Monthly Archives: March 2012

Right knee

Almost every pair of jeans we have for Colin is ripped – and always on the right knee. He loves to throw himself to the ground and slide or spin.

Today is a really nice day in our area – warm enough, overcast and a light breeze. We were headed to the park, and I was putting shorts on all the boys. I hesitated at Colin’s dresser – he’s been extra bouncy lately and I was worried he might hurt himself if he was wearing shorts. Against my better judgment, I put shorts on him anyhow.

Within 15 minutes of our arrival at the playground, he was holding his right knee and having a meltdown. When I asked him to walk with me to the bench, he refused to bend his knee.

He’s been mortally wounded!
See??

image

For a kid that gets hurt so often, you’d think he’d learn to get over it or at least be more careful. Of course we know that’s not possible (yet). His adhd keeps him bouncing off the walls and ASD leaves him not knowing how to cope.

So he sits and rocks for a while. Taps a beat out on the bench while he watches everyone around him.
In a couple of hours, when it dries and has a bandaid on it, he’ll forget all about it. An hour after that, he’ll do a spin or a slide and crack it open again…and we’ll be back at the beginning!

For now, I won’t lie…I’m kinda enjoying quiet Colin as we sit on the bench, talk and people watch.

Just a quick note…

Called the pediatric psychiatrist and booked an appointment!

Bad news is they can’t see him for 2 weeks.

Good news is… the day they can see him is a day that I’m already scheduled to be off from work – yay!  He has an AM appt which works great since we have things to do and places to go that afternoon with our youngest.

Also, we’ve gone back to the 40mg of Metadate in the AM. I know it seems like we didn’t really give it a chance (just 4 days), but it seemed to be having a marked effect on his behavior at school and he’s been just… wired for sound, as I call it.  Had a few meltdowns, but manageable.  Goofiness is still off the charts!  He asked me to take a video of him yesterday at the park.  He said, “Take a video of my silly face, Mom!!”  I hit record and he proceeded to move in what appears to be fast forward…but that’s real time for Colin!! He made silly faces and wiggled and giggled…and for the grand finale he wagged his backside at the camera. (“Butt” is one of Colin’s favorite words.  He writes it on everything and asks me how to spell it at least three times a day!) 

He then made me show him the video about seven times, cackling every single time.

I might share it later. Time to get back to work!!

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!

Crazy Antelope

One day my husband and I were doing the kissy-face thing as newlyweds are apt to do.

Him: I love you.

Me: I love you, too. So much.

Him: No, I mean… I love you like a CRAZY amount.

Me: [confused] Wait, what?

Him: What? I said I love you a crazy amount.

Me: Ohhhh! I thought you said, “I love you like a crazy antelope!”

 

And…it stuck.

Where to start?

I’ll begin with a little background history.

My husband, Rick, and his first wife were foster parents for about 2 years and adopted two children during that time. 

Colin was about 5 weeks old when he first came to their home.  His birth mother went to one CPS hearing and then disappeared, never to be heard from again.  He was malnourished and wound up unable to swallow solid foods until he was around 1.5yrs old because – as a baby – his mother would put peanut butter in his mouth to shut him up. He learned how *not* to swallow as a defense mechanism.  During those first five weeks of life, he was rarely – if ever – held or loved the way a little baby deserves.  This is the root of many of the issues he still faces today.

Ryan was a little over a year old when CPS brought him to live with Rick and his first wife.  He had been removed from his home at birth as his older sisters were already taken away from their mother years before.  (He spent his first year in another foster home that was closed down.) His sisters were adopted by another family (we keep in touch with them regularly) but they were an older couple and weren’t capable of taking on a baby – his sisters are 6 and 14 years older than he is. Rick and his wife adopted Ryan a few months later. He was their last foster child.

Ryan was a quiet boy – hardly spoke at all in the beginning.  Colin is 7 months older, so he did most of Ryan’s talking for him. 

Not long after Ryan was adopted, Rick’s first wife passed away due to complications from diabetes and medications. He was a single father of two very unique boys for over 3 years.

My story is a little more simple.  I married at 24 and had Robbie when I was 26. He was born via emergency c-section 5 weeks before his due date (I came down with HELLP Syndrome). In 8 days, he was out of the NICU and on his way to becoming the crazy, smart, silly little boy he is now.  I divorced in 2008 when Robbie was 15 months old. His father moved back to Australia and has very little to do with Robbie now.

 

In June of 2010, Rick and I met for the first time. 

While trying to figure out when we could meet for a traditional date, we decided to say screw it and meet for lunch at the mall – with all three children in tow.  We had lunch at California Pizza Kitchen and then took the kiddos to the play area so we could talk for a bit.  I was hooked from day one.

I knew there would be challenges with Colin.  He had been diagnosed as ADHD for quite a while by that point and was taking Metadate every morning. Oddly enough, what I didn’t expect was how Ryan and I would interact.  He had very little female influence in his life at that point in time – in fact, he referred to everything and everyone as “him” or “he”.  He was also dealing with some anger issues.  He would get this dark look in his eye and you just knew he was going to get himself into trouble.  Things were a bit chaotic.  He would be sweet to me one minute and defiant the next.  I wasn’t sure how to handle him at all.  All I knew at that time was what little boys could be like from birth to about 3 years old.  5 and 6 year olds were beyond my comprehension!

Robbie also had to learn how to play with older boys – and how to deal with Colin when he acted a little “off”.  He did amazingly well with the idea of sharing his mom.  He did not, however, take so nicely to having a new adult telling him what to do and trying to discipline him, etc. 

 

Fast forward to today.  Rick and I have been married for a little over a year.  Colin and Ryan are both in 1st grade and doing fairly well.  Colin’s meds have changed a time or two (as has his diagnosis – now diagnosed as being Autistic as well as ADHD) and we found out Ryan was in desperate need of glasses.  We’ve put Ryan and Robbie into play therapy with an amazing psychologist that has helped them both with their behavior issues at school and home.  We’re hoping to convince our insurance provider that they should cover Colin’s ABA therapy so that we can get that rolling – meds alone are not helping and likely just masking some of the issues he’s having.  Robbie is in private kindergarten and doing well.  Both Ryan and Robbie play soccer.  And we’ve added two crazy dogs to our insane household.  Rodeo came first – he’s a lab/pit/?? mix and the sweetest dog that’s ever lived.  He is so gentle with and protective of our boys.  However, he was lonely whenever we’d go out on the weekends or at night.  Sooo…we found him a playmate – Miss Chloe.  She’s a greyhound/border collie mix – tall and skinny with the black/white border collie markings.  Just gorgeous.  Even if she is kind of a dip.   She’s a snuggler and has twice the energy Rodeo has, so she keeps him pretty well worn out. 

 

There you have it – the Readers’ Digest version of our background.  Moving forward, I plan to discuss the challenges of raising kiddos – special needs and otherwise – as well as post recipes, home improvement adventures and anything else that pops into this garbled mind of mine.