Reflections of and on a probably Asperger's parent parenting an Asperger's kid (or 2)!

dragon pups

dragon pups

Thursday, October 18, 2012

Further on SPD and Swimming

Time to follow up on what I published earlier this year, to be specific about how I see SPD playing out in swim lessons.

Incremental Learning/ building physical tolerance
Much like Sensory Integration therapy (SI) - the student has to be exposed to the stimuli many many times over a long period in small steps - in other words: GO GENTLY.  With swimming in particular, parents become VERY invested in seeing success, because it is a safety issue.  There is a cultural perception that swim lessons will "drown-proof" a child - and that is simply NOT true.  It is VERY, VERY frustrating to watch a child be so afraid or reluctant that they do not perform the "assigned task", but the point is that their body HAS to teach them. There are 2 main factors in this dilema: parental expectations and the length of traditional classes.

Don't get me wrong - this is NOT a "preach at the parent" moment - this IS a learning moment.  Really ask yourself - WHY  did you enroll your child in the class?  What IS it that you expect your kid to get out of swim class?  Many parents are enrolling their kid in a swim lesson because this is one of the child's first experiences with "formalized schooling" - They expect the kid to be able to hear and perform the instructions of another adult and be in a group of peers.  Swim lessons can do that - but the adults around them have to remember that this experience is compounded by the novelty of being in the alien environment of water itself.  Maybe the parent's goal IS to teach or hone life-saving aquatic skills (make them better swimmers).  If that is the case, then watch - observe, and remember that teaching is most successful when it comes in digestible pieces.  What skills ARE your child lacking? Which do they already exhibit?  Do they have the motor control to actually do that movement?  The hardest part of swimming is that the body is performing several tasks simultaneously, often alternately - so it's like patting your head, rubbing your tummy, chewing gum, and keeping a rhythm with your toes and then switching every 7 seconds.  There is a LOT going on there! 

BE PATIENT.  

That is hard to do with your child under any circumstances, but especially when you are so concerned to see that progress that will make you feel confident about their safety.  Like the adage of special needs parents - celebrate the small successes.  Focus on just one skill at a time, submerging, flutter kicking, breast stroke pull.  Even at the competitive swimming level, this is what they are doing - concentrating on the minutia of a movement until it becomes MUSCLE MEMORY.

And that is where the length of the class is a problem.  Traditionally swim lessons are 8 1/2 hour sessions (that is what the Red Cross curriculum is set up for) - so 4 hours of instruction time.  Think carefully about that.  What skill did you learn in just 1/2 an hour?  Have you ever mastered a new skill in just 2 weeks?  Middle school classes are typically 45 - 55 minutes, and it takes kids 9 months to "master" a topic!  Having realistic expectations about what your child will take away from the class is VERY important, as well as understanding that it is just a starting point.  A 1/2 hour class is not really long enough to allow the kind of practice that builds muscle memory - it allows the kind of practice to explore.  And the hard truth is that while there are "correct" processes and movements to swimming, each and every body swims in a different fashion.  I can't tell you how many parents come to class concerned that their child can't float.  Well, if your kid is finishing a growth spurt and has no fat to float on, then you're right - that kid won't float - at least not flat.  The kid needs time to explore their own "center of bouyancy" - which is not the "center of gravity".  Your kid has been trying to coordinate their arms & legs to run and play for several years by the time you hit swim lessons - and now the water moves the center of their body!?! CRAZY!

Remember too, that "success" is about visualizing too.  It is known that athletes visualize their actions, and that it can greatly impact performance.  The truth is we do that for ALL activities.  In the special needs world (and experiential education) we call it "front loading" - letting people know what is expected of them before they engage in the activity.  "We are going to the grocery store - you are expected to touch the cart at all times. You will not be getting any candy or soda today."  "We are going to pass this hula hoop around this circle without letting go of each other's hands.  You will have to get your feet and legs through"  "You are going to chaperon this field trip.  Your role is to keep your student group together between formal instruction sessions." - It's about making expectations clear, about making sure that the person doing the thing can see themselves doing the thing before they actually do the thing.  As adults we use this skill all the time, because we have been taught it and had plenty of time to practice it.

