Jinx

Well, I did it again.  Jinxed myself.  In my last post I mentioned how normally after we have overnight guests, the day or two after they leave R will have frequent crying bouts and meltdowns as he processes the stress that he had bottled up during their visit.  This has never not happened.  Until this week, when after we had family visiting for Christmas we went two days post-their-visit without incident.  Homefree.  Or so I thought.  Mere moments after publishing my post this morning, R began getting fussy.  Over the next several hours he became increasingly unhappy.  Little bouts of crying turned into big bouts of crying, and by 3 pm, full blown meltdowns.  The next four hours were awful.  I put him to bed early and I can still hear him sniffling in his sleep from the next room over.

If I hadn’t shared my excitement over his lack of bad day after visitors this time, would it have happened?  I know logically my choosing to share or not share, feel excitement or not, should have no impact on the future.  So why does it always seem to, against all reason?

Going to bed.  Tomorrow will be better, God willing.

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Good Stuff

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Happy kid.

Sometimes I worry that I do (or will) write too many posts about negative things.  It can be very therapeutic to process difficult situations and emotions by writing them out, so I often get the urge to write during times of stress.  When good stuff is going on, I feel a lot less urgency to write about  it.  I’m busy enjoying it, and am more apt to share it verbally with others, or on Facebook.  Whereas when I am dealing with the negative side of things, I am often uncomfortable discussing it with family and friends.  I hope for this blog to be more balanced, and include the good stuff along with the hard stuff.

So here’s some good stuff.

Holidays.  My little guy did amazing over the holidays.  We had family visiting for two nights.  In total there were 7 people staying with us from out of town.  In years past we always spent Christmas with my parents, and my brothers would come out too.  Because R’s anxiety is such that it is not feasible for us to stay overnight at my parents’, everyone decided to come to us this year.  I was a little nervous about how R would do with so many people in his space.  He was a rock star.  When he needed a break he retreated to either his spinning chair, or doing his circuit across our kitchen counters.  Several times he allowed his grandparents and uncles to play with him by him tickling him and picking him up to spin him around or toss him.  It was really nice to see him able to not only tolerate everyone being there, but also have fun with them at times when he was feeling safe and receptive.  This was pretty significant progress compared to previous visits.

Generally, even when he does well with visitors, after they leave he lets out any bottled up stress that he’d been holding in.  We usually see a day or two of crying a lot and frequent meltdowns before he is back to himself.  We were expecting this to be the case after our holiday guests left.  I don’t think it has ever not happened.  But incredibly, this time it didn’t happen.  He was just happy!  We could see he was relieved to have his house back to himself, but there was no release of stress.  No crying bouts or meltdowns.  I thought, okay, well maybe it will come tomorrow.  Maybe he’s still holding it in.  But the next day (yesterday) was the same.  One very happy little R!  This is pretty huge for him!  It means that his stress levels and anxiety stayed at manageable levels despite having visitors.  I think he was probably self-regulating really well with his retreats to his spinning chair and his comforting back and forth circuit on our counters.  He is developing coping skills and that is going to be invaluable for him going forward.  I am actually seriously considering buying a second spinning chair for him to use at school.  Hmm…

The ball pit.  R has been going to a local special needs sensory gym since he was first diagnosed a year and a half ago.  I mentioned it in my previous post.  They have various equipment- 3 different types of occupational therapy swings, exercise balls, tents and tunnels, balance boards, sit-and-spin type toys, ride-on-toys, a sliding board, a quiet room with a bubble lamp and fidget toys, and a play room with developmental toys.  They also have a ball pit.  When we first starting going there R only used a few of the items.  But by 6 months in, he was using everything except the ball pit.  He was fascinated by all the brightly colored balls, but became frightened if I placed him in the pit, and would scramble out as quickly as he could.  A year later, and he was still too intimidated by the ball pit.  Until last week.  Completely out of the blue, he went for it, and he loved it.  You can watch the magic here.  This dude is awesome.  He does things on his own timeline.  When he’s ready, it happens.

Problem solving.  R scores severely delayed in cognitive skills. He scores in the low 50s (the mean being 100, like on an IQ test).  I have read that our kids often score well below their true cognitive level, particularly when, like R, they have low receptive language and are nonverbal.  However, I have noticed that R struggles to problem solve in very simple scenarios.  While it is far too soon to know if he is intellectually disabled, I think that his cognitive delays are real, and not just a matter of Autism masking his true abilities.  Last week my husband and I were discussing the fact that R had not yet figured out how to push a chair or box over to a place he wants to climb.  He loves to climb our kitchen counters, but requires a chair to boost himself up.  We leave one for him when we are letting him climb, and slide it away when we don’t want him up there.  Even if it is only 10 inches away from the counter, he would just cry, and never try to push it those few inches to the counter to be able to use it.  This kind of problem solving is present in one-year-olds, but just weeks from his 3rd birthday, R was not yet able to work it out for himself.  As if he had heard us discussing it last week and had been contemplating it ever since, this morning, first thing when he woke up, he confidently pushed a bar stool several feet until it was against the kitchen counter and proceeded to climb up like it was no big deal.  You go, kiddo.  You got this.

