If you know Reza in person or have followed my blog at all, you’ll know he loves to climb and can scale just about anything. He enjoys climbing in our garage and we usually let him roam in there with the interconnecting door open so we can check on him every few minutes.
Yesterday while he was playing in there we suddenly heard panicked cries. My husband ran in to see what was wrong, but, at first, couldn’t see Reza anywhere. He followed the sound of the cries to the window, where Reza was hanging by his fingertips from the lower ledge on the outside of the garage! Apparently the window had been open, and he pushed the screen out and tried to climb down but got scared and stuck. When we got close enough to help, we realized Reza was crying “I love you, I love you, I love you!”
We reflected afterwards that Reza probably associates those words with being hugged, being held, and feeling safe. We say it to him over and over in that context of physically enveloping him in our arms and our safety and security. So when he was hanging there, terrified and needing to be hugged, held, and safe, he cried out “I love you!” as his plea.
I cried a little. I wonder if he’s internalized the meaning of “I love you” both in that especially literal Autistic way, but also in its abstract sense.
My entire adult life to-date, when I approached a new life stage that I was unsure of, I would find books to advise and guide me through it. Often, I sought out multiple perspectives on the matter that allowed me to find my way. Books on marriage, pregnancy, breastfeeding, parenting, and autism still scatter throughout our bookshelves. So naturally, as I contemplate my own death in terms of my ALS diagnosis, I have been looking for books on how to die. How do I make the most of whatever time I have left while simultaneously coping with the grief and fear that accompany this process? How do I find spiritual peace in coming to terms with my end? How do I manage my time, now that it has become so definitively finite? Sometimes so many days and weeks pass in mundane every-day-life activities and I begin to feel terribly anxious that I am just wasting time that I cannot afford to waste. Yet, it is simply not possible to fill all my days with extraordinary experiences. The questions go on and on, and I felt certain there must be guide books out there- books on how to die. Unlike marriage or motherhood, death is a certainty for absolutely every single one of us. So surely, I thought, there must be many books on this subject. But I couldn’t find a single one. Not one.
There are related books– books for those we leave behind- on how to cope with a loved one dying. There are memoirs by those who are diagnosed with terminal illnesses. There are books on chronic illness, and books on making medical decisions when faced with a terminal diagnosis. But I could not find any books specifically on how to die in the non-medical sense.
At first I thought it was because no one has died and come back to write a how-to guide for us. But then I realized that made no sense. Most pregnancy books are written by doctors not mothers, most parenting books are written by psychologists or other “experts” not parents, and so on. The reason professionals tend to write these books is because they have seen hundreds of people go through whatever it is they are writing about, whereas those of us who have been through it ourselves only really have our one particular experience to draw from. So why hasn’t a doctor or therapist or social worker who has watched hundreds of patients go through their deaths written a book to help guide those of us newly on this final journey?
While it’s in the form of a memoir, I did find a book that I thought would offer me some insight, called The Bright Hour by Nina Riggs. I think it’s particularly relevant since she was also a mother of young children when she received her terminal diagnosis. I’m going to start with that and see if it is helpful for me. But I find it strange and rather culturally telling that there are not really books out there on how to die.
I use a wheelchair part-time right now. Which basically means if we are going to be somewhere where I have to stay on my feet for more than 10 minutes I use the wheelchair. I sometimes feel embarrassed knowing people have seen me walk, but have also seen me in my wheelchair. I wonder if they think I’m a fraud or something. Part of the reason I use the wheelchair is because I don’t have the stamina or muscle strength to walk for very long. But another big part of the reason is falls.
For a lot of people with ALS (hereafter I’ll use the acronym PALS), falls are the first symptom of this disease. The majority of PALS are limb-onset, and of those, it is more common to start in the legs/feet. I am bulbar onset, meaning it started in my speech/swallow region. When I was first diagnosed my legs were totally fine to walk and run. As the disease has progressed it has slowly been making it’s way down to my legs. Over the past few months I’ve started having falls. The problem with falls for PALS is that we have weakness in many parts of our body and that often means that we are unable to maneuver ourselves mid-fall. It’s more of a rag-doll fall, zero control. This is so hard to describe to someone who hasn’t experienced it. Suffice to say, you have no idea how skilled you are at falling until that skill is removed.
I had a fall the other afternoon. My head smacked against something and opened a small wound that bled like crazy and scared my husband! Luckily, despite all the blood, it did not need stitches so I am recovering in the comfort of my own home. Falling is dangerous for PALS, and it’s a big reason to start using the wheelchair, or another mobility aide if one is deemed more appropriate. Not only are falls dangerous in terms of potential for acute injury, but, for reasons not entirely clear, falls seem to speed up disease progression in PALS. And that is the absolute worst thing for us.
So the next time you see someone in and out of a wheelchair keep in mind there are many people with all different disabilities who legitimately need a wheelchair but can also sometimes walk.
A few weeks ago I wrote a post that I titled Everything is Not Okay. I wrote about my deep fears and anxieties about what is happening to me, and about death. I wrote about my kids and how this affects them. I wrote about the day-to-day struggles. I wrote about choking and laryngospasm episodes where I feel like I’m suffocating to death. Those moments of thinking “I’m really going to die right here at the dinner table in front of my children,” and the trauma that leaves on my psyche afterward. I got a lot off my chest, which was good, but I couldn’t bring myself to publish the post. It sits in my draft pile and it will maybe get deleted, or maybe just sit there unpublished like a private diary entry.
So no, everything is not ok. Even though when asked I always say “we’re ok,” “we’re fine.” In general I’m objectively not okay. I have a degenerative terminal disease. So no, everything is not okay. BUT. But.. But in this moment, I am okay. Okay enough to be here writing to all of you. Okay enough to share some things, and keep others to myself. Okay enough to smile at the birds outside my window.
My experience with the unpublished post made me realize I need to share more. Not everything- I want to keep my darkest most vulnerable stuff to myself. But I think if I explained some of the things I experience on a regular basis it would both inform others and help me feel less isolated. So stay tuned. I’m going to dedicate the next several posts to these topics.
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.
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.
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.
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. 🙂
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.
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.
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.