Post It Note Tuesday (Holiday Edition)
December 22, 2009High Friends in High Places
December 21, 2009Woo Hoo! I’m IN!!
One hour in the pediatrician’s office proved to me that my YEARS of working as a pediatric nurse for this particular practice may have paid off in more ways than one.
Background: For fifteen years I worked in a large and growing Pediatric practice. This group specialized in well child care as well as sick child care. We had a little ER and were open each night until all the kids were taken care of. Night after night we’d work until 11:00 or later if we had to, making sure all the sickness and illness….stitches, breathing problems and poop issues were resolved. This group of physicians also specializes in ADD/ADHD and other behavioral issues (above and beyond the norm for MDs).
My life as a nurse there was wonderful. Nights spent torturing kids with immunizations and breathing treatments. Inserting catheters, IVs, stitches, throat cultures and ear currettes. Giving out stickers, hugs, kisses and cookies. I spent weekends with a beeper on my belt answering calls from parents worried about their sick babies or out of control teenagers. I saw my own patients for Asthma/allergy teaching. Now…I’m being paid back.
One year, I left that office and went to work for a local non-profit outpatient facility called Philhaven. I worked for a wonderful physician treating kids in intensive group therapies if they weren’t able to mainstream into school. I dispensed meds and advice to children with ODD, ADD, ADHD, PDD-NOS, Autism, Asperger’s, aggression and anger. Then I went back to the relative calm of the crazy pediatric clinic/office/home.
Today I took my son to the pediatrician at the above mentioned “office.” I haven’t been on staff there for nearly four years. The doc. I saw was one I worked with many nights. We like each other and respect each other’s clinical skills. This was the man who diagnosed Colin with SID nearly 6 months ago. Since then, his recommendation to a neuropsych resulted in an Asperger’s diagnosis.
For an hour I sat talking with him. Colin was there and happily played with his Hotwheels cars making tracks and trails over doc’s pants, shoes, folders and computer. Doc complied, occupied and laughed with him. (love this man.) He concurs with the AS diagnosis.
A few weeks ago, he asked me to call a specialist, who also happens to be the psychiatrist I worked with at Philhaven. Apprently this man has recently opened a Center for Autism and Behavioral Disabilities about five minutes from home. I called them (managed to drop that I’d worked for head physician in the past but that didn’t work) and was put on a waiting list. Next POSSIBLE appointment? August, 2010.
I want to go there. Colin NEEDS to go there. I need to go there to find out how best to parent this guy, but August?????? Really?!
So today, pedi doc says…”No meds unless the psych at Philhaven says so. I don’t think we’ve got ADHD, but maybe, maybe some anti-anxiety meds will help with school.”
I say: “But I’ve got to wait until August, cause Psychiatrist (name omitted) has this waiting list. I was hoping that because he knew me and I worked with him, that someone would be impressed and I’d have an ‘in.’ “
Him: “You have an IN with me, girl. This boy needs help now and so do you. I’ll call Mike today and you’ll have an appointment so fast!”
Yeah!!!
High friends in High Places.
Extra Measure of Grace
December 21, 2009Wow! Almost a week since I last posted something on this fine blog! I feel a little starved…like an addict looking for a fix. I have been reading blogs, just not writing anything. So, now I’ll probably spew out more than one post to make up for it.
That’s because…it’s been stimulation overload around here. Way too busy around here planning and prepping for Christmas, all the while trying to maintain order and control in a house ruled by disorder. Problem is, one of our children demands a constant, predictable routine and if he doesn’t get that…well…hell….
It started last week with Christmas anticipation. Everyone’s excited. Colin has no idea why he’s excited except that Christmas is coming (which means presents and “secrets”) and all the lights in people’s yards are really fascinating. There is not much structure to the Kindergarten day lately. Coupled with the fact that his teacher was off for two days and he had a substitute, well, that mean that the tailspin began last week on Monday! If ONE, LITtle thing is out of sync, there is a literal Tailspin. Butt in the air…spinning in circles. Yep.
