October 31, 2010
I had it all planned out for my big November 1st “Autistics Speaking Day” post.
I was writing it in response to the movement by an Australian based organization, trying to get people to stay off Facebook and Twitter for 24 hours today, as a way of showing solidarity and support for those with autism.
I was going to write why I wasn’t going to be silent on this day. You know, I’m all for awareness of any type, but something about this just didn’t sit right with me. Part of that was about my ego – I just didn’t think that my Facebook friends and followers on Twitter would notice or even care if I was silent for a day. Contrary to what my husband thinks, I’m not on there all day long.
Then there was the staying silent part. My child is quite verbal, and we’ve worked really hard to improve his communication and social speech skills. Being quiet is contrary to that. And I’m guessing that my friends with non-verbal children would do anything to hear words. Any words. Most of them have moved heaven and earth to help their child communicate. Why would I stay silent to recognize that?
So I was going to use this space to tell you about my amazing son Howie. How at age four he looks to the outside world like every other four year old, but he’s not. We work incredibly hard every hour of every day to help him look that way. I was going to tell you that his teacher calls it a “dance” – most kids test their boundaries but are able to dance that line and pull back to appropriate behavior. My kid can’t. He has to be constantly reminded how to pull back, and if I let up at all, he dances gleefully across that line and we’re done. I was going to write about the hours of behavior therapy and occupational therapy we’ve been through to get us to the point where he can function in an inclusion classroom with an one-on-one aide and can finally draw a picture without a giant meltdown.
I was going to write about what autism is like in my house.
An e-mail. From an acquaintance. Her young child had just been diagnosed on the spectrum. On Wednesday. She had found my essays online and having nowhere else to turn, got in touch with me. She was devastated. Overwhelmed. Sad, confused, upset, bewildered…you name it. She had been blindsided. A routine checkup turned into something else.
I sent her my phone number. And we talked.
The words she spoke were so familiar. How did I miss this, she said. What am I not seeing? He talks, he makes some eye contact – how is he on the spectrum? No one sees this in him. My family and friends think the doctors are crazy. What did I do to cause this? Do I change his diet? Not vaccinate? Where will he go to school? How will I deal with therapists in my home all week? Will he have friends? What do I tell my other children? Will he ever be normal? And what the hell is ABA therapy?
She cried. I did too.
I know those questions all too well. We were asking the same ones almost a year ago ourselves. I know the grief of realizing your child might be different. I know how it feels when your world feels like it’s falling down around you.
I told her all that. With my words.
I told her I knew exactly what she was saying. I have grieved for the life I thought we might have with our son – the preschool class that I thought he’d attend, the family trips I thought we’d make. I have been in the position of explaining to family and friends why my son is different even though they can’t see it. I told her that I have been just as overwhelmed and guilt-ridden as she was. But I also told her that although it might be too soon to hear it, things can get easier. The earlier the interventions start, the better they work. I told her that my son has made remarkable improvements in the 8 months since his diagnosis thanks to his amazing teachers and great therapies.
I told her I was here for her whenever she needed to talk.
She said when she read my article it was like hearing her own words in her head. When she had no one else to turn to, she bravely reached out for a shoulder to cry on.
If I had remained silent, she would be feeling all alone.
So many kids are being diagnosed on the spectrum every day. So many parents are hearing the words “your child is autistic” for the first time. So many parents are feeling like they have no one who knows what they are going through.
If we aren’t talking, if we aren’t sharing OUR stories, how will anyone know that we understand? How will they know that we get it?
This is why I’m not going to be silent today. I need to talk. I need to share my story anywhere I can.
Because I also need to know that I’m not alone as well.
“Hush hush, keep it down now, voices carry
Hush hush, keep it down now, voices carry” – Voices Carry by Til Tuesday
October 27, 2010
I’ve been finding that lately I’ve been in a bit of a funk.
I seemed to be mired in all things autism lately. So much of what I read and write is about my son and his issues caused by his autism, and how it affects him and our family. There are some days that it feels like it’s all I talk about or read. Many of blogs I read are autism-related, and 90% of the people I follow on Twitter are involved in some aspect of autism education or awareness (the other 10% are the cast members of Glee). It’s not surprising that this is my focus, considering this is my life 24 hours a day, and I learn a tremendous amount from all the information I read.
