Stage One: She’s Cool You’ve stopped cleaning before she comes. You no longer feel compelled to prove how involved you are, and take the much needed period of respite while she’s there to do dishes, fold some laundry, or take a shower. She doesn’t have to ask you where anything is or if it’s okay for her to do XYZ. Your husband has learned her name and recognizes her on sight. This may seem like an odd one, but when you have a revolving door of therapists, many of whom will leave after just weeks or months to pursue other career goals, it happens. Stage Two: The Honeymoon You can handle her coming over when your house is an epic disaster that you wouldn’t even let your other mom friends see, though you still apologize for the mess. You are fine with her seeing you in your grungy sweats and that comfy tee with the stains on it (no bra) while your hair is greasy because you haven’t showered in 3 days. You can yell at your kids in front of her without feeling like a bad mom. Most of your neighbors know her by name. You don’t mind it when she gives you unsolicited suggestions/parenting advice, even when you don’t agree. Stage Three: She’s Family. She has seen you in just a towel. (There is a reasonable explanation story for this). Your kids include her in the picture when making drawings of the family. She has met more of your neighbors than you have. You let yourself have occasional mommy tantrums in front of her. You sometimes feel annoyed by her in the same way your husband or kids sometimes annoy you.
It’s time for a happy post since my last one was a little sad and pissed off. There is also tons to be happy about! R is really growing and developing and it is so incredible to see. Remember that little, awkward wave around his hip I saw him do for the first time in my last post? Well he has continued to work on learning it with his school staff and he is rocking it these days! Watch here! It’s beautiful fall here in New England. Last year we went apple picking at a gorgeous farm in CT with family. R was having a hard time with the unfamiliar environment. He cried a lot at first, for an hour or so, but eventually settled down as long as I kept him in the carrier against my body. At the very end he finally felt secure enough to get down and did run around for a few minutes before we left. This year, in contrast, he didn’t cry at all. Not a single tear. And he did not need to be carried or comforted. He fell in love with a 200 lb jumbo pumpkin, which he ran back to at every opportunity. We finally snuck him away from it to the rows of apple trees, where he sprinted up and down and across the rows and threw himself into patches of long grass similar to how a kid jumps into a leaf pile. He was all smiles and had a great time.
We also had R’s annual IEP meeting to review his current IEP and write up an updated one for this year. We knew most of it would stay the same, with minor goal adjustments, but there was one significant change we wanted to make, and that was to request a 5th day of school for R. Our school district’s special education preschool program is a 4-day program, Tuesday-Friday. However, based on R’s high level of need, slow rate of progress, and pattern of regressions we and our consulting clinical neruopsych felt he belonged in a 5 day program. The other issue was that the four day preschool program involved an integrated (half special needs kids, half typically developing) classroom. However, R is not even in that classroom due to his higher needs. Instead, he attends the substantially separate intensive needs classroom, which is for children with intensive needs from preschool – 1st grade, and, due to including older students, operates 5 days a week. So his own classroom would already be open and staffed on that 5th day (Mondays) and we felt there was no reasonable excuse for not giving him the 5th day of services. We sent a written request detailing our reasoning 2 weeks before the IEP meeting. A few days before the meeting my son’s teacher told me, off the record, that when the district asked her and my son’s ABA supervisor about the request they had both strongly advocated for it and stated they believed he needed it. This is not the first time my son’s teacher has advocated for him with the district, and it really warmed my heart. It can be tricky position for teachers to be in, and many prefer not to entangle themselves. The fact that she speaks up for my son means the world. On the day of the meeting we nervously awaited the district’s decision. I thought they would want a round table discussion of it, and that we’d have to defend our reasoning. But instead, the district chairperson just told us that when the team discussed it they were overwhelmingly in favor of it and so we were going to receive the 5th day for him. It was done! No argument, no fighting the district. Our district has been pretty incredible from the start, but I also think we really owe his team for speaking up on our behalf about what’s best for R.
So R is now a 5-day student! We are seeing so many wonderful things as he learns at school. His teacher sends a lot of videos and pictures of R working at school like some of the ones below. R is learning to hold a glue stick, and to smear it with hand over hand help. He is learning to scribble with a chunky crayon or marker with prompting and hand positioning. He can now stack 3 blocks independently, use a shape sorter, place a single inset puzzle piece, wave in response to a prompt (with model), and use about 8-10 different PECS cards. With many of the new things he is learning he gets this adorable goofy grin on his face because he knows he is doing it.
