I Love You

October 14, 2018January 17, 2019 ~ autventures ~ Leave a comment

rezanewest If you know Reza in person or have followed my blog at all, you’ll know he loves to climb and can scale just about anything. He enjoys climbing in our garage and we usually let him roam in there with the interconnecting door open so we can check on him every few minutes.

Yesterday while he was playing in there we suddenly heard panicked cries. My husband ran in to see what was wrong, but, at first, couldn’t see Reza anywhere. He followed the sound of the cries to the window, where Reza was hanging by his fingertips from the lower ledge on the outside of the garage! Apparently the window had been open, and he pushed the screen out and tried to climb down but got scared and stuck. When we got close enough to help, we realized Reza was crying “I love you, I love you, I love you!”

We reflected afterwards that Reza probably associates those words with being hugged, being held, and feeling safe. We say it to him over and over in that context of physically enveloping him in our arms and our safety and security. So when he was hanging there, terrified and needing to be hugged, held, and safe, he cried out “I love you!” as his plea.

I cried a little. I wonder if he’s internalized the meaning of “I love you” both in that especially literal Autistic way, but also in its abstract sense.

Love this little guy so much.

Today

December 15, 2016December 15, 2016 ~ autventures ~ Leave a comment

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.

Wave

September 8, 2016September 13, 2016 ~ autventures ~ Leave a comment

0831161531b — R. thinking serious thoughts

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

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

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

Sometimes Giraffe Means ‘I Love You’

August 1, 2016 ~ autventures ~ 1 Comment

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.

You can watch here: Giraffe video 🙂

School Mom

May 4, 2016 ~ autventures ~ Leave a comment

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.

To the Man Who Approached Me in the Stop and Shop Parking Lot

April 15, 2016June 26, 2016 ~ autventures ~ 1 Comment

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I felt your eyes on me as I carefully removed my 3-year old son from the cart while his two older siblings loudly crowded into our minivan. My youngest son R cannot help me get his body out of the cart. He sits heavily, a dead weight, while I lift him straight up at the hips, struggle to disentangle his legs, and pull him into a cradle hold in my arms. When he was younger this was easier, but the older and taller he gets, the more difficult this task becomes. At barely 5’0 tall myself, managing to lift his body straight up and out is a challenge for me. Feeling the weight of your stare, I tried to hurry up. I hoped I could get him in his seat and whisk us all away before you decided to approach us.

You see, I knew what you were going to say. We were parked in a disabled parking space, and none of us were using a wheel chair, or showed an obvious visible disability. I have read all the stories. Our disabled parking permit is new, but I know what happens to individuals with invisible disabilities and families like mine when we use these parking placards. Inevitably, and by all accounts frequently, someone either approaches to admonish the individual for using the parking space “illegally,” or they leave a nasty, scathing note on the windshield.

I had just buckled R into his carseat when I heard your voice behind me, “Excuse me?” My heart sank. I hesitated, mentally practicing the script I had decided on the day we received the disabled parking placard in the mail: no, I do not have a disability, but my son does. This is R, and he has severe Autism and multiple disabilities. R cannot safely walk 200 feet without assistance, which is the criteria for this parking permit. R must be carried to and from the car at all times, and that is why we use his disabled parking placard. I turned slowly, ready to deliver my lines, and met your eyes. You were an older man, with crisp white hair and a kind smile.
“Yes?” I asked.
“Let me take your cart for you, I’ll put it back with mine, you look like you have enough on your hands,” you said with a gentle smile as you began pushing my emptied cart with one hand while you pushed your own with the other. Stunned, it took me a moment to compose myself and then I was exclaiming, gushing,
“Thank you! Oh my gosh, thank you so much!!!” Staring after you, astonished and touched. You weren’t there to judge me. You weren’t there to question me, or to tell me off. You were just there to help. You may have forgotten us already, but I can guarantee we won’t be forgetting you. Thank you, you make the world a brighter place. ❤

The Notorious(ly elusive) S-L-E-E-P

April 1, 2016April 1, 2016 ~ autventures ~ 4 Comments

Note: When you have a kid that doesn’t sleep, sleep is something to document. So we have a bunch of sleep pictures of R. This post will contain some of my favorites. Enjoy. 🙂

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It’s 3am. R is giggling and bouncing on his knees on the bed. He pauses, throws his head back, gazes open mouthed upwards to something my eyes don’t discern, then laughs and resumes bouncing on his knees. He has been awake since 11:30pm, after having slept just three and a half hours. He will stay awake the rest of the night, and is still awake at the time of my writing this, 9am the next morning. This despite taking enough prescription sleeping medication to “knock out a typically developing three year old for two days straight,” as R’s rather humorous but blunt sleep specialist put it.

