Difficult Day and Medication Considerations

Yesterday was a very difficult day.  Alex is in one of his destructive moods and he got more and more frustrated and aggressive as the day went on.

We started the day with him shredding his used overnight diaper.  Over an hour to clean up.  Then he began to go after toys.  He broke two of the cars from Nathan's new train set (twenty-five minute tantrum in stereo), several of his own new Christmas toys, shredded part of a calendar (luckily one that expires tonight) and chewed through two of his supposedly "indestructible" chewsticks.

Then there was the hitting, kicking, screaming and headbanging.  Every time I told him he couldn't do something, he went after either me or Nathan.  I took away privileges, I put him in time out.  Eventually I had to put him in his room because my temper was getting seriously frayed and I didn't trust myself not to start screaming back.

By the end of the day, I was emotionally exhausted and feeling like a complete failure as a parent.  Looking back, I don't see an obvious point where I should have done things differently.  But I can't help feel like I must have missed something.

I'm inclined to blame the reduced medication but my slightly more rational side tells me not to make that judgment just yet.  Maybe he's frustrated at being cooped up at home and the disruption of routine, maybe it's backlash from the frustration of the holidays.  Maybe he's coming down with something or has a stomachache. 

Of course, all of those things could apply and the medication could still be a factor.  If he is emotionally destabilized, it will be easier to set him off into a tantrum and harder to get him back (which would certainly describe the last two weeks).  It's an anti-anxiety medication, so the renewed anxiety could be making things worse.

I still think it would be prudent to keep on the reduced medication until we get back to school for at least a week.  Give us a real chance to evaluate the effects.  I wasn't expecting a response this soon and so I wonder if I'm blaming the meds for something else.

Today I get to deal with it all again, plus try and get the house ready for a New Year's party.  I've already accepted things aren't going to be great, since Alex will require constant supervision throughout the day.  I'm hoping I can at least get the soiled bedding washed (he likes to fiddle with the washer and will halt the bloody thing in midcycle) and get the toys picked up off the floor and put in their bins.  Small goals but I think anything bigger is only going to stress me out more.

Being able to get my nails done would be nice ... a girl should have some dreams.

Autism and Sex Education

I've been doing some thinking lately about sex education and specifically, how to do it within my family and for my nine year old in particular.

I don't want to debate on whether or not he should be educated.  He has the right to know what to expect from his body in the next couple years so that he's not frightened or ashamed.  He will eventually have sexual desires and needs to know how to make good choices on how to deal with them.  And he needs to know what is okay and not okay in a relationship.

That is a huge amount of information to convey and I'm finding the various autism online sites to be relatively unhelpful.  Most of them suggest just waiting until your child has questions and then be open to answer them in a direct and age appropriate manner.  Great advice.  Except if your child is non-verbal or has communication challenges.

My oldest is not likely to ask.  He has solely functional language capabilities at this point.  He can ask for a glass of milk but isn't likely to ask me what's going on if he feels funny in his pants.

I'm really worried about him being scared or confused by his body's reaction.  I may not have ever been a teenage boy but my husband assures me that the jokes about spontaneous erections during adolescence do not exaggerate the situation.  I want my son to understand that this is a normal part of growing up and that he shouldn't be mocked or feel ashamed about it.  I want him to understand the socially appropriate methods for handling it.  But I don't want him to feel that he is dirty or depraved or a sex maniac.

It's an incredibly fine line to try and follow with any child.  For one with communication difficulties and trouble with social cues, it's almost microscopic. 

Then we come to the emotional vs physical age challenge.  Emotionally, he's closer to a four or five year old.  So I have to explain puberty but do so in a way which is developmentally appropriate for a much younger child.  (Surprisingly, very little on the Internet on this although I'm a little worried about punching in search terms which will get me on an FBI or RCMP watchlist.)

I'm working on muddling through.  So far, I've found two very good bits of advice to pass on to boys:

1) Physical response doesn't always match emotional response.  He can be uncomfortable with something but still find himself reacting to it.  That doesn't mean what happened is "okay" or that he enjoyed it.  (This is one of the common tools predators use to lure in children and teens: you responded so you must have enjoyed it.)

2) A boy's first time with a sex partner should not be marred with drugs or alcohol on the part of either party, ever.  (This one is a great rule of thumb to help avoid date rape issues.)

I'll keep looking for tips and hopefully I can make myself understood.  I'll have to do it very gradually and make sure he has a solid foundation before I build on it.