Kids need that too.  They need to see the swim skill demonstrated, and then they need to practice it so that they can feel the movement (it is hard to see underwater, but it can be a useful tool to do so with goggles for strong visual learners).  Moreover, they need to think about doing it.  The biggest bursts of success I see are when the classes are a week apart.  The kid has had all week to talk about the movement, listen to parents encouraging the movement, interact with the movement in their head - and they demonstrate a better mastery of the skill a week later.  The extreme example is my own son.  For 2 years he would walk up the diving board - in a life jacket - look at the life guard and say loudly, "Don't worry! I am not jumping in! I am just looking!" - and he would.  For 2 long summers we watched him do this several times a week.  I REALLY wanted to throw him in, to just get him over it (and I did a couple times and would see regression - he wouldn't go on the board as often), but eventually I just left it alone (he was in a life jacket).

Finally one January (clearly NOT pool season), he says to us, "This is the summer I will jump off the diving board." - very matter of factly.  Ok, we'll see..., but we did talk about it all winter.  Sure enough, May came and the pool opened.  We went opening day, and he walked to the board several times, but not up it.  After 4 hours I finally prodded, "So, is this the summer you are going off the board?"  "Yes"  "Do you want to go now?" "Not yet" "Ok, how about at 3 o'clock?" "Ok".  Two minutes later: "Is it 3 o'clock yet?" "No, not yet" - two minutes later: "Is it 3 o'clock yet?" "No, not yet" - two minutes later:"Is it 3 o'clock yet?" "Yes [fine!], it is close enough".  He marched right up to the board, walked to the end and jumped off - no hesitation, no life jacket.  This example is pretty extreme, but if you just sit and watch kids at a pool, they do it all the time.  They see if they can submerge a little deeper, or jump in a little deeper, or even just run farther before they jump in (which is not a safe behavior, I have to add).  As I watch families visit all summer, I can see a kid move to a deeper section of the pool with each visit, pushing themselves to grow skills, to explore new movements, to go faster.  We often see it with the "jumping into chest deep water" activity.  A student starts at the chest deep depth, and will do it several times during class, and then after class work themselves down the wall to deeper water - often for over an hour.  If they "scare" (I like to say "surprise") themselves, they go shallower for a few minutes, but they always come back to conquer the goal they set for themselves. 

The best way to support your child's ability to swim is to come to the pool often so they can practice on their own terms. That kind of learning is self-teaching - the brain and body will remember it longer - but: 

IT TAKES TIME.  

Language
I have often said that the strength of SPD discussion to me is that it provides me a language to describe what I see.  Being able to verbalize your fears always makes them more conquerable.   It also allows us to be specific.  And the seeking/ avoiding aspect of SPD lets people make correlations between their actions (or the actions they observe in others).

VESTIBULAR: This is that sense of balance in the inner ear. One of the most mentioned concerns with teaching swimming (by concerned parents and in training tips) is reluctance to float.  When I see that behavior in toddlers I immediately ask if the child has reluctance to tilt their head back for hair washing too (a textbook example of a vestibular avoider).  How about swings?  Does that kid who is reluctant to float avoid swings too, or demonstrate a low tolerance for them?  Adults do that too - by avoiding roller coasters.  Or is your kid a vestibular seeker? Do they hang off the couch upside down often? (Yeah, I totally did that as a kid, and knew it made me "feel " better, but not why).  Are they having trouble floating because they are busy turning over/ feeling their body move?  Once we can identify associations outside the water, then we can "treat" them/ "practice" them outside the water.  My son definitely conquered being horizontal in the water (the major milestone of successful swimming) by conquering swings through the winter. And talking about what they are feeling, gives them more control over what they are feeling.  

