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...

Why just at home?

Yesterday, I got a call from Janey's school to pick her up, as she was sick to her stomach---needing repeated pull-up changes.  I can honestly say that's the first time Janey has been that particular kind of sick in her whole life.  I am not sure what's up.  She seems better today, but to not infect other kids, I'm keeping her home.

While picking her up, I got to talk a little to one of the supervisors of the summer program, who I've known for a while.  She told me something that surprised me---that Janey has not been screaming or crying almost at all at school this summer.  In fact, she said the day before Janey had screamed once, and surprised the ABA specialist that was working with her.  They told her that screaming was something Janey had certainly been known to do, but it wasn't a behavior she had been showing at school during the summer at all.

Well, that set me back a bit.  Of course, I was very glad Janey had been happy at school, but at home, almost every day, she gets off the bus and screams and cries for a LONG time---often two hours.  Nothing we can do seems to help.  I had wondered if she was hating summer school and reacting to that, but that doesn't sound like the case.  So why at home?

I have a couple ideas.  I don't think she hates being home.  Much of the weekend, and later in the evenings, after the screaming is done, she's very happy.  I think part of it is that she holds herself together at school and relaxes at home, and lets out her tension.  My sister used to do this almost every day, I remember.  She'd be perfect at school, but would come home and within minutes would get upset by something, and would fall apart.  I think it's something a lot of kids do.  Another part of it might be that she really does like school a lot.  At school, she often gets intense one-on-one attention.  She has people working with her, a busy schedule, outdoor fun---things are kept moving.  At home, as much as we try, we can't quite give her that intense attention.  The boys need rides, we need to clean and cook and sometimes sleep.  Although we are with her constantly, we aren't interacting with her in the intense way that school provides.  And although I think she likes some down time, it's a transition every day, I am sure.

I've realized something interesting lately.  How I react to Janey's crying affects how long it last almost not at all.  I can do everything in my power to stop her from crying, to keep her happy, or I can do nothing, and the crying lasts about the same amount of time.  It's like she needs a certain amount of time to scream and cry, and once that time is over, she stops, no matter what I do.  I've taken lately to saying to her when she starts "You seem very sad.  I am right here if you need anything to help you feel better.  I'll wait for you to ask me for what you need".  Then I just wait.  I stay near her, but I don't frantically try to help.  I do make sure first she's had enough to drink and eat, that she doesn't need a change, that nothing I can see is hurting her.  Then I wait.  If she asks me for something (usually, it's "snuggle on the bed!"), I do as she asks if I can, but I don't desperately try to help as I used to.  Basically, I've realized it's totally useless to do so.  Last night was a good example.  Tony was with Janey, and Freddy and I were watching the last episode of Star Trek The Next Generation, something we had been eager to do.  Janey started screaming.  My impulse was to turn off the TV and put all my attention and energy into trying to make her happy.  But Tony was with her, and I really wanted to see the show, and most of all, I knew it wouldn't help.  Janey screamed for about half an hour, and then stopped and was as happy as a clam.  And I got to spend time with Freddy.

Now for something completely different and off-topic.  If anyone is interested in seeing Janey's very cool brothers, here's a link to a music video they made together, featuring all original songs written by William, with acting by both of them and film editing by Freddy!  I have three very cool kids!   VIDEO LINK!

90% Chance of Sunny Days

After my last dark post, things have calmed down.  Or that is, most of the time.  If you took away about 10%, or maybe less, of the last week, it would be one of Janey's best weeks.  In many ways, she is doing wonderfully.  We have noticed a strong uptick in her talking.  She seems to be truly trying to use sentences more.  She has used the potty successfully at least once every day for five days now.  She has treated us to a ton of her huge happy smiles.  She's been quite a lot of fun to be around.

But the 10% stormy weather?  Pretty tough.  We had a couple truly horrible diaper incidents and a few unbelievably intense screaming fits.  However, there is a quickness to her dark times than we've never seen before.  In the past, a sad or upset Janey meant the next weeks were going to be sad or upset.  Now, she seems to move past the moods quite quickly.

