Sleeping Beside my Angel

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Reza in bed with a sleeping Daddy.  Unfortunately, since I’m always the one with the camera, there are no pictures of me and him snuggling in bed!

Reza has slept every single night of his nearly 6 years beside at least one, but most usually both, of his parents.  He doesn’t always do much sleeping–I’ve written plenty about that–but when he does sleep, it’s cuddled in our bed.  (In my head I’m hearing Goldsmith crooning I don’t always sleep, but when I do, I prefer to cosleep…)

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While I think this has had an incredibly positive affect on Reza, it also has been a profound source of comfort and connection for me too over the years.  He always sleeps between my husband and me.  Occasionally he would roll to my husband’s side, so when my husband came to bed he’d sleep next to me with Reza on the far side.  In my sleep I’d reach for my son and he wasn’t there and I would panic!  So now my husband always moves him into the middle if he’s rolled too far.  It’s hard to explain, but I spent more than three years breastfeeding him through the night beside me, and now it’s been almost another three years just cuddling him.  At this point the association of sleeping next to him and a sense of peace and wellbeing is so strong.  I know he will need his own bed eventually, but I want to savor this special time while it lasts.

Gradually though, ALS has been elbowing itself in between us.  It started with little things.  It’s hard for me to grip the blanket and pull it over Reza and myself.  So he began rolling closer to his Dad, since he knew Dad could pull the blanket over him the way he likes.  My sweet husband solved that by tucking us both in under the blanket together.  Then I started using a splint to keep my fingers from curling at night.  This lost me the ability to use my left hand to rub his back or hold him.

More recently, I began needing to use a non-invasive ventilator (called a BiPAP) during the night to help me breathe while I’m lying down.  You wear a mask with it, and mine is a full face mask.  I’m mostly stuck on my back.  With the mask on it’s very hard to side-lay while wearing it.  This makes it hard to snuggle my little guy.  I also used to love laying my nose gently against his head, inhaling his sweet scent as I slept.  But now I have this big piece of silicon covering my nose and mouth.  I miss side lying with my arm across him, my nose buried in his hair.  But I still get to feel his warmth beside me, and now he reaches for me, holds my wrist gently in his little grip.

We did have one cute, funny thing with the ventilator.  One night, I was laying in bed and having trouble falling asleep.  As my husband and son drifted to sleep beside me, I noticed that both of them had synced their breaths with the ventilator breaths!  It creates a very soothing ambient noise, and it seems no one can help but sync their own breathing to it along with me!

Lately we’ve been discussing bed solutions.  Our mattress is on the floor with no frame.  Originally this was necessary because Reza would fall off a regular bed in his sleep and hurt himself.  But now it’s hard for me to get in and out of because it’s so low.  However I am not able to climb up into and down from regular bed frame heights.  I’m tiny myself, and with my weakness I can’t do it.  So one option is to eventually consider a hospital bed that would be able to go up and down as needed, and we could adjust elevation of my upper body or feet etc as needed for best positioning.  But if I go that route I will have to give up sleeping with my sweet angel, and my amazing husband.  And I don’t think I’m ready for that.

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A Realm of Music

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My boy exists at once in overlapping realms.  He is here, but also in another place, a place where I cannot follow.  His realm is a realm of music.  As it overlays my own, I can sometimes glimpse its edges, sometimes make out a silhouette.  I catch something in the corner of my eye; I reach out and feel it like a mist against my hand before it slips away.

This is not about hearing and listening, this is not about sound or song.  This musical realm is so much greater than that.  It is, at its core, a place of vibration.  The vibrations are a music that my boy can feel, taste, touch, hear, and see.  It is a multisensory language in which he is perfectly fluent.  He can create it with his hands, his mouth, his feet.  He can chew it; he can pound it into vibrant existence; he can shout it, howl it, screech it; he can blow it, click it, whisper it.  He can measure it, map it, and sometimes he can use these calculations to approximate the verbal speech of my world.  Sometimes.  When the music moves him to do so.  Sometimes.

You hear him making strange and senseless noises, but I know different.  I hear him singing joyously the song of the microwave’s hum, of the vacuum’s roar, of the truck’s engine, of the chirp of someone’s cellphone, the shriek of the kitchen timer.

I see him chewing gravel and feeling, listening to the crackle and grind in his inner ear.  I see him dumping coffee beans on the floor to orchestrate a wildly raucous staccato, like heavy rain on a tin roof.  I see him slapping tiles and bricks and walls and windows, licking them too, in a symphony of feeling, hearing, tasting, seeing.

My boy is master of his realm.  He is its conductor, its composer, its musician, and often, its instrument.  He firmly rejects what does not belong in his song.  “Come sit,” we say, but his song is a song of movement.  “Eat this,” we say, but it doesn’t taste of his song, it does not crunch in his mouth like the percussion of his orchestra.  “Do this,” we say, but it is often irrelevant to his music at best, a painfully discordant note at worst.

Sometimes our world combines magically with his, playing a delightful harmony to his melody.  He joins joyously, laughingly, exuberantly with us.  He learns what we offer him, and uses it in his song.  His song grows with him and he is growing, growing.  He is blossoming.  We see him and he is rhapsodic, glorious, ebullient.

Never change, I think, never change, I pray.  You are perfect.  You are indomitable.  You are my own sweet swan song.  

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!

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.

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.