Take Me Out To The Ball Game!

Friday, April 29, 2011

TheLastSixBrainCells: Holiday traditions + sensory issues = ........

TheLastSixBrainCells: Holiday traditions + sensory issues = ........

I specifically took this picture of our son Hayden holding this egg close to his mouth (he was actually smelling it) because I wanted to remember this moment; after all we had been waiting for it for over 12 years!! "Waiting for 12 years for your son to hold an egg?", you ask...."you people seriously need a hobby!!" Yes, and yes!! This photo is significant because Hayden has sensory integration issues along with having T21 (commonly referred to as Down syndrome) and it's ALWAYS been nearly impossible for him to hold smooth things in the palm of his hand.

This year, for the FIRST time ever, he not only held the egg in his hand and smelled it (it briefly passed the smell-test, but he quickly handed it over to me, not wanting to prolong the relationship with the elliptical sphere), he also joined the rest of the family at the table outside where we colored the eggs for Easter. For those of you who have kids with sensory issues, you GET why this is a big deal and a big victory and you're probably smiling right now along with me.

For those of you who don't have kids with sensory issues, you would have been part of the crowd that for years has just thought Hayden was weird, or spoiled or "touchy' for not being able to even be in the same ROOM as a smooth and shiny egg (or shaving cream, or cotton balls, or play dough). That's okay, I forgive for your ignorance because to the uneducated it just doesn't make sense what's such a big deal about an egg. And in the heat of various moments of being at playgroups with Hayden, family gatherings, public outings, etc...I never had time to fully explain what "sensory" means to him, but now I'm making a feeble attempt at a blog and will try to explain this as simply and practically as possible.

When a child has sensory integration dysfunction it means that the messages that fly between the nerves and the brain stem along the neuropathways don't often get to where they're going in order, or in a timely fashion. Ever seen photos or video of rush hour in Boston or downtown Cairo?? It looks like a red-hot scary mess and that's kind of what it's like for a kid with sensory issues. Some sights, sounds, textures, touches, tastes, etc... are just TOO much for them to handle. And so they don't. Kids might run away, hold their hands over their ears, scream, kick, throw the offending object, not be able to come to the table or a variety of other reactions, but they're telling you they just can't handle it.

So this year, after years of being coaxed, cajoled, begged (never by me, always by people who thought they were "helping" him by forcing him to face his fears) and nearly forced to be in the same room as the Easter egg coloring festivities, Hayden sat on the couch and I brought the egg to him. His initial response was really good....he took the egg from my hand and held it and investigated it, smelling it. And then he was done with it. He put in my hand telling me he had enough, and that was fine with me. I did have to coax him to come outside and join us at the egg coloring table, but once he was seated, he was happy to be there and he even picked up a few of the eggs his sister had been decorating (much to her delight--not!!).

So all of you out there with kiddos with varying degrees of sensory integration dysfunction, hang in there!! Continue presenting your children with a variety of textures and smells and experiences, but don't force anything. Our kids always do what they can do when they can do it and not a minute sooner.

Holiday traditions + sensory issues = ........

Mom's On Vacation, But The Kids.......

Let's get one thing straight: vacations for homeschooling parents are FOR the parents!! Homeschooling is something we DO and my children are both ALWAYS learning, so when I say we've been on "vacation", I mean I'VE been on a vacation from "formal instruction" and MY schedule has been more relaxed. The week before Easter DP and I played numerous games of "Uno", a game that she has just recently developed a taste for and a game which she is enjoying greatly (and those of you with kids on the spectrum know that it's important to jump on those opportunities of shared interests whenever they present themselves!). This past week we went to a different beach everyday, getting lots of exercising and exploring our amazingly beautiful coastline.