When we first began to see sleep difficulty with R, his Developmental Pediatrician at the autism clinic where he is followed told us that Autistic brains appear to simply not require as much sleep as neurotypical ones. But even given that reduced requirement, around his 2nd birthday, R began sleeping drastically less than is safe or healthy for a young child.

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It started innocently enough. A bedtime that crept gradually later and later, lulling us with a sense of normalcy. Until one day it occurred to me that he was going to bed no earlier than midnight, and that we didn’t know any other children that slept that late and had already dropped their naps as he had! Then came the night waking. He would wake in the middle of the night full of energy as if it were morning. He would play for a while, and eventually fall back asleep. When we first began to have concerns about his sleep, he was getting a total of about 9 broken hours per night. At his age at the time, it was recommended that children sleep at least 12 hours. We shared our concerns with his DP, who gave us the tidbit about Autistic brains, and advised trying Melatonin, an over-the-counter sleep aid that helps with falling asleep, but she was not overly concerned. From where I sit now, I can see why. I would LOVE to see R get 9 hours a night at this point.

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We did begin Melatonin, which helped with the length of time it took him to fall asleep, but it didn’t help him stay asleep. As time passed, his sleep grew progressively worse. He was sleeping from midnight to 2am, then staying awake from 2-6am, then sleeping 6-8am. He was getting a total of 4-5 broken hours of sleep, and still not napping during the day. He was two, and supposed to be getting 11-14 hours of sleep per 24 hour period. After a few months of this his DP agreed that he needed medication for sleep. We were referred to a sleep specialist and R was started on Clonidine, a blood pressure medication used off label to treat ADHD and sleep disorders in children.

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At first, Clonidine was amazing. He was sleeping about 9 hours per night while on it, about double what he would get off of it. We also found that it reduced some of his compulsive sensory seeking. Prior to Clonidine, R had a compulsive need to run constantly. He would run circuits around our block, over and over, throughout the day. One day we decided to calculate his mileage, and discovered that at 2 years old, he was running more than 2 miles every day! After starting Clonidine this reduced dramatically, down to 1/4 mile or less per day. Yet his mood and energy level remained high. He was not tired or slowed down, he just didn’t need to compulsively run anymore.

About a month after starting Clonidine, his sleep began to decline again. The doctor upped his dose. Two months later it began to decline again, and his dose was increased again. This would go on to happen 3 more times over the next year. Now at age 3, his dose is about 8x higher than it was when we started Clonidine (he was started on 1/4 of a tablet, and now takes 1.5 to 2 tablets per night). During his most recent sleep regression, about 2 months ago, the doctor not only increased his Clonidine dosage to what he takes now, but also added a prescription for Trazodone. With his Melatonin, Clonidine, and Trazodone, we were administering 5 pills total each night…to a 3 year old. Have you ever tried getting a 3 year old to take PILLS, not liquid medicine, but actual pills? Now imagine that he has special needs, cannot understand what is said to him, and due to his feeding disorder cannot tolerate any of the things usually used to disguise medication for children (applesauce, chocolate pudding, chocolate milk, juice, etc). It is no easy task..

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Trazodone did not go well for R. We would find that it worked great for about 3 days, and then seemed to accumulate in his system to where by day 4 we were starting to see moodiness and exhaustion during the day, like a hangover. Days 5 and 6 would be absolutely miserable. By day 7 my husband and I would both agree we just couldn’t give it to him that night. So then he wouldn’t sleep well because he wasn’t getting the additional medication, but at least he was happy. For a while we tried cycling the Trazodone- 3 days on, 3 days off. But that had inconsistent results. We finally decided it wasn’t worth whatever extra sleep he was getting and stopped giving it to him. Sleep isn’t perfect right now, he has his all-nighters like last night, but he also has several good nights per week, and for now this is what’s working best for him.

Ahh sleep.. Beautiful, elusive, sleep. One day we will catch you. 🙂

Invisible Disability

March 10, 2016March 10, 2016 ~ autventures ~ Leave a comment

My son’s school’s PTO is sponsoring a workshop to promote acceptance, understanding, and awareness of disabilities. All of the kindergartners and first graders will attend the workshop. The flyer home requested that volunteers are still needed to staff the various learning centers they will be setting up in the auditorium for the two days that they will be running the workshop. I was immediately interested in volunteering, and emailed the organizer, requesting that I be assigned to the station for Autism and/or Developmental Disabilities if possible. It never once crossed my mind that such a station would not exist. But I shortly received an email response thanking me for volunteering, but letting me know that the workshop only has stations for vision, hearing, and physical disabilities. Apparently this program has been in place for years now, and no one has ever thought to represent Autism and other Developmental, Neurological, and Learning disabilities. Until me. Now. I replied, in part, with the following:

“…I find it very disappointing that Autism and other developmental disabilities are not already a part of this program. Autism affects 1 in 68, and with the momentum of IDEA pushing for supports that allow our children to be included in the general education environment to as great an extent as possible, children like mine now rub shoulders with children like yours in every classroom in America. I find it deeply hurtful that at a time when education, understanding, and acceptance is most needed, an established program to promote these very same principles for children with disabilities would choose to exclude such a large population of disabled children whose at times “invisible” disability makes them incredibly vulnerable to bullying and isolation.

