Having To Crack Down on Compliance and Bolting

Over the summer, Alex has been having increasing trouble with following directions without complaining and with staying with his designated adult.  I suspect the problem is the disrupted schedule (and possibly with the camps he attended, where they may not have required him to be hand-in-hand with someone).

But it means that I have no room to wiggle when it comes to expectations.  He's been quite upset at not earning his screentime for the last few days since he's been verbally protesting and whining.  And he's been trying to snap my fingers off when holding my hand.

A lot of his difficulties probably stem from the upcoming transition.  It's big and scary and very overwhelming for him.  But it's making the final weeks of summer pretty unpleasant for the rest of us.

The Sound of Enforced Silence

I love music.  I like having it in the background 24-7, I have an extensive Itunes collection of over 4000 songs and usually add 3-6 each month.

In the last year, Alex has begun throwing tantrums and headbanging whenever my music is playing.  (He's fine with his father's music, but not mine.)  I've tried creating playlists of songs that I know Alex likes (since he sings them constantly).  I've tried playing it quietly so that he doesn't have to hear.  I've even tried only using headphones.  None of it seems to matter.  He will come running from a different floor to demand that I turn off the music and if I refuse, he begins to bang his head, scream, and attack his brother.

Music has always been a coping strategy for me.  If I'm feeling depressed or anxious, I can use it as an escape to prevent myself from brooding too much.  It keeps my energy levels up and lets me do all the things I need to during the day.

And now it's being taken away from me.

I've tried continuing as much as I can, but the cost is higher than I can pay.  I can't relax anymore unless Alex is out of the house.  I'm waiting for the tantrum or I'm gritting my teeth and trying to ride it out.  Either way, the music doesn't work for me any longer.

Of all the accommodations I've had to make for Alex, this is the only one I find that I truly resent.  There's a lot of other unpleasant things I have to do, but I do them because they're necessary.  This feels like the universe deliberately removing one of the few sources of joy left in my life and leaving nothing in return.

I'm not sure why Alex picks on my music so much.  His father or other people can be playing the exact same songs and not have an issue, so he's decided it's a problem with me.  It's not something that I can give up but fighting constantly is wearing me out.

Expectations and Results at Little Ray's Reptiles

Today I was hoping to be able to post about our wonderful trip to Little Ray's Reptiles.

Instead Alex had a massive temper tantrum and I got to wait outside while Nathan and our aide completed the tour.  A disappointment and embarrassment to say the least.

On the other hand, I've learned that the facility is very special-needs friendly.  Clients with special needs only pay $ 5 for the entry fee and are entitled to a free caregiver.  And they appear to hire special needs staff.  

The staff were great with dealing with Alex's tantrum.  They asked me what they could do and showed me where I could have some privacy to deal with him.  I left after a bit because Alex was being loud, violent and trying to escape, which I thought was just too much to inflict on other clients.

Getting Organized for School

It really is the most wonderful time of the year, when we can start looking forward to quiet time and a regular schedule again.

It's also stressful, wondering what the challenges for next year are going to be.  With Alex heading to a new school (regardless of the which school he's actually going to be going to issues), there are a huge number of unknowns: what time will he leave and come home?  How will his new class handle it if he's getting upset?  Will they be able to encourage and continue the progress he'd made at South March?  Will the new school be closed at the end of next year (it's on the short list)?  That's just the ones off the top of my head.

For Nathan, how will he adapt to his new teacher?  Will he be overwhelmed by the changes on the first day or will he be able to cope?  There's a significant switch in independence level and maturity for Grade 4, will Nathan be left behind by his peers?

Starting next week, hopefully we can start having some answers.  The staff are to be returning to school and the school board on Monday.  We've been patient long enough and now the real work is about to begin.

Burn Out and Balancing

One of the first things I tell parents who have a child who's been newly diagnosed with autism is to take their time.  Dealing with autism is a marathon that never ends.  If you don't pace yourself, then you'll burn yourself out and all the challenges will still be there, getting worse while you have no energy to cope.

It's a tricky balancing act for every family.  Do I challenge the administration at my local school or shop around to try and find friendlier classrooms?  Do I pay for an intensive therapy program or take time from my job to do the day to day work?  Do I push for more socialization and playdates or do I focus on improving academics?  Which lifeskills are most critical and which ones can be learned later?  The list goes on and on and, as a parent, there's always the nagging guilt that you've chosen the wrong ones.

It feels wrong to take time for yourself when your child needs so much, when you know that withdrawing some effort can have a huge effect on their long term prospects.  And yet, at the same time, if you drain yourself too much, you can find yourself with no choice in the matter.  Eventually your body will insist on rest, even if it has to knock you into the hospital with a massive infection to get it.

So I tell parents to take their time and figure out what is sustainable for them in terms of time, money and effort.  These are decisions they will have to live with for a very long time and being honest up front about what's possible will make life much easier in the long run.  If your spouse is in denial, don't expect them to take an active role in therapy or research.  If your extended family isn't good at dealing with the child, don't expect them to be able to give you respite.  If having a trip to Florida every year is an important part of what keeps you sane, then make sure that trip stays in the budget.