After I wrote last time, quite a few people mentioned Janey might be starting puberty, and that PMS type symptoms in autistic girls can be very, very tough.  I think it's very possible that might be the case.  In a way, that makes me relieved.  Not that I am looking forward to all that, but it gives a reason for how Janey might be acting, and gives me hope that the other, better times might be the new norm.

Janey had her annual physical today.  She rarely sees the doctor in between physicals, as she is extremely healthy.  She basically never gets sick.  I don't think she's missed a day of school due to illness for three years or so.  Her older brother William is the same way.  So her doctor was seeing her after a year of change.  And Janey put on the charm, hugely.  I don't think he's ever seen her at her best, ever.  He has know her from the day she was born, and her brothers long before that, but she has always been very upset during doctor's appointments.  Today, she was in a wonderful mood.  She talked for him a lot more than she ever has, she cooperated in being examined, she sang and danced around, and she said goodbye to him by name after the appointment.  Something in the way it all went made us feel quite hopeful and good.  She has grown up in the last year, literally as well as emotionally.  She is exactly at the 50% percentile in height and weight, and she suddenly looks like a big girl, not a little girl.  Everyone at the office noticed it.  When I looked back at a year ago, I could see that in some ways, she's made good progress this year.

Here is a picture of her at the doctor's office, smiling her 90% of the time smile.  How I love that girl.

What Made Janey Autistic #2 in a series

I want to say before I start this entry that I am not a doctor, obviously, and I am using medical ideas to write this that I have remembered along the way.  Please don't take them for hard facts, as they could be wrong!  What I'm trying to do here is give my thoughts based on what I've read and heard, which is I think what we all try to do with figuring out this autism bit!

That said, my theory #2 of what caused Janey's autism is that autism is an autoimmune disease, and our family is for some reason heavily prone to autoimmune diseases.  As I understand it, an autoimmune disease is one in which the body's own defense mechanisms get overactive and attack the body they are supposed to be protecting.  The idea is that something triggers the body to start attacking the brain at some point, causing autism.  It could be some little sickness we can't even remember the child having, or some other trigger that is impossible to figure out.

Our family tree is full of examples of diseases that are at least in part autoimmune.  I have a pretty much non-functioning thyroid and have to take large doses of thyroid replacement every day.  I also have asthma.  When I was pregnant with 2 of my 3 kids, I had pre-eclampsia, which is thought to be another AID (auto-immune disorder, so I don't have to keep writing it!)  Tony is an insulin-dependent diabetic, a type that is kind of a cross between type one and type 2.  Freddy has asthma like me.  My mother has Raynaud's Disease.  My sister, my mother, Freddy and myself all have pretty severe seasonal allergies.  My sister had thyroid cancer.  My uncle and grandmother had or have disfunctional thyroids, like myself.  Almost everyone in Tony's family has the same kind of diabetes he does---his brothers, his father and many aunts and uncles and cousins.  The list could go on and on.  We are poster kids for AID.

One, someplace, I read that another sign of being prone to AID is when the MMR vaccine doesn't take as a child.  Both my sister Carrie and I were tested when we were at child-bearing ages, and were found to be not immune to rubella, and had to have another shot.  Our immune system fought off even the vaccine dose as kids, and didn't therefore get the immunity.

The AID-autism connection just makes sense to me.  You aren't born with AID.  Something triggers them.  That would explain why kids develop autism as they get exposed to more things in the environment.  Some people are pre-disposed to AID---not every kid is going to be triggered to be autistic.

A weird thing that also seems like a connection to me is how rarely Janey gets sick.  She doesn't get the colds or flus or viruses that go through her classes.  She's missed almost no school days due to illness in years.  William, who was originally also thought to be on the spectrum, is the same way.  Freddy gets everything that goes down the pike and more, so it's not just a family trait to not get sick.  I think Janey's immune system is overactive.  She gets rid of any illness that comes around, and does so overactively.  I can see how at one point, something might have triggered her body to go all out on attack, and mistakenly went for her brain, too.

As with the pregnancy/fever/flu theory, the AID theory could easily explain Janey's autism.  I wish it were the last thing that could, but there's more!  #3 in this series is coming soon.