Ideas for the toughest times

Now is not one of the toughest times with Janey.  It's been an overall good couple of years, which is an amazing statement to make, in that it has "years" in it. But this weekend Janey was a bit unhappy, with more crying and screaming than we've seen lately, and of course, it flashed us back to the toughest times. And it made me think---there's a lot of advice and ideas out there for those with newly diagnosed kids, and for daily life, and for tantrums and so on---but what about advice for the times that quite frankly are hellish?  If you haven't had times like that (yet), I hope most sincerely and strongly you never, ever do.  But most of us parenting a child with autism have, or will, and I have a few thoughts about getting through those times.  

Toss out the regular rules

When times were toughest with Janey, during days when she literally screamed all day, or cried all day, it sometimes took me longer than it should have to realize that it wasn't the time for consistency.  I at first would cling to the notion that if I gave in and did unusual things, like let her watch TV all night, eat chips all day, go for car rides day and night, take showers all day long, that it was going to somehow set a bad precedent.  I now realize---who cares?  When times are as tough as they can be, you are focused on survival.  If something gives you five or ten minutes of a happy or at least not as sad a child, and it's something that won't hurt them or you, do it.  You aren't in regular times.

Trade off

This is the time to beg your spouse to call in sick or take some vacation time.  If you are a single parent, hopefully you have someone that can help in times of emergency.  Either way, you MUST get a break now and then.  It can seem impossible, and you can feel as I have at times that you have to be there.  But even if it's only for 5 minutes, you need to have time to recover.  You need to be able to breath.  I remember the times Janey was in the hospital, when I'd get a chance to go eat in the cafeteria.  Those 15 minutes or so would feel like a miracle, and I'd come back able to go on.  And I remember times for whatever reason I couldn't take a break, and feeling quite literally like I could not go on.  You NEED to grab moments for yourself.

Get some mental support from those who get it

I am very, very lucky to have made some friends through this blog who are fellow autism parents.  I hope the rest of you are as lucky.  When you are in the midst of a crisis time, you need to be able to talk to someone who gets it, without "it" having to be explained. You need to be able to speak freely, to rant and rave and cry, to have someone who won't say "now, it's not that bad", to have someone who doesn't necessarily offer advice but just listens, to have someone who doesn't say something like "You REALLY need to get respite care!" when there IS no respite care...that kind of person.  That is part of why I made the Facebook page.  If you ever need to, post there.  I can guarantee there are others there who get it, and will listen.

Put off going to the emergency room as long as you can

You might not have been thinking emergency room, but I think most of us have had that thought at times, when your child has been screaming or biting themselves or banging their heads or crying for days.  It IS an emergency, and it's reasonable to think ER in an emergency.  And I would never, ever discourage anyone from getting help, but I know, from personal experience, that the ER is not a good place to be in a crisis.  It might be necessary, in order to get the next level of help, but it's a nightmare while you are there.  All my life, until my dying day, I will remember the approximately 24 hours we spent in the ER at Children's Hospital, before getting a room, as the worst 24 hours of my life, and the worst 24 hours I hope beyond hope I will ever have.  The ER is not set up to deal well with children with autism, to say the very least.

Don't be shocked if your child winds up in a psychiatric hospital

I was shocked.  I never, ever saw it coming, even though Janey was certainly in crisis.  When her school called and said they were sending her to the hospital by ambulance, well---I can't really describe that moment well.  And then when she was seen there, and the psychiatrist said she needed to be in a psychiatric hospital---again, blindsided. Sure, things were pretty bad.  Horrible, even.  But for whatever reason, I just didn't realize what that probably meant.  I won't get into right now whether the psych hospital was the right place or not, but I can say it was a safe place for her, and if nothing else, it let us recover for a few days while she was being taken care of.

