How would we have done it?

One phrase that I think most families with special needs children don't like is "How do you do it?", sometimes phrased as its twin "I don't know how you do it!"  We know the phrase is usually meant in the kindest of ways, and that it's an acknowledgement of some of the struggles our families can face.  But it can feel hurtful in a couple ways.  One is that it makes it seem like our child has created a situation so difficult that others can't even imagine what it would be like to live our life.  Another is by saying, in a way, that we ARE doing it, by making us somehow separate, set apart, somehow as a family unit handling it all ourselves, and not in need of help, due to our superhero status.  Both views of our families are untrue and unhelpful.

That being said, lately I've been thinking a version of the "How do you do it?" myself.  It's in the form of "How WOULD we have done it?"  How would we have handled this pandemic, this lack of school, this isolation, during what I always think of as the Tough Years---approximately from when Janey was 5 until 10?  Those years...wow.  Those were the years in which an inclusion school which aimed to include all special needs students realized they were not up to including Janey, and then, while in the autism program she moved to, she was so unhappy and angry that the day came that I got the call that she wasn't even safe to go home, that we needed to come to the school to go with her by ambulance to the emergency room, the start of an ordeal which include six horrible days at Children's Hospital and 3 weeks of Janey being in a psychiatric hospital.  Those years featured many, many days where Janey screamed all day, literally, days when she bit herself hard, days when she cried heartbreaking tears for hours, nights of her fury and sadness that seemed like they would never end.  But during those years, there was school.  We had about six hours a day when we could sleep (or often, just I could---Tony was working, most of that time at a job an hour from home, and how he ever lived through those years I'll never know), recover, breathe, know that she was cared for.

But what if the pandemic had been during those years, and there was no school?  I think about that all the time, and I truly wonder how we could have done it.

Of course, the thing is, lots of other people with children with severe autism are living through those tough years right now.  And I think about them, all the time.  I think about how it must feel to have a child so desperately unhappy, and to be trying so very hard to help them, and having absolutely no respite---no school, no activities, no nothing.  I think of them trying to think of ways to fill the days, and to get some rest.  I think of the siblings, trying to learn at home in a household that might be often filled with screaming or hitting or crying.

If COVID-19 had happened during the Tough Years, I have to say honestly that I would have sent Janey back to school the second school was open, even if I wasn't sure it was safe, even if I had huge fears about the virus.  I would have sent her because I would have known that we simply had to---in order to stay sane---not just us as parents, but her too.  I would have taken the risk, the possibility of sickness weighed against the absolute knowledge of what more time at home would be like.

This knowledge is why I am not sure how I feel about schools staying closed. If we lived in an ideal world, I would feel sure they should stay closed, but we don't live in that world, and I know there are families out there right now just barely hanging on.  I think about the teachers, with families of their own often, and I know they will be put at risk going back to in-person school, as well as the aides and lunch workers and bus drivers and therapists.  I worry about all of them.  But I can picture most, of course, the situation we have lived through, the child who needs help so badly and the family so extremely stressed by that child's needs, and I worry so much about how they are managing to go on. I know some of you reading this might be living that life right now, and feeling like you are very alone. I wish I could help more. I wish I could come to your house and take care of your child for a day or two, so you could sleep and recover. I wish I had magic.I wish I could fast-forward your life to calmer years.  But right now all I can do is tell you I am thinking of you.

We are so lucky.  Janey, at almost 16, is happy most of the time.  Aside from a period of adjustment at first, and from the days she got upset by Zoom meeting school, which we will no longer do, she has been a champ during this time at home.  We are enjoying her.  Most of that is just her maturing.  Some of it is changes we made, changes in our expectations of her and also changes in our lives.  Tony retired early, which has been a financial challenge but without a question absolutely a right decision.  The boys are older.  We are okay.  We hope that Janey can safely go back to school at some point, because she loved high school, but for now, we are okay.

I hope all those in the places of decision making do give a thought to those who are in the Tough Years of severe autism.  I hope we can find a way to help those families get through this.  I won't say to them that I don't know how they do it.  I know how they do it.  They do it day by day, hour by hour, minute by minute.  They do it because they love their kids, their amazing kids.  But they need help, and we as a society need to figure out how to help them, especially in these extraordinary times.

