Autism Non-Awareness, Human Acceptance

Today is World Autism Awareness/Acceptance Day.

Last night, as I spent time with Janey as she went to sleep, I thought about this day a lot.  I thought about it, as people most often think about things, from a very personal viewpoint---that of Janey, and how best to help her through the world.  And I realized, in a lot of ways, helping Janey be accepted, in a full way, involves something that is the opposite of autism awareness.

Taking a step back, I'm thinking of my own view of politics, or really, the larger world.  For the most part, I completely ignore politics.  When I don't, I become easily overwhelmed.  There are so many aspects to it, so many personalities and philosophies and emotions and ideas.  And I can affect all of it very, very little.  I vote, and then I probably actually bury my head in the sand.  I do so not out of apathy, but because I know what I can do and I can't do.  I can't change the world, not in my current life.  But I can do the best I can for my own family, and so I look inward.  I try my hardest to be the best mother I can, to have the best marriage I can.  I don't succeed, of course, but I try.

The wider world of autism is in many ways like politics.  It's a huge world, and a huge spectrum.  Sometimes I try to look at it all, and take it all in, and I am overwhelmed.  As I sometimes see little of my own life in political life, I sometimes see little of Janey's life in my views of the wider spectrum.

And sometimes, trying to think about autism as a whole keeps me from focusing on Janey.  I start to feel paralyzed, in writing here and in making decisions for her.  When I look at the media for views of autism, I see little that seems anything like Janey.  The spectrum is so wide that there is almost no intersection between lives like that of The Good Doctor or Temple Grandin and that of Janey.  And I say that not talking about high or low functioning.  I am talking about personality, strengths, interests.  Janey is not part of a group.  She is herself.

What I have found, over the years, is that people who most accept Janey are people who most know Janey, as a person.  In a big way, that includes us, her close family.  I don't look at Janey thinking about autism, 99% of the time.  I look at Janey as my daughter.  Like every other person on earth, she is a mixture of many things.  At times, she is a delight beyond imagining.  At times, she drives me out of my mind.  I can say exactly the same things about her brothers.  Her autism doesn't make her who she is, any more than Freddy's asthma did or William's premature birth did.  It has affected her life, sure, very much so, but it's not the essential Janey-ness of her.

I've had on occasion over the years a telling reaction from people meeting Janey for the first time that knew ahead of time she was autistic.  It's a surprised reaction, followed by them saying "But she's so beautiful!" or "But she is so happy!".  Or, a few times, "But she's, well....(and here they don't use the forbidden terms but say in their own way that she's intellectually disabled)"  These people were, before meeting Janey, what they considered aware of autism.  They had awareness that led them to believe Janey would somehow look different than the norm.  They are surprised when they see a lovely, happy girl.  Then they are surprised she doesn't talk like a doctor or a PhD, that she isn't quoting train statistics or holding court on some focused high level math concepts.  Autism awareness has failed them.

To accept Janey fully, to accept all of our girls fully, and in fact everyone fully, we need to see them with non-pre-aware eyes.  We need to see them as they are.  Janey isn't an example of anything.  Janey is a person.  Like everyone, she has some special needs, in the most literal sense of that word, and her particular special needs are ones that society doesn't readily provide, so we need to help her more than we would others.  But if we look at her with fresh eyes, those not pre-filtered with autism awareness, we see her---a 14 year old girl, one who loves music, loves car rides, loves dancing, loves running around in fresh air.  One who doesn't communicate verbally very effectively, one who needs help with many life skills, one for whom academic skills are at a very low level.  One who delights those around her with her enthusiasm for life, one who is the most adventurous eater I know, one who last night hugged me tight and said "Love you!"

Without the filter of "awareness", without the filter of autism, Happy Acceptance Day!

Allowing ourselves to feel sad

Yesterday on the Rarer in Girls Facebook page, there was a great discussion about times when we parents feel down about our children's autism.  It made me think about how at times, it seems like we are being told that we aren't supposed to feel that way---that we need somehow to always stay upbeat, positive and forward-looking, that we need to never stop and feel sad or discouraged.  I find blogs like that sometimes, and to be perfectly honest, they are sometimes tough for me to read, because they make me feel very guilty that I can't maintain that level of positive feelings and optimism.  The discussion yesterday made me think.  I think it's only human, only natural, for us to feel discouraged, sad, down and even despairing at times, and we should not feel like that makes us bad autism parents.