Down The Hallway

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The first hallway R is working on walking down at his school

Yesterday R walked with his sped teacher from the school lobby, down the first hallway, and around the corner to the hall where his classroom is located.   This is huge.  His school ST and OT were there, and everyone in the front office- the principal, the school secretary, and the school nurse- came out to watch and congratulate him and us.  R does not even start school for another 6 weeks.  Let me explain.

R has extreme anxiety in unfamiliar places, and I use the word unfamiliar loosely here.  We generally have to visit a place several times per week for several weeks in order to acclimate him to it and put it on the “familiar” list of places that he tolerates.  During those first weeks, he will scream and cry, melting down the entire time.  He does not calm down after a certain amount of time passes.  Having favorite foods, toys, or activities at the unfamiliar location does nothing to reduce the difficulty.  He will still need weeks of regular practice exposing himself to the environment, no matter how many of his favorite things are there.  If we go less than twice per week he never adjusts at all.  Often, places that started out with weeks or months of meltdowns go on to become favorite destinations once he has adjusted.  We knew that school would be no exception, in fact, school would be harder because it is such a large place.  He has to adjust individually to each part of the school, both outside and inside, and each hallway or room he needs to be able to enter.   So when school started for my older two children in September, I opted to drop them off and pick them up each day so that I could take R along and give him regular exposure to, at the very least, the outside area of the school grounds.  This was still 5 months before he would start school himself.

At first he would burst into tears as soon as we parked.  He would not walk, so I would carry him, as he cried, from the car to the drop off point, or, after school, from the car to the pick up point.  As weeks passed, the crying lessened and he began walking on his own while holding my hand.  At this point one of his therapists suggested I request permission to begin walking him into the school, and, ideally, work on walking him down the hall toward the preschool classrooms.  I asked the special education liaison, who told me I had to ask the school principal.  The principal agreed, but said that legally I could only go as far as the entry lobby unescorted, so she asked that we work on that for now, and see what we can do once he has mastered that area.  I agreed readily, because that alone would take a month or more.  So every day we walked to the drop off point at the bottom of the school steps, I said goodbye to my older children, and then walked up the steps, into the school, and worked on taking steps closer to the hallway he would eventually need to travel down.  At first he screamed.  I was embarrassed because I didn’t know if the principal had explained what we were doing to the front office staff– the front office adjoins the lobby to the right of the school entrance.  But I pushed the embarrassment aside and focused on R, because if we could do this it would have a huge payoff once it was time for him to start school.  I would open the door, take just one step in with him screaming, then I would immediately praise him, turn around and take him right out.  The screaming faded to fussing, and I gradually added 2 steps, then 3, then 4.  Soon he was no longer fussing until the moment we stepped just a little too far out of his established comfort zone.

His IEP meeting was scheduled for 2 months before his 3rd birthday.  Two weeks before that, the school conducted his evaluations.  At that point he was comfortable in the school lobby, which we had been practicing, and the cafeteria, which was where we went every afternoon for parent-pick-up to get my older two kids.  The evaluations required us to visit one of the preschool classrooms however, and that was way beyond R’s comfort zone.  I had warned the team ahead of time, but I don’t think they understood how bad it would be.  After an hour of screaming and crying they agreed to conduct the evaluations at my home instead.  When the day of our IEP meeting arrived, we candidly discussed how crucial it would be to accommodate R’s transition needs.  They had all seen first hand what it is like when he has to enter an unfamiliar environment.  The team offered that the special education teacher (for the self-contained classroom he will be placed in) could begin meeting us at the lobby and work on taking him down the halls and to his classroom over the next two months.  Other team members chimed in that once he was accustomed to the sped teacher, they would like to begin joining him as well so that he can get to know them before his official start date.  We were very excited and grateful for their willingness to do this.  The sped teacher met us the very next morning.

For the last 4 weeks we have met each morning.  The teacher made R a book with large pictures of each part of the school he will travel, in chronological order, pictures of his classroom, and pictures of herself and his school therapists.  She opens the door for us, greeting R warmly, crouching down at his level, and works on helping him take a few more steps each week.  We decided to introduce a treat to make it more positive and enticing.  R loves chocolate chip cookies, so I baked dozens of mini, bite-sized cookies and put them in a container for his teacher to keep at school.  After he takes his steps, a little further each time, he gets his cookie, as well as plenty of praise and encouragement.  This last week he has really begun to gain some comfort and confidence walking down that first hallway.  Realizing that he can walk again and get another cookie if he likes, he has started walking down the hallway with his teacher 2 or 3 times each morning before we say goodbye and head home.  We have gone from spending about 3 minutes there each morning, to spending a solid 15 minutes.  Last week his school OT and ST began joining us as well.  He has had a few weeks to get to know the sped teacher, and they felt it was a good time to introduce some new faces.

