Back from the end of my rope

Last week was school vacation week here in New England.  It couldn't have come at a worse time.  Janey had been in a mood for a few days when it started.  She was on edge, screaming much of the time, not happy at all.  Then, the first weekend of vacation, it got extremely cold, the coldest it's been in Boston since 1957.  It wasn't the kind of weather we could get Janey outside in.  She was displeased.  She spent a few days switching hysterically from one video to another, screaming when we didn't immediately understand her, biting her arm and generally being very, very unhappy.

I had planned for quite a while to get away for a few days during the vacation week.  Tony had taken the week off work, as it's been a traditionally very hard week for years.  I was planning to go up to Maine and visit my parents on Wednesday, and then Friday have a long-awaited special treat getaway weekend at an inn as a early birthday gift from a dear friend (thank you, Julie!)  I was (and am) looking down the barrel of, let's just say, a milestone birthday, which would have been stressing me without any tough Janey times.  And I kept thinking---I can't go.  I can't leave Janey here with Tony alone.  But on the other hand, I kept thinking---I have to go.  I NEED to go.  I felt at the end of my rope, hanging on by a single thread.  Each time Janey screamed, I tensed and felt waves of stress and despair wash over me.  I felt like I couldn't take one more second.  But I kept telling myself "I can't go.  I can't leave Tony to deal with this"  Tony, who I will right now nominate for husband and father of the year, kept telling me I should go, that he would be okay, that he'd manage somehow.  It's hard to even explain my state of mind as I tried to decide.  It wasn't sane.  But finally, after getting Tony to promise that if it was too hard, he'd call and I'd come back, I did go.

And Janey was fine.  Not perfect, but fine.  She often seems to do a little better when it's just one of us with her, because all the attention is focused on her, we think.  Tony took her for lots of rides, changed her videos as demanded, and slept when she slept.

Janey views the sunrise

It took me a little while to calm down once I left.  I took a bus to Portland to meet my parents, and the bus ride helped.  I sat and decompressed, and played word games.  By the time I reached their house, I was much, much better, and by the next day, I felt great (although I woke with a horrible headache, probably from all the days of stress)  It was great to have a few days with my parents, and then a few days at an amazing inn with my friend and her fiancee.

Crescent Beach, Cape Elizabeth, Maine

Tony and Janey came up to the inn on Saturday night.  Tony got a chance to relax hanging out with the friends, and I took care of Janey, and by the time she got there, I was looking forward to seeing her very much.  I felt able to cope again, to think of ways to keep her distracted and happy.  We had several showers in the room's huge shower, baths in the big bathtub, we walked to the empty beach at sunrise, we spent time at the bonfire outside in the evening.  We had fun, because I was able to relax enough to have fun with her.

I learned a lesson, one I've tried to learn before, but I think this time it really will stick.  Sometimes, I really do need to take care of myself to be able to care for Janey.  I don't need to be a martyr to care for Janey, to love her.  We don't have a lot of respite, but Tony and I can switch off at times and allow the other party to get a breath.  And Janey will manage.  The toughest times don't last forever.  They come and go.  And I am much better able to to be a creative, patient mother if I am not at the edge of the cliff.

Now, to face tomorrow's birthday and the start of being AARP eligible.....

The Month That Wasn't

It's been a month today since the day that I got the call from Janey's school, the call that they were calling an ambulance to take her to the hospital.  It's been a month that in many ways, I would like to erase from my life.  In other ways, it's been an important month---in some ways, even a good month.  But I think it's fair to say I hope I never have another month like this one.

Here's a little synopsis of the month.  Janey's behavior, which had been escalating for a week or so, got even worse on November 14th.  I rode with her as she went by ambulance to Children's Hospital in Boston.  In the emergency room, she was assessed and it was determined she needed hospitalization in a psych ward for children.  There were no appropriate placements available right way, so we spent 6 days at Children's as boarders, waiting for a placement.  We got one after those 6 days at Bradley Hospital in Providence, and Janey was there for 18 days.  She came home after that, when they felt she was stable enough to leave.