I think back a lot to a day when my younger son, Freddy, was almost 11.  I woke that morning and checked on him, as his asthma had been acting up the day before.  As soon as I saw him, I knew he was in very, very serious shape.  Every breath was a struggle.  His chest was drawing in horribly with every breath.  We drove at top speed to the hospital, and within a minute, he was in a room being treated.  The whole day was like a nightmare.  They couldn't get his attack under control for a long time, and wound up giving him an IV of magnesium sulfate, a drastic measure.  He was admitted to the hospital.  That night, his heart rate showed signs of a possible heart defect.  I remember sitting by him as he fell asleep, still breathing with trouble.  I don't think anyone on earth would think that it was wrong that I felt sad that night, scared, overwhelmed.  Of course I had some grateful feelings---that he was being treated, that we made it to the hospital, that he was alive.  But if someone had said it was wrong for me to think "I wish he didn't have asthma.  I wish this hadn't happened"---well, I don't think most people would think that.  And I don't think most people would say that me feeling that way meant I wished I didn't have FREDDY, that I wished he wasn't himself.

However, with Janey, with autism, people sometimes do think that.  They think that wishing she didn't have autism, wishing that none of the events that autism have caused had happened, means that I wish I didn't have JANEY.  And that is not true.  That is so far from true that it makes me angry to even think about.  Autism is NOT Janey.  Autism is something she HAS.  My own personal beliefs are that autism is an auto-immune disease, in Janey's case.  But whatever brings it on, it's not a choice.  It's not how Janey has decided to be.

Another parallel between autism and asthma is that there is a huge spectrum.  There are people with mild asthma, asthma that has never required medication, that only shows itself after cold or after a lot of running.  Thank goodness, that is what Freddy's asthma had evolved into.  If you have a child with that kind of asthma, you will see it very differently than the asthma that possibly could have taken my child's life.  Janey's autism is on the more severe end of the spectrum.  I can hope and dream and aspire to many things for her, but in reality, they are unlikely.  It's very unlikely she will ever live on her own, or marry, or have children, or hold a job.  I can hope for these things, but in many ways, I think that does Janey a disservice.  It's denying who she is and what she needs to be happy.  And even if those things happen, that doesn't change the RIGHT NOW.  If I had said "I won't take Freddy to the hospital for this horrible attack, because that would be denying that he might someday live a life basically unaffected by asthma"---well, I don't think he'd have been around for the life he now leads.  Being realistic about Janey's autism lets me meet her where she is right now.

The discussion on Facebook talked about the sadness of dreams for the future being changed by autism.  I think this is a very valid reason to feel sad.  It's not unique to autism, but the level of changed dreams is what might not be understood by some people.  The term "dream" might be the issue here.  When I say I feel sad that my dreams of Janey one day marrying, becoming a mother, graduation from high school or college, getting a job will not be met---those are not really dreams.  They are well within what most of us do in life.  It seems paternalistic, judgmental, unrealistic---all those things---for anyone to say we shouldn't feel sad that our children will not do the things that most people do.  It's very different than if, for example, I'd had a dream Freddy would be a famous runner and I was sad his asthma would prevent that.  Most of us aren't going to become famous runners, and although I won't judge anyone's sadness, sadness over a dream like that not coming true isn't the same as sadness that my daughter will most likely never know the joy of being a mother herself.

The bottom line is this, in my eyes---being sad about a child's autism DOES NOT MEAN YOU DON'T LOVE AND VALUE THE CHILD.  I put that in all caps because I AM shouting it.  I love Janey as much as I could possibly love anyone on earth.  But I am sad, so often very sad, about the limits that autism has placed on her.  And I won't apologize for that.

The Terrible Day and the "What Next?" Feeling

Yesterday was a terrible day with Janey, terrible from start to finish.

Janey slept very badly night before last.  She was up at around 2 for good.  By bus time in the morning, we were exhausted.  The bus aide told Tony before Janey got on the bus that she has been crying a lot the day before.  Tony said he hoped today would be better.  We all hoped that.

I slept much of the day.  At around 1 pm, I got a phone call from the school, from one of the program heads and Janey's teacher.  They said Janey's behavior was at a level they had never seen before---frantic crying and screaming.  They took her to the nurse, but as is almost always the case with Janey, she was physically healthy.  They wondered if anything had been different at home.  It hadn't, except that we too had certainly noticed Janey had entered one of her darker periods, after a long stretch of happy behavior.  I felt like I had little to offer them in the way of ideas.