The tension of a guard never fully let down

The last few weeks, I've been very tense.  It's strange, because, as I've written recently, Janey has overall been fairly calm.  She's had an increase in crying the last few days (jinxes are real, as all Red Sox fans know!), but my tension predated that behavior spike.  As I lie awake at night lately, I think "Why in the world are you so tense?  Why can't you relax?"  Last night, I answered myself.  I said "Think about the last eight years of your life"

In the last eight years---well.  Janey had her horrible regression and was diagnosed with autism.  We had countless days of all-day crying and screaming, many nights with no sleep at all.  The school our children had been attending for many years and the school I thought Janey would go to until age 22 decided they could no longer handle her level of disability.  After about six months at her new school, she went into a crisis and wound up first boarding at Children's Hospital for six unbearable days and then spending three weeks in a psychiatric hospital.  Then, the next year, after three days of increasingly severe symptoms, she was diagnosed with a burst appendix, had emergency surgery and then weeks and weeks in the hospital with complications.  Last January, a bad flu and pneumonia landed her back in the hospital for a few days.  Top that all with life's regular stresses---two sons in college, financial challenges, the everyday this and that and the other thing....well, let's say that if I wasn't tense and stressed, it would probably mean I hadn't been paying attention.

But why can't I relax on days when everything seems fine?  It's because my guard is never, ever fully down.  A day that seems just fine can turn on a dime.  I can get a call from school that Janey is sick, or having a behavioral crisis.  Janey can come home screaming and biting.  We can have one of our occasional sleepless nights.  Janey can get a fever, not be able to tell us why and end up suddenly critically ill.  We can have a day where she is as sunny as she can be suddenly turn, for reasons we don't understand, and just like that we are dealing with a level of chaos some people might not see in a lifetime.

Stress in parents like ourselves is something that is very hard to understand unless you've lived it.  It's the reason sometimes it might seem like we overact to small things.  It's the reason we are not always quick to be excited about what seems like good news.  It's the reason we are often not ready to try new things, go new places, take any risks.  It's the reason some days I have the near overwhelming urge to get into the car and drive---drive far away, away from my life.  I can't and won't ever do that, but if I did, the thing of it is that I am sure the stress would follow me.  If Janey someday lives away from home, I know from hearing about others with autistic kids living away from home that you still can't ever relax.  Things can fall apart fast, wherever your child is.

And so---what can we do?  We can be easy on ourselves.  We can accept that stress, tension, worry, all those, are always going to be part of our lives.  We can treat ourselves when we can to life's little pleasures, without an ounce of guilt.  We can drink our coffee, play our games of Scrabble, watch our mindless TV, read our escapist books.  We can call friends and laugh like crazy over the phone.  We can let sleeping dogs lie, let our child watch that video for the 100th time while we sit and do nothing.  We can stop thinking, pretending and having to present an image that our lives are more in control than they are.  We can accept that we have in some ways been dealt a challenging card, and admitting that doesn't mean we don't love our kids, that we aren't good parents.  We can support each other.  And we can keep on going.  That last one isn't a choice, but some days, it's all we can really do.

Janey with a cold

For most kids, getting a cold wouldn't be too remarkable an event.  But Janey almost never gets sick.  She honestly has gone years without a sick day from school, years without a fever, years without a cold.  It's quite remarkable.

Yesterday, however, she woke up obviously sick.  She was coughing a huge cough, and  her nose was running.  And she wasn't happy, not at all.  I thought about what my mother has said---if you didn't know what a cold was, you'd think it was something very serious based on how it makes you feel.  And Janey had next to no frame of reference for her cold.  I can imagine how scary it felt for her.

She spent much of yesterday in fury and tears.  After about a month of fantastic behavior, it was hard to see.  When she is good, she is SO good that it's almost hard to imagine how bad it can get, although you would think we'd have better memories than that.  She came to my bed first thing in the morning and immediately bit me, which she hasn't done in quite a while.  I had to pull her off me.  She didn't bite again, but there was a very lot of screaming and hitting and fury, and some of Janey's unique brand of angry mischief.  She took a two liter bottle of soda and poured it in my dishwater, she threw ice cream at the television, things like that.  It was  a long day, but I kept reminding myself how she must have been feeling.