Here’s the order of things during the week:
1. Wake up at 7:00 a.m.
2. Eat breakfast.
3. Brush teeth.
4. Get dressed (and if you do it all by yourself, you get to mark your chart).
5. NOW you can watch cartoons.
6. 7:55 walk to the bus (but at least five minutes before that, you’ll have to struggle with your coat, hat, gloves, backpack and turning OFF the TV.)
Here’s the order of things on the weekend.
1. Wake up (but don’t get out of bed until someone comes to tell you it’s okay. If you’re awake before ’someone’ then just kick your legs against the wall long enough and loud enough that they’ll hear you and come get you up.)
2. Whatever. Really. Whatever. If it’s Saturday or Sunday, you can do “whatever” until ’someone’ is awake enough to feed you breakfast and then the weekday rules start.
Here’s the thing. We got some snow. About 13″ of snow on Saturday. Hence, we were stuck in the house Saturday and most of Sunday doing ‘nothing’. Well, we made cookies, decorated the tree, listened to Christmas music, played in the snow…whatever the mood dictated. So Colin had a very, very unstructured weekend. RED FLAG number ONE.
This morning…”Two Hour Delay with Modified Kindergarten!” Meaning, he won’t go to school at all. If he did, he’d get there about 15 minutes before I’d have to pick him up for a doctor appointment and he’d miss the rest. Easier to keep him home…maybe.
One hour of kicking, screaming, sobbing, rolling around and generally tantruming (is that a word?) because “It’s Monday! It’s Cycle Day 3! It’s school!!!” He does this thing with any transition that doesn’t go his way. Then he ’shakes it off’ by literally shaking his whole head around and announcing “I’m done now.”
We went on to the doctor’s appointment and on with our day, but what a morning!
When Colin was diagnosed with Asperger’s Syndrome, Andy and I had about an hour’s time to talk to the Neuropsychologist who worked with him. More than anything he said or recommended, I remember this part.
He said that Colin will always struggle. It’s our job to teach him how to cope. He will always behave differently, it’s our job to help him know what’s okay and what’s not. It’s our job to discipline his misbehavior, but….BUT…he will always need “an extra measure of grace”.
That hit me hard. No professional psycho anyone had ever suggested that my child was human before now. But this man understood that Colin needed a little leeway…a little grace sometimes. Today was one of those times.
Yep. Yep. Yep.
Sticky Note Tuesday
December 15, 2009
Life, laughter and the pursuit of silliness brings STICKY NOTE TUESDAY. I love reading these things and now I’m writing them…
Learning to Give…Priceless
December 14, 2009Each Christmas, we try to teach our kids about the gift GIVING part of the exchange tradition and not just focus on the GETTING part. Colin had his first “Holiday Store” experience at school last week and it was really hard for him to understand the need to buy for other people. Most 5 yr-olds have trouble understanding the joy of giving, and kids on the Austism Spectrum have an even tougher time. But, maybe, just maybe…he’s getting the gist of it.
From 10:00 a.m. until 3:30 p.m. Erin and I cleaned out, cleaned up and generally fumigated her bedroom. Nice way to spend a weekend. Yes, my pre-teen daughter is a slob left-brained person who feels that organizing (or even putting away) her things is a waste of time. However, before anymore stuff invades our home, she had to figure out what she already owns and where it all is.
On the floor next to her bed she has a small, four octave, battery-operated keyboard that she bought with her own money a few years ago. Now that she’s graduated to the real piano in the dining room, the keyboard is rarely used unless Colin is in her room and then he plunks out tunes he’s heard. He loves that thing and is starting to ask for piano lessons of his own. Erin knew how much he enjoyed this thing and she decided to give it to him rather than donating it to Goodwill (where a majority of her stuff was headed). She took it downstairs and put it in his room for him…he was SO excited.
About an hour later, I saw Colin walk up the steps and go into Erin’s room. I heard them talking awhile and then, back down he came. When I went up to check on her cleaning progress, she was standing open-mouthed in the doorway.
“Mom, guess what Colin did!”