I share these photos not to be one of "those moms" who has to document and explain every nugget of learning their children unearth, but rather to remind MYSELF that learning is EVERYWHERE and "just" spending time, no, correct that; INVESTING time with my kids is THE most important platform for learning that there can be. I have to say that aloud to myself almost on a daily basis because in our culture we are bombarded with messages that learning is only valid if it's done while sitting at a desk in a classroom, or that a kindergartner "should" spend at least SIX hours a day in formal instruction (that was one of the first things someone very close to me told me when we first started homeschooling, I swear to you. I should have been horrified and come up with a quick response, but I was too ignorant). Or get this one, definitely one of my favorites from the past year: a friend was very happy when her son passed his weekly "pre-spelling test" in his Kindergarten class and therefor would be exempt from the regular spelling test. In KINDERGARTEN!!! And don't EVEN get me started on the pressures within the homeschooling community; "what curriculum do you use?", "what co-ops are you involved in?", "my kids go to all the homeschooling gym classes at the Y....how come we never see you there?".....and the list goes on. So these photos are to remind me that we ARE doing the work of learning, regardless of what family members, the neighbors or anyone on any of the listservs thinks....Hope you can see the fun and joy that we share!

Talking to a fisherman on Manhattan Beach

The marine biologist and her trusty assistant

Happy scientist with her specimen jar

THe highlight if the day! (sea slug)

Petting the sea cucumber

A very happy Newf in her own tidepool

Baby sea slug

One if the many starfish....

Soft shelled sea urchin

What Mom Did On Her Easter Vacation

Let's get one thing straight:  vacations for homeschooling parents are FOR the parents!!  Homeschooling is something we DO and my children are both ALWAYS learning, so when I say we've been on "vacation", I mean I'VE been on a vacation from "formal instruction" and MY schedule has been more relaxed.  The week before Easter DP and I played numerous games of "Uno", a game that she has just recently developed a taste for and a game which she is enjoying greatly (and those of you with kids on the spectrum know that it's important to jump on those opportunities of shared interests whenever they present themselves!).  This past week we went to a different beach everyday, getting lots of exercising and exploring our amazingly beautiful coastline. 

I share these photos not to be one of "those moms" who has to document and explain every nugget of learning their children unearth, but rather to remind MYSELF that learning is EVERYWHERE and "just" spending time, no, correct that;  INVESTING time with my kids is THE most important platform for learning that there can be.  I have to say that aloud to myself almost on a daily basis because in our culture we are bombarded with messages that learning is only valid if it's done while sitting at a desk in a classroom, or that a kindergartner "should" spend at least SIX hours a day in formal instruction (that was one of the first things someone very close to me told me when we first started homeschooling, I swear to you.  I should have been horrified and come up with a quick response, but I was too ignorant).  Or get this one, definitely one of my favorites from the past year:  a friend was very happy when her son passed his weekly "pre-spelling test" in his Kindergarten class and therefor would be exempt from the regular spelling test.  In KINDERGARTEN!!!  And don't EVEN get me started on the pressures within the homeschooling community; "what curriculum do you use?", "what co-ops are you involved in?", "my kids go to all the homeschooling gym classes at the Y....how come we never see you there?".....and the list goes on.  So these photos are to remind me that we ARE doing the work of learning, regardless of what family members, the neighbors or anyone on any of the listservs thinks....Hope you can see the fun and joy that we share!

Finding My Meaning

I just read an article by Brian King:  http://spectrummentor.com/2011/04/28/meaning-life-autism/.  Read it for yourself right now.  If you have a child on the spectrum or a grandchild or the child of a friend, read it.  Brian is a GREAT writer, a great communicator who also happens to be on the spectrum and is the parent to three children who are also on the spectrum.  He knows whereof he speaks and he speaks well.

