Baby Bubbles

It's hard to explain exactly, but lately we are seeing something in Janey that is new and wonderful.  She is talking a little more, but it's not just that---it's a change in how she seems, in how she connects.  It's not there all the time, and it can be hard to describe, but when we see it, Tony and I look at each other in amazement.

I'll try to describe the latest incident.  Janey came home from school the other day very upset.  It seemed she was in pain---she was grabbing her belly and twisting around a bit.  It looked to us like gas pain, or pain from constipation.  We eventually gave her some Tums, hoping to help her feel better, and after a while, she did seem to feel much better.

As we were lying down with her at bedtime, we were talking about the Tums.  I said to Tony "I think they work by taking big bubbles in the stomach and breaking them down into little bubbles, so they can get out"  I wasn't talking to Janey, or doing what we sometimes do, talking to Tony in terms we thought Janey would understand, so she could listen indirectly.  Doing that often seems easier for her than talking to her straight on---it's like there is less pressure, so she hears without feeling pressured to respond.  But that's not what I was doing right then.

Right after I said what I said about the bubbles, Janey pointed to her belly and said "Baby bubbles?"  She said it exactly like most people would reply, in a questioning voice, like she was looking for confirmation she understood correctly.  Tony and I looked at each other in amazement.

This might not sound like a big deal to someone who doesn't know Janey, but it was something in several ways we have hardly ever seen.  First, she responded with appropriate timing---no delay.  Secondly, her tone was right on---not echoed sounding or sing-song or anything else, but just questioning.  Thirdly, she used a word we hadn't used, "baby" instead of "little"---so she wasn't quoting or repeating, she was using a synonym to clarify.

It's this little kind of thing we are seeing more and more of.  Janey seems to be, for the lack of a better word, tracking our speech more.  She seems to be following what we say and processing it in real time.

Another story---kind of a funny one.  Janey's uncle Joe often asks her "What's my name?"  It's something he did with all three kids when they were little, as a way of making conversation.  With Janey, he's been asking her that for years.  She replies or not, depending on her mood.  However, the other night, Tony was out with Joe and Janey in the car and I got a call.  Tony said "Are you sitting down?  You won't believe this"  What had happened was that Joe asked Janey, for maybe the ten-thousandth time in her life, "What's my name?" and Janey replied "You forgot your name?"

That answer---wow.  We joked that she must have been sitting on that reply for years, waiting for the right time.  It's an amazing reply to us---it shows she understand the meaning of the word "forgot", that she gets that someone would ask a question to get information, and most of all, it breaks away from a script that has been years and years in the making.

For a long time, Janey's speech didn't progress.  Our theories of why it suddenly is---Janey's having a good year of school and a good year of health.  Things have been steady and fairly upbeat.  She has a great team at school---a terrific teacher, an ABA worker we get super reports about, and a speech therapist we met her at IEP meeting that seems to get Janey in a way that we haven't seen in a speech therapist for a long time.  Those elements together, along with Janey herself maturing and learning, seem to have prompted progress where we hadn't seen it for years.

I hope very much this speech and understanding trend continues.  I am not being pessimistic but rather realistic in saying it very well might level off or regress after time---we've seen that pattern often.  However, knowing that she CAN talk and understand in the way she's been showing---it's wonderful.  It will keep us working.

In the larger picture, I want to get this out there partly to give hope to others.  There is so much emphasis on early intervention, on "crucial stages".  There is always a feeling that the necessary therapy has to happen RIGHT NOW, or never.  Janey is the proof I need to say that isn't necessarily the case.  She's making progress now, at age 12, at a rate we haven't seen since she regressed at 3.  It might not be the kind of progress that you read about, the "miracle cures", the breakthroughs, but it's progress non-the-less, and we couldn't be prouder of her.

The days and weeks and months and years

I'm feeling low tonight.   Janey has been fairly good.  She had a great week after restarting the medication, a honeymoon period we often see with something new with her.  Now, she is still fairly happy, but the screams and repetitive requests are sneaking back.  But it's more than right now.  It's how the days and weeks and months and years have been, and will be.

I'm thinking a lot lately about life getting away from me, about all the things I can't do.  I've been wanting to get up to Maine very much, where my parents live and where I grew up.  I want to see my parents and friends there, and just to be in coastal Maine in the summer---something that is one of the best things life on this planet has to offer.  But I can't.  I can barely go to the next room a lot of times.  Any time off Tony might have had for this summer was eaten up by Janey being in the hospital, and he has to work and I have to be here for Janey.  Taking her with me---I tried that last summer, and it didn't go well.  It's the opposite of a rest.  Summer school is a great respite for the time she's there, but then the day is over and again, I am basically trapped.  As is Tony.  There are so few places we can take Janey.  We don't get invited places much.  I can understand why.  If you host Janey once, that's probably about all you can take.  She isn't safe around small kids, she will get bored and scream after a short visit, she'll open your fridge and take things out, she'll find dangerous stuff you thought you had hidden well, she'll wet through her clothes onto your rugs or furniture---all things she's done.  And so we have become, over the years, more and more isolated.  I was thinking of summers past, with the boys.  We visited people a lot, we went to the town pool, we went to the beach, we went into the city.  We did a lot.  And now---we do nothing.

Most of the time, I do okay with doing nothing.  I'm pretty good at keeping myself entertained.  I have my garden, I have books, I have my kids and my husband, I have the Wild World of the Web, I have music, crafts, TV...I'm okay.  But lately, as I face down being 50 in the spring, I think about the things I can't do.  My parents are getting older, and I worry about them.  My nephew Zeben lives on the other side on the country, and I haven't seen him in years.  I have friends I haven't seen in years either, that aren't even that far away.  I am living a life that is smaller and smaller.

Maybe, lately it seems like there's a turn---a turn from thinking "This is how it is right now with Janey.  I can handle this on a temporary basis" to thinking "This is how it is for good.  This is the rest of my life."

This is a self-centered post.  I try not to be that way.  I try to focus on Janey.  But I'm failing at that today.  I'm thinking just about myself.  I would do anything for my children, all of them.  But somehow, I feel like who I am, the me that has the energy to be a good mother, to be creative and proactive and caring, is being chipped away at, by long days at home, long weeks of hoping Janey stays healthy and happy, long years filled with screaming and biting and progress that is so slow that it sometimes goes backwards.

Generally, I have little patience with myself for feeling this way.  There is something in me that tells me "You had kids.  There are no guarantees.  You are her mother, and you are lucky to have her.  You shouldn't go complaining about what life with her entails"   That is true.  But other times, I do a comparison of my life with Janey to the life with the probably 999 out of 1000 other kids, the kids that have friends, can go to camps and lessons and the homes of extended family, the kids that get older mentally, the kids that will someday have a job and maybe a family, the kids that might some day help their parents when the parents get old.  The kids I am lucky enough to have two of.  And in these darker moments, I admit to myself that although being a parent is tough for everyone, it's especially tough for our .1%.

I will get past this mood.  I don't have a choice.  I write about it, as I write about most things, for two reasons.  It helps me to write it out, to work out my feelings---that's the first reason.  The second reason is that I know there are others like me, and I want them to know they aren't alone.  We are out here.  We might never meet in person, for the reasons I talked about here, but it helps to know there are others living this life.