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. 😉

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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!  

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. ❤

Down The Hallway

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The first hallway R is working on walking down at his school

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.