Christmas Report Card: C+

This was not the smoothest of Christmases for us.  Boxing Day was particularly difficult with both boys starting the day badly (Alex came out of his bedroom kicking his feet and Nathan came out tantruming). 

We have a couple of theories.  One, they simply didn't sleep well Christmas Eve or Christmas Night for the usual sugar and excitement induced reasons.  Two, Alex's reduced medication may be showing itself.  Three, Nathan attending a late night Christmas Eve party might have made him more tired.  Four, maybe Dave and I were more tense as parents (we've all been sick and trying to catch up).  Five, maybe it was just an overfull day on Christmas Day.

Lots of the usual suspects to point fingers at.

However, it wasn't all humbugs and hauntings.  Most of our Christmas actually went rather well.  Although we are somewhat concerned it may have affected his temper, Nathan really enjoyed going to the Christmas Eve party at my aunt's.  He was the hit of the night, showing off his dance moves and repertoire of knock-knock jokes.

There are a few things we did to help.  I knew it would be a late night, so Nathan and I both took a nap in the middle of the afternoon.  (He didn't like it but he did snooze a little.)  I went a few minutes early (with my aunt's permission) so that he had time to adjust to the house before people showed up.  He had a designated quiet area upstairs that he could go to (we didn't end up using it but knowing it was there helped).

The next day was a whirlwind.  The boys actually slept late, until 8 am.  I think we were the only house where the adults were up before the kids.  We were definitely the only house where the adults were debating waking the kids up (luckily, that didn't prove necessary). 

We read our letter from Santa Claus, opened our presents and had breakfast, in that order.  The boys liked their presents very much.  Santa's workshop made them both Despicable Me Minion stuffed toys.  We got Nathan a motorized train set and Alex a Playmobil band and tour bus. 

Dave's family showed up around 10:30 and we had more presents and lunch.  This was the first year Alex showed interest in opening presents, which made it also the first year I had to keep warning him away from opening gifts which weren't his (may also have been a factor in short tempers).

Then at 3:30, we went to my family's for dinner.  The boys were already showing signs of strained tempers.  Nathan was screaming at Alex and Alex had shoved him a few times (and lost privileges for it).  They had to be supervised much more closely than usual but still seemed to enjoy themselves.  I think we ended up rushing presents at my mother's too much for them (the turkey finished cooking early so there was a push to get it done).  If I had to do it over, I would have suggested we wait until later or even come back on Boxing Day to finish rather than pushing kids who were already showing signs of emotional exhaustion.

Boxing Day is Dave's mother's Christmas dinner.  More presents and more expectations.  It went downhill rather quickly.  I've suggested that we consider doing a Christmas dinner at lunchtime rather than evening in the future, to avoid dealing with tired and overwhelmed boys.

It's a lot of activity and overwhelming even for an adult.  But I'm hard pressed to find something to cut out or simplify.  I'll have to think hard for next year.

Merry Christmas To All and To All ... A Good Break

Merry Christmas everyone.  We'll be back after Boxing Day.

A Father Captures His Autistic Son's World

Timothy Archibald's son, Elijah, has autism and he decided to capture his son's unique point of view in a series of photographs.

Here's an example:

I think this is an amazing idea and it makes me wish I was a better photographer.

Umm, Santa, a last minute request ... ?

It wouldn't be Christmas without some disaster and we've had ours.

Our dishwasher has broken, right before we're hosting everyone for Christmas lunch. 

We came down this morning to discover a small ocean of water on our kitchen floor and an overflowing dishwasher.  (It was not a pleasant surprise to step in.)  Eight soaked dishcloths and some improvised bailing later, we finally managed to get the thing to drain, expecting to find a blockage.

No blockage.  Instead, the bit that actually sprays water into the dishwasher (you can tell I'm a highly technical person) is leaking.  A nice slow drippy leak that is apparently enough to overfill the base in 8 hours or less.

We'll have to take it apart and see if we can figure out why it's leaking.  Hopefully it's something obvious which is easy to replace.  Meanwhile, we've turned off the water to the dishwasher.

Maybe Santa has some extra room in his sleigh and credit at Sears ...

Down the Rabbit Hole

We've reduced the medication by 1 ml and thus far, we're not quite sure what we're seeing.

He's having trouble focusing, both at school and at home.  This could be residual from the loose tooth/recovery from illness.  It could be due to the distraction in change in routine.  Or it could be the result of lowering the dosage.

