Sunday, May 22, 2016

Your child was newly diagnosed with autism? Maybe don't read this...

For some reason, I started looking today at various fact and advice sites for those with a child newly diagnosed with autism.  It was strange---although it's been 8 years, I still felt panicky reading the information there, feeling like I wasn't up to the challenge and I was going to do everything wrong.  It took me back, and in a bad way.  So I thought---what would I say?  What would I advice?  And then realized what I'd have to say might not be the best thing for someone to read that was new at all of this.  Maybe the busy lists, the lists of tons of people to call or books to read or therapies to research are the best way to handle the early days.  Maybe it's better not to think too much, and rather to take action.  But here's what I'd say, and if you really are in the early days of a diagnosis, think twice before you read this, because I'm going to be brutally honest with my five talking points.  Not brutally negative, but brutally honest.

1.  There is no way to say right now how this will all play out. Your child might be one of the super-achievers.  There might be a day, years from now, that they pull down all As from a fancy college while carrying a part time job and having good friends.  Or...they might never progress much at all.  They might even regress some.  They might never learn much more than they have learned right now.  I had one of each of those.  The very high achieving child was probably misdiagnosed, but then again, maybe your child was too, or maybe mine wasn't, and was just someone destined to progress.  Don't let anyone tell you what your child will do, although knowing that you don't know is a mixed blessing.  I read a book once about girls with autism that said something along the lines of "Girls with autism have an incredibly bright future ahead!"  That line makes me mad every time I think of it, because for many girls (and boys), it's a lie.

2.  Your life is not going to be what you expected.  I'm not going all trip to Holland here.  It's not going to necessarily be better than you expected, but then again, it might be not worse.  It's just not going to be the life you pictured.  No life ever is, but yours...more than most.  You will live a life of IEP meetings and meltdowns and special interests and sleepless nights and desperation and pride and laughing and crying.  Not all at once, and not all of those maybe, but you'll have highs and lows higher and lower than most.  You've been taken off the mainstream track and moved to a different one, one that isn't going to take you where you expected.

3.  Everyone will tell you that you are going to have to be an advocate for your child.  Don't let that terrify you.  It will come naturally.  Not everything has to be a fight.  You will be pleasantly surprised how many people truly want to help you, and are kind beyond anything they need to be.  If you don't feel up to a battle over some issue, it might be that issue isn't worth battling over.  I am the least confrontational person I know, pretty much, but even I find when the issue is important enough, I can do quite a battle, and you will too.  The one area I do want to say you MUST ALWAYS SPEAK UP is for medical issues.  If you KNOW your child is very sick, and they aren't getting the treatment they need because they can't communicate well, SCREAM if you have to.  Your child's life may depend on it, as Janey's life did with her appendix crisis.

4.  Figure out a way, some way, to enjoy yourself even if you can't leave the house.  Because a lot of times, you aren't going to be able to.  Finding respite is near impossible, at least in the United States.  So you might need to mentally escape when you can't physically escape.  Get into something like online games or gardening or knitting or sewing or working out to music or whatever floats your boat, but make it something you can pick up and do whenever you have a moment.

5.  Enjoy the good moments with your child when you can.  There are going to be very tough times, but believe me, there's going to be a lot of fun, too.  There's going to be times your child does something you never thought they could, or says something incredibly funny (whatever way they communicate) or gets so into a song or a video or a book they laugh so hard and dance so hard that you can't even help but laugh and dance along.  Don't feel like you have to have "normal" fun to have fun.  Don't ever feel like the things that delight your child should have to be "typical".  Typical is overrated.

I said five things, but here's a sixth.  It gets easier.  It really does.  It might get tougher before it gets easier, and it might swing back to tough for periods of time after it gets easier, but there is going to come a day when life feels under control again.  When the nights are very, very long, when you have been bitten and hit, when you are cleaning up a diaper mess for the hundredth time, when you want to fling something at the TV when they say it's a snow day, when you despair----please remember it does get easier, and feel free to post a cry for support on the Facebook page that goes with this blog.  We have all been there.  We have your back.  I am thinking of you, about to start on this journey, and I send my love.

Tuesday, May 17, 2016

Thinking about my sons

My boys are home from college.  I guess it would be more accurate to say my men are home from college, as they are both really adults now, but they will always be my boys.

