Mining for Positives

After I wrote that title, I pictured Minecraft, a game Freddy used to be into, and how you can mine and find gems.  I pictured a gem called Positive, a sparkly and bright one, that is very hard to find, so you have to look hard for it, but it's also very useful to find.  That is how it's been looking for positives with Janey the past few days.

We were so hopeful a few weeks ago.  Janey was off all medication, and we really saw no change from when she was on it.  She was smiling a lot, and recovering slowly from her surgery and hospitalization.  But starting about a week ago, things went quite strongly downhill.  

The screaming has been the toughest thing.  Janey has always screamed off and on, but lately, it's a different kind of setup.  Things will seem calm for a few minutes, then she will ask for something she wants.  If I can't give it to her that very instant, she screams---a loud, piercing, hysterical scream.  Then she bites her arm, badly.  Then, sometimes, she tries to hit me, or anyone else who is around.  

In looking for positives, I must say these episodes are pretty quick.  They are super intense, but fast.  They start too quickly for me to start giving positive reinforcement for not getting upset---sometimes she starts screaming as soon as she asks the question, if she knows the answer is no.  And if the fits go on very long, it's been working lately to say "Can you try to calm down?" and just waiting.  She does try, and she does calm down.  For a few minutes.  Until the next fit.

The screaming has essentially trapped us in the house.  We can't take Janey anyplace at all.  Tonight, Tony tried taking her to the grocery store, someplace he's taken her for many years.  It was always a positive routine for the two of them.  However, after they had picked out just a few items, Janey did her extreme screaming and arm biting.  They had to leave.  If you are thinking "Oh, lots of kids have tantrums in stores.  You just have to wait them out!" then you have never seen Janey's screams.  They are the screams of nightmares, and the arm biting is an added touch of horror.  Every single eye in anyplace we are turns to us, and if we stay, it will only happen again a few minutes later.  

Yesterday was one of the longest days I've ever had.  Tony and both boys were at work.  Janey was not happy.  I would say she had a screaming episode about every 10 minutes, all day long.  I tried everything.  I tried reading to her, coloring with her, singing to her, giving her a shower, playing toys with her, sitting with her watching TV, cuddling her, listening to music with her---nothing pleased her.  She wanted to "Go to Maryellen's house!"  She loves Maryellen, but if we actually go there, she is happy for about 5 minutes.  And then, when we leave, on the way home, she again says "Go to Maryellen's house!"  It's just something to ask for.  It's not really what she wants.

Janey hasn't been to school for a long time, since late May.  That's probably one of her longest stretches in years without school.  Summer school starts Monday.  I am hopeful it will help, but not confident, really.

We started the medication again today.  We didn't want to, but the intensity of Janey's unhappiness told us that what we wanted wasn't really the issue here.

It is getting harder and harder lately.  I have to admit it.  I sometimes truly feel scared, and I know I feel depressed.  I do see a therapist, but I haven't been able to go since Janey got sick---there is no-one to watch her.  However, although I certainly like having someone to talk to, it isn't going to change the situation any.  I am more and more aware there is not any help but school.  It doesn't exist, not for kids like Janey.  

I will mine for positive at the end here.  I cut Janey's hair out of desperation the other day, because after the long hospital stay it was quite tangled and she wasn't happy with brushing.  I think it came out not badly for a completely non-professional haircut.  Now a quick brush is all she needs.  It's little tiny things like that that are all we can really do to make our lives easier.  So here's a picture of Janey's new 'do!

Don't read this if you have a newly diagnosed child or if you don't like negative posts!

As the title says, if you are new to the world of autism, or if you are triggered by anything but positive words about living with someone with autism, please don't read this.  I have been thinking lately about political correctness in writing about autism.  There are things that aren't supposed to be said.  It's not that anyone says I CAN'T say them---it's more I self-edit what I write, but I do this to avoid upsetting people.  I don't want to discourage those with a newly diagnosed child.  Janey's course is not typical.  Most children with autism will make a lot more progress than her.  And I don't want to hurt the feelings of those people WITH autism who read this blog, because the ones that have introduced themselves to me are wonderful people, people I care about.  But after a tiring day like today...well, I kept thinking of a few things I want to say about life with autism, my particular life with autism.

1.  There are days your child is going to drive you crazy, make you cry, make you despair.  There are days that all the positive thinking in the world can't cheer you up.  Some days, you can be the autism super-parent.  Other days, you just can't, and you are going to just get through the day, however you can.

2.  Your child might never be fully toilet-trained, despite all the books and articles and advice and school interventions and timers and special underwear and everything you try.  Your child might be 10 and still in pull-ups.  They might actually pass from pull-ups to Depends type underwear.  I'm talking about you, Janey.  They might just never get it completely at all.  

3.  Your child might sometimes be aggressive toward you.  They might hit you, bite you, scratch you, bend your fingers, really, really hurt you sometimes.  There are many reasons for this, and I do understand the reasons, but when you are at the receiving end of a huge bite, you aren't thinking reason.  You are thinking pain.

4.  It's very easy to get your child evaluated.  It's quite easy to get involved in medical studies.  What is not easy to get is respite or help.  I could have Janey tested every day of the week, pretty much, and between the two insurances she now has, it would be covered.  But no insurance or financial help covers even one second of respite.  I could get people to come in the house, while I'm here, and help with Janey, mostly likely from what I've heard, but I'll say right here---that isn't respite.  That is not what I need help with.  That is like having company, company I need to talk to and entertain and clean up for.  That is more stress, not more help.  

5.  Your life gets very, very restricted.  I talked to a fellow autism mother about this, about how her non-autistic daughter might get a chance to be in a once in a lifetime performance, and all she can think about is "Who would watch my daughter (the autistic one) so I could actually go see her?"  I am thinking that currently about my son Freddy's high school graduation.  One night, maybe 3 hours.  And even that is going to be hard for both Tony and I to go to.  

6.  You will get in touch with the less kind parts of your own personality.  I feel resentment, sometimes, toward people with non-autistic kids.  I feel angry if I don't feel like they appreciate what they have.  I don't feel this all the time, but when I do, the depth of my feelings surprises me.  I don't want to be that person, but that person shows up, unbidden.  

Now, I could go on and on.  But I won't.  All the parts of life with Janey are not nearly this bleak.  I adore the girl, I can say that without a second's hesitation.  But life with her is hard.  It has wonderful moments, I have met so many of you wonderful fellow autism parents out there, I have met far more than my fair share of fantastic teachers and therapists, I have delighted in Janey's uniqueness.  But just saying those things is not speaking the whole truth.  I think about the emails I sometimes get from parents who are very, very discouraged, and I think part of that is the hesitation we all have to speak the other part of the truth.  It's a tough road we travel.  Although I have a near-compelling urge to not end on a negative note, I will, just this once.  It's a very tough road.