It's not selfish to take care of yourself.  As a parent, you are the only thing standing between your child and the world.  They need you in top shape so that you can continue to be their advocate and protector.

Test Results for Nathan

Last week, we had a suspicion that maybe Nathan couldn't smell.  Since I have no sense of smell, it seemed prudent to check it out.

We devised a test.  One of us would blindfold Nathan while the other held spoons with mustard or ketchup under his nose.  He had to tell us which was which.

First round: Nathan is doing great, getting 100% and peeking from under the blindfold.

Second round: Dave holds down the edges of the blindfold so that Nathan can't see.  Nathan starts giving us nonsense answers: Ceili, elephants, garbage, etc.

Intermission: explain to Nathan that this is important to us and could have a big impact on his medical life.  Also, there will be no screen time until we're satisfied the test has been done correctly.

Third round: Blindfold tamped down.  Nathan gets the first two wrong but then the next six right.

Not entirely conclusive, but I'd say it proves he can smell, at least weakly.  Pending further evidence, we'll assume that all of his senses are functional and thus cannot be used as an excuse.

Free IEP Workshop for Parents

Navigating the school system can be a real challenge when your child has autism.  An IEP, the Individual Education Plan, is the tool parents need to make sure the proper supports are set up for their child.  (The IEP is a detailed guideline of any accommodations, curriculum adjustments and extra expectations/tools and is done each year for the school.)

Coordinated Access is doing a free full day workshop on Tuesday, September 27th from 9 to 4 at the RA Centre on 2451 Riverside Drive in Ottawa.

Participants must register by September 19th and do so by emailing cathy@coordinatedaccess.ca.  

Dr. Joyce Mounsteven will be doing the workshop: Developing An Effective IEP for students with an Autism Spectrum Disorder.  She recommends bringing your child's IEP as a reference but cautions she will not be providing individual consultations.

Another Toileting Breakthrough

Alex had his first spontaneous BM in the toilet outside of the house.  His counselor noticed that he was leaving the room at camp and followed him to the bathroom.  He then went to the toilet and produced, entirely unprompted.

This is a great sign, since it means he's paying attention to what his body is doing.  (There was still a small accident which is less than ideal but this is a transition phase.)

It's very nice to be able to report that after Monday's disaster.  And I got another good bit of news.  The counselor told me that when the other child was pulling Alex's hair on Monday, Alex reacted appropriately.  He walked away the first time, yelled the second time and then stayed by the counselor so that it couldn't happen again.  So even though he decided to take it out on us after, in the moment, he was appropriate.  Another good step.

A Second Generation Anosmic?

Today, Nathan said something which surprised us.  He said he couldn't tell the difference between a bed where there had been an accident and one where there was lots of sweat.

Now, Nathan's concept of "truth" is a little more fluid than we're comfortable with right now.  He's figured out that people will cut you slack about any number of things in the right circumstances but without the accompanying skill of guessing what would be a plausible circumstance.  But there's a chance that he's telling the truth about this one.

I'm anosmic, which means I can't smell.  I've been that way as long as I can remember and there's a possibility that it is a genetic issue or that it's the result of powerful antibiotics I was given at 6 months old.  Since I don't really have a firm grasp on my 0-6 month memories, could be either way.

If Nathan also has no sense of smell, then it would strongly suggest that I never had one either.

We're going to have to do some testing tonight and see if we can get some answers.

A Little Slice of NOT-Heaven

Yesterday did not go well.  For those interested in an update, the garage door needs to be replaced.  So not a simple fix.  The only advantage: it's not winter so our cars haven't been trapped inside.

And as a final splinter of rotting ice, pick up turned into a war zone.  First, Dave called to say he wasn't going to be able to pick up one of the boys, so I had to do both, always a dicey proposition at the best of times.  Then I discovered that Nathan had hit one of the other campers and lied about it to the counselor.  So we had to have a talk about that, one made very unproductive by his insistence on screaming at me because I "lied" to him about Daddy picking him up.

Then we went to get Alex, who was upset that we were late.  And that Nathan was with me.  And as we arrived, we saw another child shove him.

Prudence suggested separation, so I put one boy in front and one in the back seat of the car.  Unfortunately, Alex decided to throw a massive tantrum, and when that wasn't getting the reaction he wanted, he started pummeling Nathan and I.  (Note: the drive home is only 10 minutes and I spent 8 of them blocking blows.)

Home.  Nathan is refusing to leave the car and I'm trying to get him out and into the house so that I can get Alex out and into time out.  Alex is continuing to lash out physically, screaming at the top of his lungs.  Finally I got Alex pinned down so he couldn't keep hitting Nathan and ordered Nathan to leave the car and go inside.  

Got Alex inside in time out.  Nathan is screaming and crying.  Alex is smashing his head into the wall hard enough that I have a half-dozen new holes in it.  And I am feeling like launching my own temper tantrum if there is the slightest chance it will frighten them both into being quiet and behaving.  (I didn't but it was tempting.)

