January 31, 2011
My kids play this game called “The Deep Pit of Darkness”
Gerry, my oldest, will lay down on the couch with Howie behind him. The object of the game is for Howie to push Gerry off of the couch onto the floor, or as they call it, the “deep pit of darkness”. Gerry created this game after I told him that it helped Howie to do certain exercises that involved pushing or heavy lifting. I was thinking more along the lines of, say, wheelbarrow walking or thumb wrestling. My boys interpreted it as “Let’s wrestle while Mom is trying to make dinner.”
The “deep pit of darkness” game keeps them occupied for about 15 minutes, until inevitably someone gets pushed or kicked somewhere that hurts.
I realized that I have been in my own deep pit of darkness lately. And it’s not a game.
We have had a lot of snow here in southern New England. A lot. I’ve lived in New England for most of my life so snow in winter isn’t usually this depressing. Hell, I’m the girl who used to wait by the bus stop in high school in February with no socks. The college student who walked in -20 degree weather to class with a wet head and no mittens. I’m no stranger to winter. I love living here and am very good at ignoring Facebook posts from friends telling me how nice it is where they live.
But this has been a particularly difficult winter in addition to the weather. December brought the one year anniversary of our autism diagnosis. Our annual IEP meeting. And while we have been able to celebrate our progress up to this point, there are still reminders every day how different our lives are now.
Add all that to the many snow days and holidays this month, and I felt trapped in my house with three young boys.
And yes, I said trapped. Because with 4 feet of snow outside, it felt like the door was closed shut. My claustrophobia kicked in. Like the walls were closing in on me.
I felt tired. Tired of reading every detail on this last IEP to make sure all the words are right. Tired of managing the chaos in that runs through this house and ignoring the clutter piled up around me. Tired of pretending to care what we eat for dinner. Tired of feeling like a bad parent because I want my kids to be at school and not home with me. Tired of sitting in front of Lewis trying to get him to repeat my words. Tired of not sleeping. Just tired of everything.
I spent much of the last snow day just staring out the window, ice cold coffee in hand. The boys were arguing if it was legal to have a jet pack to get out of the deep pit of darkness. As I watched the giant snowflakes endlessly fall from the sky, I too was hoping for some way to escape this pit. I closed my eyes and imagined Dorothy’s ruby slippers on my feet, and wondered what it would be like to just click my heels and be…
anywhere but here.
I went to bed that night with a headache. The snowy weather forecast for the next week weighed heavily on my mind.
The next day the sun was out, but my mood was still in the dark pit. It was affecting everyone in the house. My husband came in from walking the dog and said “That’s it. We’re going out.”
I had asked the boys several times if they wanted to go play in the snow. The answer was always no. But my husband didn’t ask. He told them. End of story.
My mood got darker and darker through the 20 minute adventure of getting dressed for outside. Five sets of coats, boots, mittens, hats and snowpants had to be uncrumpled from the bottom of the closet from our last journey out together. Once outside, the snow was so deep that with every step I had to pull Lewis back up again.
With every step, he laughed.
And soon, I was laughing too.
My husband got out our blue plastic sled and put Howie and Lewis in it. He pulled them around the track he made in the yard and they squealed with delight. Gerry and I ran around behind them, trying to push each other down into the deep snow. A game I was winning, until my husband came up and hip-checked me right into a snowbank.
There I was. Stuck in a deep pit of white.
And behind me? A melody of giggles and calls for “do it again!”
Snuggling in bed that night, I asked Howie what his favorite thing was that day (as I always do).
“I liked playing with you. I love you.”
Won't bury himself in sand, but snow? No problem
I whispered back “I love you too.” And closed my eyes again.
I didn’t need the ruby slippers to remind me that there’s no place like home.
“Somewhere over the rainbow
Skies are blue
And the dreams that you dare to dream really do come true
Someday I’ll wish upon a star
And wake up where the clouds are far behind me
Where troubles melt like lemon drops
Away above the chimney tops
That’s where you’ll find me” – Over the Rainbow from The Wizard of Oz
January 26, 2011
“Blood is blood”
This was my Grandpa Leo’s version of “Blood is thicker than water”. He would say it every now and again, jokingly, when he would talk about his blended family. Even though I was related to him by marriage (he was my mother’s step-father), he always treated us as if we were “blood relatives”.
