November 29, 2010
My brother says I have mild anticipatory anxiety.
It’s ok, he’s a psychologist so he’s allowed to say that. Mostly because it’s true.
I found many random websites with definitions of anticipatory anxiety, but the most straightforward one was this one : anxiety that one experiences before starting a challenging activity. Most often, anticipatory anxiety is a lot higher than what you actually end up experiencing.
I’m sure my brother has a better definition, but this one sums it up for me perfectly.
I was definitely in high anxiety mode before our Thanksgiving trip last Thursday. I usually starting panicking about two days before the trip as I start to plan to pack (note I didn’t say actually start packing, because I can’t seem to get to that point until the night before we leave). I start making lists of how many shirts for each person, mapping out our route and departure time, and I start shopping for all the food we’ll need for the trip.
Now remember, it’s only a 250 mile trip to my mother’s house. And we’re only going to be gone two days.
But in my head I start working through what I need to do to make the trip successful – there and back. Extra clothes. Snacks. DVDs, books, games. Heck, I even wrote a post about everything we have to bring with us.
I’m not sure why I get this way. Well, actually I do. Over the past two years I’ve become quite a control freak. I know it’s all tied to my son’s sensory issues and his spectrum diagnosis. In our house, I can attempt to control how he behaves and I have all my “tools” at my disposal. Timers, schedules, sensory breaks, quiet time for Lewis’ nap – I can do all that in the house. In the car with all five of us, it gets harder to manage.
Plus, I have past experiences to pull from. On one car ride, Howie asked for a hug for one hour straight. On another, his car seat was uncomfortable so he yelled for a good portion of the trip, just as the baby had fallen asleep for his nap. Then Gerry will chime in that Howie’s being too noisy, and a five hour car ride ends up feeling like ten. Or more.
Add in that we were traveling for Thanksgiving – my favorite holiday but not the easiest one for the rest of my family. I’m the only turkey/gravy/sweet potato eater of the bunch. Past Thanksgivings, I’ve spent the whole time either convincing my kids to try the turkey or chasing them out from under the table after 5 minutes of sitting. My vegan husband would eat the rolls and carrots. For the last eight years, my favorite meal of the year was inhaled in 3 minutes so I could retreat to another room with my kids.
So yes, I was panicking about this trip. All parts of it. In my head I got so worked up about the trip that I thought we shouldn’t go. Or couldn’t go. My anticipatory anxiety was leading me to think we should just cancel the whole thing and stay at home. In other words, go back to the definition above.
But I couldn’t listen to it. This time, I was determined to make things different. So we made some minor adjustments to our travel plan.
Instead of our usual departure day on Wednesday, we decided to drive up on Thanksgiving morning. The weather was perfect and the roads were empty. There was no eight mile backup on the Massachusetts Turnpike like the day before. And because we left on Thanksgiving when nothing would be open for lunch, I packed us each a picnic for the car ride instead of our usual hour long stop along the way. We had a total of three bathroom breaks and one 15 minute stop to eat our lunch in a parking lot. What was usually a five and a half hour car trip ended up being four and a half. Perfect.
I did have a few moments of panic on the way there. Howie’s headphones didn’t fit just right and he got frustrated immediately. Thanks for some maneuvering, I got them to sit properly on his head so he could listen to “Soak Up The Sun” by Sheryl Crow 30 times in a row. I was afraid that Lewis wouldn’t nap on the ride because he woke up later than usual that morning, but he slept for an hour. And because of some advance planning with a new DVD and a organic lollipop, Howie stayed quiet long enough for Lewis to sleep. Gerry had a pile of Star Wars books to read for the ride, so we didn’t hear from him at all. We arrived at my mother’s house around 2pm, just in time to unpack and get ready for dinner.
As we sat down for “feastThanksgiving” (as Howie called it), that anxiety set in again. But there were fewer guests at dinner this year (13 instead of the usual 30) so that helped with the noise level in the room. We had turkey from Panera Bread for the kids to eat, since it’s the only turkey Howie likes. My mom’s friends are vegetarians, so they made several vegan dishes that Tim could eat. And suddenly…we were all sitting down quietly and eating.
