Just Keep Swimming…

It’s been a few extra days, courtesy of some stress that has made it difficult for me to think straight enough to write.  The new stresses are, in no particular order:

• Finally receiving eval info from the town preschool, only to find that none of it is in compliance with state timeline rules.  I did question the director about the late dates that were offered, and pretty much got a bunch of excuses.  (We’re swamped with new kids this quarter, we don’t want to evaluate too early and have things change too much before the IEP goes into effect, etc.)  So basically I could FIGHT, as in claws out, call the Dept. of Education and complain, etc. or let this first snafu slide for the sake of starting our relationship with this school on a positive note.  I’ve chosen option 2, grudgingly.  Rest assured I will have an army of professionals who already know and work with Luna deeply involved in the IEP process so it is in her best interests.  I cannot say that this has been a great first impression of the school for me, though, which is hard as I have already sent two children to a private preschool that we loved.
• A number of recent news stories exposing special education workers treating the children in their care deplorably.  This is not helping the trust issues I’m already developing regarding the aforementioned school.
• My yearly physical, where it was discovered that my blood pressure is slightly elevated, and now has to be monitored for a couple of weeks at home, which meant purchasing a monitor and the working through the ensuing stress/guilt cocktail involved.  I’ve gained some weight recently since I had an ankle injury last summer which prevented me from being able to get adequate exercise, and I just never got back around to much self-care since, with everything else we’ve had going on.  But I suppose I’ll have to figure something out – you know, with all my spare time.
• Various family dramas that would serve no good purpose being detailed here, but have been detrimental to my personal stress levels and time management.

So yeah, I got derailed a little.  I have been trying to start a personal project focused on letting go of control.  I despise the powerlessness that comes with saying “What’s coming will come, and we’ll meet it when it does,” (props to Hagrid and JKR).  Especially since being pushed into the special needs parenting pool, I feel so bound to not only advocate, but to anticipate problems and head them off; to never have to say, “I should have looked into that further,” or the like.  It’s a sort of self-invented burden – I brought Luna into the world so I have to make sure the world does right by her.

I’m reading articles and blogs, doing a bit of meditating, trying to carve out time for non-parenting hobbies that relax and distract me.  Feel free to comment if you have succeeded in leaving some things to Fate, God, or whatever term you use.  I’m happy to hear suggestions.

The Hard, the Sad, and the Guilty

Things I say to Luna every day, multiple times:

• Look at me.
• Use your words.
• We jump on the trampoline.
• Chairs/couches are for sitting.
• Not in your mouth, please.
• Here, use this if you need to chew.
• Wait.
• Stop.
• Ouch, that hurts me!
• We don’t stand on that.
• Please don’t touch.
• No throwing/dumping out food.
• NO!

Having an ASD child after typical children brings with it some unique challenges.  I’ve been struggling with some of them this week.  Perhaps the most significant one is getting used to a totally different developmental track.  See that list up there?  By the time my two older children were turning three, I was finished using many of those phrases, and certainly wasn’t using them 10 times a day.  By three, H & G were using sentences and rarely had major difficulty telling me what they wanted.  They were daytime potty trained, so no chasing someone down to wrangle them out of a dirty diaper.  They didn’t have perfect table manners, but they had outgrown chucking food onto the floor or dumping out snack bowls of pretzels “just because”.  They knew most of the rules for using toys, and only needed the occasional reminder about safety and “appropriate” play.  The had a basic sense of our house rules, and it was possible to leave an item of mine on an accessible surface for more than two seconds without it be stolen and/or destroyed.

Luna?  Yeah… she’s not there yet.  She’s as big, strong, and agile as a three year old, but with the self-control, retention, and empathy of about an 18 month old.  I’m not used to it, and some days, like today, it frustrates me.  I know it’s not her fault, and I know we’re doing everything we can to get her closer to her biological age in these areas.  Still, I’d be lying if I didn’t sometimes fantasize – after the 27th “no”, or being whacked in the face with a toy truck, or re-injuring the ankle I hurt last year by chasing her down because she didn’t listen when I said, “stop” – about life with a neurotypical three year old.  I admit that watching other parents relax in their plastic chairs because their three, four, even two year old kids can play on the beach or in the yard without an adult at arm’s length, makes me jealous.  Then I feel like crap for giving in to that negativity.  At least she’s physically healthy, and least I was able to conceive her in the first place, at least she’s making progress in the therapies that at least we have the coverage to pay for.  At least, at least…be grateful, count your blessings, it could always be worse.