When Howie was diagnosed with PDD-NOS last year, I sent an e-mail to three of my cousins. All three have children who are just a year younger than Howie, and we visit with them quite often. I sent them this:
As you may know, last week we took Howie to a developmental/behavioral pediatrician for his evaluation, and today we had our follow up/diagnosis meeting. Basically it’s what we’ve suspected all along – she diagnosed Howie with autism spectrum disorder calling it PDD/NOS. Howie’s weaknesses show up in his social processing skills, mainly in terms of how he relates to others, his inability to read social cues, etc. She said that with intense therapies and immediate intervention, we have a good chance of helping him incorporate coping strategies into his everyday life so they become part of his daily routine.
While hearing the diagnosis hasn’t been all that easy for Tim or me, it’s been validating for us in a way because we’ve always known there was something going on with Howie, and now we can get him (and us) the help we need.
I’m filling you all in on this for a number of reasons, obviously the primary one being that you’re his family and I know you love him and want to know how he’s doing. I’m also letting you all know that because of all the hard work we have ahead of us, especially in the coming year, we’re going to have to restructure things at home to make life work better for Howie and us all. Kids like Howie crave structure, routine, and predictability, and Tim and I have to respect that and help him learn to function appropriately in different social settings. What it might mean is for at least the immediate future, changes to our daily routine will be difficult for us. I’m not saying that we won’t be visiting people or wanting visitors to come here, but within the confines of those changes in routine we’ll need to factor in some familiar routines for Howie and stick with them. I’m hoping that you’ll all understand and help work with us to make that successful.
So that’s it in a nutshell. We know things could be worse, and we know that all of these things make Howie who he is, and we can’t and won’t expect him to be someone he isn’t. While we aren’t looking forward to all the hard work we have to do, we are looking forward to seeing the positive changes in our family. Thanks for helping us get there.
I sent them this e-mail to give them the “out” – to let them know that if they didn’t want to spend time with us or have their kids around Howie, I would understand. It would make me sad, but I would understand.
To their credit, none of them stayed away. At all. And as I got brave enough to tell the rest of my extended family, their response for the most part has been the same. They are still here.
I know I’m lucky. And I know that this isn’t typical.
I know that for a lot of families struggling with special needs, their immediate and extended families aren’t the most understanding or supportive people out there. And for them, they’ve had to create new families of friends and caregivers who can be there when needed.
Which leads me to this. Two of my friends are about to go through some major changes in their lives. One friend’s husband is being deployed in two weeks. For a year. Another friend is having major surgery and will be off her feet for quite some time. Both friends have boys on the spectrum.
These are incredibly strong women who are about to change their whole parenting mindset. One will become both father and mother, picking up the activities that used to fall to her husband. The other will need to give up much of her motherly responsibilities in order to focus on her recovery and her health.
At our last support group meeting, we asked them how we could all help. What can we do to make things easier?
These were questions that neither one could answer right now. They didn’t know specifics about what they would need. They both just wanted to know that we all would be there if and when they did need us.
And as new members of their families, we will.
Friends are there to plan playdates, organize carpools, and bring over wine and chocolate. Family is there to do laundry, walk the dog, pick up prescriptions and be on call in the middle of the night for emergencies. Friends are there if you ask them to be, family is here when you need them to be.
It may not be “blood is blood”, as my Grandpa said. But sometimes, the family you create can be just as good or even better than the one created for you.
My Grandpa Leo
“Everyday(everday) should be(should be) a family reunion
We should speak
From the heart
And let love be the solution
Let us forgive (forgive)
Put the past out of the way(put the past out of the way)
No time to wait (no time to wait)
The time has come to give love everyday” – Everyday (Family Reunion) by Chaka Khan, Gerald Levert, Yolanda Adams and Carl Thomas
January 24, 2011
An octopus - all those arms for hugs!
I am so honored – I can’t even tell you. Thank you to whomever nominated me, and thanks to anyone who voted for me. When I started this blog last year, I didn’t start it to be inspiring. I started it so the words swirling around my head could get out somewhere, and not explode all over the next person to talk to me. I have been influenced and inspired by so many people, including my fellow award winners at Pancakes Gone Awry, I’m Just That Way and That’s Me, Hello.World, and Help! SOS For Parents. My fellow nominees (Chynna, Heather and Barb) are writers I read everyday, so check them out as well!
