Post It Note Tuesday
12 Jul 2011 2 Comments
in asperger's syndrome Tags: ASD, asperger's syndrome, autism, children, family, love, sticky note tuesday, the kids are alright
I’m almost out of Tuesday and haven’t done this for awhile…but it’s my favorite blog day!
And if you love the stickies…go read more or make your own:
We All Need to be Understood
01 Jul 2011 1 Comment
in ASD, asperger's syndrome, autism, children Tags: ASD, asperger's syndrome, autism, children, empathy, love, sensory integration, sensory integration disorder, smell
After my little vent yesterday I thought it would be good for me to repost this 2009 blog entry just to keep it in perspective.
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.
Sometimes My Brain Hurts
30 Jun 2011 Leave a Comment
in ASD, asperger's syndrome, autism, child, children, family, stimulant medications, Uncategorized, Worry Tags: ASD, asperger's syndrome, Asperger's, autism, family, mom is tired, mommy, motherhood, parenthood, petting zoo, tactile stimulation, the kids are alight
I’m tired. Not the sleepy kind of tired…or the exhausted kind of tired. My brain is tired. It hurts. So much going on right now…so much emotional crap being thrown at me from every conceivable place…well not “crap” but y’know.
Someone asked me yesterday if I was really glad that summer was here so that I could have my kids home with me. After I actually laughed out loud I replied, “Yes and no. I’m not a great stay-at-home mom.” Deep down the honest explanation would have been way too hard for her to understand and I didn’t feel like trying. Not everyone cares to know.
Colin has been off his meds for about three weeks. Due to, in part, the fact that he’s scheduled to see his Pedi for a med check and I always take him off a week ahead of time so that we can discuss the differences on/off the stimulants. Butttt….I had to cancel the appointment and am playing phone tag with the office to get a new appointment time. Meanwhile…Colin begins the “Big Spin”. The Spin that doesn’t end.
He exhausts me. Without meds, C is on a constant quest for stim. Tactile stim is his gig. While most mothers would die for the endless hugs and incessant kisses they just make me sad because I know why he’s doling them out. Him and Albert…the fearless stuffed dog who tells me more about Colin than Colin does. Albert goes absolutely freaking everywhere with us!!
“Albert wants a kiss”
“Albert is lonely, will you sleep with him?
“Albert will miss me, so can he ride in your car today while I’m away?”
Albert was at the petting zoo with us today for exactly nine minutes before I’d had enough of Albert needing to feed the ducks one pellet at a time. We decided Albert was tired and should nap in the car for awhile. Then I figured out that Albert is part of his tactile stim need. Once Albert was gone, C decided that putting the little duck food pellets in between his bare toes so that he had 8 pellets stuck in his own little webs was the new “good feeling”. I saw someone walk by and grin while he did that…like it was cute. Maybe to them…to me all I thought was “Please God. Not again.”
The most exhausting thing is the non-stop one-sided conversation. A diatribe on Mario or Sponge Bob I can handle about once a day. Right now…it’s constant. I’ve taken to telling him that he’s got three minutes to talk or he gets to tell me three facts about whatever the current obsession is. (It’s a new rule…should work right?) And then my heart breaks because I realize that we’ve talked all day long with each other and not once has he initiated a conversation that had anything to do with anyone else’s interests or feelings. He’s just researching the facts, Ma’am.
I try to find the fun and crazy things about this Asperger’s Beast most of the time. There are many of them…we giggle a lot and love this little man to death.
But tonight I’m tired. My brain hurts. I need a little bit of a vent…thank you very much.
The End of Summer
13 Aug 2010 4 Comments
in Uncategorized Tags: ASD, asperger's syndrome, aspie, autism, children, motherhood, routine, summer
School starts in two weeks. That means I have only one more true week of summer vacation. “Practice Week” begins on Monday the 23rd. Reacquainting Colin with a more rigid routine is not something I’m looking forward to, but it has to be done. When summer started, I told myself that keeping him in his normal morning routine (get dressed, eat breakfast, brush teeth, take meds before tv or games) would be critical. Also, adhering to a regular bedtime would make it easier on him so he wouldn’t be tired during the day…which brings Tigger out in full force. Did any of that happen? Um…no. The only routine activity he’s clung to is reading the Sunday comics. “I only like the Sunday ones because they have color. The ones on Monday, Tuesday, Wednesday, Thursday, Friday and Saturday are not in color and that means I don’t like them. They don’t make sense without the color.”
I think it took all of two days for me to sink into the joy of sleeping in and letting the kids get up without me. Colin won’t walk down the hall to the living room alone if no one is out there…so on mornings that he’s up first…he crawls in bed with me and turns the tv on. Actually, he doesn’t crawl in. He does this wild sort of run-jump-plop-scramble maneuver. Then, because he hasn’t had his meds yet, the stimming begins. That involves rubbing Mommy’s arms, playing with my elbows, touching my legs and putting his face two inches away from mine and asking “When are you getting up?” Not all that relaxing for me, but still.
