Wednesday, October 1, 2014

Guilt and Bus Aides

This year, it seems Janey has a one-on-one aide on the school bus, both ways.  This isn't something we requested, or something in her IEP, or that we were told was going to happen, but we don't have a problem with it.  The aide in the morning gets on the bus when Janey does, and the aide in the afternoon gets off when Janey gets off.  There's another aide on each bus, for the rest of the kids.

I am not sure why Janey got a bus aide.  I don't think she's had real problems on the bus, not that we've ever been told about.  I'm sure she has screamed on the bus at least a few times, and bitten herself, because it would be pretty surprising if she never had, but usually she seems pretty calm on there.  My guess is that once she even once showed that she could potentially be very distracting to the driver, they insisted on aides.  And that is fine.

When Janey gets off the bus, it's usually about two in the afternoon.  Tony gets home about five.  Those aren't easy hours.  I've been trying to figure out ways to make them better, and I've over and over thought about trying to find a class or program during that time.  However, something always stops me.  I woke in the night last night thinking about it, and I realized I just plain don't feel able to take Janey anyplace in the car by myself any more.  I do take her for short rides, once in a while, but the thought of driving any distance with her, just the two of us, scares me very much.

Janey is rapidly getting bigger.  She's going through a growth spurt.  Along with that, she seems to be far more prone lately to sudden rages.  They come out of no-where.  Things can seem fine, calm, and then suddenly, Janey lashes out.  She lunges at whoever is nearby, she smashes things with her fist, she bites herself, she pulls our hair, she screams her incredibly loud scream.  If this happened while I was driving, it could be a catastrophe.  If you've ever driven the streets of Boston, you know that it's crazy out there.  I am not a confident driver.  I need to concentrate while I drive.  I hadn't realized it consciously, but the fear of driving alone with Janey is the reason I haven't been able to move forward with afternoon programs.

When I woke in the night last night and realized this, my default emotion was guilt.  That's no surprise.  That's my default emotion for any situation.  But then I thought about the bus aides.  Professional drivers, with already one adult on a bus, decided it wasn't safe to drive with Janey unless a second adult was assigned to her.  I had a moment I rarely have when I thought about that---a moment of realizing I shouldn't feel guilty.

I read a statistic lately in an article about autism and aggression.  It was one of those articles which highlighted very high functioning people with autism, and emphasized how rare it is for autistic people to be aggressive.  That's an important notion to get out there, I agree.  The article had a statistic I hadn't heard before---that only 7% of autistic people are low-functioning with aggressive behaviors.  I wish I didn't have to admit to myself that Janey seems to be falling into that 7 percent.  I hope against hope she someone gets over the lashing out.  But for now, I have to live in the reality of the present.  And I have to keep her safe, and myself safe.  Until I can be sure that I can, I need to accept that I'm not going to be driving her around on my own very much.  And I am glad the Boston Public Schools transportation department helped me see that.

Monday, September 29, 2014

Randomly selected moments with Janey

Of course I probably can't really be random with my selections, but I thought I'd write about some everyday moments in life with Janey, just to try to capture who she is right now.

1.  We are all taking a ride to get Freddy things he needs for school.  There's a black car coming out of the parking lot near the police station.  We are trying to figure out if it's a police car or a limo.  Janey pipes in "It is a police car!"  We are all surprised and pleased, as it's quite rare for her to join in a conversation like that.

2.  Janey wakes me up in the middle of the night.  She lies down next to me, and I try to go back to sleep.  She says "You want to take a shower?"  I say no, not right now.  She asks a few more times, with the same answer.  Then she says "You want to see the shower curtain?"  I put up a new curtain, the day before, with owls on it.  Pleased that she noticed, I do get up so we can go see it.  She immediately takes over the whole bed.  I've been fooled again by her sneaky nighttime tricks.  I go to sleep in her bed, until she decided to switch beds again.

3.  Janey is watching "The Little Mermaid".  She's been asking for it all weekend, and we've been telling her she can't watch it because she pulled out the tape.  Finally, Tony decides to try to fix it, and is successful.  She is thrilled to see it, until the scene where Ariel's father yells at her.  When that comes on, Janey smashes against the TV with her fist, a recent behavior that she knows will result in the TV being unplugged.  I am watching her as she does it, and I can see in her face she realizes her mistake a second after punching, and she screams in frustration.  The TV is unplugged anyway.

