Top Five Things Not to Say to Someone With An Autistic Child

5. Have you tried that diet that cured Jenny McCarthy's son?

4. Oh, she's going to be fine. Every kid follows their own timetable. Einstein didn't talk until he was 38...

3. I don't know how you do it. I couldn't possible deal with something like that.

2. Oh, I know someone with autism. They work at MIT. People with autism are so smart and have amazing talents.

1. You know, God saves his special children for special parents. Just think of her as a gift from God.

Whining, Crying, Talking

Janey has had a mixed morning, and it's only 7:30. She woke up about 4:30, in a mood, crying and whining and carrying on. I had had a restless night, with her as usual sleeping with me (she doesn't care for her bed and rarely sleeps there). I don't mind her in the bed, but she brought along a piece of dry toast last night, left over I guess from a evening snack, and it crumbled all up before I knew it was there, and made for a very uncomfy sleep. Then she filled her diaper while she was sleeping, making for a smelly night. All lots of fun. Then in a middle of this lovely morning she had one of her talking spells. They are so otherworldly sometimes---just out of the blue, like she's telling a story. She talks in a totally difference voice than her usual limited talking, more clearly and with more expression. This one went something like "See my necklace? I have a special necklace. The necklace is stuck, because my head grew bigger. I can't get it off." She didn't have a necklace on, and most of the words she never, ever uses in regular talk---in fact, there aren't many words she uses in regular talk. I don't know if she heard a story about necklaces, or if this is just something she was thinking about. I should just keep my mouth shut when she talks, because I can never resist trying to engage her about what she's talking about, and that just makes her shut up. I wish I could tape one of these monologues, but they happen about once every 4 months, so I'd have to carry a taping device around with me at all times. Now she's back to whining, saying her all time favorite phrase "I want a ba-ba!" and twirling in circles. She's my mystery girl.

(note from the future---8/30/13)  Reading this now, I'm quite amazed at the talking Janey did.  That would still be one of her best talks, assuming the necklace talk was original and not quoted, and I don't think it was.  It's making me realize her talking never really improved over the years, just ebbed and flowed.

Manic nights

The last few nights have been what I call manic nights for Janey. She has spells of those now and then. She sleeps very little, and spends large parts of the night running around the house, singing to herself, turning lights on and off, waking us up. If we try to contain her in bed, she screams without stopping for hours. It's almost impossible to deal with these nights. I feel totally hung over after one, as I do today, and they come in groups, and tonight shows all signs of being another one---it's close to 9 and she is not a bit sleepy acting, and that is after sleeping probably 2-3 hours last night. She was fine all day, cheery and happy mostly. It's times like these I do consider seeing if she really is bi-polar, and giving in and getting medication. I talked to her pediatrician about it. He is not terribly interventionist, which I like, but he said that some current medications aren't too bad, and that bi-polorness is treatable and if she gets worse, it might be worth really trying to get it treated. I am still skeptical. She is only 5. Just recently I've read about how the new DSM isn't going to even recognize bipolor disorder in kids. I think she's cyclical, for sure, but there might be other reasons. Maybe it's a vicious circle as when she has one of those nights, we are all thrown off and half crazed from lack of sleep, and that affects her into the next night. Sometimes the manic laughter is almost as hard to take as the crying. Some days and nights like this the future looks long and very, very tiring.

Things Janey and I enjoy

I've been trying lately to do more with Janey that we both enjoy. When I find something that we can both enjoy, without me pushing learning or me just doing what she wants to make her happy, it's wonderful. There are a few activities like that. One, as I've mentioned before, is music. When a song is on that we both like, the smile and happiness on her face says it all. She doesn't have to be able to talk to tell me how she feels. We both like big band music, show tunes, country with a beat---a lot of music that the boys in the family don't like as well, so it's great to have a girl to share with! She also loves being outside and wandering around as I did at her age and indeed my whole childhood. I spent as much time outside as I could, walking along the shore in Maine, exploring the woods and just being in the fresh air. Living in the city, it's not quite the same, but Janey loves even walking around our hilly, small back yard. It's been hot lately, and tonight, it was windy and cooling down, and off and on rain. Janey was fussy, so I took her in the yard and we both just enjoyed the wind and cool air, and let the rain fall on us. The look on her face was just like mine. It felt great. She also enjoys a good book. She has her own tastes, and I can't predict what books she will like, but if she DOES like a book, she likes it over and over and over and over. She devours it, like I would do with books when I was little. Except in her case, sometimes she literally bites the book, but still, it's similar. Right now she likes nursery rhymes and fairy tales a lot. It's fun because there are lots of different versions of both, so they can feel familiar without being exactly the same.