There are new things that I say to Hermione and Ginny every day now:

• Put that where your sister can’t get it.
• Help me stop her/get that from her please.
• Can you watch her while I go to the bathroom?
• Don’t do/say that in front of Luna or it will cause a problem.
• You need to play somewhere else during Luna’s therapy.
• I can’t take you/we can’t go to ___ because Luna has therapy.
• I can’t take you/we can’t go to ___ because it will be too difficult for Luna to handle and I have no one to watch her.
• Only Dad OR I can go to your ___ because one of us has to stay home with Luna.

Talk about feeling like crap.  Some days it feels like there is simply no way to avoid disappointing someone.  Sometimes I think there’s no way we’ll all make it to the other side without emotional scars, and maybe even some physical ones.  Those are the times that I think autism is bullshit.  Not my daughter, not her wonderful, unique, precious self – just this stupid neurological twist that takes the simplicity out of so many of the little pleasures of life.  Yes, sometimes I’d like to wave a wand and wish it away.  Not to change my child, just to make life easier for her… for all of us.

If that makes me a bad mother, guilty as charged.  Lord knows I’m used to guilty.

Squirrel!

As much as there will always be encounters with people who don’t understand or are intolerant of autism, we are blessed to have many friends and family members who really want to connect with Luna and get to know her as a person.  There aren’t words to express how thankful I am for that.  I only hope that they will be diligent in their efforts and refuse to get discouraged, because Luna’s not the easiest girl to connect with.

I don’t mean to suggest that she is not social – we are lucky in that Luna is playful, affectionate, and does not have hypersensitivity to touch at the moment.  She hugs, kisses, tickles, tackles, and engages in rudimentary, simplistic conversation.  (“What color is the frog?”  “Green!”)  However, most of this interaction is reserved for us, her immediate family – Arthur, Hermione, Ginny and myself.

One of Luna’s challenges is that she is highly visually stimulated, meaning that she is easily absorbed and sometimes overwhelmed by the sights around her.  This is usually heightened when she is in a new place, visiting someone else’s home, or in a complex sensory environment like outdoors or at a busy, noisy birthday party.  She is also a sensory seeker who loves to run, jump, and climb at any opportunity.  The more that is going on around her, stimulating her senses, the harder it is to pull her focus onto one task or person.

She sees friends and family members at parties, in public places, at the beach, the park, etc.  The trouble is, social environments tend to also be stimulating ones.  Hence the title of this post – no matter how hard people try to engage her, there always seems to be a “squirrel” to distract her.  So those interactions tend to go something like this:

Well-meaning Friend/Relative:  “Hi Luna!  What are you playing?”

Luna: Continues playing, completely ignoring the questioner.

Well-meaning Friend/Relative:  *Excited gasp of enthusiasm* “Wow, is that Dora?!”

Luna:  ZOOM!  Runs off to throw herself, belly first, onto the swing, without verifying whether the little figure in her hand is Dora or King Kong.

I suppose all children are most invested in their parents and siblings at times, but I do occasionally feel bad that Luna seems to care more about her umpteen (amazing) therapists than the lovely friends and family members who want so much to be part of her world.  The beauty of the therapy relationship, though, is that it is built around maximum avoidance of overstimulation, which is the key to busting down Luna’s social/sensory walls (much like the Kool Aid man) and saying “You WILL Pay Attention To Me, Kiddo – OH, YEAH!”

So basically, I implore anyone who wants to befriend my little sweetheart to have faith and be persistent.  It will definitely be worth your while when she is able to tune out enough of her surroundings to happily say, “Oh, hey – it’s You!”  There is nothing quite so satisfying as having her intentionally shower you with attention and affection.  It is humbling and heartwarming to know that she finds you worth the work she has to do to focus.  So keeping saying hello, keep asking her questions, and/or try to keep up with her interests.

Or you could come to the house 3 or 4 times a week, sit on the living room floor, and play exclusively with her (without TV or other media) for 2-3 hours at a time.  Chances are she’ll say your name after 3 months or so.

Your choice.  🙂

Born This Way

I believe that Luna was born with autism, because from the moment she came into our world, something was a little different.  She was born in the wee hours of the morning, at a hearty 9 pounds, 2 ounces, and for much of the next morning she remained in that woozy newborn stupor – eating, sleeping, and being passed around between her parents and sisters without much complaint.  By the afternoon, she had started to get a little more fussy, but at the time I assumed she was just “waking up” a bit more and experimenting with her voice. 

When evening came, I suggested that Arthur go home with our older daughters to give them some parental attention and their normal bedtime routine, and to sleep in our comfortable bed rather than the medieval torture device that was provided for fathers to sleep on in the maternity ward.  I felt confident that between myself and the nurses, Luna and I would both be fine overnight, and since we live not far from the hospital it would be simple for Arthur to return bright and early the next day.

