The start of the next part

Since I last wrote, a big change took place in our lives.  Tony retired from work, 30 years to the day after starting federal employment.  He is 56, so this is a fairly early retirement.  Having him retire early was a huge decision, mostly for financial reasons, but it was the right decision, I am quite certain.

On the day Tony retired, a thought kept running through my head---"The hardest part is over now".  That's where the title of this post comes from.  Of course, I knocked on wood, and of course I know that there are still going to be many tough parts of life.  But from now on, there are two of us to care for Janey.

The smile of a man 5 minutes into retirement!

About a week after Tony retired, I looked at him and realized he truly looked about 10 years younger than he had for the past few years.  Mothers get all the glory and sympathy often in this special needs parenting game, but it's hard to overstate all Tony has done over the years.  Especially the past few years, he was working a job that was extremely stressful.  He woke very early every morning, helped me get Janey off to school, went to work all day, came home, took over with Janey usually, took her for car rides and made her supper, then had to go to bed when she did so he could get up and do it all over again.  He often went days without any time to himself, save maybe his time on the train.  He did all this while dealing with a serious health condition (severe type 2 diabetes---he's been insulin dependent for many years).  Tony's brother lives upstairs from us and is increasingly disabled from the complications of diabetes also, and Tony helps him a lot too.  When Janey didn't sleep, often Tony didn't sleep, and there were so many days I simply didn't even know how he got through the day.

Financially, retiring this early is not going to be a piece of cake, but that isn't something we find nearly as important as our health and happiness.  As long as we can eat, have health care and have a roof over our heads, the rest is gravy.

I've often thought of how in cartoons, characters run off cliffs, but keep going along just fine until they realize they have gone off the cliff.  That's how a lot of our life the past few years has felt.  Not everything is within the scope of what I write about here, but suffice to say we've been running on fumes a lot of the time.  Despite Janey being our joy, our delight, despite her being far happier than she was during some darker years for her, the demands of special needs parenting are always there.  That is something it can be hard to explain to those who haven't lived the life, and can be seen as a complaint, as something I shouldn't mention because I should only emphasize the joy.  But I want to speak the truth here, and the truth is that it's hard.  It's very hard.  It's very hard having a child that will never, ever care for herself, that needs supervision that realistically only we as parents can safely provide when she is not in school, 24 hour, 7 day a week supervision, and that this will be forever.  I know my dying thought will be of Janey, of her happiness and safety.

And so we start the next part.  The next part has been good, so far.  It's the little things that are the most surprisingly special.  On the 2nd day Tony was home, after Janey went to school, after a long night when she didn't sleep well, we went back to sleep after she got on the bus.  We slept in until 10.  We woke up astonished.  It was the first time ever we have slept in together.  Ever.  Last night, we stayed up to see our beloved Red Sox win the World Series.  We didn't have to think for one minute that we should be getting to sleep.  We knew we could rest a bit today.  Those kind of moments are worth the change in income.  They are the kind of special small things I think our new life will include a lot of. 

And most importantly than anything, it's wonderful to see the joy having Tony home gives Janey.  Afternoons when she got off the bus were always a very tough time.  Now, Daddy greets her, and right away cooks her whatever she wants to eat.  Together, they blissfully eat things I wouldn't touch---fried eggplant, steamed greens, tuna salad---and Janey dances around with happiness. 

Here's to you, Tony.  We made it to the next part.

Sickness and good news

Tony keeping Janey entertained as we wait for the orthopedist

First, the good news!  We took Janey to her appointment with the orthopedics department at Mass General.  They said she does have scoliosis, but it's mild enough that we can just wait and see for now.  They said more than a 10% degree of curve means you have it, but it's only at 25% that they start doing bracing.  She's at 12-15% right now.  So we go back in 3 months, and hopefully, things will stay as they are or get better.

Janey was out sick on Monday and Tuesday from school.  She had a cough and cold, nothing severe, but enough to keep her home.  She rarely gets sick.  Of course, she had the Big Sick with the burst appendix last spring, but her staying home for a little sick day has hardly ever happened.  She was in a pretty good mood, and we had a couple of quiet days at home (except for the appointment!)  By Tuesday afternoon, she felt a lot better and was restless.  It seemed like one of the first times I've seen Janey bored, although she doesn't have the words to say that.  But she kept coming up with ideas---"go outside to see Daddy!"  "go for a walk!"  "take a shower!"  She wanted to see Daddy when it was hours from the time he comes home, but we did take a little walk in the bizarrely warm December weather, and she had two showers.

