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.

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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.

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!

Functional Speech

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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.