First week of summer school

I can't begin to say how happy I was to have Janey back in school, summer school.  I hope I don't sound like the world's worst mother saying that, but boy, do I love that school bus showing up and taking her off to school land for a while.  Luckily, I think Janey feels the same way.  She was more than ready to go to school again, after a long time off.  Her school year ended abruptly in May, with a bang and a burst---appendix, that is---and she was getting bored.

Summer school this year is only 4 days a week, so Janey was home today.  I forgot to explain to her in the morning why she wasn't at school.  She got angrier all day long, after about a week of model behavior, and finally, I realized that as happens so often, she had somehow counted the days and felt she should be in school.  She of course can't express this, and I feel stupid that I don't always remember to talk to her about it, especially after how Veterans Day last year affected her.   Around two, I finally said "I know you think there should be school today.  But summertime school is only 4 days a week.  On Fridays, you will be home with Mama"  Almost right away, she calmed down.

It's times like this I wish so much that Janey could communicate more.  I wish I knew how to unlock her voice, or if it is unlockable.  Her talking ebbs and flows, but overall, it never gets better.  She talks about as well as she did at three, and not as well as she did before her regression, when she was two.  Sometimes, that just doesn't make sense to me.  I know she knows more words than she did then.  She understands so much, and shows her understanding by following complex directions.  I can say something to her like "if you want to go in the car, go get your shoes and then bring me the phone so I can call Daddy"  She'll do all that with ease, and even directions with several more steps than that.  When she is in the mood and I give her pointing vocabulary tests, where she can pick from four pictures, she knows all kinds of words like "castle", "raccoon", "padlock", "helicopter"---to name a few I can remember.  She doesn't say them, but she knows them.  And she has not much trouble pronouncing words.  So why does this never translate into more talking?

For some kids like Janey, speech apps on the iPad help.  They don't, with Janey.  She hates them, every single time I've tried them or anyone else has.   Because the iPad talking is indeed talking, the same issues come up that do with verbal talking.  She either can't form the thoughts she has into words, to enter into a keyboard or say out loud, or she doesn't want to.  It seems sometimes like every word she says costs her a great deal of money, and she wants to save her money.  But this leaves us so often with no way to know what she wants, what is upsetting her, what is making her happy, even.

On days like this, when Janey and I are alone all day with nothing to do, I try hard to sort of shadow her, to try to figure out what she likes to do.  I sat with her for a long time today as she watched TV.  She knows a little how to work the Amazon Fire TV box that lets her watch shows on streaming services, but she needs help with the passcode sometimes (which we need, or she buys shows!)  Instead of trying to get a little done in between her need to change shows, I sat with her and immediately responded to anything she wanted done.  What she wanted was to watch the beginning of a certain episode of "Word World" over and over and over.  It was one where the word friends played baseball.  I have no idea what the appeal is, but there must be something in it she likes.  Usually, I try to encourage her to view new episodes of shows she likes, or new shows.  She resists this a great deal.  There must be some reason certain episodes appeal to her so much, and it's another mystery to add to the many she presents to us.

I tried at points today to get Janey to branch out with activities, but as she gets older, she seems to have less interest in a lot of things.  She used to love to be in the wading pool, but today, despite me giving her several new pool toys and trying my damnedest, she would stay in it only for ten minutes or so.  I tried reading to her over and over---she politely closed the books.  I pulled out her toys and knocked myself out trying to get her interested, and she gently took them and put them away.  What she likes lately is two things---watching videos and going places in the car while listening to music.  That is another reason I love having her go to school.  I know she's at least doing something different there.

I'm rambling on here a bit.  It's how my mind feels lately.  I feel out of new ideas about Janey, and fairly low on energy.  Her hospitalization took a lot out of her, and us.  I think for now we are so happy to have her healthy that we have a slightly different perspective on things than we did before. We are happy to have her here with us, and we want her to have a life she enjoys.  There is so much about her we don't understand and can't control, and the older she gets, the more likely it seems she is becoming the person she is going to be for life.  We need to find a way to let her live the best life she can while we also try to live the best lives we can.  That's going to be a challenge, but we are happy to have her with us to work on that challenge.

Birthday ups and downs

Janey is nine today.  Most other years, on her birthday I wrote sort of a summing up of how she was doing.  Today, though, I thought I'd write more about her birthday itself, as a way to share the ups and downs of special days with a child with autism.

The last few days, I've been talking a lot to Janey about her birthday, trying to get her prepared.  I knew they were having a party for her at summer school, as it was her last day there and her birthday, and I wanted her to get used to the idea.  I sang her the birthday song quite a bit, which she sometimes has a hard time with, as do very many kids on the spectrum.  I think with Janey, part of it is that the song is often sung off-key, and that upsets her a lot.  But it's also a time when all attention is focused on her, and that can be too hard, too.

