Tuesday, May 19, 2015

Unanswered questions

When we go quiet on the blog, it’s usually for one of two reasons: 1) things are really good or 2) things are really hard.  Unfortunately, this time it’s reason #2.

Simon has been having a really, really hard time, which means we have been having a really, really hard time.  Laura thinks it’s been since January, but I didn’t really start noticing it until we came back from Disneyland in April.  We can both agree that the last few weeks have been particularly awful. 
Simon’s default setting these days seems to be rage and frustration.  He is hair trigger sensitive which looks like every day multiple things will set him off on a raging tantrum or just flat out stubborn refusal to do whatever is asked of him.  I know it sounds like a typical 7 year old, but magnify it by 10 and that’s more what we’re dealing with.  
He has gotten multiple “red cards” at school, which never happened once last semester.  He’ll be going along fine and then he just goes on strike (we’re sure there are triggers, but no one can figure out exactly what they are).  If you push him too hard or on the wrong day, he now starts hitting/kicking.  It’s to the point that his special ed teacher, who loves Simon, has even suggested that he might do better in a different class. That would mean moving to his *SIXTH* class in four years.  I'm terrified it means he'll just get warehoused with other kids that are too violent/troubled/low-functioning to hang in a special day class and that there won't be sufficient resources to really keep them moving forward.  I don't want him in a holding pen.  If he really needs to switch, we'll be diligent in our research and advocacy, but we are pretty much in a “hell no” place about moving classes right now.

This sudden uptick in intensity and the idea that he might  need to go to another class has sent me down a rabbit hole.  I keep running through all the possible options to answer the glaring question: WHAT THE FUCK IS GOING ON?   
Option 1: Someone is hurting him/molesting him (we can’t identify anytime/place where that would be possible) and that he can’t tell us because he doesn’t have the communication skills.  Worst. Possible. Option.

Option 2: Something is physically hurting him/his heart function is declining and he is uncomfortable and he can’t tell us. Almost as bad as option 1.  

Option 3: He’s just going through some normalish developmental stage that other kids go through at this age or he’s having typical end of the year burn out, but it’s just magnified by autism and is nothing to worry about.  Would be great, but doesn’t seem like that’s what’s up and also, HOW LONG WILL THIS LAST???
Option 4: Now that his heart function is stable and his eating is pretty solid, he finally has the opportunity to feel all the rage, frustration, pain and fight for control that he couldn’t feel when he was younger and all manner of awful shit was happening to him.  I like this option best.

We are pulling in all our resources including someone who is supposed to be awesome with kids on the spectrum (recommended to us by another therapist), getting a neuropsychological assessment to see if there is potentially some brain damage caused by low oxygen/ toxic meds/sepsis when he was a baby, and talking with our ABA team about starting a “sensory diet” for Simon to see if that helps.   

I have had to face some REALLY ugly feelings and fears about our kid being even further out on the margins.  I’ve often used the analogy of feeling like we started out on a train with other parents and when Simon got sick, it was like our car split off from the rest of the train.  Right now I feel like the tracks switched again and we’re getting sent even further out from everyone else. My biggest fear is that he’s about to get shuttled to a track that dead ends. 
He’s getting older and stronger and at some point soon his physical temper tantrums are going to get scary and dangerous.   I’m afraid of what might happen if this behavior continues into his teen years and he tantrums when police are around.  He looks like a typical kid at first but he can’t follow directions, answer a direct question or control himself when he is raging.  If those issues don’t get better by the time he gets to be a teen, I will be VERY worried.  White privilege will help him, but an angry violent man is still an angry violent man to the police.

