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.

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.

Big Change

It’s Sunday.  It’s officially the first day of our last week in Early Intervention.  One week from today my son turns 3.  At 3, the school district takes over his services, and Early Intervention (birth to 3) is finished.  I’ve written about our work transitioning to the school district.  We have had his IEP ready to go since November.  None of this has snuck up on us.  But somehow, it feels so very sudden.

It’s hard to believe that next week I won’t have people in my home for 5 hours a day anymore.  We won’t have the revolving door of no less than 8 therapists coming and going weekly.  The day-to-day realities of the last year-and-a-half are ending.  We are embarking on something new.  18 months ago I had to trust a group of strangers.  I had to trust them enough to let them in my home for most of the day, 5-days a week.  I had to learn to let some things go, to delegate, to allow for a different trajectory than I had envisioned.  Now I need to trust again.  Now I will trust another group of strangers.  This time, I won’t be there to oversee every moment.

I’m excited and terrified.  I’m hopeful and apprehensive.  I’ve met R’s teacher, his new therapists at the school.  They seem wonderful. The logical part of my brain is overjoyed and eager, feeling certain that my little boy will be in good hands.  The emotional part of my brain can’t stop asking “But what if…?”

 

Is any mother ever ready for this?

Here we go.

To the Mom of the Typically Developing Child at the Special Needs Gym

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R, enjoying a fidget toy in the spinning egg chair at the special needs sensory gym

I realize that I don’t know your story.  I realize that your child may have a speech delay, or been followed by EI after a premature birth, or beaten a devastating disease.  I don’t presume that she has had a completely typical life.  But I can see, at this point in time, that she is a typically developing toddler.  I have seen you and her almost every single time I take my son to the special needs sensory gym.  She is over a year younger than my son, and is a sweet, curious, and playful little girl.  I see that.  I see that she is adorable.  I do.  I know you wonder why I avoid you and her, why I cringe when she barrells over to us.  I know you are perplexed when I don’t seem appreciative that you have prompted her to greet my son, when you have praised her for offering him a toy or “helping” him with something.  I know you thought it was strange and perhaps a bit rude that I was not eager to bring my son into the rocking boat with her when she requested and you asked us.

Here’s the thing.  I don’t mean to sound unkind, but the truth is, we come to this place to avoid children like your daughter.  There’s nothing wrong with typically developing kids.  It isn’t that I don’t like them, that I don’t like your daughter.  I have two NT kiddos at home myself.  But the special needs gym is a haven for my Autistic son–and I’ll admit–for me.  It’s the one place where we can completely be ourselves.  It’s the one place where my son is not the odd one out.  It is the place where no one bats an eye when a child is happily stimming away, or has a meltdown.  It’s the place where I don’t have to explain anything to anyone.  And it’s the place where I don’t have to see the harsh comparison between him and his typically developing peers.

It’s also one of the few places he can enjoy due to his anxiety in public spaces.  We cannot go to the library.  We cannot go to the mall play spaces.  We cannot join a mommy and me group or take a gymnastics class or visit the Y.  But we can go to the special needs gym, and it is my son’s favorite place in the entire world.  It is also a place where he is generally free from the attentions of other children, which he finds agitating.

So when your daughter runs over to us, staring me in the eye, chattering away, and shoves a toy in my son’s hands, it is all wrong here, in this safe place.  He freezes, waits for her to leave him be.  I cringe, hearing all the words my son can’t say from the mouth of a child half his age.  I see her share attention and play pretend and it just reminds me how different my son is.  It pops my happy bubble, and I feel the worry creep in.  I don’t need my boy to speak or look me in the eye, I don’t need him to play “appropriately.”.  Yet absurdly, it still hurts to see other children doing those things so easily, so naturally, like it’s absolutely nothing.

When your daughter asked my son to join her in the rocking boat, and you repeated the question when he didn’t look or respond, I had to explain.  I had to tell you that he doesn’t speak or understand yet.  But I don’t come here to explain.  I come here because it’s supposed to be the place where explanations are not necessary.

I saw the confirmation on your face.  You had been pretty sure he was different, but now you really knew.  I watched you prompt your daughter to always say “hi” and “bye” to my son after that.  I watched you praise her when she brought him things he didn’t want.  I watched you caution her to give him space when it was clear she overwhelmed him.  Perhaps you were just doing what you would have done with any child.  But a part of me felt we were being used as props to teach your perfect child how to interact with “those” kids.  I resented it.  We don’t need the charity of your child’s attention.

After that I started to avoid you.  I know you noticed, but I’m not strong enough yet.  There are other special needs moms that can interact with moms of typical kids and it doesn’t affect them.  They can graciously manage the curious glances and fishing comments of parents, and the in-your-face antics of typically developing children.  They can smile at those children and mean it.  They can laugh with you and share stories like it’s no big deal.  They can drive home after without crying.  They are strong.  I’m not there yet.  One day I will be, then maybe we can have a cup of tea and you will show me what I missed out on while I was trying to cope.

Vanishing

Once, when R was 9 months old, he picked up a crayon and drew a long, bold line across the paper sitting out on our kitchen table.  It has been more than 2 years since that day, and he has never used a crayon again.

Around 14 or 15 months of age we also thought he was saying one or two words.  But it faded, and by the time he was diagnosed at 18 months, we were no longer sure the words had been there at all.  To this day, I honestly don’t know.

At 22 months he began using two signs.  “More,” and “milk.”  A few months later he lost them.

He once hand-led me to something he needed, which was huge for him in the communication department.  I was incredibly excited.  But it never happened again.  Another time he pushed a packet into my hand, a clear request for me to open it.  This too never happened again.

We worked for months on learning how to dump something out of a container.  It may sound like an odd goal- but he would only try to reach into containers, and there are many types of containers that are too narrow to fit your hand in, so you dump or pour instead.  This is a standard developmental skill that babies develop between 6-12 months of age.  We worked on it for about 6 months, and then one day he seemed to be getting it.  It lasted about a week and then we never saw it again.

When he turned two he began imitating some of the nursery rhymes he loves to watch on his videos.  We heard “ee-i-ee-i-o” from Old MacDonald, and we heard snippets of the ABC song.  He was completely nonverbal, so these were almost like first words for him.  But a few weeks later they disappeared.

This has happened with so many things.

I don’t know why he can do something once, or a handful of times, or even for weeks or months, but then lose it.  Our therapists have offered a few suggestions.  It could be a motor planning difficulty, one therapist suggested.  He may know what he wants to do in his brain, but not be able to make his body cooperate.  Another therapist opined that he had not put down the developmental foundations necessary for these skills, therefore he cannot consistently recall them.  In other words, if you try to run before you can walk you will fall down a lot.

Whatever the cause, it can be hard to watch.  Now, when he does something new, I am afraid to get too excited.  Sometimes it seems that whenever I share a success with a friend or family member he loses it shortly thereafter.  I feel like I will jinx it, so I keep it to myself, like an early pregnancy, waiting for that moment when enough time has passed that it feels safe to share.  That it feels like he will keep it.