Take it from me---it WILL get better

If anyone had told me how relatively calm and happy the last few years have been with Janey when we were in the midst of the toughest times, I would have laughed at them.  It did not feel possible.  It truly didn't.  But it was.  And talking to quite a few other people who have lived through such times, I've found that it does get better for almost everyone.  I'm not making promises about WHEN it will get better, or how long it will STAY better, but the very worst times somehow seem to be self-limiting.  If you can make it through those weeks or months, and keep yours sane and alive, there will be a day when you can look back at them and, no, not laugh, but marvel.  Marvel at how you made it through.  

Unclouded day after

I was discouraged yesterday, as you might have read in the post I wrote.  Last weekend was long, with a lot of screaming and crying from Janey, more than any weekend this summer.  We had gotten used to the sunny Janey.  For so many years, a troubled day with Janey led to a troubled few weeks.  It's hard to believe, to accept, that Janey does recover much more quickly than she used to.  Even after school yesterday, she was happy.  And then there was a "toileting incident", the kind that takes a long time and many loads of laundry to take care of.   I wrote my discouraged post, and linked to it on my Facebook page.  And so many people responded.

I don't think I can ever really explain how much the support of others helps me---others living this life, or those who understand it.  I can't even imagine what it felt like to be a mother like me in the days before the internet.  I would feel, I am sure, like the only person on earth with a life like mine.  Instead, I know there are so many others who get it, who pick me up, who have helped me through some very tough times, who have rejoiced along with me at the good times.  When I woke up this morning, not sure what the day would be like, and read all your comments, read the kind words from Mary and Maura and Catherine and Fab and Kathleen and Maryann and Cynthia and Aileen and John and Rachel and Michelle and Nancy and Shanti and Antti and Grace and Julie and Sophie and Beth---wow.  For some reason I went back and read again about times during Janey's two long hospitalizations, and the overwhelming kindness shown to me by so many then, and I thought about our recent visit to meet Michelle and her wonderful family in person, and I thought about my husband and sons and extended family, and high school friends I have reconnected with on Facebook,  and people like Maryellen, who sat with me during so many days in the hospital---and I was overwhelmed.  I hope you all know how much you mean to me.

 So---today is better.  I had a wonderful morning with Janey before she got on the bus.  She was happy, calm and engaged.  We did our favorite walk, to the "ice cream store", and she picked out not chips or ice cream but a jar of salsa, and we waited for the bus listening to "I'm Gonna Wash That Man Right Out of My Hair" and we smiled and hugged each other and enjoyed the summer weather as we waited.  It felt like the unclouded day in the song Janey loves so much.

A Year Later

I didn't sleep well last night.  I kept waking up and having flashback type memories.  I've always heard the anniversaries of events can bring them back vividly, and I guess it's true.  It was a year ago tomorrow that Janey was taken to the emergency room from her school by ambulance, the Friday of Veteran's Day week---like today.  She was in a state of agitation such that she was biting, lashing out, screaming non-stop, taking off her clothes, flinging things around---it was a nightmare.  She stayed 6 days at Children's Hospital as a boarder, waiting for a place at a psychiatric hospital, and then 19 days at Bradley Hospital in Rhode Island (as most of you already know).

Of all the memories of that horrible time, the most vivid one, the one that kept coming back last night, took place the morning after the first night in the ER.  Janey had slept very little.  She had no clean clothes---Tony had gone home to get some and hopefully get a little bit of sleep.  I asked if there were any scrubs or anything she could wear---thinking a children's ER sure might have something.  They gave me, to go with the hospital top, a pair of pants that were about a child's size 2 and a Depends style pullup that would have fit a men's XXL.  Janey wouldn't keep them on.  We were in a tiny room, split in half by a pull-down metal wall that covered all the "medical" parts of the room, so we had only a cot on a bare, dirty floor---absolutely no room to move.  We were required to leave the door open, so an eye could be kept on Janey.  We were right by a busy desk.  Janey wanted out.  She kept taking off the ill-fitting clothes and trying to run down the hall.  As I tried to stop her, she bit me on the hand, very hard.  Then she grabbed some chocolate milk and flung it around the room, and tried to break the tray it was on.