Some of the toy skills have carried over to home and become new preferred activities now that he knows how to do them. He gets a lot of hand over hand help to complete artwork activities at school, but we hang each one up on the wall and he loves them. He stares at them while he eats (they are in the kitchen), and he will go stand on a chair and touch and bang on them with a big grin on his face.
R has also learned how to have a tantrum. He previously had never tantrumed in his life. He had sensory and anxiety based meltdowns, plenty of them, but he had never deliberately thrown a tantrum until just a few weeks ago. On the one hand we were excited to see him take this developmental leap. It means he has realized that his parents can control certain things and that he can affect our behavior with his own, or simply express his anger that we are not giving him what he wants. I think in the past he did not realize we had the power to give or withhold. If a preferred snack was not offered to him, it simply didn’t exist and that was sad but it was no one’s fault. Now he seems to have realized that actually if he doesn’t receive it, it is because mom and dad have not given it to him, even though we could, and it’s our fault and it’s not fair! The development is awesome. Dealing with the resulting tantrums not so much!
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.
R is not feeling well, and has had a rough week. I come to pick him up an hour early from school to take him to the doctor to try and figure out if something is physically wrong. His special ed teacher and afternoon aide bring him out. His sped teacher holds his backpack and jacket, and his aide, Ms. A, carries him. When they reach us he grins at me but stays contentedly snuggled in Ms. A’s arms. He lays a head on her shoulder, and she lowers herself to the floor while we chat. R tucks his legs up in her lap, and she brushes a hand across his head absently. When we are ready to go she hands him into my arms carefully, and we head out.
When R first started school he was very happy and excited to arrive each day, but he was also always utterly exuberant when I arrived to pick him up, practically leaping into my arms. These days, he often is initially reluctant to go home, though he always flashes me a thrilled grin, as if to say: “You’re here! Come in and play with us!” And always, always, I see his body language full of love for Ms. A. It reminds me of exactly how he is with me at home. The way he smiles for her, the way he leans into her, settles in her arms or lap, lays his head on her shoulder. And I see her love too in the way she looks at him, the way she holds him, the way she talks about and to him. I smell her perfume on him after school each afternoon, proof of all time he spends held and hugged by her.
I remarked to my husband that she is his School Mom. He said: “Aren’t you jealous? That he has a school version of you?” And I didn’t have to think twice, the answer is an instant, unequivocal “Nope.” There was a time, with my older children, and even with R when he was younger, when I would have been irrationally, ridiculously jealous at the idea of any other woman having such a close relationship with one of my children. I was the kind of mom that wanted to do it all myself, did not want to share my kids with others, did not want to cede an instant of motherhood, miss a thing, let anyone else watch a “first” without me.
When R was diagnosed I was gradually forced to give up control, delegate and share the work of parenting with others. R needs more than I have to give, he needs lots of extra support and help. The challenges he faces also mean that I have less time and energy for my older children. I began to need regular childcare help with my older two, in addition to all the therapists and specialists coming in and out of the home to work with R. I began to see and appreciate not only the help itself that we received, but also the merit of having more people to love my children and enrich their lives.
When school started I was terrified of not being there. All through the previous 18 months I was there nearly every moment. He was working with various therapists for 5 hours daily, but I was always there, seeing them work, helping when I thought I could help, speaking up when I wasn’t happy with something. When he turned 3 and started school he was suddenly without me, 6 hours every day. I could no longer observe every moment, make sure he was being treated well, and get to witness the “firsts” together with his therapists.
Knowing that he has his School Mom makes me feel like someone is always there looking out for him just the way I would. It is such a relief. There are arms to hold him when he needs comfort. There is a shoulder to rest his head on when he is tired. There is someone there to hug, kiss, and celebrate his accomplishments with all the love and enthusiasm that I would. And when she tells me at pick up the latest thing he did, we celebrate together, School Mom to Home Mom, and I know she gets it. She gets what a big deal it is, and she is so proud of him. Just like I am.
