Every Morning is a Triumph

I just got Janey on the bus, at 6:15 am.  As I walked in the house, I was beating myself up a bit.  Her hair wasn't as I'd like it, she had sneaked some onion and garlic chips and her breath betrayed that, she had on two different gloves, her hastily picked clothes were not the greatest look for her...it was not my finest early morning parenting day.  But then I defiantly told myself---NO.  Getting her on that bus at that hour was a triumph.  It was the kind of triumph all you parents of other kids like Janey have every day.

It was a triumph Janey got a full night's sleep, and woke up without protest.  Sleep is not something any of us take for granted.

It was a triumph that I got Janey dressed.  I felt guilty thinking how I should be insisting on her dressing herself more in the mornings.  But doing so would necessitate getting up about an hour earlier.  We are on a very tight schedule every morning, and I'll take her cooperation over her independence when it comes to quick dressing any day.

It was a triumph I did her hair at all.  I know there are a few tangles.  I hate that.  But as I worked to brush them out, Janey screamed and had the look in her eyes that let me know that if I kept going, there was no way on earth we'd be getting on that bus.  So I resolved to brush them out before bed tonight, and I did my unskillful braid hairdo, and we called it good enough.

It was a triumph I brushed Janey's teeth well---twice.  She allows a thorough brushing without complaining.  The second thorough brushing came after she found the chips while I rushed to get dressed myself.  I think she might still have a little onion and garlic breath, but so be it. I am glad Janey eats breakfast at school, but a little chip appetizer isn't a huge deal.

It was a triumph that Janey left the house with a coat, a hat, a scarf and gloves.  The gloves were two totally different gloves, both right hand ones.  They are approximately the 30th pair of gloves she's had this winter.  She doesn't keep track of things like gloves or scarves.  If I were to buy her a matching set every time an old set disappeared, our entire budget would be spent on gloves and scarves.  So finding two to put on is a win, a triumph.

It was a triumph we were on the sidewalk two minutes before the bus arrived, and Janey was happy.  I had to grab my phone at the last minute so I could put on the SpongeBob songs she currently needs while waiting.  If the connection had been down or if I hadn't been able to immediately locate my phone, we would have had a problem, to say the least.

It was a triumph she got on the bus on her own, and sat in a different seat than usual, as I saw the aide tell her to.  She is like Sheldon on "The Big Bang Theory"---she doesn't care for being made to sit in the wrong place.  But she did, without protest.

It is a triumph that she is off to school.

I think those who teach kids with autism understand the triumphs that every successful morning include.  To anyone else out there who might not, when you see Janey, hair not looking perfect, gloves unmatched, hint of chips on her face, when you see that, keep in mind the triumphs it took to get through the morning.  To the other parents like myself---here's a coffee toast to you. May you have many, many small triumphs today.

Forgot to Knock on Wood

I wrote a fairly cheery and optimistic year end post last night, about the success we've been having lately with working to keep Janey happy by doing things she asks for before she has a chance to melt down.  I forgot, however, to knock on wood in reality and in writing after finishing the post, and of course, Fate noticed that.

Today was horrible.  It was not a good start to the year.  Janey spent most of the day screaming.  When she wasn't screaming, she was manicly laughing, or flinging herself around frantically.

What went wrong?  Part of it might be have been that no matter how much we might want to, sometimes we can't do what Janey wants, and she wanted a lot of car rides.  Tony was tired, from her being up early and him being up late for New Years Eve.  He was a trooper and took her for a few rides, but she wanted more.  She also wanted walks, TV shows she wasn't able to name and who know what else.  We tried hard, but as soon as we'd calm her down a little, she'd lash back out.  She bit me and bit William in the course of the day---neither of us hard, but any biting at all is not something we really like.

We think part of what was bothering her was losing three baby teeth in the course of a few days.  Janey's teeth are odd.  She didn't get any teeth at all until she was well past her first birthday, and the baby teeth have been quite slow to fall out.  The dentist told us that she was at age 10 at about the dental level of a six year old.  Now her baby teeth seem to have decided to fall out all at once, leaving her mouth I'm sure feeling odd.  She has some adult teeth slowly poking through where the baby teeth fell out, and they are hurting her.  She said to Tony in the car "My teeth are rolling out!" which was an impressive sentence.  We are trying to explain to her that it's a normal thing to have happen, but I doubt she really gets it.