Now, I don't necessarily AGREE with everything Brian has stated in this article but it certainly has challenged me to FIND MY MEANING in having a child with autism.  For years I can honestly say I was in the "fix it" mode.  We knew from day one (literally) that our daughter had profound sensory integration dysfunction.  (It's hard to miss the signs when your newborn is constantly arching her back and raging upwards of four hours a night) So armed with our suspicions, we procured the best early intervention supports and services for her that we could.  We were blessed beyond reason in that endeavor and had absolutely the three best pediatric occupational therapists in the state working in our home with our baby and also with her older brother, who also has special needs.  I wasn't prepared for the reality of not being able to fix her and I confess that's led to no small amount of resentment on my part.  I've slipped into old patterns of thinking that I was somehow in control of my world and taken on the entitlements of,  "if I do this....then such and such will happen"......"if I work hard in my career, I will achieve a level of success",.......if we provide this baby will all the right kinds of therapy then her brain will heal, it will form new neuropathways and we won't always live in angst and turmoil".  Well we're eleven years into this and while we have countless beautiful memories for which I am VERY grateful, there's also been no small amount of drama, that not even our closest friends and family can fathom.  Indeed, if our close family members had any idea what our day to day lives were like, they'd probably be shocked.

I've been out of the "fix-it" mode for awhile now but I can definitely recognize from reading that article that resignation has crept in, which has bred a spirit of futility.  I need to break that because it's not helping me and more importantly, it's certainly going to help my daughter develop and grow into the unique person that she was meant to be.

The part of the article where Brian has a "pretend" conversation with his view of his Higher Power is interesting too.  I definitely don't subscribe to the finer points of his theology, but I can certainly appreciate his view that God created a variety of people to help us GROW.  There are so many ways having my daughter has helped me to grow.  Perhaps if I spent more time counting the ways in which she has helped me grow and less time naval gazing and feeling sorry for myself for all the difficulties, I would appreciate my time here on earth with her more.  She IS special and she IS very engaging and VERY sensitive.  She has a VERY tender heart and wants very much to hear the voice of God in her life.  That alone gives me more than enough for which to be thankful and in which to find powerful meaning for the rest of my days.

Monday, April 18, 2011

We May Not Be Sane, But We're Goin' To Disneyland

News of upcoming trip to The Happiest Place On Earth has been delivered and Day Two Of Obsessive Planning & Hyper-Focus is lingering like a bad toothache. Today's activities: counting all available loose change and demanding IMMEDIATE exchange for paper dollars, then canvassing the neighborhood in an effort to sell old belts. Note: parental units DID NOT know that she was trying to SELL articles of clothing to the neighbors. In hindsight we now understand that these are topics to be addressed IN WRITING before allowing an Aspie to leave the house.

Friday, April 15, 2011

How NOT To Keep A Homeschool Blog

I want to keep a homeschool blog.  Really I do, it's just that to keep a homeschool blog, I'd actually have to write stuff down on a farely regular basis and the only thing I'm good at doing on a fairly regular basis is brushing my teeth and feeding my children, not necessarily in that order.  But I'd really like to keep somewhat of a log of what we do (other that what I'm keeping tracking to comply with the state of CA regs when it comes to homeschooling), just so I can maybe someday remember what my strategies and plans were.  But now that I think about it, it's really not a homeschooling blog that I'm not keeping, it's a "life log", because homeschooling isn't something we "do", it's who we are.  It's hard to pull apart the life skills we're constantly working on, from the character traits we're trying to grow in our kids and separate them from math, science, history and language arts.  For me, it's all in one big pot of stew that we call life.  But I guess for the sake of keeping things somewhat clearer than mud, I'll try to separate out what most people think of as "academics".

So here goes:  right now with Hayden we're working on a lot of core issues like balance, crossing mid-line and building up leg strength by taking walks and having him ride his bike.  Okay, MAKING him ride his bike.  Yes, folks, it's Boot Camp For The Bug.  He really doesn't enjoy riding his bike because it's work for his legs and he's really not here on planet Earth to work up a sweat, unless he's sitting in a hot room while watching "Signing Time".  But I feel very strongly that the more we work on building up his physical  stamina, we will build up his mental and cognitive stamina to stay with a task for longer and longer periods of time.  Am I right?  Only time will tell.  