It’s been two months- TWO MONTHS! Since R started school. I’ve written a lot about our efforts to transition R to school prior to his start date due to his severe anxiety- a process we spent 5 months on- and which was wildly successful. You can read about it here, and about his resulting fabulous first week of school here. I was hesitant after that amazing first week to write more about how great school was going, in fear of somehow jinxing it. But the past two months have sped by and there is so much to share. R has learned more skills in the past 2 months at school than he learned in the previous 18 months of full time in-home therapies (ABA, ST, OT, DT). Here are a few of the highlights:
R is understanding and able to use a first-then board
R is continuing to learn to use PECS
R learned how to turn a container over to dump the contents
After initial help with hand placement, R is able to hold a bingo dobber (kind of like a chubby marker) and can independently make about 3 dots with it
R learned to jump with two feet (!!!!!!)
R learned how to clap his hands (!!!), and can *sometimes* respond to the receptive direction “clap hands” (the data says 8%, I’m just excited that he understands the language!)
R tolerated exploring paints, holding the brush, and making some paint marks with hand-over-hand support! A BIG DEAL because he has been terrified of paint/art stuff prior to this
And just this week, R scribbled with a crayon for a moment all by himself for the first time!
I feel like R is truly in the best possible environment at school and that is why he is thriving. He is supported by such an incredible team of dedicated, caring, skilled individuals. I think what truly makes it so successful is that the team all work together. There is so much carry-over. His ST, OT, sped teacher, and aides are always sharing information, ideas, and tips, often observing each other working with R, and so it’s just a really well rounded team approach to each challenge R is working on. We are currently in the process of finding out if R needs PT added on. His teacher and OT have both shared some concerns with the school PT, and I sent a request to evaluate for PT along with some of my own concerns. I love knowing that everyone at school wants what is best for R, not what is cheapest for the budget. The other thing that I really appreciate is seeing how much they all care about R. It is written all over their faces that they adore him. I would have expected kindness and professionalism, but it is clear that beyond that his teacher and aides truly seem to love him, and R seems to love them too. He is almost always very excited to arrive at school, and is often reluctant to leave.
Seeing how much he has flourished in just 2 months, I can’t wait to update at 6 months or a year! Here’s to hoping for many more great things to come. ❤
“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.
I read the numbers on R’s assessment from Early Intervention (EI), and in his diagnosis report. I don’t understand why the cognitive numbers are so low. We had expected the low communication score, the low personal-social score. Are they saying he isn’t smart? I’m angry and defensive, worried and sad.
“It’s because he’s just not interested in those things, not because he couldn’t do them if he really wanted to!” I tell my husband indignantly. Still, I feel anxiously spurred to hurry up and choose therapies for him. The psychologist recommended 35 hours per week of ABA therapy, but we have read things about it that make us feel uncomfortable. It sounds like dog training. It sounds harsh and rigid and unkind. It sounds like they will try to change my boy, instead of supporting him. I want to give him tools he needs to thrive, but I have no desire to make him appear NT.
“ABA doesn’t have to be like that,” Clara*, R’s service coordinator and DT, tells me gently. “It can be fun and play-based, and you can decide what the goals are.” Still, I feel skeptical. Our neighbors have a child with Autism too, and I ask her about their ABA program.
“They are teaching her to clap instead of flapping,” my neighbor tells me eagerly, clearly feeling this is an excellent goal.
“Why can’t she flap?” I ask uncomfortably, not wanting to offend but not comprehending how this, of all things, is worth spending hours of therapy on.
“Well it’s okay sometimes, I suppose,” she hedges, “but it’s not appropriate all the time; she needs to be able to do something more socially acceptable.” I smile politely but inside I reaffirm my anti-ABA stance. If this is ABA, it is not for us. My husband agrees. We choose Floortime instead, which we will have to pay for entirely out of pocket, unlike the ABA which would have been completely covered through EI for up to 35 hours per week. We can only afford 90 minutes per week of Floortime. But coupled with the free DT, ST, OT, and therapy-group provided by EI we feel he is getting enough.