Speaking of inspirational, I’ve updated my blog list on the side of my home page. There’s a new list titled “You’re The Inspiration” (yes, I was a Chicago fan when I was younger, so sue me…) These are the blogs I read every day, sometimes twice. When I need a little help to get through the toughest moments, these writers get me through, with humor, grace and dignity. Many of them I now consider my friends. I’m sure I’m missing some – so don’t hate me if your blog isn’t there…yet!
And one more addition – at the top of the home page I’ve added a new page called “Cover Bands”. It’s all the other places where I write. Or have written. And hopefully will write again.
Again, a big thank you. I appreciate it more than you know.
“Once upon a time I walked an easy road
Didn’t think I needed anyone.
I could make it on my own
Never thought about tomorrow, just livin’ day to day
Never thought these clouds would come along
And bring me so much pain
When my world was upside down
I didn’t think that I could make it,
Reached out my hand for you
And you were there to take it” – Thank You by Christina Milian
January 21, 2011
“You haven’t lived until you’ve dissected a doughnut.”
Several weeks ago, I posted that as my Facebook status, and got a few puzzled comments. Most of my friends could not understand what I was talking about.
But you, my fellow parents of children with sensory issues, you understand. Don’t you?
Even Weird Al Yankovic can’t make my son eat. I’m talking about our difficulties with food at Hartley’s Life with 3 Boys today. Come check it out and don’t forget to vote for the SPD Blogger Awards while you’re there!
Click here for Eat the Doughnut!
January 19, 2011
Manny the Bear came home from preschool on Thursday. Manny was put down by the front door when we got home that day. And there Manny stayed, all nice and cozy, in his giant blue flower backpack. For four days.
Manny is the Build-A-Bear teddy bear that makes the rounds throughout the school year. Every week he is sent home with a different child in the class, complete with changes of clothes, a bed, books, and toiletries. The kids are supposed to take Manny around with them over the weekend like he’s a member of the family. And before he returns to school, the child is supposed to draw a picture of something they did with Manny, and then the parents write a description of the illustration.
Yeah. That didn’t happen.
This isn’t the first time we’ve had Manny visit us. Manny came to stay a few months ago when he was making his first go-around with the class. I was all gung-ho then. Howie and I took Manny out of his backpack, changed his clothes into pajamas, and set up his bed on the floor next to Howie’s. We even pretended to brush his teeth. Then I got all nervous that something would happen to this precious bear if he was on the floor (dog eating/shedding on it, Lewis pulling the arms off or swinging it around, Howie stepping on it during one of his several night-wakings, etc.). So I put Manny up on the dresser, and he stayed there until the weekend was over. That time the assignment was to take a picture of your kid doing something with Manny, so Tim and I hastily took some pictures the morning before Howie brought him back to school. One quick click and there’s Manny and Howie sitting in the chair watching a show. Assignment complete.
This time, I didn’t even read the book to find out about the drawing assignment until Sunday evening, when Tim asked me if we were ever planning on taking Manny out of his bag. Since Monday was a holiday, I figured we still had plenty of time.
Monday came and went. Manny stayed in the backpack.
Monday night I asked Howie if he wanted to draw his picture of Manny, since he had to go back to school Tuesday morning.
“No.”, came the answer. And I didn’t push it.
Tuesday morning I called the school and asked if we could keep Manny one more day.
Tuesday came and went. Manny stayed in the backpack.
But that bear was on my mind all day. I passed by that bag every time I went to the bathroom. Shouldn’t I at least open it up and give him some air? But then something would distract me and I’d move on.
As we celebrated my birthday Tuesday night, I asked Howie if he wanted to take Manny out to celebrate with us.
“No.”, came the answer. And that was that. Once this kid decides he’s not doing something (or eating something, or going somewhere), that’s it. You cannot change his mind.
This morning, it was time to return Manny. And still we had nothing to show for his stay here. I pulled the binder out of his bag (still leaving Manny in there) and dragged Howie over the to table.
“We have to draw a picture of Manny. Let’s draw him with birthday balloons for my birthday.”
(Tim said I should have told Howie to draw a stick figure of himself next to Manny’s bag. In hindsight, not a bad idea.)