Let me say that again. ALL FIVE OF US WERE QUIETLY EATING. For more than 5 minutes. And I enjoyed not one, but two helpings of stuffing, turkey and sweet potatoes. And it was all hot.
Howie said it was the “best feastThanksgiving ever!”. Tim said it was the most he had ever eaten…ever.
Our ride home on Saturday was the same as our ride up – no traffic, no long lunch stops, no meltdowns. Just a regular road trip. Dare I say, a “typical” family road trip?
Clearly, my anticipatory anxiety worked to my advantage this time. By panicking ahead of time about all the things that could go wrong, I worked out a plan to make sure things would go right. I’m not sure that my brother would agree that this is the best treatment plan for my anxiety issues, but when you’re not paying for the therapy you go with what you got.
Maybe next year, my anxiety level won’t be so high. But if it is, I’ll be calling my brother for more free advice.
“We can never know about the days to come
But we think about them anyway
And I wonder if I’m really with you now
Or just chasing after some finer day.
Is making me late
Is keeping me waiting” – Anticipation by Carly Simon
November 25, 2010
Another thing I am thankful for is that my post “Motherless Child” is on Mamapedia today! I know many of you have left me comments on this one before, and it was your encouragement that led me to submit it for others to read.
If you get a chance today between eating turkey and watching football, click over here and leave me a comment!
Click here for Mamapedia – Feeling Like A Motherless Child
November 24, 2010
Posted by akbutler under My Three Sons
, sensory processing disorder
| Tags: autism
, autism spectrum disorder
, Sensory Processing Disorder
Every year at Thanksgiving, we go around the table at my mother’s house and say what we are grateful for.
My usual answer is, of course, my family. This year is no exception.
Except this time, my family has expanded quite a bit. It hasn’t been an easy year. But in the 11 months since my son’s autism diagnosis my family has grown to include this wonderful and welcoming community of fellow parents with children on the spectrum. I truly feel like they are all part of my inner circle now, because without them to lean on, I’m not sure I would have made it.
So forgive me if I forget a few names in this list – know that if you are out there and I’ve “met” you, you’ve helped me.
This year, I am thankful for:
- My friends from Spectrummy Mummy, Welcome to the Mad House, and I Should Have Called Him Calvin, who dropped everything when I was having a crisis of confidence to help me through it via e-mail exchanges, even in different time zones across the globe;
- My SibShop mom friends, who have shown me a path to being a better mother through their grace and humor and tireless dedication to our amazing community (I won’t “out” you here but you know who you are);
- The three moms who welcomed me immediately at my son’s school after his diagnosis, and who instantly invited me for playdates without hesitation;
- My support group, who without even knowing it have changed my life;
- My fellow writers Hartley, Caitlin, Patty and Michelle, whose amazing talents have pushed me to be a better writer;
- The writers in the SPD Blogger Network, who were the first people online to show me that I wasn’t alone;
- The high school and college friends that I have “rediscovered” here through this blog, who have encouraged me to write my story and who have been brave enough to share their parenting struggles with me;
- The moms of my kids’ best friends, who have become my best friends as well;
- My friend N., who while constantly crushing me at Facebook Scrabble still manages to make coffee squirt out of my nose with her hysterical instant messages; and
- The unbelievably honest and warm community of parent bloggers that I have grown to love and trust. There are too many to mention, but click on any name on any of the comments on any post in this blog and you’ll meet an amazing person doing heroic things every day.
Of course, I am also eternally thankful for my actual family this year too. My extended family of aunts, uncles and cousins chose the path less traveled by opening their arms and hearts to us to embrace our family, when they could have very easily turned away. My brother and sister-in-law have continued to be beyond supportive and helpful, even from across the country. My sister, of whom I am so proud, has asked me for a blue puzzle piece on her coat this winter. My mom, a special educator herself, has gone above and beyond what is expected of a grandmother. And she gets a huge thank you for staying with Tim and the boys when I went to see the Glee tour in New York City.
And just like every year, I am most grateful for my boys and for my husband Tim. Every day they make me thankful that I am a part of this family.