Getting Janey off the bus, I heard the driver say to her "Maybe NOW you'll stop crying!"  I asked the drive and aide if she had been crying a lot, but they didn't answer---I don't know if they didn't hear me or were just too burnt out to answer.  Janey came in and was happy for about 20 minutes.  Then all hell broke loose.

Janey asked me for a video.  I put it on.  She evidently didn't like it.  She lunged at me.  She grabbed my hands and started bending back the fingers as hard as she could---a behavior that has showed up in the last few days for whatever reason.  I pulled away my hand, and she grabbed my hair and pulled it as hard as she could.  I pulled away and she lunged again, and tried to bite me.  All the while, she was screaming a scream so loud and intense her back was arching.  I could feel that her heart was pounding very fast, and she was breathing extremely hard.

I got away from her, feeling for the first time true fear that she was going to badly hurt me.  I called Tony, and as we talked, she again lunged at me.  I was in tears.  Tony said he would get home as quickly as he could.

I gave Janey a dose of her evening medicine early, as her psychiatrist has said we could do in an emergency.  As always, she took it willingly.  She knows it calms her down, and I think she wanted to calm down.  After about 20 minutes of screaming, she was calm enough to eat, and Tony got home a bit after that.

The evening featured off and on incidents, but the worst was over for the time being.  Tony and I were drained.  Janey was not.  She stayed up until 10.  Thankfully, she slept until 4---the 6 hour stretch was the best we've had in a while.

The morning from 4 on was tough but somewhat bearable, with the two of us here.  When Tony put Janey on the bus, both the driver and aide talked to him.  Unfortunately, there is a big language barrier, and with the loud bus engine, Tony was unsure what they were saying, but it involved yesterday being another bad day on the morning bus for her.  However, they let her on, and we exhaled and went to try to start today.

The feeling I keep feeling is "What now?"   I feel like we have crossed some point---we are ready for more help.  But there isn't more help.  We did the steps we could.  I wrote to her school asking for a meeting next week, to talk about how we are all going to handle Janey, and we will have that meeting.  Tony is going to call Janey's psychiatrist today to see how soon we can see him.  But except for those two steps, we have no idea what else to do.  There is no number to call, no magical number you can call and say "Okay.  I'm ready.  I'm in need of help.  Help me."

There is support.  There is a lot of support, and without that, I would be sunk.  I thank each and every one of you who reads this blog, and your support and kindness and compassion keep me going.  I am grateful so very much to Janey's school---I know she is cared for and loved there, and I know they want the best for her.  I am thankful for my family and friends.

But help, help in caring for Janey, help that will give us some respite, help that will make a long-term change in Janey's life, help that I could have called yesterday when I felt physically scared, the kind of help that would be available so easily if what Janey had was a physical ailment---that does not exist.

I thought a lot yesterday about when Freddy had a terrible asthma attack.  We knew what to do.  We took him to the emergency room.  Within seconds, he was being helped, by a large team of professionals.  He got top of the line care, which very well might have saved his life.  He was admitted to the hospital.  He got wonderful followup care.

Yesterday, in the horribly dark moments when Janey was attacking me, I had no idea what to do.  If I had taken her to the emergency room, from everything I've ever heard and read, they would have had no idea what to do either.  There is no team of professionals rushing in to help with mental health issues.

This is a long entry, a raw one.  Maybe an angry one.  I am starting to feel anger in a way I usually don't.  What happens when you are ready for help?   Is there any help?

Janey will get over this very rough patch.  But it will come back again.  It will keep coming back.  And I guess we will keep doing what we are doing, getting by any way we can.  What else can we do?  I think the answer is----nothing else.

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 spent 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.

Thankful

Today is Thanksgiving Day in the US, and I am indeed feeling thankful.  Here's some of the reasons why---

1.  I live in the right time in history.  In the past, Janey would not be able to go to school.  We would have been blamed for her autism, or we would have been told to put her away and forget her.  Or worse.  Nothing is perfect, but I think of all the historical eras I could be living in, I've hit the jackpot with today's world.