We're also continuing with his reading program, working on stacks of words nearly every day.  Some days he whips through 50-60 words signing them with ease, other days he looks at me like I have three heads, like "why are you showing me all these scribbles?".  It's life with Swiss Cheese.  I try to do puzzles with him often, sometimes he will tolerate them, but most of the time he tries to shove them aside.......but I don't think it's becasue they're too easy, I think it's because he's just not interested in solving them.  I try to only give him a couple of choices.....sometimes it works, sometimes not.

With Miss DP, I've scaled back the "drill & kill it" methods of times tables and long division.  It was just FAR too much drama and she was way too stressed out.  So she's working out of a logics workbook, which while it's VERY challenging, she seems to enjoy.  We're also working on her internal organization and listening skills with a workbook that stresses main ideas of the various topics it covers.  We've learned that with Asperger's comes a lack of inherant ability to organize thoughts and sort out what's important and what's not.  This can lead to a lot of internal and external chaos.  With this workbook she's also working on her spelling skills, reading aloud skills and she's learning more and more how the dictionary can actually help her solve problems and figure things out, like what part of speech a particular word is.  This is a daily, "pennies in the bank", kind of process.  My hope is that she's learning that she CAN learn, and she CAN figure things out for herself.  This is the tough part for me:  how much do I "help" her without spoon feeding her all the information (which of course isin't teaching at all), because there are MANY moments with Asperger's when the child, MY child, just can not process the information.  It's a minute-by-minute thing.  I wish there was a blueprint, but everyday I awaken to a blank slate.  She's doing great though and all we ask is that she try, which she does everyday.

Saturday, April 2, 2011

Be Aware, Be Very Aware........

It's Autism Awareness Day and I've been thinking about what I want my friends to be aware of when it comes autism.  The first thing that comes to mind is that the autism in my daughter probably doesn't look anything like the autism you've seen in your child, your friend's child, the classmate of your child, or the neighbor kid down the street, because autism truly DOES look different in each child, because each of our neurologies is so unique and special.  The second thing I want you to be aware of is that YES, we are sure that our child is indeed on the autism spectrum, so please don't ask me to justify it or prove it to you because it's not readily obvious to you, but do feel free to ask questions if you're truly curious.  Autism IS a very interesting pathology and I do like talking about, but I don't have the energy to convince family members or strangers on the street that my child REALLY is on the spectrum.  The third thing I think I want you to be "aware of" is that autism in and of itself is NOT a curse so don't feel like you have to be sad or despondent about our child's diagnosis.  Many of the days we spend with our kids who are on the spectrum are pretty good.  Our kids have so many innate gifts and have very creative ways of looking at life and solving everyday problems.  But some days are not so good and some are even very, very bad.  Please be aware that on those bad days when we look like we haven't slept in a decade or we're wound so tight we can barely move our arms, that we can't hear things like, "oh that's just how a typical four year old would behave", or "my 11 year old son says the same things!". 

Trust me now when I tell you that our lives ARE fundamentally different at a cellular level.  We want to relate to you and your family, and in some ways we can.  Our lives aren't worse, just different.  When our kids back-talk or refuse to follow an instruction, like, "please use soap AND water when you bathe" (and they're 16 years old and they have to be be told to do this everyday), or they can't stay at a restaurant, party, park or any kind of public gathering because it's too noisy and "chaosy", it has a cumulative exhausting effect on our spirits.  In the heat of whatever battle is going on, there are many, many times when we as parents have absolutely no recourse because autism (at least for that moment in time) is in the driver's seat and while we can explain ourselves to our child until we are blue in the face, it will not change the outcome of that situation one little bit. 

I think the last thing I want you to be aware of is that our kids are totally precious to each and every one of us.  Although it may seem to you that all the confusion, angst and mysteries that autism brings to our family would be completely overwhelming, at the end of each day we know that our lives are richer because our special kids, with their special ways of looking at life, are loving us the best way they possible can.  And I, more than anyone, need to remain accutely aware of that.