Professor Mother Blog

March 24, 2011

Little Girl Lost

Filed under: Autism — profmother @ 11:01 am

I keep forgetting that Elizabeth has autism.  I mean, I know that she has autism, but generally, she copes with it well.  I have come to think of her autism as a chronic condition like mild diabetes- you learn to live around it.  We use lots of pictures in our communications; I explain in story format and use lots of scripting to help with social skills; chewing gum helps divert repetitive stimming behaviors and the sensory challenges- well, sleeping wrapped up like a mummy in a closet really isn’t the end of the world.  She does have autism, but it is soooo much less- so very much less of an issue that it was when she was a toddler and in preschool.  We’ve normalized to autism and it has normalized to us.  It took tears and time and therapy- but we’re in a good place. 

Only, like diabetes, every now and then her autism rears its ugly head and becomes a real problem.  Our autism- and everyone’s autism is different- seems to come and go.  Like a storm, it comes, dumps on us all, and then drifts away, leaving wreckage in its path.  Tiredness can trigger it.  Overstimulation can trigger it.  Only, sometimes they don’t- so there’s no real pattern to it at all.

Yesterday- yesterday was a storm of autism.  I’m not sure if there was a trigger.  I’m not sure if it was time for the dam to break or if our coming and going and my unusual spate of traveling set it off.  I’m not sure about much.  But by the time I was alerted to it, it was too late and we were spiraling down that path.

It would almost be easier- maybe- if I knew the path.  We well know the path with Ray.  The responses are well-established with Ray- no matter how erratic the pattern.  But with Elizabeth- we were in uncharted territory.

I first got an inkling when I got a knock on the door- and Faith- a little girl from around the corner was crying and said “I don’t think Elizabeth’s being a very good friend,” and proceeded to tell me what Elizabeth was doing.  Elizabeth had been riding bikes with Emily, Tracy and Faith, when she upset Faith by teasing Faith about a boy that Faith liked.  Faith got upset and yelled at her.  That was enough to put her over the edge.  The upshot was that no matter what her friends were saying to get her to communicate, she was spinning in circles, chanting another friend’s name- part of the name “Gret!  Gret!.. Gret!”  Then, she would dart over to them, pull their hair and then, as they were yelling at her, spin and chant “Gret!  Gret!”

Normally, when she is in Autism-Land, we can snap her out of it- isolating her and enforcing quiet.  Comforting her does not help – she just spins more.  Comfort helps later, when she’s processing.  But quiet and isolation is where she finds her center.  I was rather upset at this emergence of autism that has been so, so, so very dormant for so long, that I grabbed her and placed her in her room- meanwhile thinking of the social fall-out.  Emily and Tracy- who are fairly tolerant, have rarely seen this side of her.  Their eyes were enormous and I went back outside to calm them down and try to explain.

How do you explain autism, when I don’t want to isolate her by giving her a label that really is a very small part of who she is now?  Yes, Elizabeth has autism, but she’s also gifted; she’s also in 4th grade; and she’s lived all over the country- she’s so much more than one single label.  And so, I explain it using a concept of her brain.  I tell them that they know that in her brain when she’s tired or anxious, she can’t find the right words and she just reaches for a word that makes her feel better.  She wasn’t being a bad friend- she just could not find the words today to tell them how she felt.  Soon, she’ll be better.  They just need to give her space.  And they need to know that just as she loves them, they love her and you try to understand each other when you’re friends.  They nodded, looking solemn and sympathetic.

However, back inside, Elizabeth was packing her bags.  She emerged from her room, rolling suitcase in hand, and announced “I’m leaving!”.  Just then, the phone rang.  I informed Elizabeth that no, she wasn’t running away, she needed to go to her room and we would deal with this later, and I took the phone call- a friend of mine who rarely calls, and was calling to tell me of the death of a common friend.  A sad phone call. Elizabeth stalked back to her room.

During the brief “Oh no!  How?” conversation, Elizabeth stalked out of her room, rolling suitcase in hand and headed out the door announcing “I’m leaving!”  I recognized her words and her actions and the way she was holding her head- a combination of the running-away scene in “Ramona and Beezus” and our friend Vicki’s “running away from home” story.  And knowing how the scripts go, I let her go.  I watched her walk out the door with my stomach hurting from the intensity of it all.

Ray was hysterical.  At first, thinking she was dramatizing and playing along, he locked the door behind her- peeking out from the curtains to encourage the laugh.  Then, as she turned the corner, he spun around and said “She’s GONE?!  And you’re going to LET HER?!”

Do you know how hard, hard, hard it is to watch my lovely daughter, in “that” space where only a set of scripts are giving her any guidance, walk away with her suitcase in hand?  It’s a kick in the stomach and I can see the edges of panic.  I know that the script says that Ramona (and Vicki) would go to the edge of the woods and that she would wait and that she would turn around, having realized that maybe, maybe running away wasn’t the best thing to do.  But I didn’t remember the script of what Ramona’s mother said to her. I couldn’t remember what her mother did, other than let her go and then go get her and hug her.  Vicki just came back home- so I wasn’t even sure what script Elizabeth was playing out in her head.  And what if… what if she really did keep going?

And so, I calmed Ray down, told him I was going to get her, and by the way, I also had to let out Tom’s dog, a friend of ours who is in the hospital.  I got in the car, and drove around the corner- to see Elizabeth trudging back with her suitcase, limping along.  ”Hey,” I said. “I’m going to go and let Kirby out for his evening break.  Wanna come along?”

