Sometimes Giraffe Means ‘I Love You’

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🙂

Dear NT psychologist: Look Me in the Eye

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Photo taken on a beautiful spring day in April.  My boy adores the swing!

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.

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.

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

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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.  <3

The Notorious(ly elusive) S-L-E-E-P

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.🙂

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?