she has the rest of her life to walk,” and of course they were right!
Loved reading your comment and by the way, let the record show, I do not think you’re weird!
I am totally with you on this. ABA was never introduced to us as a therapy so I know very little about it, but I do remember all the OT sensory stuff in the beginning and I felt crazy trying to make time to do the exact exercises each day until i understood it all better and realized he was actually seeking and finding his own ways to meet his sensory needs and I could much more easily just follow his lead. It’s been like that with so many of the therapies. I don’t do any of them with him anymore. I do consider myself an excellent “case manager” in finding the people he needs to teach him and I skills that seem necessary but we don’t cut out any family time for therapy with parents anymore. In fact I have eliminated all his therapies for the summer except a Sped Ed teacher we pay to visit us.
Also, totally with your friend on the IQ test. My son has an off the charts IQ on record, which has been the basis for us being denied many things. I don’t discount that he is an intelligent little boy, but the test was him alone in a room 1:1 with an adult who was asking him challenging questions and puzzles and he was having a fantastic time because that is exactly what he loves. So, I think if you compare him to anyone who isn’t so enthusiastic about this type of thing of course he looks brilliant. I could care less except we continually get denied for disability related assistance because his IQ is too high and apparently you can’t be brilliant and autistic and disabled at the same time.
omg, I am on a roll this morning. I better stop now.
That’s exactly what my friend said – that she just thought the test was so much fun! But she said, if someone else, with the same intelligence has taken it, but were having sensory issues, or felt intimidated by the test giver they would have tested very differently.
I was surprised to read that you’ve been denied services because of high IQ and that that was seen as indicative of less need. (This has NOT been our problem, rather ours is the opposite, assumptions being made about a “lack of IQ” rather than an abundance. Which is also misunderstood.)
reminds me of one of my favorite quotes. The real difference between so called high functioning autism and low functioning autism is just that in high functioning autism no one sees your difficulties and in low functioning autism no one sees your strengths or something like that. Our main issue is we can’t get Medicaid and in our area ALL of the really good autism services only take medicaid, not private insurance or cash. We were fine in preschool because the school district had to pay for them but now they don’t and we can’t access them without medicaid. Which is dumb but true. We pay the Spec Ed teacher who comes to visit us under the table because it’s the only way we could get the service and she is kind and understood we had a need and we just keep our visits with her hush-hush so she doesn’t get in trouble. Bizarre.
In New York MOST of the so called “autism specialists” do not take insurance of any kind. It’s amazing and one of the biggest surprises when we first got Em’s diagnosis. I remember thinking, how is this possible? And the few who did take insurance have waiting lists of over three years! I’ve since gotten over my astonishment, and now Emma goes to a regular pediatrician who knows a little about autism, but in a way, it’s easier because the “specialists” didn’t necessarily know much more, but thought they did and they had stronger opinions, which unless I agreed with them, was not necessarily a good thing!
I remember you telling me that you went to a session at Aspen Ideas about Women Having it All. I think there was a question mark in the actual session title, maybe something like: Can Women have it all? The not too surprising conclusion the speakers arrived at was: No. Women can’t have it all. You can’t be a mother and a writer and a jeweler and a teacher and a therapist and an activist and a researcher and a scientist and a wife and a friend and have time to play and be silly and just sit in a rocking chair and smell that wonderful kid-head-smell. Even so, you’ve managed to do all that and more for a very long time and guess what? You don’t need to keep doing the teacher/therapist thing anymore. One less log on the fire stoking the stress flames. And guess what else? Joe will step up to the plate and we’ll get extra help if we need it. (P.S. extra help givers wanted!)
I suck at being a teacher and therapist. I try, I’ve tried, I’ll probably keep trying, but I’ll always suck at it. I don’t have the patience. I don’t have the temperament. I’m Irish. I probably do more harm than good. But the ‘experts’ will always shake their heads when they hear parents ‘complain’, saying “no one can ever be more effective than the parent at teaching an autistic child. No one else has the same emotional bond that helps with learning.” The funny thing is, and I may be wrong about this, but the experts that always told us these things never had autistic children!