Sure!” Elizabeth said sprightly, with no attitude, no remonstrations, no sulks, and no tears.  The script had been broken and we were back.

She was focused and present during the whole time we were at their house- we talked about Tom’s status, and how they were dealing with the recent emergency that we were trying to support them through.  We worried together and came back home to get food we had gotten them.

But as soon as we got home, the script kicked back in, and Elizabeth burrowed into my bed, wrapping the covers all around her.  She wouldn’t let me hold her, just kept spinning in the covers.  I asked her “Why run away?  Why not just hide in your room?  Hide in the back yard?  I won’t bother you- you can have all the time you need to be by yourself?  Or we can talk about it when you’re ready to talk about it.”

I didn’t want you to know where I was,” she said.  ”I wanted to be lost.

….

My heart just broke. I still don’t know what I should have/ could have said to that.  I ended up telling her that when she’s lost, I am terribly, terribly worried, and that she does not want to ever hurt anyone that badly.  That we can talk about anything, that there is always a place for her.  I always love her.  And that she is not safe when no one knows where she is.  I flooded her with words, all while holding her tight.  And Ray was part of the discussion so that he knows that running away is not an option. 

I wanted to be lost“… those words echoed an photograph we have of her when she was a little bitty girl… when autism was crashing into our lives and she was pulling back.  There are images of her two-year old self where she is looking out at a world that looks confusing and scary- and I have always called the picture “Little Girl Lost“.  She started pulling away into her own space, into her own world.  I had just read “The Boy Who Loved Windows” and I spent an awful lot of time on the floor for the next two years- engaging her, engaging her, engaging her.  Bringing out her language- one slow word at a time.  Making her laugh- making our world a happy, fun, safe place for her to live.

Apparently, like the chronic condition that autism is, we’re going to have to convince her again that this world really is a place where she wants to be.

Little Girl Lost- We dressed her up here. She was cooperative- but retreating

A more typical pose- we call this one "Paparazzi". She loved the boa and the drama of the outfit

 

February 17, 2011

Can’t Get No Satisfaction- IEP version

Filed under: Autism,Schools — profmother @ 12:41 pm

A friend of mine from Vanderbilt’s Kenndy Autism Center and I are involved in some VERY interesting research- looking at parents’ and teachers’ satisfaction of how that IEP process works.  We all have our stories- heck, we all have our nightmares.  We go into an IEP like we’re going into a battle.  Sometimes it works.  Sometimes, it doesn’t.  But IEPs are stressful for everyone involved. 

But there’s little to no research out there about what makes a “good” IEP experience- and what makes a “bad” IEP experience for families and teachers of kids with autism.  Almost none.  So… that’s where we come in.

What I am asking my readers to do- teachers, parents- anyone who has ever sat in on an IEP of a child with autism- is to fill out a survey that we’re doing.  You might need to copy and paste the URL of http://tinyurl.com/mla3wm into your browser. AND please, please forward this on to anyone you know- anyone else who has sat down at that IEP table- on either side, and share your story with us.  The survey itself should take no more than 10 minutes.  It will help us communicate to schools, advocates, and parents how to makes this process better. 

There will be some questions about your zip code- and if you’re not in TN or GA, you will get a message that says “Routing problem“, and then continue to offer questions.  If you have TN or GA zip codes, you will be asked about specific TN and GA advocacy groups.  If you’re not in TN or GA, please keep on,  but indicate if you DO use an advocacy group.

All information is anonymous- there is no place to put your name or any identifying information- it’s just an online survey with no way to track back to you or your child at allSo- go ahead.  Be honest.

I can’t emphasize this enough- We really, really want to hear from you.

IEP Survey for Parents & Professionals of Students with Autism Spectrum Disorders

What contributes to satisfaction with the IEP as written and implemented?

Is it…

1) Preparation for the IEP meeting?

2) Processes used for planning and conducting the IEP meeting?

3) Perceptions of the IEP meeting?

Please tell us!

Complete the survey at http://tinyurl.com/mla3wm

 

If you wish to take the survey on paper, call or email us with your address.

Lynnette Henderson, PhD               615-936-0448 or 866-936-8852
lynnette.henderson@vanderbilt.edu

Claire E. Hughes, PhD                 (912) 279-5848

cehughes@ccga.edu

February 15, 2011

Hand-icapped

Filed under: Autism,Home Things — profmother @ 1:37 pm

My first mistake was cooking dinner. 

That’s the joke I now give when people ask, with slightly averted eyes at the black, Frankenstein-like stitches sticking out of my finger.  Five of ‘em.  On my left pointer finger. 

It was last Monday- and I was bound and determined to cut the overly not-quite-ripe-enough spaghetti squash for the dish that we had had last month and wonder of all wonders- Ray actually loved.  I’m trying to really focus on making sure that our family eats healthy “stuff” after a free-for-all during the holidays.  So, I’m trying to cut this obnoxious squash with a very good knife- a Christmas present, in fact.  One of those enormous cleavers with lots of serrations.  Perfect for those hard jobs.  Only, because I’m frustrated and I was fussing at the children to do some task, I ended up banging the squash up and down on the counter.  When the knife flew out of the squash.  And glanced my finger on its way down onto the cutting board. 

Rats.  I saw the cut and sighed.  I stopped nagging the children and went to the bathroom where I put a bandaid on it.  Just a little line.  Not really a big deal.  On my left hand- not my writing hand.  And I went back to the kitchen to finish cutting the squash.  Which I did and put it in the oven to roast. 