I did an interesting experiment on my husband - who is amazingly physically awkward (visually so).  At 40 years old, he had never floated, so I asked him to lay in the water while I supported him.  He did (BIG trust moment), but the insight is not that grown-ups have sensory issues too - it's that he is old enough to describe to me what he felt.  After floating for no more than 2 minutes, he stood up and weaved on his feet for nearly 4 minutes.  He did say that propioceptive input (hugging and submerging to the shoulders) helped him "re-center" and be able to walk straight again.  While this example may seem extreme, consider that he has gotten though his whole life without ever having to deal with this sensation.  If your kid doesn't like laying in the water, or swings, or vestibular input, they may be having this extreme reaction and can't verbalize it to you!  Help them build that vocabulary.... "Hmm, does laying in the water make your head feel like it is spinning?"  "Are there circles inside your head?"  "Does the swing make you feel like it is hard to stand up?"  "Does it feel good to hang upside down?"  Use your instincts - think about what YOU experience, verbalize YOUR sensations, and give them room to disagree with you!  Their body is theirs, and maybe they feel something different, but by opening the discussion, you give them the room to label their sensations, compare them,  conquer them.

PROPIOCEPTION:  This is that idea that the joints register pressure in the nerves to define where they are in space.  The theory explains why kids trip over their own feet, or hit too hard, or don't like being hugged.  As adults, this often at the heart of a couple's cuddling debate.  In therapeutic use, we use it "center" the body, to calm the "hyperactivity".  It is the exact same "technology" that the "Thunder Shirts" for dogs uses - and that swaddling babies uses.  It comes into play with water because - water is heavy.  I have read in one occupational therapist's Facebook [Raising Sensory Smart Kids - a book too] that many propioceptive seekers submerge to feel the water "hugging" them.  I would imagine that propiocetive avoiders (I don't have one, so I have to extrapolate here) are bothered by the weight of the water on their body, much like a weighted blanket would feel like it entraps them.  Validating these sensations with vocabulary, with labeling them, creates a skill to build instead of a vague fear to avoid.  The body will still need to be dosed in small increments so as not to overwhelm, but the process (and oration of that process) of creating small goals and meeting them will empower the learner.  "Does the water feel like it is hugging you?"  "Can you feel your hand pushing the water against your legs?"  "Do you feel your feet coming out of the water when you kick?  Try keeping them in the water..."  "Let's try submerging just to our belly button... just to our elbows... just to our shoulders..." 

2 points/ asides about this: it is because the water is heavy enough to feel like a blanket that it is strong enough to hold you up when you float - it IS denser than air, and that density is what pushes the body.  I also noticed with my son (who is clearly a propioceptive seeker of incredibly awkward body movements) that his body moves more gracefully, more purposefully, with more coordination after we have spent weeks in the water.  We usually spend a full 6 - 8 hours at the pool several day a week during the summer, and he is by no means in it all day (like his body hits some kind of plateau, but he always comes back to it. As if his body is learning by the comparison?)  I would postulate that the extended opportunity for him to learn & practice movements, at his own pace, to control his environment and keep "pushing that envelope" ingrains that muscle memory piece.  Seekers are known to need more stimuli to register a sensation and the water gives a constant increased "pressure" on his limbs as he moves in it.  Our OT has also pointed out to us that he is much less "bouncy" during summer/ swim season - and we see the furniture bouncing and body slamming return when the pool closes.  Of course, the kid's body grows every winter and he "loses" his body and has to "redial" it in again every summer...  I urge you to look for/ observe patterns in your child.

TACTILE:  There are 2 aspects to this that need to be explored.  One is the sensation of water on the skin.  I kinda think that one might be linked to propioception - like the difference between being brushed up against and banged.  Water tends to be gentle - so maybe the movement of water on the skin really does "tickle" people?  I don't know that I have ever heard someone say that in those terms, but I think it is a strong possibility.  Again, incremental exposure is the best "treatment".  People learn to not be ticklish - or at least control their reaction.

