Tag Archives: asd

A complete 180

I know I haven’t been around much – I’ve had plenty to say but just haven’t found the time to put it all out there. 

Today, I’m frustrated.  Really, I’ve been frustrated for a couple of weeks now.  Colin’s been out of control and I just don’t know what to do – again.

We haven’t changed meds, we haven’t changed routine.  Everything is pretty much the same at the Crazy Antelope House.  Only Colin’s suddenly acting out at every. single. opportunity.

The moment an adult back is turned, he’s up to no good. In the last two weeks he has:

  • bitten Rodeo on the penis
  • spit on his brothers’ food
  • stolen Halloween candy from the kitchen
  • stuck a pair of tweezers in an outlet and blown a fuse (thank god nothing worse happened)
  • stolen a STEAK KNIFE from the kitchen and hid it under his nightstand (which we had turned around to face the wall because he kept hiding things in the drawer)
  • stolen a handful of straight pins from my sewing table and placed them in random places around his room
  • ran AWAY from Rick as he was picking them up from school (he was chasing a friend)

And the latest… today he ran away from school. (more on that in a minute)

We’ve gotten to the point where he has to be in our line of sight during every waking moment.  He’s not allowed to play in his brothers’ room at all and now he’s not even allowed to go to his room, either, unless its bedtime.  So now, it’s almost as if he’s sitting in wait… all I have to do is turn around to pack up leftovers and he’s biting the dog or messing with his brothers, pocketing something that isn’t his, etc.  It’s exhausting.

Today, about 20 minutes before school let out, I got a call.  Colin had run from the school.  I found out later that he was in his special ed class and just out of control.  The Special Ed teacher called the school counselor and asked her to come help.  Shortly after, Colin was spinning and dancing and refused to settle down…then bolted out the door.

He ran out of the school, across the basketball court…and into the woods behind the school.  He refused to come out.  Five different staff members tried to reason with him, but he wouldn’t give in.  Finally, they agreed to let Rick come get him if he’d just come back to the school.

(Rick’s phone went to voicemail so they called me next.  Rick and I then proceeded to try to call each other at the same time!)

Colin’s been suspended for a day.  Rick tried to reason with the staff members, explaining that keeping him home is just reinforcing the bad behavior.  Oh!  If I act like THIS then I get what I want – which is staying home!

Last week, he spent a good 2-3 days pretending he was sick and had lost his voice because he wanted to stay home.  I left work early on Monday to get him and take him to the doctor only to find there was absolutely nothing wrong.  No redness, no drainage, no fever, no strep.  Thursday he went to the nurse again and they called me. I told her if he wasn’t sick (he wasn’t) then he needed to go back to class.

He went back to the classroom and told his teacher that the nurse had told him to get his backpack and walk home – that I’d said it was okay!  Thankfully everyone at the school knows Colin well enough to double-check a story like that.

I don’t know what’s going on.  He does NOT want to be at school, which is obvious.  I don’t know if he’s starting to realize he’s different or what.  That seems to be the case at home – his brothers are definitely noticing more and more.  They have friends; Colin doesn’t really have friends. They’re allowed to go to play at someone’s house for an afternoon; Colin doesn’t get invited. 

I don’t know what else it could be.  Aside from the craziness at school today, he’s been fairly calm when making these horrible choices.  Rick noticed that today – he isn’t manic and impulsive like he used to be during the worst offenses.  In fact, he’s pretty dang calm.

Just this morning, we started having him meet with the play therapist (Dr. H) Robbie & Ryan were going to.  Our plan was to let Colin go every 3rd time, then every other time… slowly phasing R&R out of the therapy sessions.  We explained to them that they are doing great and we are SO incredibly proud of them.  They understand that Colin needs more help.  We also told them the door is open for them to go see Dr. H if they ever feel the need.

Today was his first day of therapy.  I wish he could go back sooner without upsetting the other two, but I don’t see how.

The school also seems to FINALLY be willing to do a psych eval and possibly accept the ASD diagnosis that we’ve had for 2 years now.

I sense some bumpy patches ahead.

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Patience

I’ve never considered myself a terribly patient person.

Determined? Yes.  A hard worker?  Definitely. Intelligent? God, I’d like to think so.

But patient?  I just don’t know.

And yet, for the last 20 months (the length of time I’ve been with Rick and his kiddos), I hear that all the time.  I always think, “Oh, if they only saw how impatient I am when less people are watching!” 

