R throws his head back miserably and half-shouts, half-cries “Eeeeeeee!” He throws his whole body backwards, landing hard, kicks his legs violently, angry-cries “eeeeeee,” “mmmmm”. He flails his body over and over. I try to hold him and he desperately presses his chin into my shoulder as hard as he can, jaw clenched, while he fusses miserably. After a moment he kicks and screams and flails until I have to set him down again. This goes on for nearly two hours, then off and on the rest of the day, interspersed with periods of crying. Lately, about half of the days each week are bad days like this.
I don’t know what’s wrong. I don’t know if his pain is physical or mental. I don’t know if this will be temporary or indefinite. I don’t know if tomorrow will be better. I don’t know if I should bring him to more doctors to get more opinions. I don’t know if I should give him space or try to hold him despite his protestations. I don’t know I don’t know I don’t know.
It has been about 2 months that R has been having these episodes. At first we attributed it to an ear infection, but when that was treated the bad days continued. Then we thought it was due to constipation. But we addressed that and still the meltdowns and bad days continue. We have analyzed his sleep, his medications, his diet, his stools, checked his ears and throat countless times. He has dental work coming up. Maybe it’s dental pain. Maybe he will feel better after. But maybe not. I don’t know.
This morning my 6 year old daughter had her winter holiday concert at school. My daughter, A, attends the same lower elementary school that R goes to. The school goes from preschool through first grade, and A is in first grade, while R is a preschooler. As I watched my daughter sing along with all the first graders before the rows of proud parents, a wave of sadness swept over me. I don’t often feel sad about R. But sometimes a sadness hits me, taking me unprepared, like this time. The mother beside me had brought her toddler, perhaps 18 months old. He was dancing to the music, pointing at the children, and trying to sing along. It was unexpectedly painful seeing the one year old like that, doing things R can’t yet do, seeing my daughter having fun on stage and wondering if R will be able to do that in two years, when he’s her age. I don’t normally allow myself to get caught up in the comparison trap. In the beginning it hurt all the time seeing other children R’s age or younger doing so many things that were worlds away for him. But over time I learned to focus on R exactly where he’s at, versus where other children are at, and to anchor myself in the present. Yet sometimes it sneaks up on me. Rationally I don’t think I need to be sad. R is generally a very happy little boy. If he doesn’t feel he’s missing out on things why should I? But there is something inside that is sometimes quietly sad, just for a moment. Always though, the sheer joy of R pulls me free of that sadness in a mighty, inescapable way. This time was no different. Just as that sadness had settled over me uninvited, as I felt the hot pressure of unwelcome tears held back, I heard his little voice. In a crowded auditorium with over a hundred singing first graders and accompanying music on the loudspeaker I heard R’s voice raised in joyful stimmy chants. A voice I would recognize anywhere. At first I thought I must have imagined it, but then it came again and I turned my head to the sound, scanning rapidly for him. I spotted him then, at the railing on the ledge overlooking the auditorium, held snugly in the arms of his morning aide. His aide caught my eye and smiled and made her way with R closer to me. I went to stand with them, said hello to R and gave him a kiss. He was grinning and happily making his sweet noises. His aide told me she wanted to show him his sister singing at the concert. They stayed a few minutes, then, as R was growing restless, she took him back to his classroom. Seeing that bright, happy little face, hearing R’s voice, it made my day and vanished the sadness utterly. I found myself suddenly profoundly grateful. R’s school feels like a family. The fact that his aide thought to take him to watch his sister sing for a few minutes speaks to that. They also take R on little trips to the main office and the nurse’s office just to visit with the staff there. Another time they pulled A out of class to come outside and push R on the swing for a few minutes. It’s so many little things, but what it adds up to is feeling like family. And today that family gave me the reminder I needed. There is nothing sad about today. Today is a good day.
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 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.
