A few weeks ago I wrote a post that I titled Everything is Not Okay. I wrote about my deep fears and anxieties about what is happening to me, and about death. I wrote about my kids and how this affects them. I wrote about the day-to-day struggles. I wrote about choking and laryngospasm episodes where I feel like I’m suffocating to death. Those moments of thinking “I’m really going to die right here at the dinner table in front of my children,” and the trauma that leaves on my psyche afterward. I got a lot off my chest, which was good, but I couldn’t bring myself to publish the post. It sits in my draft pile and it will maybe get deleted, or maybe just sit there unpublished like a private diary entry.
So no, everything is not ok. Even though when asked I always say “we’re ok,” “we’re fine.” In general I’m objectively not okay. I have a degenerative terminal disease. So no, everything is not okay. BUT. But.. But in this moment, I am okay. Okay enough to be here writing to all of you. Okay enough to share some things, and keep others to myself. Okay enough to smile at the birds outside my window.
My experience with the unpublished post made me realize I need to share more. Not everything- I want to keep my darkest most vulnerable stuff to myself. But I think if I explained some of the things I experience on a regular basis it would both inform others and help me feel less isolated. So stay tuned. I’m going to dedicate the next several posts to these topics.
I’m adding this addendum to my last post because this happened, and then this excellent, perfectly stated response happened. And I realized that in my last post when I said if your child doesn’t like going somewhere don’t go, it may have sounded like I was suggesting “just be house-bound” or “don’t try outings that may be difficult.” It may have come off as cavalier and that was not my intention.
My intention was to say: (1) go places your child likes, as opposed to places you think he/she should like, and (2) if its a place you think they would enjoy if only it could be accessible for them, work on making it accessible rather than forcing them into it in spite of it being set up in an inaccessible way for your particular child (eg sensory overload). And finally, remember, as Tonia points out, sometimes you have to be patient and wait until your child is ready to enjoy certain outings/activities, because our kids have their own timeline, and it diverges from the neurotypical timeline for a lot of things. And that’s okay.
Let me give some examples from my own experience.
Up until a few weeks ago, we had not gone out to eat as a family in about four years. R. simply could not tolerate that environment, and the few times we tried it involved one parent going outside with him while the other ate with my older two kids, then a switch so parent #2 could eat while #1 went outside with R. We found this arrangement rushed and unenjoyable, so we stopped trying to do it. This was not an autism tragedy. We simply adapted. We enjoyed plenty of take-out instead, and from time to time my husband or I would take the older kids out to eat while the other parent stayed home with R. This gave us a chance to have one-on-one (or one-on-two) time with them. My husband and I would also occasionally go out for lunch just the two of us while the kids were all at school. It worked, and it was no big deal. But a few weeks ago, at age 5, we were able to go out to eat, all of us together as a family, for the first time in years. It was exciting and we had fun. And yes, it only worked because we set up strategic accommodations for R, and because we were patient enough to wait until he was ready and able to handle it. In terms of accommodations, we went during non-peak hours because R cannot tolerate large groups of people. We grabbed a large L-shaped booth in the back where we stationed ourselves on either end of the L-shape so that R could not bolt away, but had plenty of room to pace and jump back and forth along the L-shape. We chose a restaurant with very loud music so that R could vocally stim loudly without disturbing others. We brought his iPad so he could watch his videos, and we brought his own food (the restaurant was gracious enough to allow it) because his diet is very limited and we knew he would not eat anything we ordered. I also want to reiterate that even with all these strategies in place, for the last few years it still wouldn’t have worked because he wasn’t ready yet. And I think I should point out that R is hyposensitive to most sensory input, which is why this worked for us. A child who is hypersensitive would need a quieter restaurant, and perhaps headphones to cancel out the background noise.