As the hours passed, Luna became fussier and more difficult to console.  As luck would have it, a difficult labor and an emergency c-section left the nurses at our small community hospital spread very thin, and there was no sign of anyone coming to bring Luna to the nursery to complete some of her standard newborn care while I rested.  Eventually, the fussing became more like screaming.  I thought Luna might have inherited the gastric reflux that had plagued her big sisters in infancy.  Sore and exhausted, I shuffled back and forth across my room, doing that bouncy little “mommy dance” and rhythmically “Shh, shh, shh,”ing in Luna’s ear.  We finally found our groove and she began to calm, but it was clear that putting her down was out of the question. 

After a while, I was able to carefully ease myself into a rocking chair and at least continue the rhythmic soothing off my feet.  I tried to watch television to keep myself awake.  Every damn channel seemed to be covering John and Kate’s impending divorce.  Awesome.  (There really ought to be a sarcasm font.)

I was embarrassingly relieved when a nurse finally appeared at 2:30 am to bring Luna to the nursery.  She had quieted, but she still seemed a bit tense, which was making me tense.  I readied myself for sleep and did my best to get comfortable in my lumpy hospital bed. 

Two and a half hours later, the creaking wheels of Luna’s bassinet woke me.  (I’m quite sure I didn’t actually sleep for that whole period.)  In a rather clipped tone, the nurse told me, in essence, that the nurses were too busy and Luna was too needy for her to stay any longer.  Looking at my chart, she suggested that perhaps Luna was having “withdrawals” from a medication I had to take for the last few weeks of my pregnancy.  Somehow I doubt she ever received a Best Bedside Manner award…

Luna evolved into a fairly easy baby – I tend to gravitate toward routines as a mother, and she seemed to be equally content that way.  I had a difficult time with postpartum anxiety, so we spent a lot of time at home and in other familiar comfort zones rather than piling into the SUV and traipsing around the county each day, and that suited us both.  She never was diagnosed with reflux.  It wasn’t until Luna was around 15 months old that I began to grow uneasy about her lack of speech, her enthusiasm for television cartoons, and her constant chewing on things.

Looking back, though, I have to wonder about that first desperate night.  Could all that misery and discomfort have been her autistic brain and nervous system reacting to the stark changes from the womb to the outside world?  The bright lights, the loud noises, the separation from my steady heartbeat, the smells, the textures?  I suppose I’ll never know, but I suspect that Luna processed things differently from the very beginning.

Why Are We Here?

I suppose my first responsibility is to make my intentions for this blog clear.  This is a forum about personal truth – a window into my unique world with my family and our experiences.  I’m not here to act as an autism expert.  I don’t plan to tell other people how they should raise their kids, live their lives, or view issues surrounding autism spectrum disorder.  I’m not speaking for anyone but myself.  I have opinions on what works well for US, but I recognize that those opinions might not apply to other people’s experiences, and I would not presume to know best for anyone else.

While I look forward to the possibility of hearing from others in similar situations, I hope to remain inclusive of all.  When Luna was diagnosed last year, one of my first concerns (for myself) was, “I don’t want to be pigeon-holed by this.”  In other words, I didn’t want the act of parenting a child on the spectrum to forge some great divide with “autism families” on one side and “everyone else” on the other.  I didn’t want a developmental condition to define me, my daughter, or my family.  Human society tends to encourage splitting ourselves up into categories,urging us to stay with “our own kind.”  I don’t believe that I should limit myself to learning from and befriending those who are personally affected by autism.  Nor do I believe that I will become best friends by default with every other parent of an autistic child.

I don’t view autism as positive or negative – it just is what it is.  I’m not perfect, of course – I have my “why me” moments.  It is painful when tasks are harder for Luna than they are for other children.  Still, I only get to do this living thing once (as far as I know) so I don’t want to spend it feeling bitter, angry, resentful, or tragically misunderstood.  I’m just a parent doing my job.  When people say, “I don’t know how you do it,” I usually think, “Neither do I – but what choice do I have?”  My mission as a mother is to do the best I can for my children, so I do, based on the needs of each individual child.  Luna’s needs may be more complex, more time consuming, etc., but that’s all right if her best interests are being served.  It is my job to accept my children as they are, and be the mother they each need me to be.  Hermione overextends herself, Ginny won’t eat vegetables, and Luna has autism.  It’s just the cards we were dealt.  Any burden autism places on me can’t possibly be more than what it places on Luna.  I imagine she works harder than I do on a typical day, just to make sense of the wacky world around her.  (And it’s getting wackier all the time, in my opinion!)

Hopefully I’ve given you a basic overview of my philosophy as it relates to the topics I write about here.  If you’re still game, feel free to read along and see where the journey takes us.  If not, that’s ok too.

Best,

Molly