All the tough decisions---autism life in a COVID world

As the months go by and we are still living in this endless COVID bad dream, I suspect all of us living lives affected by autism are starting to feel the strain increase.  It's not at all easy for anyone, but for kids like Janey, and families like ours and so many of yours, it's a special kind of tough.

Starting with the new year, it seemed, Janey got more challenging.  We all did.  It's been a long, long haul, and it's winter, and the cases were increasing, and we all had been stuck together as a family for far longer than is mentally healthy.  The biggest issue was sleep.  Janey's sleep started a pattern of one night okay, one night with either a very late going to sleep time or a very early waking up time, and then one night of absolutely no sleep.  And although we did our bests to catnap while she was awake, or to sleep well on the nights she did, that kind of sleep cycle...wow.  We were snapping at each other, constantly tense, really not doing well.  

Janey, in trying to cope, I think, was developing some quite repetitive routines.  One was watching Toy Story 4, and sometimes Toy Story 2, over and over and over.  The other shows and movies she used to like weren't being watched at all.  And not even all of the two Toy Stories were, just certain scenes, repeated time after time.  And while watching them, Janey would laugh, that laugh I think you all know, an insane sounding loud almost humorless laugh, a fake kind of high decibel laugh.  The nights she stayed awake all night would feature that laugh off and on for hours up on hours.

We kept trying, as we have been, to do school at home.  We do the morning meeting, at 8, for which Janey showed varying levels of engagement, and then video lessons such as books with a theme for the week or lessons like a great one her teachers have developed about body awareness and pain.  When we can catch her in the right mood, she'll listen with interest and answer questions, but other times, she simply screams at the top of her lungs at the very mention of the classes.  We resorted to making the lessons a requirement before car rides or other fun times.  That's not how I want school to be for her, some kind of chore.  And that's never how it has been.  None of this is the fault of her teachers, who are doing a hero's job of it all in the midst of impossible challenges.  It's that remote learning is not how Janey learns, and I don't think it ever will be.

With all this, we decided after huge family debate to request that Janey go back to school, which supposedly was available for kids of her level of disability.  We had turned down what was called the hybrid model of learning before, where she would have been able to go to school 4 days a week.  I thought this was a reversible decision, and that by requesting she switch out of remote, she'd be quickly able to return to school.  Well, I should have known better, as in one of the hugely contrasts that exist, the difference between the fantastic teachers in Boston and the (I won't use some of the words I'd like to use here) middle and upper level central administration of Boston, the admin people showed their colors again, and it seemed somehow either impossible or incredibly complicated to switch her model.  Meanwhile, somehow there was supposed to be a switch for most special needs kids to in person on February 1st, but in one of the many conflicting and complicated emails I got, we were told since Janey was in the highest needs level and we had before requested remote learning for her, now that those with less severe needs were going to be able to go back, our previous decision to be remote had to stand, unless we did some complicated other form and (presumably) prayed it worked.  If you are confused, so am I.

However, Janey's teacher and I had the idea that perhaps Janey could go to school for one day, or one day a week, for state testing she had to have.  Even just one day was such a thrill for all of us to think of.  So a week ago Thursday, Janey went to school for a day.  She had a wonderful day.  We had a wonderful day at home.  The effects of that one day, even, last for days and days---better sleep, better toilet use, better moods, and Tony and I, after 10 full months of absolutely zero respite, had about 4 hours to ourselves between driving her in and picking her up.

Part of the day at school was a COVID test.  Janey wasn't excited about the prospect, and resisted at first, but her teacher told her that after the nurse "tickled her nose", she could have a lot of salami.  Brilliant!  She gave Janey a minute, asked her if she was ready, Janey said yes, and the test was taken successfully.

That first week's test was negative. We took Janey to school again last Thursday, so happily.  I especially needed a break.  Midweek I had developed diverticulitis for the third time in three years, with a fever and lots of pain, and a remote appointment and antibiotics and warnings of what signs to go to the ER immediately if I got.  Janey was tested again that day.