They both aren't working this week, and Janey is in school still, so I'm getting a rare treat, time with them both, without schoolwork looming over them.  It's great.  But it's also making me think a lot about how Janey has affected them.

In some ways, because they are both so much older than Janey (7 and 10 years older), it hasn't been the typical situation for siblings for a child with autism.  I can't even quite wrap my mind around how it would have been if they all were close in age, although I know many of you have that setup.  Because they are older, I'd say it's been easier on us as parents, but maybe, perhaps, actually tougher on them as siblings.

From the time Janey's tough behaviors really started, when she was around 3, in many ways, the boys have been on their own.  Of course, not totally, but so often, we were simply not able to do things as parents for them that most parents would do.  We missed school events, we were unable to help much with homework, we couldn't go on family vacations or eat out or actually do very much as a whole family at all.  We used a lot of "divide and conquer".  One of us would care for Janey, the other would go to the play or do the drive to a friend's house or sneak out for a birthday meal.  The boys almost never got both of us at once.

Way too often, I read cheery, almost flip accounts of how having an autistic siblings helps kids.  They are supposedly more compassionate, more caring, somehow bettered.  That might very well be the case.  I am very, very proud of my boys.  They are fine young men.  But I don't think this is because of Janey's autism.  That doesn't seem like a fair burden to put on either Janey or the boys---that somehow she made them better.

I think the truth is that they missed out on a lot.  I think about the time of Freddy's graduation from high school, last year.  That was an exceptional time, due to Janey's long hospital stay, but only I was able to attend his graduation.  Neither of us saw him off to his senior prom.  We weren't there for just the general excitement that goes along with the end of senior year.  I can't sugarcoat that.  He missed out.

Both boys have learned to be independent.  They probably had more freedom and less parental involvement (or interference) than most kids their age.  We certainly weren't able to be helicopter parents.  Although that might be a positive, it wasn't a choice.  It wasn't a parenting style.  It was just reality---how it had to be.

I can't even begin to count how many times there were that the boys wanted to do something, like watch a TV show as a family, but Janey had a meltdown and we wound up not being able to.  I think too often, we just expected the boys to understand that her needs had to come first.  I feel guilty about this, although I don't honestly think there was a way we could have handled it differently.  If we tried, as we did a few times, to power through Janey's outbursts and screaming and keep to our plans, it wasn't enjoyable, and the boys usually were the ones to call it, to give up.  I can't sugarcoat that.  I do know that as kids get into their teens, hanging out with parents is not always the top fun on their lists, but I wish we'd had more chances to give it a try.

This is a pretty downbeat post, but it's an honest one. I can honestly say, though, that the boys love Janey and she loves them.  We're a family.  Having a sibling with autism is a fact of the boys' lives, and always will be.  She's not a character builder, or a barrier to overcome, or a inspirational story to tell.  She's their sister, and all three of my children are amazing people. I'm pretty lucky that way.

Tuesday, May 10, 2016

Sometimes, you do have to cry

I've been working at starting seedlings inside a lot this spring.  It's been a mixed bag of successes and not.  I started everything too early, and the spring has been very cold, but everything was getting too big for the starter pots and too leggy to live, so I had to put a lot of things outside before they were ready, and they are not doing well....and I could go on and on.  All this is said as background information for yesterday and my big cry.

Janey came home from school in her typical after school no talking mode.  We have worked out what she likes to do, and it doesn't need a lot of words---a little cuddle, then a lot of cheese and onions, then some videos, then usually a shower.  We did that routine, and I put a dress on her to be ready for the next part of her evening routine---a car ride with Tony when he gets home.

Not my actual seedlings, but very similar ones!
Then I made my big mistake---a quick check of my email.  Janey was happy, in the next room, watching a video.  I got an exciting email from William, the older of Janey's two brothers, saying he had been nominated for a history honor society, kind of like Phi Beta Kappa for history majors and historians.  I was very proud of him, and wrote a quick email back to say so, and then started to forward his letter to his grandparents.  Janey came over at that moment, and I noticed her dress, previously clean, was covered with dirt.  I ran over and saw she had somehow, in the literally three to four minutes I hadn't been actively watching her, played around with some pepper seedlings I had been planning on planting outside that afternoon later.  They were all over the floor, dirt was everywhere and a spring's worth of growing them was going to be for naught.  It was actually pretty impressive how much she did in so little time.

