February 28, 2011
Pictures, like songs, have the ability to bring out memories that are buried down deep.
I’ve been thinking a lot about that lately – those memories hidden away – after reading MOM-NOS’ great post about ASD (autism spectrum disorder) and PTSD (post-traumatic stress disorder). If you haven’t read it yet, you should. It’s here. And here. And probably about 800 other places at this point. It’s that good.
While thinking about that post, I wondered about my own moment of trauma. The one I live over and over again, but have never shared.
This isn’t a B Side post, because while it’s a memory, it’s not a good one. It’s not entirely an autism post either. I guess it’s more of a “me” post. And since I use my blog as free therapy for me, I suppose I’m entitled to a “me” post every once in a while.
note: I know members of my family read this blog. I’m giving you warning now that you might not want to read this, and if you do, I won’t want to talk about it later. Because I’m writing about it here instead.
Last week of August, 1997: I’m with my family at the annual summer fair in Vermont. Going to the fair together has been a tradition since I was little, and we always had our family “portrait” taken there. This year, I resisted going. It wasn’t because I was ashamed to be seen with my family – I was 25 years old and past all that. But I was busy. I was working in college admissions and we were getting ready for the new school year to start. I had things to do. But my parents were insisting that I go. Begging, really. So here we are at Scotty’s photo booth. And we take our picture:
It’s our last one.
This will be one of the last times I go to the fair. I’ve been a handful of times since this day, and never since I’ve had kids.
August 31, 1997: It’s one o’clock in the morning and I’m sitting in my apartment in my bed watching the news. They are reporting that Princess Diana has died in a car crash. The phone rings and it’s one of my best friends from college. She’s calling to talk about the breaking news of the day and share the conspiracy theories already swirling all over the world.
I share with her my breaking news. That afternoon, my parents sat me down to tell me that my father had cancer. Pancreatic cancer. I was awake watching the news because I was afraid to go to sleep. My friend, in her first year of medical school, fell silent on the other end of the phone. She knew what that meant. A five percent survival rate. Months of chemotherapy and other experimental drugs on the horizon. A life changing moment. We hung up and I stayed awake for hours.
I still cannot watch footage of Princess Diana’s car crash without thinking of that night. For months after, I would leave SportsCenter on while I fell asleep so I wouldn’t have to be alone with my thoughts.
November 12, 1998: I’m sitting in my parents’ bedroom with my father. We know he doesn’t have much time left. We’ve given up on hospital stays and he’s come home to be surrounded by family. The spreadsheet that I created to track his medications has long been pushed aside since we’re only focused on pain management now. A week prior, he had won re-election to his third time in the Vermont Legislature. I wrote all his campaign material and answered all the candidate surveys. My whole family is at the house. My brother had come home from graduate school to celebrate an early Chanukah, since none of us knew if my dad would be around in December. He had started the journey back to school on this day, but turned around when my sister’s guinea pig “Ham” died in the afternoon. He came back to help bury it in the pet burial ground we had on our property. And now, my brother sat downstairs with my mother and sister having dinner, while I stayed upstairs with my dad.
I am eating Macaroni and Cheese. We’re watching “Must See TV”. “Friends” is on. My dad is sitting across the room from me in his green recliner. It’s where he chose to be during the times when he could no longer stand being in bed.
“I’m sorry (your sister’s) guinea pig died.”
The voice came from the chair. Strong and clear. The first coherent sentence I had heard from him in a long time.
“I know, Dad. I’ll tell her.”
Then, a few moments later, the seizures start.
I yell “Dad! DAD!”, and then “MOM!! MOM!!”. I didn’t need to call her name. The baby monitor that my mom had on was already sharing what was happening.
I yell to her to call my uncle who lives next door. I dial 911.
I forget in this moment that 911 had not come to our rural part of the state yet. The time it takes for the operator to connect me to our local dispatch seems like hours.
I don’t need to give them our address. Just our name. My father had been on our town’s rescue squad for many years. They knew where we were.
My mom and uncle usher me out of the room. The ambulance arrives, knocking down the baby gate at the bottom of the stairs that was there to keep the dogs from getting up to my dad. They take him away. My mom, brother and uncle follow. I stay home with my sister.
The call came from the hospital a couple of hours later. My dad was gone. “ER” was still on the TV upstairs.
It’s a year before I can watch “Friends” or “ER” again.
The green recliner is now at my house, and is my middle son’s special chair. When the demons of his autism rise up, this is where he retreats. He rocks there. He curls up in the seat of the chair and feels safe. It is his “green chair”.
I go over those last moments over and over again for the next 12 years. Was there something I could have done differently? Why I was the one in the room with him at that moment? What else could have have said to him before I lost the chance to say anything more?
