A Head Nod To All Those Out There Fighting The Good Fight

This article really hits the nail on the head:  

http://www.psychologytoday.com/blog/autism-in-real-life/201108/5-reasons-why-autism-moms-rock 

It’s a funny thing….

Which Truck Has Autism?  You'd Have To Get To Know Them To Find Out

I had so much to say about Autism just last week, but sometimes I overload on it (watching movies on it, reading a million books on it, immersing myself in Autism day in and out in every way to better understand Ben’s world) and then I wake up hoping that Autism is not part of our world any longer.  I want it to be a condition he has outgrown or disease he has been cured of for life.  Sometimes I wake up and have that brief moment when I forget he has Autism and it feels like a fresh slate.  Opportunities abound. 

But reality is that Autism is his world.  And it’s up to me to fight for him for all the opportunities he’s entitled too since he can’t at this point.  Whether it’s insurance coverage for ABA therapy (that is, at only 2 hours a week, making a HUGE difference in his world), the school options he has for pre-school next year and beyond, the education he’s allowed when he is in school (all the subjects and not just life skills such as learning to dress himself or take a bath or ride a bus).  I will fight and fight and fight all the obstacles in his way.  Wouldn’t any parent for their child?  Doesn’t every parent believe their child can do anything they want and overcome everything in their way with the help of others and their family?  I do and I sure do hope this is true for all families/children. 

Insurance coverage for the therapies is the biggest obstacle I face for Ben’s progress right now.  The state of WA provides 7 hours a week for him.  Suggested number of hours is 25+ a week.  Budget cuts mean that that’s all that’s available.  And that’s up from 4 in the spring.  We are able to get 2 hours a week of ABA because the therapist is a mental health counselor and it’s being billed as family therapy.  But this is rare and was a fluke to find it available.  Her time is in high demand and 2 hours is all we could get.  Ben is also in a gymnastics class 1 hour a week that I count towards “socialization”.  That gives us 10 hours a week.  15 hours short of what he’s supposed to be getting in order to make a difference in his world.  15 hours a week short of what every child is entitled too in their life.  And we might have a lot more than other kids.  And other kids have much more than us.  While state laws are passing for insurance to cover this therapy, self-funded insurance plans are doing everything they can to deny this benefit for coverage because it “costs too much”.  The cost of covering a child into adulthood with Autism without enough therapy, according to a Harvard study, runs about 3.2 million over their lifetime.  That’s just for the individual with Autism.  There is also research out there that caregivers and parents of special needs kids have a spike in health care costs due to the 24/7 stress it induces.  They can expect to age 6 years for every 1 year of care given to a special needs child/adult.  They will likely die earlier than they would have due to the strain on their entire being.  And what will our kids do then if we parents or caregivers are gone?  The health care system is not set up to take care of these individuals in a way that affords them a decent quality of life.  That worries me all the time, every night when I can’t sleep and every day when my mind wanders about Ben’s future.  We have GOT to get it together as a nation.  Autism is becoming an epidemic in the United States.  If our health care systems don’t catch up, we risk enormous consequences for the future of our community. 

A fire is lit within me every day to make the world better for Ben.  To get him everything I can to help his life turn out differently than it would otherwise.  Join me!  Start within your community.  Any special needs parents could always use a home cooked meal, some errands run for them, someone to watch their child for an hour or so for the parent to take a break or get some much needed sleep.  It’s impossible to understand unless you are living it, but trust me, these parents/caregivers need a hand and a break when you have the time.  Karma comes around and we all help each other when we help our community/circle of friends/schools. 

(Apologies for the long delay between posts.  Ben was having a hard time this week with what turns out to be severe eczema on his burn areas that kept him waking up every night with pain and itching and then the autism would keep him up for 2-3 hours in the middle of the night.  Needless to say, I was tired.  Melatonin caught us up last night and I was excited to post again!)

If you know one individual with Autism, you know one individual with Autism

As the saying goes….no two individuals with Autism are the same, have the same challenges or strengths or have the same developmental path.  The more people I meet with Autism, the more I find I don’t know or can’t know until I get to know them more closely, how it affects their lives.  Even with Ben, I learn new things about his Autism every day.  It seems to come out in new and different ways now than it did 8 months ago or a year ago.  I wonder often what it will look like in a year, 5, 10, 20, 30+ years.  I can worry.  I can also hold hope close to my heart.  I can work as hard as I can to help my son overcome the challenges and build up the strengths. 