The room was suddenly filled with people---probably 10 people, including two cops.  A nurse pulled me into the hall and told me I had to go elsewhere, that I was the focus of Janey's anger and I needed to not get hurt more.  I was taken to a small meeting-type room.  Another nurse brought me some ice for my hand, and some tea and toast.  I sat there, stunned.  It felt impossible that this all was actually happening.  A few minutes later, a third nurse came in and asked me "How does Jane usually react to Haldol?"  Haldol?  Wasn't that what they give violent criminals on TV shows to sedate them?  Why would Janey have ever had Haldol?  I said blankly she had never had Haldol.  The nurse looked skeptical and left.  And I sat there, feeling that my life had changed into something I didn't recognize.

That sequence, that scene, is what kept me awake.  It still seems unbelievable, like something that could not possibly have happened.  But it did.

I could write for hours about the past year, a year in which we spent far too much time in hospitals.  I have a lot brewing in my head about the difference between treatment in different hospitals, and treatment when you are there for a psychiatric reason and for a medical reason.  But I will save that, and say only two more things.

One is that a year later, Janey is doing well.  We are in probably the longest stretch even without any tough times that have lasted more than a day.  I think the changes are due to both a change in medications and a change in our parenting.  Whatever it is, it's good.  However, we know all too well now that things can change suddenly, and we don't take the good for granted, not for a second.

The other is that while I had my dark night last night, what kept the memories from overwhelming me was remembering the support I got from friends at that horrible time---friends in person and friends from around the world I know from this blog.  You all were incredible.  Your love and support and generosity---I cannot possibly say how much they meant to me.

Here's a picture of my big girl, wearing a jacket I bought for her brother that he didn't like but she loves for some reason.  My love for this amazing girl keeps me going---with a little help from my friends.

No Christmas Miracles

I am not sure why I always hope Christmas will be a better day for Janey than it is.  I guess I have a deep seeded, secret, well-hidden belief in Christmas miracles.  I think if I do things right, and believe really, really sincerely, something will work and Janey will have a wonderful Christmas.

Needless to say, the miracle didn't happen again this year.  I won't say it was a bad Christmas, because it was a very good one, in ways that were apart from Janey.  My parents were very generous and therefore the boys each got a present they very much were surprised by and loved.  The kindness of so many people allowed me to not have to worry about medical bills much, so I was able to get the kids some presents they very much liked from us,  too.  And we even had a bag of presents from an organization that provides help to families with disabled children, including hats and gloves for the boys and several presents for Janey, one of which she hasn't even opened yet.  The boys got into the spirit and gave us presents, we did our traditional cheese and cracker tasting, we had a great night at my friend Maryellen's house on Christmas eve, we had a beautiful tree and so much was terrific.  But Janey....

If the mood stablizers are working at all for Janey, they are working to stablizer her mood as bad.  She was cranky, screaming, hitting almost all day yesterday.  There were a few very brief happy moments, mostly while eating, but most of the day, it wasn't good.  She opened a few presents with extreme half-heartedness, mostly giving up halfway through unwrapping.  She did like a giant SpongeBob I gave her, and a fuzzy Care Bear that was in the present bag, but mostly she ignored all presents as usual.  Her screaming was the backdrop for most everything we did.  It was very wearing.

It's on days like Christmas I most feel for Janey's brothers.  They didn't sign up for this.  They deserve a great Christmas.  We are Janey's parents.  We DID sign up for this.  We are responsible for her.  But they aren't, and so often, their lives are so affected by her.  They don't say that.  They both thanked us for a great day.  They are wonderful boys.  But sometimes I feel awful for them having to always come second.

I think we are weary.  It's been a very long few months.  So many things have been tough, and then there has been hope followed by disappointment.  The Bradley Hospital stay turned out to be just respite---nothing long term was gained.  The new medication seems like a flop so far.  The state insurance help is now just another piece of annoying bureaucracy I soon need to figure out.  And there is always the screaming, the crying, the hitting.