“What?”
“He brought me two of his favorite Hot Wheels cars. He told me he wanted me to have them so that ‘You’ll always remember me.’ “
Priceless.
96 Mazes in 45 Minutes
December 13, 2009Yesterday was chaos in our house. Andy and a friend of ours (who shall remain nameless to protect his identity but will forever be my new BFF) begain tearing out and replacing windows in our house. This Old House, 80 years old or so, had all it’s original windows. Full of character, individual window panes, three large bay windows…also full of holes, rot and uninvited bugs…the windows HAD to go!! This place is freezing in the winter and so HOT in the summer. The kids who live upstairs in the dormers tell me their rooms are habitable, “weather permitting.” So Andy spent the day with BFF tearing out and replacing as many windows as daylight allowed. (Ten down…eighteen to go).
Liam and Erin had back-to-back basketball games after lunch. I’d been preparing Colin for a couple of days for the newly begun basketball season. Last year, he went to all the games but spent each hour with his hands over his ears in fear of the buzzers and ref. whistles. After a few weeks, he figured out how to watch the digital time countdown each quarter so that he’d know when to put his hands over his ears for the buzzers but the whistles are unpredictable. As soon as we’d pull in the parking lot, his hands were cemented to his little ears. One time I brought Smarties (his favorite candy) along to a game to try to coax his hands off his ears. Instead, he lined the Smarties up on the bleacher in front of him, covered his ears with his hands and bobbed his head up and down picking up each Smartie with his tongue!
So…he opted out of going to the first game. I left and he stayed home with Daddy and BFF…and hours of television to keep him company.
Erin played great! Didn’t win the game, but was very close. Dashing home to drop her off before heading on to Liam’s game I (literally) ran into Colin in the living room. By now, he’d probably watched five hours of TV or so (all the while running his trains in circles in the living room.) I can’t blame Daddy for letting the TV babysit…after all, he had windows to put in and I was gone. But, this kid was bored!!!
“I’m Really Tired Out” he said. Code for “I don’t know what to do.”
ME: “Do you want to go to Liam’s game?”
HIM: “Sure…I’ll go. Can I take a snack?”
ME:…”Um, yes. But there will be whistles and buzzers.”
HIM: “That’s okay. I’m really tired out.”
So, boredom conquered fear and off we went. He did really well at the game, too. Only freaked out once! Not bad. And Liam’s team won, so Colin proudly ran onto the court and interrupted the victory huddle to give his proud teenage brother a hug. Liam, in all his graciousness, high-fived and hugged back in front of his whole team.
Once we got home, Colin couldn’t figure out what to do with himself. Typical weekend non-ritual hyperactivity. If only there was school 7 days a week, then he’d know what to do with himself. That schedule makes sense. Sleeping in, lounging around, lolly-gagging and generally being lazy don’t compute in his little Aspie brain. What??? What???
About 5:00, he bounced (yes, bounced. Not much walking…usually running, bouncing, crawling or slithering to get from place to place) into the kitchen. Sat down at the island and announced, “I’m BORED.” First time ever he had voiced that feeling.
I knew what he wanted. Soemthing to do that he really liked to do. I said, “Okay…(sigh)…I have a surprise for you.” Walked back to the hiding place in my closet where all Christmas presents are stored. Opened the Target bag and took it out. It was supposed to be a gift under the tree, but since I’ve gone through five of these things in the last month, I figured I’d have to give this one up before Christmas. Walked back to the kitchen with surprise hidden behind my back. Popped it out and showed Colin.
“OOOOHHHHH!!!!!! AAHHHHHH!!!!!” Bounce. Bounce. Bounce. Squeal!!
A book of mazes. 96 Full color mazes. Ages 6-8. Hours of entertainment for your school age child!
Colin opened to page one. Smashed down the center so it would lay flat. ”Light up Pen” in hand…ready, set, go!!!!
Half hour later he put a bookmark in the place he stopped so that he could finish after supper. The minute his supper (which he didn’t eat) was over, right back to the book.
