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 Bold…The Beast and The Beautiful
24 Jun 2011 1 Comment
in beauty, Change, family, girlfriends, girls, love, marriage, worldview
I stood for awhile tonight at my bathroom mirror. I actually stood and peered into my own reflection…looked into my own eyes to see what lies behind the flesh and bone. Someone told me recently that my eyes sometimes talk and I wanted to know what they said. They didn’t talk. Maybe I have to be looking at, or thinking of something before my eyes say anything. I actually twisted my face around to see what would happen. Not many wrinkles. No spots…just a couple of left over bug bites from a trip through the swamps of Chincoteague. Does my skin bounce back? Am I getting old? Should I get a face lift?
Ugh…those of you that really know me know that my beauty regime is minimal. Wash my face, brush my teeth…maybe do my hair…why the hell am I staring at myself in the mirror? Am seriously about to let my hair dred again cause I so do not feel like messing with a brush.
Because a face tells many stories. It’s the beast and the beautiful in all of us.
Colin watched me contorting my face in the mirror.
Him: “Mommy…there are 16 lines on your face!”
Me: “Really? Where?”
Him: “Beside your eyes…they’re funny when you laugh.”
Laugh lines. Only sixteen? I did count and he’s right on of course.
Laugh lines…awesome! From here out…every stress will bring on another laugh line. Every down moment will elicit a humorous outlook…every bad thought will cause an equally hilarious thought to cross my mind. I want 72 laugh lines before I’m forty! We’ve got 5 months.
Tomorrow I’ll stake up my lilies so their beauty will show through the scrub.
Tomorrow I will be beautiful despite what the beast inside me tells me I am.
Tomorrow I’ll kiss someone just for the hell of it.
Tomorrow I might dance some more…kitchen parties rock.
Tomorrow I might imagine the future.
Tomorrow I will laugh like crazy at anything I can find.
The beast won’t find me.
It’s all good.
Even when it’s not.
Growing Pains
14 May 2011 2 Comments
in asperger's syndrome, Change, children, family, peace, spring
Eight months? Seriously? Wow! I know I’ve said this before, but I really can’t believe I’ve taken so many months away from this little lovely blog. For so long writing was my therapy…and the only reason I stopped, honestly, was that so much of what I wanted to write would come out in jumbles and total ADD jargon. I’ll always admit to the fact that my mouth works faster than my brain and I say stuff unfiltered most of the time. But, in my writing I am free to edit and I haven’t wanted to edit much of what I thought lately I guess.
It’s been an interesting time of change for sure! Change often hurts, but we grow through pain and I’ve committed myself to a path of personal improvement in spite of hurt and irregardless of happiness. Emotions are wonderful things…but they can’t make decisions for you.
Maybe it’s because the warmer weather is slowly (way too slowly) working it’s way in…I’m a total summertime chicka…but a few days ago I felt my writing fairy tug on my sleeve a little. I was sitting at a ball park watching tiki tiki play a great game of baseball…and realized that the little fairy was buzzing very loudly in my ear. I love watching baseball…I don’t get tired of it. I also love watching Liam on the field…on the bench…anywhere near the field. He’s part of something really fun and really cool and he loves it. The excitement that he gets preparing for a game and the total meltdown that happens if he feels he didn’t do well afterwards are all so raw and real. We could all learn from him I think. As adults we’ve somehow learned to put on the “right” face instead of allowing ourselves the pleasure of just honestly feeling and letting go of both the good and bad so we can move on.
Colin is learning how to show his feelings too. Unlike Liam, who wears his heart on his sleeve, Colin has to be taught how to express those things. He has to be taught the words for the way he’s feeling. He can’t identify emotions the way others do…but he’s learning. This week (thanks to weeks of Social Skills therapy) he has been doling out hugs and ” I Love Yous” quite a bit. However….he announces them first. “Mommy…I’m going to come hug you and tell you I love you.” Then he sorta pats me on the back. Whatever! I’ll take it!!! Melts me. Sometimes it’s nice to know I’m more important at that moment than the plane, train or car he’s currently obsessing with.