I think we have an additional challenge in that not only do we have a child that’s ADHD/ASD, but he’s also the oldest child.  He’s been the shot caller and the center of attention and the leader of the gang for quite a while.  We’ve spent about a year now explaining to Ryan that – while Colin may be 7 months older – heis really the “big brother” in our house.  That’s a difficult talk to have with a 6-7 year old kid, but he seems to get it.  He has a little brother now and so now he’s stuck with the older brother role of needing to set a good example and the “middle child syndrome” feeling of not getting enough attention.

Whew, I’m rambling again.

I worry sometimes that patience is not like love.  Love is limitless – just because I love your brother doesn’t mean I love you less and vice verse.  But patience?  Patience feels different.  And I often worry that Rick and I use up all our patience on Colin and don’t leave enough for the other two. 

Many times, we overcome this by using the divide-and-conquer method.  One of us will take one kiddo to do something and the other will take the other two.  We try to mix it up – it’s not as if we constantly single Colin out.  Colin has a very different relationship with both brothers.  Ryan is so used to him that he’s almost immune to his outbursts and odd expressions, etc.  For the first 5 years of his life, Colin was Ryan’s litmus for “normal”.  Robbie, however, gets frustrated with Colin often.  Although, at almost 3 years apart, they both have that naive love of life and new things.  Ryan is already getting a bit cynical in his “old age” and won’t watch Sprouts or Nick Jr or play with trains like the other two do.  So we mix it up and it makes things easier. 

 

I feel like this latest change in Colin’s meds is helping me renew a vow of patience.  He’s off the Resperidone (as I mentioned in the last post) and we’ve decided to see how he does with just 20mg of Metadate CD in the AM (as opposed to 40mg).  This is day 4 off Resperidone and day 2 on the lower amount of Metadate. 

This morning, I told my husband that Colin seems to be getting goofier and goofier as the meds leave his system.  He responded (via text on his way home from work), “Oh yeah? Good goofy or bad goofy or funny goofy?”  I wrote back, “Funny goofy.  Like ‘you’re a good day pickle’ goofy.”  (This was one of Colin’s catch phrases about a year and a half ago.  He said it to peole all the time. It’s kind of become a family compliment and we still use it from time to time, even though Colin doesn’t.)

Before Colin went on the Abilify (which was before the Resperidone), he used to say the most random things.  He still did on the mood stabilizer, but not as often.  I know the mood stabilizer was helping to even him out – take away the highs and the lows – but I think it also took away a lot of his joy.  Over the last couple of days, he’s been laughing more.  He’s always been very silly – he makes jokes no one gets and just cackles!  I don’t know how to explain it. Over the last year, if I heard Colin laughing, the hair would go up on the back of my neck because it usually meant he’d just done something terrible.  Now, he’s back to that laugh that tells you he just saw something that he thought was silly or he had a silly thought – it’s mostly harmless laughing. He’s more of a handful now on less meds, but he seems so much happier.  And he’s SLEEPING. Did I mention he’s sleeping?

And you know what happens when HE sleeps more?? I sleep more!

And when I sleep more… I have more patience! 

I’m not sure what the answers are just yet, but I think he’s doing well for now.  As long as the horrific meltdowns don’t start back up again, we may be just fine in this groove.  I can handle crazy happy Colin better than I can crazy angry Colin.  I’d like to get us into the ABA therapy eventually – if we can combine that with less meds, we may find our sweet spot yet.

I’ll start with Colin…

Colin is almost eight years old now.  He’s in first grade – he repeated kindergarten last year.  This kid is super skinny and made of solid muscle because he never stops moving.  I mean never. 

When I first met Rick and his boys, they had an alarm system on the house – not to keep intruders out as much as to keep Colin in. When he was just 3 years old, he once busted himself and his brother out of their rooms (they had the kiddie doorknob covers – no match for Colin, who popped them right off) and they went through the garage, into the car, pushed the garage door opener button…and went for a stroll.  All this happened after Rick had put them to bed and while he was trying to take a quick shower.  When he got out of the shower, there was a police officer in his living room with his wayward kiddos.

At that point, Rick put locks on their doors.  He’s not proud of it, but he didn’t know what else to do.  He worked nights and had a sitter that came and slept over with them, but she wasn’t terribly helpful as far as getting them ready in the AM or anything, and she was a heavy sleeper, too.  One morning, Colin woke up early and had messed his pull up… so he decided to redecorate his room with the poo.  It was everywhere – from the carpet all the way up to the light on the ceiling, splattered on the walls… everywhere. 

Colin has been on Metadate CD for about 3 years now.  He currently takes 80mg in the morning.  About a year ago, our doc added 20mg of Methylphenidate (same thing) in the afternoons to help him ride out the rest of the day.  (He was crashing around 2-3pm every day and just bouncing off the walls.)