Finished it in less than 45 minutes. Hours of entertainment….my ass!!! PFFFTTT. False advertising! I want my money back! 96 Mazes for kids older than him finished in less than 45 minutes.
He’s whined all day today for another maze book. If I don’t make it out to find one tomorrow, I’m in deep, deep DOO DOO when I pick him up from school. Trouble is, they don’t make too many maze books for kids.
Maybe I’ll start a benefit drive…locate mazes for me please at all costs! Top dollar paid for mazes! Maybe I’ll have to learn to draw mazes, (yikes!).
It’s truly one thing that he loves and loves and loves to do. I’ll go crazy, I’m sure, finding mazes that challenge him as he grows older.
But I’m going to laugh out loud and cheer and pump my fists when he lands a job as an architect, city planner, math teacher or neuropsycholgist. Now those are some jobs with mazes to figure out, babe.
Imagine Yourself as Someone Else
December 9, 2009
Autism is a puzzle with more curves, corners and pieces than any of us know.
One of the hardest things for people with AS is empathy. Coupled with the inability to appropriately initiate social interactions, children with AS have little understanding of how their actions and words affect others. Most neuro-typical children struggle with it, but can be easily taught to imagine how someone else feels. AS kids can’t imagine that.
On the other hand, all relationships are reciprocal. So, those of us who interact with someone that has AS need to also be able to empathize with how THEY are feeling or seeing or why they are behaving the way they are behaving. Only, we can’t. We can’t imagine that.
Imagine that sounds are painful. The vacuum cleaner sounds like a fire alarm. The fire alarm sounds like a jet plane. The water gurgling through the radiator stops you from wanting to play in your room alone.
Imagine that being in a crowded room or restaurant makes you want to spin in circles and hide under the table. If someone strange sits near you, you won’t be able to finish the meal. You’d rather just make loud silly noises to make yourself feel better.
Imagine that only six or seven foods taste good to you. Maybe it’s not the taste…but they feel and smell safe, so you’ll eat them. Imagine that you could not try new foods, even if they are pretty ones, because you don’t know them.
Imagine that you can’t understand what people’s faces are saying. They get all twisted up, twitching, smiling, frowning all the time they are talking. They want you to look them in the eye, but if you do that you won’t be able to concentrate on what they are saying. It hurts to look someone in the eye. Sometimes you can’t hear the words because you are too busy trying to figure out the look on their face.
Imagine that collars, tags and zipper pockets make your skin itch. Your Mom bought PJs and the “out parts” of the sleeves are too tight on your wrists. Makes it hard to fall asleep.
Imagine that you couldn’t tell when someone didn’t want you to touch them anymore. You like touching people’s clothes or licking them or blowing on them or just getting as close as possible. Why won’t they let you do that? It’s how you tell someone you like them a lot. How else are you supposed to do it?
Imagine that you can’t answer open-ended questions without anxiety. So instead, it feels better to just say “AAAHHHH!!!!” Why does everyone want to know if I “like school” anyway? I don’t know.
Imagine that making changes or transitions from one thing to another is really, really hard for you. All you need is a little warning that something else is going to happen next…but most people won’t do that. Imagine that taking an alternate route home to avoid traffic would make your world spin out of orbit for a while and you’d cry a lot about it.
We could all use a little empathy.
Smells Like Sunday
December 5, 2009We all have our own way of ordering our world. Each of us has secret code in our heads that allow us to figure out where we are fitting that moment into the greater spin that earth is in.
As a child, I had some strange ways of figuring out language. (Maybe I’m a little more like Colin that I realize). Nouns were the most important letters in our alphabet. Letter “E” was king and should begin each word. After that, each noun, in the order that they appeared originally. Then, the bad consonants in the order they appeared in each word. This drove my mother crazy since I would ride in the back seat of the car mindlessly spelling words on the billboards as we would pass. Only, I was doing my “thing” with them. Finally I had to explain it to her (and SILLY her for not figuring it out on her own.) I think I was four.