I don't want to write such a negative post today.  If it were not for the amazing support and kindness of so many people, I think this post would not just be negative, it would be despairing.  And we are not despairing.  We are tired, we are discouraged, but we are hanging in there.  I guess that's good, for now.

So--a few pictures of our Christmas, and my hope that all of you had a wonderful Christmas, if you celebrate it.  Let's all look to the future and keep hope alive for 2015.

Joy and Lessons

Janey is home, and the overwhelming feeling we have, so far, is joy.  It is wonderful to have her home.  We realized, this past month, what a crucial part of our family she is.  She is our focus, our center, our mission.  Without her, I think all of us felt a little lost.  She is a huge challenge, a huge job, but most of all, a huge joy.

We have, however, learned a few lessons which are tougher to take than the lesson of how we need her.

Janey's release from Bradley was sudden.  Late last week, when both the school and I talked to the hospital, it seemed that her release was not going to be soon.  Then, on Monday, I got a call from the social worker at first asking how our visits were going and then telling me they were planning on releasing her the next day, Tuesday.  I had a huge mix of emotions.  First, happiness, but then, a little confusion and a lot of "what next?"  Yes, she had calmed down.  Yes, her medication had been adjusted.  Yes, the immediate crisis was over.  But most things had not changed.  Janey was still screaming often, biting her arm quite a bit, often upset.  We still had no respite.  We had no new ideas for dealing with Janey, no new plan.  There was not going to be any release meeting.  We didn't speak to the psychiatrist in charge---we had met him only once, at the intake meeting.  Basically, Janey was coming home because her mood had changed.  That is something that has happened at home, without a hospital, many, many times.  We could have done that here.

To play the devil's advocate with myself---we did get some respite.  We had the 18 days with Janey at Bradley, where we were able to sleep all night.  We were able to spend 18 days, when we weren't driving to Providence, doing the kind of things we haven't done for a while---mindless games, mostly.  We probably didn't relax as much as we should have during that time.  We were still in a bit of shock, and we still were thinking about her constantly, and driving to see her often.  But we did have that time.

However, I would have to say overall, I am still quite troubled by the state of our country's mental health treatment for children.  The Children's Hospital time, when Janey was a "boarder", was hell.  I don't have another term for it.  It was hell, hellish.  The Bradley hospital is a lovely place, full of kind people.  I know Janey was treated well there.  But it is an extremely short term solution, and in the end, it changed almost nothing.

There was a moment as Janey was being released when I was signing forms at the nurse's station.  The nurse and the social worker asked me if I had any questions.  I think they could see the look on my face, a look that was that was a mix of concern and something like internal laughter.  Yes, I had questions.  Just where do we go from here?  What I said was "We just wonder if you have some suggestions on dealing with Janey's difficult behaviors at home?" or something along those lines.  The answer was that they had sent a list of their strategies to Janey's school.  The social worker said "You know, we could send a copy to your house if you want!"  Um, yeah.  That might be good.  Although excuse me for saying I don't hold out huge hopes that the list will solve everything.

But I'll end here on a more cheerful note, one more appropriate for this Christmas season.  We HAVE learned something.  We have learned that we are the ones who are the experts on Janey.  It isn't like there are people out there who can tell us how best to help her.  We are the people who know that.  There are places she can go in times of extreme crisis, if we are able to first endure the horrors of boarding.  We have learned that besides that, one of our best allies is the Boston school system---who stood by us during all this, stayed in close touch and showed a huge level of caring for Janey.

And we learned how many wonderful people out there care for Janey---the readers of this blog and the friends we have made through the blog and throughout our lives.  We were blown away, stunned, overwhelmed, by all the thoughts, prayers, support through monetary help and kindness and love and offers to help and notes and emails and just plain love from all of you.  We might feel alone sometimes in dealing with Janey, but we are not alone.  Far from it.  Thank you, from the deepest parts of our hearts.

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 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.

Should I even be writing about Janey?