I decided I wanted Janey's birthday to be as low-key as possible, and wanted to do things she would enjoy all day.  The time while she was at school, I planned to focus on her brother, who shares her birthday.  He turned 16 today, and I always want to make sure his birthday is special as well as Janey's.  As their needs are obviously very different, it can make for some tough decisions.

Janey started the day in a mood.  She didn't like the clothes I tried to put on her, and threw a tantrum and screamed.  I decided what clothes she wore was less important than her having a calm day, so I let her choose her clothes herself, and she made a pretty nice choice, and was happy by the time we left for school...  While she was at school, the rest of us went to the mall, and got Freddy his present, a couple pairs of sneakers.  I managed also to get a few presents for Janey, at a nice store at the mall called Marbles, the Brain Store.  I went there because I'd read they have a lot of toys that work well for autistic kids, and they did---most for higher functioning kids, but I got Janey a very cool circle of wooden balls of various colors, which is sort of a big fidget toy, and also a wooden robot that can be folded up into a square.  No pieces to lose with either, they look nice and they are something she can play around with.  I felt very happy to find them.

Then we went to pick up Janey, and it seemed she had a great day.  They really did it up for her!  Here's a picture...

 of Janey with her teacher and one of her paraprofessionals.  They gave her cake, pizza, a balloon, a bag of presents---she is a lucky girl!   She left the school happily, walking along with Freddy, her birthday twin.

Then we went to a friend's house.  She wanted to give a present to Janey and Freddy.  That was probably the high point of Janey's day, as she loved the present, a giant pillow (thanks, Christine!!).  She was happy there, but we just stayed a short time as we were headed to the store for cake.

Janey was good at the store and picked out her own cake, and we headed home for a little family party with just us and Janey's uncle.  That is when things started to go downhill.  I guess Janey had had enough birthday.  I think she was tired, and just wanted cake without all the ceremony.  We did the candles and sang, and I tried to get a picture of Janey as we sang.  I have always vowed not to take pictures of Janey as she cries, but this time, it just happened.  I have been trying to decide whether to put this picture on here, and decided I would.  I've always tried to be honest when writing, and Janey's screaming and sadness are a huge part of her life.  It would seem kind of untrue to her to only post happy or neutral pictures.  So here's Janey, very sad about the birthday song and candles...

Janey actually cheered up a good deal in just a minute after that, when it was finally time to have the cake.  She likes blowing out candles, and she did her best, with Freddy helping too, as they shared a cake for the first time ever!  (I got a second cake for Freddy to have at a party with his friends later this weekend)

After the cake, Janey had had it.  We were upstairs at my brother-in-laws for the cake, so I took her downstairs.  She screamed and cried for quite a while.  Finally I thought to say to her "Your birthday is all over now!" which is not what you'd think the birthday girl would want to hear, but she looked hugely relieved!

It's so hard to know how to handle occasions like birthdays with Janey.  I wonder sometimes if it were just Janey's birthday, and not Freddy's too, if I would choose to almost not celebrate it, or keep it so low key as to almost not be detectable.  But somehow that doesn't seem like the right thing to do.  I want Janey to have memories of a cake, of presents (I gave her the presents just a little bit ago, unwrapped as she prefers, and she looked them over, but wasn't quite ready to be interested in them)  She certainly loved the pillow, and the cards she got, and she seemed to like the party at school.  Maybe overall she didn't cry much more than a lot of days lately, but it felt like more because I had been wanting so much to make it just a happy day for her.  But that is often impossible.  I guess I just can do what I always try to do---do the best I can and hope for the best.  

Happy Birthday, my sweet nine year old girl!  

Progress Despite It All

Although this summer has been tough in many ways with Janey, I'm realizing it's also been a summer of huge progress.  The two may be connected.  The last week has seen a big decrease in the screaming and crying, and I'm able to relax a little and take stock of what Janey has been doing, and it's quite encouraging!

First, her speech.  She has been talking in ways we haven't heard before, or have heard only on very rare occasions.  A few examples---the other day, Tony took Freddy and Janey to Chipolte on the way home from getting Freddy at work.  After they ate (and Janey was good for eating, progress in itself!), Janey said "Do you want me to clear the table?"  All mouths dropped open!  That's usually what one of us says after a meal there, but who would have ever guessed she'd say it!  Tony gave her some napkins to clear, which made her very happy.  Another time we were all in the car, discussing our favorite foods (not an uncommon topic in our food obsessed family).  All of a sudden, Janey yelled out "Indian chicken!"  She actually joined the conversation and told us her favorite food!  A few nights ago, she craved some Chinese rice (fried rice) and Tony ordered some.  We all walked to the square near us to pick it up, and on the way home, Janey jumped up and down excitedly and said "I'm almost having Chinese rice!"  I know I've NEVER heard her use a word like "almost" correctly before.  We were thrilled.