For example: “Restaurant” is really spelled “eauarstrnt”. The word “house” is “eouhs”. “Beetlejuice” should read “eeeeuibtljc” (that was a fun one!).
I also believed that all dogs were boys and cats were girls.
Mondays were blue, Tuesdays were yellow, Wednesdays were green, Thursdays…red. Friday? Green again. Saturday was black and Sunday was purple. That still holds true sometimes if I don’t stop myself.
A few weeks ago, I was walking Erin and Colin to the school bus stop. It’s only about a two-minute walk. We hold hands and talk about what the day holds because if Colin doesn’t know what to expect, then he’s really anxious.
The day wasn’t hot or cold. No rain, no sun, just sort of an average fall day. It was a Wednesday morning and nothing special was going on in our neighborhood that day.
“It smells like Sunday, Mommy.”
“Really”
“Yes, it’s Wednesday, but it smells like Sunday.”
He actually stopped and looked around for a while. Whatever he was looking for wasn’t there, but his nose could pick it up. Maybe someone was burning a fire, maybe there was a roast in an oven, maybe no one will ever know what it was.
“Okay, it smells like Sunday. Is that okay?”
“Um, yeah, I guess.”
He walked a little slower to the bus that morning…looking around him the whole time as if anticipating something new. Like, maybe we should be getting ready for church instead.
I’m okay with Sunday having a smell, dude. As long as it’s okay with you that I think it’s purple!
heartbreak and mommyness
December 3, 2009
Hiding away
Many days I feel my heart lurch in my chest. Really? This is what I signed up for?
Liam was my first biological child and there is no other feeling in the world than holding a helpless newborn in your arms. Taking him to the mall at Christmas that year nearly brought on anxiety attacks. I was sure someone would snatch him out of his stroller…he’s flimsy and floppy and wouldn’t be able to put up a fight…why is that man staring at us?
Sitting in my overstuffed armchair during the first month of his life I would sing “You Are My Sunshine” and weep when I got to the part of “Please don’t take my sunshine away.”
My first look at the fragility of new life and the dependance that this child would have on me for all his needs. I could do anything to him and he couldn’t fight back. My mother told me then that I had just opened my heart up to a world of love and a world of heartbreak. Shattered my heart into a million pieces.
Since then, he’s become an “A” student, great athlete, super support and one of my best friends. His sister, Erin, came along and managed to add a little girly to my life. I love her immensely.
That was over 13 years ago. I’m a seasoned MOM, right?
Now I watch Colin walking around the earth. All the feelings I had for Liam when he was born reared with each child, but poor Colin wasn’t number one or number two, so by the time he showed up I managed to sleep through the night pretty easily without anxiety. He slept next to my bed as an infant out of convenience rather than fear. I’m a master at nursing babies while I sleep. I actually left him alone in the other room while I cooked…never did that before. I assumed that with this child nothing could make me worry. Been there, done that…wrote the book.
Not so fast.
I listen to him more intently than ever. Each conversation we have is peppered with wierdness (for me, not him.) The desire to hear him tell me how is day was…what he liked…what bothered him…what made him laugh…I can’t tell you how I’d love to hear those things. Instead I get a play-by-play of certain aspects of his day and I’m made to guess which shaped table said things took place on. “Learning Stations” are his favorite thing but he’s really mad cause he has to miss some of that every day cause he’s pulled out to read to “some lady who wants me to tell her stuff.” Other than that, not much happens.
Or, he hides under tables with a grin on his face.
As he walks through his day and perseverates on certain things, I wonder if I’ll be able to channel that intelligence, that obsession into something wonderful and fun. I wish he’d “play” with me rather than order me to perform certain tasks that make his world right. The amazing Thomas the Tank Enginge set up in his room is less of a toy and more of a stim.
He’s flimsy and floppy and really in need of someone to guide him.
Throughout the day he runs to me for physical contact or validation. Bazillions of hugs and kisses. Today really sucked for him though. He woke up at 4:00 a.m. cause our back door was banging in the wind. Daddy’s away, so he managed to weasel his way into bed with me. At 6:00 I got up to get breakfast for Liam, so little shadow man followed me out to the kitchen. Then, he had a substitute for school. Not normal routine. Not great.