4.  I wake up Saturday morning after having a nice night's sleep.  Janey has been up a while already, having her favorite type of weekend breakfast with Daddy, various greens with olive oil and hot sauce.  When she sees me, she dashes over and gives me a big hug and smile.

5.  We are coming back in the car from being out visiting William.  It's later than Janey usually stays up, about 9 pm.  She has been fairly cheerful, but suddenly and without warning, she lunges at Freddy, who is sitting next to her in the back seat.  She tries to pull his hair.  He grabs her hands to keep her from doing so, and she bites at them.  Freddy manages to keep her from hurting him much, but it's a struggle for the 10 minutes until we get home, completely with her screaming.  We offer to stop, to have me sit in back with her, but Freddy declines.  He's gotten used to such scenes over the years.  I cry in the front seat.

6.  I put on "Olivia", which we have in streaming video from our Amazon account.  Janey hasn't seen it for years, but she is instantly taken with it.  She watches the whole episode, and then deftly navigates the user-unfriendly interface to put on the next episode.  Over the weekend, she watches eight episodes---eight different ones, not the same one obsessively eight times.

7.  I am dressing Janey for school.  She is tired and annoyed, and kicks me in the stomach.  I am too tired, bone tired, to get upset.  I just say "You can't do that.  We have to get dressed".  She becomes instantly cooperative.  She keeps looking at me with a worried look, as if she expects to hear more about the kick.  When I am done dressing her, she kisses me, which she almost never does.

8.  Another morning getting ready for school.  Janey is in another bad mood.  We managed to get dressed, but she is crying and screaming.  She goes over and gets the hairbrush and hands it to me, while saying "Don't brush your own hair!  Don't brush your own hair!", which is what she says when she's upset I'm brushing.  I brush quickly, to get it over with, without counting out twenty brushes, as I usually do.  When I stop, Janey screams and hands me back the brush, yelling "Thirteen!  Fourteen!"  That is right where I left off in my silent counting.  I brush up to twenty, as she screams.

9.  Another middle of the night.  Janey wakes me up and saying "Chinese rice!"  I tell her we don't get takeout in the night.  She considers that a moment, and then says "Pizza!"  I repeat myself.  She is undaunted..."Happy Meal!  Chicken nuggets!  Fries!  Chocolate Milk!  Toy!"

10.  Janey gets off the bus and her Auntie Rose is just arriving at our house.  She hugs her aunt, thrilled to see her.  Auntie Rose goes upstairs to help my brother-in-law in his apartment.  Janey has her snack downstairs with me, and then says "Go see Nana and Grandpa!"  I tell her they are far away right now, although I suspect what she really means.  She thinks a minute and says "Go see Auntie Carrie!"  I tell her Auntie Carrie is even further away, in Colorado.  I ask her "Do you mean Auntie Rose?" and she smiles a huge smile and says "GO SEE AUNTIE ROSE!"  So we do.

Everyday life with Janey is hundreds and thousands of moments like these.

Thursday, September 25, 2014

Okay, Scientists, You Got Me Again!

Once in a while, I have a sneaking suspicion that autism researchers are messing with me.  I think they get together and say "Okay, let's pull up Suzanne's medical history and that of her family, look at everyplace she has lived and all the circumstances of her pregnancies and childbirths.  We'll pick something new from all of that this month to release as a possible cause of autism.  Wait 'til we see the look on her face!"  Of course, I'm not truly that paranoid or self-centered, but sometimes it's amazing how many potential causes of autism would work for me.

The newest is iron intake.  I have almost always tested as anemic, and that was very much the case during all my pregnancies.  With Janey, it was exasperated by the fact that the iron I was taking seemed to interfere with my thyroid medication.  Because having a thyroid basically not working was considered much more dangerous than having a low iron count, for the last half of the pregnancy, I didn't take iron.  I tried hard to eat a lot of red meat (despite popular belief, I was told it's a far better source of iron than green vegetables), but still, my iron remained low.  So there's another reason for Janey's autism!  It joins a nice long list, including the low thyroid itself, a family history of autoimmune disorders, my allergic reaction to Aldomet at 12 weeks pregnancy, the fact I live near a major street, several possibly on the spectrum people in Tony's family and mine, Tony being an older father, my living my first 6 years near Lake Eire at its most polluted with PCBs, preeclampsia during my pregnancy, birth trauma (Janey's umbilical cord was around her neck twice)....that's just the ones I can think of easily off the top of my head.

