Wave

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R. thinking serious thoughts

My son’s face crumples, his mouth forms a huge trembling “O,” a silent, gasping sob.  He is trying so hard not to lose control, not to succumb to the terror and anxiety that is threatening to take over.  I can see him swallowing it, fighting with all he has.  A few audible cries escape, he chokes them back, breathing hard, eyes wild.  He is tearing my heart into pieces.  I hate that he has to feel this way.  I hate that there is no easy way to reassure him, that words I might speak cannot be understood, especially not right now in the grip of his overwhelm and paralytic anxiety.  I say the words anyway, because I don’t know what else to do.  All I can do is be there with him, and do my best to get him out of this place as quickly as possible.  I put on my bitch face.  I give short terse answers to the nurse and make it clear with my attitude that we need to speed things up.

The doctor arrives, a fresh faced med student in tow.  My anguish, worry, and protective feelings for my son seem to morph further and further into anger, which is so much easier to channel, because anger means I can lash out, while the other feelings make me helpless.  I internally remind myself how much I hate med students and their foolish questions and can’t they see this child is being tortured by this fucking place?  Can’t they practice playing doctor with the parent of some other, undistressed child?  Some child that is not mentally and emotionally imploding with anguish that mounts for every additional second we spend here?

“Rough morning?”  The doctor asks kindly.
“No,” I say, “it’s only because we’re here.  He’s a very happy child when we are not around doctors.”  The med student attempts to ask me a few inane questions.
“When did the sleeping trouble begin?”
“This is all in his record,” I say shortly, making it clear I am not here for her to practice on.  The doctor takes over, asking the pertinent questions, the ones we are actually there for, which will ensure that my child continues to receive refills on his medications.  R. is losing his ability to hold back the tidal wave of panic and begins sobbing and hyperventilating in earnest.  The doctor tries to show him a toy, which he politely hands directly to me in between gasps and cries.  I know he is thinking “maybe if I give the object to the other adult I can finally go.”  Therapy has taught him that seemingly meaningless actions might be rewarded with the thing he wants, in this case, to get out of this awful place.  The knowledge that he thinks perhaps some performance will end this torture makes me feel even more upset.  The doctor doesn’t understand and I try to explain “he thinks you want him to give it to me, like in ABA.”  She then wants to discuss his therapies and progress, which really has nothing to do with her role as his sleep specialist.  I give short, irritable answers until she gets the hint and wraps up the appointment.  I get R. out of there as fast as possible.  On the grass outside he drops to the ground and sobs.  I hold him, on the grass beside the busy walkway.  Dozens of people coming and going turn to stare.  I don’t give a fuck.  We sit on the grass and cry together.  Then I carry him to the car, wipe our faces, and tell him, “School!  We can go school now!  See Ms. S., See Ms. C!”  A trembling smile makes it’s way across his face.  R loves school better than anything else in the world these days.  We pull up to school and have our calm faces on.  A fading tear stain across his cheek is the only remaining evidence of R’s ordeal.  A staff person takes R’s hand, begins walking him toward his classroom.  “Bye, R!” I call out.  He doesn’t turn and look, but I see his free hand raise just an inch or so, a quick, awkward movement by his hip.  But I immediately know he is trying to wave, which is something he’s working on at school.  I am blown away.  He’s the strongest, bravest person I know.  I just wish he didn’t have to be.

Autism Tormenters & Autism Whisperers: Contrasting experiences in feeding therapy

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R, with his happy face on. 

Center A

“I’m just so tired of making him cry,” I croaked to my husband on the phone, tears streaming down my face.  I had just gotten home from what was to be our last feeding therapy session at the OT center R attended twice a week.

“If they don’t know how to treat him with respect, if they can’t see how amazing he is, we don’t need them.  They don’t get to treat him like that.   No way.  I don’t want him back there, never.”  My husband tells me intensely, trying and not quite succeeding to keep his voice down at work.

“I don’t know what to do,” I whisper, “we waited 6 months to get in there, and he NEEDS the help, we can’t let him starve.  I don’t know what to do, but I agree with you, I can’t take him back there.  I can’t let her do that to him again.”

“We’ll figure something out,” my husband says soothingly, “it will be okay.”