Those are the bare facts, stripped of emotion.  Here's some of the emotion.  The stay at Children's was hell.  I can never think of another word to use for it.  The 28 or so hours in the emergency room were the deepest, darkest levels of hell, and the next 5 days in a room on a kidney transplant ward were regular hell.  Janey wasn't able to leave the room, was periodically attacking the nurses, the sitters who sat in the room and me.  She screamed extremely often, asked frantically for one thing after another we couldn't do, and slept poorly.  I don't think I'd survive another 6 days like those.  The stay at Bradley was in some ways a relief and in other ways not.  The drive to Providence was often very, very tough, both in terms of traffic and in terms of giving us time to think what we were doing---visiting our precious daughter in a locked psych ward.  The visits with her were both wonderful, because we missed her so much, but also awful, because in what was a theme for the month, we were not supposed to leave the room with her, and she would quickly become bored of us and restless.  It would become a situation where either we saw her for far shorter than we wished or we risked setting her off into a spiral of a meltdown.  Having her home, although joyous, led us to see nothing had really changed.  Janey has been often very unhappy the 5 days since she's been home, although there have been good times too.  A few days ago, she attacked my father, in a frightening repeat of what started this whole time.

What has been good?  Well, we got a letter yesterday saying we had been approved for state supplemental insurance for Janey, so going forward, we might be qualified for help with therapy and things like pull-ups.  I need to work on getting that all set up, but it's something we probably should have done years ago.  Janey is off two of the three medications she had been taking, and we are seeing some improvement in her talking, which leads to the upsetting thought that she may have been overmedicated for a while, but in trying to be positive, also means she might be no longer overmedicated.  And the greatest good part--the absolutely overwhelming and incredible support, in so very many ways, from all of you, all my friends who read this blog---those I know in person and those I know through the magic of the internet.  You are a wonderful bunch of people, and you let me live through this.  I mean that with all of my heart.

What are our fears?  We have many fears.  The biggest is that Janey is going back to school tomorrow, if everything goes well.  Her school has been wonderful, and they are eager to have her back, but we truly feel everything might repeat itself.  I have no confidence Janey is going to be able to not repeat the behaviors that started all this.  We have realized places like Bradley are not set up to change the future.  They are set up to deal with children in crisis, during the crisis, and they do a outstanding job with that.  But they are not set up to change the child.  I am not sure it's possible to do that, to be fair to them.  I don't think I'll ever relax again while Janey is at school.  I will always be waiting for another call like that horrible one a month ago, a call saying she is out of control and they think she should be in the hospital.

I will close with right now.  Right now, Janey is happy.  She is having bacon that Daddy is making---bacon made by the best father in the world.  We are looking forward to getting a Christmas tree today.  We are together, our older son William will be home from college soon, and we will celebrate Christmas and look toward 2015 with hope.  And that is enough, for right now.

Thanksgiving 2014

It's hard to remember too many specifics from Thanksgivings of my past.  Thanksgiving isn't usually a day that stands out in memory---the best Thanksgiving seems like the ones before it, in a good way. However, I don't think I'll ever forget Thanksgiving 2014---waking up without Janey here, driving to visit her, coming home without her.  I also won't forget it because of how grateful and thankful I feel.

It was strange to wake up this morning to a house without Janey, as it's been strange for the last week. Everything seems oddly quiet and calm, and I have been waking up after sleeping all night long, something that has rarely happened in the last 10 years.  I miss Janey horribly in the morning, though.  It feels wrong to have her gone.  I have my morning coffee, but somehow it feels unearned.  I've cut back to one cup most days, which is a huge cutback.

Freddy went to see his last Thanksgiving Day football game as a Boston Latin student, and we had a non-eventful morning---no kids TV, no Janey asking for bacon, no monitoring her movements and anticipating her moods.  I am trying hard to accept the respite and to let myself enjoy it, knowing she is safe and cared for, and for brief periods of time, I am succeeding.  But it's been so long that our life has had her as a focus, everything feels a little empty.

We had a Thanksgiving meal for 4 around 1.  We are not big eaters of traditional Thanksgiving Day fare---we had a roasted chicken, but with purchased turkey gravy, and some strawberry shortcake.  We said what we were all thankful for, but didn't have Janey to coax to say something.

After we ate, we drove to Providence to see Janey.  Every time we get to the hospital, I feel a knot in my stomach.  It's not because it's not a nice place, because it is.  I think it's just the feeling of going to see my child at a psychiatric hospital.  It feels like I have somehow stepped outside of the world I know, and entered a different world.