Janey has also started to seem to differentiate between family members more than ever before.  Usually in the past, it seemed like we were fairly interchangeable to her.  But this summer, we have been assigned roles.  If  Janey wants Netflix or a video, only I am able to put it on.  But if she wants food, that's Daddy's job.  Last night as I opened the fridge, she sneaked out a jar of mayonnaise, and immediately took it over to Daddy to see if he'd give her some, sliding past my attempt to grab it.  She knew he was far more likely to give in on that one than I was.  She has also been calling the boys by name.  The other day, William came into the back yard where she was playing, and she called out loudly "Hi, William!" which made him very happy!

Janey is also showing an interest in drawing and writing, which is totally new.  She has never drawn anything recognizable, but she might come by that naturally, as neither have I, really!  But I got her a sketch pad the other day, which she was eager to use.  Below is the very first thing she wrote in it...

Yes, it's a J!  I was so happy.  You can see an example of my artwork in this next picture, where I asked Janey to put the mouth on a face...  (I drew the face, and Janey drew the mouth)

I was happy she got what I meant, and added the mouth quickly!

Lastly, Janey is showing signs of wanting more independence.  This one is harder for me to accept.  For her whole life, Janey has held my hands when outside anywhere but in our own driveway or back yard.  She has been just too prone to running away or doing impulsive things for me to let go.  However, lately she is constantly dropping my hand and wanting to walk on her own.  I started giving in, slowly at first, but I'm realizing something amazing---she is staying with me!  She's walking on her own at my pace!  It still makes me very nervous, but she is almost 9, and it makes sense she wants to not always be holding my hand.  She loves to do things like walk along a crack in the sidewalk or run her hands along trees or walls, and now she can do that.  This morning, as we walked to summertime school, we got to a place where we have to walk next to buses.  This is where I usually grab Janey's hand, and as I was about to, she took my hand.  It showed me she is aware of safety and her surrounding more than she ever was, and knew we were in an area she needed help with.

So, despite the very tough times here and there that this summer has brought, I hope, and I shouldn't even write it to not jinx it, but I'm knocking on wood---that at some point in the future we may see the summer of 13 as a turning point.  I hope so---I dream so.

Small Triumphs

I won't lie---the last week has been a tough one.  Janey has been crying a great deal, and has starting with the biting of her arm again, and added a new fun one in---scratching herself badly.  I cut her nails short, and at summertime school, they are keeping a jacket on her all the time for the arm biting (they have AC) but the crying---it's tough.  We really don't know what's up.  It's probably just one of those swings Janey has at times---a bad few weeks, a good few weeks, a great few weeks, a hellish few weeks---and we are never sure why.

But today, there were a few small triumphs, in the middle of a day of screaming and crying.

The first was a good library trip.  Last time at the library, which I wrote about, Janey had a fit.  Today, after picking her up at school, I told her right away we were going to the library, but I was going to just get books at the desk this time, no walking into the stacks.  I also told her if she could be a good girl in the library, we'd get a treat at the CVS, whatever she wanted (the CVS is next to the library).  Janey cried most of the way to the library, so I wasn't hopeful.  But once we got in there, she truly held it together and didn't cry at all, and stayed with me and was perfect.  So off to the CVS we went.  I was thinking that one nice thing about Janey vs. "normal" 8 year olds is that I CAN tell her she can get whatever she wants at the store, because she won't decide that what she wants is all the toys, or a hugely expensive odd thing like an "as seen on TV" wonder knife or something.  She walked right in to the store to the area where the chips are, and for the first time I remember, didn't immediately grab the thing she wanted.  She stood and looked at all the chips for quite a while, and then picked a bag of sour cream and onion ones.  I felt like she really understood the whole deal---the behaving at the library, the treat and even the picking out of the treat.  It felt nice.

When we got home, I had some packing of books I'd sold that I very much needed to do.  I put on The Goofy Movie for Janey, her current favorite, but after watching it a bit, I turned to see she was out of sight.  I was in the middle of taping something, and actually finished the taping---a risky 20 seconds or so---and then went to find Janey.  I found her in the bathroom, and I started looking right away for her usual mischief---toilet paper all over, toothpaste squeezed out, her trying to take a bath with clothes on---but inside, she saw she was wiping herself, after very, very successfully using the big girl potty for what sometimes becomes a huge mess.  I was thrilled.  She has never used the big potty for that on her own before---we've caught her about to go a few times and taken her there, but this was all her.  She got a big high five (after hand washing).