It was then that I noticed that maybe my finger was hurting a little bit and I looked down to see my finger dripping on the floor.  Large drips.  Back to the bathroom to take the bandaid off to check this out.

And soon, my bathroom looked like a murder scene.  I’m not crazy about blood anyways, and this was… gruesome.  I called for the children.  Something about my voice got them off the couch and they came into the bathroom, where I was holding a gauze pad over my finger.  I was not hysterical.  I was not scared.  Just calm and clear.  “Children, I need your help RIGHT NOW!”. 

And this is where I learned that despite her growth and her progress, I cannot yet count on Elizabeth in a crisis.  She turned pale, turned around immediately and disappeared as far away from me as she could in the house- back in the back corner- where she waited it out. 

Ray, to his credit, stood there and asked for directions with an attitude that only a pre-teen can do.  “Yea.  What?”  He cut surgical tape in pieces for me- throwing away one that was minisculely too short to his eyes, and watched while I wound it around my finger.  I complimented him on his level-headedness.  ”Is that all?” he growled, and went back to his computer game. 

I looked at my gauze-wrapped finger again, and saw that the blood on the pad that I was applying pressure on so firmly was becoming soaked again.  I called my mother- because somehow Mother always knows how bad the hurt is even from a distance.  And so I called James and asked him to come home and take me to Urgent Care.  I turned off the oven.  At Urgent Care, I got lectured on the proper use of knives and that yes, it did need stitches because it was on the knuckle and it was deep, and I began to realize how very, very lucky I was not to lose the finger.  Or cut a nerve.  It hurt, and it needed stitches and it was large and ungainly, but it was still there.

Only, I couldn’t type very well.  I type- a lot.  I type my lesson plans.  I type my lectures onto Power Point slides.  I type on my book and I type to look up recipes.  I type to stay on Facebook and I type to stay in touch with my children’s teachers.  I could sortof type 9-fingered, but it was slow and it was awkward and you make a lot of typos typing 9-fingered.  A lot of typos.  And so, I’ve been hampered all week with my lack of communication.  I’ve let the blog slide and haven’t been on Facebook for a while.  I never realized before how my typing allows me to communicate- to plan- to think- to organize my thoughts.  I’ve been disjointed all week.  I’ve felt isolated. 

Tomorrow I get my stitches out.  Today, I took off the bandages and can move my finger freely and, other than a little pulling, with little pain.  And today, I can type again.  With full appreciation of how important even a finger is to keeping connected with the world.  And I have a far greater appreciation of my own fingers and how difficult it is for others with much, much greater communication issues. 

Elizabeth, with her own communication issues, who was so panicked that she couldn’t help me, has now decided that she’s afraid of knives- to the point of shrinking away from that part of the counter where they are kept and staying away from the dishwasher where they are washed.  This weekend, she moved her chair away from the knife we were using to cut the pizza (even healthy eating needs a break).  She has informed me that she will be having a private chef when she’s a grownup, so that she doesn’t have to work with knives.  She’s creating a phobia right before my eyes. 

I plan to start her rehabilitiation- right after mine.  I think that once my stitches are out and my finger less Frankenstein-y-looking, she’ll be better and I can start to work with her.    A little fear and healthy respect- respect that I regained- is a good thing.  Too much is disabling.  I plan on offering her a little steak in a few weeks- her favorite meal- and do a hand-over-hand therapy session.  Applied Behavior Analysis at its best…

And for the record, we ate the spaghetti squash dish the next day and it was delicious.

February 7, 2011

Not-so-Super Bowl

Filed under: Autism,OCD,Uncategorized — profmother @ 7:25 pm

I had planned on grading some of my students’ papers.

I had planned on getting cozy in my fuzzy robe and snuggling with James to watch the 2nd half.

I had planned on cheering the Steelers to victory- or maybe booing to a defeat.  But I wanted victory… We DID live for a while outside of Pittsburgh and I know what a difference a winning Steelers teams means to them.

What I had not planned on was spending most of the 4th quarter holding my son and rocking with him in the rocking chair as he raged against his anxiety that the Steelers would pull a come-from-behind victory.  I have to say that I was very, very glad that the Steelers lost the ball in the last minute rather than making a miraculous touchdown because it saved me hours of calming afterwards.

Ray has been fixated about football for about six months now.  He started with UGA football, and moved on to selecting teams based on his opposition to us- Emily wanted Auburn to win in the BCBS title championship- therefore he turned in a University of Oregon fan.  I was cheering for the Steelers- therefore he’s a Green Bay fan.  He selects teams based on how much he wants to be resistant to the person who is a fan.

We went to a friend’s house for the first half.  He was cute then.  He wasn’t as tired and he could interact with other football fans.  He and our neighbor engaged in man-talk- exchanging stats and information.  Rick was amused at Ray’s fervor, but Ray was coherent and it was funny.  We all enjoyed the commercials. The Packers had a clear lead. We mostly enjoyed the halftime show (although it appears we were in the minority).

It was a different story when we got home.  Ray was tired and less in charge of his emotions- and so the not-focus, not-fixation, but primary-purpose-for-being started. He was shaking in his anger at his dad when James verbally analyzed the game to determine how the Packers could lose.  And the Steelers started a come-back. And continued to improve.  And with a minute to go, victory was possible.  And so, we wound up in the rocking chair, where I kept repeating my mantra “It’s a game.  It’s only a game.  It’s a game… “

I have never been so glad to see the Steelers lose as I was last night.  (Sorry, Pittsburgh friends!).  Football season is completely over for six months. And maybe Ray can find a new fixation.  Although Ray informs me that the NFL draft has started. sigh…

It hurts me to watch him wrestle with whatever it is that’s got him anxious.  I know that by trying to control a game, he’s trying to control his life.  I know that he’s trying to learn all he can about football so that, as in his life, he can predict the outcome.

