The Cycling Life

 Janey turned 18 last month.  I would have pictured myself writing a post about that, talking about her becoming an adult, reflecting on her childhood.  I found myself unable to do that.

It hit me today what made it so hard for me to write about the milestone in Janey's life.  It's the lack of forward motion in her life, and ours.  Janey changes, all the time, but the changes are cycles, for the most part.  There are many Janey modes---very happy Janey, talkative Janey, sleepy Janey, crying Janey, quiet content Janey, no-sleep Janey, manic Janey---and there have been, right along, since the regression and start of her autism, when she turned three.  Days today, with the exception of her being older and bigger, could be days when she was 3, or 7, or 12, or 15.

I'm sure some who know Janey will say, and probably rightfully so to some extent, that that isn't true, that she's made progress. And who is to say what progress is?  But at a very basic level, she hasn't.  I think we've learned about her more, we understand her more, we know so very well what makes her tick, how to best respond to her varying states, how to keep her happy more of the time than not.  But progress?  I'm really not sure there has been much of that.

Does it matter?  In some ways, no.  We aren't holding Janey up to some standard that just doesn't work for her.  We aren't working toward a goal that will never happen.  She won't hold a meaningful job, she won't live on her own, she won't get married or have children, she won't drive a car or read books or go to college.  Much of progress is working toward goals.  The kids she started school with are going to college now, preparing for careers, maybe meeting their future spouses.  The progress they have made over the years has led them to this point.  I don't think it was ever in the cards that progress Janey made would do the same---so does progress matter?

The last few days have been in the mode of one of Janey's toughest personas.  She is not sleeping, she is crying half the time, she is pacing and volatile and demanding.  But we know it won't last.  She will pass into another mode---maybe the sleeping all the time mode, or the cheerful but quiet mode, or the rare very talkative and happy mode.  That's the flip side of cycling rather than progress.  Progress, if you think of it as permanent change, could mean that tough behaviors will never go away, and we have learned that with Janey, if you wait it out, they do, at least for a while.

I think why it's hard for me to admit to myself, why a 18th birthday sum-up was something I couldn't write, is because in some ways, we as autism parents are sold a false bill of goods.  I don't think anyone is doing this on purpose.  It's more how we are as a society, and so maybe it's automatically the standard we apply to kids with autism.  We believe that with the right education, the right attitude, the right therapies, the right parenting, the right foods, the right medical care, the right everything, our kids will progress.  We tell that to new parents with autism. And for some kids, it happens, and they attach a causation.  They assume the progress is because they did the right things.  But I'm here to say---that might not be the case.  You can do everything right, and your child might still not be toilet trained at age 18.  They might not read.  They might not talk any more than they did as a toddler.  They might not be able to do basic tasks of adulthood like walk to a store by themselves and buy something.  On the other hand, you might do nothing that is supposedly the right thing to do.  You might be the most hands off autism parent in the world, and your child might undergo a total "cure".  I honestly, truthfully have come to believe that's the nature of the autism beast.  There's a natural history of each person with autism, one we have very little control over.

So---what's the deal here?  Today, because of lack of sleep and days of trying to keep Janey from crying, I feel pretty down.  But overall, I don't think the message is totally a negative one.  I think it's one of acceptance, acceptance that goes beyond the lip service sometimes given acceptance.  Janey is amazing.  She's one of the coolest people in the world, one of the most interesting people, one of the most fun people.  She makes me proud every day.  And that isn't because of progress.  It's because of who she is and always has been.  That doesn't mean life with her is easy, or that we don't need a lot, lot more help that we usually can get.  It means we value her for being her, not for meeting goals or checking off milestone boxes.  

Happy birthday, Janey.  Welcome to adulthood.  It might not look like most people's adulthood, but it's just as valid, and valuable, and we celebrate the memory of your childhood and look forward to knowing you as an adult.

Growing Up Fears

The other day, I glanced at Janey asleep on her bed and had the thought I think every parent has at one point---I thought "Who is that?"  She looked so big that for a minute I didn't recognize her.  Janey is growing up fast.  She is outgrowing her clothes like crazy, she now wears a woman's size 7 1/2 shoe (we all have big feet!) and after always looking younger than her age, suddenly she looks older than her age.  That is something that seems to run in my family---early maturation followed by ending up not very tall!  I am proud of my girl growing up, but I am also scared.

