Brown

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Mohammad, 8 years old

We are sitting at the table eating lunch.  Mohammad and Aliyah have a neighbor friend over, a mixed race boy that, by skin color alone, appears to be black.  Mohammad turns to his friend and brightly asks “Guess what color I am!”  The boy looks perplexed and Mohammad clarifies “My skin, guess what color skin I am!”  The boy’s brow furrows, “White?  Brown?” he asks.  “How did you know?!” Mohammad gushes excitedly.  Listening to them, I wonder which guess Mohammad has identified with, since the boy guessed both white and brown.  I say, “Mohammad, which one is it?  White or Brown?”  He says “I’m Brown!” then happily resumes eating his Mac n Cheese.  The conversation moves to legos and plans for constructing a fort in the bedroom.  I continue to contemplate the discussion of color and identity.

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Mohammad (8) and Aliyah (7)

My kids are half white, half-Iranian.  Though my Iranian-American husband has relatively fair skin and eyes, he does not identify as White.  His father has the darker skin and eyes that most people associate with mid-easterners.  His oldest brother does as well.  Our son, Mohammad, is tanner than his father, but has enormous blue eyes.  I wear the hijab (headscarf), which has negated my white skin and ethnicity, throwing me over that invisible and ever-shifting line between White and Not White.

Years ago I had a roommate who also wore the headscarf.  She and I looked nothing alike.  She was tall to my short.  She was brown skinned to my white.  She had dark eyes and I have light eyes.  Our white neighbor did not figure out that we were two different people until months later when he saw us together.  He was shocked.  The headscarf erases my whiteness, my American-ness, and my individuality in the eyes of most White Americans.  I become a nameless Other.

Before we had children I used to always tease my husband for checking off “Other” on the race selection part of forms.  “You’re white-skinned with blue eyes,” I’d tell him in exasperation.  We would debate the matter and always end up in a stalemate.  In part, my argument stemmed from my own resentment that he, the Iranian-American, could “pass” in society, while I, the White/European American could not, because of my headscarf.  It seemed unfair that he could claim “Other,” on his forms while seamlessly passing as White in public, meanwhile I had to put White/Caucasian on my forms while being treated as Brown and Other in public.

When we attend mosque nearly everyone is brown skinned.  Once, when Mohammad was 5, he remarked “Only brown people are Muslim.”  I asked him if I was brown, if he and his sister were brown.  “Well we’re Muslim so we’re Brown,” he said.

 

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Mohammad


I wonder what Mohammad’s friend, as a person of color himself, thought of Mohammad’s assertion that he is brown.  I wonder too, on behalf of my son, if a boy named Mohammad ever can claim the privileges of whiteness.  Like my hijab, his name alone seems to rescind that sociologic group membership.

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Aliyah

Unlike her brother, my daughter does not seem to identify with any particular color or ethnicity.  How much does that have to do with her name?  Her name, Aliyah, more or less passes.  It is not overtly Muslim, foreign, or ethnic, though it is more common among Black and Brown girls.  She looks white.  And she doesn’t wear a headscarf.  Is that why she feels no burden to identify with a particular race or ethnicity?  Has Mohammad’s name isolated him from whiteness from the time he was little, driving him to deliberately claim a separate identity in a way his sister has never needed to?

I don’t have the answers but I am curious to watch my children as they develop identity, to see where they end up.  And maybe now I understand a bit better why my husband can’t bring himself to tick off “White” on forms.

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ALS: my story

I’ve been meaning to write about this for a while.  While this blog has focused on my Autistic child, at its core, it has been a tool for me to process my emotions about my son’s autism and my own parenting journey with him.  But my ALS diagnosis has eclipsed just about everything else in my life, autism journey included.  Lately I have been feeling the urge to write out my story, my feelings, my reflections, my fears.  So I am going to do it here and I guess this blog won’t just be about autism or about my son anymore.  Maybe it is better for it to evolve into something that captures more of me and my family than just the autism facet.  So here goes.

Let me begin by saying I did not have ALS remotely on my radar until January 23rd, 2017.  I was given my first diagnosis of Motor Neuron Disease (which is the family of diseases ALS belongs to) on March 3rd, just five weeks later.  Three weeks after that I received my official ALS diagnosis.  So I went from having no clue about ALS to being diagnosed with it in a matter of weeks.  But the first signs of the disease,  though I didn’t recognize them as such, began over a year prior.  My best estimate as to the start of the first symptoms is 15 months prior to diagnosis, around December 2015.