An outcome- that as any Steelers fan will tell you- is uncertain.

February 5, 2011

Medication Meditation

In the midst of my whining about my week, I got an email that reminded me that cars and cats notwithstanding, there are other roads and other issues that are not just small piranha bites, but great big Great White Shark weeks.

Let’s-call-her “Abbie” asked me about our decision to put Ray on medication.  She’s being pressured by her doctor and doesn’t know what to do.

Abbie, we faced the same decision point.  We agonized, we worried, and we knew that any direction we went would be unknown, scary and would make someone irritated.  Someone who would get in our face and say “How could you… I told you… Don’t you think…?”  There were several things we used to close out the many, many voices around us and to keep focused.

1)

The first thing we kept in mind was Ray’s history.  Ray was BORN fussy- unhappy and anxious and not eating.  He was only comforted in my arms as a baby.  He was also born bright and verbal and funny, but with an “edge” to him.  There’s something about his face that I recognize now in other children’s- his face is tight and sharp around his cheeks, and his eyes are wide-open and active.  I’ve seen it in my friend Linda’s son; I’ve seen it on the faces of other children I work with.  Something about the eyes… a little too alert and an awful lot of anxious thinking.

The other thing that I held on to was that I can never, never predict Ray’s moods. Some of the time he’s wonderful- he’s funny and he’s creative and he’s loving.  I like to think of these times as the “real” Ray- the person he is  until the neurological storms in his brain cloud his thinking, hijacks his reactions.  These storms appear to have little relationship to events around him- I can’t find the cause and effect.  I can be firm and we have a lousy day.  I can be stressed and frazzled, and he’s fine.  Or the other way around.

We are always surprised when Ray’s issues come up- you would think that we would be used to this by now.  But the up-and-down is so hard.  We spend an awful lot of time calming him down; an awful lot of time being consistent, consistent, consistent- until we collapse from our own exhaustion and our own loss of control. We’ve tried monitoring his diet- does that trigger things?  We’ve tried keeping things calm.  Sometimes these work- sometimes they don’t.  Of course, stress triggers it- that we know.  But beyond that… ? We always feel if we could find the “key” that triggers him, we would solve this.  But we can’t.

Ray’s Tourette’s tics are the least of his issues.  When he was spitting- well, yes, that was gross.  That made him different.  But his throat-clearing, the shuffling of his feet at doorway edges, the tapping of his fingers- those get lost in the midst of his overall movements.  I know he moves on purpose to hide his tics- to take the edge off of them.  He’s constantly shifting.  And we can live with that.

But what hurts my heart so much is when he can’t follow a conversation- when he asks a question, and when I’m two words into an explanation, he says “Never mind!” and wanders away from me.  It hurts when homework can be so, so hard- not because he doesn’t know it, but because he can’t pay attention long enough to do it.  We call those the “butterfly moments” because when he’s trying to pay attention to you, he’s really with you, but otherwise, he’s off and drifting.

Unless he’s anxious, which is when he gets fixated and oppositional.  Lately, he’s been fixated on football.  It’s expanded beyond UGA football, to hating Auburn, to wanting the Green Bay Packers to win the Super Bowl- even though he’s never been to Green Bay, nor have any affiliation with them.  But because I’m rooting for the Steelers, because Emily was cheering on Auburn, he has to take the other side.  It’s funny, and it’s annoying because everything, everything becomes a fight.

“Who do you want to win, Mommy?”  “Ok, Ray, I’ll take the Steelers because we used to live near Pittsburgh.”  “Well, I think they’re awful!  I want the Green Bay Packers!”  It would be funny if it weren’t my own child with whom I can’t even share a fan moment.

So- that’s Ray… a long history of erratic, unhappy behavior that has no clear-cut label.  A recipe of a little autism, a little Tourette’s, a little ADHD, and a little ODD.  Some people call these “manufactured labels for bad parenting”.  Well, I gotta tell you, they’ve not seen my son when he’s coherent and when he’s clouded by neurological storms.  I can see the differences; and I can assure you that there is a clear-cut biology involved here.

2)

Which led us to the latest, newest doctor who recommended medication.  ”You wouldn’t withhold insulin from a diabetes patient.  You wouldn’t say he should be able to control his heart if he needed heart medication,” she said to us. “Well, his brain isn’t making enough of the stuff to keep him alert.  Being this way is not his choice- he’s reacting to the brain chemistry in his head.  It’s already there.  It’s like telling someone who has had too much to drink that they aren’t really drunk- it’s just an excuse.  No, they’re reacting to the mixture of chemicals in their brain.  But their chemicals wear off.  Ray’s doesn’t.  And so we have to help him get the balance right.  If we don’t help him, there are lots of studies that find that these kids self-medicate. And they don’t pick things like coffee- they find that they like themselves better on cocaine and meth.  I’m not telling you your kid is going to become a drug addict.  But we do know that kids who are not helped through legal means are much more likely to help themselves through illegal means.”

I gotta tell you that we did not like her approach.  She was scaring us and she was more than a wee bit arrogant.