I’m jumping around…let me go back…

 

When I met Rick, Ryan and Colin, Rick was working nights and trying to care for the boys (it was summer) during the day while hardly sleeping at all.  They got into some mischief, but nothing life threatening.  On our first date, I was pretty amazed at how patient Rick was with Colin – answering every single insipid question!  Anyone who says there are no “stupid questions” has not been around our oldest for very long!  I’m sure that sounds awful, but you have to understand that Colin doesn’t know how to have a “conversation” in the traditional sense.  So what he does is ask questions that he – typically – already know the answer.  “Are there lights on the ceiling?” “Is that a swingset?” “That picture is on the wall, right?”  Or he tells you how much he loves things.  “I love your new blender.” “I love your big brains.”  “Do you love my Bop It? I love my Bop It. I love a new Bop It. Can I have a new Bop It?”

Colin was diagnosed as ADHD around age 4.  The doctors did not feel he was autistic.  The school said it was too soon to test for autism.

I suggested that we get him tested on our own when he was 6 years old.  We went to see a specialist and he told us that – at this age – it could take several sessions before a diagnosis of ASD could be made. 

It took 30 minutes. 

Watching this doctor give Colin these tests was incredible.  We became very aware of the fact that Colin has no sense of empathy.  He believes that everyone does (and probably should) feel, think, know everything he does.  He also can’t read facial expressions.  Of all the questions he was asked about emotions, the only one he understood was the one he called “disgusting” – a picture of a girl that had smelled a skunk.

The doctor told us that the things he says are learned catch phrases, for the most part.  He knows his parents and teachers smile when he says “I love you!” so he does it all the time – even with strangers.  He hears people tell others that they missed them while they were gone, so he usually greets people with, “I missed you so much!” even if he didn’t know you were gone or has never met you before in his life.

Unfortunately, the school still wants to wait until next year.  I don’t understand the reasoning behind it, but at least we know better what is going on so that we can try to do more on our own.

The same doctor that diagnosed him also prescribed him Abilify.  We started with 2mg in the AM.  After a few weeks, we noticed mild changes, but nothing much, so he decided to give him 5mg/day.  What a change that made!  He stopped having these horrific meltdowns (he used to just lose his mind if something didn’t go his way – would bite or hit or scratch himself, bawl his eyes out, say hurtful things to us, etc). He seemed so much happier.  WE were happier, too, as a result. 

Unfortunately, he seems to have built up a tolerance…and after about a year, it stopped working for him.  He started having meltdowns and lashing out again.  We spoke to his doctor and he suggested giving him another dose of Abilify in the afternoons.  This just made things worse – we didn’t keep it up for more than a few days.  It’s awful to see him like that.  And it brings stress to the entire house as well. 

At that point, the doctor decided to take him off Abilify and try out Resperidone.  The first week was okay – he was hungry as all, which was great because he is so skinny.  It made him tired, too, which we hoped would work to our advantage!  But after a week or so, we noticed it was causing him to be more nervous, more paranoid… he wasn’t sleeping, either.  He wasn’t having meltdowns, but he was sucking his thumb again and biting on his fingers.  He hadn’t sucked his thumb in months, and now we couldn’t keep it out of his mouth. He’d stay up until 10 or 11pm – constantly getting up with some excuse or another, turning his light on and trying to leave it on.  And then he’d wake up at 5am. The less he slept, the more anxious he’d get.  We called the doc again and said this isn’t working…he told us to take him off the Resperidone and gave us the number of a recommended Pediatric Psychiatrist.  We’re going to get into them ASAP – thankfully they take our insurance.

Doc also said the high dose of Metadate in the AM may be causing some of his issues.  He suggested we try taking him down to one pill in the am – 20 mg. 

We took him off the Resperidone on Sunday.  The first two nights, he still had some issues… but last night was wonderful.  He went to bed at 8:30pm and slept until 6am!  He’s having issues with defiance and speaking out – all the things that were going on pre-Abilify – but we will wait it out and see what the psychiatrist has to say.  More than anything, I just want him to be happy and not hurt himself or his brothers. 

This morning I just gave him the one Metadate 20mg pill…and sent a warning email to his teachers!  (He spends half his day in the mainstream classroom and the other half in special education, where they essentially reinforce the core subjects taught by the primary teacher and cover the non-core subjects as well.) I told them he’s a little on the hyper side and speaking out, etc, but at least he’s in a good mood from all the sleep he got!

Fingers crossed!