Here is a typical day for Ben and I on a weekend.  First, we can talk about sleep.  Autism and sleep have an ongoing war.  Ben either sleeps like a baby for extended periods of time (rarely but it happens) or he is up late taking 1-3 hours to get to sleep soundly.  He can wake up in the middle of the night for 1-3 hours straight at a time.  He can wake up at 4, 5, 6am and be up for the day waking me up with him.  He has acute hearing and if I roll over in my bed in the next room, sometimes he hears it and wakes up and can’t get back to sleep.  It’s hard to even sleep restfully when I’m afraid to turn over or God forbid I have to walk on the creaky floors to the bathroom, then I’m most definitely toast and he’s up.  Recently I started to use Melatonin on really challenging nights to help him get to sleep or stay asleep if he wakes up in the middle of the night (many nights I also take a dose!).  It’s definitely helping, but I’m not a fan of using this often with him or myself.  I’d rather not mess with nature unless absolutely necessary.  Once he’s up for the day, he toddles into my room (yes, that part is still hard to get used to that he’s not a baby anymore and can come into my room as soon as he jumps out of his crib (and don’t worry, he’s in a porta crib until the toddler rails show up to change his big crib over).  He climbs up on my bed and begins to hug me and say “Hi” over and over.  If I don’t get up though, without fail, he will start to hit/pinch/bite/head butt/pull my hair until I either get up or hide under the covers to stay somewhat safe.  We then hit the kitchen for his bottle and/or breakfast.  He has to watch a movie on the iPad in order to be able to sit still long enough to eat for all meals.  Some meals he feeds himself, many of them I still feed him as his gross motor skills are still very rough and it takes a long time for him to eat and he gets most of it on the floor instead of in his belly.  Then the day is up for grabs.  During the week he has therapy after therapy, so I try my best to keep weekends casual and up to him as much as possible.  He needs extensive hours outside each day in order to release a lot of his energy.  We hit the parks for hours.  The beaches.  The playgrounds.  The pool.  Anything that allows extensive movement in a natural environment with few people.  Then it’s home for lunch at noon, nap at 1 and up from 3 or 4 until dinner at 6pm and lights out starting at 8pm (but it’s anyone’s guess as to when he will actually fall soundly asleep again).  We have a pretty rigid routine.  He loves it.  After our return back from Costa Rica, we jumped right back into our routine a day later with sending him to school/therapy and I thought he would not do well so soon.  On the contrary, he had a grin from ear to ear in the car seat as we drove me to work and him to school.  His world is best when it’s the same.  I challenge that with a lot of change/new experiences.  Some days it works, some days not so much.  Ben also has never ending energy.  Literally.  He never stops moving.   More so than a typical toddler.  I often describe him as a pinball bouncing around.  He has trouble focusing for more than a few minutes (if that) at a time.  He does best when he has a set task at hand to accomplish (obstacle course in OT, game in Speech, task request in ABA therapy).  If there is no agenda, he flits around.  But sometimes structure can be too much if there are others also in the group.  Structure alone is his favorite.  Structure with other kids or even adults, is hard for him to bear.  He’s in gymnastics class right now.  He loves the Free Play time periods when there are few kids and lots of open space.  He hates actual class with a lot of other kids to contend with or even the free play because he gets overwhelmed with noise/crowds.  He’s quite smart and I’ve seen him purposefully not complete a task in therapy because he’s just downright bored with doing it for the 20^th time.  He’s a lot like our old Ridgeback, Gretta, who did what she was asked 1-2 times and then gave a look like “why are you asking me to do it again when I already did it?  No thanks.”  ABA forces compliance so that he can learn to focus for longer periods of time.  It helps him to learn how to control his emotions/behaviors so that the meltdowns and aggressive behaviors deescalate.  It helps him to organize his world.  One day this will hopefully transfer into being able to attend mainstream school.

Tonight I hung out with him and read a book (“There’s A Boy In Here – Emerging from the bonds of autism”) while he completely destroyed my hair making it into a rats nest.  But sometimes you have to let him do what he wants so you can do what you want for a little while.  Nothing a brush didn’t fix shortly after we started to get ready for bed.  Days are exhausting.  Nights are too.  I pick my battles these days so we can all keep our sanity. 