Who can I contact to ensure that in future years children like mine will be represented in these workshops? I would be happy to volunteer my time and energy to help facilitate this.”

In reply the organizer recommended that I put forth a proposal to the PTO at their next board meeting and said they would look forward to my involvement in including Autism and related disabilities in future years’ workshops.

While I’m glad that I have a chance to make a change here, I still have a hard time accepting that no one has spoken up before now about this. I would also imagine that the PTO did not consult with the SEPAC (Special Education Parent Advisory Committee) when beginning this program because I can’t imagine that the SEPAC would have let this slide given that more than half the parents on it have Autistic children!

It’s 2016. Our children are no longer secreted away, segregated outside of mainstream society. Our children are everywhere. They are in your classrooms, they are in line behind you at the supermarket, they live a few doors down from you, they flap and squeal at the playground, you see them jumping and spinning at the park. Our children are right here, and more than ever they need the understanding, acceptance, and support of their communities. I will not let the PTO forget my son next year. I plan to make some noise, insist that the SEPAC be included in the planning of this event, and hopefully, facilitate a change. One little lower elementary school at a time, right?

Let There Be PECS

February 8, 2016 ~ autventures ~ 2 Comments

Recently we have been having some pretty exciting success with PECS! PECS stands for Picture Exchange Communication System, and it is a picture-based alternative form of communication.

Therapists have been trying to introduce PECS to R ever since he was first diagnosed at 18 months. They start very simple- introducing just one picture card of a highly preferred item. Back when they first started trying PECS with R, the card was a screenshot of his favorite Baby Einstein video. Therapist A would play the video for a few minutes then pause it. When R fussed for more, therapist B, standing quietly behind him, would take his hand and hand-over-hand have him pull the video card off a velcro strip and hand it to therapist A. Therapist A would announce “video!” and press play. The idea was that he would eventually make the connection that his video was played every time he grabbed the video card, and then he would begin grabbing it spontaneously without help or prompting from therapist B.

When we initially tried PECS, this never happened. A few months later when we tried again and he did progress to grabbing the card himself, but was unable to discriminate between cards, despite the exact-photo images on them. Meaning that as long as there was only one card on the strip he could and would pull it off. But as soon as you added a second card option, for example “apple,” he would grab one or both cards indiscriminately. The idea was to teach him to choose the right one- so if he grabs “apple,” he is given an apple, and if he grabs “video,” his video is played for him. However, despite exhaustive attempts we were not able to get him to discriminate between cards, and he soon began refusing to do anything more than grab and mouth the cards. So we put them away again. PECS were tried once or twice more and with the same result. About 6 months ago I asked his therapists to put them away semi-permanently and focus on ASL signs. While we did see some receptive language success with ASL, R was not able to form signs expressively.

A few weeks ago I noticed that R had learned what “no” means and was showing consistent understanding of the word. That same week he made faces to himself in the mirror for the first time- a cognitive milestone that typically developing children achieve around 6 months of age, but which R had been missing. Previously he did not appear to realize that the face in the mirror was his own. We had seen one or two other cognitive developments recently, and it occurred to me that with these developments maybe it would be a good time to try PECS again.

We started with food items, since that is such a concrete thing, easy to make exact photo images of, and something which he interacts with multiple times per day. Every time I brought him something to eat I showed him the card picture of the item. He only eats the same 3-5 food items, so I kept those 4 or 5 picture cards hanging on a velcro strip next to the kitchen when the cards were not being used. I noticed him looking at them on the wall throughout the week, and looking at them when I presented them with his food. After one week of this, R independently went to the strip on the wall and pulled off the “cookie” card to request a cookie spontaneously for the first time! Over the course of the next week he also spontaneously requested “chicken” and “chips” several times. He was really doing it! Watch R request a cookie here.

In our initial excitement over the communication we did allow R to choose “cookie” about 15x per day. But after a few days it became evident we were going to have to deny him or “cookie” was all he was going to ask for and eat. At first I tried removing the “cookie” card from his strip at times when it was not going to be an option. This didn’t quite sit right with me- you wouldn’t remove words from a child’s spoken vocabulary just because the answer is going to be “no”- but I didn’t know what else to do. This did not help or work however, as R simply searched for the card and then had a tantrum that he couldn’t find it. It broke my heart because he was working so hard to communicate with us and didn’t understand why he was being ignored/denied.