Those scientists missed the boat with ONE potential cause I saw the news today---having children very close together.  However, I'm not out of the woods with that one, because if you wait TOO long to have a child, over 5 years (there is 7 years between Janey and Freddy, exactly), the risk of autism again rises by 30%.

What do I do with all this?  Not much.  There isn't anything I can change from the past, and I'm certainly not planning on having any more children---I'm 48.  I am glad research is being done, but all joking aside, the fact that so many of the factor apply to me is probably the case with many parents of autistic kids.  There are so many potential reasons thrown out there that I couldn't imagine being a pregnant woman trying to avoid all of them.  There's just too many.  I think about this in terms of my sons someday.  If they become fathers, there were certainly right off the bat be an increased risk of them having a child with autism, and I feel for their future wives thinking about them trying to avoid any further risk.

Do I sometimes feel guilty about all the risk factors that might have affected Janey?  Of course I do.  I know I shouldn't, but guilt isn't a logical emotion.  I don't obsess over it, but I think about it.  I get angry about a few of them, especially the Aldomet reaction.  I wonder if I should have had a C-section---if a good ultrasound could have seen the cord around Janey's neck.  I worry I didn't do enough to keep my iron up.  I have other worries, the kind that suddenly hit you in the middle of the night and aren't logical, but the middle of the night brain isn't good at logic.

I hope some day, all the possible causes of autism are narrowed down, or at least better defined, so that knowledge of them can be incorporated into prenatal care and PREprenatal planning.  I suspect, though, that no matter what, we'll never totally have answers about autism's cause.  I hope society will do its very best to support the children that, despite all the research, still develop autism.

Monday, September 22, 2014

Specialer Needs within Special Needs

One thing I really like about Janey being in an autism-only classroom is that lots of information gets sent home about opportunities for kids with special needs.  In an integrated classroom, it would set the special needs kids apart to just give them such information, but in a classroom where everyone has special needs, everyone can be given the flyers.  I love looking them over.  They do sometimes, however, point out to me that "special needs" covers some pretty wide ground.

I got a flyer recently about a camp run by the Boston Centers for Youth and Family---the community centers of Boston.  It was about a winter version of a summer camp they hold, called Camp Joy.  It meets on Saturdays, near us, and it sounded great---things like swimming, games, field trips, etc.  It was very reasonably priced, and I was starting to think about doing the paperwork when I read more closely, and saw that one of the requirements was that "campers must be able to interact in a 4:1 participant to staff ratio".  Well, that took care of that.  There is no way on earth that would work for Janey.  She could, if she was in a very good mood, maybe be okay with a 2:1 ratio, but she often needs 1:1, and during her tougher moments, more like 1:2, with two adults for just her.  

This reminded me of the respite house we tried last summer.  It was also for children with special needs, but we decided to stop sending Janey when it was obvious that the ratios of caregivers to children was not at any kind of level safe for Janey.  It was a beautiful place, run by very well-meaning workers, constructed I imagine at great cost by donations, but it left out kids like Janey.


I am not sure of my feelings about special needs programs that can't handle the "specialer" special needs.  I like to keep rooted in reality.  I know that every program doesn't have the staffing or means to serve all children.  I know that if they put their funds into being able to serve Janey, that might leave several other children with less demanding special needs without a program.  I don't expect special treatment.  But sometimes it's very frustrating that Janey's needs leave so very few of the opportunities for even children with special needs open to her.  

What would be a solution?  One I thought of was recruiting college students as volunteers.  There are many colleges in the Boston area, and many students preparing for a career in special needs teaching.  Maybe they could get class credit for providing one-on-one help so that high needs children could attend something like the Camp Joy winter camp.  I'm not expecting them to help Janey go to even a regular camp, or something like a regular dance class.  I would love help just so she could go to a special needs camp.  I am sure there are a lot of other mothers and fathers like us, that would love that help.

One of the problems is just with the term "special needs".  It's pretty general.  I have been trying lately to avoid terms like "low-functioning autism".  I can understand that it labels Janey and kids like her, that every child has areas where they are low or high functioning.  But if you just say "special needs", you aren't saying a lot.  And the general public might think, and in fact I've often heard it said "There's ALL KINDS of programs out there for kids with special needs!"  Well, that is even debatable, but there are some, but except for the public schools, most of them can't serve a child like Janey, a child that needs absolutely constant supervision and is prone to sudden accelerations in difficult behaviors, a child that is not toilet trained and can only speak in a limited way.  What do we call kids like her?  SPECIAL special needs?  And how few people out there are aware of the challenges of raising a child is not even able to attend a camp or program labeled for being for children with disabilities or special needs?