This morning, despite her cold, which was about the same, we decided to take her with us when Tony drove me to the doctors for a physical.  That was a good decision.  It seemed to reset her mood.  She was all smiles, and although she's been acting out a bit more today than on her very best days, overall, she is far happier than yesterday.

This cold has led me to think about a few theories I have about Janey's autism.  I truly think that something autoimmune is at least a very big contributor in Janey's particular case to her autism.  Our family is auto-immune central.  Just about every one of us on both sides has something going on that is an auto-immune issue.  I think maybe Janey has some small illness around the age of 2 and a half, and her body hugely over-reacted.  I can't remember the illness, but it wouldn't have had to be anything big.  It was the reaction that was big, way too big.  I think that same overactive immune system keeps her from getting sick, even when she's exposed to all the illnesses other kids in her classes have, or when she was at the hospitals she was at.

And I actually think this cold might be a good sign.  Maybe Janey's body is letting down its guard a little.  Maybe it's no coincidence she finally got sick now, after such a great stretch of behavior.

Of course, I'm not a doctor, or a scientist, or a researcher.  I am sure there might be all kinds of flaws in this theory, and I might be totally off, but it's a theory that to me, anyway, makes sense.

In terms of how we react to Janey, I've been thinking about how calmer behavior on her part leads to calmer behavior on our part.  If Janey had been in one of her very tough moods for a month leading up to this cold, we would have been much more discouraged by her behavior yesterday.  But at least for a day, we did pretty well handling it, I think.  We stuck to what we know works with her---keeping her active (which would have been hard if the illness was more severe than a cold), keeping our speech tones calm, keeping her well fed, telling her verbally what we planned to do and where we were going even if we were only leaving the room for a minute (that's especially important with Daddy!)

I hope Janey's cold is a quick one, and she goes back to her healthy ways, but I wouldn't mind a little illness here and there if it means her body is relaxing a bit, physically and mentally.

Happy Valentine's Day, autistic parenting style

Tony and I were married just a little over a year after meeting each other.  In that time, we discussed a few things about what we wanted out of our marriage, mostly to do with kids, but even if we had dated for 30 years, I don't think everything that actually has happened with us would come up.  Sometimes, we talk about our first kiss, and if somehow we had been able to see then into the future.  Would one or both of us have bolted?  We didn't see it all coming---the terrifying pregnancies, twice hearing that autism diagnosis, watching  Freddy struggle to breath more than once, caring for Tony's increasingly sick parents, seeing friends and family members die, the money struggles that never quite seem to get better, our own illnesses and conditions---the insulin shots, the thyroid woes, the high blood pressure and asthma and on and on, the days where Janey screamed for hours and hours on end while we helplessly tried to make her feel better, the struggles and cares and worries that married life has brought us.

And yet, I think I'd do it again, and I think Tony would say the same.  Because for all those moments, there have been moments that were better than we ever guessed life would be.  There's the times we all have laughed as a family until we cried.  There's the pride we have felt watching our boys grow up to be more than we ever, ever could have dreamed of.  There's the joy in our beautiful blond daughter, singing a song that fits the moment exactly.  There's the love we still have for each other.  Tony looks better to me today than he did that long ago first kiss day.  He's grown into a man that I think any woman would be lucky to be married to---a wonderful father, a fantastic cook, a caring husband---a terrific man.

Autism tries a marriage to near the breaking point often.  There are days when Janey has been screaming all day and Tony comes home and I lay into him, screaming at him for nothing, because I've held in the screams. There's the times we fight over petty things, when the fights are really pent up frustrations with the limitations autism has put on our lives---the lack of time alone, the lack of relaxed family time, the endless needs of a toddler in a 8 year old's body.  Autism and its trials have not always brought out the best in either of us.  But despite all that, I don't think I could find someone I'd rather go through all of it with.  I hope Tony feels the same way.  We need each other, more than most married couples need each other.  We literally could not do this alone.

I love you, Tony.  Happy Valentine's Day.