The world isn't as kind to autistic teens and adults as it is to autistic children.  This isn't something planned, but it's the truth.  I fight it very much myself, when I see an adult acting obviously oddly.  I tell myself "That is Janey some day" but there is something instinctive that makes me uneasy, that puts up a little guard.  I hate this about myself, but I have to be honest.  We expect kids to act in unpredictable ways, but when adults do, it takes a minute to see that they have special needs.  Here's another post by the mother of an autistic girl that tells of these worries very well----link here.

There is also the deadline that hovers over all of us in the alternative world of fairly severe special needs---age 22.  The schools will educate Janey until she is 22.  Then, she is an adult, and there is no more requirement by anyone to educate her.  I hope very much there will be programs in place for her at that point, but it's not a certainty.

These things combine to make me wish time would slow down.  Janey getting older isn't going to lead to the milestones we dream of for our kids---college, marriage, a job, kids of their own.  Janey getting older means for a large part the same Janey, but in a bigger body.  That must be incredibly frustrating for her, to the extent she understands it.  When I think about that, I can understand her screaming.

Of course, there is small ways in which Janey does get more mature, and I love seeing them.  Yesterday after school we went to the ice cream store, the neighborhood market.  It's just a very short way from our house, and Janey was impatient with my slow walking.  I made her stay next to me most of the way, but on the way home, I told her once we were just in front of houses that she could go ahead.  She ran to our driveway, and then turned and came back to me.  I told her she could go down the driveway by herself, and she ran and did that.  I thought about how just a year ago, I would not have dreamt of letting her run ahead of me, and I felt proud of her.  She is progressing in little ways all the time.

In thinking about Janey's future, I wonder if we are preparing her for it in the right way.  I think about what she learns at school.  School is set up for a future that it's unlikely Janey will ever have.  She is learning things that are meant as foundations of reading and writing and as an ultimate goal, a career or college.  She doesn't learn these things easily, or at all.  I wonder sometimes if her time would be better spent learning other things---how to prepare simple meals, how to do small house chores, and very importantly, how to enjoy the things she can enjoy---running, music, swimming and things like that. More and more, time spent trying to get Janey to say letters or count objects seems a bit wasted.  But when she learned how to throw away her own pull-up, how to put her clothes in the hamper, how to pour herself a glass of water---those things made her life and our life and her life happier and easier.  I picture a goal of her someday maybe walking to the ice cream store on her own.  We would watch her go, maybe trail her, but I picture her going in, picking out the ice cream, taking it to the counter and giving them money.  The workers there are so kind to her---we could prepare them ahead of time for her visit.  And she could walk home on her own.  That is a goal I would love to aim for, maybe 5 or 10 years from now.  It might seem like a little thing, but working toward that might make more sense than working toward reading.

The next big step our society is going to have to prepare for is all the current child with autism no longer being children.  We need to think seriously about what we would like their lives to look like, what THEY would like their lives to look like.  That is what I am going to start doing with Janey.  I think she has a chance at a happy life.  It's not going to be the life that most people lead, but I can see it being a life that has its own meaning and joy.  That is, I can on hopeful days.  On discouraged days, I am terrified of that future.

Observations on a School Visit

I went today to observe a program within our school district, what is called an "autism strand".  It's a section within a larger school that is a collection of classrooms for children with autism only.  Janey currently attends an inclusion school---she is in a classroom with kids with no disabilities, kids with mild disabilities and a few other kids with more severe disabilities like her.  I'm very happy with Janey's school, but to be able to be sure it's where I think she will be best served, I felt it was fair to see what another program was like.

My conclusion?  I still feel Janey is best where she is.  That's not to say I didn't see a lot good in the autism program.  I did.  The two main teachers I saw at work seemed great.  They were enthusiastic, engaged, praised the kids a lot and seemed to be getting the kids to work well.  The rooms I saw had about 8 kids apiece.  There were lots and lots of other people in the rooms besides the main teacher---paraprofessionals, speech and OT therapists, ABA therapists and others.  The kids were busy and for the most part seemed happy.  There were a few behavior incidents while I was there, but they were handled well.  Overall, most the kids seemed to be working at a higher level than Janey does (some were doing work with compound words, others with plurals, for example) but a few kids were working one-on-one with adults and they might have been working more at Janey's level.  The school goes up to 8th grade, and currently does have an afterschool component built in, although the funding for that might be gone next year.