February 17, 2011: A giant package arrives in the mail addressed to me. I open it and find about 50 pictures inside, sent to me by my cousin. She was helping my 89-year-old Grandma move into a smaller place and thought I’d be a good “manager” of these photos. I’m waiting for the kids to get home from school, so I have a moment to look through the pictures. The first one I pull out is this one:
And all the memories come rushing back.
This day would have been my father’s 64th birthday.
February 27, 2011: I start this blog post and the healing process. For the first time, I can write about these memories, although I’m not sure I’m ready to talk about them yet. When I look at that photo I see uncertainty in some faces and blissful ignorance in others. My parents know life is about to change. I do not.
That picture made me think about the family I have now and the life-changing event of my son’s autism diagnosis. I wondered if there was a photo of us before our world changed forever. I searched and searched and found this:
It was our holiday card for 2009. This was taken three months before our son’s diagnosis. As parents, we knew something was going on. Our kids had no clue.
Two life altering events for me. And the photos that trigger the memories.
I chose the Harry Chapin song “I Wonder What Would Happen To This World” for a reason. Harry Chapin was one of my father’s favorite singer/songwriters. In July 1981 we were overseas on vacation when he read the news of Harry Chapin’s death. I was young, so the memory is fuzzy, but I remember thinking this was one of the first times I had seen my father sad. The lyrics below from this song are on Harry Chapin’s headstone. I often think how different life would be for me now had the two events above not happened – if my father was still alive and if my son did not have autism. While writing this post, I have realized that it’s useless to think that way. What’s most important is how we take what is given to us and use it to change our corner of the world. To let go of the past trauma and stay in the present. And with that, I hope I can finally move on.
“Now if a man tried
To take his time on Earth
And prove before he died
What one man’s life could be worth
Well I wonder what would happen to this world” – I Wonder What Would Happen To This World by Harry Chapin
February 21, 2011
Every once in a while, someone comes along that reminds you that there are still good people out there.
For me, it’s my son’s special needs van driver.
Friday was Howie’s last day on the van until his summer program starts before kindergarten. The van was starting to fill up due to additional eligible students at the elementary school. To alleviate this overcrowding issue, the district asked the preschool to reexamine which kids really needed to ride the van, and which kids could be picked up by their parents.
In following the letter of the law, Howie’s disability did not rise to the standard of needing the van for preschool. The “normal” mode of transportation for the preschool is by car, and Howie’s autism does not affect his ability to ride with me home from school, especially since I was already driving him there. So with an amended IEP assuring us that he would be back on the van for the summer program and for kindergarten (because he cannot ride the regular school bus), we agreed to drive him to and from school until the end of the school year.
This was a difficult decision for me. As I wrote in my first post for Hopeful Parents, the van was my first real public acceptance of his autism. Selfishly, it also gave me an additional 45 minutes each day to myself. Lewis would nap in the afternoon and I could have that time to write, make phone calls or catch up on Glee while I waited for the van to bring Howie home.
And Howie loves riding in that van…and the van driver.
So on Thursday, right before his last day, I wrote Ms. J (the van driver) this note:
I just wanted to take a moment to thank you for everything you’ve done for Howie this year on the van. As you know, Friday will be his last day riding with you until he starts his program for kindergarten. I have yet to tell him, because I know how sad he is going to be.
I know I said this to you at Christmastime, but I wanted to formally tell you what an important part of Howie’s school life you have been this year. We see you as an extension of his school day, as one of his teachers. Your use of “red” and “green” choices on the van is consistent with the words he hears in the classroom, and that continuity is so important for him. He has learned incredible social skills while riding with you as he interacts with you and his peers. When he gets home, I hear about Fred the Horse and how salt melts the ice on the road and how many satellites he’s seen that day. All those things have come from you. The ride home with you has been a great transition from his day at school to life at home, and we will all miss seeing you every day.
I know you don’t usually do the summer van run, but I hope you will be back driving again in the fall. Seeing you pull into the driveway that first morning will help make Howie’s move to kindergarten so much easier. For me and for him, since we will all know he’s in such good hands.
I’m sending a copy of this letter to the Superintendent, the Transportation director and the head of the preschool with the hopes that they’ll put it in your personnel file. This school district is lucky to have such a caring and loving person on staff. You work with a very special population of kids and some days it can’t be easy. All I know is that you’ve made it very special for us.
Friday, when she pulled up to drop Howie off for the last time this year, she handed him a package.
“Howie! Look! Ms. J. found you a pack of Matchbox cars! One of them has a van in it JUST LIKE Ms. J’s! I got it for you!”.
