Colliding Worlds

Sometimes my son’s disability and mine meet in a strange and gravely beautiful way.  I hear him vocalize and I think my sweet boy is gaining his voice while I am losing mine.  There is something poetic about it.  I know rationally that the two events have nothing to do with one another.  But I would gladly give him my voice, go silent forever so that he could speak.  Sometimes it feels like that’s what’s happening.  A precious exchange.  Perhaps that is just a notion my psyche has conjured to protect itself from the horrors that await me with this disease.  If I can fantasize some purpose to my loss, some meaning to it, it won’t frighten me so terribly.

I cannot pick my boy up anymore.  It’s been months now that I cannot lift him.  R does not use any functional speech but communicates in a secret body language with us.  He grabs our arms and places them around his hips, pulls and lifts on his toes in a silent but clear request to be picked up.  When he asks me to hold him I call my husband, and my husband lifts his weight while I hold him in my arms in a pantomime of how I would hold him before I got sick.  I have often wondered if he realizes I can’t lift him, or if he thinks we are just behaving strangely.

A few days ago I sat on the grass watching him play with his dad.  He suddenly ran to me, pulled me to my feet, and positioned me as if to say “don’t move.”  He then ran to his dad, hand led him to me, and then requested I lift him while placing his dad’s hand on himself from behind.  It was clear he did indeed understand that we needed dad’s help for me to hold him.  He effortlessly puppeteered us into position for me to pick him up with my husband lifting his weight.  We did, and he lay his head on my shoulder and melted into me.  The intensity of my emotions hit me like a ton of bricks.  I had forgotten how it felt to truly feel the weight of his form against me, his body soft and warm, the smell of his hair and skin.  We’ve done this before but never so absolutely.  This time he gave himself completely to our strange hug and it felt like before, like when I could truly stand and hold him in my arms.  He lifted his head from my shoulder and stared deeply into my eyes while clutching my shirt in his little fist.  This kind of eye contact is so rare and when I get it from him it feels like the most precious priceless gift.  Like the clouds have parted and we are bathed in warm angelic light for a few unearthly moments.

Sometimes I worry that R might lose interest in me as my disease progresses.  That if I can’t speak to him at all, if I can’t use my hands and arms to soothe and tickle and hug and hold him, that he will find he no longer needs me.  But moments like R’s request to be held soothe my fears.  I will always be his mother, and our bond can survive this, it can.

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Addendum

I’m adding this addendum to my last post because this happened, and then this excellent, perfectly stated response happened.  And I realized that in my last post when I said if your child doesn’t like going somewhere don’t go, it may have sounded like I was suggesting “just be house-bound” or “don’t try outings that may be difficult.”  It may have come off as cavalier and that was not my intention.

My intention was to say: (1) go places your child likes, as opposed to places you think he/she should like, and (2) if its a place you think they would enjoy if only it could be accessible for them, work on making it accessible rather than forcing them into it in spite of it being set up in an inaccessible way for your particular child (eg sensory overload).  And finally, remember, as Tonia points out, sometimes you have to be patient and wait until your child is ready to enjoy certain outings/activities, because our kids have their own timeline, and it diverges from the neurotypical timeline for a lot of things.  And that’s okay.

Let me give some examples from my own experience.

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Driving for a day trip to NYC this last Saturday. For the last few years we wouldn’t have been able to do this. In the picture R. is smiling so hard because sister’s feet are in his lap.

Up until a few weeks ago, we had not gone out to eat as a family in about four years.  R. simply could not tolerate that environment, and the few times we tried it involved one parent going outside with him while the other ate with my older two kids, then a switch so parent #2 could eat while #1 went outside with R.   We found this arrangement rushed and unenjoyable, so we stopped trying to do it.  This was not an autism tragedy.  We simply adapted.  We enjoyed plenty of take-out instead, and from time to time my husband or I would take the older kids out to eat while the other parent stayed home with R.  This gave us a chance to have one-on-one (or one-on-two) time with them.  My husband and I would also occasionally go out for lunch just the two of us while the kids were all at school.  It worked, and it was no big deal.  But a few weeks ago, at age 5, we were able to go out to eat, all of us together as a family, for the first time in years.  It was exciting and we had fun.  And yes, it only worked because we set up strategic accommodations for R, and because we were patient enough to wait until he was ready and able to handle it.  In terms of accommodations, we went during non-peak hours because R cannot tolerate large groups of people.  We grabbed a large L-shaped booth in the back where we stationed ourselves on either end of the L-shape so that R could not bolt away, but had plenty of room to pace and jump back and forth along the L-shape.  We chose a restaurant with very loud music so that R could vocally stim loudly without disturbing others.  We brought his iPad so he could watch his videos, and we brought his own food (the restaurant was gracious enough to allow it) because his diet is very limited and we knew he would not eat anything we ordered.  I also want to reiterate that even with all these strategies in place, for the last few years it still wouldn’t have worked because he wasn’t ready yet.  And I think I should point out that R is hyposensitive to most sensory input, which is why this worked for us.  A child who is hypersensitive would need a quieter restaurant, and perhaps headphones to cancel out the background noise.