Howie came home yesterday from school with a drawing of me. His teacher asked him what he was thankful for and he said “my mom”.
Right back at you, little man. Right back at you.
“I got all my sisters with me
We are family
Get up ev’rybody and sing
Ev’ryone can see we’re together
As we walk on by
(FLY!) and we fly just like birds of a feather
I won’t tell no lie
(ALL!) all of the people around us they say
Can they be that close
Just let me state for the record
We’re giving love in a family dose” – We Are Family by Sister Sledge
November 22, 2010
Dear Dr. D-
I could just hug you.
If you knew me better, you’d know that hugging isn’t my thing. But leaving your office today after our first follow up visit since Howie’s diagnosis, I felt like I could fly.
Because you called me “Super Mom”.
It’s clear I fooled you, but it doesn’t matter. You said it and you can’t take it back.
You called me “Super Mom”.
You were impressed by how far we’ve come in just a year. You told me Howie’s IEP was one of the most comprehensive IEP’s you’d seen in a while. When we talked about all the supports and services he was receiving, you were excited because you could tell it was helping.
You told me I clearly had a great team put together. Your eyes widened when you saw Howie write his name – not just because it was legible, but because his grip on the crayon was so much better. We talked about his OT supports and the fact that we’ve worked sensory breaks into his daily log sheet. You asked about speech, and when I told you he didn’t qualify for direct services you weren’t surprised, but reminded me to keep an eye on his pragmatics. I told you his one-on-one aide is always with him to help facilitate social interactions in the classroom, and at playdates at home I’m there to help. I said he was starting to pretend play, and interact better with peers. I told you it was getting easier. You said you could tell.
And that’s when you called me “Super Mom”.
You told me to push for a social speech group for him. Maybe not in preschool, but definitely for kindergarten next year.
When you asked about home supports, you were clearly asking to see if I was getting help myself. I told you that we used our home services during the spring, but this fall I have kind of let it slide. I said I just didn’t know how to translate our home issues into a concrete problem to be solved. When you suggested that the teacher just come in and simply observe – Supernanny style – it made sense. You said it might be something as simple as listening to our interactions, and tweaking our language. Even in our small amount of time together, you heard me ask Howie to do things, instead of telling him it was time to do things. You reminded me that if he doesn’t have a choice in the situation, don’t give him one. It creates a climate for non-compliance. I didn’t even know I was doing it.
I said the hardest thing at home right now were sibling issues. It was difficult keeping Gerry from getting frustrated and angry when Howie can’t control his behaviors. I said that with Lewis I couldn’t tell what were actual behavior issues, or just mimicking Howie’s stimming. And I shared that it was getting harder to help Lewis understand the difference between right and wrong, because with every wrong choice, Howie is there laughing and egging him on. You reminded me that this is exactly what the home services are for.
Then, seemingly from left field, you asked me more about Lewis. Nonchalantly, like it was part of the conversation. I forgot that you didn’t know about all the EI testing we’ve been through, so I quickly filled you in. Long story short, he has speech delays but didn’t qualify for services, but we weren’t really concerned about any other areas. You took it all in, and suggested we do a full developmental assessment anyway through your 0-3 clinic, just to make sure. The only reason not to, you said, was to keep from raising my anxiety level. We laughed together when I said that it was too late. I realized later you were concerned about the younger sibling link to increased risk of spectrum disorders. You care. And I’m so grateful.
Your next steps were clear and concise. In a year or two, we’ll talk about neuropsych evaluations, but you didn’t see it necessary now. You also mentioned we should start looking into Cognitive Behavioral Therapy methods, because high functioning kids like Howie respond really well to that around age six or seven. You thought he was too young now at age four, but we should keep it on the back of our minds.
I mentioned that our annual IEP review meeting was coming up in January. “Don’t let them change a thing”, you said.
Finally, I asked the big question. Considering all the progress we’ve made in such a short period of time, considering where we are now…was he misdiagnosed?
No. You were clear. Howie meets the criteria for high functioning autism. His successes, you said, were because of the excellent services we’ve received. And again, you told me “don’t let them change a thing.”
