There I've said it.
Now I've probably pissed off any adult autistics that actually read my blog and possibly some of the parents.
Still it is true. When I was pregnant I didn't think "I hope my older son has a hard time making friends. I really hope my younger son still talks in single words at 15 years old. I want a family that can't go over to the grandparents' houses because the younger one cannot follow simple rules. I want to spend every family gathering taking turns with DH sitting outside and watching the younger son climb trees. I want to still be explaining basic idioms to my 18 year old. I want to stop taking family vacations when Alan starts having meltdowns on the beach. I want to stop certain fun family traditions because my 14 year old won't go out in the dark."
Does anyone think these things?
But as soon as I say "I hate autism" people jump all over me.
I really find it hard to believe that anyone wants this life. Don't get me wrong -- if they ever would find a cure, I would not force ANYONE to take it. I would discuss the options with Joe at length. I think he would chose to take it, but if he said "no" that would be that. Of course so much would depend on side effects that even discussing the possibility is sort of foolish.
But I get so frustrated by the "neuro-diversity" crowd that thinks we do not need a cure. Maybe they don't. But I do. I want to unlock the mystery inside of Alan's brain. He is so cuddly and affectionate and has such an infectious giggle but he also has a blood curdling shriek that I don't understand. I try. I come up with all sorts of interpretations, but I just do not know what he wants some days.
Trust me, I get that life isn't fair. DH and I regularly joke about
that. Most of the time, I laugh about our life. After all, it is
inherently funny to watch some of Alan's climbing activities. But when
he is wrecking our house and trying to climb on the electrical fixtures
and the heater because we aren't letting him outside to climb, it is a
little less funny. When he was going through his "poop smearing" phase and we were cleaning his room at least every 24 hours, that was definitely less funny.I am terrified quite regularly when I think of the future. I have a child that will need life long care. What happens when I am not around to provide it? My older son cannot care for my younger one. Both DH and I are the youngest in our respective families. Th
at means all aunts and uncles are older than us. What happens when Alan is a 30 year old adult and everyone around him is 60+? He can already overpower me and he is still (marginally) smaller than me. When I said that Kelli Stapleton did the wrong thing but I wanted to understand it, I was criticized. Someone said that anyone that thought like that didn't want an autistic child. That in fact, they wanted a neuro-typical kid. Um, yes. Actually I do want a neuro-typical child. Two of them would be nice. I love my boys with all my heart and soul, but I don't want them to have all the struggles they do. If some people believe this makes me a bad parent, then so be it.
I've never claimed to be perfect. Far from it, as a matter of fact! The popular expression is "love the sinner, hate the sin." Well, I love my autistic kids but I hate their autism. That is just the way it is.
Wow. I commend your honesty. I seriously admire you going THERE that place no one wants to admit. And while you might get some hate, I think you should be admired for how much you love your boys.
ReplyDeleteThanks, Kerri!
DeleteI wish I could hug you right now, even though we are strangers. I echo these thoughts, these harrowing feelings, that are dripping with the guilt and shame that society pushes on us, that we push on ourselves for simply feeling them.
ReplyDeleteThanks, Mary. I agree.
DeleteThere's the little matter that your sons cannot be separated from their autism. The kid and the autism are one and the same.
ReplyDeleteAnd there's the little matter that when you say you don't want the autism that you hate the autism that the autism is wrecking YOUR life, there's an excellent chance that what your boys hear is that you do want THEM (because they ARE their autism). That what you really, truly want is a a completely DIFFERENT kid, a non-autistic one.
(A little hypothetical: Pretend you are a devout, Evangelical Christian and it turns out that your kid is gay. Imagine telling the kid that you love him, but hate the "gayness". That you would do anything possible to "cure" his "gayness". Do you think your son would feel loved and accepted by you? Or would he feel that, well, you don't love him and want a different, 100% heterosexual kid instead).
I am always inherently skeptical when someone hides behind "anonymous" when commenting on a blog but since I allow them, I am going to pretend we have an established report and that you actually give a shit about me. Yes, I did say the autism is wrecking my life. But I also think it is wrecking theirs. My younger son LOVES going to visit his grandparents, but because he climbs on the chair lift at one house and insists on going to a play ground at the other no matter what the weather we always have to bring him home kicking and screaming.
DeleteWhen I was growing up, I heard multiple times from my mom that I was "supposed" to be a boy. She had two girls and then a boy and as the youngest, I was supposed to round out the family. Yes, I could have internalized it as she doesn't love me because I'm a girl, but she still showed me that she loved me in her actions. I happen to believe that actions speak louder than words ... or even shrieks.
As for your hypothesis, I didn't say I would do ANYTHING to cure it. Any possible side effects would definitely have to be taken into consideration. That said, to a kid that is looking at an institution because I will not be able to care for him in 20 years, I think a cure looks pretty appealing.
"Anonymous" doesn't know you very well and it shows! Enough said.
DeleteMy son has aspergers, and while I love his quirky take on life, he and I both hate the anxiety that makes life so hard for him, and the resulting anger that upsets the whole family, and the lack of interest in exercise and poor eating habits that could ruin his health and shorten his life, the difficulties understanding social cues which means that he struggles to make the friends that he wants to make, and the behavioural problems that get him into trouble in school.