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R. with his uncle.  This is the first time in several years that we could take R. to my parents’ for Christmas. He was ready, and he did great.

In the beginning of this post I linked the Washington Post article about a mom who traumatically forced her five-year-old Autistic child into indoor spaces that caused panic attacks for him in an effort to make him overcome his anxiety.  Anyone who has followed my blog knows that for a very long time R had that same anxiety and panic in unfamiliar indoor spaces.  I have written about it in several posts like this one and this one.  Our approach for places he *had* to go to (not like Ellenby, who forced her son into a Sesame Street concert) was to work on it for months in the tiniest possible increments.  And when it came to non-essential places, like recreational spaces, we waited, and in the meantime, spent lots of time outdoors since he was fine in outdoor spaces.  This was limiting at times.  We could not visit family, they had to visit us.  If we wanted to take our older two somewhere, one parent (usually me) had to stay back with R.  But it wasn’t the end of the world and it wasn’t all about our sacrifices as parents.  We tended to think of it terms of poor R, who had to struggle with this huge anxiety despite being such a tiny little boy.  I have anxiety myself and have experienced panic attacks.  They are so terrifying.  And knowing that my toddler was having panic attacks broke my heart into a million pieces.  So no, staying away from places that caused a panic attack was not some huge sacrifice for us, it was really the least we could fucking do for our sweet little boy.  So we waited, and as he grew and acclimated to more indoor spaces (school, doctor’s office, etc) we slowly introduced new spaces with careful accommodations in place.  For example the Boston Children’s Museum does accessible mornings and evenings where they will open the museum during off-hours.  It is open only to children with disabilities and their families, they limit it to a small count of people (R cannot handle crowds so this is crucial for him), and they make sensory accommodations like low lighting and sound.  The first time we tried it he could only handle it for about 15 minutes, then he needed to leave so we left.  The next time he was able to stay for a whole hour.  We followed his lead and took it slow.  Now, at 5, he is in a place where he can go most places as long as it is not crowded and for discrete amounts of time (he makes it very clear when he is done and needs to go).  He also generally needs to be able to stim freely to help himself cope, so that also factors in when we choose where we are going.

The bottom line is be flexible and be patient.  And if, as time goes by, you see that the severe anxiety is not abating despite all efforts and despite the child’s growth and development, eventually the option of medication should be considered.  I know several parents of Autistic children for whom pharmacological treatment of severe anxiety was life-changing.  I’m sure you can imagine what it’s like to finally see your happy, smiling child again.  We need to end the stigma surrounding medications for mental health.  It shouldn’t be the very first thing we jump to, but when other approaches fail, an individual should not be left suffering when there are pharmacological options that could greatly improve their quality of life.

Alrighty, I’m off my soap box.  Thanks for listening. 🙂

Dear autism parent…

Okay.  I’m going to vent here a little.  And I’m sorry/not sorry if I am, in this post, seated on my proverbial high horse.  A Facebook discussion really got this topic back on my mind.  It drives me nuts when people share videos/blogs about how hard it is to be the parent of an Autistic child.

So much ‘autism parent grief’ is preventable if said parents could just let go of what they thought parenting would be like, and create something new that fits their child and their family.  This phenomenon is not restricted to parents of Autistic kids.  I’m sure every parent recalls those moments with their NT child where they envisioned this wonderful parent-child experience, but instead the child hated it and it was a disaster.  I think the meme below, created by and for parents of NTs, illustrates it beautifully.

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The difference is, it happens a lot more often and more dramatically to parents of Autistic kids.  And while I understand parents’ disappointment of lost expectations, there is a point at which you’ve gotta put on your big girl panties, accept your child, and stop setting yourself up for more disappointment.  …and setting your child up for more misery (!!!).