If you know Howie, you know that Hot Wheels and Matchbox cars are the key to his heart. She also gave him his favorite sour apple (organic corn-free) lollipop.
His eyes? His eyes were dancing.
I thanked her and whisked Howie out of the van before I started to cry.
Inside, we opened up the pack of cars. Not only had she found a van that looked just like hers, she had taken the time to open up the box and write these words on it:
“Ms. J’s Van.” And the name of his school. And Howie’s name, with an arrow leading to his window spot.
I can’t make this stuff up:
The writing is on top. Trust me. It’s there.
Of course, Howie thought this was pretty awesome. I figured it was a good opportunity to tell him that he’d be riding home with me now and that’s why Ms. J gave him the cool van.
“Nooooooooooooooooooooo! I’m going to kick out your tires!”
Any doubt as to how he feels about that van?
It’s always the bad stories we hear – the things that can and do go wrong when our kids aren’t in our care. The stories that make us want to hold our kids close and never let them out of our sight. We always talk about the constant battles that wear us down and wonder why there isn’t someone – just one person – who can understand our child and love them for who they are.
Howie’s van driver is that person. We’re lucky that she’s one of several amazing people we’ve encountered so far.
And I wanted to talk about something good for a change.
“Tell me something good (tell me, tell me, tell me)
Tell me that you love me
Tell me something good (tell me, tell me, tell me)
Tell me that you like it, yeah” – Tell Me Something Good by Rufus and Chaka Khan
February 17, 2011
It’s the 17th of the month and I’m over at Hopeful Parents today playing TV producer. It’s my pitch for a new reality show. I think it will be bigger than “Sister Wives”. Certainly more inspirational than “Toddlers and Tiaras”.
Come check it out:
- If I Had A Hammer
Click HERE for If I Had A Hammer
February 14, 2011
It’s pretty clear from some of my last posts that I need to take a break from all things autism once again. It’s time for a B Side.
Some of you know that Tim and I have, um, different political views. He’s the Mary Matalin to my James Carville. And yes, I’m not sure which one of us finds that more insulting. So in honor of my least favorite holiday (Valentine’s Day), I bring you an interview with my most favorite man:
ME: So, when did you develop such strong political views?
TIM: I saw that you reworded that questions. Originally you started with “how did you get so wrong-headed”?
ME: I’m trying to be kind.
TIM: My opinions have always been strong. Comes from the confidence in knowing that I’m right.
ME: Does it bother you that we have different views?
TIM: No. I do find yours a bit disturbing at times. (smiling)
ME: When I was in the Vermont Legislature before we were married, you were incredibly supportive. Was that hard?
TIM: No, we were on the same side of that debate (about civil unions). I’m a social liberal. We would have had strenuous debates had you consistently voted to expand government. But I wasn’t living in Vermont, so it wouldn’t have affected me.
ME: Speaking of that, would you ever vote for me?
TIM: Yes, because you’re a good person. But it would be hard if you were supporting a platform that included the expansion of government.
ME: What do you think we’re teaching our kids about politics?
TIM: We’re not teaching them anything political. Because we don’t talk about it in front of them.
ME: We don’t?
TIM: No. Because you tell me not to.
ME: Would you consider any of my views a dealbreaker?
TIM: Of course not. You can have any wrong-headed opinions you want.
(playfully smiles at me again. The smile that made me fall for him all those years ago.)
ME: But we agree on the important stuff, right?
TIM: No. We agree on stuff that IS important. But there is a lot of important stuff, like fiscal responsibility, that we don’t agree on.
ME: Do you know that I end every political conversation with you by saying “Okay, but you’re wrong!” in my head?
TIM: Clearly you keep it in your head because you can’t defend it out loud.
ME: (laughing) Do you derive anything positive from us having opposite views?
TIM: Other than the general sense that it’s what makes you you? Do you get anything positive from it?
ME: I do. You wouldn’t be you. It would be boring to just have someone agree with you all the time. Do you frustrate me? Constantly. Aren’t you glad we’ll always have something to talk about?
TIM: We could grow old talking about how evil government is, and I’d be okay with that.
(After 15 years he really knows how to push my buttons. I love this man.)
ME: But you love me, right?
TIM: Of course. Always and forever.
There you have it. I will never change him and he’ll never change me. I wouldn’t want it any other way. Just like I wouldn’t want to live anywhere where the weather is the same everyday. Sometimes it takes a week of 10 degree weather to really appreciate it when it’s 50 degrees and sunny. I love those moments when Tim and I are on the same page politically. It isn’t often, but when it happens, it’s pretty special.