I stayed calm.  I didn't even feel like being angry---I don't get angry that often.  And at first, I didn't even feel that upset.  But as I started to clean up the table, floor and Janey, I started to cry.  I couldn't stop, once I started.  I had been feeling low for a few days, and it all hit me hard right then---that still, after all these years, it was still impossible to have a few minutes to myself, how it felt unfair to William and to Freddy how rarely I could concentrate just on them, how I couldn't see any end in sight to the tough parts of life with Janey.

As I tried to clean, she decided she wanted a video.  I told her I had to clean up first.  She didn't take that well, and started screaming and arm biting.  I kept cleaning, and kept crying.  When she saw I was crying, she gave me a curious look, but then went back to screaming "I WANT KIPPER!"  In that moment, I felt totally defeated.  I felt like I can do all I can to keep Janey happy, and still, the minute I can't do what she wants that second, she's furious.  She doesn't think "Gee, she's been doing what I wanted all afternoon, and in fact for years, really.  I made a huge mess and she's cleaning it.  I could lay off her for a minute"  Of course she doesn't think that.  It's not in her to think it, and when I am not in a state, I can accept that.  But as the vacuum jammed and the floor became more covered with wet dirt and dead seedlings, I wasn't thinking well.

Life with Janey isn't easy.  I know here I'm supposed to say life with any child isn't always easy, that the special rewards of being her mother make up for the tough times, that it's not a child's role to make the life of their parents easy---I know all that, and I believe all that.  But there's a difference here. Although she makes some progress in some ways, although as I wrote about recently, her stages like the mischief stage do eventually get better, Janey isn't ever going to really grow up.  There isn't going to be a day when she truly understands that I'm doing the best I can, that maybe she could wait five minutes for a video while I clean up, that she shouldn't toss dirt on the ground, that I have feelings too.

I've regrouped today.  I'm ready to get back out there, to do my level best to help Janey have a good life, to try to be the mother I want to be.  But I am pretty sure each of you knows the feeling behind the tears yesterday.  If we don't admit it's tough sometimes, it's a very lonely kind of sadness.  We have to be able to admit this isn't an easy gig, being a parent of a child like Janey.  I am going to resist for now the urge to modify that statement, and just let it stand, for now, for once.  It's not easy.

Wednesday, May 4, 2016

"A Good Mother Would Never...."

Like many mothers, I have an idealized image of a good mother in my head.  In my particular case, it's the autism brand of good mother.  The autism good mother is endlessly patient.  She completely accepts her child's autism, while at the same time doing everything in her power to help her child live in the world.  She constantly seeks out therapies which would help her child, yet at the same time makes sure her child realizes they are perfect just the way they are.  She is careful with diet, with tone of voice, with IEPs, with toys, with TV watching...with everything.  And the one thing she never, ever does, of course, is yell at her child.
We all know the good mother is a myth, but I think many of us still strive to be that myth.  Part of it is what we read.  Those writing about parenthood, without maybe doing so consciously, paint themselves in the best light possible.  We might jokingly admit to small transgressions "I put on a video just hoping she would leave me alone for a while!  I gave her soda for breakfast!  I dressed her in yesterday's clothes again!"  But we don't talk about the moments that are not funny, not silly.

The other night, I yelled at Janey.  I really, really yelled at her, loudly and angrily.  I feel awful about it.  I'm not a yeller.  I don't lose my temper often.  I can only think of a few times in my life I truly lost my temper.  That's not a result of some wonderful self-control---it's just not in my nature to get very angry very often.  I get depressed instead, or silent, or secretly seethe internally.  But this time, I really yelled.

The setup was this:  Janey had come back from a ride with Tony.  I took her to the bathroom, as we do after a ride.  She didn't use the toilet.  I asked her a couple times if she was sure she didn't need to go, and she repeated "sure she didn't need to go!"  Then she wanted to cuddle on the bed.  As soon as we got on the bed, she looked at me, smiled, and proceeded to wet the bed all over.

