Functional Speech

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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. 😉

Today

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.  

Fall Update: lots of good stuff

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.

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touching his artwork

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!  

Wave

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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.

School Mom

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.

School is AWESOME

It’s been two months- TWO MONTHS!  Since R started school.  I’ve written a lot about our efforts to transition R to school prior to his start date due to his severe anxiety- a process we spent 5 months on- and which was wildly successful.  You can read about it here, and about his resulting fabulous first week of school here.  I was hesitant after that amazing first week to write more about how great school was going, in fear of somehow jinxing it.  But the past two months have sped by and there is so much to share.  R has learned more skills in the past 2 months at school than he learned in the previous 18 months of full time in-home therapies (ABA, ST, OT, DT).  Here are a few of the highlights:

R is understanding and able to use a first-then board

R is continuing to learn to use PECS

R learned how to turn a container over to dump the contents

After initial help with hand placement, R is able to hold a bingo dobber (kind of like a chubby marker) and can independently make about 3 dots with it

R learned to jump with two feet (!!!!!!)

R learned how to clap his hands (!!!), and can *sometimes* respond to the receptive direction “clap hands” (the data says 8%, I’m just excited that he understands the language!)

R tolerated exploring paints, holding the brush, and making some paint marks with hand-over-hand support!  A BIG DEAL because he has been terrified of paint/art stuff prior to this

And just this week, R scribbled with a crayon for a moment all by himself for the first time!

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R exploring paints at school

I feel like R is truly in the best possible environment at school and that is why he is thriving.  He is supported by such an incredible team of dedicated, caring, skilled individuals.  I think what truly makes it so successful is that the team all work together.  There is so much carry-over.  His ST, OT, sped teacher, and aides are always sharing information, ideas, and tips, often observing each other working with R, and so it’s just a really well rounded team approach to each challenge R is working on.  We are currently in the process of finding out if R needs PT added on.  His teacher and OT have both shared some concerns with the school PT, and I sent a request to evaluate for PT along with some of my own concerns.  I love knowing that everyone at school wants what is best for R, not what is cheapest for the budget.  The other thing that I really appreciate is seeing how much they all care about R.  It is written all over their faces that they adore him.  I would have expected kindness and professionalism, but it is clear that beyond that his teacher and aides truly seem to love him, and R seems to love them too.  He is almost always very excited to arrive at school, and is often reluctant to leave.

 

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R’s Valentines baggy from school
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Valentine from R’s teacher to him

Seeing how much he has flourished in just 2 months, I can’t wait to update at 6 months or a year!  Here’s to hoping for many more great things to come. ❤

Invisible Disability

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?