I do believe that what we do agree on are the most important things – we want our three boys to live in a safe, caring world that respects people’s differences and differing opinions. We want them growing up knowing that they are well loved by their parents. And that their parents love each other too.
Even when the other parent is so clearly wrong.
“Love and marriage, love and marriage
They go together like a horse and carriage
This I tell you brother
You can’t have one without the other” – Love and Marriage by Frank Sinatra
February 11, 2011
I’m not an angry person by nature.
I don’t get angry. I get frustrated, annoying and sometimes even a little grouchy. Okay, maybe a lot grouchy. But never angry.
I’m not sure where this new emotion is coming from. I’m guessing that some of it is weather related. But not all of it. There are days when it feels like there’s just too much to deal with. Too much to take on.
This all came flooding out while I was trying to fold a fitted sheet.
Stay with me.
I can’t fold a fitted sheet. I have never been able to do it. Tim has tried to teach me many many times. I just can’t. Maybe I don’t have the wingspan to hold the corners just right. Maybe I just don’t have the fine motor skills. Whatever the reason, I can’t do it. So for my entire adult life, fitted sheets have been crumpled up and shoved into the closet on top of all the flat sheets and pillowcases. And I quickly close the door.
The other day, I was doing just that. As I was trying to shut the door, the whole pile came out on top of me. And big, ugly, angry tears began to fall as well.
In my head, I was screaming at those balled-up sheets, so angry that they had the nerve to fall out and not stay where they were. I started to rattle off all of the other things that were making me angry.
- I’m angry that my almost five year old still won’t sleep through the night and I can’t figure out what else to do.
- I’m angry that my eight year old comes home from school and asks me at least once a week why we can’t do “x” like all his other friends do. (X= take a long family vacation, go to the movies, go to museums, play nicely together)
- I’m angry that I am constantly in the role of “police officer” in my house, and I can’t figure out if my two year old has actual behavior problems or if he’s just copying his brother.
- I’m angry that my son does better with his behavior management at school than at home, because of what that implies about my parenting skills.
- I’m angry that there are days that I just can’t help my son manage his body and his sensory issues. And I’m angry at myself for being tired of dealing with it.
- I’m angry that I have friends across town and across the globe who are fighting for their children’s rights to have basic services in our schools. Friends who just want the words in their IEPs followed and not ignored.
- I’m angry that it matters where you live – that some towns and states are really good at supporting our kids, and some don’t care.
- I’m angry that I have friends who are going through incredibly hard things in their lives – things that would be difficult anyway, but add in their special needs kids and it’s so much more trying.
- I’m angry that whatever I do, it never seems like enough. There’s never a day when I go to bed and say “we did everything we needed to do today for our son and his day was right.”
Apparently I’ve been pretty good at keeping this anger inside, crumpled up behind closed doors like those sheets. But like those sheets, I don’t know what to do with it now that it’s out.
My friend at Diary of a Mom talked about the need to process our anger, and find the hope and progress interspersed with the raw emotion. She’s right. I see it and write about it all the time here. I know how lucky we are in so many ways to have what we do, to live where we live and have the supports that we have.
I’m at a crossroads with this anger. Just like with that that sheet. I could try and stuff it back in to the closet, waiting for it to explode on me again. Or I could attempt to fold it. Maybe laying it out flat on the bed and bringing the corners together. Look at it from a different angle. Try something new.
I can choose to let it eat at me and become more unhappy, causing misery to those around me. Or I can choose to channel it to make some changes in my life and help others make changes too.
Maybe ask for some help.
Right now, I’m going to leave the sheet on the floor until I can figure out what to do with it. It can’t stay crumpled up. Because I’m not just angry anymore. Now, I’m sad too.
“So I start a revolution from my bed
‘Coz you said the brains I had went to my head
Step outside the summertime’s in bloom
Stand up beside the fireplace, take that look from off your face
You ain’t ever gonna burn my heart out
So Sally can wait
She knows it’s too late as we’re walking on by
Her soul slides away
“But don’t look back in anger”, I heard you say” – Don’t Look Back In Anger by Oasis
February 8, 2011
Posted by akbutler under My Three Sons
, sensory processing disorder
| Tags: autism
, autism spectrum disorder
, guest post
, Sensory Processing Disorder
, SPD Blogger Network
, special needs
I have my first post up on the new SPD Blogger Network.
I called it “Mother’s Intuition”. It’s about that moment as parents – as mothers and fathers – that we just know something isn’t right. The moment that we know we have to trust our gut instincts and stop listening to the other voices around us.
My hope is that if you know someone who is struggling, you’ll pass it along. Let them know that they are not alone. Let them know that you are there for them.