I should also preface with a brief explanation of what ALS is.  Prior to learning I might have it, the only thing I knew about it was that it was what Stephen Hawking has.  I knew it caused him to be paralyzed and use a high tech eye-gaze AAC to communicate.  Because my own child is non-speaking, I’m very pro-AAC, and so my overall impression of ALS was “they use an awesome type of AAC, how cool is that.”  Stephen Hawking is so old and has had ALS for decades, so it never occurred to me that it was a terminal illness.  Hawking, as it turns out, is the longest lived person with ALS, defying the harrowing statistic that 90% of individuals with ALS die within 3-5 years of diagnosis.

ALS, which stands for Amyotrophic Lateral Sclerosis, is a neuromuscular disease affecting the skeletal muscles.  The brain is no longer able to communicate with the muscles, resulting in progressive weakness leading to total paralysis.  This leaves a person unable to move, speak, or eat by mouth.  Eventually it can affect the breathing muscles, resulting in respiratory failure.

It all started with weird muscle cramps.  I say weird because they occurred in unusual muscles, like my tongue and individual fingers, but were notably absent in muscles you expect to have cramp, like your legs.  When I asked my doctor about it she was completely unconcerned and suggested I was dehydrated.  I remember thinking “Shouldn’t that give me a charlie horse, not a tongue cramp?  Who knew your tongue even could cramp?!”

Around the same time I began experiencing bouts of uncontrollable, inappropriate laughter.  It was very embarrassing and I worried that there was something psychologically wrong with me.  I wondered if I was having stress-induced hysteria, and wondered if it meant this was some kind of breakdown.  I also remember thinking it really reminded me of my grandfather after his stroke- he would cry or laugh inappropriately in the same kind of way it was happening to me.  I later learned that there was nothing “wrong” with me, not mentally anyway, and this was another neurological symptom associated with ALS and other neurological problems or disorders.  It is called Pseudobulbar Affect (PBA) or Emotional Liability.  So it turns out I  was right to see the resemblance between what was happening to me and what I’d witnessed after my grandfather’s stroke.  About 50% of people who have suffered a stroke will experience PBA, and I now see that my grandfather must have been one of them.

In the spring of 2016 I had a bad case of the flu.  After I got better, a nasal, congested sounding voice remained.  But I was no longer congested.  Weeks passed and it still remained.  I did have some other sinus symptoms, like a constant postnasal drip, and a strange inability to close off my sense of smell without manually pinching my nostrils closed.  I thought I had some kind of deep congestion, back behind my nose since I knew my nose was clear.  It lasted so long that I thought it must be a sinus infection.  I went to my PCP who looked in my nose and blew me off completely declaring there was nothing wrong.  Since my insurance doesn’t require referrals, I then went straight to an ENT.  The ENT scoped me and found no visible infection, but did see the abnormal degree of postnasal drip and some inflammation.  He prescribed a round of antibiotics and steroids.  This failed to change anything and a second round was offered.  After that they did a CT scan.  I eventually had a small, endoscopic surgical procedure to help my sinuses drain more efficiently.  None of this changed the symptoms I was having.  These symptoms would all turn out to be caused by muscle weakness compromising the structures in my ear-nose-and-throat area.  I was embarrassed by my nasal voice and always told people I was getting over a cold or allergies, even though it wasn’t true.  Along with these speech and sinus issues, I also noticed I was choking on liquids and saliva a lot more than normal.  It seemed like such an odd, random thing, that I never even mentioned it to my doctor.

At the same time as my voice/speech changes and sinus issues, I noticed weakness in my left hand, which is my dominant hand.  I was taking sign language classes and noticed I could no longer form many signs, especially fingerspelling.  I also noticed that I was having trouble with my pincer grasp, and found it hard to open packaging, unscrew tops, and compress buttons.  I continued to have frequent muscle cramps in the fingers and thumb of that hand, often brought on by attempts to use those muscles.  Though I connected these cramps to the hand weakness, at the time I didn’t connect the tongue and jaw cramps to my speech and sinus issues.  It didn’t occur to me whatsoever that the speech and sinus stuff could remotely be related to my hand weakness.  The hand weakness was worsening at a very gradual rate, and was not painful, and for those reasons I largely dismissed it.  When I went for my annual well visit with my PCP that summer, the doctor was startled by my brisk reflexes.  I had never heard that before but quickly forgot about it.  By late fall/early winter my hand weakness was still persisting and progressing, though still painless.  I actually told my husband, very worriedly, that I thought it might be something neurological.  He suggested it could be a pinched nerve.  I went to my PCP about it and she examined it for signs of carpel tunnel, which she said there was no evidence of.  She seemed very unconcerned and suggested it might be tendonitis.  She told me if it didn’t resolve in a few more weeks to call the Orthopedic Hand Clinic for an appointment.