Saturday morning Janey's teacher called us to say that the pooled test, where Janey and one other child's COVID tests were combined together and tested, were positive.  Either Janey had COVID, or the other child did, or both of them did.  The school nurse called me a few minutes later (her teacher called me first to tell me in person, which I so much appreciated)  She went over the next steps, which was to get Janey her own COVID test.  

We are getting Janey's test today.  And I'll just note here, when mayors and governors and so on urge testing, well, could they make it a little damn easier to get a test, even in a situation like this where there is more than just an exposure, where there is a 50% chance Janey has the virus?  Can they make it so you don't have to call around for hours and EXPLAIN to the nurse you finally talk to what pooled testing even is, and hear her say "I've never heard of that! That's stupid!  I don't understand why they would do that!" and then act like saying Janey could get a test is some kind of huge favor, and then asking me "Will she even cooperate with the test?"  

Janey has a few mild symptoms which might or might not be significant.  A few nights ago she was coughing a bit, and she had some diarrhea, which is rare for her.  But yesterday and today she seems perfectly healthy and happy.  And thankfully, the rest of us don't show any signs so far.  But still, of course, we have to quarantine, and in fact, the whole high school is going to have to go fully remote (although only about 20 kids weren't remote)  So, for now, our plans of having Janey go to school in person again are at the very least on hold for a while.

I don't have a strong conclusion here.  Were we wrong to send Janey in for those two days?  My older son strongly, strongly feels we were, and maybe he's right.  But as I told him, he hadn't been up night after night with Janey.  He wasn't the one responsible for keeping her together day after week after month, or for trying to get her to access an education in a way she didn't want to and couldn't seem to, she wasn't the one without one second of respite from a very high needs child for literally almost a year.  We want Janey to learn, to be with friends, to have fun, to get the benefits of the wonderful teachers and aides and therapists that are there for her.  But of course we also want to be well.  And you can't really be mad at a virus.  It's doing what all of us are doing---trying to stay alive and go on.  

I'll try to keep this blog updated on Janey's test results.  I hope you all are hanging in there.  Please know you aren't alone during these long months.  There's a lot of us out there living this life.  Whatever decisions you make about schooling, know that you are doing the best you can in your situation.  And join me in hoping that a year from now, this will be part of history.  Please.

How Janey's brothers see her

Janey is extremely lucky to have two amazing brothers.  William is 10 years older than her, and Freddy is 7 years older (to the day!)  I often have thought how much harder our lives would be if Janey was our first or only child.  I can't tell you what a help the boys have been over the years.  Often it's just the little things, like when I have to run down and change laundry or check the mail---countless times, I've said "Can you keep an eye on Janey for a minute?" and they have stepped up to the plate.  As they've gotten older, if Tony and I want to get out and they are available, they are the only babysitters we use.  We do that very little, partly because they are busy and partly because we can't afford a lot of going out.  When we do have them babysit, we generally pay them, because watching her is certainly a payable job, but they often offer to watch her without pay for special occasions.  They joke with her, play with her, treat her in a brotherly way that is so important for her.  They are great boys.

Over the past few years, on several occasions, each boy has said the same thing to me separately.  They have both told me they truly feel Janey has normal or better intelligence---that for whatever reason, talking and communicating is hard for her, but that they very strongly feel that inside, she is bright.  I take their opinions on this very seriously.  They are not saying it from any position of wistful thinking or from lack of information.  They know Janey completely.  They see the full extent of what she is like---the screaming, the lack of academic progress, the limited talking---all of it.  But through it all, they see something else.  They have both seen amazing things she has done, those once a year type odd moments when she shows a glimpse of what she can do.  They have also seen the day to day demonstrations of her strong sides.  They have seen her learn songs instantly and sing them back, they have seen her figure out complex baffles we have put on things we don't want her to touch, they have watched her easily manipulate the computer and the TV.  And they also see the intangibles---just the way she can look at you, the way she picks up on the mood of a room, the way she subtly knows how to get what she needs from people.