I won’t. I’ve never been so happy to keep the status quo.
You called me “Super Mom”. And after this appointment, I feel like I could save the world.
“I am I am I am Superman and I know what’s happening.
I am I am I am Superman and I can do anything.” – Superman by REM
November 21, 2010
I’m over at Hartley’s Life With 3 Boys today getting ready for Thanksgiving. Come read my packing list and see how it compares to yours!
813 Mile Car Trip
November 20, 2010
On Thursday, I made my triumphant return to storytime at the library.
There was no parade, no confetti, no shouts of “You Go Girl!!”. But there should have been.
It was the first activity that Lewis and I had ever done together. Yes, we’ve been to the supermarket, Target, and many other shopping adventures. But never an actual “activity”. Never something just for him. And for me.
It wasn’t always like this. When Gerry was a baby, we did everything. We did all those gymnastics classes, music classes, and puppet shows. I’d take him to the park to play and we’d stay all morning. And we went to story time at our local library before he was old enough to walk. Gerry would stay close to me, right in my lap, and while the other kids got up to explore, he always stayed put until the librarian was finished. We’d spend hours at the library, sitting at the table, reading books, choosing our favorites and taking them home.
When Howie was a baby, we tried all those things again. Before Howie was old enough for his own story time, I’d try to take Gerry to different activities at the library so he wasn’t missing out. We had just moved to town and I thought it was a good way to meet other kids and parents. Inevitably, I’d spend the whole time in the hallway with Howie. He was either screaming, crying, or running away. Following close behind would be Gerry, because he didn’t want to be in there alone. After several attempts, we just stopped going. I tried a few times when Howie was older (with baby Lewis in tow) and he still couldn’t sit there…for anything. It was embarrassing. I felt like the only one there chasing after her kid, covering his ears so the music wasn’t so loud or pulling him away from the crayons because it wasn’t craft time yet. So after getting yelled at by the librarian for signing up for events and not showing up, we stopped even trying.
When Lewis was finally old enough for his own story time, I was a bit reluctant. Ok, VERY reluctant. Once bitten, twice shy. I thought it was better for us to just do our own thing. I can read to him. I can color with him. I didn’t want to go through the same embarrassment again.
But both my pediatrician and speech therapist told me Lewis needed be around kids his own age. He needed to hear other 2 year olds talking and he needed to learn how to play and interact with them. My friend has a 2 1/2 yr old, so we started searching around for activities that we could try – gymnastics, music classes – to get ourselves back out there. I turned them all down. It cost too much, it was 25 minutes away, the time of day was bad. But really, I was just too afraid.
Then, the flyer for story time at the library came home. A time just for 18 month olds – 3 yr olds. Free. Five minutes away. 10:45am.
It was like the library wrote the flyer just for us. So my friend and I signed up. Thursday was the first class.
I’d like to say it all went smoothly. That Lewis sat in my lap and listened to the story and danced to the music and did the craft. He didn’t. The crayons were out when we first got there and all he wanted to do was color. Of course, that was last on the agenda, and I had to keep pulling him away from the craft table. He stood on my lap during the first story, left the room during the second one, and refused to give up his bean bag during the “pass the bean bag” game.
But you know what? I didn’t care.
This time, I didn’t care what the librarian or the other parents thought. We did our best to conform with the story time flow, but if we couldn’t, we didn’t. When he screamed because he couldn’t color, I gave him his pacifier. When he couldn’t sit, I let him stand, and when he couldn’t stand anymore, we left the room until he could come back again. I didn’t force him to give up his bean bag for the game. And looking around at the other kids? They weren’t playing by the “rules” either.
When it was time to color, Lewis sat very nicely at the table. He picked out the green crayon to match his shirt, and colored his little cut out person with scribbles and dots. And when he was done, we were done. I didn’t wait for some goodbye cue from the librarian. I followed my own kid’s cues. We left the library with my friend and her son. No meltdowns. No tantrums. No screaming and yelling. Lewis held my hand as we walked down the path to our car and we went home. Just like that.