For more background, this was the 5th or 6th time in a row that exact scenario had played out.  I'd take her to the bathroom, she wouldn't go, and then she'd go straight to the bed and wet it.  I had spent the last many days washing blanket and sheets.  She won't leave waterproof covers on---in her eyes, under the covers usually means straight on the mattress.  We got a new mattress, badly needed, a few months ago.  We can't buy a new mattress every month.  

So, without stopping to think, without taking into consideration all the things I want to have taken into consideration with Janey---that she might not understand what I have said, that there might be sensory reason for her actions, that she truly might not realize she had to go until she's on the bed, that she prefers to use the bathroom totally on her own and not be taken by me, that the reason for her actions might be something I don't understand at all but that in her head is totally reasonable---I yelled.   I said "You stop that!  You go in the bathroom right now and use the toilet!  YOU CAN'T KEEP PEEING ON THE BED!!!!"

Janey's response?  She laughed.  After a while, she did get the message that I wanted her to go into the bathroom, and she went.  I lay there, angry and wet and just plain tired of it all.  It took a few minutes for the guilt and sadness to set in.  I don't want to be like that.  I don't want to yell at Janey, or have anyone yell at her.  

A part of me does understand that even a saint would sometimes lose their patience with Janey (or with almost any kids, at some point).  I do know that it's likely that every parent on earth has yelled at their kids once or twice.  But still---I wish I hadn't yelled at her.

When I calmed down, I told Janey I was sorry.  I told her that again the next day, and the next.  I washed the blankets and sheet again.  I put down the pads again, and hoped she wouldn't move them.  I told myself that her progress with toilet training has been great lately.  She has worn underwear to school for months, with barely an accident.  She almost never misses with "messy" toilet needs.  She uses the toilet for urine at home much of the time, and she prefers underwear to pullups now, and we even take her in the car in underwear.  The bed issue is something we need to work out (for daytime---I don't imagine she'll be out of pullups at night for a long time, if ever), but overall, she's doing well.  
In some ways, there is good in the Good Mother ideal.  It's something to aim for.  But none of us are going to always be that Good Mother.  However, most of us are smaller case good mothers, indeed.  We love our kids.  We try every day to do the best we can for them.  We aren't perfect.  But especially for those of us with children with special needs, we need to take the Good Mothers we read about with a grain of salt, and to keep just being the good mothers we are, and supporting each other in that sometimes incredibly challenging task.

Monday, May 2, 2016

Later and Longer, but the stages do pass

Sometimes, it takes the observation of a stranger to realize things.  A month or so ago, I was with Janey at our favorite store, the Savers thrift shop.  She was looking with me at toys when I noticed another little girl, about Janey's age, who I strongly guessed was also a member of Autism Nation.  She ran over to where we were and grabbed a stuffed animal.  Her mother was right behind her and apologized, and I said it was fine, and then said "I think our girls are kind of similar"  She looked at Janey and smiled, realizing what I had realized, and then said "But my daughter is wild!"

I realized at that moment that Janey is no longer wild much.  She doesn't run away from me.  We can go for a walk and not hold hands, and she pretty much stays with me.  Sometimes she goes a bit ahead, because I am a slow walker, but I can call her to come back or to wait for me, and she does.  I don't worry about losing her if I take her to a store (which I don't do much, as she still doesn't like them at all) or an outdoor place.  She of course still is in motion most all the time, but it's mostly hand flapping and jumping, not running away.

It's always a bit of a surprise to me to realize that a behavior that Janey used to have is gone.  I think that's because stages with Janey show up much later in life than with most kids, and last much longer.  That can make them seem like they are just part of her, but they aren't, always.

Another example was Janey's mischief stage.  That was a tough one.  She'd do things like empty bottles or jars or glasses of water onto the floor, or whole bottles of shampoo into the tub.  Even when watching her every second, she'd manage to slip a little ahead of us and do something messy and destructive.  That stage lasted about a year, and it was a long year.  I think now it was a stage that is a typical toddler stage, exploring the world.  The difference was that Janey was taller and more mobile than a toddler, and less able to understand limits, so it was not as easy (or as cute) as it would be with a toddler.  Now, unless Janey is truly trying to make something she's seen us make, she doesn't do the mischief stuff much.  She might decide to make Kool-Aid using half a jar of powder and a drop or two of water, in the process making a huge mess, but that is a by-product of trying to help herself, not just a mess for fun.