“That’s great. Now crank it up 100%!” I can can still hear Dr. Stanley Greenspan saying that to you after you spent 10 minutes desperately trying to engage Emma with his beat-up toys while she barely made eye contact.
Hmmmmm. Maybe a parent should spend more time cranking it DOWN 100% or 150% or 2000% and go on a long walk with their autistic child instead. Or make funny faces. Or snuggle under the covers. Or go for a ride on the four-wheeler. Maybe women can’t have it all. Maybe men can’t either. Maybe we have to choose what matters most — with our hearts as our guides rather than our heads — without the guilt trips and the self-flagellation that comes from defying the expert’s pontifical commands.
Keep writing. Keep smelling heads. Keep helping other parents navigate the reef-ringed shores of autistic parenting. That is where you are most needed, that is where you are making a difference that nearly no one else can make. Just read the comments over a few times. You are helping parents. You are helping autistic adults. Maybe most importantly, you are bridging a glaringly painful gap between parents and autistic adults in a way that few people have. That matters.This matters. Keep going. Keep playing.
Keep rocking.
So just in case anyone reading this hasn’t figured it out yet, the above, amazing, supportive, loving and beautiful comment is from my amazing, beautiful, supportive, wonderful, loving (Irish) husband. How the hell did I get so lucky? Thank you. Crying. Thank you. I miss you. Counting the days until you come home. Thirteen, to be exact.
This. ❤
Right back to you! LOVE the piece you sent me! Almost finished… You rock! Oh, but you’ve been told that before!
Reblogged this on wincharles.
this is fab ❤ it
i blogged it
I had to make this decision pretty early on (well, I’m technically in the “newly diagnosed” parenting group so everything is “pretty early on” for me) — and I don’t know how to be all these roles. It doesn’t mean I don’t pick my battles wisely and support the instructors. ABA is appropriate for my child based on the progress I’ve observed and level of engagement from him, and parental training is supposed to be a major component of the program because we parents may then be able to teach and help generalize. However, I keep in my mind that my primary role is “mother” and in my case, I equate this as “being my kid’s ‘safe person'” — anything that shows me my child is afraid, I take that safe person role first and foremost.
One of the reasons I begun looking for blogs like yours is the perspective of the parents who have shifted in their mindset about their journey. Early on it is very easy to adopt the “throw everything but the kitchen sink at the kid” mentality (I heard this term said when I went to a parent support group) and I never believed that. I understood the need for early intervention and intensive intervention, but I also believe in down-time and quality of life and some semblance of “family time” that does not revolve around therapy or therapeutic approaches.
It seems more and more parents are coming to the conclusions it took me much longer to come to. (This is a good thing!) It’s wonderful you knew right away that “throw everything but the kitchen sink at the kid” was not the way to go. I didn’t know that. We tried just about everything, as anyone who has followed this blog from its beginning knows. There were so many books out there claiming a “recovered” child, it didn’t occur to me that “recovered” was a questionable idea, at best. Always good to hear from you Jane!
email me as i want to give a link for Emma OK?
Hi Win, you can send the link here or on the email you have: emmashopeblog@gmail.com
Thanks Win!
ok
http://www.peakparent.org/PCP.asp
First off…WHOOT WHOOT for Richard’s reply! You two DO have it all in each other! You are an inspiration! 🙂 Brett has been in various therapies since he was 18 mos. I said VERY early on the same thing that you did…..I do not wish to be anything else but his mother and I have stayed pretty true to that….probably the Irish in me as well! :O) I agree with Jane that family time is important and so is his down time. He continues with ABA in the summer months because it has helped him…if at anytime I thought he disliked it and it didn’t help him anymore we would end it. I too agree that it really comes down to what works for your own kiddo and what fits in best with your family dynamic. We are very much about family activities and giving Brett time to just relax and not have to be “ON” so to speak. New parents…find your own balance and follow what your heart tells you to do! There will probably always be a little part of me that believes if I just tried one more thing, he would be speaking at least. I can not lie about that. When I get those little twinges though I just sit back and look at this overall happy little dude and how well he does being him! Makes me realize we did things the way we felt was best for all of our family and it has worked out OK! HIs health and well being will always be top of my priorities as it is with my daughter as well. Loved the pic of you and the kids! So sweet!! 🙂
Thanks Becky! Yeah, Richard is awesome.