I know a lot of people think I should have more faith that Janey is of normal intelligence.  I know very well that intelligence is not an easily measured thing, and that there are lots of kinds of intelligence, and that autistic kids don't take well to testing.  But I also fiercely need to live in reality.  Janey is nine.  She rarely talks in full sentences (except for echolalia).  She is not toilet trained.  She can write her first name, but nothing else consistently.  If she can read, she generally hides it well.  I have never seen her do even very basic math skills.  She rarely responds to questions.  By most any measure, she is intellectually disabled.  But IS she?  I don't know.  But I know that having her brothers feel she isn't is one of the factors I most strongly am influenced by.

Here's some pictures of Janey with her brothers, just being happy in their presence.  She's a lucky girl to have them, and I am a lucky mother to have all three.

An evaluation

Yesterday we took Janey for an evaluation at a local hospital.  :The road to this evaluation was long.  I had gotten a recommendation from an ABA supervisor at Janey's school.  We were looking for a team that would work well with the Boston schools and Janey's school in particular.  The previous evaluation we had for Janey through our health plan featured a strongly adversarial approach to the schools, with the words "catch them in a mistake and then we've got them" being used.  I really didn't like that.  I love Janey's school.  I am not ready to move her to another school.  I believe in inclusion.  So I wanted to work with professionals who accepted that and would go from there.  My pediatrician took a long time to give me the referral I needed for this evaluation.  I can understand that some.  He is committed to the team their own health network uses, which I think he was part of setting up.  And the hospital we went to yesterday is what was once known as the "city hospital", the hospital of the poor and uninsured.  It still is that, to some extent, but that is not what is important to me.  I wanted a place where public education was embraced, not seen as something to get out of however you could.  Anyway...a long introduction to how we ended up where we were.

Janey has been in a super good mood lately, and yesterday was no exception.  I could tell she was a little nervous being in a totally new place, but she loved all the elevator rides and was happy in the cheerful waiting room.  When we got called in, she eagerly went with us.  The evaluation was done by a developmental pediatrician and a 3rd year or maybe 4th year medical student---whichever is what is called a "fellow", although they were both women!  And they were great.  Right away I got a feeling that they got Janey and us.  They seemed to have a sixth sense about Janey, and saw that she was taking in a lot of what we were saying as we did some background talking.  So often, I find that professionals talk right in front of Janey about big issues, including things like residential care.  They seem to not realize how much more Janey understands than she lets one, but these doctors got it.  They had done a great deal of background reading of all sorts of documents we and the schools gave them, and so we didn't have to repeat a lot.

They started the evaluation with seeing how Janey's academic skills were.  As I would have guessed, Janey didn't show much of any of them.  :She identified a "B", but that was about all---she wouldn't count, or say any other letters, or show that she knew her name written down, or anything.  She was cheery, but not interested.  So they pretty quickly switched to non-verbal stuff.  Janey easily did a shape puzzle, and sorted circles of different sizes and colors into piles, and separated spoons from sticks.  She worked VERY hard at some nesting cups.  The doctor took them apart and asked Janey to put them back in the nesting pile, and Janey kept at it for about 5 minutes and finally did it!  I was impressed with her determination, although I know that's a skill that most 18 month olds can do with ease.  But Janey kept trying---she would get them in all except one, and the one was too big, so she'd take them back apart and try again, sometimes trying to put them in upside-down or trying to push them hard, but she finally got it!  She lost interest in the evaluation after about 15 minutes, and they let it end there.

During the testing, Janey was showing her personality a lot!  She sang bits of several songs, and she did a couple echolalia phrases.  One was from "The Goofy Movie", and said something like "That will create bonding between a father and a son!"  The doctor saw how it tied in a little to things we had been saying about our home life, and was impressed, I think.