Sometimes, though, I need a break. And I’m guessing that people reading this might need one too. Sometimes I just need to pull myself out of that world and into another one, even if for a moment.
So I decided that I would start a series of posts here called “The B Sides”. I may be dating myself here, but “B Sides” were the flip side of record singles when they were released on 45s. They were usually the songs that the artists were attached to, but the record companies didn’t think were as radio friendly as the A side. Famous B sides include “Ruby Tuesday” by The Rolling Stones and “Rock Around the Clock” by Bill Haley and His Comets.
My B Sides are going to be stories about my favorite memories, ones that have had a lasting impact on my life. I’m going to try to write a “B Side” at least once a month. It may be more if I need it.
So for my first B Side: Squirrels In My Pants.
It’s 1994 and my family is at the Grand Canyon. My sister, brother and I had never been there before, so while on a family vacation to Las Vegas, we decided to take a side trip to this amazing place. It had been quite a journey to get there, complete with my father sitting in the front of the tiny 8 passenger plane to balance out the weight and my sister vomiting into a sock halfway through the flight.
I remember standing near the rail of the canyon with my family along side several other tourists who had been smart enough to take a bus there. There were a few other families walking around, snapping pictures of each other with this unbelievable wonder of the world behind them. And because we were outside there was plenty of wildlife around. In particular, squirrels.
As we were all admiring the view from the rim of the canyon, a family near us caught my mother’s eye. She was watching them intently with this worried look on her face. The kids were crouched down on the ground with little bits of food in their hands trying to feed the squirrels. Their parents were watching, laughing and encouraging them.
My mom was standing there saying under her breath: “Don’t do that. Squirrels Bite”.
She was dying to go over there and say something to the parents. The words would have been nicer (because she’s a nice person) but she wanted to tell them something like “How could you let your kids do that? Are you crazy?”
We stopped her.
We all convinced her that it wasn’t her place to say anything. The squirrels weren’t really going over to the kids, and it just wasn’t her business to butt in. And of course, we laughed, because while it was just like my mom to want to go over and protect those kids, the only words she could get out were:
“But squirrels bite!”
“Squirrels bite” became a catch phrase for our family from that point on, and still is. We use it as a reminder whenever one of us wants to butt in to someone else’s business. And after almost 15 years as a member of our family, my husband says it now too. It’s just part of our language now. It’s also a reminder of one of our last family vacations together, before we became adults and before my dad passed away.
Last week, I had a conversation with two friends that reminded me of this memory. Both of these two friends have older kids on the spectrum. We were talking about Howie and one of them asked me when I started to really notice that things were different with him. I went back and forth a bit and I said that even though I knew early on that his sensory stuff was out of whack, I didn’t start to see other things until he was about two. These friends have known Howie since he was little, and they said they saw it, maybe even before I really knew. I asked them why neither of them said anything to me about. They said they didn’t think it was their place to come out and say it. They didn’t know how I would react, and they both saw that I was already doing the things necessary to figure it all out. Independently, they decided that the best thing for them to do was to help guide me and answer my questions, but never come out and say “hey – I think your kid is autistic.”
And they are right. I’m not sure how I would have reacted at that time to hearing that, even though I probably knew in the back of my head that it was true. It was something that we had to find out for ourselves.
Classic “squirrels bite”. They were both dying to say something, wanting to comfort me and let me know I wasn’t alone. But it wasn’t their place to say it. Just like those kids at the Grand Canyon, I had to put the food in my hands and get bit.
I find myself in that same situation every now and again. I see a child at the playground or the baseball field and I recognize the behaviors and mannerisms. I see the dark circles under eyes of his parents. But I don’t say anything. It’s not my place.
But you might see me on the bench at the playground whispering “squirrels bite”. Because they do, you know. Just ask my mom.
(and I know I said I was getting away from all things autism here on The B Sides, but it still seeped in, just like in my real life. I’ll try harder next month.)
“There are squirrels in my pants!
Tell me what’s makin’ you jump like that!
S-I-M-P, Squirrels in my pants!
