You might think hearing your nonverbal four year old use a word to request something he wants or needs would be wonderful, exciting, fantastic, or any other number of positive adjectives. But for me it is almost always heartbreaking and agonizing. This is because R generally only manages to push the word out for what he needs when he has reached a level of utter agony and desperation. You can see on his face in those moments that he has employed every possible tortured, screaming brain cell in the task of forcing out a single word in a last-ditch effort to make us understand. Most of the time this happens with the word “cookie,” which may not seem like a desperate situation, but it is.
Reza has a very important night waking ritual, and that is that when he wakes in the middle of the night he eats chocolate chip cookies and drinks some water, and then he goes back to sleep. He repeats this in the morning when he wakes for the day. He does this every day, and in the absence of this ritual he essentially has what amounts to a panic attack. It is extremely mentally painful for him. We always know what he needs (his cookies), but occasionally we have run out without realizing and it’s 3am and there are no cookies anywhere and he is screaming in pain and terror because the cookies need to be there and they’re not. He tries every way he knows to tell us what he needs. He leads me by the hand to the cabinet over and over. He leads his Dad to the cabinet. He screams and sobs and violently throws anything we try to offer in place of the missing cookies. And sometimes, sometimes, in that moment of extreme distress he manages to push the word “cookie” desperately out of his mouth, spending the last of his strength to do so, hoping this might finally cause us to understand his need and to provide it for him. It tears my heart to pieces because there is nothing I can do and I know his having produced that word at all is a measure of his agony.
Once, something like this happened during the afternoon while his after school therapist and a new BCBA were present. Later that week we had his annual IEP meeting and the new home BCBA came with. While we were discussing R’s communication needs she piped up and recounted how she heard him say “cookie” when he was extremely distressed and desperate. She suggested to the team that we withhold highly preferred items until he gets desperate enough to say the word to request. My mouth was open to object but R’s special education teacher beat me to it. “No,” she said, “we’ve learned from working with R that while he can sometimes say a word, he often later loses the word(s) and genuinely cannot produce the word anymore.” She went on to reiterate the focus on PECS and other nonverbal communication strategies for R. Have I mentioned how much I love this teacher? No kid should be tortured into producing speech, let alone when they often legitimately cannot produce that speech no matter how desperate they are.
But of course there ARE times when R occasionally says a word and it fills me with awe, excitement, and pride. These are times when he echoes a word out of the blue with no apparent intent- usually a word from hid iPad program such as “giraffe” or “strawberry.” He will say the word to himself over and over in a happy, sing-song cadence with a sweet little grin on his face and it fills up my heart. When I sing his word back to him his whole face lights up with pleasure and I feel there is nothing more right than this moment.
The take home message from this post? So-called “functional” speech is clearly not all it’s cracked up to be. 😉
R throws his head back miserably and half-shouts, half-cries “Eeeeeeee!” He throws his whole body backwards, landing hard, kicks his legs violently, angry-cries “eeeeeee,” “mmmmm”. He flails his body over and over. I try to hold him and he desperately presses his chin into my shoulder as hard as he can, jaw clenched, while he fusses miserably. After a moment he kicks and screams and flails until I have to set him down again. This goes on for nearly two hours, then off and on the rest of the day, interspersed with periods of crying. Lately, about half of the days each week are bad days like this.
I don’t know what’s wrong. I don’t know if his pain is physical or mental. I don’t know if this will be temporary or indefinite. I don’t know if tomorrow will be better. I don’t know if I should bring him to more doctors to get more opinions. I don’t know if I should give him space or try to hold him despite his protestations. I don’t know I don’t know I don’t know.
It has been about 2 months that R has been having these episodes. At first we attributed it to an ear infection, but when that was treated the bad days continued. Then we thought it was due to constipation. But we addressed that and still the meltdowns and bad days continue. We have analyzed his sleep, his medications, his diet, his stools, checked his ears and throat countless times. He has dental work coming up. Maybe it’s dental pain. Maybe he will feel better after. But maybe not. I don’t know.
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.
“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.
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.
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.
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.