2.  I have a wonderful husband.  Tony, I couldn't do it without you.  Literally.  I think I'd be dead by now.  You are there when Janey wakes 10 times a night, when she screams for hours, when she cries for days.  You are there for the good times, too.  You make her bacon whether she eats it or not, just because she likes the process.  You sing with her, recite Three Stooges with her, delight in her good moods.  You are amazing.

3.  By twists of luck too improbable to seem like sheer chance, Janey is attending exactly the school I would have dreampt up for her, had I been dreaming up a school in my head.  The Henderson Inclusion School is something I am extremely, overwhelmingly thankful for.

4.  Janey has two amazing brothers, terrific young men who love their sister, who help me with her, who have fun with her and just treat her like a sister should be treated, with teasing and laughing and fun.

5.  I am so thankful for music, and for Janey's love of it.  The whole day is often filled with song, surprise tracks of pieces she's heard long ago and old favorites mixed together to make a medley I love to hear.

6.  Modern medicine.  I have all the questions and concerns and worries about it that most of you probably share, but when it comes down to it, I wouldn't be here to have those concerns without it.  I'd have died long ago from preeclampsia when pregnant with William.  Tony wouldn't be here without insulin.  Freddy would be here without the magnesium sulfate and skilled care that got him through a potentially deadly asthma attack as he turned eleven.  And Janey, without the medications I love to hate and hate to love, would not be able to be making the strides she is, I do believe.

7.  All of you, and the internet that allows us to connect.  Even twenty years ago, I would be alone in this all, maybe having met one or two other families ever with autistic girls.  Today, I can reach out and talk to many, many people about this tough journey, people that understand and have been there.  That's pretty darn amazing.

8.  And of course, I am thankful for Janey herself.  Janey, you are one terrific girl.  You are beautiful, fascinating, mysterious and so often, a joy.  You have brought me many challenges, but you yourself, you amazing girl, you make it all worth while.  I love you, Janey.

Respite Day

Janey went today to a respite program from 10-4, during which time they took the kids to the Children's Museum.  I was very, very nervous about sending Janey, but it appears the day went well.  I talked to Janey a lot about where she was going, and we had visited the respite house recently, so I think she did remember.  She woke up in a great mood, and was eager to go, and looked very excited when we got there.  We stayed about 20 minutes, to make sure she was settled and to talk to a few people there about her being a runner, and the arm biting.  Then we kissed her goodbye and took off.  When we picked her up at 4, she was still looking super happy, and we were told she had a great day, and only got upset and arm biting once in the van, and they put on a video and she was happy again.  She wouldn't eat her lunch, but she never eats much except at home.  So, overall I'd say the day was a success!

The respite house has Saturday programs 3 out of the 4 Saturdays in each month, but a lot of them are not ones I'd send Janey to, because I don't think she'd get much out of them or I don't feel comfortable with them.  For example, next week they are going to a water park.  I can't quite picture Janey at a water park---the risks if she ran off are just too much, and I am not a fan of water parks in general.  The chlorine in the water can be a huge trigger for asthma.  Janey doesn't have asthma, but Freddy does, and his worst attack was after a day at a water park.  He was in the hospital for 3 days.  I decided after that we won't be water parking again!  There's a vacation week camp too, for when summertime school ends, but a few of those days are boat tours, another thing I'm not sure I'm ready for Janey to do without me!  But I'll be thrilled if she can go to the program once every few months or so.  That's probably all we can really afford, and it will give her a fun day and us a little rest.

It was strange here without her!  We all realized she's the center of our lives.  It felt kind of empty without her, although I think we could get used to just a tiny bit more time with just the boys now and then!  But today, the boys had a big fight, which is not really like them, and we all were a little cranky.  And I got sick---a sudden weird sickness with a high fever.  The fever is less now, but it was bizarre. So I spend most of the day, and the evening, in bed.  I've read other people say that once they finally got a little break from a child with special needs, they really missed the child, and even though Janey was gone a shorter time than a school day, having the rest of us home made it feel odd.  Maybe part of that is we try very hard not to sound upset or even impassioned around Janey, as she gets upset if she thinks we are upset, even if we are not, just loud and emphatic!  So without her here, we let out some long held in tension.

I'm glad I tried the respite.  I know I'll do it again.  I have a few concerns, such as the staff seeming a little disorganized (although very sweet and good with the kids) and not being sure who was in charge, and there being no sign-in sheet, but the most important thing about respite is that they keep Janey safe and happy, and that seemed to be the case!