I grew up in a place where people were really valued because of what they did and how smart they were and how well they performed.  I never realized how deeply I internalized those messages about “value” and “worth” until I had to confront the possibility that my son might never “produce” for our capitalist society.  I am so grateful for the opportunity to dig all that crap out and look at it AND…well,  I’m sure I could have found another way to get to it besides having my son struggle.   
I also grew up with an almost pathological obsession with independence.   Some of it was a coping strategy, but I was also praised for it as a child everywhere I turned.   Through Laura, I have learned to value inter-dependence but it’s still a struggle for me sometimes.  Every time we have to consider a new class for Simon that is a step further away from “typical”, I have a renewed panic about what our lives might be like with a dependent adult child.  What it means for him, what it means for us, what it means for his place in society.  If I can just focus on *him* as this amazing human being that I find fascinating and loveable and charming, I’m mostly okay, but if I zoom out too far, the landscape I imagine is really grim.   Future tripping is never useful but particularly not when my kid is only 7.  I realize spending time worrying about this is absurd and…it’s what comes up.

My Mom has a connection to the head of cardiology at another children's hospital and we're getting to pick his brain about what could possibly be going on.  We may do more genetic testing to see if there are any answers there, since a lot has changed since we first had basic genetic testing done 7 years ago.  Good times.

We have about a month left of school and a summer full of plans Simon is excited about including 3 different camps.  We’re going to try to focus on having fun, getting Simon some extra support and living in the moment, unless the moment involves a tantrum, in which case we’ll fantasize about a Club-Med vacation.


Jen F. said...

No advice, no wisdom. Just a fellow heart mama sending you hugs for the hard days. May tomorrow be a good day.

Anonymous said...

Have you seen the latest theory on kids on the spectrum not having brains where the multiple synapses are trimmed and regulated as the kid grows? it would explain a lot about overstimulation, tantrums and need for withdrawal. maybe Simon would benefit from less activity over the summer?
Mom of teen on spectrum, now heading to college, who benefits from lots of personal space to pusue his own interests.

Malka said...

This is so raw, so real. Thank you for sharing your heart!! Prayers, obvi. And sending a lot of love to ya'll.

Anonymous said...

I am so sorry you all are in the "number twos" right now. I love the fact that you are so open to all of the possible scenarios to account for the uptick in his fervent behaviors, and I suspect that it is likely the last one.
My Gma was/is the sweetest lady, but in losing her mobility and hearing she has been in a nursing facility for 2 years now. It wasn't immediate but in the past 3 months it sometimes shocks me at how impatient she can be, with large flashes of white hot anger at really mild things ("They gave me the wrong breakfast!!! I WILL RAZE THIS PLACE TO THE GROUND!) And my Mom says it's her response to the awareness of her continuing struggle to navigate her new world while knowing she doesn't have the skills to do things she wants. She sees people buzz about, come and go, and there is just no way to sugarcoat the fact that those days are behind her/she cannot enjoy what many of those around her enjoy and take for granted. I pray it's that dawning of realization that is frustrating Simon, because that is something you can work through in time. Easy to say, but just as you look back to the first year after his diagnosis and wonder how the hell you all got through it, you look into Simon's eyes on a good day and remember why it's worth the struggle. Praying with all the love and light I can muster that you will have that moment with this issue very very soon.

Anonymous said...

Just a reader delurking to say - I'm so sorry. I don't know enough of your history to see if you've considered this, but I was just wondering....hearing that he's relatively new to "eating" - could it be food sensitivities? I know this sounds overly simplistic, but I know of many kids who regressed due to inflammatory issues from food sensitivities. Keeping you in prayer.

Joanna M said...

So much love to you, long lost friends! I want to suggest, amidst all the stuff you're looking at, an online resource called "Hand in Hand parenting." It's a small suggestion, in some ways, given the magnitude of what you're facing, but it also could really help YOU. Check them out. We have found the founder, Patty Wipfler, to be quite wise and a helpful parent guide. I thought of this as a resource for you when I read your #4 option. Hand in hand could help you with supporting him if he is indeed needing some significant emotional release from his past. Lots of love to you!

S said...

