For a while I was a mother, the way other mothers are.
For nine and a half years. I remember it.
I remember watching Jonah sleep, changing his diapers, helping him get ready for school, taking him to the park and home for dinner. There were birthday parties here with family gatherings in our finished basement. We played in the baby pool and Andy took us sledding. I also remember how hard it was, how fucking frightening and relentlessly backbreaking our days became toward the end – and I sit here grateful for the stillness in which to type these words, I do.
But at the same time I feel a vicious, raging kind of helpless. When I get home from visiting my son, I’m angry. I want to scream and moan and rave. I slam my vacuum around the house, cleaning things just to feel some control over my environment.
There are things to say but I don’t want to say them, so I stay off the blog. I don’t have any funny or engaging stories. And when I read over these blog entries I make myself sick with all the whining and the wretchedness. I wish I had better news, some anecdote to share. I only have what I have, and I can only feel how it feels.
Things were looking pretty good on October 1 – they made Jonah Student of the Month, even, and his name and photo were on display in the front of the school. I took a picture of the display case when I visited on Open House day, but I can’t find it now. The school sent a certificate and a letter about how well he had been doing. It was all really encouraging and cool.
They forgot to knock on wood when they said it, though, because it’s been all downhill from there.
Our visits with Jonah are worse. I used to complain – recently, even – when he’d come running into Andy’s apartment and then just stand in front of the refrigerator, asking for whatever he felt like eating and scarfing it down before next asking for car ride. Now car ride is all there is, and by that I mean we pick Jonah up at his residence and he says “no apahmen” and “no lunch” – and while my mom waits behind with whatever food she’s brought us for lunch, we drive the same loop over and over.
The best we can do to facilitate some sort of visit with my mother is to stop back at the apartment after every loop and try to bribe Boo to come inside. Not bath nor Burger King is temptation enough – and forcing him would mean a huge aggression episode the likes of which none of us are willing to cause or endure. And so we pause in the driveway and my mother comes out. Sometimes Jonah will put the window down and we will prompt him to wave or say “Hi, Grandma” or parrot back whatever script we want my mother to hear. Wish she could hear. Thank you, grandma. Thank you for ritually packing us all fresh sandwiches, chips and drinks every week. Thank you for picking up mama to drive an hour and a half each way to sit in an empty apartment, visiting with me through a car window for a minute or two, because you love me so much you’ll do whatever you have to just to see me, hoping I’ll be happy or will want a kiss.
On Thanksgiving, Andy drove Jonah up to my mom’s house, just like he’s done every year for the past 6 Thanksgivings since Jonah’s been at Anderson. Always Jonah loves grandma’s house. He jumps out of the car and runs in, bursting through the door to pace around and survey his surroundings.
But not this year. Even after that long car ride up here, he wouldn’t get out of the car. My father arrived just as I was getting into Andy’s car to take Jonah for a ride to see train. We called out the window that we’d be back, and my dad went inside to wait for us. Jonah smiled, a big smile, when two trains came by, once we got to the Voorheesville tracks – but when we drove back to the house, Jonah still refused to come inside. No grandma. More car ride. Awkwardly we all stood in the driveway, my father, my mother, and me – speaking to Jonah in turns and making sure Andy had all his Thanksgiving food my mother had prepared in Tupperware containers.
Andy and Jonah drove away, and my parents and I went back inside. My mother and father tried valiantly to keep some conversation and normalcy in the day, but I just sat there silent and crying, the tears coming against my will, hot and unchecked. After just a short while I apologized and told them I couldn’t do it, I had to leave. I drove home to eat my own portion of yummy Thanksgiving food and then, exhausted and sad, crawled into bed.
My mom and I didn’t drive down to see Boo again until today. Again, Jonah just wanted car ride – only this time he got really sad and started crying as well – huge, gasping sobs. I turned in my seat, gave him a clean blue t-shirt rag for his face, and held his hand in mine. He didn’t resist. He felt along the length of my hand with both of his, grasping my fingers, crying in earnest.
I asked him to tell me what was wrong. I asked him several times, in all different ways, hoping he’d offer a clue. Was he in pain? He never tells us when he is hurting, but he’d just had yet another laser operation a few days ago, to alleviate the pressure in his left eye. It shouldn’t be hurting him today. And he seemed fine when he first came out of his residence on the campus.
And so he wept, and I just held his hand. Andy played some of his favorite music, and eventually Jonah calmed down enough to gently push my hand away and request Tom Pah-dee (Tom Petty), Public Enemy, and Prince, in that order.
After three trips and visits back to the apartment where grandma came out and said hello, I finally got out of the car, kissed Boo, and waved goodbye. My mom and I drove home, mostly in silence, feeling how completely surreal can fill a car like heavy smoke.
What more can be taken away? Even as I ask myself the question I hear the answer. What if, one day, Jonah refuses to leave his residence for our visit? What then? They don’t allow visiting in the houses. There’s a visitor’s center on campus with mock apartment set-ups that seem really nice – but Jonah’s never wanted to go there. We tried it once and it was a disaster. And anyway, even when he was going to the park or down to the dock, he still wanted his car ride and to get off campus first. Can we visit him on one of the campus playgrounds?