Janey was very happy to see us, all four of us.  She hasn't seen William for a long time, since he was at college.  She gave us a huge smile, and we went to her room.  We had brought her lots of food for her special meal, and she ate a huge amount of Daddy's pesto, some purple onions and lots of chocolate chip cookies.  We sang to her, and played catch with her Care Bear.  She talked very little today, but seemed very pleased we were there, at first.  Eventually she got tired of being in the room and eager for more action, and when we asked her if she wanted us to say goodbye, she repeated emphatically "GOODBYE!"

We took her out to the staff people, who said they would take her to join her group in the occupational therapy room.  Janey had gotten a bit agitated by then.  She kept grabbing our hands and saying "Take a walk!"  We explained we couldn't, but her friends there would take her for a walk.  She started yelling "Goodbye!  Goodbye" but trying to go with us.  The staff distracted her, and we said a final goodbye and left.  My heart was a bit torn up.

And now---Thanksgiving night.  I am going to try to rest and not worry.

It has been a strange Thanksgiving, but it has also been a very good one, in that I know more than ever how much I have to be thankful for.  I have my family---my husband, who has been incredible through all of this, my wonderful boys and my Janey---my girl who has my heart, and both warms it and breaks it so easily.  And I have my friends---and I count all of you reading this as my friends.  You have been INCREDIBLE.  Your support, here and on my Facebook page, is what has kept me going many a long day.  You have made me feel like sharing my story has helped YOU, when it is YOU who has helped me.  My dear friend Jamie has reached out to get help for me with bills and expenses---something I never, ever expected but I am very, very grateful for.  I have talked to many of you, in person, by phone or by email or Facebook message, and you have supported me so hugely.  So many people I've never met in person have shown their caring for my family and me.  I know more than ever that there are so, so many good and caring people in this world, and I am very thankful for that.

I wonder what Thanksgiving 2015 will look like.  I hope Janey is happier, calmer and most of all we are all together, that Thanksgiving and every Thanksgiving from here on for the rest of my life.

The day it all hit me

It's funny how the mind and body work when you are in the middle of a crisis.  There must be some kind of system that kicks in that lets you keep going when normally you would have collapsed on the floor, overwhelmed.  That system was in high gear from last Friday until yesterday.  It's not that I didn't cry some or feel exhausted, but I was functioning.  Last night, the system wore out and I was hit hard.

I was okay yesterday morning.  I did housework and laundry and dishes, enjoying the feeling of doing everyday work again.  We drove to Providence to see Janey midday.  Freddy came too, to see her in the new hospital.  The drive went quickly---we are figuring out new routes to take, and it's a pretty straight shot to drive there, although a long straight shot.  We are starting to know the routine, how to check in, what not to bring into the hospital, where the long locked halls lead, all that.

Janey looked well cared for, which was great to see.  Her hair was clean and brushed, and she was dressed in her nice clothes.  She seemed much quieter, calmer overall.  We visited with her in her room, as we are required to do.  She seemed happy to see us.  We brought her her toy Olivia and Beanie Baby style My Little Pony, and we played with those a bit.  Then I sang her some Christmas carols, letting her choose what I would sing next.  She looked at me with the look I only see when she is totally overcome with music---a look of wonder and amazement, as if she can barely believe the perfection of the songs (not my singing!)  When I sang "O Little Town of Bethlehem", she kept repeating the line "yet in thy dark streets shineth" and I sang that part over and over.

After a while, she was getting restless and started asking for the kind of things she asked for in the hospital, over and over..."Want to take a shower?  Want to watch Olivia?  Want bacon?  Want take off socks?"  We realized it was probably time to go, before she got more upset, and we told her we were going to say goodbye.  She said "Put on shoes?  Go to Mama's house?"  If there is a moment when a parent has their heart broken, that is it---when your ten year old daughter, in a locked psychiatric ward, asks for you to take her home.  I hope I never again feel what I felt that moment, and I hope none of you ever have to feel that feeling.