I know ABA has helped a great many kids, but I’ve never gotten over my resentment that it’s touted as THE method that will help ALL children on the spectrum, when it is clearly NOT the case. For those of us who tried it and saw how detrimental it was, this kind of thinking added so much pain to our already frazzled nerves. It didn’t help that the ABA therapists blamed us and later at her ABA based preschool, they blamed HER as the reason it wasn’t working. I remember thinking – you’re blaming a three year old? Maybe you should reevaluate the therapy you’re using! But they didn’t want to do that.
It sounds like you had a really bad experience and I am sorry for that. I only speak regarding our experience… I do not ever condone therapists blaming parents or a child for something not working…not EVER. I have been blessed with good therapists that would bend over backwards for Brett until something clicked to helped him to progress…even if it meant backing off of a particular program that was going no where….that certainly happens. I hope I didn’t sound like I was preachin’ ABA because I didn’t intend to do that. There are a multitude of things people can try or not try… I just wanted to add to your original entry that I do think that what is most important is that whatever one decides to do or not do is OK if that is what is the best fit for the child/family etc….No need for any moms to experience that “momma guilt” we can so easily get ourselves wrapped up in. I send Brett to school, therapy, horse back riding etc…just like I do our NT daughter who attends school, dance, soccer etc….I am not trying to “fix” him nor am I trying to ever imply to him that something is wrong with him…..He needs guidence and structure in areas of life just as she does. They both deserve their down time as well. They are both great kids who I think are fundamentally solid with positive outlooks. I would hope he doesn’t resent me in any way for helping him learn things just as I would hope my daughter wouldn’t. If anything, I think that when they learn and they succeed in an area, it instills even greater confidence in them….not less.
Becky! I have never read anything you’ve ever written and felt you were preaching anything EVER! I love hearing from you and LOVE your insights and thoughts about Brett and what’s helped, what hasn’t.
I went on a rant, but not because of ANYTHING you wrote, but because our experience was so uniformly horrific with ABA. But believe me that little rant of mine (oh can I go off on a rant!!) was not directed at you or anything you wrote. 🙂
Oh i know dear! I told u early on that i always have that fear that what i write will b misconstrued or hurt someone! Didn’t want to b doing that! 🙂 i love your blog and love reading everyone’s input as well! Much respect for u all! 🙂
😀
Richard speaks the truth. You are helping parents. I have only been following your blog for a few weeks but it has been so helpful to me. My little girl is only 3 and has a very busy therapy schedule but I still feel guilty when she is just playing by herself or looking at books alone. Sometimes I think that I should be going over her words or working on some of her ABA programs. I am realizing that she needs down time and it is okay to just let her be…I don’t want to be a therapist either. And someone has to do the laundry and clean the house!
Hi Kristen, so glad you left a comment! It’s good to meet you. Welcome to the tribe!
Nobody is an expert in treating autistic kids. But lots of people are experts in making money off of autistic kids. They’ll string you along as long as they can with the false hope that some day your child will become neurotypical (the way kids are supposed to be), and when you finally have had enough and give up, they’ll blame you for it and exploit as much guilt as they can instill into you over it. All the therapy and ABA and evaluations and all that stuff just reinforces to the kids on a daily basis that there is something wrong with them. It becomes a self-fulfilling prophecy I think and they go through life with less self-confidence and much more stigma and if they don’t reach their full potential they’ll get blamed, or their autism will get blamed for it.