But she was right.  I did my own research- and to quote from Essortment, “Illegal drugs are used to obtain a “high” feeling or to escape from reality. Ritalin works to improve one’s awareness and to improve their attention span and concentration. The two drugs serve two completely opposite purposes. Many counselors have claimed that children that struggle with ADHD, without the help of Ritalin or other prescribed medications, may be more likely to use illegal drugs as a way to help them cope with the stress of ADHD.”  The use of meth and cocaine are only barely related to the use of stimulant medication- they’re much more related to demographics of poverty and parental upheaval and school failure. And we’re working with the teachers, with tutors and with my own knowledge to make sure that Ray does not fail.

There are other sides that claim that drugs are the easy way out- that I’m teaching my son that life gets easier with a pill and not from hard work- that I’m looking for an easy fix for… once again, bad parenting.

And once again, I know- I KNOW that while I may get tired and we are certainly responsible for aiding some of the misbehaviors when we get tired and irritable, most of Ray’s issues are biological.  We have a daughter who does not have these same issues.  I have taught hundreds of children- some with issues, some without.  I come from a family with a history of Tourette’s and issues- a family that I did not grow up around.   There is a biological root to some of this.

And so, we looked at medication.

3)

The thing we held on to was that medication was a choice that we could always unmake.  If a particular dose, a particular prescription didn’t work, or we didn’t like what it was doing, then we could take him off of it.  No harm, no foul was the agreement.  We would follow our parental instincts and snatch him off of it if it wasn’t right for him.

And  I have to say… medication has made a world of difference for us.  It hasn’t changed Ray’s basic “Ray-ness”- it’s just taken the edge off.  I’m less worried about him.  I can see him building up successes to keep him going.  I don’t cry all the time anymore.  We still struggle with him.  That “in-between” time between when his Daytrana- which is a stimulant- and he goes to bed with his Clonodine is… challenging.  But we have more good days than bad.  The bad days- wow… they’re really bad.  The good days- well, they’re sweet.

The Daytrana makes him more aware- and so, his tics are not necessarily worse, but he is aware of them more.  The Clonodine seems to have alleviated some of the more significant tics- the overt ones.  The ones he has now can be hidden easier.  He’s more focused in his anxiety now- it’s not as free-floating.  He can sometimes describe now what he’s anxious about- and that insight has been marvelous because we can help him when he can share.  And sometimes, he can’t.  But inch by inch, we’re seeing progress.  And regression.  But mostly progress.

My goal with medication is to teach him what those neurological synapses feel like- so that he can find his way back to them when he needs to have success.  If yoga or meditation can help him find his way as well, then I’ll try those too- but he’s still young.  That level of concentration is something to grow into- and he can’t even start up that hill until he learns what it feels like.

But I was bound and determined that I was not going to let my issues and worries with medication get in the way of what my son needed.  Could we have done this without medication?  Possibly?  But at what cost?  I’ve read up on nutritional means- but it’s hard enough getting him to eat anything, much less “good for you” stuff.  I get vitamin supplements into him by pure will and out-stubbornning him.  He DOES eat a “balanced” diet- mostly.  But I decided that I was not the food police because I couldn’t control that much of an 8-year’s life.  If I were to control his eating to that degree, he would not learn control of himself in other ways.  And so, we teach good nutrition. But we do not control his every choice.  I give him freedom within structure.  And medication helps us with that.

I also had to keep in mind the needs of his sister- who has her own issues.  I have to be there for her.  And let’s not forget that James and I need a break with just each other sometimes.  We have to be there for our friends and our family as well.  And let’s not forget our pets.  Ray is not an isolated set of issues- he’s part of a system.

****************

*I* know that I am not drugging my kid into submission.  Heck, I can still barely keep things stable as it is.  But I do know that 1) this is biological, and biological causes require biological fixes- and environmental changes that can create biological change, 2) we made the best choice for Ray and for our entire family at the time, 3) we make a new choice every single morning, and 4) as he ages, the issues will change, and our solutions to them may change.

And the last thing I know is that we made this choice very, very carefully with a lot of informed thought.  I would NEVER tell another parent what to do- they have to make their own choices very, very carefully-keeping in mind what is best for their child and what is best for their family. 

January 13, 2011

Happy Blog-iversary to Me!

Filed under: Autism,Book- Parent's Guide,Gifted,Twice-exceptional — profmother @ 8:46 am

Today, the 13th of January is my one-year anniversary of my blog.  When I “jumped into the water” of blogging, I had no idea what awaited me- how many, many wonderful fellow bloggers I would meet and what an amazing community there is “out here”.

I learned about blogging when Mom-Not Otherwise Specified was a blog that I found and loved- I depended on- I listened to.  In the times of dark days, I read her blog, her words of wisdom and her feelings about what was happening to her and her son.  She wasn’t speaking to “me“, but her words spoke “to” me.  I read her blog for several years as part of my regular morning routine.  I certainly never posted- that would be breaking that “barrier” I had imposed.  After all, I could learn from her, but there wasn’t much she could learn from me.  Heck, I couldn’t even find my own words- we were too lost in the mists of identification, coping, struggling, finding a “new normal”.  Her words were a lifeline that I was not alone.  But I had no time for joining the conversation.

I learned more from Kristina Chew and Vicki Forman- writers who seemed to value- like me- a balanced, scientific view of autism; who wanted to know more.  Their words presented a strong counterpoint to so much of the hysteria that I read- hysteria that I was keeping at bay in my own life.