Lately, I've read a few blog posts and articles that question the whole idea of sharing thoughts and stories about parenting an autistic child.  The gist of them is that it's not our story to tell as a parent---that someday, Janey may want to tell her own story and that she might not appreciate what I've written about her childhood being out there in internet-land.  It's a very valid thought to consider, and I have been thinking about it for a few weeks.  I've concluded that I think it IS valid for me to write about her, and I'll give my thoughts and reasons.

The first thought I had, to be honest, was that Janey will never be able to tell her own story.  I hope I am wrong there.  I hope that Janey does learn to read, to write, to be able to tell me her take on her life.  I hope that extremely much.  But I don't think she will.  I know there are non-verbal people with autism who do communicate very well, through writing.  But I don't think Janey will be one of them.  It's not that I don't think she would ever be capable of that, although I do have my doubts about that.  It's more that she is not very focused on written or visual communication.  She's an auditory person.  She talks probably more than would be expected for someone at her level of functioning in other areas.  She listens pretty well.  She seems to have vast, vast stores of auditory memory---songs, lines of conversation, full movies.  But she has resisted most any attempts to convert this knowledge into written form, or to use a visual communication method.  So maybe she'll dictate her story?  I don't think so.  I haven't ever really heard of an autistic person who was minimally verbal in a truly communicative way at Janey's age who then became verbal in a way that could tell stories of the past, or give perspective into what is inside her head.  I hope I am wrong there, but I honestly don't see Janey being able to tell the world her own story.

Next, I had to consider WHY I write about Janey.  There are two major reasons.  One is to keep myself sane.  Writing is my release, my way to getting through the days, of working through my own thoughts, of being able to face the future.  Quite selfishly, I need to write.  Less selfishly, I need to write to be able to be strong for Janey, and for the rest of my family.  I need to know I can sit down here at the computer and write about my life and Janey's life.  Without that, I think I might give up.  That's the ugly truth.  The other reason I write is to provide support to others with children like Janey.  I think over the years, I've done that some.  I've had people tell me they feel far less alone after reading my blog.  I've had a few people tell me that I helped them go on after tough times.  That means the world to me.  I don't advertise my blog much, and I'm not part of the larger blogging world.  I am not good at that kind of networking.  But somehow, over the years, people have found this blog and have told me it's been helpful to them, and that is absolutely one of the things I'm proudest of in my life.

And so here we get a bit of a vicious circle.  I write about Janey so I can continue to parent her---so I can have the strength I need to be the best parent I have to her.  I write also to hopefully, in some small way, give strength to other parents.  Raising a child with autism is not easy.  I don't think even the most positive parents would say it is.  And raising a child to reach their maximum potential, to maybe someday be ABLE to tell their own stories, is even harder.  We need all the help we can get.  We need support from others that truly understand.  We need to know there's an outlet for all the feelings that this tough parenting gig brings up---sadness, frustration, sometimes anger, sometimes despair and sometimes, yes, extreme pride and happiness.  We need that connection.  Without, I know I couldn't go on.  So in order to give Janey the best chance at a full life, and the little bit of a chance she might someday be able to tell her side of the story, I NEED to tell mine.

We all make mistakes as parents.  If anyone thinks they don't, they are probably making more mistakes than most.  So, if writing this blog is a mistake I'm making, I'll take that chance.  I'll take the chance that Janey will come back some day and hate me for writing it.  If that happens, I will accept that, because writing it would have helped me help her get to the point where she could express that.  I'll keep writing in the hopes one day Janey can tell me if I did the right thing or not.

Why I blog

If you search for blogs about autism, you find a very lot of them.  However, what you don't seem to find is too many about truly low-functioning autism.  There are some, and of course kids with all kinds of autism do have traits in common, and there is no real set in stone dividing line between high, medium and low functioning autism.  But the fact is I haven't found a lot of blogs about kids that function at Janey's level.  And I think I know why, at least partly.  With LFA, the narrative can get stalled.  What Janey is doing now is very similar in a lot of ways to what Janey was doing a year ago, or two years ago.  She doesn't make huge breakthroughs.  And because of her LFA, we don't do a lot of other exciting things that would spice up a blog, like taking big trips or outings.  We aren't following a radical new treatment regiment.  Janey is not suddenly picking up her iPad and writing books, and I doubt she ever will, although of course it would be wonderful.  Janey is Janey, and that's what I write about.  So why?