Ain’t got no chickens,
Ain’t got no rats…
Squirrels in my pants!” – Squirrels In My Pants by Phineas and Ferb
October 25, 2010
I’m watching my son Gerry with one of his best friends. They are sitting on the swings in the backyard, reading a Star Wars book together. At their feet are the toy lightsabers that they have been playing with for over an hour.
We’ve been talking a lot about friends in our house. Specifically, how do you make new friends?
Gerry and his friend have been best buddies since preschool. They live around the corner from us and since the age of four they have been in the same class together, including this year. They have similar personalities, interests and senses of humor. They even look a little alike. When his friend was interested in Transformers, Gerry got interested in Transformers. When his friend started playing Lego Star Wars on the Wii, Gerry asked for it as a birthday present. Everything that his friend liked, Gerry liked.
Until recently. Their interests have started to diverge a bit. Gerry’s friend is a huge fan of Harry Potter, wizard stories and magic. Gerry, much like his father, isn’t really interested in those things. His tastes run more in the science fiction/detective genre – movies like Star Wars and books like Encyclopedia Brown and Charlie and the Chocolate Factory. Gerry’s friend met some new kids this year in third grade who liked wizardry as much as he did, and because Gerry didn’t role with the Harry Potter crowd, he was feeling a bit left out.
Of course, I didn’t know any of this until one day in the car he told me he wanted to make a movie called “Three”. When I asked him what that meant, he said it’s because he feels like he’s three different people – one person with his friends who like imagination games, one person when he’s playing sports, and one person at home.
Pretty astute for a eight year old.
It got me thinking about friends in general, and at what point do we begin to compartmentalize our friends into different groups.
At Howie’s age in preschool, the teachers say that everyone is your “friend”. The kids are taught to be respectful of one another and that everyone should play together and get along. The concept of course is great – that no matter what we treat each other with kindness at the block table and during snack time. For Howie in particular, this is important. He’s lacking the ability to understand how to walk up to a group of kids and ask to play with them, and misses the social cues needed for appropriate game playing and sharing, so he uses social stories and scripts to help him join in.
But at some point, most kids start to realize that not everyone is your friend. Maybe it starts along gender lines. Maybe then common interests start to bond – whether it’s a love of baseball or Legos or Star Wars (if all three could be combined I think my house might explode). And some kids, for better or worse, just aren’t that nice to everyone else. Most kids start to realize that not everyone has to be your best buddy.
I say most kids here because this is a big fear of mine for Howie. He’s getting conditioned to believe that all kids are your friends, when at some point, there will be kids who won’t treat him well because he’s different. I don’t know if he’ll have the understanding to know when kids are treating him poorly, or telling him to do things that he shouldn’t do in the name of “friendship”. At some point, the social script has to change. I just don’t know when that happens.
I’ve been talking a lot about this with Gerry as he struggled with the fact that this best friend of his was going off with other kids. I reminded him that even though his friend had made new friends, it didn’t mean that their friendship was over. I told him it was a great opportunity for him to try to make new friends himself – to seek out others who loved Star Wars as much as he did. We did a little role playing about how to talk to another boy in their class who he thought seemed nice, and I even bribed him a bit by offering to let him watch Star Wars: Episode One if he talked to this other boy at snack time.
The whole conversation had me thinking about my own friends and if I have my group of “three”. I have friends who have kids the same age as mine so we talk about homework, and baseball practice and after school activities. I have friends who have kids on the spectrum like Howie and we share stories, struggles and IEP meeting strategies. And there’s the third group of friends – the people who have known me forever – the type of friend that you might not see for a year but the moment you’re together it’s like you just saw each other yesterday. The type of friend that you can sit on a bench together in Rockefeller Center and just…be. I rely on all of these friends to get me through the day, and without them, I’d be lost.
So I get where Gerry is coming from on this. When one piece of that friend puzzle feels like it’s pulling away, it can make you feel a bit out of sorts.
It’s five o’clock and I have to tell the boys it’s time for their get together to end. They both look at me with those annoyed faces that eight year olds make. They’ve recently found their way back to each other – putting aside their diverging interests to get back to just playing. I watch them get on their scooters as they head to the end of our street, where they will separate : Gerry back to our house, and his friend to his house around the corner. About two strides in, they take off, racing each other and laughing so loudly I can hear them through the closed window. They are two best buddies, having fun just…being.