We took her back out to the ward---the area they seem to spend weekend days in, outside her room.  I won't write much about the other kids there, because it is not my story to tell and I respect their privacy, but I will say Janey was the only girl I saw, and also the only child that seemed to talk.  She stood out, as it feels like she has done all her life.  I wish so much sometimes I could gather all the girls together that I have met through this blog, that we could get our girls together in a room so Janey for once could have peers like herself.  Maybe someday that can happen.  But for now, it so often feels like Janey is very alone.

After we got home, I did mindless things---watching some Star Trek, reading, knitting.  Tony was working on a long, long application we have to do to try to get state supplemental insurance for Janey, to help with the bills that will soon start rolling in.  At one point, he asked me for a little information for the form.  I found I couldn't answer.  I couldn't think.  I couldn't put together simple sentences.

Tony quickly realized what he was dealing with.  He stopped asking any questions.  He made me some hot chocolate, and then, a French bread pizza.  He comforted me as I collapsed into my bed, crying and crying.  I am incredibly lucky to have a husband like him.

Later, my rock of a friend Maryellen called me, and we talked for an hour.  She listened to my teary account of the visit to Janey.  That is so important---to have someone I can pour my heart out to, someone outside the family but still very connected.  I am so lucky in the support I have, from friends like Maryellen, from my family and from my extended blog family.  I truly want you all to know that---how much you all have helped.

Today I feel stronger.  I am sad we will probably not visit Janey today.  The Patriots play in between where we are and where she is, and traffic back and forth becomes a nightmare.  I would not let that keep me away, but I think also Janey might need a day without the confusion our visits seem to bring.  I hope I am right there.  I know she is in the place she needs to be, but I miss her so intensely.  It is not the normal course of things to have your little girl so far away, literally locked away.  My life has taken a turn which is often feeling surreal.  I need to get through this.  I think today, I will retreat to gather strength for the next round, to go on and keep on fighting.

The Mother's Day Card They Don't Make

If you stroll the aisles of your local card shop in search of a Mother's Day card, you will find almost anything you need.  My husband actually gave me a card this year from our cats.  Like that card, many of the cards are made to speak for kids that don't talk, or who aren't likely to pick out a card---which, truth be told, are most kids under the age of 20 or so.  Kids aren't extra known for planning ahead to make Mother's Day special.  That's more the work of husbands or teachers, and I appreciate all the work both those categories do to make sure I get some Mother's Day wishes.  However, the card that I've never found is one to give to the mother in your life that has a child with autism---a very specific card from our specifically special kids.  Here's some of what it would say, if it existed....

"Thank you for all the nights you stayed awake when everything in you wanted to sleep.  I don't know why I sometimes wake in the night, but you are there for me when I do."

"Thank you for changing diapers and pull-ups, and occasionally cleaning up from what happens when they aren't changed quickly enough.  Thank you for understanding that I'll be trained when I'm developmentally ready, not when my age says I should be"

"Thank you for finding your inner tiger to speak up for me when I can't.  Thank you for overcoming your fears and being an advocate for me"

"Thank you for focusing in on me when I am melting down in public, and ignoring the stares around me.  Thank you for finding the strength to keep taking me out"

"Thank you for having the courage to follow your instinct as to what will help me best, and thank you for having the flexibility to change course when what you thought would work isn't"

"Thank you for taking joy in my accomplishments.  Thank you for realizing that a triumph is a triumph, no matter what age it occurs at"

"Thank you for finding a way to communicate with me, however you can.  Thank you for knowing that talking in a conventional way isn't the only right kind of communication"

"Thank you for enduring my tantrums, my meltdowns, my crying, my manic laughter, my rituals.  Thank you for understanding I am doing the best I can"

"Thank you for seeing all the ways I am amazing.  Thank you for secretly thinking, as almost every mother thinks of almost every child, that I am one of of a kind, special in a way that no other child is"

"Thank you, most of all, for loving me---loving me with a love that is fierce and all-consuming and never-ending.  Thank you for being my mother"

And my own voice here---thank you to all the mothers of autistic children everywhere.  You are my sisters.  You are my heroes.  You are my strength.  You are amazing.  Thank you.