Well, for three reasons. 

The first is that writing is my therapy.  I'd write about Janey even if no-one was ever going to read it.  That is evidenced in  the 20 or so diaries I have around the house, which I mostly wrote in high school and college, but some as adults.  I wrote for myself, because writing is how I process things.  The day Janey was diagnosed, I started this blog, and I think I did it in blog online form mostly because I can't even read my own handwriting any more, and I wanted to type a diary.  I'd heard about blogging, and I figured I'd try it.  I didn't tell much of anyone about the blog, and I didn't promote it except in very small ways.  Gradually, it started to get read, and now, it gets read a good deal, which is amazing and wonderful to me.  But I still write in it much for myself.  When I have a tough day with Janey, or a wonderful day, my first impulse is to write about it.  

The second reason---to give Janey a voice.  I hope someday Janey will have her own voice.  I certainly follow with interest news about other people with LFA finding a way to communicate.  But in all honestly, I don't think there is a huge hidden store of deep insights that will someday make up a beautifully written book inside Janey's head.  And my point here is that that doesn't make her life, her ideas, her communication, her voice ANY less valuable.  I don't want to give her a voice to prove that she somehow has hidden stores of miraculous insights.  I want to give her a voice in a way because she doesn't---because there are lots of kids and adults like Janey out there, and their lives are valid.  They have lives that people should be able to hear about.  People can learn from Janey.  They can get insights from stories about her life into what it's like to live with a disability that affects the mind, the emotions, the ability to learn.  They can see that she can be a delight, can be amazing, just by being her.  Hopefully, people will realize that a person's worth is not measured by IQ or future earning potential, but that we all have a value.

The third reason, and probably the most important---to support other parents, and to get support from them.  I don't know how I would have lived through the last 5 years had I not met other parents with girls like Janey, had I not realized that I wasn't the only one with a child like her, had I not gotten the hope that comes from hearing there is indeed a bit of light at the end of the tunnel.  I know there are girls (and boys, but there is less out there as a support for girl) being diagnosed with autism every day, and not all of them are like one misguided book about girls on the spectrum made them seem, very verbal with unlimited futures.  The media tends to focus on girls with autism that are misdiagnosed because they seem so "normal".  But I know there are a lot of girls like Janey, that will probably never pass for what society calls normal.  And there are a lot of parents that love those girls, but are starting out on a tough journey, one filled with crying and screaming and sleepless nights and frustration.  I want to tell them I know how it feels, and I also want to give them hope---not false hope that says "one day your child will be cured, if you do everything right!" but hope that you will still have wonderful moments with your girl, that she will bring you happiness, that one day you will have a time when you think "I wouldn't want her to be anyone else"  And then she will scream all night and you will lose \that feeling for a bit, but it will come back, here and there, and that's enough.  If I can give one parent that message when they need to hear it, that's enough too.