I'll end with a thank you to the public schools.  I say it a lot, because I think it a lot.  I am so thankful that the public schools serve everyone.  I send Janey off to school just like any other parent.  She might not learn the same things, but she gets on the bus and goes to school.  I know that wasn't always the case, even in fairly recent history, and I am so glad that I am living at a time when it is.

Saturday, September 20, 2014

20 years of motherhood

Twenty years ago today, I became a mother.  I did so in dramatic fashion, with my son William entering the world two months early by emergency C-section after my pre-eclampsia had reached life-threatening levels, both for him and for me.  He weighed three and a half pounds, and I spend the first day after his birth in intensive care, with a dialysis machine on ready if my kidneys didn't start doing their job.  Luckily, they did, and luckily, William was out of the hospital in 3 weeks.  Today, we were with him at the moment he officially turned 20.  He is tall, smart and fun to be with, a sophomore in college.  But 20 years ago, we couldn't see the future, and we were terrified.

I think this start to motherhood affected me deeply.  From the very first minute of being a parent, I was taught that things don't always go as planned.  I never had even a minute of parenthood that wasn't coupled with that knowledge.  As William grew, and as his brother Freddy was born, I always felt a little on the edge of a cliff.  I never quite let my guard down.  When scary things happened, like both boys having asthma that at times led to rushed trips to emergency rooms, when Freddy screamed for the first three months of his life with colic, when we dealt with the ins and outs of parenting, I often felt surprised at how well most things did go.  My boys grew into themselves, discovered passionate interests, made us laugh with their insights and humor---I realized I loved being a mother, even if I was often holding my breath, waiting for what might come next.

And then came Janey.  And I realized that things don't always happen in an instant.  They sometimes happen slowly.  They take unexpected routes.  Our main worry about Janey for her first three years was her delayed physical development.  She finally walked after her second birthday.  She was talking quite a bit by then--in slightly odd ways, but well enough so that even though she was closely followed by Early Intervention for her physical delays, there was never even a suggestion of speech therapy.  It was when she was about 2 months shy of 3 years that I first had an inkling, a creepy feeling that something was changing.  Over the next six months, a little each day, she lost ground.  By the time she was diagnosed, at 3 years, 4 months, I was prepared.  I had had those 6 months to realize what was happening.  By that point, there was really no question.  She barely spoke, her eye contact was almost gone, she stared at her hands for long periods of time, she cried suddenly and fiercely over things none of the rest of us could figure out.

Her diagnosis didn't feel like a surprise.  I think I had been braced for something like that from the moment I became a mother.  The fact that she has progressed very little over the years, that she is most definitely on the lower end of the spectrum, that although she delights us every day, strangers on the street can and do see her autism at a glance---it somehow feels like something I saw coming that day 20 years ago.

Despite that, or maybe even because of it, being a mother is still the most wonderful part of my life.  Every day, my kids delight me and surprise me.  Every day, they amaze me.  When I think that I am the mother of three children, that I have raised three unique, fascinating, extremely cool kids---well, I sometimes still feel like I did 20 years ago---amazed and stunned that it has all happened.  Motherhood doesn't come with any promises.  It doesn't come with any sure paths, with any guarantees.  But it comes with rewards, so many rewards, and hugging my 20 year old son tonight while my other son and my daughter laughed and watched---that was one of the best ones.

Tuesday, September 16, 2014

Ten things I'm grateful for---an exercise in positive thinking!

I wrote a post earlier today, and then deleted it after a bit.  I've only done that once or twice, but in this case, I realized I was letting my own discouraged feelings creep too much into my writing.  I was writing about how I felt, not about Janey, and although I'm sure there's a time for that, I have always wanted this blog to be about Janey.

I've been impressed lately with grateful lists that people have put on Facebook.  I am going to try to challenge myself to write ten things I really, truly feel grateful for in my life, things that relate to Janey.  I guess, in a way, I'm again writing about me and not Janey, but hopefully in a way that will help me focus back in on her!  So here goes...

1.  I'm grateful Janey can talk as much as she can.  I know there are many, many parents of kids like Janey who would give almost anything to hear their child talk.  I try to never, ever take her talking for granted.

2.  I'm grateful for a husband who is amazingly supportive, a true partner in raising Janey, and her favorite person on earth.