The second has to do with water in the face.   I am not sure that "tactile" is the best category for this, but I am not sure where else to categorize it.  This is a complicated discussion.  It is absolutely normal to react with anxiety when the face is covered in water (like submerging the head) - I would argue that it is an instinctive life preserving reaction.  In fact, we take advantage of that when we teach the Mommy & Me swimming.  Infant's bodies automatically hold their breathe when their face is wet or blown into.  We reinforce that instinctive response by counting down to submersion and praising its accomplishment - moving the unconscious act into conscious control.  I think it is a similar thing as you get older - about controlling your body and environment, about creating consciousness of what the body does without our thought.  This is a pretty deep thing.... 

I have 2 insights, kinda techniques, that I have used to address this.  First: when I was very small and my grandfather taught me to swim, one of the few things I remember distinctly is when he talked to me about coming up out of the water - like when you are pulling up on the side.  I remember him directing us to look down as we came up - and he explained himself: the water can only flow down, so if you are looking down, then it cannot flow up to your mouth, nose, or eyes.  I have a vague memory of him saying it would get the water out of our eyes faster.  I have to say I have done this as long as I can remember, and that I remember thinking as an older child and as a competitor in high school that it gave me a sense of control when I was pushing my envelope (longer swims without breaths) - I knew I could get air.  In fact, this is really what breathing during the front crawl (freestyle) is all about - using your nose to create an air pocket for your mouth as you turn your head.  It's about controlling your body to control the water - knowing you are in charge, not a victim of the water.  This kinda leads to my second technique - the shower.  I often recommend to parents to "practice breathing techniques" in the shower.  While some people are rather defensive that their kids can take a shower, what I mean is that submersion of the face can happen in the shower.  The example I give about my own kids:  I was afraid they would squall during baptism, so I spent several weeks dousing them with water.  I started with sprinkling, but then I would pour a half a cup, and then a whole cup directly over the center of the head.  They instinctively held their breath, learned that it ended shortly, and actually started to look down to protect their face.  Anyone can practice this in the shower.  I find that I tend to spend most of the time in the shower with my face out of the water, but you can actually practice the whole looking down thing in the shower by putting your head squarely in the spray - gain control of what is happening/ start with the familiar and slowly add new sensations [EXACTLY what SI therapy is about].  Once you're OK with it, you can even play with/ adjust the angle of your face and test new sensations...  

Interestingly what most kids and adults I have worked with do orate is that they are uncomfortable with the sensation of "water in their eyes."  You can totally practice getting water in your eyes in the shower!  And the water in your shower does not have chlorine in it like pool water....  Though in all honesty, it is NOT the chlorine that makes your eyes burn - it is the pH of the water.  And the water from your shower will make your eyes burn 'cuz the pH is not balanced (in the middle of the spectrum)... if you can handle opening your eyes in the water in the shower you can totally handle it in a well maintained pool.  Even without the chemistry lesson, it's about controlling how your body reacts to stimuli.  If water in the eyes is the problem, then address it, in a place where you feel comfortable/ strong - in a manner that gives you a sense of control - appreciating each small success as you build it - and it will lead to you being confident that you can control your environment in general - and you will control your reactions.

And THAT is my point!  It is ALL about breaking down the steps and building up the experiences so that confidence is gained - because CONFIDENCE will create a safe swimmer - fear ALWAYS leads to sinking.  One of the primary safety rules the Red Cross teaches is:

Think, so you don't sink!

And the SPD conversations give us a new perspective to think from, because the answers do NOT always lie in the pool!

Wednesday, October 10, 2012

Sufferring

So today, I killed 2 mice.

They were stuck in a sticky trap laid out by our exterminator, over 1 year ago. As in the trap was a year old, the mice were still alive.  One was very small, the other bigger and very vocal.

A baby & parent?

The baby was laying in the glue, whole belly, NOT getting out, and was clearly exhausted.  The adult had pulled off it's tail and one leg in an effort to get off the glue.  It even lunged off the tray when I picked it up to put it in a bucket.