After the testing, the doctor said that although the literature says it's possible to accurately test the intelligence of kids with low functioning autism, she doesn't really think it is.  They are not motivated to show what they know in order to impress anyone, and they only will participate if they are interested.  I agree about that.  She said she felt like she had gotten a good sense of who Janey was, and I think she did.  And then she said something that meant a great deal to me.  She said "You know, I really like Janey!  She's a great kid!"  She said it in such a way that it didn't seem like a line, like something she said to everyone.  She said it like she had seen what we see, what people at her school see, that she is a pretty cool girl, an interesting person.  That is what was noticeably absent at other evaluations and medical appointments Janey has had---the sense that she was seen as a person, as a cool person, not just as a case to be figured out or a problem to solve.  I felt like hugging the doctor.

We got back next week to get the feedback about the evaluation (without Janey there).  I am eager for that.  I know basically how Janey stands---I'm not going to be shocked by anything I hear, but the big thing I was going for with switching to this team is having someone to work with for the long haul.  They said at the end of the appointment that they want to follow Janey as she grows up, to help us get the help we need.  And the doctor summed up in a few words what is is we want for help.  We want to be able to have Janey happy, to be able to enjoy her and have her enjoy life, to be able to have a home life that is happy for her AND for us.  That is exactly what we want.  We are not aiming for Janey to learn academics much.  We aren't aiming for her to be able to live on her own, or hold a job, or achieve amazing breakthroughs.  We want her to be happy, to enjoy life, to be a full part of our family.  That seems so simple, but it's so helpful to have pinned down just what we need help with.  And I feel some optimism that with this team and her school and our family working together, we can achieve that happy balance.

What Made Janey Autistic #3 in a series

From as early back as I can remember, for some reason, I've been fascinated with genetics.  I've read everything I can find about it.  My sister shares this interest, and we actually used to pretend that our dolls suffered from a rare genetic disease we called Ingalls' Syndrome (I think we were into Laura Ingalls Wilder at the time).  It has symptoms that made dolls, well, doll-like---floppy and not too good at walking on their own.  My sister Carrie came close to going into genetic counselling, and I've kept up my interest through reading over the years.

Genetics, however, when it comes in the form of possibly genetic-linked traits, is not quite as thrilling when it happens to  your family.  But it's certainly a possibility for a cause for Janey's autism.  And a delicate subject.  I'm not going to list family members on both sides with oddities that might be somewhat autism-related, but suffice to say they exist, for sure.  Nobody has full blown autism, but both sides of the family tree are peppered with quirky people.  It's certainly possible that some genes came together that were enough to give Janey autism, or more likely put her in a vulnerable state where getting autism was more likely.

I've always wondered if it's possible Janey has some genetic disease that hasn't been identified, maybe a mild version of one or a mosaic version.  She has a few physical soft markers, little oddities.  One is her toes---the 2nd and 3rd toe overlap, and they are slightly conjoined---not connected, but they seem to share a common root.  She has angel bite type birthmarks when she was a baby that still show up when she cries hard.  A pediatrician at the clinic that diagnosed her said her heart was in an odd position--she even said she thought it might be on the wrong side, but my pediatrician said at most it's more in the middle of the chest than most people's hearts.  She had the late walking, but that's fairly common in autism.  And there was the one MRI way back that showed she had some white matter in her brain where it was supposed to be gray matter, some little dots of it I guess.  But a further MRI didn't show that.  So little things, which of course I've Googled to see if they fit into any pattern, and haven't found one, as of yet.

I do believe that genetics are a huge force in making us what we are, more than most people think or like to think.  I'm fairly sure that genetics have something to do with Janey's autism.  It's another component, along with the first two parts in this series.  When gene analysis gets even better, I might see if a geneticist can have a look at her genes, but at this point, the genetics of autism isn't at an advanced enough point to make that worth it, I don't think.  Until then, I'll call genetics a strong maybe as a cause.

