Love

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All three kiddos

Sometimes I try to look inward and analyze my feelings for R.  My love for him is so intense it is almost painful at times- the kind of pain that is an echo of the fear of losing him, knowing it would rend me completely. This intensity of feeling is ever present when I think about R, but it’s not that way when I think of my other two children.  This has bothered me every time I get to that point in the inward analysis.  I try to dissect it, to understand it.  I think about my feelings for each of my children very carefully, and, I hope, objectively.  I always come to the conclusion that I love them each the same amount, I just love them each differently. but never less.  So why the difference in that sense of intensity when I think of R compared to my other two children?

When I sit down and really think of that overwhelming, intense feeling my love has for R, I realize I have felt it about my other children, during discrete periods of high stress when they were in some type of danger or distress.  I felt it for weeks when Mohammad was a newborn.  He had pyloric stenosis and was so sick, literally starving and shrinking before my eyes for his first weeks of life.  He was initially misdiagnosed and by the time they finally hospitalized him and figured out what was wrong he was so sick and dehydrated that they delayed surgery for 3 days to stabilize him because he wouldn’t have survived the stress of surgery otherwise.

For those tumultuous first two months of my older son’s life, my feelings of love had that same painful, overwhelming intensity that I associate with R.  In fact, when my second child, my daughter, was born 18 months after her older brother, I had a hard time bonding with her.  When I got pregnant with R a few years later I opened up to my midwife about the trouble I had bonding with my daughter when she was first born.  I remember telling her that I didn’t understand it- everything was so easy with my daughter compared to what happened with her older brother.  She was perfectly healthy, never even lost an ounce of her birth weight.  Everything went perfectly.  So why had it taken 6 weeks for me to bond with her?  Why had I felt so confused and apathetic?  My midwife suggested that that was just it.  My only association with a new baby was one of extremely high stress and intense emotion.  My normal meter for what it was like to have a newborn was very off, and it probably impacted me when I had my daughter.

I think the midwife was right.  And while it took a few weeks, one day, just overnight, something clicked and that solid mama bond formed with my daughter.

I’ve had those intense love feelings with my daughter too- times when she was in the ER after a bad fall or after having been very sick with one thing or another.  The same goes for my oldest son over the years.  But that intense-emotion thing is not my day-to-day feeling for them.   But it is for me with R.  And I am realizing that for years we’ve existed in that high-stakes, high stress, intense, overwhelming please-don’t let-him-be-hurt-please-don’t-take-him-from-us place with R.  He is vulnerable in so many ways that my other children aren’t.  I am constantly, yet often subconsciously, on alert for him.  He’s four and a half and I still wake in the middle of the night in that irrational half-asleep panic where I have to check his breathing to make sure he didn’t somehow stop breathing in his sleep.  This is something I did with all my kids when they were newborn babies.  One of those weird irrational new mom panic things.  But with R it never went away.  And it still hasn’t.

And I think it all just reflects where we are at with R.  That primal “mama bear” protective emotion is always going full throttle.  My feelings are so intense for him, so much I’m bursting at times and it hurts.  But I don’t love him more than my other children.  It’s just that place, that parent “mode” we go to to protect our young when we feel that they are threatened.  Only with most kids that mode is temporary, like using the 4 wheel drive to get out of the mud or drive through snow.  It’s not a mode you use all the time for most parents or with most kids.  But with R we are always there.

That’s how I see it anyway.  I wonder if it will lessen as he gets older and I don’t know.  I do know that I don’t see it as a bad thing.  It’s intense, but it also makes the good moments of each day (of which there are many!) shine so much brighter.  I hope as my other children grow up they see it for what it is and know without doubts that we love them just as much as their brother.  I think they do understand it right now, and I often see the same fierce, protective love in their own interactions with their brother.  Isn’t it funny how small children can understand effortlessly things that become a lot harder to understand when you’re older?  I hope this is an understanding they are able to hold on to.  I love them so much.  I am so proud of them.  Every single day.  Even when I’m grumpy and snappy.  Maybe especially then.  I don’t know if I would have been as gracious and sweet and thoughtful if I were in their shoes.  They amaze me, and maybe one day they will read this, in fact I hope they do.  I love you guys!

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Words

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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. 😉

I Don’t Know.

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R throws his head back miserably and half-shouts, half-cries “Eeeeeeee!”  He throws his whole body backwards, landing hard, kicks his legs violently, angry-cries “eeeeeee,” “mmmmm”.  He flails his body over and over.  I try to hold him and he desperately presses his chin into my shoulder as hard as he can, jaw clenched, while he fusses miserably.  After a moment he kicks and screams and flails until I have to set him down again.  This goes on for nearly two hours, then off and on the rest of the day, interspersed with periods of crying.  Lately, about half of the days each week are bad days like this.

I don’t know what’s wrong.  I don’t know if his pain is physical or mental. I don’t know if this will be temporary or indefinite.  I don’t know if tomorrow will be better.  I don’t know if I should bring him to more doctors to get more opinions.  I don’t know if I should give him space or try to hold him despite his protestations.  I don’t know I don’t know I don’t know.

It has been about 2 months that R has been having these episodes.  At first we attributed it to an ear infection, but when that was treated the bad days continued.  Then we thought it was due to constipation.  But we addressed that and still the meltdowns and bad days continue.  We have analyzed his sleep, his medications, his diet, his stools, checked his ears and throat countless times.  He has dental work coming up. Maybe it’s dental pain.  Maybe he will feel better after.  But maybe not.  I don’t know.

I don’t know and I hate it.

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.  

Relationship Stages with the in-home Therapist

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R’s therapist, helping out on a trip to the zoo.  Only her arms shown here, to protect her privacy.

 

Stage One: She’s Cool

You’ve stopped cleaning before she comes.

You no longer feel compelled to prove how involved you are, and take the much needed period of respite while she’s there to do dishes, fold some laundry, or take a shower.

She doesn’t have to ask you where anything is or if it’s okay for her to do XYZ.  

Your husband has learned her name and recognizes her on sight.  This may seem like an odd one, but when you have a revolving door of therapists, many of whom will leave after just weeks or months to pursue other career goals, it happens.  


Stage Two: The Honeymoon

You can handle her coming over when your house is an epic disaster that you wouldn’t even let your other mom friends see, though you still apologize for the mess.  

You are fine with her seeing you in your grungy sweats and that comfy tee with the stains on it (no bra) while your hair is greasy because you haven’t showered in 3 days.

You can yell at your kids in front of her without feeling like a bad mom.  

Most of your neighbors know her by name.

You don’t mind it when she gives you unsolicited suggestions/parenting advice, even when you don’t agree.


Stage Three: She’s Family.

She has seen you in just a towel. (There is a reasonable explanation story for this).  

Your kids include her in the picture when making drawings of the family.   

She has met more of your neighbors than you have.

You let yourself have occasional mommy tantrums in front of her.

You sometimes feel annoyed by her in the same way your husband or kids sometimes annoy you.

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.