The dumbest thing I did was not enforce his morning routine of getting dressed before anything else happens. By the end of last school year, Colin was finally at the place where he would get his clothing, socks and shoes on independently. Then, eat breakfast…brush teeth and THEN he could watch tv if time allowed. Guess what…he is still in his pjs as I write and it’s 10:30 a.m. So, Practice Week is gonna be tough. Adding to the stress is a new bus schedule, new bus route and new bus number. When I told Colin about this change…”I’m STUPIFIED!!”…was his only response, followed by flapping and spinning. Ugh.
Clearly I am not winning the Aspie Mother of the Year Award. But guess what? We had a fun summer! We stayed up late, swam in the dark, chased fireflies and ate lunch on the trampoline. We laughed a lot and grew a lot. So, my last official week of summer will be more of the same. I promise.
And only when I’m all happy and tired out from playing will I get back to filling out forms, scheduling therapies, IEP meetings, TSS set-up and enforcing routine. For now, we’re all just having too much fun…and I’m fine with that.
When Red isn’t Really Red
06 May 2010 Leave a Comment
in Uncategorized Tags: ASD, asperger's syndrome, autism, children, coloring, crayons, family, ice cream, motherhood, raspberry, sensory integration, taste
I would like a word with the Crayola Company. Frankly, any maker of crayons, markers or colored pencils. I’d like to invite them to my home to observe the frustration Colin experiences when he’s required to do a coloring activity. Why? Because not one crayon in the box is labelled “Red”, “Blue”, “Green”, “Yellow”, “Brown”…you get the idea.
Colin doesn’t like to color for fun. His preferred style is to scribble with a Black crayon. However, when homework requires him to “Color the square shapes red”, for example, he’s more than willing. It’s required, therefore it’s a rule and he must follow it. (One benefit of his typical AS personality.) Because his fine motor skills are diminished it takes a LONG time to get the coloring to stay within the lines…but he’s meticulous in that task. What would take a neuro-typical child three minutes to complete takes Colin ten. IF he can find the right colored crayon to fit the job.
This is where my gripe with those crayon companies comes in.
Colin’s literal brain can’t use “Posh Pink”, “Rusty Brown”, “Blue Green” or “Amber Yellow” when his instructions call for pink, brown, green or yellow crayons. Even “Light Blue” won’t work if the required color is simply BLUE. We’re working through it … like we’re working through everything, but it’s not easy. He feels like he’s not doing his homework right.
I do love all the beautiful colors in a great big box of crayons…it’s just not Aspie friendly and I’ll be darned if I can find a normal box (other than with the kids meals at Applebee’s) of crayons without the extra hues thrown in.
Yesterday, I took Colin and his best friend (Yeah! he has one!) to the petting zoo and then for ice cream. Colin ordered his typical “Green” ice cream (read mint-choco-chip) and I got strawberry. He looked at my dish and uncharacteristically ventured outside his zone and asked if he could taste my flavor. He liked it! Cool…
HIM: “Mom, next time we come here I will ask the persons with the ice cream for a medium cup of strawberry…and then the time after that…which will be two times from now…which is the third time…I’m going to try the raspberry ice cream in a medium bowl.”
Well, okay I thought.
Later that evening he repeated this agenda to Liam at the kitchen counter while they ate dinner.
Colin: “Liam, I had green ice cream today…next time I go to the petting zoo I am going to have strawberry…I tried it and I think I like it…then the third time I go I will sample raspberry.”
Liam: “Cool buddy. It’s good to try new things. You want to try raspberry huh?”
Colin: “Yes, Raspberry is darker than Red. I don’t know what color Raspberry really is, but if I taste it, maybe I can find out and then I’ll know.”
There ya go, Crayola…just flavor the off-the-wall hues in the box and we’ll be fine!
Chasin’ the Blues Away
11 Mar 2010 2 Comments
in asperger's syndrome, autism, children, Depression Tags: asperger's syndrome, autism, blues, family, funk, IEP, piano, spring, the kids are alright
Beautiful, beautiful, beautiful day! The last remnants of snow are melting away and the sun is shining. Once again, I awoke to birds singing outside my window…a sure sign of Spring. My iris and daylilies are poking their noses through the dirt and I spy buds on the lilac. My impatience at the cold and snow is turning into impatience at having to wait a few more weeks before I can begin to dig in the dirt.
