The Quest for Help

The big 11th birthday is over.  It was a good one, truly.  Janey was happy most of the day.  Our dear friends invited us to a BBQ/Birthday/Going off to college party, and we all had a wonderful time.  Janey lasted there longer than I think she has at anyone's house for years, with just a little break for a car ride in the middle.  She adores my friend Maryellen and her daughter Julia, and we are so thankful as always for friends that value and love Janey.  Freddy had a very good birthday too, and we felt quite happy about how the day went.

The night was another story.  We realized, way too late, that Janey had had far too much chocolate during the day.  She didn't sleep, not a wink, until about 4 am.  She wasn't tired at all.  She didn't scream, much, but she didn't sleep.  It was like it was daytime for her.  Tony and I traded off shifts and both wound up exhausted.

We couldn't sleep in this morning, as we had a 8 am appointment at the Lurie Center, the autism clinic.  We'd put off the appointment several times due to Janey's illness, so we needed to go.  We dragged ourselves out of bed and made it on time.

The doctor I saw (mostly just me, as Janey wasn't having any of it and only lasted about 3 minutes before Tony had to take her out of the room) was the same one we saw before, a very thoughtful and knowledgable woman.  We talked mostly about medication, and ideas she had for ones that might work better for Janey.  The problem is that very rightfully, a child should have only one psychiatrist prescribing medication, and Janey has the psychiatrist she'd had since she was 5.  We need to make a switch to use the Lurie Center for medication, and we aren't sure what to do.  I think the Lurie Center knows more about autism---I know that, really, but we like Janey's current psychiatrist and he's always been available when we needed him.  And we are never sure about medication, and tend to be very conservative about it, so we need to make some decisions.

The other talk, just briefly, was about help and respite.  Basically, we went over the fact there is none.  Starting this fall, Mass Health will cover ABA.  The problem is, ABA isn't respite.  It's a very specific kind of teaching that more and more, I don't think helps Janey at all, and might actually hurt her.  It's well meaning, it's often extremely skillfully done, but reading school reports and looking at what 7 years of ABA have actually done for Janey---well, I don't think adding more of that to her life is going to help anything.  It's certainly not going to reduce her stress or our stress.  So---basically, more ABA isn't going to do a thing to help.

I jumped on a few opportunities our local autism agency posted, without thinking them through too well.  They were hosting an evening at the Children's Museum, just for autistic kids.  That might be okay.  It's certainly not respite, and getting there will not be easy, but it's something.  Then, there was actually a drop off, one to one program.  In my delight that something like that was offered, I RSVPed right away.  Finding out more about it, I realized it's in a place only accessible reasonably by public transit, and not directly by that without changing trains, and that it's to go to a plaster craft activity.  I can't take Janey alone on the train.  She will have no interest in plaster crafts.  I'm still going to try to go, because the lure of 2 hours of respite while she's at the program draws me in, but I will need to bring someone else with me, and I am very worried Janey will not make it through the time, based on the last time I attended an activity, with both Tony and me THERE.  She was the only child I saw there who needed to leave, basically because she was kicking me in the head.  The third activity is a field day, not drop off.  I will try it.  I am glad there are activities, and I hope they work, But 11 years of Janey have led me to a deep form of realism about such things.

Today, we got the back to school information.  I had planned to sign Janey up for after school this year.  We didn't last year, because it was only going to last until 4:15, and Tony wouldn't be able to drive there to get her.  The drive is at a very busy part of the day, across town, and increasingly, I can't drive if it's dark at all.  But this year, it was going to run later, until 5:15, so we planned to try it.  The flyer in the material today said the program will have a 17 to 1 ratio.  I called the school and talked a minute ago to the very nice director of the program, who informed me that due to a lot of budget cuts, they are unable to serve kids that can't work under a 17 to 1 ratio.  She did understand that means basically NONE of the kids with autism at Janey's school can attend the program, not just Janey.  Some kids in her program could handle maybe a 5 to 1 ratio---not every kid needs one on one like Janey---but I don't think there's many autistic kids at all that can be in a program with a 17 to 1 ratio!  I asked her if she knew of any people I could call to try to get them more funding, and she said she appreciated that and would look into it for me.  About half of Janey's school, 19 classrooms, I believe, are for kids with autism.  It's kind of sad that the city won't fund afterschool for them.  And kind of a blow to our plans for using afterschool for respite help.