In the beginning of this post I linked the Washington Post article about a mom who traumatically forced her five-year-old Autistic child into indoor spaces that caused panic attacks for him in an effort to make him overcome his anxiety. Anyone who has followed my blog knows that for a very long time R had that same anxiety and panic in unfamiliar indoor spaces. I have written about it in several posts like this one and this one. Our approach for places he *had* to go to (not like Ellenby, who forced her son into a Sesame Street concert) was to work on it for months in the tiniest possible increments. And when it came to non-essential places, like recreational spaces, we waited, and in the meantime, spent lots of time outdoors since he was fine in outdoor spaces. This was limiting at times. We could not visit family, they had to visit us. If we wanted to take our older two somewhere, one parent (usually me) had to stay back with R. But it wasn’t the end of the world and it wasn’t all about our sacrifices as parents. We tended to think of it terms of poor R, who had to struggle with this huge anxiety despite being such a tiny little boy. I have anxiety myself and have experienced panic attacks. They are so terrifying. And knowing that my toddler was having panic attacks broke my heart into a million pieces. So no, staying away from places that caused a panic attack was not some huge sacrifice for us, it was really the least we could fucking do for our sweet little boy. So we waited, and as he grew and acclimated to more indoor spaces (school, doctor’s office, etc) we slowly introduced new spaces with careful accommodations in place. For example the Boston Children’s Museum does accessible mornings and evenings where they will open the museum during off-hours. It is open only to children with disabilities and their families, they limit it to a small count of people (R cannot handle crowds so this is crucial for him), and they make sensory accommodations like low lighting and sound. The first time we tried it he could only handle it for about 15 minutes, then he needed to leave so we left. The next time he was able to stay for a whole hour. We followed his lead and took it slow. Now, at 5, he is in a place where he can go most places as long as it is not crowded and for discrete amounts of time (he makes it very clear when he is done and needs to go). He also generally needs to be able to stim freely to help himself cope, so that also factors in when we choose where we are going.
The bottom line is be flexible and be patient. And if, as time goes by, you see that the severe anxiety is not abating despite all efforts and despite the child’s growth and development, eventually the option of medication should be considered. I know several parents of Autistic children for whom pharmacological treatment of severe anxiety was life-changing. I’m sure you can imagine what it’s like to finally see your happy, smiling child again. We need to end the stigma surrounding medications for mental health. It shouldn’t be the very first thing we jump to, but when other approaches fail, an individual should not be left suffering when there are pharmacological options that could greatly improve their quality of life.
Alrighty, I’m off my soap box. Thanks for listening. 🙂
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. 😉
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 has started echoing a few words that he hears on his iPad, or which he hears us say. He is not able to retrieve these words on command, use them to label, or use them in a literal functional way, but they serve their own very unique function for him. This new development is really special and exciting to witness. This way of learning and using spoken language is called echolalia. Reza sometimes echoes a word right after he hears it, which is called immediate echolalia. Other times, he echoes the word much later and seemingly out of context. That is called delayed echolalia.
Most of the words he is echoing are from an iPad app that displays pictures of animals and intones their names. A few weeks ago we first noticed him immediately echoing “elephant,” and “giraffe,” right after his iPad would say it. Soon he began reciting “elephant, giraffe” at random times throughout the day. We began to notice that he would use this recitation to calm himself down when slightly anxious. On a trip to the beach he was at once excited and frightened by the waves crashing into the sand at his feet. He would run and dip a toe in, then chant “elephant, giraffe!” as he scurried back to safety.
While “elephant,” has mostly fizzled out, he continues to enjoy saying “giraffe,” and using it to mean different things in his own way. Sometimes giraffe means “I’m scared!” Sometimes it means “I’m feeling silly!” Sometimes it means “I can’t process all this input right now, I need to focus inward so I feel okay.” And sometimes, sometimes, giraffe means “I love you.” And that is my favorite giraffe of all.
“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.