To say that my kids are different would be ridiculous and obvious. Of course they are different – every kid is. They have different strengths and challenges. Howie is very articulate, yet struggles with sensory overload, auditory processing and behavior control. Lewis is the opposite. Certain activities will work for one child and won’t work for another. There’s nothing wrong or shameful about that.
What I have to remember is that I am different now too. I am a different parent than I was four years ago or even two years ago. I understand my kids’ limits better and when it’s ok to push them and when it’s ok to pull back. I am more focused on their needs and not conforming to what the librarian wants or thinks. I attempt to work with in the parameters of the activity, and if my kids can’t do it, we leave and return when and if we can. I’m not going to make the experience miserable for my child, the librarian or the other families in the room.
No more embarrassment, no more shame. It’s not worth it. Because the alternative is to never leave the house. That can’t be an option.
So when the next Thursday story time comes around, we’ll be there again. I’m actually looking forward to it this time.
“You remind me I live in a shell
safe from the past, and doing’ okay
but not very well
No jolts, no surprises
No crisis arises
My life goes along as it should
It’s all very nice but not very good
And I’m ready to take
a chance again” – Ready to Take a Chance Again by Barry Manilow
November 17, 2010
It’s the 17th, so I’m writing at Hopeful Parents today. I learned some valuable lessons about parenting from my dad, and I thought I’d share them this morning.
Click Here for Oh Very Young
November 15, 2010
“What is your escape? What is the one thing that you do that makes you feel like you?”
The question loomed over me all month long. It was the discussion topic for our support group meeting. In order to learn a little bit more about each other as people (and not just mothers of kids with special needs) we decided we’d share our “escapes”. The hope was that it would get us all talking about the positives in our lives, and maybe discover that we had some escapes in common.
So all month I thought about it. What was my escape?
(side note: I got permission from the women who were there to share this. That support group is my safe haven to share things, and we expect that whatever we talk about there, stays in the room. It’s our Vegas, baby. And I’ll protect that confidentiality to the end.)
As we went around the room, the clear winner in the escape category was working, followed by exercising.
Then it was my turn. What was my escape?
I had none.
“You blog?”, my friend suggested.
Frankly, this was going to be my original response. It is what I do when I have time to myself and I love writing. It is something that is all mine. But as I listened to the other women there, I realized it wasn’t really an escape. It doesn’t take me away from everything else going on here, in fact in many ways it amplifies it. I’m not “just me” when I’m writing. I’m still my kids’ mom.
Blogging is sometimes more like free therapy for me. So all the words and feelings don’t explode out of my head and land on the kids or my husband.
For my friends, work and exercising made them feel like they were accomplishing something. Setting goals and achieving them. An expert in something, the “go-to” person when things went wrong. A time when their brains were switched from “mom” mode. I remember that. I used to run an office, manage payroll, plan the schedules for over 20 teachers and still teach at night myself. Now I’m the mom who drops her kids off at school in her pajamas and forgets to pack lunches and snacks.
I left that night on a search for my escape.
I tried to think what it could be. Maybe it was running? This summer I ran in preparation for my first 5K race. It did get me out of the house alone – just me and my iPod. But it still didn’t feel like an escape to me. In order for me to actually get out to run, many planets had to align. My husband had to be home to be with the kids. I needed to have had a decent night sleep. I couldn’t go when meltdowns were happening around me. My running time depended on someone else’s schedule.
In my head, an escape had to be something that happened on MY time. Not when I felt like everyone else’s needs were taken care of.
I went through it all in my head. I don’t like to cook. I’m not crafty. I can’t sew. Watching Martha Stewart for more than 5 minutes makes me itchy.
I have tossed around the idea of doing some part time work from home, but the last two times I had that thought I ended up pregnant again. So you can imagine I’m a bit gun shy at the idea.
Before kids, we did all sorts of things to escape. Tim and I would spend the weekend camping at the marina and go out on the boat all day. We’d sit at Barnes & Noble and have coffee and read the Sunday paper. We’d sit on the couch and do crossword puzzles together.