It has been nearly 6 months. R is about to turn two. It has been a pleasure to watch him blossom in engagement and interest in his environment. Though eye-contact was never a goal, he has begun looking at us in those moments of perfect connection between us: when we are tickling him, swinging him through the air, blowing raspberries on his belly. In Floortime we have learned not to try and lead an interaction, but to let him lead. We copy him, we join him in whatever he is doing, which is usually stimming, running, or climbing. In DT and ST we have learned to narrate everything. “Up, up, up!” we say as he climbs the stairs. “Down, down, down!” we say as he climbs back down. Where he previously had no interest in toys whatsoever, he now enjoys examining toys that are identical but feature different primary colors. Sets of blocks, or alphabet magnets, stacking rings, and so on are fascinating to him. We discover that his favorite color is blue. He will always hold the blue toy in one hand, while carefully picking up the other colors in turn, examining them and turning them over in his hand. He carries something blue with him at all times. But R has not made any progress in skills that would increase his daily quality of life, and this becomes increasingly worrying. He has no means of communication at all. It is not the lack of language that bothers us. We have seen that there are many ways to communicate, and speech is not necessary. But R doesn’t communicate in any way at all. He seems to think we can read his mind, and becomes very frustrated when we don’t know what he wants. It breaks my heart because I think he thinks we are arbitrarily denying him, when in reality we just have no idea what he wants. He also still seems not to understand anything we say. He will be thirsty and looking everywhere for his water cup, and I will say, “Here’s your water, R, water, water!” as I wave the cup in the air, but he never once glances up. He continues to search where he expects it to be and begins to cry loudly that he cannot find it. I must walk over to him and wave the cup in his line of vision right in front of his face, and then, only then, does R calm and grab the cup.
Besides communication, R also lacks adaptive and cognitive skills that would make his day more comfortable. He cannot remove his own shoes or clothing, or help with dressing. He cannot use a utensil and hates the feeling of wet or messy foods, which limits him to eating only dry finger foods. He cannot open a lid to get to a stored toy or treat. He struggles to understand that things move around and may not be where he expects them to be. He also deals with a lot of anxiety in new places, and we are at a loss to help him learn coping skills. I wonder guiltily if we should have given ABA a chance. We never even tried it before rejecting it.
One day I arrive with R to EI group but no other children show up from his group. The group leader suggests that we join the group in the next room over, which is the drop off group. She tells me there will be no other parents; the children in that group are there with their ABA therapists. Curious, I agree and we move next door. R is the oldest in his parent-child group, being about to turn two. The drop off group is entirely two year olds, so for once he is among children closer to him in age. I sit with R in front of some brightly colored shape sorter shapes. He examines them carefully one by one, except the blue piece of course, which he holds in his left hand. I look around at the other children and am astonished to see them doing so many things that R can’t yet do. One child is playing with a toy barn, moving animal figures around, making the animal sounds. Another child completes a puzzle, another is placing pegs into a peg board. Some are talking to their therapists, others sit at the art table scribbling with crayons and gluing tissue paper. I decide these children must not be Autistic. They must be here because of some other delay. Then I remember the EI therapist mentioning that these children are with their ABA therapists, not parents. I look and see that every single child is with a 1:1 therapist. I ask one of the EI therapists, who has sat beside R and is trying to engage him, “Are those all ABA therapists?”
“Yes,” she says, and tells me the name of the company they are from, which apparently is one of the largest ABA providers to children in my EI catchment area.
“So all these kids have Autism too?” I ask, still trying to deny that this could be true.
“Yes,” she says. And to my intense mortification, I promptly burst into tears. It is the first time I have cried since or about R’s diagnosis.
When I get ahold of myself the EI therapist is saying comforting things, asking about our therapies, trying to be helpful. I explain why we aren’t doing ABA, how conflicted I have come to feel about whether we are making the right choices or not. All I want is to do right by him, but I feel I am stumbling around in the dark, winging it. She suggests I sit and observe the ABA therapists in the room, and consider that perhaps it isn’t what I thought it was. I do. I sit for those two hours and watch. The ABA therapists do not seem very different from my Floortime therapist. They are cheerful, kind, and playful. Nowhere is the villainous creature my mind had conjured based on stories I had read about abusive, old-school ABA. I go home and have a long talk with my husband. The next day we call the ABA company that the therapists I observed work for. We tell each other it won’t hurt to try, that as soon as we see something we are uncomfortable with we can stop. We decide to take a chance.