It's all about Daddy right now

Lately, Janey has been going through an "it's all about Daddy" stage.  It's a stage I think a lot of girls go through at about age 4, and as Janey is delayed with most things, it's about the time for it, I guess.  Tony is a wonderful father, and he and Janey have always had a special bond.  We say a lot that she's the most like him, in her basic personality, the part that is unaffected by autism.  She likes to be on the move at all times, she loves cooking and food, she is more athletic than the boys, she just clicks with him very well.  But she's taking it to a new level the last few weeks.  The few days that for some reason Daddy wasn't there when she got home from after-school, which he usually is, she fell apart.  It's hard with her, as she doesn't come out and say "I'm sad because Daddy isn't here", but she asks to do the things they do together, and when I can't do them, or can't do them the way Daddy does, she is heartbroken.  This morning, I felt like for one of the first times, she was understanding he was about to go to work, and she was not happy at all.  A hour or so after he left, she looked at me in tears and said "Daddy!  Have a great day!  Daddy!" which is what he said to her before he left.  I called him at work so he could say it to her again and remind her he'll be home tonight, which seemed to work.

The picture is from a few years ago, but shows well the happiness Janey gets from the games that Daddy thinks up---this time, drumming with cans.

The hard part is when Tony has to be away.  It's hard for all of us, but it's especially hard for Janey.  His current job requires a week or so here and there of training around the country---last year it added up to 5 weeks, which was unusually much, but most years will require some time.  And generalizing more, it's hard for Janey when anyone isn't around that she expects to be around.  The other day, she rode along when we took her cousin Zeben back to the airport.  That was hard, but what was harder is that William got out with him to say goodbye and took the T home, so he wasn't in the car going home.  About half way home, Janey suddenly said "William back!" and started to cry.  I know she thought William had left, like Zeben leaves, and wouldn't be back for a while.  We try to explain, but that is a concept that's a big beyond her.  It must be a scary world to live in, without a mental clock or calendar in her head, or one that seems to work well.  People can just disappear, and although she sometimes knows when they will be back, if that schedule is even a little off, I think she feels very unsure if she'll ever see them again.

I'm very, lucky to have a husband like Tony, and the kids are lucky to have him as a father.  He loves Janey (and the boys) exactly as they are.  Her autism is something that he can, better than I can, look around and past, to just see the little girl he wanted so much, the girl that adores him and is his joy.  Here they are, running together, two of the loves of my life.

Twenty Years

Baring any last minute divorce action, Tony and I will have been married 20 years on Thursday. Those have been good years----years with ups and down, with some serious health crises, with some losses of family and friends, but with more happiness and laughter and good times than bad.

The picture shows us just before we got married. I'd include an "after" picture, but I don't want to scare any people thinking of marriage off with how it aged me! Tony, however, looks oddly the same!

Autism certainly impacts our marriage. It can't help but do so. When you are under constant stress, when you never have a minute free of worry or supervision, when your time together is limited in the extreme---it affects you. At times, it's caused us to bicker over things so little that it would seem crazy looking back. It's caused us to feel like strangers living in the same house when we have done nothing but care for Janey for days. It's caused us to be exhausted, and not give each other our best. But overall, I would say it has made our marriage stronger. Part of that is just that both of us know it would be impossible without the other. Taking care of all our children has been a partnership, I think more so than with many husbands and wives. We need each other badly. Also, the few moments we get alone, we treasure. We don't take our time together for granted!

As with most people that get married, we took a leap of faith. I often think how lucky I got with Tony. Without us ever sitting down and figuring it all out, we have nearly identical philosophies on so many issues. Although most marriage advice writing would tell you otherwise, our children come before our marriage, and I think that has saved our marriage. We have a common goal---raising our kids as best we can. I think we both also are people that didn't go into marriage with a lot of expectations and visions. We didn't even picture the picket house in the suburbs, a perfect little boy and girl, youth sports and Disney trips and the best schools and all that. We didn't look a lot past just wanting to be together and have children. So when things got crazy, as they often seemed to, we didn't feel betrayed. We also share a strange ability to put aside the crazy times when we can. I can't think of how many days have been pure awful which we have ended with take-out Chinese, a funny TV show and a few enjoyable shared moments, and managed to end the day with a smile.

This all sounds pretty sappy and self-satisfied, reading it back, and I don't mean it to sound that way. It's been hard. But it's been a shared hard. I look forward (mostly) to the next 20 years!