An autistic cousin of mine is a therapist who specializes in autism. She also has two autistic kids. She gives them no drugs and teaches them self-advocacy skills, nothing else. She was thinking of moving to the west coast once because she “did not like the culture of the clinic” she was working for and I asked her how she would find clients there. She said it’s all about the insurance programs. You have to understand the insurance programs and which diagnoses are covered for how much money.
Always love hearing from you! When Em was first diagnosed they gave her a PDD-NOS diagnosis. They weren’t sure if she fell on the spectrum or not, but said, she certainly needed the services. Which just goes to show how fragile the current system of diagnosing is as she quickly went from PDD-NOS to “mild autism,” to “moderate autism” and has occupied that place on the spectrum ever since. But these are all constructs that need to be re-evaluated. Emma’s innate intelligence and assets are often overlooked or are undermined in the eyes of therapists and teachers because of her “moderate autism.” It’s a lose/lose situation.
Yes, autism diagnoses are extremely flawed, and therapists don’t really know what they are doing. On this topic, you might find this study interesting.
http://weill.cornell.edu/news/releases/wcmc/wcmc_2011/11_09_11.shtml
It was conducted last fall. I have a draft of a blog post on the topic of diagnoses, in which I will cite this study, but the post is coming along slowly, especially with my busy life.
When Emma was diagnosed their findings were based almost entirely on Richard and my responses to various questions!
Thank you Ariane! Great to meet you as well and so happy I found your blog!
Why does the whole notion the any one “developmental pervasive developmental disorder” can lose a diagnosis or that should even be a goal? I know in my generation they tended to label your autism residual once they knew you had at least and average IQ and could talk and your parents were then encouraged to forget all about the A word in case that somehow made you “backslide” into being more autistic again but I thought understanding of autism as a longitudinal issue had improved since then.
I spent years knowing the word applied to me and having that denied only to get to university, have my GP get my records and explain how that all worked. I was in deep denial as a first year university student so my reaction to his comment that my autism didn’t seem very residual to him was confusion and then shame. University was a place I had longed dreamed about and I wanted to at least seem like the other students.
My GP was ahead of the trend really there. It would be years from then still before the term Asperger’s came into play and with it a growing awareness that the person in front of you testing off the scale in so many respects could also have autism. It would in fact take my GP a number of years to get my psychiatrist to consider the autism as my primary issue not some interesting little tidbit about me that barely had to be considered.
At that stage in my life because of the shame I felt about being autistic or being autistic enough not to pass anyway I did cheer myself up reasoning if it is a developmental disorder I can still catch up. That like Data I could attempt to outgrow my programming and become human. It was a sad quest really. A quest I would probably still be on, if my complete failure at it and attendant depression hadn’t finished me off if access to the internet hadn’t come along.
It was only when I could see that my experiences could be of use to some parents with children being diagnosed that I started to feel better. It took several years to get to a point in time where I wasn’t deeply ashamed to be autistic. It wasn’t rational to feel ashamed. My degree was in psychology with a strong dose of developmental so I knew it wasn’t rational but those kind of feelings never are.
When I first started interacting with others on the spectrum – those who would make out like having autism was something to be proud of also made no sense to me. In theory it would make as much sense as being proud to be 184 cm tall. However I did come to appreciate how like any pride movement it was part of moving from a position of shame and stigma to acceptance.
At one point in those years I went to an autism conference in Toronto with a parent who lived close to my brother and met some of the other parents from the channel we chatted on. There were a few people there who were adamant their child had indeed lost their diagnosis despite it being evident they had not.
There was one workshop for those on the spectrum. Oddly enough it too seemed to be based on the hypothesis that this was possible. A very autistic seeming autistic author who seemingly hadn’t been briefed that this one program event was for those on the spectrum proceeded to tell us about autism and how he outgrew it while both seeming quite autistic and totally oblivious to the confusion on the part of the few people on the spectrum who were there.