On tiredness, autoimmune issues and autism

The last month or so, a doctor's appointment I had yesterday was hanging over my head.  I had a lot of blood tests a while ago, to try to figure out why my liver function is always a little compromised.  One of the tests done was an ANA test.  I don't know all the technical terms, but I know it's a test done for autoimmune disorders, and I know over the years I've had it done quite a few times, because of the severe preeclampsia I developed during pregnancy and also because of my thyroid issues.  It's always been negative until this last time, when it was positive.  The breakdown of what exactly was positive showed I might have something called scleroderma, as well as Sjogren's syndrome.  I of course did what I do, and started researching them a lot, and convinced myself I did have scleroderma, and dreaded the appointment as I felt it would confirm that.  However, the doctor said she had quite a list of autoimmune diseases she thought I might have, but scleroderma was low on the list.  She did think I have Sjogren's syndrome, which mostly just causes dry eyes and a dry mouth.  She ordered a bunch more blood tests and an echocardiogram, which I had yesterday.  So now I'm waiting for the blood tests.  Because I just love to self-diagnose and scare myself, I figured out from a few things she said and the questions she asks that she probably thinks I have lupus, which has been suspected in the past but the negative ANAs in the past always ruled out.  I have the facial rash which is characteristic.  But I don't know yet, and I shouldn't worry about things I don't know about.  But I do, of course.

I write all this not to ramble about medical issues, but because to me it ties into autism.  If autism is a type of auto-immune syndrome, or if that is one of the causes, then Janey certainly comes by it naturally.  In addition to all the things I have or think I have, our family history features tons of diabetes and asthma, plenty of thyroid issues and thyroid cancer, Raynaud's syndrome, among other auto-immune fun.  It makes the most sense to me of the various possible causes of autism that in Janey's case, she developed autism as an autoimmune response which affected her brain.  I think autism has multiple causes, and I don't think everyone  with autism got it that way.  It's like saying someone has a fever, or wheezing.  You can get a fever or wheezing for lots of reasons.

The main way I think I'm being affected by whatever it is that is affecting me is tiredness.  I tried to explain to the doctor yesterday what this kind of tiredness is like.  It's not like how you feel when you don't get a good night's sleep, although I get that kind too.  It's a toxic kind of tiredness, a feeling that if I don't lie down and nap, I will pass out. It hits me with a huge force.  I can't possibly keep from sleeping when it hits.  Over the past few months, I've given in to this more.  Naps used to be my guilty secret.  I felt like I had to hide the fact I need a nap every day.  Now, I am allowing myself to work it into my regular day.  I need to nap an hour or two each day to make it through the day.  Extreme tiredness is a huge part of lupus and scleroderma, and other autoimmune diseases, and that makes me feel a little less guilty about it.

If Janey didn't go to school, and after-school, and summer school, if I didn't have Tony on weekends, I don't think I could make it.  Days I've been home alone with her, when the nap urge hits, it gets scary.  I try to avoid that at all costs.  If I can't, I barricade the living room as best I can, put Janey on my lap, put on the TV to a show she loves and catnap, waking every minute or so to make sure she's okay.  That doesn't really give me the rest I crave, but it's the best I can do.

Autism doesn't exist in a vacuum.  We all have other issues in our lives and our families besides autism.  It's why autism respite is SO important.  If I were a single parent, or if Janey had a shorter school day or no summer school, I don't know what would happen.  She would be endangered, and so would I.  I hope the supports I have stay in place.  But I feel for those without such supports, and I worry about those families.

Puzzle Piece Autism Symbols

Recently, a friend mentioned seeing someone with a puzzle piece necklace, which he found out was a symbol of autism support.  It set me thinking about the puzzle piece symbol, which I see more and more---on car magnets, in jewelry, on signs---all over.  And it made me wonder why I have no desire to wear the puzzle piece in any form, or put it on my car, or, to expand, to make it my Facebook picture or, to expand even more, why I am not a more vocal advocate for autism, outside of this blog.

On a very basic level, I don't wear autism jewelry because I don't wear any jewelry, except my wedding ring.  I am not very good at accessorizing, to say the least.  I don't wear jewelry, I don't wear makeup, I don't dye my gray hair, I don't dress very snazzily.  I'm just no good at those things.  I wish I were, but despite having been "made over" many times, I wouldn't have the slightest idea how to put on makeup, or how to put together a good outfit.  I let my pierced ears grow back years and years ago.  You are lucky if you see me with my hair in a pony tail.  That's about how far my fancying up goes.  I've always wondered if it's my own disability---the inability to coordinate, to be fashionable, to do the basic things like makeup or nails that seem to come naturally to every other woman on earth.  It might go along with my horrible handwriting or general messiness.  There are parts of my brain that just don't seem to completely be with the program.