Reading all this back, I worry I sound like I'm being a no-win kind of person.  Instead of saying "Wow!  Now Janey can get ABA and go to a art activity and after-school!  They are all open to kids with autism!", I am saying none of them will likely work for Janey.  This brings us back to the doctor this morning, who completely understood what I was saying.  She said the big umbrella of what is currently diagnosed as autism very often doesn't cover the kids at the extremes.  There are many, many kids with autism that would be, and are, very well served by what is out there.  But for a child like Janey, with a severe intellectual disability, with self-injurious and aggressive behaviors, with tantrums and limited speech---well, anyone who has spent more than a few minutes with Janey gets it, right away.

This is a long entry.  If you got this far, thank you!  I am half working this all out in my head.  We'll keep on questing, and keep on writing about it.  Meanwhile, the birthday love so many of you sent our way keeps us going!

Ready for the help that doesn't exist

Today wasn't much of a good day.

Janey has been having a hard time lately.  The new medication, if it's doing anything, isn't doing much.  Janey seems very unhappy, and her aggression has increased.  She's hitting me a lot, and over the weekend, she tried very hard to bite me over and over.  Tonight, she bit Freddy out of the blue, quite hard.  School reports aren't good either.  Her teacher reported that she was screaming a lot, and biting randomly, and reacting very strongly when anyone tried to get her to sit down and work.  I've seen that at home---a quick and angry reaction to any redirection or being told "no".  We are feeling overwhelmed.

Over and over, we've been asked if we have had in home ABA services.  I always said no, and that it wasn't help we wanted at this point.  I am becoming less and less of a fan of ABA as the years go by.  Janey doesn't seem to respond to it well.  And the help we need is RESPITE, not someone coming into the house in a situation where we can be at furthest from Janey in the next room.  I can picture Janey screaming non-stop, trying to bite the therapist, them looking to me for help I don't have.  I can picture cancelled appointments, as we found to be the case with Early Intervention, leaving us sitting around the house without plans waiting for someone who never shows up.  I can picture spending the rare moments of peace I have cleaning up in anticipation of therapists arriving.  I can picture....well, you get the picture.

However, the doctor at the Lurie Center and several other people have implied that I need to get this service as sort of a starting point to get any other help.  And lately, I'm ready for any, any, any help I can get, including someone to come in and work with Janey.  I'm ready for any suggestions, for even a ten second moment of respite in the next room.  I felt ready, finally.

SO----here's the kicker.  I'm ready.  I called the family service person for the Lurie Center.  And what I half suspected to be true is indeed true.  We CAN'T GET in home services.  We have the wrong kind of insurance.  Tony has federal Blue Cross, which for some bizarre reason is exempted from the FEDERAL laws mandating coverage.  The Mass Health supplemental plan we recently got for Janey ALSO doesn't cover ABA in the home.

Which means, of course, the only help anyone ever said there was didn't actually exist.  Not for us.  Not now.  Supposedly, starting this coming winter, Mass Health will cover ABA, but there will be waiting lists and huge backups and priorities for younger kids.  In reality, even then it's not going to be easy to actually get.  And for the past few years, when I've been thinking I was someone holding out on help that I didn't think would be that helpful---well, surprise.  I couldn't have gotten that help anyway.

So where does that leave us?  THERE IS NO HELP.  That is something I am putting in caps, because despite it being the truth, I think many people still believe it isn't.  I asked the family service person today, in any way I could think of, if there were ANY respite available, ANY program Janey could attend on weekends, ANY way to get more help.  And the answer was...no.  There isn't.

I have a child who requires around the clock supervision, who is aggressive to the point of hurting us, who cries for hours on end, who is not toilet trained, who bites herself badly all the time---and there is no help.

I guess this the reality I need to accept.  The feeling I got, the implication I felt I was hearing, at the clinic is that the only real help is now and then kids going into hospitals like Bradley, where Janey went in November.  I'm not willing to accept that.  Although our insurance was very good at covering it (but not Children's Hospital---they are supposed to pay some of that bill, but have yet to pay a cent), it cost the insurance a huge amount.  It makes no sense---they will pay for a psychiatric hospital but not the much cheaper help that could keep her out of one?

I will stop now, for fear of rambling.  But I wanted to get this down before I calmed down, for a change.  I try to not get angry.  I try to not get upset.  But tonight, I am.  Janey is my daughter.  I love her.  I will care for her as best I can for the rest of my life.  But somewhere, somehow, something is drastically wrong when there is no help at all for those like her that need it most.