Everyone deserves to have that one friend that you can always count on to be there for you no matter what. Of all the things that I wish for my kids, the most important one for me is that they are a good friend. If Howie can find just that one person that he clicks with – that understands him and likes him, quirks and all – I’ll be happy. And as I watch Gerry and his friend wave goodbye to each other, I know that for him, that wish has already come true.
(This post is dedicated to a very special friend of mine – the one person who understands the depths of my love for food that turns your fingers orange and who has always let me be just me. I am thinking of her tonight…)
“Why can’t we be friends
Why can’t we be friends
Why can’t we be friends
Why can’t we be friends” – Why Can’t We Be Friends by War
October 22, 2010
Dear Jan the dental hygienist-
I just had to write you and thank you for today’s visit with Howie at the dentist. I have to tell you – I had been dreading this visit all week, all month really. Every time I looked up at the calendar and saw “Howie: dentist appointment 11:15am” I got a lump in my throat. There were a million different ways today could have gone awry. But it didn’t. Thanks to you.
Maybe I should back up and tell you what a rotten week I’d had. Or should I say “crummy week”, because that’s the word that Howie used to describe his day on Tuesday. The week started with some conversations with a few people who I thought really understood me, but then I realized that wasn’t the case. Then came Howie’s “crummy” Tuesday – a day where everything went wrong for him at school. I tried to take away some positives from that day – his teachers had said he was very articulate about why he was having such a hard time – but it was still breaking my heart to see him so angry about school. Four year olds just shouldn’t have bad days. That night ended with him asking for his usual three blankets on his bed, plus his weighted blanket, a giant body pillow and his three foot long stuffed dog in bed with him. The kid was out of sorts even at bedtime.
Wednesday came along with new challenges and guilt. I took Lewis to the doctor for his two year old checkup. The kid screamed from the moment we entered the exam room until we left. And I mean screamed. He must have some post-traumatic stress thing going on with the doctor’s office from being there so much. When he was four months old, he had bronchiolitis and we made many trips to that office to check his breathing. In recent months, we’ve been in to get his ears cleaned after worrying about his speech delay. Can’t blame the kid for hating the place. He calmed down enough during the appointment for the doctor to advise me to get an independent speech evaluation. The guilt was swirling around me as she said “I don’t think he has PDD, but…”, and then Lewis started screaming again. And in my head, I was screaming too.
Jan, Thursday came and it was Lewis’ 2nd birthday. I was still recovering from Monday, Tuesday and Wednesday. More guilt piled on me as I realized that I had no party planned, no cake made, and no presents wrapped. He was falling into the classic “third child syndrome”. On a day when I should have been celebrating, I was wallowing in family pity. The day ended ok, after a reminder from my husband that “he’s two – he doesn’t know”, but I still felt like I was failing him and my family. The kids weren’t happy and I couldn’t even pull together a simple birthday party for my own kid. What was happening here?
So Jan, you can imagine how I felt when Friday arrived and it was time for Howie’s dentist appointment. Of course, first we had to get through our monthly team meeting for him at his preschool. The whole ride to his school I was cursing myself for scheduling two anxiety riddled events in one day. But the team meeting went really well. He’s doing great in school and two months in, he’s fitting in just right in the full day inclusion program. This week had been tough for him, they said, but it was an anomaly and not the norm. His teachers were looking at this week as a teachable moment – his “engine” was running high all week and he was having a hard time regulating himself. I told them I was pretty sure he was coming down with the same cold his brothers had, and his sensory issues are usually out of control about 3-4 days before he actually gets sick. His teachers really seem to understand him and his needs, and I am constantly impressed by how well they work with him.
Even after all this, I was sure I should have canceled that dentist appointment. We really needed it to go well. Jan, his last experience at the dentist was miserable. It was their policy that parents stayed in the waiting room when the kids were having their teeth cleaned, and they stuck with that even after I told them he was on the spectrum and had sensory issues. Fifteen minutes in, I could hear him crying. I went to check, and they stopped me and told me he was fine. When he came out another ten minutes later, I could barely hear what the dentist was saying over his sobbing. I knew right then we had to find another place.