It was the last week of November.  R had started feeding therapy at this center, we’ll call it Center A, in September.  R eats only 3 foods, none of which are particularly healthy, and has a great deal of anxiety, rigidity, and sensory issues surrounding food.  He is also unable to use utensils.  Sometimes he goes through periods of total food rejection, and fasts for days, or sometimes weeks (relying on breastmilk and pediasure instead).  We were first referred for a feeding evaluation at the hospital in March.  We would not get a spot at Center A, an OT center near us that does feeding, until 6 months later due to the long wait list.  There is only one other out-of-hospital center (which I will refer to as Center B) that offers feeding therapy in our area, and it is twice as far from our home as Center A.

I’ve written before about R’s anxiety.  It is pretty extreme.  He cannot go to new or unfamiliar places without screaming and crying the entire time.  If we want a new place to become an accepted “safe” place for him, we have to practice going multiple times per week for several weeks.  At Center A, it took 5 weeks of going twice weekly before he was able to be there without melting down the entire time.  His feeding therapist, an occupational therapist specializing in feeding, seemed taken aback by his extreme reaction to the center.  The center has lots of toys, a fun gross motor gym with the kind of equipment R, and most kids, love– ball and foam pits, trampoline, enormous exercise balls, platform swings, spinning swings, a sliding board, and more.  I tried again and again to explain to her that she needed to be patient, that if we give R time and space he will adjust and go from screaming the entire time to laughing and engaging with joy.  She did not want to be patient.  She wanted to treat his anxiety like bad behavior, and be firm and insist that he engage in the therapy session.  I felt like working on his transition should be the first goal, not diving right into the feeding goals.  She complained on week three that we were not doing any feeding, and he needs to be there for feeding.  He was making slow progress adjusting to the center, and it frustrated me that she didn’t see how valuable that was, how far we had come.  She continued to try and place demands, and made passive aggressive remarks about the things I would not back down on (“Are you going to breastfeed him until he’s in college?” when I insisted on allowing him to breastfeed to soothe himself).  She also made comments about him personally which I found offensive, such as “I don’t know why kids like him have to get so fixated,” and “It always seems like there’s nothing going on upstairs with these kids, but sometimes they prove you wrong!”  At a brushing seminar she asked us to attend, she told the class that Sensory Processing Disorder (which is part of R’s Autism) is like a moldy pie, and you need to scoop out the mold.  Comparing our children to moldy pies?  That was the best analogy she could come up with?  No thank you.  Still, we kept going.  Our options were so limited, and she did have some valuable ideas for implementing at home, with which we saw some small progress.  In person however, it was a nightmare.  I began to feel that we were just going there to make my poor child cry.  After 5 weeks he had conquered his anxiety to the center.  He walked in happily and went straight for the toys.  He loved the gross motor gym, and would happily swing and run around.  But his therapist was not satisfied.  She wanted him to work on feeding, and wanted it to happen only in the feeding room (a room that still scared him), and she wanted him to engage in the activities she had prepared for him.  Those activities were inappropriate for his cognitive ability level, and coupled with his low receptive language, it was impossible for him to participate.  For example one day she wanted him to build a snowman with mashed potatoes, and use raisins for eyes, baby carrots for arms etc.  He doesn’t know what a snowman is.  He doesn’t understand or engage in symbolic/pretend play.  The entire exercise was completely over his head.  Add to that his anxiety around the new food items and textures– the very anxiety such an activity was intended to mitigate in a more-abled child– and R was completely overwhelmed.  He would just cry and try to leave.  The therapist continued to grow frustrated with R.  It seemed she viewed him as “noncompliant,” refusing to acknowledge the very real and valid fear and anxiety and sensory overload that he was experiencing in her care.  Despite all the time that had passed, she had also still not formed a connection with R, something that usually happens very early on with his therapists.  Each week we took him, on Tuesdays and Fridays, and I watched him go from happy and smiling in the gym, to crying, afraid, and overwhelmed in the feeding room.  Then he would be released for another break in the gym, recover his composure, only to be brought back into the feeding room and have it all torn away again.  Four and five times per session he was taken back to the feeding room and made to cry.  She had begun forcing him to touch the foods, by quickly tapping a food to his mouth, or by using hand-over-hand to have him briefly hold a food item, such as a potato or carrot.  This was always stressful and upsetting for him.  It began to feel so cruel to me.  I struggled with trying to decide if this was for his own good– with his severe ASD and GDD was this the only way it could be done?  In my gut it felt wrong.  I kept telling myself, we’ll give it one more week.  If it doesn’t improve, or if she treats him more harshly we will stop.  Some afternoons I was so sure we would quit that day and not go back.  But then later I would cool down and second guess myself.  Maybe I’m being too emotional as the mom.  Maybe I need to give it more time.  Perhaps we should give it 3 months before making a decision.

