Sometimes when I don’t blog for a while it’s because of a superstitious belief: because everything is going well with Boo, I mustn’t write about it because it will break the streak of good, of happy, of laughter and kisses and hugs and learning.
Of course it is just superstition, but when you’re in my position you will cave to anything that works, or seems to work. And that’s not the only reason anyway. Without giving too much information about me, I had a hard February. The kind of hard where I called a new psychiatrist for counseling and to adjust my meds and I called my OBGYN to figure out what the hell kind of hormonal changes are happening to me at the age of 44 1/2 to make me suicidal one day and joyful the next. Menopause? I already have osteoporosis and arthritis so why the hell not.
This will not do.
And so in the meantime I meditate and I pray and I work and I try to get outside – it’s so easy to hibernate most days when it is so damn cold and I work from home. Some weeks the only time I go outside at all is to go visit Boo.
I didn’t even go to the advocacy thing I spoke about in my last post. I was about as depressed as I get that day accompanied by a migraine that slammed me down into puking and crying. Weakness. My mind and my body betray me all the time, just when I’m ramped up to DO SOMETHING about all the low-functioning kids and their situations, just like mine before we were able to place Jonah at the Anderson Center for Autism.
And so for the first time in a month – Two months? – his school called me on Monday AND Tuesday to tell me that Jonah had gotten aggressive to the point that he needed “a two-person take-down” — meaning they’d had to subdue him physically. Of course they know how to do it without harming the child, but someone always gets hurt in the process – usually a teacher or caregiver. I suppose that’s better than another child, at least.
When I wrote to his room head teacher she told me she thinks it was because she was out sick on Monday, and on Tuesday there was a new child in the classroom. Jonah does not do well at all with change. Yet sometimes, as has happened many times in the past, there is no antecedent at all and we are left to wonder what the hell made him “flip out” for no reason we can discern.
It bursts my bubble again and again, and the longer Boo goes doing really well between aggressions, the bubble bursting hurts all the more. Then again when I compare it to 3 years ago or so, I have to remind myself that it used to be 8-12 aggressions a DAY. So I get out my trusty old bubble wand, blow some more bubbles, and hope.
He has been happy when my mom and I visit on Saturdays, dancing and singing and eating his lunch, taking his bath, requesting his Oompa Oompa, shrieking with joy, asking for car rides. It’s our routine and he enjoys it.
Then I found a group on Facebook, thanks to an online friend, for people dealing with children who have “classic autism/severe autism.” I expected the usual – a bunch of people arguing about diets and treatments and drugs, parents insisting “if you just do this you can cure your child of autism,” etc. I was never so wrong in my life. It was a light of love that I found — a place where you can say what is happening to you and your child without fear of judgement or blame. A place where everyone affirms one another, cheers for the accomplishments and offers empathy for the disasters. It is the best place with the best people I have ever found since Jonah was diagnosed, and I wish I’d found it long ago.
Because Asperger’s ain’t what we’re dealing with and yet that’s all anyone talks about in other groups, it always seems. Parents bragging about their accomplishments, lifting their child(ren) out and away from the autism and into social groups and “regular” schools and how they take their child everywhere with them; that’s why their kids are doing so much better, don’t we see that?
I hate that shit. I could never take Jonah anywhere with me (in public) since the time he was a little baby, without facing stares and glares and the whole rest of it – my screaming, crying, unhappy Boo hating the car seat carrier, unable to participate in the little “music and movement” classes I’d enrolled us in before he was diagnosed. Then, later, attacking random people in the mall, at the “family” restaurant, at parks and playgrounds. And always the ugly glances, always the eyes boring into mine, the message loud and clear: God what a bad parent she must be. What a brat she’s got….until I prayed for winter to give us the perfect excuse to hibernate inside.
This new group is a cyber-world where I cry for others’ children and they cry for mine. Where we offer each other suggestions and support but not any of that “I’m right and you’re wrong” bullshit. Where we read one another’s stories, watch heartbreaking or joyful snippets of video, share blog posts, hugs, prayers, ideas, and love. Where no one has to feel alone, or persecuted, or guilty.
I am so grateful to have found them, my fellow aliens on this planet of normalcy, so many of them suffering worse than I ever did, with other children to protect and deal with, often more than one on the spectrum, sometimes facing heart operations or other serious medical problems on top of all the other stresses. God bless them all. I don’t know how they do it but I do know how they do it — because life isn’t offering any of them a choice — you do it because you love your child(ren) beyond reason and would do anything to help them when they are suffering.
And so now I am no longer alone in this, not at all, not ever.