I’ve been in a little funk lately. Nothing major, just minor exhaustion and frustration aimed at the hurdles and hoops I’m jumping through to get proper support for the C man. I cannot understand why I must apply for Medical Assistance (the application for which is daunting on its on) before being able to find full-time classroom support from an ouside agency. They will also be providing the wrap services of home help and hooking us up with the right therapists.
My mind’s eye is seeing the three more evaluations by psychologists, speech therapist, occupational therapists, psychiatrist…and the mountains of paperwork involved.
OT, PT, IEP, SLP, MA, TSS, MD, PsychD…it’s like Alphabet Soup! Oh, and let’s throw in a 504 just to confuse things.
Any whoo…last night I sat in the living room with all these reports, applications and letters, feeling rather overwhelmed and a bit blue.
So, I pulled up my You Tube account and found my favorite video to watch. Nothing like a dose of The Blues to drive the blues away…and with that I will leave you with my favorite blues pianist and her improvisational skills…
It’s Our Fault They’re Here
20 Feb 2010 1 Comment
in Uncategorized Tags: Asperger's, autism, basketball, family, fun, globetrotters, love, parenting, weekend
Do we as grown ups know the power we have over the children in our lives? Not just our own..all of them…they run in packs.
I sat back last night and watched my youngest daughter get giddy, silly and crazy with an equally hyper ten-yr-old girl. As I watched them, I flashed back to my childhood. I was class clown, hyper, silly, whacky and fun. No “diva” in me…just total fun. These two babes embodied me and my friends “back in the day.”
Watched my teenage son and his best bud at the Globetrotters game. Torn between having fun at a crazy show and texting their friends and girlfriends. The show won out but that won’t last forever. I’m grateful he has a best friend that I trust and love. Grateful that both of them still tell me everything…how long will that last. I never told my mom anything…i guess I’m “cool.”
I sat with my little baby on my lap. Not so little. He stroked my cheek, rubbed my leg, made strange noises, took a walk, flew his airplanes and flapped his arms….but he liked the farting noises the globetrotters made.
All in all it was a fun nite. Successfully entertained multiple age groups….managed to get through the evening without a meltdown…had fun watching trick basketball…
Maybe we made some memories for them.
Either way…they live because we do…
Breathe…Baby…Breathe
04 Feb 2010 7 Comments
in Uncategorized Tags: ASD, asperger's syndrome, Asperger's, autism, Breathe, Childhood, family, frustration, life, love, motherhood
Living with a child who has Asperger’s is like living with a football referee…or anyone who wants to control everyone around themselves. Tell people what to do, point out when they screw up and blow a whistle on any behavior that doesn’t jive with your world view.
Tonight I had four extra kids here while their mom went to a meeting. Lovely kids…close friends…but Colin totally wigged out cause I allowed them to play Mario Kart on the Wii, which is his domain and he is undoubtedly the expert in all things Mario.
Taking turns was tough, but they worked it out alone. We have only two Wii remotes and two Wii wheels, so Colin had to take turns with two others. The schedule of play they worked out was fair…”It’s a nice pattern, mom” he says.
However, he didn’t stop talking, advising, yelling, cadjoling or subtitling the whole event. Commentary included…
“NO!!! You messed up!”
“That’s great! Oh WOW!”
“Don’t go that way…you’re so stupid!”
“Gimme that…you don’t know what you’re doing!”
Here’s the conversation we had:
Me: “Babe, you can’t always tell people what to do. Let them play by themselves.”
Him: “But they don’t know how to do it!” Stomp feet…thrust fists down at sides.
Me: “They have fun anyway, it’s okay if they don’t win or if they mess up.”
Him: “But they are slow! They can’t do it right! They push the left button instead of the “A” button and the whole thing stops working!”
Me: “But that’s okay baby…they don’t care. It’s fun anyway.”
Him: “AAARRggghhh…..”
Here’s my imagined conversation:
Him: “Why won’t anyone listen to me? I know what I’m doing.”
Me: “We’ll listen, but won’t always do what you want.”
Him: “Why not”
Me: “Cause we all have different ways of doing things.”
Him: “But why…it’s dumb”
Me: “It’s how the world works buddy. Everyone does things and says things and sometimes we don’t like that…but you can’t always be right. Not about everything.”
Him: “But I AM RIGHT!!! ALWAYS!!!!”
Me: “No you’re not…Breathe, Baby, Breathe.”
High Friends in High Places
21 Dec 2009 2 Comments
in ASD, asperger's syndrome, autism, baby, children, family Tags: ASD, Asperger's, autism, doctor appointment, friends, therapy
Woo 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
21 Dec 2009 Leave a Comment
in anger, ASD, asperger's syndrome, autism, family, Grace Tags: ASD, asperger's syndrome, autism, family, life, love, neuropsychology, therapy
Wow! 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.
So You Say