I started the blog for two reasons:

  1. to respond to questions that some folks had had about my book- I wanted to give the “rest of the story” as well as have a chance to elaborate on some pieces of the book that may not be interesting/pertinent to the broad readership, and
  2. to reach out to those who had been struggling like I had- to be that voice of integrated scholarship and mothering that I can provide.  I had discovered my “voice” when writing the book- and I wanted to keep talking; I wanted to keep listening- I wanted to keep the dialogue going. About education.  About parenting About twice-exceptional children.  About autism.  About giftedness.  About the intersection of all of those things.

But since I’ve been blogging, I’ve learned that I’m not just reaching out to those whom I wanted to help- people like me who were drowning in the Space Between, but that I’ve made new bloggie friends.  People whose blogs I read, who comment on mine and whose I comment on (See the list to the right).  Blogs that are compilations of some of my favorite posters.  There are even edited blogs.  I’ve learned that although I am a very small speck in a very large blogosphere-  there are corners where you can find each other, you can find friends. 

There is an incredibly rich blogging community out here- a community that I observed when I was on the sidelines, a community that, as a professor, I had no idea existed.  It is a community that is largely ignored by the professional world, but that impacts lives immediately.  When one person posts, others respond. When an issue arises, there are numerous perspectives on it.  I’ve added my blog as part of my professional curriculum vitae-it’s become that important to me. 

There are those who say that blogs are dying- being replaced by Twitter and Facebook.  However, I think that blogs are an in-between… in between the in-depth monologue of the book (even the e-book), and the quick, light, surface dialogue of Facebook and Twitter.  Blogs provide an opportunity for asynchronous conversation that can be thoughtful, funny and in-depth.  Not as in-depth and insightful, perhaps, as wine and a face-t0-face conversation, but those require being in the same space and time- not resources always available to everyone who want to join in the conversation. 

And, at the very least, after a year of blogging, my mother and friends have a better idea of what’s happening in our lives.  And what I’m thinking about- which is probably the most personal part of all.

So, after one year.. I like this place!  I look forward to new friends- reading new blogs, meeting new readers.  I hope to contribute to the blogosphere in my own way- that I have some insights that others might find interesting.  I want to learn more from others.  Heck, I even want to meet up for wine and some conversations with some of the folks I’ve met here.

I like this pool…  Thanks for having me!

January 10, 2011

The Space Between

Filed under: Autism,Book- Parent's Guide — profmother @ 7:09 am

You cannot quit me so quickly
Is no hope in you for me
No corner you could squeeze me
But I got all the time for you, love- Dave Matthews- “The Space Between”

In London, while you’re waiting for the “Tube” (aka the subway, the metro, the large underground train), there is a wonderfully recorded British female voice intoning “Mind the Gap”…. (series of incomprehensible directions)… “Mind the Gap”…   They’re warning you to pay attention to the space between the train car and the platform.  It’s a narrow gap and there are bright yellow lines attracting your attention to it.  I made the mistake of looking down the gap one time when I was getting on the car, and was struck at how dark and deep that hole is.

A girlfriend of mine is approaching that gap.  She’s not in England- she’s in danger of losing her job.  She’s casting about, worrying, wondering.  She sees the line of where her present life might end, and isn’t quite clear about what comes next.  She sees the end, but not the next shore.

I’ve been there; you’ve been there- we’ve all been there. And that gap is terrifying.

That space between this- the known- and that- the unknown.  The space between what was, and what will be.  The space between when you don’t know how deep it is, how dark it is, or how long it lasts.  When was what- even if you complained, even if you whined every now and then, represents familiarity and comfort and stability.  Where you knew what you dreamed about and what you sought to be.  But the gap- that space is one of unknown dreams and unknown directions and unknown challenges and unknown possibilities.  It means living in the moment because the past is too painful to think about, and the future is vague- where you define what is essential to you- your life, your family. 

There are names for this space between.  Depression.  Grief.  Transition. Coping.  Learning.

*******************

We’ve all been in that Gap, that space between- it’s part of growing up.  For me, there have been job losses, sweetheart losses, parental losses.  There have been family shifts that were in that place.  Certainly, the space between is not limited to autism parents.  But if you’ve been there- that unique space defined by the label “autism” and its other hobgoblins-  it indelibly changes you.

In my last post, Elizabeth asked “So, now what?” and her comment brought back to me one of the most powerful “spaces between” that I have ever encountered.  That place where we had a label; we had a name for IT- the whateveritwasthatwascausingproblems- but that was it.  We had a word to Google and we had a word to describe IT.  But then… what then?  We were in that space between- between what “is” and what “was”- vague worry and new realities.  Between not knowing that there were choices, and making decisions.

And while I was in that gap, I was silent.  I was screaming on the inside, but it was everything I could do to talk to my husband and my mother.  I alternated crying with reading.  I had no words when I was in the gap. There were days I could barely get out of bed, and days that I couldn’t go to sleep.  The space between is a place that is dark and muffled and you feel like you’re drowning in a ocean of blackness.  I would swing wildly between throwing my energies into action and complete hibernation.

Therapy helps.  Jess, in a wonderful post, reminds us all how sharing the burden can help- that when you are least capable of asking for help is the very moment that you must ask for it.

Research helps, too- sometimes.  Googling the word “autism” gives you 10 million hits- 10 million stories, bits of information, truths, a few lies, products, lots of studies and even more speculations.  Nowhere in those web pages did I see something that said “This is what it is for you.  This is what it is for Elizabeth.  This is what you should think, feel, and DO.  This what you can expect and this is what you should dream.  And this is what you can no longer plan on.  This is what your new normal is.”