When we first put him on, we noticed an effect after raising the dose to 2 mls.  So I wouldn't expect to see a significant change until we dropped below that threshold.

We're holding steady for now and won't make any further changes until we have a better idea of what we're dealing with.  If he continues to have trouble after the holidays, we will have to accept that the medication is necessary and raise his dose back to the standard levels.  It would probably be mid-January before we could be sure the problem was the medication and not the environment.

Christmas Work is Done, Yay!

I have my house decorated.

I have my presents bought and wrapped.

I have my Christmas cards mailed.

I have the holiday party arrangements confirmed.

I have it on good authority that our family letter from Santa Claus is ready.

I am done!  :)

Toileting Backslide

Life is not a success-only journey.  It should be.  But it's not, for some cosmically unknown reason.

We were all very excited when my youngest made his toileting hat-trick, granting him unlimited screen time for all perpetuity.  But I knew that it was only one more step in the process.

We've now had a not-entirely-unexpected problem with backsliding.  This week has been marked more by failures than successes.  So the question now becomes: what do we do?

Up until this point, we've treated the occasional failure by pulling back on screen time privileges.  He fails to go in the toilet, he loses his screen time until he has a success, except for 20 minutes if he tries to go.  (He's also allowed the iPad in the bathroom which means he can stretch out his time if he wants.)

Now we're wondering if we should step back and make him have three successes in a row before he's allowed unlimited time again.  Just a little reminder of what the point of the whole exercise was, so to speak.

Everything can seem so stretched out for my family.  I know lots of parents who did toilet training in under a week.  Most in under a month.  We're working on a year at this point.  I tell myself it's not the amount of time that matters, it's getting to the goal.  But the truth is that the amount of time does matter: it's one of the reasons why special needs parents get so exhausted just trying to deal with ordinary challenges.

At the end of the day, the goal is what's important.  And taking long does not take away from my child's success.  It just makes it harder on his coaching staff.

Service Dog Update

I spoke with the application coordinator at National Service Dogs and she assured me that we can still apply until Alex is 10 years old.

That was a huge relief.

It's still a long process and there are no guarantees.  NSD has given out 250 dogs in the last 16 years.  Simple math tells us that only 15 or 16 families per year get a dog.  How many apply?  No idea but I'm betting it's more than 15 or 16.

I'm putting in the application.  My husband still isn't convinced but he is at least on board with applying.  He's worried about the expense and daily work of taking care of the dog.  (To be fair, I am, too.)

One other note on the website concerned me.  They pointed out that many applying families fundraise to help cover the $30 000 cost of the dog while they wait.  There was a note that fundraising did not increase your chances of getting a dog but I am not convinced of that.  That's a lot of work but we'll cross that bridge when we come to it.

I find myself getting overwhelmed if I concentrate on too many steps at once.  So for now, just concentrate on the baby steps: get the application in.

Service Dog Blues and An Upsetting Night

We've been on the fence about deciding whether or not to apply for a service dog for about a year now.  We go back and forth.  On the pro side: Alex could use the help and companionship, it would allow us to go out in public without worrying about him bolting (or at least, with having a tool to help with that particular problem), it would allow us to stop worrying that he's left his room at night.  On the not-so-pro-side: we wondered if Alex really needed the help of a dog since his bolting and listening have both been improving, could we manage a large dog and its' needs (walks, vet bills, etc.),

On the weekend, we watched Paws For Autism, a documentary about two families who got service dogs.  We saw so many aspects of our family in them: multiple locks and alarms on the doors to prevent their child from wandering, difficulty going out shopping, the lack of social connections and friendships available to their children.  It tipped us over the edge.  We decided to go ahead and apply.

Then, when I went to look at the National Service Dogs website, I saw that they provide service dogs for autistic children ages 2 to 10.  Alex is nine and a half and there is a two year wait from the time your application is approved before you get your dog.  When I looked at the application for approval, it said for ages 2 to 8 (presumably accounting for that 2 year gap).

I was deeply upset and had trouble sleeping that night.  Does this mean my back and forth dithering has prevented Alex from having a service dog?  The thought that my uncertainty may have deprived my child of a valuable tool and a possible companion stole any hope of peaceful rest.