But on a deeper level, there are probably other reasons I don't wear autism symbols.  Part of it is a lack of wanting to draw attention to myself.  If I wear a symbol that not everyone recognizes, it would lead to questions, and questions would lead to explaining.  For someone that likes to blend into the crowd most of the time, that's not a sequence I'd like.  But another part of it is a stubborn feeling that I don't want to make autism my signature cause, my main point, the center of my life.  My friend that saw the puzzle piece had a good theory on that---that in a way, I'm practicing autism acceptance.  If I were to point out the autism part of my life constantly, it's not integrated into my life.  It's not accepted as any other part of my life.  It is pointed out and stands out.  I want Janey, and autism, to be a regular and normal part of life around the community, not a cause.

I also am always aware I have three children, not just Janey, as well as a husband and other family.  My boys both had asthma, which Janey thankfully does not.  Freddy still has it, and is a survivor of an extremely serious attack he had as he turned 10.  Tony is an insulin-dependent diabetic.  I have a non-functioning thyroid, and am a pre-eclampsia survivor.  William was a preemie. My sister is a cancer survivor.  There are other health issues that I have very strong feelings about, and if I wore symbols of all of them, I'd probably be a little gaudy looking.  To single autism out feels wrong to me.  It affects our lives greatly, but it is not life-threatening, thankfully.

And yet, I feel a sense of kinship when I see someone with a puzzle piece worn.  I feel connected when I see a car with a puzzle piece magnet.  I am glad there are others out there with autism in their lives, and I am happy to see the symbols of that community.  I guess it's a case where everyone shares in a way they feel best about sharing.  I write this blog to share with and connect to the autism community.  Others advocate more publicly, and work harder to educate the wider community, the community at large.  Others are at a stage where they are concentrating completely on their own child with autism, and that too is completely understandable.  Having a loved one with autism doesn't make us all the same, and we all do what we can do.  That's the only way to get through the autism life, and in fact, life in general.

Happy Valentine's Day, autistic parenting style

Tony and I were married just a little over a year after meeting each other.  In that time, we discussed a few things about what we wanted out of our marriage, mostly to do with kids, but even if we had dated for 30 years, I don't think everything that actually has happened with us would come up.  Sometimes, we talk about our first kiss, and if somehow we had been able to see then into the future.  Would one or both of us have bolted?  We didn't see it all coming---the terrifying pregnancies, twice hearing that autism diagnosis, watching  Freddy struggle to breath more than once, caring for Tony's increasingly sick parents, seeing friends and family members die, the money struggles that never quite seem to get better, our own illnesses and conditions---the insulin shots, the thyroid woes, the high blood pressure and asthma and on and on, the days where Janey screamed for hours and hours on end while we helplessly tried to make her feel better, the struggles and cares and worries that married life has brought us.

And yet, I think I'd do it again, and I think Tony would say the same.  Because for all those moments, there have been moments that were better than we ever guessed life would be.  There's the times we all have laughed as a family until we cried.  There's the pride we have felt watching our boys grow up to be more than we ever, ever could have dreamed of.  There's the joy in our beautiful blond daughter, singing a song that fits the moment exactly.  There's the love we still have for each other.  Tony looks better to me today than he did that long ago first kiss day.  He's grown into a man that I think any woman would be lucky to be married to---a wonderful father, a fantastic cook, a caring husband---a terrific man.

Autism tries a marriage to near the breaking point often.  There are days when Janey has been screaming all day and Tony comes home and I lay into him, screaming at him for nothing, because I've held in the screams. There's the times we fight over petty things, when the fights are really pent up frustrations with the limitations autism has put on our lives---the lack of time alone, the lack of relaxed family time, the endless needs of a toddler in a 8 year old's body.  Autism and its trials have not always brought out the best in either of us.  But despite all that, I don't think I could find someone I'd rather go through all of it with.  I hope Tony feels the same way.  We need each other, more than most married couples need each other.  We literally could not do this alone.

I love you, Tony.  Happy Valentine's Day.