And that brings us to yesterday, the first day that he completed the entire length of that first hallway, an enormous grin on his face and a bounce in his step.  I thought he would stop there, but to everyone’s delighted astonishment, when his teacher scooted around the corner a few steps he took the plunge and followed her around that corner, and out of sight of me, the lobby, and the exit  (which he normally makes a point of checking visually for security).  There were misty eyes all around, and at that point we had gathered a crowd.  The school nurse squeezed my arm and said “it’s like he’s a totally different child than we used to see!”  And I was just so happy that they were all getting to see the child I see every day.  The sweet, happy, cheerful little boy with huge dimples and an infectious laugh.

This was huge.  Yesterday was huge.  I am so proud of R.  He is so brave, and I love watching him meet these challenges and defeat them.  There aren’t really words for how proud I am of R.  But you know what else is huge?  This school.  This group of people going above and beyond to support a child that is not even their responsibility for another month+.  The special ed teacher and therapists are investing over an hour per week now working with R.  They have taken time outside of that to make him a picture book, to email me and consult with some of our other therapists to better prepare his program for when he starts.  We owe the principal great thanks for allowing us to do this at all.  We are also thankful to the front office staff for their kindness, tolerance, and support, instead of thinking of us as an annoyance.  Every way you look at it, this is huge.  And we are just so grateful.

In The Tunnels

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Image by Tom Blackwell* 

I have always been claustrophobic, for as far back as I can remember.  When I was a child I was not able to reason through it as an adult can, so it was particularly painful back then.  Something as simple as being in a room with a closed door was terrifying.  We moved around a lot, and the first thing I did whenever I got my room at a new house was to plan out my escape route in the event that I got stuck in the room.  Planning how I would get out– through the window, from the window to the roof to my parent’s balcony, from there down the drainpipe to the ground– was a ritual that allowed me to feel safe in my own room.

We lived in Europe growing up.  One year, when I was 11 years old, my class took a trip to visit the old underground mines in a nearby mountain where, hundreds of years ago, miners had constructed a maze of tunnels beneath the earth.  We had to take an elevator down to the start of the tunnels, and it felt like we were going miles underground.  My fear was squeezing me tight before we even got off the elevator.  When we arrived, our teachers explained that much of the tunnel we were going to go through was too small for an adult to fit through.  The miners of so long ago had much smaller bodies than today’s adults.  We were told to follow the tunnel through to the end where the teachers would be waiting for us.  In America I don’t think this kind of field trip could ever happen, but in this particular country** it was no big deal.  I had no choice but to follow my classmates into the tunnel.  I’ve been through a lot of things in my life, but I don’t think I have ever been as scared before or since that trip through the mines.  The tunnels were so tight that in places we had to crawl and could not stand upright.  I cried silently and prayed over and over to myself, promising God anything, anything, to make it end.  Somehow it finally did.  I don’t remember much after that.  Mostly I remember the crushing fear and anxiety of being forced to face my claustrophobia in the worst way.

I think that a lot of people don’t understand what it really means to face crippling anxiety.  Someone asked me recently what it feels like for my young Autistic son.  I see them perplexed by his anxiety to things that seem harmless to them.  I couldn’t think of a good answer at the time; I’m not even sure what I said.  But on my way home I remembered the mines.  I think it must be like that.  My son is the bravest person I know.  He has to enter those tunnels every single day.  He is not able to tell me yet exactly what it feels like for him, but I think of it like this now, because I know what it is like to be afraid of something other people don’t understand.

*image by TJBlackwell see more of his beautiful photographs here

**I’ve chosen not to name the country where I grew up to protect my privacy.

I want him.

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After a tough outing the other day, I was thinking, as we drove home, how much I wish there was a magic pill to cure my son’s anxiety.  I was nearly salivating at the thought.  I would cure his anxiety in a heartbeat.  But I have always been in the camp of parents who don’t want a “cure” for his Autism.  And before you accuse me of saying so because I must have a “mild” kiddo I’ll disclose that R is very impacted by his Autism.  He carries a level 3 diagnosis.  He is not “mild” on the spectrum.  He is less abled than the large majority of his same age Autistic peers.

But here’s the thing:  Autism isn’t just the sum of his challenges.  Are there things I wish I could change for him?  Things I would “cure” for him?  Absolutely.  Would I be willing to re-write his entire neurology, personality and all, to achieve that end?  No f’ing way!  Autism is so much more than just the sum of his challenges.  I see Autism when he smiles and giggles, reaching out to touch something my eyes have missed.   I see it when he moves his body in joyful, wondrous rhythms.  It’s in the fact that he has, in his 3 short years, never tried to deceive anyone, never once acted with malicious intent, no matter how angry or frustrated he might be.  It’s how he is the happiest, most cheerful child I’ve ever met despite the hardships he faces.  I look at his beautiful smile, his whole body bursting with joie de vivre, and I think: this is Autism.  This is as much Autism as any of his challenges.  This is who he is.  I don’t want a different child.  I want him.