I’ll leave you with a series of pictures snapped in succession within about 15 seconds.  Ben loved the new cleaned out fireplace and thought it best to try it out from every angle.  Oh he makes me smile.  Love you bunches little man. 

 

Do You Know What It Feels Like For A Boy In This World (Of Autism)?

There is a scene in the movie Wretches & Jabberers where an autistic Japanese adolescent is saying “good bye” to the two main characters.  He waves “bye-bye”.  It struck me because Ben also waves bye-bye the same way.  These three characters in the documentary are all intelligent, if not brilliant, individuals.  While they used computers and devices that spoke for them as they typed, I was constantly floored at the conversations they had with each other.  Thinking of what that film represents, I am reminded of Ben’s ever increasing awareness and understanding of his world, even when his language does not measure up to engage him with others.  He knows that when he’s starting to get in trouble or caught doing something he shouldn’t, he comes up and says “Hi!  Hi!  Hi!” over and over in the sweetest voice so that one can do nothing but forget what they were going to have him stop doing in the first place.  He also uses “bye-bye” very appropriately and politely when he wants someone to go away that he doesn’t like or want around him.  It comes out so sweet and sincere that you can’t possibly take it the wrong way.  I recall he said it to all the doctors in Costa Rica as soon as they would step foot into our room – “Bye-bye!  Bye-Bye!  Bye-Bye!”  While he had nothing against the doctors and nurses themselves, he surely didn’t want them to poke and prod even more than they already had that week.  This happens at every doctor visit and there are numerous visits for developmental pediatricians, ENT’s, ophthalmologists, orthopedic surgeons, plastic surgeons, naturopaths and ER visits.  It seems like I’m always scheduling the next doctor appointment for him.   He has a smaller pool of vocabulary than neuro-typical toddlers his same age.  He has some echolalia, repetition of the same word or the last word someone said, on certain days.  He will often repeat me when I tell him “no”.  He counters with “No!  No!  No!” over and over again. Ben also might have some apraxia of speech and we are watching him with his speech therapist over the next year to see how he develops.   He has some OCD developing lately with his favorite items….Trucks and Cars!  Most of the day he has to be holding 1-4 cars/truck toys at a time and gets very very upset if we take any way.  He recently started to sleep with them (or at least fall asleep with them) and the first thing he says when he wakes up in the morning is “Ttttrrrruuu(ck)” (he’s working on the last syllable) or “Caaaaar”.  He can hear them going down the road what seems like a mile away.  Sensory integration is another challenge.  He craves big big input.  He moves the furniture around in our house.  He loves to pick up very heavy items.  To crash into the couch.  To hug.  Oh the hugging.  He’s known for his amazing hugs.  And he gives them freely to every beautiful woman he passes on the street.  It’s very adorable.  I do wonder how that’s going to play out as he hits his teenage years and older.  He has a weighted vest that he sometimes wears to keep his center and give him the feeling of being hugged at all times. 

While his speech/language and repetitive behaviors are challenging, the hardest part of being the parent of a child with Autism at times are the behavioral episodes.  Meltdowns are intense.  Sure, I can tell when he’s just having a temper tantrum because he wants something or is “faking it” per se.  But meltdowns are usually brought on for him by sensory overload (too loud, too many people, too bright, smells are too strong, temperature is too hot or cold) .  In these episodes, the SIB’s occur as well as behavior towards myself or his therapists or Julie, his nanny.  He hits.  He pulls hair (out in clumps).  He bites.  He pinches in a way that can make you yelp.  He head butts your head (I’ve had a black eye from him early on when he was only about a year).  He throws things and scatters items.  He screams a very high pitched scream that I associate with his autism.  He hits his own head on the wall, the floor, tables, anything he can find or hits his head with his hands.  He bites his hands.  He pinches himself.  Anything to make the overloading input stop or enough output to counter balance it.  If we don’t warn him before a transition it can be a major issue in his world.  Flexibility can be his downfall some days.  Waiting for anything is a mounting obstacle currently. 