“But it’s not your birthday anymore!”, cried Howie, which sent him into a tizzy of complaints about not having had any cupcakes for my “party”. And cries of sadness over not getting any presents for my birthday.
“I’m going to draw squiggle words. It says Happy Birthday Mom thanks for stealing someone else’s birthday.” (please don’t ask me what that means) And he proceeded to take the crayon and just draw wavy lines in the box on the paper. And then he turned to me and smiled.
“Howie, the directions on your homework say DRAW a picture. It says it right here. That is not a picture”. I handed him a fresh piece of paper.
“Stop trying to make me hate you!”
And with that, we were done. I don’t know where he’s heard those words before, but he pulled that script out just at the right time. I closed up the binder that had all the other kids’ pictures of Manny and silently put it back in the backpack. With Manny. Howie ran off to run laps around the house with his brother.
His teacher happened to call at that moment about something else, and I shared the story of Manny with her. She told me not to worry about it, they would ask him at school if he wanted to do it there and if not, it was no big deal.
No big deal. To them. But this was clearly about me.
I felt guilty that Manny had stayed in his backpack all weekend. Our life is so chaotic that adding one more member – even a stuffed furry one – would have thrown me over the edge. I can barely get my kids dressed some days. Dressing a bear was not going to happen.
I felt guilty that we didn’t lead the kind of life that lends itself well to a drawing. Other kids had Manny going to work with their dads, visiting restaurants, and sleeping in their beds. We didn’t set foot outside the house all weekend long. Manny didn’t set foot outside the bag.
I felt guilty that I was longing for the kind of life where my kid could sit down and draw a picture of something wonderful that we all did with his classroom bear. This is a kid who has just started to hold a pencil the right way. I started to panic about homework – even though real homework is still years away. I already battle with my oldest about it. I can’t even imagine how challenging this will be for Howie.
And I felt guilty for making him feel bad about what he did do on that paper. We had nothing to draw for Manny, so making something up made no sense to him. The wavy lines represented words, and that’s what he wanted. What was wrong with that? Nothing, except that I didn’t want the other parents to see his squiggles. Because I didn’t want them to wonder why my kid couldn’t draw a bear.
I can write all I want here about how I’ve come to terms with Howie’s diagnosis, and I’m okay with it all. But sometimes when I see what other kids and families can do, I’m reminded of how different we really are.
Howie clearly knew what he was able to do. For me, the battle over what we can and can’t do as a family will rage on for years to come.
“People I know, places I go, make me feel tongue-tied
I can see how people look down, they’re on the inside
Here’s where the story ends
People I see, weary of me showing my good side
I can see how people look down
I’m on the outside
Here’s where the story ends
Ooh here’s where the story ends” – Here’s Where the Story Ends by The Sundays
January 17, 2011
Imagine my surprise when I got the e-mail yesterday.
My blog has been nominated for an award – the 1st Annual SPD Blogger Awards. From Hartley’s Life With 3 Boys.
It’s no joke to say it’s an honor just to be nominated. It’s very true. I started writing this blog because of Hartley and the other amazing writers in her SPD blogger network. I found her site through a link on another online essay about sensory processing disorder. At the time – a year ago – I didn’t know that anyone else had kids like mine. I felt alone and overwhelmed.
There, on her site, was a long list of blogs. Writing about the exact things we were going through as a family. And suddenly, I wasn’t so alone.
I’m nominated along with some of the most honest, most heartwarming blogs I’ve ever read. To whomever sent in my name, I thank you.
Please come vote for me (twice a day!) from now until midnight on January 22nd. I’m in the inspirational category along with Brotherly Love, Comfort in the Midst of Chaos, and The Gift Blog.
Vote For Me!
Once you vote, check out some of the other blogs listed. They are my favorite writers and they are all awesome, inspirational, funny, resourceful and new.
Thank you for voting and for being such supportive and understanding friends.
January 17, 2011
Posted by Alysia Butler under My Three Sons
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It’s my birthday tomorrow. So I’m asking you to check out my post at Hopeful Parents today, as a present to me.
I’m “tweeting” myself from the future.
(you cannot mock me for this, because it’s my birthday. Almost.)
Please leave me a comment there (or here) about your hopes for the future on this Martin Luther King Jr. Day.
Click here for When I’m Sixty-Four
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