But right now, his big brother Liam is dressed in a bathing suit giving him a bath. It’s pretty cool. My worry for the next few years is that Colin might be bullied. He’ll be riduculed and teased. I’ll be fighting the teachers and schools every step of the way to make his academic learning a success. Therapies, teachers, counselors, doctors….
As Colin walks around I again feel that little lurch in my chest. It hurts. It’s not my heart breaking into a million pieces this time.
It’s my heart walking around outside of my body instead.
Smell My Blanket
December 2, 2009Over the past few weeks, I’ve noticed Colin trying to figure out how other people are feeling. It’s obvious to him when someone yells or gets loudly angry that they are not in a good place with their feelings, but it is the more subtle irritation, frustration or sadness that he’s studying. He doesn’t seem to care too much about any of it unless he feels that he may have done something to cause a shift from happiness to anything else. That’s when he starts to think about it.
One of the hardest parts of Asperger’s is the inability to empathize with someone else. Colin will understand that when he feels hurt, sad or angry that he doesn’t like it. However, he is unable to make the connection that someone else with those feelings isn’t feeling good either. For example, he doesn’t understand that by walking up and smacking his brother to show him how much he loves him actually physically hurts and isn’t appreciated. But lately, he’s been starting to try to figure it out.
A few weeks ago, I made a big mistake. I had forgotten to pick something up at the store and had to hurry to get it done before the older kids got home from school. I didn’t give Colin his usual time warning that we were heading out, instead I did what most parents can do with a typical child and said, “Hey buddy, we gotta run to the store quick. Go get your coat on!”
Big boo boo.
He burst into tears and threw himself on the floor. So, naturally I got irritated with this behavior.
“Come on, Colin. I’m counting to 3 and if I get there, you will not get to watch TV again today!”
“NO!!!” He begins to kick the floor and heads into a full out tantrum.
I literally picked him up by the arm and nearly dragged him into his coat. Forced him out the door and into the car where I angrily yelled at him that he had disobeyed and I was NOT happy.
Now, this is not the way to treat any child. Colin’s reactions came from the fact that I had not prepared him for the change the way I needed to and then I lost my temper because of that. So, it was all my fault.
But, as I got ready to shut his car door he tearfully said, “Mommy, I have something that might make you feel better.” And planted a big fat kiss on my cheek.
After apologizing to him for losing my temper and for not giving him enough time to prepare for the change in routine, I calmed down enough to realize that this was the very first time ever that Colin had done something like that. He has learned to apologize for things he has done because we taught him to do that and it is a “rule” so he follows it. Never before had he done it with the intent to make someone else feel better. I sat and looked at him for a few minutes before he reverted to usual Colin and said “Turn it up and get the map!” (Always must have GPS going during a drive). For a few minutes, though, he’d had quite a different and softer look to him.
I saw it again today.
Colin has a flannel blanket with baseballs and bats all over it. His “Baseball Blanket.” Soft and warm, this blanket has covered him in bed since he was born and he still sleeps on top of the covers with only the Baseball Blanket on top of him. Sort of like his safety net, he carries it from his room to the living room every morning and back again every night.
Before heading off to school this morning, I asked Colin to turn off the TV. He did so willingly and then threw the remote control onto the couch. It missed, bounced and hit the floor hard. He immediately grabbed it up, looked at me and said “Sorry!” I wasn’t angry or irritated but I must have made some kind of gesture that he interpreted as being upset at him. Suddenly he was running at me with the Baseball Blanket and shoving it in my face.
“Do you want to smell my blanket, Mommy? It’ll make you feel better. That’s what I do!”
What a challenge lies ahead in teaching this young child how to know what others are feeling. How do you teach empathy to someone who doesn’t understand his own feelings yet? We will need a lot of grace and patience as we work this out with him.
But we’ll definitely have the Baseball Blanket along for the ride in case we need a good sniff to lift our spirits!