Why don't I want Janey moved?  Well, there are several reasons.  One is that I believe in inclusion, wholeheartedly.  I don't think the best way to educate Janey is in a classroom with only other autistic kids.  I know not everyone agrees with me there, and I respect that.  But I have seen inclusion at work for many years now, from both the perspective of a special needs parent and a regular ed parent, and it works.  It works for both special needs children and regular ed children.  It's no coincidence that Janey's current school scores the highest in the city on many measures (out of MANY elementary schools)---inclusion helps everyone learn.  And Janey learns from her peers.  She is a mimic.  She picks up on every sound around her.  One child that was upset at the autism school made a low screaming noise for a long time.  The kids didn't seem bothered, and I wasn't bothered either, but Janey, whether bothered or not, would pick that up.  She would imitate it. And I'm not saying it's wrong to make that sound, but the goal with Janey is to maximize communication, and I think that is best done by being around children that communicate effectively.

Another reason?  If a school placement is working, why change it?  Janey has had a few tough periods this year, but that's been true of every year and, most likely, will be true of every year.  Overall, however, and this is backed by hard data, she has made progress.  More importantly, for the most part, she has been happy.  Lately, especially, she is truly loving school.  She loves the before school exercise program (which I don't think would work with only autistic kids---it works to include her, because she has many, many models to follow that are following directions), she loves the after-school crafts programs, she loves her student teachers, and she loves (and I love) her special ed and regular ed teachers.  She has wonderful classmates.  Her school has just been approved for a K-12 pathway.  It seems to me like a crazy time to move her away from it.

The last reason is just my gut.  I didn't feel as good about the autism school as Janey's current school.  I'm sure part of that is that I know so many people at Janey's school.  I know she is safe there, and loved.  That is worth a huge amount to me.  But additionally, I like the school physically.  It's clean, it's orderly, it's well-run, it has a great principal---it's just a nice place to be.  The autism school looked shabby, in many ways.  That's a picky sounding thing to say, but it's also something that I think any parent of a regular ed. child would look at.  You want your child in a school that looks cared for, that feels calm and loving.  You want a feeling about your school you can't quite put into words, but you can feel.  I want Janey to stay at a place I feel in my heart is the right place.

Some day, things might change.  But for now, I saw nothing at the autism school that couldn't be provided to Janey just as well where she is, without having to move her.  I am very glad the autism school is there.  It seems like a place that serves the children that go there very well, and I know if I didn't have other choices and Janey did go there, she would be cared for well.  But I do have another choice, and I am very lucky to have it.

Autism Friendly Day instead of Autism Awareness Day

The big exciting holiday of the year for autism families is coming up in just two days!  Yes, indeed, it's Autism Awareness Day!  I just can't wait, because that will be such a fun day for Janey and all of us---yes---all those great activities for autistic kids and their families!  What?  What's that you say?  There are really not any exciting fun times for autistic kids on that day?  What the heck?  It's just somehow a day named for autism, where for some reason you are supposed to "light it up blue"?  How is that going to help anyone?  And who isn't aware of autism these days?  Is this a day to reach out to the 1 or 2 percent of the population who for some reason has never heard of autism?

Now, of course I'm just being a little nasty.  I am glad there's an autism awareness day, and I plan to write a post about it on the day and be more with the program.  But lately, I've been thinking about what I'd like better than a day to make people aware of autism.  I'd like something I would call an "Autism Friendly Day"

Here's my dream for that day.  All restaurants, stores, recreational establishments and more would be encouraged to participate, which would mean they would set aside that one day to do what they could be be autism friendly.  Restaurants could have a night where families with an autistic child could eat out, in an environment friendly to a little bit of strange noisemaking, random tantrums and odd food choices.  The wait staff could get a quick training ahead of time about what to expect.  I would guess it would actually make the restaurants some good money on an otherwise normal Tuesday, because a lot of families with autistic kids would love to eat out with them, but don't want to have to worry about other diners being annoyed by their children.  Stores could have a special time set aside to actually shop with your autistic child, without people staring or being nasty if your kid hates shopping and throws a crying fit while you are desperately trying to try shoes or clothes on them---and maybe other shoppers could refrain from staring or saying your child seems tired and should go home.  Places like mini-golf or arcades or indoor gyms could take one day out of 365 to cater especially to autistic kids.

While I'm dreaming, maybe schools and churches and community centers could get in on this.  I am extremely lucky Janey goes to a school where she is always included, but not every child is that lucky.  Maybe for that day, the separate autism classes could join the regular classes, and the "regular" kids could learn about autism, and meet some fascinating kids with autism they would otherwise not know.  The Sunday closest to Autism Friendly Day could be a day for churches to welcome families affected by autism.  That would be wonderful---our family could try a church together, something we have not been able to do since Janey's regression.  Community centers could open to kids with autism for recreation---they could have some classes or open gyms set up.