Evaluating Janey

I'm taking a break from my series about all the possible ways Janey became autistic to write about yesterday.  We had a meeting with what our health plan calls Developmental Consultation Services.  In essence, it was a meeting with a developmental pediatrician.  We had sent her a lot of information about Janey---old IEPs and other evaluations, medical records, etc, and I filled out lots of forms about her.  I had talked to a social worker on the phone about what I felt I most wanted from the service.  I told them I wanted an accurate read on Janey's measurable intelligence.  I feel like that's something I haven't been able to get.  I know she has scattered skills, highs and lows, but I'd like to know where she stands based on regular testing, because I'd like to get an idea of what she is capable of, so I can best plan what kind of education would be best for her.  I don't want her spending years and years trying to learn letters or shapes or colors she can't learn, while she could be learning more practical things, or enjoying the things in life she IS good at.  The doctor was very nice and competent seeming, but explained that she wasn't fully qualified to do testing like that, but she'd do a little testing to help me get an idea.  She did two types of tests with Janey---one where Janey had to point at one of four pictures to answer questions, like "Which bowl is full?" or "Which animal is big?" or "Where the triangle?"  The other was a test of skills like building a block tower or stringing beads.

Janey co-operated fairly well for the first part.  She was engaged, she echoed everything that was asked and she pointed to a picture in every case---not always really trying, I don't think, but doing what she thought she was being asked to.  She did better in some parts that I would have guessed, but not as well in other parts.  I have no idea how it will be scored (we go back in 2 weeks to hear about that) but it was interesting to watch.  She was less engaged by the part that required fine motor skills, which surprised the tester.  She noticed that Janey is more verbally oriented than you would guess for a girl that doesn't talk much, and remarked that is a bit unusual for an autistic child.  It's the whole "She's supposed to think in pictures, but she thinks in words" bit.

A few things bugged me.  One was that the testing book they used for the first part was spiral bound, and the spiral was half off the binding, creating an enticing Slinky-looking toy in Janey's eyes.  She couldn't keep her hands off it, and that interfered with the testing.  I can't understand why someone that tests autistic kids wouldn't realize that would be a problem and fix it.  It wasted time and Janey's attention constantly reminding her not to touch it.  Another was the stupid toys in the office, that were supposed to engage Janey while we talked.  They were not suitable for kids with special needs.  How hard would it be to get babyproof type toys for the toy box, since you are going to be dealing with kids that probably mouth toys?   But that's just a little blog ranting!

In talking to the pediatrician, I got the feeling she was not a huge fan of inclusion or of Janey's school, which she has visited.  She said she felt often that separate classrooms better served kids like Janey, with significant needs.  That is something that might be true from a strictly academic viewpoint, and I tried to explain to her that that is one of the reasons I want to know what Janey is capable of.  Truthfully, regardless of that, I would not move Janey to another school for almost any reason.  It's partly for the same reason I picked schools for my boys, but even more so for Janey.  Janey is happy at school.  She is loved there.  Although I know that with autism, there is supposed to be a sense of urgency about the early years, and I shouldn't think this way, but I think the main goal of elementary school is to have kids learn to be around people, learn to trust adults, learn to interact with others, and start, just start, learning academics.  There is a lifetime for serious work, and believe me, once kids ("regular" kids like the boys) are in high school, there is PLENTY of hard work, far more than I ever had.  For someone like Janey, who is not going to have a career, barring miracles, I find it even less important that she be learning as much as possible every moment.  I am going to start worrying more about that when she is in 6th grade or so.

The other reason I'd not consider a change is how Janey reacted to missing a day of school, which she hardly ever does.  She DID NOT take it well.  Last night was the worst night in probably 2 years.  She was hysterical, completely overcome with screaming and crying and fury.  She woke at 3, still very upset.  She understood---William and Freddy are at school, but I'm not.  I of course tried to prepare her, to talk to her, but her worry and fury is not verbalized or able to be helped by talk.  It's the routine.  For all she knows, we are never going to school again when we don't go for a day.  And that is NOT RIGHT, in her eyes.  I'm going to try hard not to ever schedule an appointment during a school day again.

Overall, yesterday did something interesting for me.  It made me realize I am getting more confident about my knowledge of Janey and my vision of what I want her world to be like.  I'm able to say more definitively what I want for her and don't want.  I am less swayed by "experts", even kind and knowledgable experts like the doctor yesterday.  It was an interesting day in that way.