This week, I finalized within myself the ability to not care too much what other people think of me. Not that I’m going to go do whatever I want no matter who gets hurt. Not at all. Just not going to worry about what I might imagine someone else’s opinion of me are. I had the privilege of hearing Darren Hardy speak last month. I took a lot of what he said away with me and slowly incorporate it into my daily activities. Most importantly he taught me not to be afriad of what other people will think. If they aren’t going to cry at my funeral…then they aren’t anyone to be afraid of.
In the meantime…I can’t wait for a fabulously fun summer! I’ll continue to foster my mild crush on Rob Thomas and keep dancing like a nut in my kitchen at night!
Birds, Bees…and Weak Knees
03 Jun 2010 2 Comments
in ASD, asperger's syndrome, autism, children, family Tags: ASD, asperger's syndrome, Asperger's, birds and the bees, birth, how live happens, motherhood
I have noticed Colin initiating more spontaneous conversation lately that FINALLY has nothing to do with Mario Brothers. A few weeks ago, it seemed like a little switch went on and we’ve been having quite long and complicated conversations that revolve around him wanting to know something about life.
Tonight’s conversation, however, made me weak in the knees.
Sitting by the pool, warming up after an after-dinner-swim. Erin’s still swimming and he’s watching her. He’s wearing his swim shorts, swim shirt and ever-present life vest. Wrapped in a colorful striped towel with his little purple lips….
Him: “Mommy…I think I’d like to be a girl.”
Me: “Why?”
Him: “Because girls are pretty.”
Me: “But boys are handsome.”
Him: “I’m quite tired of being handsome. I was hoping that I’d be a girl.”
Me: “You’re definitely a boy buddy.”
Him: Big sigh.
One minute passes silently.
Him: “I think you’re going to have another baby and it will be a girl.”
Me: “OH NO! We are definately NOT having any more babies.”
Him: “Well, you should have had two babies the last time…me and a girl.”
Another minute passes. By now, Erin’s out of the pool and we’re wrapping up and heading in.
Him: “By the way, was Erin a baby?”
Me: “Yes, everyone starts life as a baby. Liam was a baby too.”
Him: Smacks forehead, throws head back…”What the heck?! You had THREE babies! All at the same time?!”
Me: “No, at different times.”
Him: “Was I the first one?”
Me: “No, Liam was first…that’s why he’s oldest. You were last, that’s why you’re youngest.”
He thinks for a minute (by now he’s stripped totally naked, cause he like to be that way) and as we walk towards the pool fence door he asked THE QUESTION.
Him: “Mommy, how does the doctor get the baby to come out of the Mommy?”
Me: gulp…weak knees. “Um…well…you know how girls are the only ones that can have babies, right? And you know that girls have vaginas…remember, it’s near the place that their pee comes from. Well, babies also come from the vagina.”
Him: “What?! But it’s so small there.”
Me: “It gets bigger…trust me!”
Erin: “OH MY GOD MOM!!!”
Me: “I have to tell him the truth Erin.”
Him: “But I’ve only ever seen hair there. Isn’t that where your Penis (yes, emphasis added) is supposed to be?”
Somehow that ended it…and now I sit wondering when he’s going to ask me HOW the baby gets in there…right now he’s concerned with how it gets out.
Lord Have Mercy.
The Blog Fairy Returns
27 Apr 2010 2 Comments
in ASD, asperger's syndrome, autism, children, family, Uncategorized Tags: Asperger's, aspie, colin speaks, mommy's diary
I can’t believe it’s been over six weeks since I blogged. What a dry spell that was! I have no excuse, no reason other than pure busyness and distractions that can’t be ignored. Thank you to all of you who have asked where I am or how I’m doing. I’m fine…
I’ve decided to create a new page called “Colin Speaks” here on this fine blog. Living with an Aspie whose manner of speaking and use of language is very pedantic and precise. He enunciates every syllable (would make any language professor proud).