His brain is built differently.  Receives information and transfers information differently from neuo-typical people.  Bottom line is that he can’t help much of what he does right now.  Therapies are trying to grown those brain neurons in a different direction.  The key to early intervention is that the child hasn’t finished brain development and it’s easier to guide them into the proper path originally than have to retrain the neuron pathways once they are formed.  But everything is unknown right now.  It’s hard to hear “he’s going to be high functioning” when no one really knows yet and as a parent who wishes for the moon but keeps feet on the ground, we have to hedge our bets and be ready for any direction our children take with regard to their Autism.  I will do everything I can to help him live up to the potential we all wish upon him and love him no matter where his life leads. 

I see the intelligence rather than the inability in Ben.   I see strengths rather than deficits.  Please see them also when you look at Ben. 

“Are you Ben?” I say to my 28 month old son this afternoon, like all other afternoons.

With a pat on his chest with an open hand he replies “Ma!”  Not entirely clear on where he came up with that name for himself, it has stuck for the last month.  And I delight in it as I think it’s very funny and clever but also because it shows me that he finally understands the concept of himself as a separate being from me in this world.  

This is “Ma”.  (And I’m “Mama”).  He was diagnosed with Autism on April 12^th, 2012.  He was evaluated in Feb/March and I was told it was likely.  But you hope.  Secretly you hope.  You want to brush away all the real obstacles that face your son every day from sensory overload to self-injuring behavior (SIB).  My beautiful dark twisted nightmare is more real than of the imaginary realm.  He’s made incredible strides in the last 10 months with early intervention therapies from speech, OT, ABA and cognitive preschool.  In Jan. 2012 he had regressed to 4 words, his SIB’s were at an all-time high, meltdowns happened throughout the day and I didn’t know what was wrong.  I had an idea.  I had asked his pediatrician many times and was told “no, all boys are delayed” but after more than one day and night of violent meltdowns and hurting himself, I decided I needed to have him evaluated sooner than later.  He’s been receiving amazing therapy at The Boyer Clinic and Lakeside Center For Autism.  I’ve joined an incredible support group for parents of children with Autism in ALLY from the Seattle Children’s Autism Center.  Ben and I have an incredible nanny to care for him and shuttle him from therapy to therapy while I work full time.  Julie keeps our world glued together!  We’ve made big strides from the beginning of the year to today.  Ben is up to around 55-60 words, while regularly saying 20+ along with sign language.  Meltdowns still happen most days.  Attention spans are still under a minute at a time unless he becomes fascinated with a thread on my clothes or a central air vent in the house.  He notices every little detail.  He makes solid assessments of those who cross our path and he’s always been right about the person when he likes or dislikes someone.  I trust his judgment.  He’s had incredible circumstances to overcome since his birth from multiple surgeries to burn accidents in foreign countries to hours of therapy a week that no other two year old has to endure.  I am amazed at my son every day.  

Ben and I struggle together, we win together, we relax together and we learn together.  Life was not supposed to head down this path for us and who knows why it did, but it puts us in a slightly different world than the rest of the neuro-typical world.  I’m learning a foreign language every day about Autism alongside my son.  I have become a voracious reader and researcher about Autism and everything around it from therapies to cures to legal concerns.  Ben lives it.  I can never know exactly how his world sounds or feels or what his daily experience is like.  He’ll never know mine.  That one is tough.

At the end of the day, there is a voice inside me that is pushing to be heard.  To advocate for my son and myself.  To help the rest of the world be more compassionate and less judgmental.  As with any Spectrum parent, we all want these things for our children because we fear how the world will receive them once they start school, enter the social dynamics of the world or look for work.  All spectrum parents ultimate fear resides around if/how our child will be cared for as an adult.  We fear dying and what might become of these amazingly different humans once our care giving is no more.  We all want to change the world for them now so they don’t have to struggle later.  We all want to know that we’ve given them all the hope we can for the best life possible through the opportunities of therapies/medications/support.  I want him to live until he’s 150 and enjoy most of those days independently if possible as he grows up.  I also want to know that my life will have more to it from this point forward even with all the challenges we face around Autism. 

“I don't wanna be someone who walks away so easily
I'm here to stay and make the difference that I can make
Our differences they do a lot to teach us how to use
The tools and gifts we got, yeah, we got a lot at stake”
- Jason Mraz