Yesterday when my mom and I visited, Jonah was happier than ever. Laughing, giggling, smiling, lovey. He pointed to the computer and asked for train and I put on an hour long video from YouTube with endless trains coming and going, coming and going, made by some rail fanner adult. Boo sat mesmerized, first on my lap and then alone in the computer chair, alternately single-mindedly catching the visuals of the movement of the trains with a dumbstruck look on his face and smiling at the approach or departure of the train. “Bye bye train!” I say, every time a train rounds a corner and disappears, only to be replaced with another approaching train. Boo smiles, giggles, eagerly anticipating the next train. Over and over. Train after train. When I had him on my lap I breathed him in at the back of his neck, gave him little mama kisses all over his shoulders, rubbed his back, whispered “mama loves you so much” into his ears. I drink him up every time I see him like this.
And, on his car ride, as happy as the song playing on the radio: Happy by Pharrell Williams.
My mom and I left in a satisfied state of happy ourselves, both of us saying “thank God” as we get into the car to drive away from Andy’s apartment, where he and Jonah will have “quiet time” in the big blue bed, just lying together, and sometimes Jonah will take a nap.
Then, later, the daily phone call from Andy, always around 8:08pm, always just after he has called Jonah’s residence house to see how Jonah did that evening – on Saturdays, particularly, after Andy has dropped him back off. The news wasn’t good this day. Always Jonah cries a little and maybe tantrums as he is being brought back to his residence. He likes his residence and has his favorite people there but still leaving daddy behind is hard for him.
This night his favorite staff members were not there, and he was angry, and did not want his dinner. They have other foods to offer the kids and he asked for a bagel. I want bagel please? he kept asking, over and over even after he’d been given one. His voice gets more desperate and he cycles through a million things. Bath? Car ride? Train? Bagel? Bagel? Bagel? and he ramps up even more, torn between a mysterious desperation and an OCD-like anger and sadness.
Eventually he went into his room and was quiet for a while. Then one caregiver heard banging and crashing, and when she went into his room he was kicking the walls and throwing items around, frenzied with the sadness/anger again. When she gently asked him what was wrong he flung himself at her, attacking her, and eventually needing 3 people to get him under control. Another bubble burst.
God forgive me but I am grateful I don’t have to see it, to be the one attacked anymore, to have the freedom of being removed from it all, physically if not emotionally.
I have gone from this scratched-up, bruised, beaten down person
to this person
in three years.
I can’t believe the difference.
And Jonah has gone from this child:
to this one:
I have to remember that despite the setbacks, in general we are both so much better, so happier.
And if I am upset or confused or angry or sad, I know I now can reach out to my new peeps online in the Facebook group, and there will be understanding, there will be light.
I will try to post more often, superstition be damned…
Amy…not sure what to say because I can overwhelmingly relate to ALL of this. Thank you for this blog entry. I’ve been going through so many different emotions lately regarding my son.
LikeLike
I’m so grateful that you found your on-line group of supportive, non-judgemental people whose moccasins are walking the same path as yours. Getting and giving support from these folks will bless you more than the love and support of those of us who love you but tread a different path.
LikeLike
You are looking darn good. You could join a bowling league, get one of those very-cool bowling team shirts, put your name on it: Hot Stuff.
LikeLike
Those other autism parents, the ones you no longer interact with, likely found some sort of medication/therapy/intervention that helped their kid — as a result, their kid was able to better manage their symptoms and thus happily accompany their parents to the grocery store, attend school, etc. These autistic kids still live at home with their parents.
Clearly, it is possible to teach a kid with autism to behave like a civilized human being. You know, if their parents can be bothered to do so.
You can’t. You’ve institutionalized the little boy you claim to love. Because love is totally spending maybe an hour week with your beloved son.
I’m starting to see why you choose not to participate in groups where other parents have seen a modicum of progress with their autistic kids. It’s just too depressing to see where your boy could be had you tried the teensiest big harder.
LikeLike
The teeniest bit harder? Sandra Dee, did you even bother to read ANY of my blog besides this post? My husband and I tried EVERYTHING before making the most agonizing decision of our lives. Jonah was endangering his own life as well as others’. Walk a mile in my moccasins and then come tell me “it’s too depressing to see where your boy could be had I tried the teeniest bit harder.” And thank you for the cruel and cutting post. I open my whole life up for the blog community and risk comments like yours EVERY DAY so that one other family of a child with severe autism will not feel alone. And Jonah has come further in his residential setting than he ever would have been able to with us. Call me weak, unloving, whatever. You have NO IDEA what we have been through. How DARE you tell me I couldn’t be bothered to “teach my kid with autism to behave like a civilized human being”? You should be ashamed of yourself, judging me. I feel sorry for you.