Sometimes I worry that I do (or will) write too many posts about negative things. It can be very therapeutic to process difficult situations and emotions by writing them out, so I often get the urge to write during times of stress. When good stuff is going on, I feel a lot less urgency to write about it. I’m busy enjoying it, and am more apt to share it verbally with others, or on Facebook. Whereas when I am dealing with the negative side of things, I am often uncomfortable discussing it with family and friends. I hope for this blog to be more balanced, and include the good stuff along with the hard stuff.
So here’s some good stuff.
Holidays. My little guy did amazing over the holidays. We had family visiting for two nights. In total there were 7 people staying with us from out of town. In years past we always spent Christmas with my parents, and my brothers would come out too. Because R’s anxiety is such that it is not feasible for us to stay overnight at my parents’, everyone decided to come to us this year. I was a little nervous about how R would do with so many people in his space. He was a rock star. When he needed a break he retreated to either his spinning chair, or doing his circuit across our kitchen counters. Several times he allowed his grandparents and uncles to play with him by him tickling him and picking him up to spin him around or toss him. It was really nice to see him able to not only tolerate everyone being there, but also have fun with them at times when he was feeling safe and receptive. This was pretty significant progress compared to previous visits.
Generally, even when he does well with visitors, after they leave he lets out any bottled up stress that he’d been holding in. We usually see a day or two of crying a lot and frequent meltdowns before he is back to himself. We were expecting this to be the case after our holiday guests left. I don’t think it has ever not happened. But incredibly, this time it didn’t happen. He was just happy! We could see he was relieved to have his house back to himself, but there was no release of stress. No crying bouts or meltdowns. I thought, okay, well maybe it will come tomorrow. Maybe he’s still holding it in. But the next day (yesterday) was the same. One very happy little R! This is pretty huge for him! It means that his stress levels and anxiety stayed at manageable levels despite having visitors. I think he was probably self-regulating really well with his retreats to his spinning chair and his comforting back and forth circuit on our counters. He is developing coping skills and that is going to be invaluable for him going forward. I am actually seriously considering buying a second spinning chair for him to use at school. Hmm…
The ball pit. R has been going to a local special needs sensory gym since he was first diagnosed a year and a half ago. I mentioned it in my previous post. They have various equipment- 3 different types of occupational therapy swings, exercise balls, tents and tunnels, balance boards, sit-and-spin type toys, ride-on-toys, a sliding board, a quiet room with a bubble lamp and fidget toys, and a play room with developmental toys. They also have a ball pit. When we first starting going there R only used a few of the items. But by 6 months in, he was using everything except the ball pit. He was fascinated by all the brightly colored balls, but became frightened if I placed him in the pit, and would scramble out as quickly as he could. A year later, and he was still too intimidated by the ball pit. Until last week. Completely out of the blue, he went for it, and he loved it. You can watch the magic here. This dude is awesome. He does things on his own timeline. When he’s ready, it happens.
Problem solving. R scores severely delayed in cognitive skills. He scores in the low 50s (the mean being 100, like on an IQ test). I have read that our kids often score well below their true cognitive level, particularly when, like R, they have low receptive language and are nonverbal. However, I have noticed that R struggles to problem solve in very simple scenarios. While it is far too soon to know if he is intellectually disabled, I think that his cognitive delays are real, and not just a matter of Autism masking his true abilities. Last week my husband and I were discussing the fact that R had not yet figured out how to push a chair or box over to a place he wants to climb. He loves to climb our kitchen counters, but requires a chair to boost himself up. We leave one for him when we are letting him climb, and slide it away when we don’t want him up there. Even if it is only 10 inches away from the counter, he would just cry, and never try to push it those few inches to the counter to be able to use it. This kind of problem solving is present in one-year-olds, but just weeks from his 3rd birthday, R was not yet able to work it out for himself. As if he had heard us discussing it last week and had been contemplating it ever since, this morning, first thing when he woke up, he confidently pushed a bar stool several feet until it was against the kitchen counter and proceeded to climb up like it was no big deal. You go, kiddo. You got this.
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.