The toughest stage of all is one I will euphemistically refer to as the "diaper incident" stage.  If you have a child with autism, you probably know what I mean.  It's horrible, horrible, horrible.  It results in malodorous messes that take hours and hours to clean, and a feeling of total despair.  That stage lasted a couple years---not with incidents every day, but more than enough.  One is more than enough.  Now, while knocking on wood and pleading for no jinxes, I will say that Janey is pretty much 100% trained in that part of toileting.  Thank goodness.  The other type of toilet training is maybe 70% right now (although close to 100% at school) and I will write about that soon, but the incident part?  Hopefully gone for good.

The bottom line is that the stages Janey has gone through, and a lot of kids with autism go through, are not completely unheard of stages for typical kids.  But they start far, far later in life, when there is more potential for mayhem and less tolerance by the general public, and they last much longer.  At least some of them, though, do pass.  They pass quietly.  There isn't a sudden moment when they end.  It's more a gradual realization that, wow, she hasn't run away from me for a long time now.  She doesn't empty shampoo any more.  She hasn't done the horrifying "painting" in years.  Wow.

Some parts of autism are, at least for Janey, probably going to be forever.  But other parts aren't, and I am proud of the progress my sweet girl has made, just as much as a mother of a two year old is proud when some stages end.  I'd say I'm even prouder of the end of those later and longer stages.  And more relieved.

Wednesday, April 27, 2016

Thoughts on vacation and school

Janey's April vacation was a good one.  We didn't have a lot planned, and most of the days were just Janey and me hanging out, watching TV or reading or playing outside.  We had two nice visits with my friend Maryellen, who Janey adores, and one outing for shopping (clothes, which Janey tolerated for FIFTEEN MINUTES!) and ice cream, but mostly we just did not much. 

Janey doing one of her favorite things!
By the end of the vacation week, I noticed something I often notice after times when Janey and I are at home a lot together.  Her talking increased a good deal.  She had been in a low ebb for talking, but by weeks end, I was hearing longer phrases and new words.  At one point, outside, I said "Look at my flowers, Janey!" and she said "The daffodils!", a word I had no idea she knew.  She was stringing together thoughts, like "want to go on the bed and snuggle under covers?" It just felt like we were communicating better than we had in a long while.

Janey's outbursts were short during vacation, and pretty easily dealt with.  I read a book about adopted children with attachment disorders.  That isn't what Janey has, as she isn't adopted and I don't think she has an attachment problems, but the strategies for dealing with that problem interested me, and weren't too different than I do anyway.  Mostly, it involves keeping calm when the child is not calm, and not ever using things like time out---instead, giving more attention when behavior is tough.  I've been trying that, not as something I'm going to always do, but trying it, and it is working well.  When Janey screams and bites herself, I say "I think you need a snuggle time with Mama" and often, very quickly, Janey is happy and smiling.  With her outbursts, it's a matter of whatever works, and it was nice to have that working for now.

I was interested to see how Janey did with school starting again.  I very much like Janey's teachers and therapists and everyone I've met in the autism program at her school.  But sometimes, I'm starting to wonder if just the whole structure of school is tough on Janey.  School is not really designed for someone like her.  I don't think she enjoys ABA, or any kinds of art type activities, or almost any structured learning.  She likes music, and being outdoors, and taking walks.  They do those things at school as much as they can, but she is not the only kid in her class, and they are charged with teaching her, not just keeping her happy.  

This morning, Janey was not at all eager to go to school.  That is new for her.  She almost always like going places, almost any place, and she's always been eager to get on the bus.  Today, she asked for a car ride right as she got up, and was very upset we told her it was a school day.  She seemed to resign herself after a bit, but as I watched her head to the bus, she looked grim, stressed.