Today was back to school, but the bus never showed up.  Tony had told the driver she'd be out until Wednesday, and the driver said "Okay, see you Wednesday", but somehow, no-one showed up today.  We've had a great driver this year, so we were surprised.  Janey was not happy.  She kept saying "Want to go on the bus?  Want to go on the bus?"  Finally I came inside and checked the GPS tracking, and saw the bus was at her school.  I had already tried calling the hotline for buses, and h ad been on hold for about half an hour, so I called the school, but was told I'd just have to call the hotline.  I then called her teacher, and asked if somehow a message could go to the driver that we hoped tomorrow he'd pick her up.  I called the hotline again, and this time got someone, who said basically "Oh,  yeah, they didn't get her.  I don't know why"  Very helpful.  So I drove her to school, although now the illness had hit me and I had been up most of the night with a sore throat.  Complain, complain, I know!  Janey did well with the change of routine, and it was nice to get to see her teacher and an administrator of her program I've known for a long time who had been out on maternity leave.

I asked on the Facebook group page about other girls with autism and sickness.  It seemed like a mix---some girls get sick a fair amount, but others are like Janey and rarely get sick.  The ones that rarely get sick seem to have a very high pain tolerance, as I think Janey does.  I've seen that pattern with a lot I've read about autism---either a child is sick all the time or hardly ever sick.  I think personally it has to do with autoimmune issues, which is my working theory as to what probably caused Janey's autism.  I think she has an autoimmune system on high alert all the time, so much so that minor illnesses never see the light of day, and that at some point, this affected her brain.  But I am no doctor, and I don't believe in any one cause of autism.  I think that's the case in Janey's particular situation because our family is riddled with autoimmune disorders.  Almost everyone on either side of the family has at least one---diabetes, asthma, Raynaud's Disease, thyroid cancer ---and I have been suspected of having several---Sjogren's Syndrome and early stage scleroderma, in addition to whatever stopped my thyroid from working.  So Janey would come by it naturally.

In speaking of sickness, I do worry about what would happen if I ever became chronically ill, from an autoimmune syndrome or something else.  I don't think I will, but if I did, or if Tony's diabetes became worse...that's a scary thought.  Janey has no understanding of anyone else's illness.  She counts on us being healthy and able to help her.  It's part of a house of cards situation.  If either of us weren't able to care for her, I just don't know how it would work out.  We deal with that worry by just hoping it doesn't happen.  When Janey gets off the bus in a little bit, my sore throat and low fever and aches just need to go to the background.  There's no other choice.  And of course, somewhere in my mind is always the thought that someday, Tony and I will be gone.  That is the black hole of thought, where I just can't go.  What happens then?  To keep living our daily life, we have to put aside some thoughts and just keep on keeping on.

So---I'm off to have some tea and Motrin and await my sweetheart's arrival home.

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.

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.

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!

Three hardest things, three best things

I got this idea from another person's post I read recently---what are the three hardest things and the three best things in my life?

The three hardest---well, number one would be autism. I hate autism. Autism is not Janey, any more than diabetes is Tony or thyroid disease is me. Autism for whatever reason hit my little girl hard, and won't let go. I hate it.

Number two would be not having the funds to do everything I'd like to do for Janey. I don't crave money for myself much, I can honestly say. I'm not someone who wants or needs what money can buy much---I've often thought if I had money for a mansion, within days it would be run down and messy and I would like it no better than my house now. But when I can't do something for Janey because I can't afford it, or worry about the co-pays, or just know it will stretch the budget to breaking point, that is hard.

Number three---tiredness. How I'm always, always tired---partly a result of Janey so often waking in the night, partly because I'm on edge so often, partly due to a thyroid that doesn't work much at all, some because I have insomnia often, partly because I'm overwhelmed. If I had more energy, I could do a lot better for my family.

And the three best things? Those are easier than the worst things!

First, my family. My husband, who is 100% totally a family man, my sons, who are two of the most amazing kids in the world and my beautiful, fascinating daughter.

Second---life's little pleasures. They don't get enough credit. That first cup of coffee in the morning, the word games on Facebook, a comfy bed when I'm tired, the first feel of fall in the air, good television, of course and hugely books and reading, a great lawn sales, a long talk with a good friend on the phone---lots more. At this point in my life I'm not going to be having a lot of life's BIG pleasures---fancy vacations, brand new cars, elegant meals out---but I've got more than my share of the little ones.

Third---the luck of living in this place and time. I know how lucky I am compared to so many people in this world, and so many time periods in history. Even 50 years ago, Janey would probably not be able to go to school at all, instead of going to the amazing school she does. Heck, 100 years ago that wouldn't be a problem, as I would be long dead from my first pregnancy, Tony would be dead from diabetes, Freddy would have died from the terrible asthma attack two years ago---we'd be a whole section in the cemetary. I try hard to keep in mind that chance of time and place have made me very, very lucky.

And now to try to sleep!