Janey is...TWENTY???

 It's hard to believe, but it's true.  My sweet Janey is now 20 years old.  Her birthday was in August.  Even though obviously I knew it was coming, it still seemed and seems impossible.  

I admit, it's been a little bit tough in some ways to think of Janey as being 20.  I guess it's hard for any 

Janey on her 20th birthday

parent to ever believe they have an adult child, but of course with Janey it's a little different.  She is in many ways still like a toddler, and she always will be.  

A few weeks ago, I had the absolutely wonderful privilege of getting to meet in person my grand-niece, who I consider a granddaughter.  Olive is almost 3, and to say I fell in love with her is a severe understatement.  My three kids were all so amazing in their own ways, but everyone says that being a grandparent is a whole new level, and they are right.  Sitting and playing with her---Tony said he didn't think he'd ever seen me happier.  

I realized, after spending delightful time with Olive, that in some ways I've avoided being around children other than Janey much over the past many years.  I don't ever want to compare Janey to other kids, and I still don't.  But seeing how much Olive could talk, and how clued in she was to emotions, and people, and how quickly she could learn new things---it did highlight a little what Janey's limitations are.  Not that I didn't know them---I did.  But I saw that I had very much kept myself from thinking about them as much as I might have.  And maybe now I'm ready to.

Janey being 20, being absolutely an adult, in some ways makes it easier.  She is what she is.  In the past 3 or 4 years, I don't think she has changed much, or honestly, learned a great deal that is new.  Her interests change a little here and there, but the core Janey is the same.  Her talking used to come and go a lot more, but now, it's steady, and at a bit lower level than at a lot of points.  She makes requests, and that is mostly all.  There is less echolalia, and next to no just commenting.  I am very glad she can make requests, but boy, would it be something to get to hear her tell us what she is thinking, or what is bothering her when she cries, or why she is very excited the nights she stays up all night.  And I don't think we ever really will know those things.

As the years have progressed, sleep has emerged as the biggest challenge with Janey.  In the last few years, it's not just that she sometimes doesn't seem to need to sleep at all, it's that this cycles with periods where she sleeps a huge amount.  She'll go a few weeks sleeping up to sometimes 16 hours a day, and then have maybe a week of more typical sleep, and then go into a few weeks of very, very little sleep.  Nothing external seems to cause either one.  You might recall that in the past, we never gave Janey chocolate as that kept her awake, but that doesn't seem to happen any more, which is good, as Janey loves chocolate!

Today---Janey and a donut!

And when she sleeps so much, she doesn't seem sick or depressed---just sleepy.  The up all night times are tough, but not quite as tough as they used to be, as Janey seems to make less demands on us during the night.  The sleepy times make it hard to do things with her---she slept through huge parts of the days Olive and her parents were here.  

As Janey changes less, as she is settling into who she is as an adult, I feel like my worries and concerns, and sometimes my anger at the world, is changing more.  We worry, as do so many parents in the US, what will happen when Janey is 22 and no longer able to go to school.  Janey loves school, and this summer, at the start and the end when there was no school, she didn't do well at all.  We have registered her with the state and she has been determined eligible for services for the severely disabled, but from what we have heard, labor shortages are making it very hard to find a program for those turning 22.  And if we do find a program (a day program is what we want), can we trust it as we trust the schools?  I've read a few horror stories about abuse of disabled adults lately, and they make my blood run cold. 

I think the tides are turning a little when it comes to those with what is now called severe or profound autism.  I hope there is more awareness than there once was about people like Janey.  Even so, sometimes I feel fury at money being spent on so many other things and so little being spent to help people like Janey.  I truly feel a lot of it is that people like Janey don't have much of a voice---they are unlikely to vote, unable to self-advocate.  And the money that there is so often used for research or studies or support groups, not for direct care.  I admit I can feel a white hot fury at hearing about some million dollar research study about autism, or yet another support group.  I could go to a support group every day of the week, I could submit Janey's genes to any number of research studies, but if Tony and I want to have a night out, there is no program for that. 

I will do my very best to keep writing about Janey as long as I am able.  A big part of that is that I want to let people know there are people like her---ADULTS with severe autism.  To the others that have walked this path with me with their own girls (and boys), so many of who now are also hitting those adult years, and to those new to this journey---I want you to know you aren't alone, as you have helped me know I'm not alone.  

And to Janey, I will read this next part to you.  I don't know if you will understand it, but I hope you do.  I love you so much.  You are an amazing person, a person who deserves to have a meaningful, interesting, varied, happy life.  Thank you for being my daughter.  My adult daughter.  My amazing, beloved, beautiful, unique Janey.