I'm planning to call National Service Dogs and ask for clarification to see what our options are.  After a sleepless night, I have some sense of alternatives if they flat out won't or can't help us.  If we're primarily looking for a companion for Alex, then we don't necessarily need a specially trained service dog.  A good tempered dog with a healthy social interest could be trained independently as a pet for him.  A dog who could be trained to alert us and follow him if he was bolting would be great, but we've made progress on that front.

I'm wondering if I'm justifying things to myself in a sour-grapes-esque kind of way (we don't really need some smelly old awesome dog) because 24 hours ago, I was gung-ho and convinced this was the way to go.  At least I can let all my readers know: if you're considering it, get the application in because you don't want to miss this opportunity.

Got My Boy Back!

Alex has been very withdrawn and lethargic since he was sick.  His appetite was down and he just seemed worn out.  He went to bed early and had to be woken up each morning.

I was concerned but the doctors told me they couldn't see anything symptomatic.  I thought perhaps he just got hit harder than the rest of us by the bug which swept through our family.  And certainly I was having lingering exhaustion as well, so perhaps I was worrying too much.

I had noticed he had a loose tooth and I thought that must be contributing to the problem.  With Alex's oral sensitivities, loose teeth are a nightmare, often throwing him off for weeks at a time.  But usually it's more of a mild irritability.

I decided to go with the standard "mom" cure of food and rest.  Make sure he ate plenty.  Make sure he got lots of sleep.  Wait for nature to triumph over bacteria or virus.

This weekend, the loose tooth popped out and it was as if a curtain had been pulled back.  Almost immediately his appetite perked up and the sparkle returned to his eyes.  It was literally as if someone gave me my boy back.

It's hard to describe if you haven't experienced it as a parent.  Seeing your child stumble through life, worn out ... it's like seeing a zombie in your child's place.  It took less than five minutes for Alex to go from zombie to himself again, which tells me that this tooth must have been worse than usual.

It's a definite reassurance.  We have been planning to gradually reduce his medication to see how he does without it.  He's been on Prozac for a year now and it certainly helped with his ability to pay attention and focus.  It was as if it calmed an underlying anxiety and gave him the mental room to stop ducking and start paying attention to the world again.  I'm not a fan of medication and tried everything else I could think of first, but I can't deny that it worked.

I don't want to deny him something which helps him to function, but at the same time, I also don't want him left vulnerable to side effects or other problems with long-term usage.  I want to see if he has gained skills which allow him to cope or if the anxiety has lessened.  We're taking it very slowly, over a period of several months.  I'll definitely keep you all posted.

Link Between Autism and Maternal Nutrition

I was forwarded this article by Psychology Today which draws parallels between older fathers and autism.  This is something I've seen before but there was a shocking twist towards the end.  The author, Christopher Badcock, suggests that "better than average nutrition for the mother during gestation ought to correlate with the increased risk of autism because it mimics resource-demanding paternal genes such as IGF2."  IGF2 promotes fetal growth.

I won't pretend to understand how more nutrition could mimic the effect of more mature sperm but Dr. Badcock says his theory could explain why autism is generally seen more among affluent families.  It would link the rise in autism to the rise in maternal health and could even explain the timing of the discovery of the disease.  Birth weights rose after World War II, which is when both Kanner and Asperger noticed a trend of children who seemed determinedly oblivious to the world around them.

It's an interesting theory and I'm hoping no one starts to starve pregnant women so that they don't have autistic children. 

The fact that autism is more commonly diagnosed in Western society does bother me.  I've wondered if it is because these children are simply pushed aside and end up discarded or starving in more survival oriented societies.  Alex required very time-consuming efforts to create food he could eat.  If I were a mother on the verge of starvation with four or five other children to also feed, I might not have had the time or material to find a way to coax food into him.  A child who doesn't fit socially would have a hard time in a communally based society. 

I'm not quite sure what to think about the article or the theory.  I would like to see if someone is doing research to test if autism is actually more prevalent or if it is just noticed more when parents don't have to worry about basic survival.

Alex's Advent Calendar

I meant to post about this last week because I'm rather proud of myself.

I got Nathan an advent calendar this year to count down to Christmas but I was having trouble coming up with an option for Alex.  We've tried the Playmobil and Lego calendars in the past but ran into trouble with tiny bits being strewn everywhere and Alex being rather unimpressed with the whole thing.