I can’t count how many times I’ve read an autism parent blog lamenting the tragedy of another birthday during which their child covered his/her ears and screamed at the Happy Birthday song, then proceeded to have a meltdown at the sensory overload and social overwhelm of the whole event.  In these parents’ narrative it is not the child who is the victim of the story, it’s mom and dad.  Poor mom and dad, who can’t even experience a proper birthday with their child.  These parents will go on to repeat the whole fiasco next year.  And they will grieve it.  Again.  And their child will suffer.  Again.  Folks, this is completely preventable.  It’s not your day, it’s your child’s day!  Stop singing Happy Birthday if your child hates it.  Stop inviting all these people over.  Figure out what works for your child to make it a special day and do that.

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My son does not recognize gifts. But he LOVES Target, so for one of his birthdays, we pasted Target logos all over his gifts to make them attractive to him. This is one tiny way we were able to adjust to make his day special.

I see it with other stuff too.  Trips to places the child is “supposed to” enjoy but doesn’t.  Child doesn’t want to sit on Santa’s lap.  He or she is screaming, self-injuring, melting down.  Mom is moaning to the internet about how hard it is, how terribly sad, how all the nice little neurotypicals waited happily in line, smiled big for Santa.  But your child didn’t.  Guess what mom?  Stop taking your child places he/she cannot tolerate and this won’t happen.  It’s that simple.  There was a family in an autism documentary I watched where the little boy’s favorite thing was to ride the city buses.  Every day after work his Dad took him to ride his favorite bus lines for a few hours.  That is what he loved, and so that is what they did together to connect and bond.  In the end, shouldn’t it be about our kids?  Stop making it all about you.  Yes, it’s hard sometimes.  You know what, parenting is hard.  Take care of yourself, seek out supports, but when it’s you and your child, structure your family in a way that accounts for your child’s individual needs, challenges, interests, and joys.

When I talk to parents of a newly diagnosed child, one of the first things I always try to impress upon them is this: adjust your expectations.  When you do, it has the power to change your entire outlook from a grief-centered perspective to a contented “this is our awesome family” perspective.  I suppose that is the basic message of the famous “Welcome to Holland” poem which is oft shared with parents of newly diagnosed kiddos.  And it really makes all the difference.  Don’t set yourself up for more grief, more disappointment.  Don’t make your child suffer for your own rigidity (hah- do you see the irony?).  Find a way to be flexible, to grow your parenting into something that fits with your kiddo.  Welcome to Holland.  It’s not Italy, but it can absolutely be great, if you would only give it a chance.

Identity and Learning How to Be [Sick?]

Our identities are not fixed entities.  They are living, changing, faceted.  I visualize my identity as a word cloud (if you’re not sure what that is see some examples here).  More prominent aspects of my identity would be in large bold print, with smaller facets in smaller print.  What’s more or less prominent changes throughout my life.  Some facets of my identity are lost or discarded altogether, while new ones come into play.

I remember when “mother” became the most prominent aspect of my identity.  And alongside “mother” would have been slightly smaller but still prominent labels such as “breastfeeding” and “attachment parenting.”  Then one day “autism” became one of the biggest words on my imaginary identity cloud.  For the first two years after R was diagnosed, autism ruled so much of my thoughts and daily life.  Our schedule revolved around therapies and doctors and specialists.  Our son barely slept which meant we barely slept.  A lot of things in our household changed to accommodate his needs.  But gradually we got into a good rhythm.  We learned how to make our house child-proofed and autism-friendly.  Our son got the right blend of meds to sleep a six hour block.  He started school and had a great routine.  Suddenly, I had 3 kids in school all day.  Stay-at-home-mom no longer seemed like a prominent component of my identity.  While autism will always be a big part of our lives, it no longer seemed like this huge deal.  It was just our family’s normal, just life, and so it faded smaller in my identity cloud.

Around this time I remember feeling like I wasn’t sure who I was supposed to be anymore.  I’d had given so much to motherhood, but now my kids were growing, needing less from me in some ways.  It wasn’t a huge identity crisis, just this realization that I now had 6 hours per day to myself with no mouths to feed, diapers to change, or shoes to tie.  I decided to go back to school.  I realized with mounting excitement that I could actually build a career, one that I enjoy and find fulfilling.  I saw myself in the future doing part time work in a field I was passionate about.

So I went back to school full time to study social work with an emphasis on disability.  Suddenly, “student” was back on my identity cloud.  It wasn’t easy fitting school into my life as the parent who acted as primary caregiver while my husband worked and had a lengthy daily commute.  We ordered a lot of takeout, and the housework, normally more my responsibility, took a bit of a dive.  But I loved it, and I finished all my classes the first semester with a 4.0.  I was in the middle of my 2nd semester, with an acceptance letter and scholarship offer for the social work program I had wanted, when my ALS symptoms became troubling enough to start sending me from doctor to doctor.  A few weeks later I was diagnosed with ALS.  It changed everything.