Tomorrow I talk to the school district about the possibility of Jonah attending the Kennedy Krieger Institute for their short-term impatient program. And I probably will call Jonah’s caseworker, too, about how home visits have been deteriorating.
Maybe they will have some ideas. Me, I’m fresh out. And done writing about it, for now. If I do not post again before Christmas, I wish you all happy and blessed holidays, filled with joy and hope.
Amy my thoughts are with you and Andy. I pray and hope for better days so you both can have the good times to get you through the tough times. Merry Christmas to you and Jonah and Andy.
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Hi Kate. It’s nice to hear from you – it’s been so long. I will tell Andy you popped in and I appreciate your kind words! I hope you and your family are all doing well.
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My heart is heavy reading this. I’m so sorry. I wish I could do something magical to help. It does seem like something needs to change and he could be depressed. Try not to lose hope even though it’s very easy to.
My boys and I will be going through some big changes in February. I had a heart attack last September and I can allow longer keep this up on my own so we’re going to get the boys in an apartment and try to find staff which is a big problem. My thoughts and heart and prayers go out to you. Please keep in touch. XOXO 😘 😘🙏🏽💞
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Amy. As I read this I cry with tears of helplessness for you, Andy, your parents, and most of all for Jonah. Who knows what goes through their minds? The anguish and torment he must feel internally and the only way he can communicate is to become aggressive. I wish there was some way I could help all of you and him. I can only lend my prayers and support to all of you.
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Oh, Amy! Words are so inadequate in the face of such sadness. The only one worthy to be spoken or typed is love. And I’m sending LOVE to you. Please let us know how the possibility of Jonah’s attending the Kennedy Krieger Institute progresses.
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Hello, Amy.
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Amy, I am so sorry. I had no idea the hell you are going through. Your Mom keeps everything bottled up so we dont hear these things. No words i can say would express the heart ache i have for you, your mom and Andy . Please know your in my prayers and hope for a cure or drug to treat poor Jonah . Try your best to stay strong and know you are loved and missed and if you need a ear i have two !
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Thank you. It’s not hell, not like it used to be. It’s just endlessly frustrating and my mom doesn’t want to talk about it – she hates that I write this blog! I love you guys and appreciate the prayers and hope.
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So sorry Amy. My only words of comfort are that my son is acting the same exact way at home now. Will barely come in the house. All he wants is car ride after car ride and my legs are literally cramping and shaking at the end of the day when my husband does the hour long drive back to his residence. We are at a loss. *hugs to you*
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Thanks Linda. Sometimes it’s good just to feel that you’re not all alone in something. But what the hell?! Hugging you back…
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M heart goes out to you and your son. But I want to give you some encouragement, my son was severely aggressive to the point any unexpected noise, if my husband and I argued, loud boisterous sit-coms/movies on TV, unexpected laughter of children he’d pinch and pull hair. He used to beat me up and I’m in my early 50s. Fast forward a year later he has completely changed. Not perfect because he still can become aggressive if my husband and I have an argument but his aggression the severe kind has stopped. He’s now able to communicate using his speech device. He respects me and my husband’s able to travel without having to worry about our son beating me up and breaking things in the house.
I thought I’d never ever ever see the day I would not be afraid to be alone with my son. He’s thirteen and a big boy.
Don’t give up hope. And you are doing the right thing considering the NBU at Kennedy Kreiger. We considered it to but then they got him on the right combo of anxiety Meds. We take our son there twice a year for check-ups. They got him the Meds and that helped immensely.
I’m sending you positive vibes that your son also gets the help he needs. Kennedy Kreiger changed our lives along with the school he attends for autistic children with severe behaviors. He has an awesome teacher that is really getting through to him.
I read your blogs and I feel for you because I was also that mother with a child so severely aggressive I couldn’t live life. It’s not totally perfect but we can breath now and do outings and I’m no longer beat up on.
Hugs and take care. I wish your son and you the very best.
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There’s nothing I can think of to say that’s not a platitude. This is a difficult time of year at the best of times; my heart breaks reading this and I send you all my love – I will also be sending lots of music, as promised and as I used to, because music always helps, even if only momentarily.
I send you much love and hope xx
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I just want to suggest that some behaviors can be phases rather than trajectories. Hormones are kicking in, he’s ambushed by unfamiliar feelings and emotions. These recent behaviors are not necessarily deteriorations; they could take new turns at any moment — both ups and downs.
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Thank you. I realize this. It’s just that, overall, the trajectory has been a downward spiral with brief periods of ups.
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I am so sorry, Amy. I guess this is the benefit of my having been raised without any traditions. We didn’t do anything for Thanksgiving. Just late at night, we went to McDonalds, so our daughter could watch and perseverate on the stoplights that she could see through the windows. McDonalds was full of Black Friday shoppers so it was like a big old party in there. As long as there are stoplights, she is good. By the way, our family is taking part in the largest autism research study yet, in case you are interested. You can sign up at sparkforautism.org. We just did our saliva sample collection yesterday and we are shipping them today. Not only does it further research efforts, it also gives us information on our own genetics for free.
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Thank you; I will sign up for the research study. And it’s not the traditions I miss so much as Jonah not getting out of the car *at all.*
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