On the day that we quit, his feeding therapist asked me not to be in the room.  She said I was a distraction, that he clung to me, and that the reason she wasn’t making a connection with him was because I was always between them.  I have always been present in the first months of therapy with new therapists, and I have never before seen my presence inhibit the forming of a bond between the therapist and my son.  However, that was always at home, not at a center, so I decided to give her a chance.  I knew I could watch through the two-way mirror in the parent observation room.

I then watched through the window as she instructed his ABA therapist, who remained in the room to assist, to hold him in his chair so that he could not get up and move away.  She then brought out cream cheese and food coloring and wanted him to finger paint.  I had already informed her in the past that R does not understand art play- he does not scribble with crayons, he is not interested in paints or playdough.  EI group used to try and make him participate in their art activity.  One day they stuck his hand in the glue and he burst into hysterical tears.  We soon learned that he finds soft/wet/messy textures aversive.  After that he would cry at the sight of paint, glue, and even play dough.  This was all information I had already given the feeding therapist- indeed, a major part of his feeding therapy goals was to work on making wet/puree textures less upsetting for him so he could eventually eat them.  I suppose the therapist thought finger painting with cream cheese was a good way to explore that texture in a fun way so it wasn’t scary.  For another child it may well have been.  I thought by now she understood that for him it certainly wasn’t.  He didn’t understand it, so it was not fun, it was terrifying.  He refused to touch the cream cheese and kept trying to scramble out of his chair, but was held in place by his other therapist.  I watched the feeding therapist grab his hand hard and pull it to her, as he struggled to pull away and cried louder and louder.  She then smeared cream cheese all over his hand while he screamed in pain and terror (remember, an aversive texture feels physically painful to children who process it that way).  He was screaming and sobbing and was unable to get free.  She then forced his hand to his mouth and shoved it at his mouth to make him taste it.  In the observation room I stood watching stunned, horrified, and filled with growing rage.  She then wiped his hand off, and I thought she was done, but instead of letting go of his hand she proceeded to repeat the entire process, while he still sat sobbing helplessly.  At that point I went in there and grabbed him and told her we had to go.  I was so upset I couldn’t even confront her, I just wanted to escape.  Later I would feel like a coward for this.  I cried the whole way home and called my husband.  We agreed he would never go back there.  We agreed that we should have called it off long before it got to this point.  I will always regret that we didn’t quit as soon as it began to feel wrong.  Now I know better.  Now I will do better.  Later our ABA therapist would admit to me that she was glad we quit, that it was making her uncomfortable too.  She is not allowed to comment on clients’ choices in private therapy and she felt awkward, being unable to speak her mind on the matter.  I think it is interesting that we had an OT doing all the things ABA is denigrated for, things our ABA team have never done, and our ABA therapist herself was upset by it.

 

Center B

It has been a month since we quit feeding therapy at Center A.  Wary of trying another center, I avoided looking into Center B.  I spent the month seeking a feeding therapist that would be willing to come to the house and work with us privately in our home.  I contacted several possible therapists, but none were willing or able to work in our home.  Meanwhile R dropped all but one of his foods, potato chips, and went a week eating only chips.  I knew we needed to get help, so I reluctantly called Center B.  On the phone I was in battle mode.  I stated firmly that I was unwilling to set up an evaluation until I had been given an appointment to speak personally by phone or in office with the clinical director.  I informed the secretary that we had a very high needs child and I didn’t want to invest time and energy into a placement until I had confirmation from the director that his needs could be accommodated there.  I was ready to argue, but the secretary calmly said, “Well we always do a one-hour intake by phone with the clinical director before scheduling the assessment.  If you’re willing to let me take down some information then we can go ahead and schedule that.”  Taken aback that this was already part of their routine, I agreed.  The following week the clinical director called me at our scheduled time.  We spent over an hour discussing what went wrong at Center A, what kind of accomodations R needs, the necessity of experienced therapists that can work with a severely impacted child, and the specifics of what I’d like to see for R’s therapy goals.  Throughout the discussion the director explained how they would approach situations, and each time it was exactly how I would have requested that they approach it if I had been asked.  This was really encouraging, and I was cautiously optimistic.  I completed all their paperwork, and his assessment was scheduled for January 19th.