In late January of 2017 I finally got around to going in to the Hand Clinic.  They examined my hand thoroughly and did many types of strength tests on the hand and fingers.  They took x-rays.  They asked me repeatedly if I had any pain or numbness (no to both every time).  At the end, the doctor told me he was pretty sure there was a neurological problem, and that he was ordering an EMG to rule out a pinched nerve or other problem originating in the hand or arm as opposed to the brain.

The EMG was scheduled for just a few days later.  I spent a lot of time googling now that I knew I most likely had a neurological problem.  I randomly came across ALS and saw the early symptoms list.  I remember that moment so clearly.  I was standing in line at Staples, bored and searching on my phone.  I scanned the list– painless, progressive weakness, slurred speech, nasal voice, difficulty swallowing, muscle cramps, muscle twitching, inappropriate laughter or crying, hyper reflexes, spasticity…  When I saw that list I was overwhelmed with recognition, with this soul-deep knowing.  It was exactly how I felt the first time I came across a list of early signs of autism.  Autism had not been on my radar at all and I had known very little about it.  But the very first time I came across an early signs list while searching to understand R’s atypical development, there was an instant, deep knowing that this was IT.  As I stood in the Staples line and scrolled down to read more, I read that “ALS is universally fatal…there is no cure for ALS.” I felt my stomach drop, and when it came back it was filled with lead.  I remember turning my screen off and putting my phone away and thinking there was no way.  Reminding myself that Dr. Google is notorious for making it seem like your mundane minor symptoms might secretly be a rare and deadly disease.  But a small voice told me that I wasn’t one of those people.  I’m a damn good googler and I couldn’t think of a time when I had mistakenly thought my or my child’s symptoms sounded like they were something this serious.  And I had been googling about my hand weakness only, I had not thought to connect my speech and swallow symptoms to the hand weakness, the ALS page provided that connection, which made it seem more eerily true.

By the time I went in for my hand EMG I had read enough about ALS to know that it was:
1) rare in people under age 40 (mean age of diagnosis is 55)
2) more common in men
3) notoriously hard to diagnose due to mimic diseases and the fact that there is no single “test” that will show it

This information gave me a measure of relief.  Statistically it was so unlikely for a woman my age (31 years old) to get ALS.  It was more likely that a different cause for my symptoms would be discovered.  So I went in for my EMG feeling cautiously optimistic.

When I arrived, the doctor, a neurophysiologist, began asking me about my hand weakness, which I described and showed him.  He examined my hand and then did a quick neurological exam, commenting on my hyper reflexes.  He then began flicking my fingers.  Whatever he saw concerned him, and he flicked them several times more.  I later learned that he was observing that I had Hoffman reflex, an abnormal reflex not usually present in healthy adults.  This, like the hyperreflexia, can be a sign of upper motor neuron degeneration in ALS.  He then performed the EMG and NCV on my hand and arm.  He said that he saw abnormalities and that whatever was wrong was definitely neurological and not in the arm or hand itself.  He then asked about my voice and speech and I told him about my other symptoms.  Though I pressed him, he refused to speculate as to a diagnosis, but told me he was ordering an MRI of the brain and neck and would have them rush it so we could get answers more quickly.

When I got home I did some more research online and discovered that if my MRI was clear, ALS was still on the table, but that if my MRI showed any lesions I might have Multiple Sclerosis or something else, and ALS would be unlikely at that point.

My MRI was clear, but the neurophysiologist referred me to a neurologist specializing in MS anyway.  The neurologist did a comprehensive neurological exam and medical history.  She showed me that I had atrophy (muscle wasting/shrinkage) of my thumb muscle.  She examined my tongue and immediately called over her resident to show her my tongue fasiculations (muscle twitching that occurs in ALS).  At the end she told me that she was concerned that I may have a Motor Neuron Disease like ALS.  She told me she was ordering a more comprehensive EMG, lots of bloodwork, and referring me to the Neuromuscular Clinic.

