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.

To the Man Who Approached Me in the Stop and Shop Parking Lot

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I felt your eyes on me as I carefully removed my 3-year old son from the cart while his two older siblings loudly crowded into our minivan.  My youngest son R cannot help me get his body out of the cart.  He sits heavily, a dead weight, while I lift him straight up at the hips, struggle to disentangle his legs, and pull him into a cradle hold in my arms.  When he was younger this was easier, but the older and taller he gets, the more difficult this task becomes.  At barely 5’0 tall myself, managing to lift his body straight up and out is a challenge for me.  Feeling the weight of your stare, I tried to hurry up.  I hoped I could get him in his seat and whisk us all away before you decided to approach us.

You see, I knew what you were going to say.  We were parked in a disabled parking space, and none of us were using a wheel chair, or showed an obvious visible disability.  I have read all the stories.  Our disabled parking permit is new, but I know what happens to individuals with invisible disabilities and families like mine when we use these parking placards.  Inevitably, and by all accounts frequently, someone either approaches to admonish the individual for using the parking space “illegally,” or they leave a nasty, scathing note on the windshield.

I had just buckled R into his carseat when I heard your voice behind me, “Excuse me?”  My heart sank.  I hesitated, mentally practicing the script I had decided on the day we received the disabled parking placard in the mail: no, I do not have a disability, but my son does.  This is R, and he has severe Autism and multiple disabilities.  R cannot safely walk 200 feet without assistance, which is the criteria for this parking permit.  R must be carried to and from the car at all times, and that is why we use his disabled parking placard.  I turned slowly, ready to deliver my lines, and met your eyes.  You were an older man, with crisp white hair and a kind smile.
“Yes?”  I asked.
“Let me take your cart for you, I’ll put it back with mine, you look like you have enough on your hands,” you said with a gentle smile as you began pushing my emptied cart with one hand while you pushed your own with the other.  Stunned, it took me a moment to compose myself and then I was exclaiming,  gushing,
“Thank you!  Oh my gosh, thank you so much!!!”  Staring after you, astonished and touched.  You weren’t there to judge me.  You weren’t there to question me, or to tell me off.  You were just there to help.  You may have forgotten us already, but I can guarantee we won’t be forgetting you.  Thank you, you make the world a brighter place.  ❤

Invisible Disability

My son’s school’s PTO is sponsoring a workshop to promote acceptance, understanding, and awareness of disabilities.  All of the kindergartners and first graders will attend the workshop.  The flyer home requested that volunteers are still needed to staff the various learning centers they will be setting up in the auditorium for the two days that they will be running the workshop.  I was immediately interested in volunteering, and emailed the organizer, requesting that I be assigned to the station for Autism and/or Developmental Disabilities if possible.  It never once crossed my mind that such a station would not exist. But I shortly received an email response thanking me for volunteering, but letting me know that the workshop only has stations for vision, hearing, and physical disabilities.  Apparently this program has been in place for years now, and no one has ever thought to represent Autism and other Developmental, Neurological, and Learning disabilities.  Until me.  Now.  I replied, in part, with the following:

“…I find it very disappointing that Autism and other developmental disabilities are not already a part of this program.  Autism affects 1 in 68, and with the momentum of IDEA pushing for supports that allow our children to be included in the general education environment to as great an extent as possible, children like mine now rub shoulders with children like yours in every classroom in America.  I find it deeply hurtful that at a time when education, understanding, and acceptance is most needed, an established program to promote these very same principles for children with disabilities would choose to exclude such a large population of disabled children whose at times “invisible” disability makes them incredibly vulnerable to bullying and isolation.

Who can I contact to ensure that in future years children like mine will be represented in these workshops?  I would be happy to volunteer my time and energy to help facilitate this.”

In reply the organizer recommended that I put forth a proposal to the PTO at their next board meeting and said they would look forward to my involvement in including Autism and related disabilities in future years’ workshops.

While I’m glad that I have a chance to make a change here, I still have a hard time accepting that no one has spoken up before now about this.  I would also imagine that the PTO did not consult with the SEPAC (Special Education Parent Advisory Committee) when beginning this program because I can’t imagine that the SEPAC would have let this slide given that more than half the parents on it have Autistic children!

It’s 2016.  Our children are no longer secreted away, segregated outside of mainstream society.  Our children are everywhere.  They are in your classrooms, they are in line behind you at the supermarket, they live a few doors down from you, they flap and squeal at the playground, you see them jumping and spinning at the park.  Our children are right here, and more than ever they need the understanding, acceptance, and support of their communities.  I will not let the PTO forget my son next year.  I plan to make some noise, insist that the SEPAC be included in the planning of this event, and hopefully, facilitate a change.  One little lower elementary school at a time, right?