3.  I'm grateful for my sons, who make me proud every day and who are wonderful brothers to Janey.

4.  I'm grateful for the Boston Public Schools, who do a fantastic job with Janey and other children with special needs.

5.  I'm grateful for Janey's physical health.  I don't think there's many 10 year old on the planet who have been sick less than her.

6.  I'm grateful for Janey's love of music.  It's something we can enjoy together, and something I hope is a lifetime source of happiness for her.

7.  I'm grateful for the internet, for the chance to connect with other parents around the world with children like Janey.

8.  I'm grateful for friends, both those I know in person and those I know on-line.

9.  I'm grateful for living in this day and age, where knowledge of autism is growing all the time.

10.  I'm grateful for Janey.  I'm grateful I have a daughter, a beautiful, interesting, fascinating and unique girl.  Here's a picture of her early on, the girl I thought I'd never have...

That wasn't even hard to do, and I feel better! There is something to this positive thinking bit...

Friday, September 12, 2014

A Tale of Two Afternoons

Janey gets home from school this year at about 2:30.  This is far earlier than other years, when she went to after-school.  I looked into after-school for her this year, and talked to the director, who seemed great, but it would only last until 4:15, and has no transportation.  That would mean I'd have to pick her up, as Tony would not be home yet, and driving out into Boston traffic at that time is not something I want to do.  So for now, Janey has the afternoon at home.

Mid to late afternoon has always been the toughest time of day for Janey.  I think she gets tired by then, due to her poor sleeping, but she doesn't nap.  She has used up her day's reserves of holding it together.  Daddy isn't home yet, and I am tired too.  If she hasn't eaten well, she's hungry.  Her medication is wearing off.  There's tons of reasons, and they all combine to make around 3-5 pm the most likely time of the day for meltdowns.

Monday, Janey got off the bus ready to explode.  She ran to her bed and flung herself onto it, something that looks like a teenager to me and almost makes me laugh, if it wasn't usually the start of trouble.  I went over to her and did my afternoon bit "I'm so happy to see you home!  I missed you a million!  How is my sweetie?  How was school?"  As usual, she doesn't respond.  Her pull-up was very wet, and so I started to change her.  When it came time to put another pull-up back on, she threw a fit.  She ripped the new pull-up.  If any of you have priced pull-ups for kids 8-14, you know they cost close to a dollar each.  So we discourage ripping.  I said "You don't have to wear a pull-up right now, but you have to wear some pants"  Janey decided she didn't want to.  She let me know this by starting to scream and grabbing my hair and pulling as hard as she could.  It took all my strength to get away from her.

I'll spare you all the details of the screaming, hair pulling and flinging about of things from that afternoon.  Suffice to say it was one of the longest two hours of my life.  When Tony got home, I was beyond discouraged and tired.  Janey was screamed out.  She looked burnt out, glassy-eyed.  So did I.

The next afternoon, I got her off the bus and braced myself.  She didn't look at me as she walked in.  She went straight for her computer, and started watching You-Tube videos.  On impulse,  I said "I'll be here reading if you need me".  She didn't.  For the next few hours, we barely interacted.  A few times, she went to get a snack and needed help cutting cheese or opening a jar, and I helped her, but we barely talked.  The house was quiet.  About an hour into the afternoon, she came over to me and said in a fast and odd voice, one I hadn't heard before from her, "Need a new pull-up"  I changed her as quickly as I could, without comment.  She gave me a look I won't forget soon---a look that said what she couldn't say in words---that she was thinking of the day before and glad we were doing this day differently.  When Tony got home, prepared to see us both as shells of ourselves, he was amazed we both looked rested and happy.

So what's the message?  I don't know for sure.  Whenever I think I've figured something out with Janey, I realize I haven't, so I'm reluctant to draw many conclusions.  But on Wednesday and Thursday, I took the same approach.  I kept things as quiet and low key as I could.  I interacted with Janey only when she requested it.  And we had great afternoons.

I keep thinking back to how I often greet Janey.  I do what I did for years with the boys.  I overact.  I truly am happy to see them after school, and I want them to know that.  I shower them with attention.  I think the boys liked that.  But the boys are different people than Janey.  Maybe it took me until now to really understand that isn't what Janey wants.  She has had an intense day at school, and she wants what a lot of kids want---to kick back, do her own thing and have her mother stay cool.  Every kid is different.  What Janey wants or needs, regardless of her autism, is not what William and Freddy want or need.  So for now, I'm going to back off in the afternoons.  No more dramatic greetings or smothering attention.  I will play it cool, and we'll see how that goes.