My plan is to regularly update Colin Speaks. I’m not sure why I feel the need to catalog the things he says and does…perhaps to keep those things in my own memory. But, my hope is that it will give those of you without an AS child in your lives a glimpse of what it’s like for both the child and the family to interact with one another. And, for those of you WITH a spectrum child…maybe you’ll find yourself and your experiences here…
Some will be funny, some poignant…some probably very boring!
Happy Tuesday!
Feelin’ Pretty Cool tyvm
03 Mar 2010 Leave a Comment
in child, children, family, feminism, girls, mother Tags: basketball, cool, cool runnings, family, mommy dearest, teenagers, texting
Monday evening I spent two hours at a very emotional basketball playoff—my son’s last ditch effort to win and move on. Sadly, that win didn’t happen because they got their butts handed to them. Not one man on his team was on their game and when they realized that…they started to have fun! Glad basketball is over and we can move on to baseball which will be the thing that moves Liam out of my house and in to college…bring it on!!!
Sitting on the bleachers next to me was a very lovely teenage girl (whom I know well). She told me I was “cool.” Not the first time I’ve heard that from my son’s set (or my daughter’s either), but hearing her say that gave me a warm fuzzy.
YES! I’m cool! (pump fist).
What makes someone my age “cool” to the kids? Is it the way I dress? If jeans, sweats, UGGs or flip flops make me cool…that’s easy! Is it the big car with heated seats? Once, one of the girls in my son’s friend circle told me she liked how I smelled…hmm….ok. Thanks. Does my perfume make me cool?
Is it the wild and wacky dancing in the rain with kids in their skivvies? That was fun and very cool.
Is it because my head stays attached to my shoulders and I simply sigh heavily when I hear swear words and trash talk coming from the next room or the back seat? (I don’t condone it, but it’s not the mountain to die on either).
I must be cool because my kids still tell me everything (well, nearly) and so do their friends. That will change, I’m sure, but for now I probably have Too Much Information and I will protect that.
“It’s cause you’re the warm, fuzzy, squishy cool mom…that’s why our friends tell you everything.”
See…I’m cool, man!
I’ve been sucked in by some of the music my kids listen to….loving Owl City and Lady Gaga (um, yes). Now it’s my job to convince them that the Grateful Dead, Elton John and The Who are cool too. But can’t wait to take Erin to her first concert in a few weeks….TRAIN!!! We’re there babes! “Hey Soul, Sister!”
At the basketball game Monday night I was texting Liam’s best friend. (This is the boy I refer to as “Son #3″. Our house is his second home and vice versa for Liam. I treat him as I do my own.) He was sitting far away from me with the opposing team’s cheering section, so I decided to text him and tell him off for being on the wrong side of the gym. And, I just like messing with him.
Me: “I can c u. Sitting with the enemy.”
#3: “LOL Mrs. G, he’s my old football coach.”
Me: “Fine! LOL, I was just kidding.”
#3: “Ok. And it’s jk fyi.”
What? He’s correcting my text lingo? Really?
A few moments later, Son #3 sheepishly makes his way to my side on the bleachers. He wasn’t really coming to see me, but to check out the two pretty teenage girls next to me. He sat down behind me…
Me: “What the heck, Dude. You feel the need to correct my texts or something?”
#3: “Yeah, Mom. You old people need to get with it.”
Me: “Wow! You just earned yourself very loud country music on the way home.”
#3: “Oh yea? Well, I’ll just turn up the iPod super loud and play the Beastie Boys to fight back!”
He knows how much I hate the Beastie Boys so he often does that to me.
Son #3 slithers off the bleachers but I got a high five on the way out…that’s cool.
I will never know what makes teenagers and tweens think a grown up deserves the label “cool.” That’s okay, I’m happy to bask in it as long as I’m able..
I can live with that.
In the meant time….
I’ll just rotflmao at all their craziness…idk, seems like fun to be a kid these days.
And wth, it’s ok to be cool.
Better Living Through Chemistry?
10 Jan 2010 2 Comments
in ASD, asperger's syndrome, autism, children, family, kisses
Colin began taking a stimulant medication two weeks ago. On the advice of his psychiatrist and pediatrician, we agreed to try giving him a low dose of amphetamine each morning in an attempt to control the impulsivity that comes along with Asperger’s. We started it over Christmas break so that any adverse effects would happen here at home and not at school.