So this year, I made him an advent calendar.  I started out with a few basic supplies:

And with two dozen pictures, some pill organizers and tape, I made this:

 

It has a few extra compartments but Alex has been pretty excited about it.  I put some of the tiny Lego bits which he likes in each compartment.  (Next year, I'll try using miniature marshmallows.)  After a day or two, I find the bits discarded and put them in the collection bin upstairs.  It took me about 90 minutes to make, 40 of which were thinking up Christmas themed ideas for the little pictures.

Awesome Boss

I'm very lucky to have a job which accepts that my family and children will always be first priority with me.  I'm even more lucky to have a job which allows me to work from home the vast majority of the time, making it easier to strike the necessary work-family balance.

But today, it went beyond that.  We had a staff meeting and had to deal with various issues.  After, I asked to speak to my boss for a few minutes about some issues which I didn't want to bring up in front of the other administrators (mainly because of confidentiality). 

After we covered business, she said she'd noticed I seemed tired and wanted to know if there was anything she could do, as my boss, to make things easier on me.

That is entirely unprecedented in my working history.  I've had supportive bosses.  I've been given options when things were difficult.  But never has someone taken it for granted that it was as much the employer's responsibility to manage the work-life balance as the employee's.

I think our society would be a great deal happier if more people made that assumption.

Facing My Reality

In August, I had a lot of plans when it came to my writing.  I thought that with both boys at school all day, I would be able to put in serious keyboard time.

Boy, was I wrong.

Despite my best efforts to keep writing time sacrosanct, there ended up being too much to do and no time in which to do it.  In three months, my personal best was writing for three afternoons out of the five.

I can pretend that this is a changeable situation or recognize it for what it is and find a new path.

I'm done with pretending. 

So I'm going to try something new: writing in the evening.  I'm a little worried about this because it took me several years to be able to go to sleep at a reasonable hour (I'm a natural night owl who gets sleepy around 3am if given the option).  I don't do well on short sleep.

I'm hoping I can slide writing into my routine instead of reading at night.  Even a half hour is more time than I've been getting now.  If I can get time in the afternoons as well, that's just gravy.

I'm more determined than ever to get these darned stories out of my head and onto a screen or paper for people to read ... and preferably pay me for.  It's going to happen, darnit.

We're Not Dead Yet!

This bug had a nasty sense of timing.  First Nathan was down for Monday through Wednesday.  Then Alex was down Thursday and Friday (and is still sick).  I managed to get sick Friday and Saturday.  So far, Dave has been spared but I'm betting on the darn thing biding its time.

We are slowly groping towards recovery.  It is amazing how quickly things pile up when I'm sick and can't manage.  I had to cancel our cleaning service for this week since Alex will be home and he can't tolerate the noise of the vacuum.

I have gone through several mountains of laundry.  Both boys went through several changes of clothes a day while they were sick and got a number of quilts as well.  Did I mention I'm not a fan of tummy bugs?

On the plus side, I'm proud of Nathan for making it through the week without biting, even if he wasn't feeling one hundred percent. 

And I got a high level of cuddle time with Alex, which is also rare and precious.

No Biting This Week

Thank the Gods of the School Board and Repetitive Learning Reinforcement.  We haven't had any more biting this week.

I told you last week about how off-guard I was when Nathan's teacher told me he had bit three other students.

We immediately launched a plan where he lost screen privileges for the bites and we reinforced that biting was never an okay option.  We reminded him to tell his teacher if he was upset rather than taking things into his own hands.

I think we were lucky on this.  We got to it before it became an established habit.  It would have been easy to brush it off as an isolated incident (and maybe it was and we went through a lot of work and worry for nothing). 

After a week clear of the behaviour, I'm starting to relax a little.  It'll take longer before I can put it out of my mind as a possibility but I think I did the right thing.

Plague House

Perhaps I exaggerate but we are being struck by a stomach bug, so I'm going to take a few days to concentrate on getting myself and everyone else better.

Then I'll be back.  I promise.

Nathan Quote of the Week

Nathan hasn't been up to giving me great material of late but this weekend, he gave us a good one.  I had told him we would be decorating the house for Christmas this weekend.  Saturday night I asked Dave to pull up all the Christmas boxes from the basement since my hip is now really sore since I began physiotherapy.

On Sunday morning, Nathan saw the boxes.

Nathan: Mommy, you did a great job bringing all this stuff up.

Me: Thank you.  But Daddy did it.

Nathan: (pauses to consider) But you helped, right?

Me: No, sweetie.  Daddy did it all.

Nathan: (smiles as if anticipating a punchline) Are you kidding?

Clearly, my husband needs to help out more around the house.  :)