I think this day would do a lot more to raise autism awareness than the current setup.  Nothing makes you aware of autism like actually spending time with a child with autism, or an adult with autism.  You can't learn about autism solely by reading about it.  And becoming more aware of what autism actually is would benefit everyone.  Businesses and churches and restaurants would benefit tremendously if they reached out to families that have simply stopped using their services due to their autistic child.  The general public would learn what the real needs are of families affected by autism, and the fear of the unknown that I am sure often keeps people from getting to know our kids would be reduced.

Best of us, this day would actually be a fun day for families like ours.  It would be a treat, in a life that often is stressful and tiring and isolating.  It's a dream, but I think it could easily be reality, without a great deal of cost or bureaucracy.  I'd love it.

Playing to Strengths

I went last night to hear a speaker at my younger son's school, Michael Thompson.  He has written quite a few books about child development and school issues.  His talk didn't tie in much to autism issues, but it was very well done and gave me some good insights into the boys.  However, one thing he said really struck me. He said something along of the lines of "No-one specializes as an adult in the area that they need childhood special assistance with"  He meant it mainly in relation to kids with learning disabilities, like dyslexia, but it seemed to me to be very relevant to autism education.  Very few kids with autism will ever have a career in an area requiring great interpersonal skills.  Janey probably isn't going to have any career, but in terms of what she will enjoy and have as a hobby as an adult, I doubt it's going to be in the areas she has the most difficulty with.  She still needs to learn in those areas.  It will be very helpful in her life if she knows how to greet people and to say goodbye to them, to write and recognize her name, to maybe even some day understand money just a little.  But she's not going to be doing greeting or writing as a hobby.  Thinking of higher functioning kids, there are many that have great areas of strength---perhaps math, or geography, or even something like knowing public transit maps by heart.  However, the way the education system is set up, we work far more on the areas that are tough for a kid than the areas that are easy or enjoyable for them.  I don't think this is avoidable at the elementary school level.  Janey and other kids do need to learn some basics.  But I'm thinking about what I'd like Janey's education to look like when she is in junior high or high school---how I can work on her strengths and not spend much time on areas that are not going to be a big part of her later life.

Right now, the biggest strength I think Janey has is in her love and appreciation of music.  Anyone who is around Janey for any amount of time knows that she responds to music like little else.  She memorizes songs, both melody and lyrics, very easily, and she remembers songs forever.  She is discriminatory in her tastes---she doesn't just like everything she hears.  She's very partial to bluegrass and country gospel music, and to certain songs within that genre.  This week, she's gotten into a song called "Uncle Pen" by Ricky Scaggs, and I have heard it in the car at least 30 times, because no matter what else I try to play, she asks for it again.  It's got a complex sound, and a strong beat, and she adores it.  I don't know if Janey would ever be able to learn to play music herself, but I want her to be able to access music easily, which with today's technology, is quite easy.  I want her to maybe learn the names of types of music, and to learn musical terms, and to just take her love of music as far as it will go.

I think we have long put a lot of store in this country in a well-rounded education.  Everyone learns a little of everything.  That model needs to be looked at.  Not everyone needs to learn everything.  I would guess that if we let kids, all kids, pursue their strengths more, we'd be better off as a nation.  The time spent teaching a kid who has no interest in or aptitude for math algebra is time that could be far better used letting that child pursue what they are good and love to do.  Or if the child adores algebra and is great at it, don't require them to spend large parts of their day engaged in learning something they will never master and will never enjoy.  I'm going to try to keep this lesson in mind when looking at Janey's education after she finishes elementary school.

Dealing with autism---Four styles

I've been doing a lot of reading of autism blogs and books and articles lately, and I've been struck with the differing ways that parents deal with a child's autism. It seems to me there are four basic ways, and of course, lucky you, I'm going to break down what they are!

Before doing so, I do want to say that I don't think any one way is the right way. I can't stand the polarization in the autism community. Let's face it, autism is tough, and any way you choose to deal with it that doesn't hurt your child is your business. I can't possibly judge others, lest I be judged!

Here's my breakdown....