Which brought me to your practice, Jan. We had to get this one right or else I feared I’d never get him back to a dentist again. I talked about it all week. Offered all sorts of rewards and earning opportunities. And I made that call that I dread – I called your office before the appointment and told them he was autistic. I struggle with this all the time, the “should I tell” and the “who should I tell”. I didn’t want to say anything. I don’t want my son thought of as being different. But I had to. I needed him to be treated differently this time. I needed you to know before we walked in that door.
And Jan, you were wonderful. You took us in quickly and quietly told me you had been given the “heads up”. You looked right at him when you spoke and guided him gently through the appointment. You told him we were doing “science experiments” when you painted his teeth purple (his favorite color) to see the plaque. You let him sit on my lap the whole time, and whenever he got nervous, you backed off, talked to him about what you were doing, and took your cues from him. And he did it. He had his teeth cleaned, polished, and covered in fluoride. I was amazed.
When I thanked you for your kindness and understanding, you told me you knew. You told me about your cousin’s child with sensory issues and your nephew with Asperger’s. And that clinched it for me. You got it. I should have known.
And that’s why I had to hug you when we left. If anyone knew that I did that, they’d be shocked. I’m not a hugger. But it was the only way I could express my gratitude for what you did for us this morning without crying. You took what could have been a potentially disastrous appointment and turned it into something special. Life changing. My son left there with his giant purple balloon and told me he “really liked this new dentist”. I couldn’t agree more.
On behalf of my family and my son’s teeth, I thank you for all that you did. See you in six months.
“Monday morning feels so bad
Everybody seems to nag me
Come on Tuesday I feel better
Even my old man looks good
Wednesday just won’t go
Thursday goes too slow
I’ve got Friday on my mind” – Friday On My Mind by The Easybeats (more…)
October 20, 2010
Yesterday I received an e-mail from a young man that I’ve never met.
He contacted me through Facebook, and I wanted to share our conversation here. To protect his privacy, I’m simply going to call him “Jay”.
Jay: I am Jay and I am 19..I have been looking for people on Facebook who know about Autism to chat with as I have Autism myself…it seems you know about Autism. Could we chat? My form of Autism is Asperger Syndrome.
Me: Hi Jay! Thanks for connecting. I’m no expert by any means – my son is 4 and he was diagnosed last Christmas. If you want to check out my blog at https://trydefyinggravity.wordpress.com/ I have a lot of links on there for good information, especially on Asperger’s.
It’s wonderful that you’re reaching out and I would love to talk more.
(yes, I know. shameless plug, but I didn’t know the kid and didn’t know what he was looking for)
Jay: I was 6 years old and in Kindergarten when I was diagnosed…I’ve always tried my best to overcome it by working hard and doing what I can to help others and be a good kid. I have been bullied a lot and made fun of for my condition. What do you think some affects can be of bullying on an emotional standpoint? If you were to see me or even your own kid bullied, what would you tell the kids it hurts or affects inside the victim?What emotions you know can be hurt by bullying?
Like what would you teach kids what bullying can hurt inside others
I am taking some online classes on counseling…so obviously stuff like this and your answers would help some.
Me: I am so sorry for what you went through. No child should have to endure any amount of bullying. You sound like a very strong person.
I want to answer all your questions properly, but I have to put my kids to bed. I will write more tonight.
Me: Ok, so here goes. I hope I answer all your questions.
I think bullying can have lifelong lasting effects. The fact that even now you remember what happened as a kid is evidence of that. And I think the effects can go one of three ways : 1) the child grows up to be an adult with lasting emotional scars and can’t recover, 2) the child grows up hating people, and could become a bully themselves, or 3) the child grows up to be an incredibly tolerant, sensitive and caring kid (which sounds like what you have become).
I’m in the camp of needing to step in when I see any kids being teased or bullied. I used to step back and wait for the kids’ parents to step in, but that doesn’t happen. Sometimes kids listen better when it’s not their parent talking to them. And sometimes the parents are the ones feeding their bullying tendencies (a vicious cycle). I think you hit on something when you ask about what emotions can be hurt. Instead of the broad “how would you feel if…” question, maybe the right question needs to be “if someone said that to you, would you feel happy? sad?” putting the emotion out there. i think it’s different for different age groups.