Even though most every moment not described here consisted of crying, I decided to take a risk and go to the post office with her, as I had things that very much needed mailing.  I told her that if she could be good at the post office, we'd get a doughnut.  That was probably too much for today.  She cried most of the time at the post office, even though it was very quick there and the clerk knows her well and was very sweet to her.  When we got out, she looked at me with tears in her eyes and said "David Donald Do?  Dreamed a dozen donuts and a duck dog too?"  which is a quote from Dr. Seuss's ABCs.  I got her the doughnut, mostly for understanding what she was supposed to be doing and what the reward was, which is a step forward.

I have been trying, in one of my many tries at a new way of thinking or a new strategy, to see the crying as just a background thing---not something that has to be fixed or dealt with right away.  A few times today, I told Janey to try hard to calm down, and then walked away to give her a minute or two to do so.  That goes against so much of what is my instinct, but it seemed like she was trying.  I praised her a lot for even a minute of non-crying.

Maybe I'm able to see the good in today because it's the weekend, Tony is home for a few days to help, and Janey is going to the respite house for 6 hours tomorrow.  I'm going to keep trying to pick out the good from even the tougher days.

Deciphering Janey's Day

One of the most frustrating parts of having a child who is not really usefully verbal is never hearing about what she does when she isn't with me, firsthand anyway.  I adore hearing about my kids' days, but with Janey, the time we aren't together is usually a mystery to me.  I hold onto any tidbit I can get from teachers or paras or therapists, but the parts that are usually the best to hear about are the little incidental things, and it's also always telling what gets chosen to tell me by the boys.  You can guess a lot from what names you hear a lot and what classes are never described.  Janey, though, remains completely silent about her school days almost all the time.

This summer, though, she is saying a bit more on our rides home from summertime school.  It's not telling me about the day, but it's echolalia that I am pretty sure comes from school.  However, out of context, it creates puzzles that are near impossible to to solve, although it's fun to try.  Today, she kept yelling out "Roll the dice!  Okay, TWENTY FIVE CENTS!"  and at one point, "Have you got any chips?"  I'm assuming it was some kind of math game, and not that they were teaching the kids some low-level gambling.  I've also heard a name over and over---Elliott.  I was trying to figure out if he was a character on TV or a video, or a real live person.  That got solved today when I saw a little boy as I went to get Janey, sitting with her class, with an "Elliott" name tag.  That was pretty exciting to me---it was one of the first times I've heard from Janey about a child in her class that was a name I didn't already know.  I've heard quite a few quotes with his name is it..."Elliott!  Don't do that!  That's not funny!" (followed by Janey laughing her head off, as I guess to her it certainly WAS funny) and "Elliott!  Come back over here right now!"  I couldn't resist, as we were walking out, saying to Janey in that tone that comes from who knows where "Is Elliott your BOYFRIEND?"  If I were writing a book of parenting advice, I would certainly say not to tease kids that way, but hey, I'm human.  Janey is the 3rd child out of three I've found myself teasing about the opposite sex.

One of the most wonderful things teachers can do is to tell parents of special needs kids about what their kids do during the day.  I've been pretty lucky that way.  One thing I'm very conscious of at school is not asking for special treatment.  I know in the mornings and afternoons, teachers are getting lots of kids in and out of classrooms, and I try hard not to take up their time then asking questions.  But I hope other parents, and teachers, do understand that what they tell me or what I tell them is often the ONLY way communication goes back and forth, unless it's something written down.  Just a few times, I've gone to school different years and found every other kid wearing some special thing for some special day, or I've found out after the fact that a party date had been changed and Janey hadn't brought what she should have brought for it, or that an afterschool activity had been cancelled.  This happens very rarely, but even the few times felt tough for me.  Probably not for Janey, but when you have a child with special needs, you especially want them to be wearing silly clothes if that is what the day features, or to have a treat to give out if everyone else does, or so on.  Sometimes, a child's special needs creates special needs for the parents, specifically, a special need for communication.  Janey's teachers have used email more over the last few years, and I love that.  It can be read when there is time on both sides, it's there to refer to again if you need to---it's great!

One of my biggest dreams for Janey---that one day she'll actually, directly, tell me something about her day.  She'll say "We had music today" or "I played with my friend at recess".  I would love that so much.  Until then, I'll live for the little scraps she is starting to throw my way!