The word we don't say anymore

Even when I started writing this blog, about 8 years ago, it was still marginally acceptable to use what I will now call the "R" word.  Now, the acceptable term is "intellectual disability".  In many ways, that's a better term.  The R word meant behind, and implied that those it referred to would someday catch up.  Intellectual disability doesn't have that implication.

In general, I am not too hung up on semantics.  Part of the reason is that it often takes quite a while for the general public to catch up with those in whatever community it is that creates the word.  It is sometimes easier just to tell people straight out---"Janey is ....."  I have done that, a few times.  Generally, I resort to that when I heard something along the lines of "But all kids with autism are really, really smart!  You just need to unlock it!  Have you tried (insert latest hip treatment here)?"

However, as the years go by, I realize that both the incorrect term and the more correct one are pretty meaningless.  Yes, in many ways, Janey is intellectually disabled.  There is no question there.  Despite many, many years of teaching, she doesn't know her letters, or numbers.  She can't read or write, or really use a writing utensil at all.  She speaks mainly in short, familiar phrases or echolalia.  If her IQ was able to be tested, it would be very low.  But those academic areas are just a small part of who she is.

I don't like to think about it, but the truth is, before I had kids, I thought having a child that was the R word would be the one thing I simply couldn't deal with.  I would guess a lot of people think that.  I felt it would be the ultimate tragedy.  Now, I can say with complete honestly that I was wrong.  In day to day life, Janey's intellectual disability makes little difference in her life.  It matters far less than her happiness, her health, her safety.

I also get now that there are many, many kinds of smart.  I often say to Janey "You're so smart!" and totally mean it.  She is smarter than I am in a lot of ways.  She dances far better than I ever will.  She is good at using the computer and iPad.  She can run a lot further than I ever could.  She has more sophisticated taste buds.  She is less socially anxious.  She is a million times more musical than I am.  She has a wonderful sense of humor.  She has more fashion sense than I do.  I used to think, honestly, when people said there were many kind of intelligence, they were saying that to somehow cover up the fact that whoever they were talking about didn't have "real" intelligence.  I hate it that I used to think that.  It's not true.

So, you might ask, why even admit, why address the fact that Janey does indeed have an intellectual disability?  Well, because it does make a difference in terms of what the future holds for her.  I believe in living in reality.  The kinds of smart Janey has are not the kinds of smart that will make her able to succeed academically.  She will never get a high school diploma.  She will never go to college.  And beyond academics, she will never hold a real job, or live on her own.  And I hear already a chorus, probably mostly from my own mind, saying "You are assuming a lot there!  Don't you have hope?"  And the truth is, at this point, I think reality is more important than hope, at least hope for things that there are a vanishingly small chance will ever happen.

There are kids with autism, including non-verbal or low verbal kids, who don't have an intellectual disability.  That is extremely important to keep in mind.  But I think it's also important to admit there are kids that are indeed intellectually disabled. Sometimes, I feel like at some high level, it might be almost a conspiracy to not admit that, because not admitting it lets us as a society not truly deal with a future that is coming.  Janey will need lifelong care, and so will many, many others like her.  We can hope that isn't the case all we want, but it's reality.  Until we admit that as a society, we will not be planning for it.

In a bigger sense, I wish everyone could realize what it took having Janey for me to realize.  Being intellectually disabled is NOT A TRAGEDY.  It's not something so horrible that we have to pretend it doesn't even exist, have to say that somehow it will magically go away in the future.  It's not the end of the world.  Janey is one heck of a terrific person, despite being the word we don't say any more.

My terrific Janey

One Man Show

I wish I could remember who is was, but someone at Janey's IEP meeting said that when Janey is not in a responding mood, working with her is like a one man show.  That was such a great line to describe how it can feel when you don't get any responses at all from her!  When Janey gets in that kind of mood, the completely non-responding mood, you can start to feel like a clown or magician or speech-giver working in front of a totally quiet audience.  You have no way of knowing if she's taking in any of what you say.  You can pull out all the stops, do everything she usually likes, and she just looks at you blankly.  That is one of the most frustrating of the states Janey gets into.

It was making me think about the many, many different modes Janey has.  That was a huge theme at her meeting---how inconsistent she is.  A lot of education for special needs is based on not moving on until the child shows competence at a certain level.  With Janey, one day she can blow you away with how well she knows a subject, while the next you'd think she didn't know a thing about it.  It is as extreme as what surprised me most at the meeting---that when Janey is in exactly the right mood, she can write her name "Jane", and in fairly good printing!  I was shocked by that.  On other days, she can't even seem to hold a pencil.