At a loss of what to do, I reached out to an AAC (alternative augmentative communication) group on Facebook that is home to a number of helpful SLPs. They all had the same advice- create a “no” symbol that can be imposed over the card so that R can still see the cookie card, but sees the “no” symbol on top, denoting that it is not a choice right now. I made a clear pocket with the “no” symbol on it, and placed the cookie card in the pocket.

To further help him understand, I also paired it with the “no” and “all done” cards that his school uses in the classroom, and with which his teacher said he is slowly growing familiar. At first he was resistant. He tried to grab the card despite the “no” sign, but I would run his finger over the “no” sign and show him the “no,” “all done” cards and use the ASL sign for “all done” (which he understands) as well.

His next move was to remove the cookie card from the “no” pocket. My husband greatly appreciated this! If the pocket made the cookies off limits, surely just removing it from there would make them available again! We responded by intervening and putting the card back in the “no” pocket and reminding him again that it was “no” and “all done.” At this point I decided to move “cookie” off the wall strip, and onto a separate sentence strip paired with “no” and “all done.”

P1100121 — The sentence strip showing “no cookie, all done.”

Then when it was time that he was allowed to choose “cookie,” I brought him over and had him watch as I removed “no” and “all done” and took “cookie” out of the “no” pocket. I placed the “yes” card down next to the “cookie” card and kept them on the same separate sentence strip.

P1100122 — The sentence strip showing “yes cookie!”

This arrangement seemed to make more sense to him. He began checking the strip to see if it said “yes” or “no/all done,” and his attempts to remove the cookie from the “no” pocket reduced dramatically.

As of this morning we are introducing cards for a few non-food items. For example the strip below is mounted on his spinning chair so he can request to be spun by me or his dad.

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I’m really proud of him and excited that we are slowly getting some communication! Hopefully we will have more PECS progress to share in a few weeks or months as we continue to work on this.

First Week of School

January 29, 2016January 29, 2016 ~ autventures ~ 1 Comment

R, at school on his first day. This and all following pictures were taken by his teacher/aides throughout his first day.

R had his first official week of school this week. I don’t want to say too much. I’m afraid to expound on how well things went, for fear that fate will give him a terrible week next week to make me eat my words. So I won’t be saying too much. I will share a few things.

I’m not sure if I’ve written much about R’s placement. He is full-day in a substantially separate classroom, meaning that he is in a separate special-education classroom, not an integrated (mix of sped and gened) room. His classroom houses children with severe disabilities ages pre-k through 1st grade. There are 7 other students. He has a 1:1 aide with him all day, and receives twice-weekly direct speech and OT. All of the staff that work with him are wonderful. We have really had the opportunity to get to know them all over the last 3 months while they worked with us daily on R’s transition- something I’ve written about here.

The Friday before R’s first week he stayed in his classroom for 2 hours and did not want to leave. We knew he was ready. When his first day arrived, the reality that he would be there for a whole 6 hours without me really started to sink in as I got him ready that morning. I dropped him off, me a bundle of nerves, and he went right into his wagon (his teacher and aide had begun taking him to the classroom in a wagon after we discovered how much he loved that). He was calm and happy and did not spare me a glance as he rode away. I was happy for him, so happy to see him perfectly comfortable at school with his staff. But I still left holding back tears. It’s hard to walk away from your baby for the first time, and R will always be my baby.

When I arrived to pick him up he came out all bubbly and smiley. They said he had a wonderful day and was happy all day. When I got home I had an email from his teacher with pictures from his first day. He looked so sweet and joyful!

The rest of the week continued to go well, with the exception of a cold he developed. Still, despite the cold he continued to have good days at school and came home to us incredibly happy. Both my husband and I could not stop remarking on what a great mood he was in from the time he got home until bedtime. As if his time away had made home all the more interesting and exciting, he has been incredibly joyful and content each afternoon and evening.

Perhaps the best thing has been the happy dance he does every time he spots me when his aide and teacher bring him out to me. He starts off walking the way he always does- unsteady and distracted- stopping to try and lick a wall or a puddle, or rub his fingers over bricks. They get closer and closer to me until I can’t wait and I close the gap and call to him. As soon as he sees me his entire face breaks out in the biggest grin. It stretches ear to ear, his eyes spark with pleasure, and he begins tap-dance-like involuntary body movements of excitement. Some autistic kids flap or jump when excited. My son does something in between. He bounces on his feet, not quite a jump but almost, tapping and dancing his feet around, lifting his arms in joyful little tremors. I scoop him up and we hold each other so tight. He squeezes and presses his cheek to mine, he giggles his delight outloud. He babbles happily. I can’t stop smiling. Leaving him every morning is worth it just for that reception every afternoon.