For that, I learned to read blog posts by mothers going through it; I learned to read books by mothers who had gone through it, and I learned to read blogs by people with autism and Aspergers.  They couldn’t tell me about MY family, or my normal, but I could see their “normal”.  I could see how the science of research turned into the art of living.  I could see how they had made it through the ocean of their between-ness onto their own more stable shore.  

For now- because one of the things you learn about this shore on the other side of the space between is that it changes, it shifts, and the presence of the space lurks.  A major moment like a milestone or a holiday can put you back there; or a minor moment like a glance from a stranger. 

Having reached our own shore, our own place of understanding what this the whateveritwasthatwascausingproblems/ butisnowpartofourlivesandwhosheis, I appreciated the ones who had gone before.  People like Mom-NOS, Susan Senator, and Patricia Stacey.  I felt that support as a hand reaching out to me to pull me out of the gap.  I was deeply grateful.  And now, I feel the support of other mommy bloggers who are still going through it with me- not pulling me out, but helping me navigate through it.  And I am deeply grateful.

For that reason, I want to reach a hand back to those who are in their own gaps- the space between identification and a new normal.  The place of “Now, what?”  I wrote my book as a way of helping others- just as I was helped.  I blog to reach others who are Googling.  I know what a community can mean to those who are drowning.

To those folks- and to any others like my girlfriend, I want to say “You are not alone”.

If you are hurt and angry and frightened- you are not alone.

If you are depressed and tired and worried- you are not alone.

If you are struggling with autism, read my book “Children with High Functioning Autism“, read “The Boy Who Loved Windows“, read The Autism Mom’s Survival Guide, read Gravity Pulls You In, read Diary of a Mom, read Elvis Sightings, read Unother One, read Autism Mommy Therapist, read Big Daddy Autism read Ballastexistenz.  You are not alone.

Mind the Gap, but know that in the space between, you are not alone.

January 8, 2011

‘Nuff Said

Filed under: Autism — profmother @ 2:57 pm

The study that so many parents use to justify their decision not to immunize their children is a fraud.  There is NO scientific data to support a link between immunizations and autism.

I talk about it here.

And here.

And it’s here again in national news.

And on Youtube

And even on Aljazeera…

‘Nuff said.

January 5, 2011

She Didn’t Stand a Chance

Filed under: Autism,Gifted,Twice-exceptional — profmother @ 10:01 pm

In the dark days of Elizabeth’s identification, when I was searching the internet and Googling, Googling, Googling; when I was scaring myself with what her future might look like- I remember coming across some interesting characteristics- Aspects of myself.  Aspects of my husband.  Aspects of my family.

In the dark days of Elizabeth’s identification, when I was looking for a reason for… this whateveritiscalledcuz’autismdoesn’t soundquiterightanddoesn’tcaptureitall; when I was Googling, Googling, Googling, and scaring myself with the dangers of the world around me, I remember realizing some interesting things about genetics.  About myself.  About my husband.  About my family.

One day, when I was heaping guilt upon myself- was it the immunizations?  The tuna I ate?  The water I drank?  The food I warmed up in plastic containers? The  yogurt I didn’t drink that didn’t build up the right bacteria in her gut?- my mother, in her very gentle way, placed her hand on my shoulder, and said, very lovingly- “Honey, she didn’t stand a chance.  Between you and James and your families… this is what happens.  You now get to deal with it.”

I didn’t fully believe her until we had Ray… and Ray’s issues.  Now, I look at sweet, cooing, cuddly babies who go to sleep when they’re supposed to, and who cry for short periods of time and who can play games with you, and I marvel.  The running joke in our family is that I loved being pregnant- loved it.  I was one of those Madonna figures- glowing, full of health and aware of the miracle unfolding inside of me. (What did you do today, dear?  Oh, I grew a pair of ears today.  How about you?) I would probably have been a perfect surrogate mother- pregnancy and even birth were relatively uneventful things- as uneventful as a miracle can be.  But the babies.. oh, the babies.

James and I do not make happy babies together.  He and I made two very unhappy, fussy, sensitive babies who slept in short bursts only to wake up unhappy.  Ray would not allow me to put him down, while Elizabeth- very content with being put down on her back- would have hysterics if she were put down on her stomach.  It was a constant guessing game for their first three years- and one that we still play for chunks of time- are they cold?  Tired? Hungry? Has a cloud moved across the sun? Did someone move too fast? Change in transition? Is the dryer/vacuum cleaner/ radio on?  Pearl Jam is good/ Phish is bad?

Conversely, we also made two intensely curious children.  Even without the language to ask “why”, they have always wanted to know “why”.  I was explaining to Elizabeth at 10 months old that the bubbles she was so afraid of were created by soap lying on top of water- and she could calm down.  I would explain the concept of volume and the Doppler effect to my 3-year old son who was freaking out about the change in song, and he would calm down.  We explain about social interactions being a formula- not with numbers but with words (the answer to “How are you?” + a small smile – real eye contact = is “Good, how are you”, and not how you really feel)- and they understand how math relates to behavior.  We talk about analyzing what others are saying and how the teenagers might not like to hear a 7-year old call them “obstreperous” and to keep that word for other contexts- and they get it.  The intense “why” is as hard-wired as the fear and the emotional dysregulation.