Janey's modes seem to come in groups.  For example, there's the talkative excitable mode.  That is when she seems almost manic---talking a lot but also very, very wild, sleepless, running around, reciting phrases.  Then there's the talkative relaxed mode, which is probably my favorite---when Janey is happy but not wild and talking a lot more than usual.  With the sad moods, there's loud sad, where she screams all day, and soft sad, where she is just not responsive, where she wants to be alone and sleep.  There's cheerful and cooperative, and there's cheerful and "Dennis-the-Menace"  Cheerful and cooperative might not involve much talking, but she will do as you suggest, and will do things like putting on her shoes when we say we say we are going someplace.  Cheerful and Menace is when she pours out bottles of soda or dishwashing liquid, where she runs away from us dangerously but laughing.  There's more moods than that, but you get the picture.

I want to think Janey can always absorb what is going on around, even when she appears to not be.  I've read about a few kids with autism that suddenly in their teens were able to communicate much better than in the past, and they said one of the main things they wanted people to know was that they were understanding what was being said even if they couldn't respond.  So even when Janey is in one-man-show mode, I am trying more lately to explain things to her, to tell her what noises are that she might be hearing, to read books to her, to take care not to say things around her that might upset her.  It can't hurt.

I worry a little about Janey getting bored, if she really can understand much more than she can demonstrate.  What if she can already read, at times, and we are over and over teaching her her letters?  What if she gets everything that is being said to her, and is sick of hearing my voice telling her the same lessons over and over?  But I think it's more likely that when she's in some of her modes, she truly doesn't know the same things she does when she's in a different mode.  Or more---she can't access the knowledge.  That part of her brain library is temporarily locked up.

I think if science could figure out this---why kids with autism can't always access what they know---it would be a huge stride forward in helping them learn.  I hope it's being studied, somewhere.

B....Glory Glory Hallelujah!!!

Janey's special ed teacher had written to me yesterday that Janey was starting to recognize letters. I hadn't seen it in action yet, so this afternoon I drew an upper case "B" on her iPad and said "Janey, what letter is this?" She glanced at it, and said with complete ease "B!" I of course grabbed her, hugged her, teared up. She looked at me like I was a bit daffy. William saw it too, and I called Freddy in and she repeated the feat, as she did again when Tony got home. I pushed my luck and tried a few other letters, but she had done enough showing off for today. This is the first time EVER I've seen her identify a letter.

Now I sound like someone winning an Oscar, but I want to say a thank you---a huge thank you to the teachers and therapists at Janey's school who have been working with her on letters all year. A special thanks to Jen and Mr. Ken! And thanks to the iPad, an amazing little machine, which would not work in isolation but which makes Janey WANT to practice skills for hours at a time.

My negative inner voice likes to pipe up at times like this---"yeah, she's 7 and a half and she named a letter. Let's put off the ticker-tape parade" But I'll tell that inner voice to shut up for tonight. I'm very, very proud of my girl.

Cheerier, and no miracles

Janey got out of her last crying spell fairly quickly. I'd say it lasted a week, and by last Friday, she was very, very cheerful---not manic, but cheery, smiling, talking---great. This weekend was terrific too.

Tony and I thought and thought and discussed and discussed and finally decided to get Janey an iPad, with the only respite money we've ever gotten from the state. We got a one time $500 last summer, and I had saved it thinking I might use it for the iPad, and then had pretty much decided not to, and then with all the 60 Minutes buzz, we decided to get it. It came down to it being worth a shot---that we figured it couldn't hurt, and we didn't want that money frittered away on small things for her. So we bit the bullet and bought one. I spent a long time looking up apps that would be good. I was a little surprised that the main communication app that was shown on 60 minutes costs in the hundreds of dollars. I can't afford that. But there are quite a few free apps, or ones that cost 1 or 2 dollars. I got both autism apps and toddler apps, as Janey functions at about a toddler level in terms of computers.

There's not going to be any miracles for her with the iPad, I know. She likes it okay, and from using it at school, can find her apps on it, open them and sort of run them. But interactivity is not her thing. She likes to watch passively. I didn't put any books that get read to you or videos on, on purpose, but the main thing she's done so far is go to Starfall, which she uses at school, pick the K and have it play a kangaroo hopping over and over and over and over again. I guess there's skill there---she must know what the K is, but it has no real usefulness---I don't think she could find a K in another context. She also likes a game called Fish School, where just by touching fish they rearrange themselves into the letters. What she REALLY loves is hitting the button that makes you back to the menu, and then rapidly hitting the app button she likes, so going back and forth between the menu and the app over and over. I got the program I saw on 60 minutes, to have her touch pictures of objects to see her receptive vocabulary, and when she was motivated feeling, she did very well. She knows lots of words, like "robot", "remote control", "harp" that she would never say, at least when she has 3 pictures to pick from.