Hopeful visit to an autism clinic

Today we had our visit to the Lurie Center, an autism center connected to Massachusetts General Hospital.  We had been waiting a long time for this appointment.  A lot of people had recommended this center to us back when Janey had her crisis in November, and I contacted them then.  To get the appointment, I had to fill out a lot of form, wait for them to be processed, and then I got a call to set a time, which was far in the future---but the future finally arrived!

Cheery Janey before the appointment

I was trying not to get my hopes up much for this appointment.  We've had several other such clinic visits at different places, and they have been mostly letdowns.  I didn't want to pin a lot of hopes on this one, but I must say I'm feeling good about it, and quite hopeful in a lot of ways.

The appointment mostly consisted of me talking to a psychiatrist specialist in autism.  Tony came along, and Janey was in and out of the room, as her patience for sitting around during long talks is limited.  I knew as soon as I started talking to the psychiatrist that she seemed to truly understand and ask the right questions about Janey.  In analyzing what was different in my head, I realized that it seemed like she had a lot of experience dealing with children like Janey---children on the lower end of the autistic spectrum, the children that wind up in hospitals and in psychiatric wards.  That was strangely comforting.  Often, even in the world of autism, I feel like an outsider.  I don't need peppy "resources" about camps Janey never could attend or ideas for games or books she could never read or play.  I need practical advice and help, and I felt like I got it there.

First, we got a prescription for a new medication.  This one will eventually replace the Risperidone that Janey has been taking for a long time.  The psychiatrist was very, very familiar with the various medications for kids like Janey.  We were pleased to hear her say that the psychiatrist Janey has seen up to this point has done quite a decent job with her medication so far.  However, he is a more mainstream guy, who I believe sees mostly kids with things like school anxiety.  Today's psychiatrist knows more about kids with severe mood swing, aggressive behaviors and self-injury, and we are hopeful about the new medication.  We did have a scare when our pharmacy said our co-pay would be $150 a month (for 30 pills!)  But we reminded them she has the supplemental state insurance, and for the first time, that worked well for us, and we didn't have to pay at all.  Out of pocket, the cost would have been $1124!  We joked that we certainly hope they are miracle pills.

Next, we talked about how we can get more help for Janey, and what we will do if she has another crisis.  The psychiatrist finally convinced me to consider in-home help.  I have been resistant to it, for many reasons---it is not respite, but rather someone working with Janey AND us, I am not terribly into having strangers come into my house, I don't feel like it would be helpful for our family, and a bit of "I don't need someone telling me how handle Janey".  But at this point, we are ready for any help we can get, and what most convinced me is that she told us it's the first step to getting almost any other kinds of respite style help.  So...okay.  We'll talk to someone about it.

If Janey has another crisis, we will take her to Mass General.  The psychiatrist said everyone in the ER there is trained to deal with autism, and she herself has connections to Bradley Hospital, where Janey went before.  She said it's possible that if Janey truly needs help quickly, she might even be able to get her directly admitted to Bradley.  I think that is what most made me feel a burden had been lifted from me.  I think I've been living in fear of Janey having another hospitalization, and of feeling completely alone in that, like it would be the end of the world.  The way this woman talked so matter-of-factly about it melted a frozen place in me.  She said it like it would be something we could deal with, something that is not shocking or horrible or unspeakable.  She said it like she expects it to happen at some point.  It's strange that would feel so freeing to me.  But I think I've been trying for a long, long time to fit Janey into a mold that doesn't fit her.  She is NOT mildly affected by her autism. Today I somehow felt for one of the first times that she is not one of a kind, that there are actually protocols in place for kids like her.  I'm not sure I'm explaining this as well as I can, but having a plan for what might happen makes it not feel like the world's worth thing.

Janey and William at Noodles and Company, eating out!

We will take Janey to her first follow-up appointment at the center in a few months, and in December we will see a geneticist, something I have long wanted to do.

The rest of the day was very nice.  We did a lunch out at an upscale fast food place, along with William, and Janey was quite good.  Then she went for a long ride with Tony and William to a guitar store.  She was cheerful almost all day.  And I am feeling better than I have in a while, feeling like there is a place, there are people, there are systems set up for kids like Janey.  I've always know there were others like her, thanks to all of you, but this is one of the first times I've truly felt there are others outside the world of us hardcore insiders who really get what we live, and that is a good feeling.