The comprehensive EMG appointment took 4 hours.  I had continued to do research online leading up to this appointment, so going in, I already knew a few things.  The appointment, like my hand EMG, would consist of two parts, the Nerve Conduction Study, and the needle EMG (electromyography).  In ALS, the NCV portion is usually normal, and it is the needle EMG where abnormalities would show up.  For the NCV the doctor places electrodes over the muscles being tested and sends brief bursts of electricity into the muscle.  The electric conduction is then measured in terms of velocity.  So basically the doctor shocks you over and over.  Fun times, but the fun doesn’t stop there.  Part two, the needle EMG, involves the doctor inserting a needle into the muscle which takes data both while the muscle is still and then again while you flex it.  This is repeated for each muscle being tested.  For me, they did my thumb, two or three arm spots, two lower leg spots, one upper leg spot, two spots on my back, and my tongue.  Everyone I’ve told about this thinks tongue must have been the worst, but to be honest, thumb was the most painful, closely followed by one of the upper arm muscles they did.  The doctor who did the test was a Neuromuscular Neurologist.  She also did a neurological exam and had me repeat the whole story about my symptoms, my previous doctors and tests, and medical history.  At the end of everything she told me that the most likely diagnosis based on my exams and the EMG was ALS.  She gave me a provisional diagnosis of Motor Neuron Disease, ordered more bloodwork, ordered breathing tests, started me on an ALS medication (Riluzole), and referred me to the ALS Clinic for an official evaluation and diagnosis.  This was March 3rd, 2017, and it was my initial diagnosis day.

Three weeks later, On March 24th, 2017, I had my first visit to the ALS Clinic.  It was a 5 hour visit.  I was seen by a Pulmonologist experienced with ALS, and a Neurologist specializing in ALS, as well as several other related clinicians that collaborate at the Clinic.  Extensive neurological testing and strength testing were performed, and I was interviewed at length about everything.  Finally the neurologist told me that I did indeed have ALS.  She told me I was considered bulbar-onset (meaning onset in the speech and swallow region).  She told me that while most patients live 3-5 years after diagnosis, for bulbar-onset patients the average is usually about 2 years.  She was extremely thorough, she provided me with tons of resources, medication to treat my PBA, referrals for a 2nd opinion, a swallow study, and an OT evaluation.  She even called me at 8pm that same night to make sure I had the correct referral information for my swallow study.  She was doing all the right things.  But when my husband and I talked about it later, we both confessed we didn’t like her.  When I shared this with a friend I had made online- another woman living with ALS who was also in my state (thank God for the internet right?), she gently suggested that perhaps we were struggling with our feelings about her telling us those statistics (2 years for bulbar onset ALS).  I realized she was right.  I was angry about the doctor saying that.  I felt the doctor should have slanted it positively- should have pointed out that 10% of people with ALS do live longer than 5 years post-diagnosis.  That I could be in that 10%.  I realized it didn’t make sense to reject the doctor because she told me the stats straight up.  I’m better off with her than someone who tells me things in nicer terms but is less competent.  As an aside, I’ve seen her several times since then and I really like her now.  She is an excellent doctor and is kind and compassionate.  I guess it’s just hard to like someone in the initial aftermath of being told such devastating information.

On April 11th, 2017 we went for my 2nd opinion at the MGH ALS Clinic in Boston.  This was technically a 3rd opinion since I’d had my first diagnosis with the neuromuscular neurologist before being referred to the ALS Clinic.  With ALS the standard is to always get a second opinion with an ALS specialist.  This is because it is a hard disease to definitively diagnose and it is such a serious diagnosis that you need to be absolutely certain.  The 2nd opinion appointment was anticlimactic.  The neurologist had reviewed my file already (my file had been sent over ahead of time).  She listened to my story and did a neurological exam and strength tests.  That took about 20 minutes and then she informed us that she agreed with the diagnosis and that I did indeed have ALS.  She went on to discuss research with us- upcoming clinical trials, a new drug about to receive FDA approval (it has since been approved- the first new ALS treatment to receive FDA approval in 2 decades).  She projected an attitude of hope which I appreciated.  We went home.  The diagnosis process was officially over.

I think I’ll save my reactions to all of this for my next post.  I will say my reactions continue to change between states of shock, denial, disbelief, sadness, anger, numbness, neutrality, and hope.  Sometimes several of those at once.  It has been four months since my initial diagnosis, and I still don’t think it has 100% sank in.  But this post is long enough, so I will end here for now.

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!

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.