LikeLike
“Sandra Dee” – You are a cruel and heartless person. Why would you post such a comment?
LikeLike
Sandra Dee, you are a very sad sad woman. I can clearly see it. You are so unhappy with your own life, and are so quick to judge others. Every single kid with autism is completely different, and classic autism rated severe is a whole another kind of animal compared to that of aspergers. I really doubt you could even handle one day with a beautiful child that is considered low functioning. You are a lousy human being. You read one blog from this wonderful lady and come up with this poorly though out paragraph? You are the one who should be completely ashamed of yourself.
LikeLike
“Shame on you Sandra Dee” would be the understatement of the century. If you are not going to be supportive and kind, please leave this lady alone and go back to your perfect little life. You are heartless and are the opposite of this wonderful and brave lady
LikeLike
To imply that she doesn’t love him is so silly. Are you really that simple minded Sandra Dee? So, all these kids in placement is because someone stopped loving, or gave up on them? Wow. Perhaps it was done because she loved him so much. Did that ever occur to you in the slightest? You shouldn’t be so judgmental of others. There are forces in the universe and laws of karma, whether you believe in them or not. You cannot go around with that much hate and judgment in your heart. What if you are older and have an onset of Alzheimer’s? If your family places you in a home that has medical staff that can take care of you better, your family must not love you right? C’mon, wake up. Stop trolling innocent people, go take a walk, be of service to others, pay it forward. And maybe this lady avoids certain autism groups because of shitty people like you? I know I would.
LikeLike
Sandra, Amy is a mother who tried everything known to the autism-spectrum world before tearing her heart in two to place Jonah in a residential school. You can go back a few years into her blog to read about the day Jonah was rushed to the ER by ambulance with two severely bleeding legs after kicking out the window in his bedroom. You can read about the day Jonah, totally unprovoked, attacked a three-year-old in a mall. You can read about the day he and Amy were home alone when he attacked her, knocking her backward from the edge of the bathtub into the tiled wall. Luckily, she did not lose consciousness, or Jonah may have run outside to be hit by a car or suffer any number of unthinkable things.
Jonah does not have Asperger’s Syndrome, the mildest form of autism on the spectrum. Asperger’s kids benefit from many forms of intervention outside of residential treatment. Amy’s son suffers from severe autism and exhibits severe aggression. Jonah was in an excellent day school whose teachers finally recommended a residential school for him. Both Amy and Jonah’s dad love their son with all their hearts, both of which were broken the day they left the son they love, the son whose violence could not be mitigated by their love and devotion, in the care of those trained to deal with severely autistic, violent kids.
Someday, Sandra, you and others who are quick to rush to judgement will heal your own wounds which impel the vile treatment of others whose path you’ve never trod that you’ve displayed toward Amy. I hope your healing happens soon. The world will be a better place when it does.
LikeLike
Whoa! Amy and others here. Deep breath. Sandra Dee (silly alias) is not someone to reply to or even to give a first, let alone a second thought. She is a TROLL. A person who gets perverse pleasure from saying outrageous, hurtful, cruel, ignorant things to complete strangers while hiding behind a
wall of anonymity.
These people are often sad and somewhat unhinged — imagine having nothing better to do than write such things. Unfortunately, they live for your distressed response which lets them know they have gotten attention.
It’s an interesting psychological truth, that, as in this instance, one jackass comment among so many comments of support, encouragement, praise and affirmation, can do so much emotional damage. It hardly seems fair, but that is how our minds work — probably has to do with sensing danger, so not totally irrational.
So people like SD get hooked on trawling around blogs and other sorts of posts and saying vicious things. I don’t know how to block or delete a comment, but you can ask the admin. about that and report her for harassment.
That’s what it is Amy, harassment. Don’t reply to it. The worst thing you can do from her vantage point is ignore her. I know that is easier said than done. You owe her no explanation, no response at all. Just silence.
I hope others will join me here in calling a troll a troll.
LikeLike
Wonderful understanding of internet-trollism and great advice.
LikeLike
Everyone, thanks so much for the overwhelming support. And thanks, Art & History. I never truly understood what trolling meant until now. From now on I will just delete these comments when they come in.
LikeLike
True companions for the journey make such a difference.
LikeLike
Amy I am so happy that you found this group and for the stories and support you all share. Your photos tell so much about your journey. Superstition be damned indeed for we need you to tell the story of your Boo. For those of us who have never met him or who do not have personal experience with autism, your blog helps me to learn and hopefully helps me to be more compassionate. I wish we had more time other than those twice a year hygiene appointments to share our stories. You and Jonah, as always, are in my prayers.