She might also have PMS, as she has recently entered the stage of life where that happens.  The first few months of that fun stuff weren't bad, but I know that PMS can be a very, very strong force for kids like Janey, and another thing there is next to no way to explain to her.

She tried today.  She really did.  At one point she wanted to walk to the store, but asked me in the middle of a huge fit.  I was worn out enough that I didn't take care not to ask questions as I usually do.  I asked "Do we have to be calmed down to go to the store?" and Janey quickly answered "Yes!"  I asked "Are you calmed down right now?" and she honestly said "No"  I said "Can you try to calm down?" and wonder of wonders, direct answer number three in a row, she said "Yes"  I told her to take some deep breaths, and she did, and calmed down enough that we did take the short walk to the store, where she was very good.  That lasted until about a second after we got home, when she started screaming again.

I will be glad when vacation is over.  I'm sure the lack of routine is yet another reason Janey isn't doing well.  I have to hope today is not a harbinger of the rest of the year, and I don't think it is.  But I won't forget to knock on wood next time.

A positive dental surgery story!

Janey had dental surgery on Thursday. You don't hear a lot of positive dental surgery stories, I don't think, but I've got one to tell!

The background---Janey has gotten dental care at school over the years, a service for kids without dental insurance, like ourselves!  Gradually, though, it became harder for her to be treated at school, because, well, she's autistic and she didn't cooperate.  When we went to Boston Medical Center's autism center, they recommended Franciscan Children's Hospital for dental care for her.  We are lucky in Boston to have a few children's hospitals.  The big one, Boston Children's Hospital, is certainly the place to go for a severe medical emergency, but it has some issues, and is not a terribly autism-friendly place.  Franciscans caters especially to children with special needs.  It's not a flashy place---it looks as I would bet a lot of hospitals looked in the 40s or 50s, but we decided to give it a try.  They saw Janey for a dental consult, and we were very happy with them for that.  It took 5 people to get Janey in a papoose hold so they could look well at her teeth, and they did it in such a kind and caring way, both to Janey and to us.  They found she had two cavities and also a broken tooth.  We have no idea how her tooth got broken, but guess that it might have been when she was having a tantrum and biting things. It was a molar and broken in the back, and we never saw it.  She never seemed in pain from it, and indeed you could press right on it and it didn't seem to bother her, but it needed to be fixed.  She also needed good x-rays, which weren't going to happen when she was awake, so they decided she needed dental surgery.

It took a few months to get all the approvals and doctor's visits and so to arrange the surgery.  We had to pre-pay for the dental part of it, which was a financial hit, but actually so far not as much of one as we had feared.  Still, a chunk of change, but it had to be done.  Our regular health insurance will cover the surgery part, minus of course our 15% co-pay (and let me say here, if anyone thinks federal employees have some great kind of health insurance, think again.  They don't)  But that aside, everything got in place and we got a date for the surgery.

Tony and I were both nervous out of our minds about the surgery.  Mainly, we were worried about not being able to feed Janey after midnight, and about how she would react to all of it.  We could picture a nightmare.  We didn't get one.

We fed Janey all we could before the midnight deadline, and kept her up as much as we could so she would sleep from midnight on without wanting food or water.  We locked up all food in the house, as she tends to get up and forage.  The first nice thing the hospital did was give us an early surgery.  We had to be there at 6:30 am for a 7:30 surgery.  Janey slept well, we woke her and drove her there, and she only ever asked for food a few times---chips, as she associates going to the doctor with chips.

As soon as we got to the hospital, we were greeted at the front desk, checked in quickly, and the front desk guy himself walked us to where the surgery waiting room was. It was a nice big open room, and Janey loved running around.  The picture is of her in the waiting room, all smiles.  We were called in quickly.  The prep for the surgery was handled SO well.  Everyone was kind and patient with Janey.  They offered us a choice as to whether to give her a sedative before the surgery, to relax her, and we decided to.  It was a drink in a cup, which Janey didn't want to drink, so Tony asked if he could give it to her by syringe, as we do with her medication.  They said sure, and she took it with ease that way.  They let us walk into the surgery room with her.  The only moment she got upset was when they put a mask on her, and as Tony and I reflected, you almost want your kid to resist being made unconscious!  She screamed out "Daddy!" and Tony comforted her, and they held the mask on her as she struggled a bit, and then she was asleep.  They waited until then to put in an IV (after we had left the room!)