I am so, so sorry that you are all struggling like this. We are neighbors and I've watched Simon grow up over the years and spoken to you all in brief snatches on Lakeshore. I've been following your blog for awhile. We are in a similar place right now with our son (also 7) and I know how exhausted, scared and white-knuckle tense it makes us feel. The tantrums are HUGE and multiple times a day and seem to come out of nowhere. I've seen our son swing a piano bench at the walls, screaming that we hate him because he made a small mistake with his math. One day he had a conflict with a boy in his social skills playgroup and afterward he jumped out of his booster seat and ran behind the car yelling that my wife should just run him over because he wanted to die. After years of being told that his intensity was a result of developmental trauma (our son was adopted from foster care) we now FINALLY have a diagnosis of severe adhd, spd and anxiety disorder. Which doesn't really tell us what do DO to help him. (He's getting several different therapies right now.) I share your fear of what happens when he's bigger. (My son is black. And we know what happens to black teenage boys who can't control their temper.) And then there was the comment from his therapist who gently suggested that he may really not be able to cope with a school environment. (School is hell. And he goes to school where I teach, which is a challenging tightrope to walk.) Anyway - just offering my empathy. And praying that we both find answers for these boys we love so much.

Anonymous said...

I'm not sure that S Beckett ever dealt with his existential grief any better than Simon does.

In the hospital and nursing home where he spent his final days, Beckett wrote his last work, the 1988 poem "What is the Word" ("Comment dire"). The poem grapples with an inability to find words to express oneself, a theme echoing Beckett's earlier work, though possibly amplified by the sickness he experienced late in life. Died at 83. (wickepedia)

Here is the poem, way beyond my comprehension, though I keep trying to 'understand'

What is the Word By Samuel Beckett
I have recently begun to show the Theological aspect of Beckett's literature and I have come across his last work which is a short crafty poem. In the Gospel of John, "In the beginning was the Word, and the Word was God." Similarly Christ once said that "The spirit of God is within you." If you were to juxtapose 'God' with 'What', and he were as Christ said 'within you'; Maybe you would get something like this?

What is the Word

By Samuel Beckett

folly -
folly for to -
for to -
what is the word -
folly from this -
all this -
folly from all this -
given -
folly given all this -
seeing -
folly seeing all this -
this -
what is the word -
this this -
this this here -
all this this here -
folly given all this -
seeing -
folly seeing all this this here -
for to -
what is the word -
see -
glimpse -
seem to glimpse -
need to seem to glimpse -
folly for to need to seem to glimpse -
what -
what is the word -
and where -
folly for to need to seem to glimpse what where -
where -
what is the word -
there -
over there -
away over there -
afar -
afar away over there -
afaint -
afaint afar away over there what -
what -
what is the word -
seeing all this -
all this this -
all this this here -
folly for to see what -
glimpse -
seem to glimpse -
need to seem to glimpse -
afaint afar away over there what -
folly for to need to seem to glimpse afaint afar away over there what -
what -
what is the word -

what is the word

Shawna Simmers said...

My heart- it's reaching out to you.

You and your wife are amazing individuals, and I barely know you- and I haven't even met your wife. I can only imagine the strength you two posses together, and the love Simon is exposed to every day. It just melts my heart.

After reading this, I posed a question in my head "Can autistic children have Bi-polar disorder?" - The answer is yes, in fact, it is quite common. Also, it may not be Bi-Polar Disorder, but, ADHD, at a very high level. Nothing to be concerned about of course, and I wouldn't ever say medication is the answer. - Just giving you a few ideas to maybe think about testing Simon for. ADHD is obviously very common in children, young adults, and even adults. His attention span is probably short- he may be confused by beginning to understand more than he thought he did- He may be remembering things that scare him- etc.

I am so glad to have met you, and I can honestly say that God put the three of you together for a very SPECIFIC reason. Keep your chin up, always have high hopes, and remember LOVE conquers all. :)