Long Week

The last week was fairly tough. Janey was having a bad week---awake in the night crying, not talking much, upset all the time. Things weren't going well at school either. Finally Friday I kept her home, just to give the teachers a break and to let her do nothing all day. It seemed to break the cycle a little. The school called mid-day, actually the woman who is her ETF, to talk about how she was doing. They all had been concerned about her mood swings, and I had finally mentioned something about it in a note to school, and now they all wanted me to call Dr. Marshall, her pediatrician, to ask him about having her evaluated for bipolar disorder or manic-depression. I did call him, although it was a hard call to make, and I have numbers to call tomorrow of two psychiatrists. I have thought deep inside for a while she might have something like that, but it's along with the autism and the retardation, so it's going to be hard to diagnose and treat if she does, and I am still not feeling very up on medication, which confuses everyone as I've always been someone that believed in medication. But Janey is only 5, and I have had some bad experiences with drugs I felt were carelessly prescribed, including the Aldomet during my pregnancy which I truly feel is the cause of many of Janey's issues, if I might be totally honest. Also Freddy's racing heart and possible drug induced Long Q-T syndrome after his bad asthma attack. So I am not going to trust a doctor on medication unless I really look into it quite a bit first. And I also don't know how it can really be separated---does she get upset because she can't explain what's wrong? Can she not explain what's wrong because she's upset? I feel sometimes like people want other people on medication because it's a way to feel like something is being done, and if you don't do it, they can kind of say to themselves---"Well, she won't let them give her medication, so she has only herself to blame if Janey is that tough"---which is hard on people, but as I've said lots of times, here is the only place I pour out my heart about autism issues.

Then yesterday we got a Fex-Exed report from the Mass General study we have been in, about Janey's testing. Talk about a downer. Pretty much, she tested as low as you can test on almost every aspect they tested--- less than the 1st percentile. I think they were using a test for "normal" kids her age, and it really couldn't even test her, she was too low functioning. Even areas like her receptive language that I had thought she did fairly well on, she really didn't. It was a little bit of an eyeopener. It is making me think we need to rethink how she is being taught and what our goals should be. I am starting to think her learning things like colors and numbers and so on is not really a realistic goal. I've thought for a while that her speech is a little deceptive---because she does talk, but mostly in set phrases and delayed echolalia, people think she has more potential than she actually does. I think she talks as much as she does because we are all huge talkers, and that is where she gets constant stimulation---verbal areas. If it weren't for the residual speech she has, I think she would be seen more realisticly---as a child that probably is moderately retarded and needs to mostly learn life skills. And I think she could do well learning those, and perhaps someday some very basic academic skills.

I am facing the things that are toughest for me---being sure of my own convictions and not being swayed by the disapproval of others of the routes I might choose to take with Janey. I know that I know her better than anyone, I love her more than anyone except Tony, and I want what is best for her. So why is it so hard for me to just be sure of myself in terms of what I choose to do with her? No-one else lives with her day and night. If I ever have enough belief to say prayers, it will be prayers for the courage of my convictions.

Not being positive

Not a good past few days, awful really. Janey and Freddy have both been sick. Janey seems better, but is incredibly fussy all day long. Yesterday she pretty much cried all day. I was at MGH for the autism study I enrolled in, doing testing, and she was with Tony. He didn't take her to school as she was just screaming and crying at that point in the day. She fell asleep for him and slept all afternoon. Never happens to me. I am more worried about Freddy. He missed the last 3 days last week, went back yesterday but it wore him out to the extent he can barely move. He is so pale it's very scary. He will probably stay home today and I will take him back to the doctors. There are days like yesterday I feel like I can barely make it another minute. This winter has been so hard. Janey is so tough so much of the time, and I feel like I can't be with the boys like I should, and Tony's hours are so long and he's so tired or pre-occupied when he is home. The house is turning into a pit of mess, we are financially practically going under and I have just not been happy for a long time. I try hard to stay positive but I am not positive and I can't see when I will get positive.