Loss of screen time all around for the rest of the day.  A long talk with Nathan about the parallels between Alex hitting him and him hitting the other camper.  A constant refrain of demands for screentime from Alex, followed by more tantrums.  (Luckily, without hitting.)

Not a good day.  I can only hope that today goes better.

Really? This Had To Happen Now?

It's a late posting today, and I apologize.

I knew this morning would be busy.  We had to get both kids off to camp, both parents to work and have the house ready for the cleaners.

So, of course, today the garage door decides it would be fun to stop working.  

We didn't have much time for an inspection, but we're hoping it will be a simple fix once we have time to look at it once we're all home.

But I want to give a shout out to Dave who offered to stay home until the cleaners arrived (they were supposed to come in the garage while we were gone).  Thanks for stepping up and helping out.

Nathan Quote: Happy Thursday

Yesterday was Chris Hemsworth's birthday and his fellow Avenger's co-star, Chris Evans, sent out a gif on Twitter of Hemsworth fumbling a hammer catch during shooting.

I showed this to Mr. Nathan and explained that about the birthday.

Nathan: I hope he had a happy Thor's Day.

A geek related pun.  Mama is proud.  :)

Water Heater Challenges and the Divide of Labour

Over the last several months, our water heater has been going on intermittent strike.  A few years ago (the first time it happened) we called the service provider, the repairman showed us how to reset it and suggested we just do so when we had problems rather than calling.  As long as it was something which happened every few months, that was a good solution.

Lately, it's been shutting down every couple of days.  Which put me in a bit of a dilemma.

Dave and I usually set down who will be responsible for what around the house.  When a problem crops up, we decide which of us will deal with it.  (This usually ends up being me, due to Dave's discomfort with unfamiliar situations and social interactions.)  In this case, Dave agreed to contact the service provider to see about replacing the water heater or about how much it would cost to "buy out" our rental contract and replace it with one of those instant hot water units.

If I had been dealing with it, the calls would have been made 3 months ago.  However, I've learned it's too easy for me to take on the extra responsibility and then I start feeling resentful about being the only one doing the work.  So even though I'm not happy about how things are progressing, I keep my hands off.  I've since learned that this is a common complaint among spouses who have an Asperger's partner.  Since the partner is unlikely to pick up on the little social complaints, they may not realize that a situation is becoming critical.  Even direct communication may not be helpful as it is too easy to rationalize away someone else's feelings.

All that said, the call has finally been made and we should be receiving our new heater within the next few days.

Better The Second Time

Alex's second day at camp went much better than his first.  He had the help of an EA who has worked with him before and they moved him to a group of older children, who are a little quieter and more mature.  No reports of head-banging or aggression, which is reassuring.

Nathan and I went out and got his school supplies for next year.  90 minutes of shopping at 3 different stores, but Nathan handled it very well.  We went to Payless instead of Walmart to get his shoes for next year and discovered he'd been wearing a size too large, which may explain why his shoes last year wore out so oddly, scraping up the toes.

We did go to Walmart to pick up his new backpack.  Initially he found one he liked but then we discovered it didn't have the mesh holder for his water-bottle.  I thought we might be in for a tantrum but Nathan put it back and picked out another one.  

Then it was on to Staples for the actual supplies.  (I prefer Staples to Walmart as I find the supplies at Walmart tend to be cheaper and more easily broken.)  Nathan is in grade 4 this year, which means a new and more detailed supply list.  On the plus side, he keeps all of his supplies in his desk rather than having them put in common for the class, so if he wants to have something nicer than the bare minimum, it won't disappear in the first few weeks of school.

A good day, if a long one.  It's nice to see things going smoothly for once.

Back to the Grind

It's actually been something of a rough two week break.  The kids had a fantastic time taking turns with their grandparents at the cottage, but there is definite tension in the air.

Alex is having trouble with his self-injuries, his aggression and his toileting, which makes for a difficult household right now.  He had his first day at Mainstreet Camp yesterday and while they reported it as a good day, they also let me know that he had over a dozen headbangs and several incidents of aggression.  To me, that's not such a good day even if the rest of the time, he was okay.

Hopefully this is mainly a transition issue.  I did have concerns after our site visit during the holiday.  It seemed very loud and chaotic with a lot of low functioning kids.  Alex may be very low functioning socially, but I'm wondering if this was a good choice.  Of course, this was recommended as a camp for him from someone who knows where he is, so maybe this is an unusual circumstance for them.  Or maybe it's just one of those Alex-realities where although he is more advanced than the other kids, his particular limitations mean that this level is the only option.

Nathan is showing high levels of anxiety.  He's convinced his room is haunted.  (I believe in ghosts so I won't tell him that ghosts aren't real though I have explained that our house is not a likely ghost target.)  Most of the time we wind through the ghost-fear to discover another issue at the root: he's running out of space for his toys, he wants to turn off his alarm early, etc.  He won't go upstairs on his own, even in broad daylight, which is inconvenient since he also wants to trade out toys from his room every ten or twenty minutes.

Hopefully we can get through the next few weeks and get back on track.