The surgery took about 90 minutes.  When it was over, the dentist/surgeon came and showed us all the x-rays, and said they hadn't found any extra problems, and that her teeth overall looked very good and clean, which made us very happy.  We've tried extra hard over the years to be good with brushing her teeth, and she actually does like her teeth brushed, unlike a lot of kids with autism.  She does have what they call "delayed dentation".  She is just starting to get her 6 year molars.  I don't know if that has anything to do with her autism, or if it's just a genetic thing.  When I was in college, a dentist told me I was just starting to get my 12 year molars, so that might be just something she got from me!

Janey woke up quite well from the anesthesia.  She was sleepy, but we got her up, and there was a true minimum of crying, less than on a typical day! The nurse with us was so sweet.  Everyone there seemed focused on making sure Janey felt comfortable.  For example, when she struggled with the automatic blood pressure machine, they got out a non-automatic one, let her play with it a bit, and then used that instead to make it quicker.  The nurse walked with us to our car when Janey was ready to leave.

Janey was a bit sleepy all day after the surgery, but nothing extreme at all.  They had given her long acting pain medication during the surgery, and we gave her Tylenol a few times, and we didn't see any signs of pain at all from her.  By the next day, it was like the whole thing hadn't happened.

I tell this long story in order to give credit to the hospital, and to all the little things they did that made this work---sedation before the mash, IV after the mask, long term pain medication, calm personal nursing and doctor care, a nice waiting room, understanding of Janey's fears, quickly allowing us to make changes like the syringe when necessary---I felt the day was a great example of autism-friendly medical care.

Franciscans doesn't have a flashy look or reputation, but it shows what we've seen quite a few times with Janey.  Sometimes, it's better to go with a hospital (or a school, or a store, or a therapist) that is used to dealing with children who are in need of understanding and caring just as much as they are in need of the latest shiny equipment.

Two hours of morning

I wake at 6 am, or rather Janey wakes me up.  That's nice and late compared to her standard waking time, and I am full of energy.  I'm determined this day is going to be different than the rest of the vacation days.  This day, I'm going to get a lot done---lots of dishes, laundry, and also lots of creative and educational activities with Janey.  I look at my yesterday self with scorn---why do I get so lazy?

Now it's two hours later.  Janey is watching PBS, for the moment, and I'm sitting here with my 3rd coffee trying hard to summon up the energy to do anything.  As is often the case when I am overwhelmed like this, I turn to here, to this blog.  Thank you, my dear readers, for listening!

What wore me out?  Well, lots of things.  A lot of it is just doing the standard morning things with Janey----getting her dressed, fed, her hair and teeth brushed.  None of it is easy.  She doesn't cooperate with the dressing---passively---she walks away in the middle or acts like she doesn't have any idea how to put legs in pant legs.  She demands foods we don't have for breakfast, and settles for a half loaf of stale French bread, which she crumbles into thousands of pieces while eating it.  She is eager to have her teeth brushed, one of her favorite things, but I somehow do it wrong, and she starts slapping me repeatedly, resulting in the useless time out on the couch.  And hair brushing is always hell, as she screams like I am trying to kill her, but when I stop, she demands more brushing.

A few random times other than those, Janey is angry at me.  She does her new behavior---suddenly and out of the blue attacking me, hitting me and looking furious.  I hold her at arm's length, and she moves in with her head to headbutt my cheeks.  It's truly a bit scary.

Finally, a little break.  There is no cream for coffee, and William wants cream, so he offers to watch Janey while I walk to the convenience store.  I tell you, that walk feels like a huge treat.  I don't realize some days how isolated I get with Janey.  Just being in a brightly lit store full of assorted foods feels strangely thrilling.  I get the cream and some cat food, and wish the line was longer, as I listen with interest to the cashiers talking about how they don't get paid enough to train new employees.  The conversations seems fascinating to me---an exotic piece of the world outside our House of Autism.

And now it's just past eight, and I'm about done for the day.  Any energy I had is spent.  I have 9 hours to go until Tony is home, so of course I'm going to have to keep going, but it's not the energetic, creative keep on going I wanted to have.  It's the get-through-the-day-with-all-of-us-alive type energy.  Once again.