When we arrived at Center B, R was crying hard, which is normal for him when we go somewhere new/unfamiliar.  Me and his ABA therapist took turns trying to soothe him as we waited, showing him videos he likes on the iPad, hugging and squeezing him, verbally empathizing.  After a few minutes the clinical director and the therapist she hoped to pair with R came out to get us.  They first had us bring R to wash his hands at the sink, and then we went into one of their gyms.  R was still crying and anxious.  We and he noticed immediately however, that they had the exact same spinning chair R uses at home and at the sensory gym to calm himself and play in.  This was like divine intervention!  He went straight into the spinning chair, still crying, and the Center B therapists followed him over and began to spin him.

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The spinning egg chair R uses to calm himself.  This picture was taken at the sensory gym, but Center B had the exact same chair, orange color and all.  Ours at home is blue.

They did not speak to him or us, and it was clear by their demeanor that they wanted us to remain silent.  Me and the ABA therapist sat back, a few feet away.  We all sat in silence as they spun him.  They did not try to make eye contact with him, they were very quiet and still.  He began to calm himself.  His tears dissipated, and a few minutes later he took some deep breaths.  He seemed ok, though highly sensitive, teetering on an edge.  One of the therapists began quietly blowing bubbles for him.  The second therapist would pause in spinning him while the bubbles were blown, then after a moment spin him some more, then pause and more bubbles.  At first he ignored them, but as he felt more and more calm he began to watch the bubbles, then finally he reached for one.  After a few more minutes of bubbles the therapist put them away and took out a sensory ball (a ball with bumps/blunt spikes all over it).  She began massaging his foot with the sensory ball.  I don’t know how she knew that he might like this, but this is one of his favorite activities at home.  He loves any kind of foot massage and really enjoys the texture of sensory balls.  At this point I began crying a little because I was just so happy and amazed.  Since his anxiety started this has NEVER happened.  We have never been somewhere new that he was able to calm down at on the first visit.  I was absolutely floored.  I sat there trying desperately not to lose it and all out sob!  This was about 15 minutes into the session.  The therapists, gauging his growing comfort level, spoke for the first time.  They began talking to him softly and gently at first.  One of them quietly read to him from a board book while the other spun him and massaged his feet.  After a few minutes of this he spontaneously decided to jump out and go for the swing, which he had been eyeing quite a bit since achieving a calm state.  He climbed onto the platform swing and laid down on it, waiting to be pushed.  The therapist pushed him on the swing quietly first, and then more playfully, counting down to big pushes, and pausing mid push to pull the swing up close and playfully exclaim “I got you!”  R cracked a huge smile and was officially 100% “himself”- the happy, joyful, playful R that we see every day at home.  The rest of the assessment went great.  I left ecstatic.  This is where he belongs.  These people get it.  They were perfect, they were brilliant.  Later, discussing it with my husband, we both recalled how whenever R is somewhere where he is experiencing his anxiety, he is trying SO HARD to calm himself and hold onto his control.  Once the fear and anxiety reaches a certain point of no return it becomes a meltdown, and is totally out of his control.  We see him struggling to keep that control, to calm himself down.  And it is such an effort that even a single spoken word- not even spoken to him- even just me saying something to another adult in the room- is enough to cause him to loose it.  Have you ever needed absolute focus to do something?  It’s like trying to remember a number and then have someone yelling random numbers in your ear.  It’s impossible.  I think that’s what happens to him when he is trying to calm himself- something as simple as a spoken word or an unpredictable movement in his vicinity (like someone walking into the room) can negate all his efforts.  Somehow the therapists at Center B understood this, even though it wasn’t something I had completely understood myself until after watching them with him.  Like some kind of mythical autism whisperers, they knew just what to do, even better than I could have.  They get it, they respect it, and I think me and my husband can learn as much from them as R can learn through the therapy.  I can’t wait to see where this goes.

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.