We recently participated in a research study about how children with intellectual and developmental disabilities and their families experience feeding and mealtime issues. To be eligible for participation in the study, the child must meet the criteria for ID (intellectual disability, formerly known as mental retardation). Along with his ASD diagnosis, R carries a DSM-V diagnosis of GDD (Global Developmental Delay), which is the DSM equivalent of ID for children under the age of 5. We signed up for the research study knowing he would qualify.
At the first meeting with the research team, they had their own clinical psychologist confirm his eligibility by conducting several cognitive tests (the same kinds of tests R has had administered countless times in the past, and through which his original GDD diagnosis was ascertained).
When the psychologist and her assistant finished, there was much whispering about the final scores and furtive glances my way. I caught the occasional ominous sounding word and gathered that he had obviously met criteria by a large margin. The psychologist and her assistant clearly did not want me to overhear how “bad” his scores were. After finishing up the paperwork from the testing portion the psychologist gave me an apologetic face as she quickly confirmed “so yes he meets criteria,” then awkwardly excused herself and left our home, as her part was finished. Her entire demeanor was strained, apologetic, and awkward. She practically screamed non-verbally “Please don’t ask me for a copy of his scores! I do not want to see your reaction to them!” The assistant quickly squirreled away the cognitive testing packet and scores and hurriedly moved on to explaining how the study itself would be conducted.
This is not the first time we have seen this type of reaction from professionals in the field. It angers and insults me every time. Do they think we are unaware of our son’s delays? Given his slew of diagnoses, doesn’t it occur to them that we’ve been looking at scores and reports for 2 years now and there is nothing new about it? Yes, we know our son tests below the first percentile in every single developmental category. Yes, we know his cognitive skills are estimated at about a 9 month old level. Yes we know that he has no measurable (key word measurable) receptive language, no consistent words, and few functional communication skills. Yes we know that he still cannot use a utensil, or roll a ball, let alone throw, kick, or catch one. We know all of this. Much of it is burned into my brain, an utterly useless list of taunting “can’t”s, a litany ground into us every 6 months or so when yet another evaluation is proposed for one thing or another.
It is insulting that these people think to spare us. Not only because of the implied ignorance on our part, but because it also implies that there is something very sad about our child, that surely we couldn’t handle these facts emotionally as his parents. Sometimes it is sad. Sometimes it does hurt. But our son is just another kind of human. As I tell my children, there are so many ways to be a human. This is his way. It does not make him less. It does not make him a tragedy. It does not make his future any less bright. Like all children, and I will say again ALL CHILDREN, he has limitless potential. Limitless.
I like a psychologist, doctor, teacher, or therapist that can look me straight in the eye and tell me matter-of-factly what the results of the evaluation are. Then move on to what that means for how we are going to tweak our plan of care and educational goals for R. These tests aren’t about defining R. These tests are simply point-in-time macro-scale snapshots of his development. That is it. There is no reason to tip-toe around me when you evaluate my child and behave as if this silly piece of paper in your hand has doomed him for life.
You know what that piece of paper does not show? All the things he will do in a more comfortable environment among familiar people. All the functional things he does, in his own unique unorthodox way, that you would not be able to translate but those who know him closely could. All the things he understands but cannot show his understanding of. All the things he is learning slowly in a particular way, but which he cannot yet generalize to you and your slightly different testing materials. All the things he does spectacularly well that the test-makers never thought to include as a skill– such as unscrewing light bulbs, scaling refrigerators, and carefully blowing extraordinarily long strings of spit bubbles that don’t fall apart. I mean really, imagine if the test read “Can your child unscrew 3 light bulbs?” Instead of “Can your child stack 3 blocks?” And really, the light bulb thing is a major feat, the product of almost 2 years of OT for fine motor. There was a time, just 6 months ago, when our boy could not unscrew a simple child-friendly top on an infant/toddler toy, let alone a light bulb from a fixture!
That piece of paper also does not show the laughter. The smiles. The adorable dimples. The joy; my God the joy! This is a joyful child. This child is going places. We don’t know where, and it is sure to be somewhere unconventional, but we believe in him and we know when he gets there it’s going to be amazing.