I know this is the "order" of the universe, and removing those mice from my home protects MY children from disease, but it was very, very difficult to watch the suffering and feel the fear emanating off them.  I needed to help end their suffering.

I called my dad for ideas, and we talked through options.  The best way to end their lives quickly without creating more opportunities for hurt (like me being bit, or my dog getting into poison) was to step on them.  My dad talked me through it, and I did.

I prayed for their pain to end, for the sacrifice of those tiny lives to reach God and be honored.  I feel REALLY REALLY bad right now, VERY dirty - like Lady MacBeth.

The problem is that I am just SO in a belief of connection, that every act is related to another. My mind seeks symbolism in every thing I see.  I am convinced that EVERYTHING happens for a reason, and that this occurred just today because I needed to think about it.

A parent sacrificing itself for a child who just made a bad choice.

Unfortunately that sounds AMAZINGLY like what we have been dealing with the last few weeks.  My son did not deal well with a transition last week. He was with a babysitter, in a public library, and he made an untimely outburst that was VERY hateful and exaggerated   The very timing of it indicates that he knew it would be impactful.  The babysitter has been falsely accused before of child abuse, and the whole incident, in such a public venue renewed her fears.

My first thought was, "Welcome to autism - trapped in your own home, fearing misunderstanding and unsolicited 'help' at every turn" - for YEARS my husband and I have talked about such incidents.  My son made threats to teachers and classmates at school, it was a BIG part of the reason we took him out and decided to homeschool, for fear that his violent outbursts and inaccurate descriptions of how he hated being at home and hated us would lead to... investigations, or actions.  We have been told that these are typical of Autism, that the lashing out with violent words or actions is the "behavior that is communication for those who cannot communicate".  I understand EXACTLY how that works - but my son CAN communicate - he has MANY MANY words - talks incessantly actually.  And while I can definitely say that he lives in an alternate universe in his head, he DOES see how his actions impact others and has shown active manipulation of others.  

FEAR underlies all our outings with him, just like it does for so many families on the spectrum...

Then I realized how concerned she was, and how real that fear is.. that people DO get accused falsely, incorrectly, and that maybe it IS only a matter of time before someone tries to take my child because they misunderstand his reality, or he misunderstands ours...

How do I arm him?  How do I protect him when he will not protect himself, or cannot protect himself?  What should I be sacrificing to save him?  I have sacrificed time and money and career, and his sister's schedule, and our friends....  Will I truly die, making a small fatal mistake trying to save a child who cannot be saved?  Which of the myriad of mistakes is that last mistake, the one too far, the one that will not let me come back to protect my other children?

God, please honor the sacrifice of those small souls, of those whose suffering I caused directly and those whose suffering I caused indirectly.  Please forgive me for causing suffering.   Please help us in our family's journey, to help us avoid the pitfalls, to control our responses, to solve problems instead of create them.   Dear God, PLEASE protect all of us, from each other and from ourselves, so that the dynamic we are creating will support growth for all of us.  Please let the suffering be manageable.  And God, IF the suffering  is great, please send someone along who can show us mercy and at least make it brief, but PLEASE do NOT let it reach THAT.... please.

UPDATE:  The next day, we went to OT - her observation?: his meltdowns/ outbursts are zero to huge too quick - there is no build up, so we can't see any triggers.  He needs to be seen at the university ASAP and we should look VERY closely in Seasonal Effective Disorder...  I am NOT crazy, I am NOT making this shit up, it IS insane.

This weekend we had a cub scout camp out - he was AWESOME - a few meltdowns, but on-point when he needed to be - did a skit with no hesitation, went to bed when told, ate what he was offered, played well with others.  After camp out we did a corn maze, only upset in competition with his sister, asked his daddy to buy a honey straw for each member of the family in our favorite flavors (and accurate with that) - totally lost it when we got home.  Refused to help empty car & clean-up - started talking about death and killing and just ran a stream of unpleasantries through the whole process.   How is it that he is "here" with us one minute and just NOT the next?