So far, so good…I think.
Feedback from his teacher and aide last week seemed positive. Colin’s biggest “issue” at school is his constant need to touch people. Rub them, flick them, make faces at them, hug them. An intense need for tactile stimulation means he’ll go get it wherever he can and he loves the feeling of another human being. This week, he was able to stay in his space better and needed less re-direction. Less stimming by touching people, although his little squeeze ball was in constant use. No behavior issues with other kids that required a “talk with Mrs. G.” after school. All good stuff, in my opinion!
Feedback at home is mixed in nature. Mixed up in my thoughts anyway.
Yes, he’s less impulsive. He’s not jumping over furniture or smacking into his brother. Less time spent arguing when asked to do something and more time sitting quietly. Only one tantrum per day instead of four or five. He’s sleeping well, staying dry at night suddenly and focusing on the task at hand a bit more.
But here’s my conflict: I miss some of those impulsive moves. Particularly one. The one where he touches me all the time. Prior to taking meds, he’d exhaust me with hugs and kisses. Frequently, he’d stop what he was doing just to come rub my arm or cling to my leg. Certain clothing I wear illicits more of this touching and I’d get so tired of it! How many moms have to say “Only one more hug before supper allowed.” How wierd is that?
Now, I’m lucky if I get two or three spontaneous hugs per day. Is that better? I’m not so sure.
So, this weekend I decided not to medicate him. I got tons of hugs, loving kisses, back rubs, arm rubs and leg pulls. I also got lots of wierd noises, couch jumping and spinning in circles. That’s okay…I’ll take it if it means I get my dose of touch for the week.
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.
Recently I Was Really Tired Out
21 Sep 2009 4 Comments
in child, children, death, elderly, family, Parkinson's Disease, Uncategorized Tags: stay at home mom, swings, the kids are alright, tired
Colin crawled into my lap this evening. He had a rough day at school today. During Library, he got “in trouble” and had his name moved from the Green to the Yellow light on the traffic sign. That’s a bad thing. When you get to Red, you are in deep doo-doo. It took him nearly an hour to let me in on what he had done to result in his traffic light changing. Library days are wonderful and he didn’t come home with a book…what gives?
HIM: “I was sword fighting with my book-finder. Me and Chorea were swordfighting and got in trouble and we got our books taken from us and we had our names moved to yellow and, and…..and I DON’T WANT TO TELL YOU!!!!!”
ME: “Thank you for telling me what happened. I’m sorry you didn’t get a library book, but I’ll bet you won’t sword fight with rulers again.”
HIM: “NOOOOO!!!! I’ll NEVER EVER do it again.”
Good.
Someone asked me this morning if I was ready to get back into the swing of things. I bit my tongue and smiled rather than telling them that my swing had swung far away many weeks ago.
I’m looking for it.
Three months ago I was working full time, swimming with my kids, admiring my husband as a stay-at-home caregiver.
Two months ago, hubby was starting a job and I was ready to be home to care for everyone.
Six weeks ago I was at the beach.
One month ago, we were asking Hospice to come care for Charlie as he prepared himself to take his final journey.
Three weeks ago I was managing medicines, phone calls, dr. visits, meals, bedtime, baths for young and old.
Two weeks ago, I was beginning to sit vigil.
One week ago I was planning for a funeral and sharing my home with extended family who rallied around to get through this.
Today, I said goodbye to the last of visiting family. I made calls to Social Security and insurance companies informing them of a death. I mowed the yard. I said goodbye to my husband as he left for a week away. I wiped tears, fed bellies, made beds, washed towels and felt very very lonely.
If this is the new swing….it’ll take some getting used to.
HIM: (On my lap) “Mommy…recently, I was really tired out.”
ME: “Yeah, why?”
HIM: “Cause I ate a whole green apple for supper.”
ME: “Good! I’m tired too.”
HIM: “Why?”
ME: “Cause I’m looking for my swing and I can’t find it.”
HIM: “Well, you can borrow mine.”
So You Say