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.

Socks and the Chips Store

Lately, I've been having an even harder time than I usually do finding matching socks for Janey. I swear I can buy 100 pairs of matched socks, and within weeks, I have 100 socks, none of which match each other. It's a mystery. But it's been getting worse and worse, and I think I figured out why. Janey keeps bringing me a couple socks and handing them to me. It's her way of saying "Let's get going!" She much prefers bare feet, and has figured out that when socks get put on her, it's time to go someplace.

And the place she wants to go all the time? The "Chips Store". The chips store is the CVS on the way to and from Janey's school. It's where we occasionally stop for Janey's treat---which is usually a can of Pringe's Salt and Vinegar Chips. It's something I'd do usually on a Friday, as an end of the week treat. Last week, because Janey asked so clearly and nicely, and because I needed something else there too, we went on something like a Tuesday. The next day, Janey again asked perfectly, saying something like "I want to go to the chips store. Can you say Please?" and I couldn't resist. Then a third day last week, I needed to pick up books at the library across from the CVS, so I told her if she was very, very good while I picked up the books (which she often is not---libraries bring out her urge to scream and throw things), we would go to the chips store. She was great in the library, so we went.

And of course, I've created a monster. She wakes up and the first thing she says to me is "Go to the chips store". She brings me socks, and sometimes for further emphasis, my pocketbook. She gets herself dressed as much as she can. She pulls out all the stops.

And that is fine, except I don't want her to have a can of chips a day. The medication she is on can cause weight gain, but hasn't in her at all yet. I worry about weight issues as Tony is an insulin-dependent diabetic, as are most all the members of his family. They have a hugely genetic form of Type 2 diabetes, which hits them hard. Despite all Tony's hard work, he is going to have to start having more shots a day and more testing. It's the auto-immune issue popping up again---my favorite autism theory. I have autoimmune thyroid disease, Freddy and I both have asthma, another auto-immune disorder---it pops up on both sides of the family all over.

I wish I could find something else Janey loves as much and is as motivated by as the chips store. She is not like some kids with autism, with huge obsessions with certain topics or foods or items, although she gets crushes on things for a while, like Funions or certain songs. But the chips store is showing me the power of her increasing ability to make connections and plans. She is thinking ahead---"I need socks on to go to the chips store". She is controlling her behavior---"I need to be quiet in the library if I want to go to the chips store" She is using speech to actually ask for the store. It's pretty cool to see. I wish they sold very small cans of Pringles---we'd go every day!

Happy moments but also asthma

Freddy's asthma has been acting up a little. He is the only one of the three that's never had an autism spectrum diagnosis, and not co-incidentally I am sure the only one I had a normal pregnancy with. He nursed for 2 1/2 years also. But despite all that, his physical health is much worse than William or Janey. They are both rarely sick and seem to have strong immune systems, but Freddy got sick all the time as a little guy, and now has fairly significant asthma. We learned to really take it more seriously this past summer when he wound up in the hospital for two nights with a terrible attack. Now he is on 2 daily medications and 2 more as needed. He needed them lately when his peak flow meter showed he wasn't moving air well, and he was coughing a lot. I kept him home from school for two days which made him very angry. He is very sociable and hates to be kept home. But he couldn't promise me he would take his medication every 4 hours at school, although it's there and he has blanket permission to use it, so I couldn't let him go. I think he doesn't like to be set apart by having to take it. I talked to his advisor about it yesterday and I think we have a handle on it, and his peak flow was better today. I have probably gone from not taking it all seriously enough to taking it too seriously, but that is what an extremely scary time in the hospital watching them trying to help him breath will do.

But yesterday felt happy too. Janey had a show at school, their school does a very lot of music shows starting with the littlest kids. I didn't want to take Freddy out, so Tony came home to take her to school and see the show. My happy moment was dressing her up for it. It was somehow one of those moments where parenting is exactly how you once pictured it. I put her in a jumper dress and a turtleneck and tights and cute shoes, and her hair is long and with no bangs, back in a pony tail, and she looked so wonderful. She was in a very happy mood, and just the last week or so she seems to have changed from a toddler type to a little girl. I couldn't stop looking at her and crying a little. In some ways this is all my dream life, having a sweet little girl and two interesting and fun and smart boys and just watching them grow. I have to let myself forget all the not good parts sometimes and just be grateful for what I have.