Happy Thanksgiving

I want to say Happy Thanksgiving to anyone reading this, and an extra-extreme Happy Thanksgiving to the other autism/special needs parents out there. My brothers and sisters in lifestyle---you probably understand how bittersweet holidays can be, even one like Thanksgiving, where it is not all about kids being expected to act in certain ways. I am so thankful for Janey, for having her, for her beauty and grace and how unique she is. I am not thankful for how hard her life is now, and how hard it will be in the future. I am not thankful she is going to have to struggle her whole life to be understood, to do things that the rest of us take for granted. I am VERY thankful for the people out there who love her---the family and friends and teachers and staff who care for her. And the students---the amazing students in her room at school who accept her. I am not thankful for how hard life with Janey can be sometimes. It doesn't take a holiday---we had many meltdowns today, diaper incidents, just as many tough times as any day. I am not thankful for the ways autism (not Janey, but Janey's autism) makes life so difficult so much of the time. So bittersweet. I should be more just plain sweet today, but more and more, I am striving to be just plain honest, not just plain sweet. I can say, though, I am thankful for Janey. Not for all her diagnoses, not for all her behaviors, not for the diaper incidents or the crying, but for Janey herself. For the wonderful little girl she is, despite all she has to deal with internally and externally. And I am thankful for you all, my fellow travelers on the slow boat to Holland, to quote another parent. Despite the differences we might have in views and opinions and approaches, we are all in this together. Thank you.

Making tough decisions

Lately I've been realizing there is just so much I can do in life, and sometimes I have to just preserve my sanity by not doing things I just feel like I can't do. I won't get into all the details, but I had made plans to do something for a friend, and just felt like I'd hit a wall and couldn't take doing it---it would have involved a long car trip and a weekend away and I knew it would be hell on wheels with Janey upset the whole weekend and me exhausted (I was sick on and off for a month) and I just drew the line. I am not sure if it was the right thing to do, as I know I hurt the friend very much, but I am not going to be a good mother to Janey if I am not able to function. It is hard as I know that no-one without a child like Janey really, REALLY gets it! (Thanks for being out there, Michelle!) Even days she seems happy and cheery and sweet, it can all turn in a second. The picture here is from today---we went into the city to a free concert by There Might Be Giants. Janey enjoyed the concert overall---she jumped up and down non-stop and didn't cry, but I had to hold her hand EVERY second as if we let go even for a second, she bolted into the huge crowd and someone had to run as fast as possible to grab her. She's a fast runner. And I was on edge every second, hoping she would stay in a good mood, not freak out, not get lost, not ruin everyone's day. I can't say it was enjoyable for me. But probably no-one there would have guessed that---I am not going to be grouchy at all times and not smile and remind everyone how hard my life is, and they can't read my mind, so I think sometimes since I am the one responsible for her and no-one else ultimately (when Tony isn't there), it is just impossible for them to really, really understand. Actually, Janey has been great lately a lot of the time. She actually sat through TWO meals out and allowed us to enjoy our meals. But when I say she's been great lately, I edit out the at least hour or two each day probably she spends crying, either off and on or non-stop. And I edit out all the things we don't do or have to do to keep her happy---all the times the boys don't get attention, or we don't go someplace we'd like to, or I am just vigilent making sure she isn't running away or eating things that aren't food or exploring the contents of her diaper or taking off her shoes and socks outside or taking toys from other kids or so on and so on and so on. I sound like one big run-on complaint here, but I decided when I started this blog that here was my place to vent, because so much of the time I am concealing how I'm really feeling.

Anyway, after all that rambling, I worry I've really lost a close friend by drawing the line about what I felt I could do. I don't want to lose friends, but I guess my family has to come first, and because Janey is the one in the family that has the most needs and needs me most, I can say Janey has to come first. And to be able to be there for Janey, sometimes I have to put my own needs first. And that's the hardest part.

Autism Awareness Day

It's Autism Awareness Day, and I am thinking about how little awareness really does for anyone. It's great to be aware autism exists, but hey, I'm aware lots of things exist, and that doesn't do a bit of good to people dealing with them. Fire exists, cancer exists, poisonous snakes exist, floods exist....and so on. What I wish---there was a Help People Dealing with Autism Day. Here's some ideas....

1. Offer to watch a child with autism. It's not as hard as you think. Their parents do it almost every hour of the day. Yes, they might cry. Yes, they might show strange behaviors. Yes, it might not be all fun and games. But it might be---our kids can be a lot of fun sometimes. And even if it isn't, think about how much just a few hours of freedom means to the parents. It might save a marriage or save someone's sanity.