- Mother’s Intuition
Click on the picture or click HERE for Mother’s Intuition
And while there, please join us at the site. If you have a story to tell about sensory processing issues, share it with us. You don’t have to be a writer. You just have to be a person with a story to tell. We want to hear it.
A big thank you to my two friends who helped me with this post. They tell the best stories.
February 6, 2011
When I get a phone call from school during school hours, I get a little knot in my stomach.
When I get that call from preschool at the end of the school day, the knot gets a little bigger.
So when the phone rang at 2:45pm last week and it was the preschool, I almost didn’t answer it. I really didn’t want to know.
But I did. Because I’m not that bad of a mom.
It was the lead teacher of the special education classroom. “Everything’s fine,” she said. (Because she probably heard the fear in my “Hello?”) “I just wanted to give you a heads up. Howie was really upset when he got on the van at the end of school. He had made a ship out of bristle blocks and it fell apart right before cleanup time. We tried to help him put it back together, but he was too upset.”
Damn you bristle blocks!
I have to interject here that bristle blocks have become my least favorite toy in the house. We got them originally when Howie’s fine motor skills needed some help and he would get incredibly frustrated building with regular blocks or even Lego Duplos. They were great. At first. Now that he can build, he wants his creations to be perfect and look perfect. And stay together. Not a strong point of the bristle block.
His teacher continued. “He was really mad. The maddest I’ve ever seen him. He was refusing to get on the van and just kept repeating how mad he was. He did eventually get on the van to come home, but he lost his ‘earning’ for the afternoon. If we had had more time we could have worked through it with him, but we were at the end of the day. It was too bad because he was having a terrific day up until that point. I just wanted to warn you. We’ve never seen him like this.”
Oh I have. For a while we struggled with emotions in our house. Howie would have screaming crying meltdowns but couldn’t tell us why. Now he can verbalize it. Sort of. Mostly it involves him stomping around the house for a very long time with his arms crossed, mouth clenched and tears in his eyes, accompanied by the “I’M SO MAD AT YOU!!!” screams.
I thanked her for the information as the van came down the street. I grabbed my boots and rushed out. Last time we had such an incident, I could see his face pressed up against the van window crying as it came down the road. I wanted to get out there as fast as I could.
This time, he was sitting still in his seat. His coat was lying across his lap. And his face said it all.
“I heard all about it,” I told the van driver. “I know what happened.”
“But he pulled it together. He’s even earning his special van treat!”, she said back, with a smile on her face.
I pulled Howie off the van with his arms still crossed. He refused to come in the house even though it was 10 degrees outside.
“I’M MAD!” he yelled.
“I know,” I said. “But please come inside. At least into the garage.”
He gave me that much. And after a few minutes, he found his way in.
“I’m mad because my ship broke.” His tears came back.
“I know, sweetie. Maybe tomorrow you can work on it again.” And I just left that there. I’ve learned. Any more discussion would just add fuel to the fire.
About an hour later, Gerry asked Howie how his day was. Out of the blue.
I held my breath.
“I was mad because my ship broke and I didn’t earn.”
Gerry looked at him for a minute. “Do you want me to help you make it again here?”
Still holding my breath. Waiting for the explosion.
“Ok.” Howie said. “I’m not mad anymore.”
I looked at the clock. It was 4:30pm. I made a mental note to mark this day down in history.
Gerry got the container of bristle blocks and dumped them out on the floor. And together all three boys made their own new ships.
I just sat back and watched.
Later that night, I sent his teachers this e-mail:
Just wanted to let you all know how things turned out this afternoon. He turned it around on the van (J. even let him earn his pop), and came in a little mad (but acted fine). But around 4:30pm, he said “I’m not mad anymore”. Gerry asked him why he was mad in the first place and Howie explained about the problem with the ship. Gerry asked him more about it and Howie said “maybe I could make it again here.” Gerry told him he’d help figure out what went wrong with the ship the first time. And while they couldn’t make the exact ship, Gerry, Lewis and Howie all made ships together to fly around. Success. Pictures attached to prove it.
(well, until Howie bashed into Gerry’s belly with his ship, but it all can’t be good all the time )
thank you for working this through with him. He just needed some time to process it all.
And here are those pictures to prove it.
There is my permanent record of progress. A year ago – a month ago? – this could have ruined the whole day for the whole family. But as a team – at school and at home – we solved it together.
I’m still putting away the bristle blocks though. I don’t need that kind of stress.
“Together we’ll stand
Divided we’ll fall
Come on now people
Let’s get on the ball
And work together
Come on, come on
Let’s work together” – Let’s Work Together by Canned Heat