LikeLike
Amy, would you mind emailing me the group name? My daughter is very similar to Jonah. Thank you.
LikeLike
Low functioning/classic/severe Autism support and laughter. You are more than welcome!
LikeLike
If I could send a virtual taco punch to someone, Sandra Dee would be the lucky recipient!!
What an ignorant fool…
Pretty easy to sit behind a computer screen and judge someone isn’t it?
LikeLike
Sandra Dee,
Very brave of you to spew your filth under fake names and false email accounts. You are a thoroughly vile ‘person’ and cosmic law dictates that your hatred be returned to you threefold. I personally would love to see it. Bitch.
LikeLike
Hey “Sandra Dee”…go fuck yourself you fucking piece of shit. You aren’t even brave enough to use your real fucking name you assclown! My name is Kristin and Amy is my dear friend. I HAVE BEEN THERE EVERY STEP OF THE WAY through her agonizing path, decision and journey. You don’t even KNOW Amy and further more if you did, then shame on you because you are fucking clueless, cruel and a coward. Eat shit and die. I don’t care if you think this is “low class” of me to be slinging swear words and hateful tid bits because you and your fucked up opinions matter not to me one bit. You are probably so pleased with yourself by stirring the pot and people giving you all of this attention and feedback. You are an ignorant asshole with no life who probably thrives off of drama and everyone saying “poor you” because your kid is touched. You probably love all the sympathy, attention and pity you get from your disabled child. AGAIN, DO US ALL A FAVOR AND PLEASE GO FUCK YOURSELF YOU FUCKING LOSER. I’m just saying what all the politically correct people on this blog are thinking and feeling.
LikeLike
Actually, Kristin, my thoughts and feelings about the vile comments of “Sandra Dee” were not expressed in your response to her. As I said in my response to “Sandra,” I believe that she spewed her hatefulness over Amy because of her own wounds. I responded to “Sandra” as I did not because of my political correctness but because of my conviction that the darkness of hate is only dispelled with the light of understanding and not with more hate.
LikeLike
Amy,
I’m so glad you wrote this post. I have been checking in regularly and missing getting to read your words. I’m also glad your last visit with your son went so well. I loved you describing smelling his neck, isn’t that the best spot?
Once a few years ago a friend of mind said I had an “etcha sketch” mindset. ie: I may be feeling good about myself, (or my life, or a project,etc) but just let one person say something negative and I mentally “shook my etcha sketch”, effectively erasing all the good because of the one bad input. Screw the one bad comment, Sunshine, your heart is good and you’re obviously a good mother.
LikeLike
In response to the comment Sandra Dee left, you should never judge a parent of a child with Autism or claim that you know how well the child would excel. I’m a mother of a 20 yr old son who lives with Severe Autism and for you to say they can be taught to ~”behave”~ Really?! First and foremost I’m not sure what level of Autism you’re aware of but for my son it’s not something that can be taught, Situations that are too much for him will bring about behaviors, not that my son intends to or even realizes he’s not acting correctly, he’s just trying to find a way to deal with the over stimuli and therefore a lot of his behaviors are a dealing mechanism. Sometimes it takes inpatient care especially if the SIB gets to the level that the child is endangering himself and others to the point that it is no longer safe. It seems to me that instead of you judging this parent you should be educating yourself on Classic Autism because clearly by reading your comment you are clueless, Don’t Judge what you don’t know!
LikeLike
Sandra Demon:
I know Amy personally and I support her decisions. I don’t think that there is a more loving or caring as well as intelligent person on this earth. I’m not sure if you have an autistic child or not but I certainly hope not. Doping the child is not the answer in every situation. How do you know whether or not Jonah reacted badly to medications or perhaps some caused seizures? You don’t. You’re just quick to judge as with most uneducated and unimformed people. It was about a quality of life for Jonah…not for Amy. She loves him first and ALWAYS thinks of him first. Clearly, you don’t think at all. Now to lower myself to your level…stupid bitch!
LikeLike
No response to SD, Amy just want to say how delighted I am that you found an online group where you can share your amazing strength and yes even your breakdowns with others that are walking a similiar journey, If anyone needs support it is you, although I believe you are one of the most open, loving, caring and strong people I have ever had the pleasure of counting among my blogging friends. If asked what famous person I would like to have dinner with…it would be you…or you are famous in my eyes for the sheer strength and courage you show every day in your love and care for Jonah. God bless you my friend, keep writing we all love you and Jonah so much and we are here for you! {{{Hugs}}}
LikeLike
i wish i wear it to i have one to
LikeLike