DeleteSo yes, he might be better off without it.
I can totally understand your hating the autism. While Willie does not lash out, he constantly 'talks' about the same few things 20 - 40 times a day, he will interrupt people, he will grab other people, even perfect strangers, when he wants to 'say' something. He is non-verbal but uses some sign or communication device. I too worry about him when he gets older and my husband and I are not around; I can't guarantee my other 2 boys will be able to or have wives that will want to help clean him/help him with his personal hygiene. What I would give to get into his head and see how he processes information and how he thinks, how he sees the world, how I can make him understand things better. It's like living in the dark with candles that will not stay on, some will not light up. It is hard to see grandparents that have a difficult time with the kids - I'm sure it breaks their heart the relationship can't be the same as others. Our parents get less patient with Will as they get older. Love the short loving moments you get - the hugs, the head on the shoulder, the blowing of kisses. Thank God one of the candles is lit!!!
ReplyDeleteCandles are a great analogy!! To be perfectly honest the grandparents are not always very patient with my younger son, but they do try. It is just so much harder when you have an impulsive, 170# guy who can easily flatten one grandma and probably knock all the other grandparents over. They are just already vulnerable at their ages that exposure to Mr. Gusto isn't a good thing. :-(
DeleteBig hug to you. I do understand. I am concerned about my children as well and their future but have to believe that God has taken care of them this far that He will continue to provide for them if my husband and I are not here. Another thing I am greatly concerned about is if the establishment will allow me to get medical help for my children as this new system comes more and more into play. I had to fight like a dog, beg, plead, reseach and still could not make them give one of my children a life saving surgery and this was under the old system. It is getting harder and harder to get the life giving/changing services these kids need. They pushed this surgery off as far as they could. He lost 20 pounds and was very weak by the time they decided to do it. Praise God he survived. But they made him wait 8 months for it. I see my children's lives often not valued as they should be by others and It makes me sad. If my daughter could not have to have so many very serious open heart surgeries I would be glad for healing to come to her. If my son could not be slowly loosing his ability to protect his airway and actually move his own body and walk...I would be so happy for him. If my children diagnosed with autism all of a sudden were able to have a "normal" future and get married, hold a job and have children...I would be over joyed for the easier path that would be, then what lays ahead for them. I love them all dearly. No one can tell me I would want a more "typical" child as we have chosen these children and my husband and I love our children enough and just the way they are, to have committed to adopt them and care for them as long as we are alive. And every parent I have met...EVERY...parent I have met at all the hospitals and therapy places over the years love their children enough to make that same commitment. Each one is fighting tooth and nail for those kids rights. To get them the equipment and therapy they need to bring them to their fullest potential. It is hugs and kisses and strong forever commitment. Just like I see in you Julie. You and your husband are strong. You love your boys enough to share about them in your blog. You share the good the bad and the ugly because that is reality. But love oozes off the pages. As I see a picture of Alan laying back on you relaxing and hear of his days I see a mother and fathers love and commitment. When I see you advocating for a job for Joe...a specific job that you think he can do well at and have some enjoyment doing...I see you wanting him to be the best he can be. Hugs again to you and your family. Keep doing what your doing. God see every part of your heart and there is no doubt you love your boys.
ReplyDeleteJulie,
ReplyDeleteI'm with you on this one !!!! And to Anonymous....to compare my son's autism to being gay is totally absurb. Someone gayness can be filled with joy and love and fun and all the things we all do everyday. Being severly autistic is in ways a prison for the child. Not being able to handle so much of the world and spending so much time upset and crying is not a way to live a life full of joy and love and fun. Not being able to express anything or have people understand what is wrong must be such a lonely feeling. I think when people complain about accepting autism they are thinking of the higher functioning people out there that just seem a little quirky. I'm all for "accepting" them. But, people forget that there is a whole other world that those with severe autsim live in. I would like anyone who wants to just "accept" it to come and live with my son for one week and see if they still think my son or his family should just "accept" it then??
Thank you so much Debbie, Susan and Angela for your kind thoughts and ideas. I totally agree, Angela, that most people that push the "acceptance" attitude are thinking about higher functioning. I can't imagine anyone with all the sensory issues our boys have wanting to just accept that. Ah well ...
ReplyDeletePreach it sister!!!!!! I wish you lived closer cuz we would have such great conversations. It is so suer healthy and good to voice your feelings. This is the real deal and many of us have felt this way. Thank you for putting it into words for us, i need to feature you on my blog pronto. I have never met you in person but love you to pieces right now!!!
ReplyDeleteHa ha! We are "soul sisters", Nellie, that is for sure -- which of course would make our boys cousins! lol Someday I'll get to NY and meet you!
DeleteThere are days that I don't want to be autistic. Being smart is a good thing, but no one understands me when I use excessively long words like "ephemeral" or "animosity" in an everyday conversation.
ReplyDeleteDang, I know animosity, but I had to look up ephemeral! Still, I get what you mean. Sometimes being too smart IS very isolating.
DeleteI understand... my daughter is five years but functions as a three year old. Her peers are heading to kindergarten this fall and my girl isn't ready for it. I chose to homeschool and am judged for not putting her in a school. I didn't ask for this road but it's the path I have to walk. I will embrace it as best I can!
ReplyDelete