2. Really get to know a child with autism. If you are around them, and I'm talking here not babysitting, but with the parents around, sit down with them. Play with them. Don't do this trying to teach them things, or quizzing them to see if they know things. Follow THEIR lead. If they want to hear the same book 50 times, read it to them 50 times. You aren't their therapist or teacher---you can just be their friend.

3. Do something for the sibling of a child with autism. They, like the parents, live with autism all the time, but unlike the parents, they didn't choose to have the child. They love their siblings with all their might, but it's not an easy life for them either.

4. Ask a parents of an autistic child what supplies/books/materials/treats their child might really like. Little things can be so helpful---you don't have to spend much to get something that might be a huge treat for the child, if it's something they are really into.

5. Support public funds being spent on SUPPORT for autistic people---after school funds, recreational programs, housing for adults, respite care and much more.

6. Say something nice about the autistic child. Don't act like they are a tragedy. They aren't. Every parent likes to hear nice things about their kids.

7. Don't,don't, don't,don't, don't offer us information about a "cure". You are not telling us anything we haven't already thought about, and it's hurtful to many of us.

8. Be a friend to the parent---just a regular old friend. Nothing refreshes a parent like doing something fun with a friend.

9. Include the child in events like birthdays or other parties, but understand if the parent decides it won't work out. Most of us parents are very sensitive to how a child will really do at various events, and we will always appreciate the invitation, but we might not accept.

10. Don't assume our child will have special abilities, or that our child is a genius inside, or the child is slow, or anything about the child's abilities. Ask the parents if you are close with them. All kids have special abilities in their own way, but most children with autism are developmentally delayed. We parents know that. We can offer the best assessment of what our child is capable of.

11. If you see a child in public that you think is autistic, and they are having a meltdown, don't stare, or comment, or look disapproving. If there is a simple way you can help, you can try to, or you can just ignore the whole scene, or you can give the parent a sympathetic smile. We've all been there, even with our "normal" kids.

12. Know how any help at all is EXTREMELY appreciated by the parents. You can make a huge difference in their life by helping.

And if you got this far, thanks for caring enough to read this!

Sign Language and some complaining

We've been trying a little to teach Janey some signs. I resisted it for years, because I think I felt since she COULD talk verbally, that is all we should encourage. But the verbal talking is not making a huge amount of progress, and she was signing "more" all the time after learning it at school. I found a good web site that shows little videos of each sign. I think it's something a lot of people know, so it should be easier to co-ordinate with school than some things. We'll see how it goes.

I'm very happy to have met another woman with an autistic daughter through this blog---thanks, Michelle! It's so wonderful to talk to someone else that has been through a lot of this!

I'm also happy that Janey is starting music therapy at school. It took a long time to get it started, but I really like the therapist and I think it will be helpful.

To be less positive for a minute, I've been thinking about how much more parents with tough kids like Janey need support and breaks and time off, and how much harder it is to get that than it would be for parents of "normal" kids. It's an example of something that should be MORE available being actually LESS available. If Janey were mainstream, I could easily find a day camp, swimming lessons, dance lessons, music lessons, day care, etc. Paying for them might be an issue, but FINDING them wouldn't be. But as things are, it's so very hard to find such classes or care, and if I do find them, they cost much more than they otherwise would. I don't think people sometimes realize how hard just a regular day is with Janey. Imagine taking care of a child that does the kind of things an 18 month old would do, so you have to constantly watch them, but they have the physical abilities of a 5 year old, so it's even more dangerous. Then imagine you have no reliable way to talk to them, and that they are prone to suddenly have a tantrum or start crying at any moment, and you have no idea why most of the time. Then imagine that that is your life, all the time, and there is almost never a minute off. And imagine you love that child more than anything on earth, and want the best for them, but half the time you are too darn worn out to do all you think you should for them. And imagine you have 2 other children, and a house to take care of, and bills to pay. That's my life. And I like my life, most of the time, but I just wish I could get a break once in a while. And I am luckier than most, with a very supportive husband and good friends. Okay, enough complaining.