Even now the fact a “professional” knows you have autism doesn’t mean they get how profoundly it can impact you. I am in the middle of a very serious depression caused by a rather catastrophic change in my life circumstances many months ago now. It’s the first time in close to 15 years and I was told all those years ago that my autism made my depression untreatable so they were essentially giving up. This time they tried again and reached the same conclusion. They didn’t totally throw in the towel though but for the past month I have had nurses coming around daily. This is meant to help.
Today’s “help” seemed entirely oblivious to the stress that going to a strange place would cause me. She didn’t mind too much because my reluctance to enter an unfamiliar place with unfamiliar people gave her a chance to look competent. (It’s mean of me but I have to suspect such chances are rare for her) Afterwards when it turned out I would have to go back to this place fairly often if I wanted the advantage the program conferred (cheap, nutritious, prepared frozen meals) she seemed genuinely baffled that my issue with going back wasn’t entirely logistical. Was it too far to go on my bike or bus etc… Having been dragged there once by her of course all I had to do was try and not be ridiculous because after all they have cheap food that I don’t have to cook. I was near tears from being overwhelmed by it all at several points but the “caring professional” with me was entirely oblivious. On the way home when she was interogating me more about why I couldn’t she seemed more interested in her broken nail and the logistics of applying a bandaid while driving than anything I was able to summon up.
This will become the official position on this in my file I gather. They did what they could for me and if I won’t try harder to do something easy and good for me then what more can they really do? It’s of course far easier for me to try (in a rambling sort of way) to explain how hard and distressing it really all was here than I could ever do in person. The less they understand and the more they insist hard things are easy the harder everything becomes.
I wish it were actually possible for people to experience your life however briefly. If the various doctors and nurses who get to pass judgement on my effort or lack thereof had to live as me would they finally see how much effort it all takes. Would they see that scoring off the charts on an IQ test is really small comfort or help when you won’t necessarily remember to eat or when the sum of you distress renders you unable to interact at all.
Years ago a housekeeper summed me up to a nurse as “a tragic misplacement of intelligence” . It’s a bit long for a t-shirt I guess.
Sorry it seems like once again my response winds up being longer than your post. I could say all this to my dog but although he moves his ears around he doesn’t really seem to get it. Well to be fair to him he understands my struggle more than most of the people for whom I am work, I suppose having speculated about how few times that nurse gets a chance to seem competent I can’t exactly steer her to your blog.
I always appreciate your input Gareeth! Just wanted to let u know that! 🙂
So glad you’re writing it all here and not just saying it to your dog! I really need to hear your experiences, it’s an enormous help to me and sadly I am always surprised with just how awful some of your experiences have been. Really hate that nurse.
My parents are not like you though. They couldn’t and still can’t accept autism. If you asked my mother to describe me she would hit pretty well every major criteria but deny vehemently that those things are anything other than me or occasionally that I am “sick” in some vague way. My brother is decent and married a wonderful woman but they are very far away so in my day to day life no one steps up to the plate for me when I can’t.
One of the more worrisome ways in some ways about your post is that there is still that element of blame on the parents. I have always thought that a large part of my mother’s denial stems from how autism was thought of back then and myths she couldn’t bear if she applied that to me. If parents are still getting blamed or encouraged to think their kid can lose the label in adulthood some of the members of the younger generation will still struggle harder than they should have to.
Today for me is mercifully a day free of “help” as we are supposedly in transition between two forms of support. I don’t get a strong sense the new one variety has any clue what to do either though but we shall see.
My dog is quite wonderful and might be getting service dog designation although I have some qualms there. This is his webpage: http://www.dogster.com/dogs/914607
Another autistic friend of mine was quite horrified that I blog as if Shadow is speaking. She thought I was too rational and logical and too autistic to do something she saw as cutesy so be warned if you do go.
Gareeth, I left a comment on Shadow’s blog! So great and Shadow is adorable!! You must get stopped all the time. How could anyone walk by without bending down to pet him?
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