Sometimes, that mean voice in my head which is my own judgemental side says "if you were a GOOD mother, you'd homeschool her!"  Well, that is not going to happen.  Janey needs school, and I need the respite that school provides.  Even with a good vacation, I was extremely ready for Monday to come and school to start again, and I feel quite sure Janey would be very sick of being home with me after not too long at all.  But I wonder what education for Janey would look like in an ideal world.  I am so lucky in that I honestly have never had a teacher for Janey I didn't love, and who I didn't feel loved Janey.  That's not the issue.  It's the whole structure of school.  School is set up for learning, not for life skills or for learning to do things that will provide lifetime happiness.  The goal at Janey's school, which has two parts, really, a "regular" part and an autism part, is stated as "We believe every student will attend college"  I do think they realize this is not a realistic goal for Janey, but my point is that the "normal" school model seems to be more modified than replaced when designing programs for kids like Janey, and that just doesn't always make sense.  This is a systemic problem, not a problem with Janey's specific school.

I'm doing a very lot of thinking lately about school and Janey, and about how I can be prepare her for the future.  I want to honor who she really is in this preparation, not a mold that doesn't fit her.  I hope I can figure out a way to do that which will work for her and for us.

Sunday, April 24, 2016

Legoland Discovery Center Boston!

This past week has been vacation week here, and I must say something I never thought I'd say about a vacation week with Janey---it has been relaxing and fun!  For the most part, anyway.  She's been in a banner mood, cheerful and talkative and cooperative and just pretty much a joy.  It's been really something.

Janey looking at Boston in Lego form
And today we had a special treat to top off the week...Legoland Discovery Center Boston!  I was offered tickets to an autism-friendly special time at Legoland by one of the organizers, who had read this blog.  I've heard of bloggers getting offered things like that, but this was the first time it happened to me, and I was quite excited!  However, I really was unsure how it would go.  Janey has never shown a real interest in Legos, and I didn't know much at all about the place.  But I love the idea of autism-friendly times at museums and other venues, and I wanted to give it a try.

Well, it was a huge success!  The event was from 8:30am to 10am, before the regular opening time of Legoland.  I felt worried Janey would want to leave after a few minutes, and I wouldn't be able to write much about what we did there.  However, we wound up staying until around 10:15! (you could stay as long as you wanted, even once the regular opening time started)

Gillette Stadium, Lego style
The other surprise was how much Tony and I enjoyed ourselves.  The coolest part, to us, was the Boston made all out of Legos.  All the big tourist places were included---Fenway Park, Cheers, the Hancock Tower, Old Ironsides, and there were also things like a T bus and commuter rail, Logan Airport and City Hall.  It's really something what you can create with Legos.  Janey seemed to enjoy looking at the Lego buildings too.

Her favorite part, I think, was the two rides.  There was a ride sort of like the Dumbo ride at Disneyworld (from what I remember the one time I was there as a kid), where you go round and round and can also go higher or lower.  With this ride, you did that by pedaling bike-like.  There was also a train type ride where you could shoot spiders and bad guys with laser guns.  Janey didn't try the shooting part, but Tony and I did, and the ride kept score (Tony beat me!)

Fun on a ride
There were areas where you could build with Legos, which Janey wasn't too into, but there was enough else to do so that was fine.  There was also a 4-D movie, with 3-D glasses and special effects like snow.  I loved that, as I've never been to a modern 3-D movie, but Janey didn't last there.  That's what I love about autism events---nobody gets upset if you need to leave.  Tony took her out of the movie area and I stayed for the about 10 minute show.

Tony's cool creation---Janey is unimpressed
Janey enjoying the experience
I talked to one of the organizers of the event, and she said this was the 2nd time they've had an autism event.  She asked us how we heard about it, and told me that they don't like to advertise a lot, because they want to keep attendance low, so only kids with autism and their families are there, but they also want to get the word out to those who are their intended audience.  I can see how that would be hard.  They did send home a flyer from Janey's school, so I think they are doing a good job with outreach.

At the playground
It's wonderful to be able to take Janey to "regular" places, and to not have to worry about meltdowns in lines, overwhelming crowds and stares from her behaviors.  I think one of the best parts is that we ALL can enjoy ourselves, as a family.  So much of the time, it seems like either Janey can enjoy herself, or we can, but not both, and for us all to be having fun together---that's wonderful.

After the event, we walked around the area a bit, and went to a cool little riverside playground and then had a fancy piece of cake in a French type bakery.  It was a whole morning out.

I'll write more soon about vacation week and my thoughts on it.  Tomorrow is back to school.  Often, I would have been counting the seconds, but this vacation, there is a small part of me that almost wishes vacation was longer.  Miracles never end.