When someone tells you that you may only have a few years left to live you have to decide how you want to spend the time you have left.  As much as I was enjoying school I realized this was no longer the path for me.  For one, things like typing had grown much more difficult due to my weak hands.  Then there were other logistics to consider- I would be driving 30-40 minutes to campus, but how much longer would I be able to drive independently?  As an aside, at this present time I no longer drive unless it’s an emergency and a very short distance.  I also thought about how working wouldn’t be possible.  And even if it was- even if school and work were all possible with the right supports- was that how I wanted to spend the time I have?  I decided I would rather focus on spending time with my family and doing things I enjoy while I can still do them.  So I withdrew from school and we booked a trip to Yellowstone.

It’s been almost a year since I was diagnosed.  My ALS progression has been quite slow so far, compared to a lot of PALS (people with ALS).  But I’ve still lost a lot compared to the old me.  I cannot write legibly, zip up my jacket, button my jeans.  I can’t clip my nails, pluck my eyebrows, or shave my legs.  I have trouble brushing my teeth without stabbing myself with the toothbrush because my fine motor control sucks.  As previously noted I don’t drive anymore.  My speech is altered, my gait is altered.  I have a feeding tube, and while I can still eat by mouth I have given up some foods and must be vigilant to avoid choking.  I drool at times while eating, and food gets stuck in the sides of my mouth because my tongue is too weak to push it back to where I could chew/swallow it.  I was never a tidy eater, but I in the past I considered my slightly messy, overly-exuberant eating style to be endearing, cute even (that’s what I told myself anyway).  But there is no longer anything endearing about how I eat.  It’s just embarrassing now.

In the wake of these changes I find myself sinking into a depression that centers around a feeling of identity crisis.  I’m not a student anymore.  And while I’m obviously still a mother and spouse, so much of what I considered to make up those parts of my identity have been stripped away.  I can no longer drive my children to activities, appointments, or simply to the park.  There is not a lot of housework or food preparation I can do.  And most painful of all, I can no longer even be home alone with my Autistic child because that would jeopardize his safety.  I am not strong enough to pick him up or lead him by the hand.  If he climbs somewhere unsafe I couldn’t get him down.  If he managed to bolt out the door I couldn’t catch him to bring him safely home.  I’m not strong enough to change his diapers because at 5 years old, his legs and bottom are too heavy for me to lift during a diaper change.  Nor am I strong enough to hold him in place when he resists being changed.  He needs an able-bodied adult with him at all times and that’s not me anymore.

My husband works from home as much as he can, and when he can’t, he still makes it home early enough to be there when R gets home at 4pm.  He waits to leave for work until R’s bus has picked him up (at 8:55am), even though this will result in a worse commute for him and less time at work to do work.  He makes all our meals, does most of the housework, does all the shopping.  He takes the kids to their appointments and activities.  Everything that I once did, now he does.  Sometimes I can see and hear how stressed he is.  Afternoons when R is struggling behaviorally, and the older two are bickering, and there’s dinner to be prepared and messes to be dealt with.  And I feel so guilty.  I feel so lazy and useless.  I sometimes try to help and end up making it worse.  For example trying to load the dishwasher but dropping the first glass I pick up because it’s too heavy.  It shatters all over the floor and now my husband has to sweep up glass on top of everything else.

I realized the other day that I don’t know who to be or how to be anymore.  How to be a sick person?  Or just how to be this version of me.  The disabled me.  Maybe it’s about that qualifier, disabled.  I used to be a mother, but now I’m a disabled mother.  And that’s something new I have to learn how to be.  A disabled mother, a disabled spouse, a disabled bibliophile, a disabled hiker and nature enthusiast.  I haven’t figured it out yet.  How to glue the pieces of my identity back together, or reshape them into something I can be inside this failing body.

I don’t even know what kind of sick person to be.  A brave one? (I’m terrified.)  A defiant one?  A fighter?  An angry sick person, or a sweet, gracious, compliant sick person?  None of them feel authentic.  I see other PALS blog pictures of themselves skiing mount such and such with adaptive equipment captioning something like “ALS can’t stop me!”  And here I am feeling like I’ve already let ALS stop me from…everything.  I’m too tired to be inspiring.  I’m not brave.  I just do what I am forced to do because of my situation and that is not the same thing as being brave.

I wish I had a deeply wise ending for this post that would pull it all together with some kind of personal epiphany.  I don’t.  It ends here.  Because I haven’t figured any of this out yet.  But I’m trying.

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.  

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.

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 in my leg, 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.