And what is missing here is the desire to really communicate. The kids on the show that used the iPad well WANTED to communicate. Janey gets by, with her few words and her actions, and I don't think she has a strong desire to interact more than she does. I might be wrong. But I think that her mind just isn't terribly set up to want interaction with others most of the time. She likes people that she likes, she is not adverse to others being around, but she isn't dying to tell us all kinds of feelings or desires. I have no idea how to change that. I have no idea how to motivate her, none at all. Her motivation is at the level of finding that "K" to see the kangaroo, but she doesn't have the curiousity that would lead her to see what would happen with the M or the R. If I showed them to her, she might like them, and try them again, but there's no push to find out more. She doesn't want to please us, not that she wants to DISplease us, she just wants to live her life the way that feels like contentment to her. It's frustrating. But how can I change it?

Anyway, it's great she's been happy. It's great to see her smile. And who I am to judge what makes her happy, just because it's not exactly moving her forward?

Tiger Mother?

I just finished reading Battle Hymn of the Tiger Mother, about a mother that pushes her two daughter beyond the point of anything close to normal, in my eyes. However, it did get me thinking. I am probably the opposite in a lot of ways of a tiger mother---I don't push my kids very much at all. I want them to be happy, and discover their own interests, and have time to just think and relax---all of which are not at all tiger woman priorities. But do I do them a disservice, most especially Janey? Does she need to be pushed more---am I missing crucial times in her life to give her the knowledge and skills she needs to have? I don't think so, but I'm far from always right about those things. This morning I pushed her a little---trying to get her to pick the correct letter out of 4 I wrote on a piece of paper. She probably didn't do much better than chance, but I kept trying. She can be lazy---she often just sort of waved her hand over the whole paper, or picked a letter without looking at the paper at all. Is this part of the autism, or just her personality? I've never been very driven---I do well at things that come easy to me, but not at things I have to work at. I was never pushed much, but I don't think I would have liked to be. Perhaps I could have been a doctor or lawyer or something, but I don't think I'd have liked that lifestyle. But are those sour grapes? Hard questions.

And in contrast, I'm thinking about an area where almost anyone would have felt it was appropriate to push Janey, but which may have backfired and caused real problems. She had her physical yesterday, and I talked to her doctor about how she holds in urine for long, long periods. He was quite a bit more concerned than I thought he would be, and said that can be a true problem---that urine retention can cause urine to back up into the kidneys and cause kidney damage, and that he wants me to stop all efforts toward toilet training until the urine holding is resolved. He said kids like Janey sometimes can learn the first part of toilet training, holding in urine, but stall at the second part---letting it go on command, and the result is a serious problem. What bothered me is that I didn't follow my instincts with this one. I didn't think she was ready to be trained, but hey, she's 6, every book you read says you need to get strong with the training, that any child can be trained....so on. And I am sure she WILL be trained, but she wasn't ready now. I think about the times she peed on the floor and I made her help me clean it up and talked to her about how we pee in the potty. Pretty mild stuff, but she can sometimes be listening more than I know, and so she's been trying to do the part she CAN do---holding in the pee. If she isn't better in a month, we have to take her in for more testing to see if she had kidney damage.

I don't know what the message to me is here. Trust my instincts always? If I'd do that, the boys would never have been able to walk outside without holding my hand---they still would be.

It's all tough. Being a parent at all is tough. You made decisions every day that might seem minor, but might actually be hugely major. I'm a bit overwhelmed, but I'll muddle through.

Another year of kindergarten

Janey's teachers talked to me yesterday about having Janey repeat kindergarten. I had figured she would repeat a grade or two at some point, but was kind of thinking it would be later on, but it makes a lot of sense to do it now. The only thing that really got me was that she won't be with the same kids. I really, really love some of the kids in her class. They are used to her and good to her, and it's a big part of why I like inclusion. But I know it's a huge jump to 1st grade. If Janey wasn't making any progress at all, I would figure the grade didn't matter and would say I wanted her just to stay with her friends, but lately she seems to be making progress. She is recognizing at least the letter "A", is sometimes showing she knows the difference between 1 and 2, she has been very happy this last month, and so it all makes sense. I love her teachers and I feel happy they want to have her in their class again, and are not in a hurry to move her along. So I agreed to have her repeat. There is a tiny part of me which makes no sense but still feels upset she is "repeating a grade". It's stupid because obviously she is not really going to be doing the same work as the other kids, and she won't understand the difference and indeed will be happy to be in a familiar place, but I have to be honest and say it feels a little sad somehow. But I won't have to worry over the summer about how the next year will go.