My hope is that someday kids won’t be bullied because they are a bit different. It might be me just being a hopeful parent, but because so many more kids are being diagnosed at an early age, the differences might not be so apparent. I’m also hopeful that schools will start to do a better job educating parents and kids about differences in learning styles, appearances, etc. so the differences become “normal”. I know they are doing that at my older kid’s school, and he has no clue which kids in his class are on IEPs or need extra help, because they treat every child as an individual there with individual needs.
I’ll say again how sorry I am for what you went through as a kid. It is every parent’s nightmare when you have a kid on the spectrum. I worry every day about my son – he’s smaller than most kids his age – and I know he won’t understand if someone is making fun of him or being playful. I will teach him right from wrong, and I hope someday he’ll be able to teach his peers the same thing.
Thanks for connecting. I hope that helps a little with your classes. You’ve helped me think a lot about the future and how to talk with my kids about how they are treated.
One more website to look at for good info for your classes: http://endthebullying.wordpress.com/. Great blog written by a mom of a child with autism.
Good luck and feel free to contact me again.
Jay: The bullying really hurt my feelings, so in that, I’ve learned how important feelings are and that you need to get your feelings out, would you agree? I’ve read a lot of kids have trouble expressing their feelings…so I guess am lucky to get my feelings out. How important do you think feelings are in life and do you take feelings very seriously?
A lot of kids who hurt my feelings and knew they were said they were glad my feelings were hurt and didn’t care about feelings at all and that feelings don’t mean anything. Just hearing this, does it hurt your own feelings?
I think feelings is a great subject to talk about and kind of underated. My family has made a commitment to feelings for years. We have lots of books on feelings that we read. That helped me through the bullying, getting the feelings out, reading about hurt feelings and how to get better from them
I’d love if you can for me, sit down with your child, and have a talk about feelings. help learn about feelings and how important the feelings are and let me know how it goes, can you do that for me please?
Me: (in tears as I write him back): You are wise beyond your years, and it sounds like you have wonderful parents. Those kids didn’t deserve to be anywhere near you.
And yes, for you and for my kids, feelings will be the optic of tonight’s dinner conversation. On behalf of my family, thank you.
would you mind if I wrote about our conversation here? I won’t use your name, but your message is powerful and I’d like to share it. It’s ok if you say no.
Jay: Yes you can, no problem at all.
Now, I don’t know who Jay is, and some of you might think he was making this all up and playing me. My sense is that he’s not. I feel like he was just a young man reaching out to someone who might understand him. I do. It doesn’t matter though. His message is what’s important. His story is what every parent worries about.
He’s right that a lot of kids on the spectrum have a hard time sharing their feelings appropriately. They have difficulty showing empathy – something we struggle with every day in our house. But it doesn’t mean that our kids don’t feel. In many ways, I think they feel even more deeply than the rest of us. They just can’t express it.
So, for Jay, tonight we’re going to talk about feelings at dinner. I’ll talk about it different ways with each of my kids. With Gerry, we can talk about what it feels like when someone doesn’t want to play the same game as he does at recess. With Howie, I can ask him how it feels when he doesn’t see his favorite activity out at center time. And with Lewis, even though he’s not quite two, I can still ask him to smile and show me “happy”. And we can all make that happy face at the table together.
In honor of Spirit Day today, I’m hoping you do the same with your family. Culture changes have to start at home, with us as parents. Let’s talk to our children about their feelings, and teach them how to treat others with respect and tolerance, even if they are just a little different. Because we all want our kids to share like Jay did with me.
“Hey baby, there ain’t no easy way out
Hey yeah, I’ll stand my ground
And I won’t back down
Hey baby, there ain’t no easy way out
Hey yeah, I’ll stand my ground
And I won’t back down” – I Won’t Back Down by Tom Petty
October 17, 2010
Sorry – I had trouble with the website, so here’s the post again with the right link:
It’s the 17th of the month, and it’s my day over at Hopeful Parents. Join me as I talk about my first 5K race, my revelation at the halfway point, and about the best laid plans..
Click Here for Run Baby Run
October 17, 2010
It’s the 17th of the month, and it’s my day over at Hopeful Parents. Join me as I talk about my first 5K race, my revelation at the halfway point, and about the best laid plans..
Click Here for Run Baby Run
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