Even after Gerry was born I still found some time to escape. He was in daycare three mornings a week, and I would go to Jazzercise or take a walk with the dog, or even grocery shop alone. Howie went to daycare two mornings a week the summer before Lewis was born, and I used that time to get ready for the new baby. It was my quiet time to plan as I pleased.
I need my escape to be when everyone else is engaged in their own thing as well.
With that, I realized that my escape time will be coming. Next September, Lewis will be in preschool two mornings a week, and the other boys will be in school full time. I’ll have five hours each week that will be mine again.
So I have 10 months to find my escape. Maybe it will be something I’ve done in the past. Maybe it will be something new. I’m open to suggestions. It’s ok that right now I don’t have that escape. I know it will come. I’m looking forward to discovering what that one thing will be for me, something that helps me flip the switch to “Alysia” mode.
In the meantime, I know that in my own house I am the expert. I am that “go-to” person when things go wrong. I’m the one setting the goals and it’s my job to help my family reach them. And it’s ok if, for now, I leave the switch in “mom” mode.
Especially since I can do that in my pajamas.
“I said, ‘I never knew’…
That you liked Pina Coladas, and getting caught in the rain.
And the feel of the ocean, and the taste of champagne.
If you like making love at midnight, in the dunes of the cape.
You’re the love that I’ve looked for, come with me, and escape.” – Escape (The Pina Colada Song) by Rupert Holmes
November 12, 2010
I wanted to be sad today.
Today marks twelve years since we lost my dad to pancreatic cancer.
I wanted to sit with my cup of coffee and think about the last moments we had together. I wanted to cry. I wanted the world to stop for one moment so I could miss him.
But the kids wouldn’t let me.
Well, really, life wouldn’t let me.
Lunches and snacks still had to be packed. Kids had to get dressed. We were late (again) for school. We were out of juice. I needed to help a friend.
I lit the traditional Jewish memorial candle and Howie asked me what I was doing. I explained to him that the candle helped me remember my dad today and that it would burn all day and all night long. He wanted to know exactly what time it was going to burn out.
As I bent down to talk to him, I realized how much of my dad is still all around me.
I see him in Gerry’s third grade school picture. His ears, eyes and smile are almost identical to a picture we had on the wall growing up of my dad’s school picture.
I see him when Howie “eye-squishes” after laughing so hard his eyes tear, and when he picks his “favorite seat” on the couch squished down behind one of us, just like I used to do when I was a kid.
I see him in Lewis when he gets the mischievous third child twinkle in his eye (my dad was the third of five boys).
There are pieces of my dad everywhere.
I wanted to be sad today. I wanted to grieve for all the time we didn’t have together. I wanted to be angry at all the things he missed. I wanted to think about how his death took him too soon from all of us.
But I couldn’t.
How could I be sad when there’s so much life – his life – still here around me?
Those smiles, those squeezes, and those twinkles?
How could I do anything else but celebrate him today with a smile, an eye-squish and a twinkle of my own?
I lit the candle today for my dad and for all those who have been touched by pancreatic cancer. November is Pancreatic Cancer Awareness Month. It is one of the hardest cancers to detect and has one of the lowest survival rates. To learn more, visit http://www.knowitfightitendit.org/
“Now I’ve been happy lately
Thinking about the good things to come
And I believe it could be
Something good has begun
I’ve been smiling lately
Dreaming about the world as one
And I believe it could be
Something good’s bound to come” – Peace Train by Cat Stevens (one of my dad’s favorite songs)
November 10, 2010
It’s the premiere of my first post as a regular contributor to Hartley’s Life With 3 Boys today! I’m so honored to be there. Hartley is the reason that I started blogging on a regular basis, and joining her Sensory Processing Disorder Blogger Network has been a life changing experience for me. I have met so many amazing people through that network, people that I’m proud to call friends. I’ll be writing on her site twice a month along with Caitlin from Welcome to Normal, Population 0, Patty from Pancakes Gone Awry, and Michelle from She’s Always Write. These women, including Hartley, are incredible writers and I am humbled to be included with them.
My post today is called “Getting to Know You” so that Hartley’s readers could meet me and my family.
Click on this button to get there!
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