My family, both immediate and extended, are such verbal people, such talkers, that it's hard for me sometimes to just let Janey's face and actions talk for her. She's never said to me "Gee, I love music and nature and good books", but I know she does, and I need to enjoy that with her. Some people say she looks like me a little, although she's prettier than I ever was, and it makes me feel happy to think her personality might be a bit like mine in some ways too.

Trying to understand the talking

Janey's talking is one of the trickiest things to understand about her. I feel very, very lucky that she does talk a little, especially because it seemed at a point that her talking would leave completely during the worst part of her regression around when she turned 3. It never felt completely, but it's very hard to explain, especially to anyone outside our immediate family. I have figured out she talks less even at school than home, as they are often very excited to tell me about something she had said that I've heard a lot at home. She has a good speech therapist, but I am not sure anyone really knows what to do with her. Until about 5 months ago, her speech she did have was quite clear, but now it's not---it's often hard to understand. The most common phrases from her follow the pattern "I want...."---I want a baba, I want cheese, I want Kipper, I want light on (which usually means light off). The only other type of sentence we hear consistantly is something like "Mama is getting me a baba", kind of a variation of the simple want, saying what she hopes will be happening soon. She will sometimes give single word answers to our questions if she is being rewarded, like with M&Ms---we point to a picture and she says what it is. Sometimes she surprises us a good deal with knowing pictures we would not guess she knows. But she often guesses within a category---for example, if we show her a triangle, she will say "Circle" or if we show her a cat, she will say "dog". It makes me think she has trouble retrieving the exact word she wants---she knows it's a shape, or an animal, but not which one. It's the same with numbers and letters---she seems to know what is a letter, but will guess at the letter or the number. I think she knows the symbols, as she usually guesses a letter when it's a letter and a number when it's a number. If we give her the answer, then she guesses that for the next card always---if we tell her it's an A, the next letter will get called an A.

And then there is the rare fluent sounding talk, which is always self-talk. She will do this when looking at a book, or sometimes when walking around in circles in the yard or something. This kind of talk is in low tones, and hard to hear. It's usually a mixture of song parts, nursery rhymes, phrases she's heard, etc. It doesn't make any sense, but it has much more of the sound of regular talking than any of her other talk. I love hearing it, although it's not really useful---it's like she's playing back clips of things she's heard. Tonight it was lots of nursery rhymes, as I've read her a lot lately. If I listen too hard to her when she's talking like that, or ask her any questions, she usually stops talking.

Once in a while, she will do more simple echolalia, where she just repeats a phrase she's heard someplace. This is quite often something she probably heard with lots of emotion attached. One of the most upsetting ones is "f***ing b***h" I really don't think she heard this at home, although I certainly can't rule it out completely. I thought I was hearing wrong the first time I heard it, but I've heard it quite clearly several times since then. I hate ever telling her not to say something, but I do say "that's not a nice thing to say---those are words that hurt people" when she says that. I'm sure she doesn't really follow that and could care less, but I have to say it!

So it's hard to answer people sometimes when they ask if she is verbal. Yes, she's verbal in that she CAN talk. But in terms of answering questions (except under reward sessions) or telling us about anything that has happened to her, or understanding more than a very few things we say to her, she's not really verbal. Outside the house, when someone says "Hi" to her, or asks her name, or how old she is, they will NEVER get any answer. At home, actually, usually not either, although she can say what her name is. Every day at school, lots and lots of people say "Hi, Janey!" as she walks in, and she never answers. I'm never sure if should answer for her or not. I've started just smiling and not answering.

If I could figure out how her mind works in terms of retrieving words, and could teach her to just answer a few social questions, I think it would help her a lot, but I have no idea how to do this, and I don't think anyone else does, either.

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!