And I can’t blame James- for this is what my mother dealt with when I was a baby.  I had heard stories, but it wasn’t until it was the fourth month in a row of no sleep, and colicky babies for two years in a row… that I understood.  When I was a baby, I rarely slept; I cried hysterically;  I hated having my hair brushed.  When I was a child, I read obsessively, pulled out the tags from my clothes, and cried frequently.  I’m an only child… and I think I can guess why.

According to James’ mother, he was a perfect child (of course he was!).  But I see pictures of a quiet, withdrawn little boy who was very, very thin, rarely ate, and rarely had expression on his face.

I look at our two families, with their laundry lists of labels… and I realize… my children didn’t stand a chance.

*******

This was all triggered today, when Diary of a Mom had a beautifully-written, hysterical, touching post- and it drove me crazy, because there are only 11 items on the list.  That lack of symmetry is something I immediately noticed.  I love her post- but I could never have never written it because I would have stopped at 10- or kept on going to 12.

I recognize that my daughter’s tantrums when things are out of order… comes naturally.

I recognize that my daughter’s lining things up according to her own pattern… comes naturally.

I recognize that my son’s intense hatred of getting his picture taken… comes naturally (When I’m prepared, I’m a bit of a ham, but I hate the surprise element- and there is that same brooding look in my husband’s childhood photos).

I recognize that my son’s intense relationship with music… comes naturally.

I realize that my children’s desperate need to know what comes next and to plan for it… comes naturally.

**********

I’m not saying that my husband and I have autism.  We’re  both bright people… with quirks.  Quirks that might have needed attention 40-45 years ago, but by the grace of God, a couple of amazing mothers, and the right contexts, became… manageable.  Quirks that we’ve learned to work with; to work around; to ignore.  Quirks that got strengthened when our genetic material got combined.  Quirks that got focused.  Some quirks that are just… us, and some quirks that became a problem.

Quirks, that when combined with language problems and blood chemistry issues and triggered by whatever is in our modern world, became autism and Tourette’s and giftedness and twice-exceptionality and all of those wonderful labels that define what services and doctors our children see, but do not quite define them.  Genetics plus environmental triggers- pretty much explains most of human development. The apples do not fall far from the trees, but they do form their own shapes.

I asked her, and Elizabeth can’t make a list of 11 things either….

January 3, 2011

Bridging the New Year

Filed under: Autism,Home Things — profmother @ 9:18 am

Jekyll Bridge at Sunset

At the stroke of midnight on New Year’s Eve, we were heading up the Jekyll Bridge- a glorious, wondrous thing that is the highest point around here in this coastal plain.  From atop the bridge, you can see the chain of island, the marsh- and its everchanging tides, the port and its busyness, the paper mill and its pollution, and you can see the ocean. You can see it all- the beauty and the degradation, the vastness and the constant changing nature.  It literally takes your breath away- up on top of the Jekyll Bridge.

We hadn’t planned to be on top of the Jekyll Bridge.  We had planned to stay with our friends in Orlando after a long day at Harry Potter World and the Islands of Adventure.  We had planned to watch the fireworks at Universal.  But after an exhausting day of crowds, noise, and waaaayyyy too much stimulation, our friend’s mother was ill and I was not feeling all that well and you cannot get a hotel room on New  Year’s Eve at the last minute- so we headed for home.  Home and our own beds.  We knew we wouldn’t make it home  by midnight, but I was curious where we would be.

And so we drove on in the dark, listening to music, making light conversation- Elizabeth asleep in the back, Ray taking seriously his job of “Must keep the driver awake” by chattering. It was a light, quiet moment- one that was much appreciated after a day of barely holding it together.  Elizabeth, my sensory-seeking darling, was in her element- she rode every ride; she wandered through the streets barely able to focus on us as the Marvel comics, cartoon characters and crowds attracted her attention.  And she crashed as soon as she got in the car.  Ray… Ray held it together simply because his attention kept being distracted.  He would start to melt down and we would feed him, or we would whisk him away to another activity… Spiderman saved the day on several occasions.  He was so glad for the comfort of the quiet, dark car.  We were all glad for the comfort of the quiet, dark car. 

I drove home- steady speed- perhaps a little fast, since I drive fast- but not too fast.  I had my eye out for crazies, drunks, and other people who are out driving around close to midnight on New Year’s Eve.  And I watched the clock tick down.  As the bridge and midnight grew closer, I thought, “I wonder… Nah.  What are the chances?”  I did not change my speed; I did not stop; I did not alter a thing.

As the clock turned over 12:00, we started up the ramp.  As the clock turned 12:01, we were coming down the other side.  At the midpoint of the midnight, we were on top of the bridge.  At the stroke of midnight, from atop the bridge on New Year’s Eve, you can see the first fireworks from both St. Simons and Jekyll Islands- dual celebrations of light framing the horizon.

I’ve been mulling ever since- what could/might it mean? It felt meaningful.  It felt amazing.

Are we bridging from one time frame of our lives to another?  Are we not quite from here, but not quite from anywhere?  Are we starting a year of transition?  Was this minute given to us to reflect and to ponder and to appreciate the time and the place and the moment? 

I’m not sure, but I lost my breath in appreciation at the perfection of the universe to put us in that precise place at that precise time.  We may not know where we’re going at any given moment, but clearly, we’re where we’re supposed to be. 

And at midnight, on New Year’s Eve, that was on the bridge. 

And yes, we are SO buying a print of the bridge to hang on our wall to remember New Year’s 2010.

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