1. Fixing autism the medical way

This is the group that feels autism is a medical, biological disorder, caused by outside forces, and that is can be treated medically. There are a huge amount of subgroups here, but the common thing is a feeling that the child was not born to be autistic, that something caused the autism. This is the vaccine/mercury/ultrasounds/pollution/diet group. I think this group, overall, tends to be people that have led a fairly smooth life up until autism showed its face. They did not ever expect to have a disabled child, and they are going to do everything in their power to fix the child. In many cases, they have a fairly good income, as many of the treatments cost a huge amount. I would guess there are families that would like to go this route, but know the rest of the family would be left dumpster-diving for food once the bills were paid for the various treatments.

2. Fixing autism the educational way

This group is the big ABA group. They believe strongly in education, and provable progress. They get their children diagnosed early, as they are readers and are alert to the signs of autism, and they get them early into ABA programs, the best autism programs at schools and the most educational out of school programs. They devote unbelievable amounts of times to their children. I think these tend to be the highly educated parents, and ones that would also have devoted themselves wholeheartedly to the education of a non-autistic child. They write the books that end with a epilogue about their child going to a new school, where no-one knows they were diagnosed as autistic, and fitting in like any other child, except probably smarter.

3. Accepting the child's autism and expecting the rest of the world to also

This group wholeheartedly embraces their child's differences. They are the autism acceptance people. They think their child is perfect just the way they are, and the rest of the world needs to accept them as they are. I think this group is often parents that are a little on the spectrum themselves, and had a tough childhood because of it, and are determined that their children have a good childhood. They are the fighters for inclusion.

4. Accepting the child's autism but knowing the rest of the world might not

This group probably looks like slackers to the other groups. They accept their children the way they are, but do what they can to make the child better able to interact with a "normal" world. They might try a little of each of the other groups approaches here and there, but they are not do or die type people. They probably have other children, and might take a fairly relaxed view about a lot of things. Autism is not the focus of their life, although they adore their autistic child.


I would probably fall most into group 4, although I have a bit of 2 and 3 in me also, and I have utmost respect for the group 1 types. Every group has something to offer to the autism world. I don't think you can really choose which group you want to be in. Your personality, your background, your beliefs and world view----all combine to make you what you are. That's why it's crazy to fight. We all love our kids, we all want the best for them. We will all benefit from a world that understands autism better.

Janey's school

Here's a link to a PBS Newshour segment about Janey's school...

I'm hoping the link works this time---I'm having a huge amount of trouble figuring out how to make text into a link!

Okay---I tested it and it finally seems to work!!! After only about an hour of fooling around trying to figure out how to do it...

I loved this segment. Janey doesn't appear in it, but so many other kids and teachers I care a lot about do. It was making me reflect, as I often do, how incredibly lucky we are that Janey goes to the Henderson School. It was also making me feel sad for all the many, many, many kids like Janey that doesn't get a great education. It's not fair. Every school in the world should be a good school. As the segment mentions, inclusion doesn't cost more than non-inclusion. And it's not even just inclusion that's the issue. I know there are great classrooms for kids with autism out there that are not inclusion classrooms, but as is the case with inclusion classrooms, not enough of them.

But just personally, we are so lucky. Janey didn't have a diagnosis when she started at the Henderson. She was just a sibling of Freddy. When she was diagnosed, we didn't have to move her, we didn't have to fight for services, we didn't have to send her to a school we weren't familiar with. We were able to keep her right where she was, with teachers and staff I'd known for 8 years at that point. She is getting the best education she possibly could, and is cared for and loved and appreciated. I will never, never take that for granted.

Why is autism so polarizing?

This morning I was trying to look up methods of teaching autistic kids to read. It was so frustrating, as everything that I found was connected to one fanatical school of thought or another---how to teach using ABA, how to teach while eating a special diet (what does that have to do with reading?), how to teach through floor time...what if you just want to teach them to read, and you don't follow one of the strict regiments? Then I thought of looking at homeschooling autistic kids, not that I am thinking of that---with Janey's love to school, that would be cruel! All I could find about that was other fanatic sites about how much better homeschooling is, and how your child being autistic shouldn't keep you from homeschooling and how the system tries to force you to send your kids to school---nothing about HOW TO TEACH THEM. There must be research or methods out there of teaching a child with autism things like colors and shapes and numbers. Or I am starting to wonder---is there? Is everyone so focused on "curing" the autism and getting credit for that, that no-one just accepts---okay, they are autistic, and now how can we help them learn what they need to know? That is how I feel. I don't think Janey is going to suddenly become non-autistic. I've accepted that. So where do we go from here? How do I help her learn? Is anyone going to help her learn?