Tag Archives: autism

Quitter (or “Understanding Your Limits”)

I could come up with a dozen different titles for this blog entry.  I wonder if any of my old blogger friends will see this – I’ve poked my head in on this site a few times in the past year, but I haven’t been diligent about reading like I should…and I’ve clearly stopped writing for over a year.

As usual, I’m not sure where to begin. (I seem to start all my blog entries off that way.)

I mentioned my health issues from last year in my last journal entry – swallowing issues, colon cancer, etc.  I took all of that as a sign that my body was telling me I needed to make changes.  I was under a lot of stress. I think the swallowing issues are closely related to my stress levels.

I was not being a good mother to any of our children. I don’t feel I was being a good wife, either. I was finding any way to escape that I could.

So much I want to say here, but when I’ve looked online for women in similar situations, all I’ve found are throngs of posters discussing what horrible people they are for not only having negative feelings towards their special needs kiddo, but – God forbid – discussing those feelings publicly.

Maybe I just wasn’t meant to have three children, period. Forget the “step” and the “special needs” labeling – three children can be a handful. Many of you know this.  I don’t know how some women do it alone. (I’m looking at you, Rose!!)

Late last year, I started asking myself the hardest questions of all:  Can I do this forever? Can I continue living my life the way I have been? Can I get past the anger, frustration, anxiety and stress I feel as a mother of a child with special needs?

One morning – following an especially trying evening where Colin had peed on the floor in his room for no apparent reason – I lost my cool.  I was exhausted. I was tired of being disrespected. I was still angry from the day before.  A million excuses come to mind, but none of them is legitimate – none of them excusable.  I grabbed Colin by the back of the neck, got in his face and yelled. I made him cry. The bus had just shown up and – without apologizing or trying to calm him or myself – I sent him on his way and slammed the door behind him, then burst into tears myself – right in front of the other two boys.

By that point, I realized I was just angry all the time.  Just seemed like every day, something was setting me off.

Later that day, I got a call from CPS. When Colin got on the bus crying, they asked him what was wrong.  He told them I choked him. (Not what happened, for the record – but I understand that “grabbed the back of my neck” isn’t a phrase that would spring to mind for him.)

We went through the CPS process – we were interviewed, Colin was interviewed, the other boys were spoken to and photographed. In the end, they agreed that this wasn’t an issue of a child in danger – this was a mom who had a bad day and knew she’d made a mistake.

Though, at that point, I was already considering leaving. I’d done some soul searching and wasn’t sure I could handle staying – this CPS incident scared me even more.  What if one day I lost my cool with Colin and it cost me Ryan and Robbie as well?  What if one day he pushed me so far that I did something I wouldn’t be able to take back?

But these are things we can’t discuss.  These are thoughts you can’t even talk about with your psychologist.

My stomach is in knots sharing this, but I feel it needs to be said.  How can someone get help if they’re not even allowed to discuss it?

I remember the first time I made Robbie cry.  He was maybe a year old, sitting in my lap… he reached for something dangerous – hot coffee maybe? – and I raised my voice at him for the first time.  It shocked him and he started crying. I felt like a monster making this poor baby cry! I held him and apologized.

Aside from the occasional hand pop as a toddler to keep him from touching something he shouldn’t, I never hit my child. Never hurt him intentionally.

When I moved in with Rick, I didn’t know how to handle older kids.  I went from mom of a 4 year old to mom of a 4, 5 and 6 year old.  I went from someone who had only a very loose understanding of autism and ADHD to someone who’s world seemed to revolve around these diagnoses.

A friend said to me recently, “I don’t think you really understood what you were getting yourself into.”  I think he’s right. I thought I could swoop in with my patience and research abilities and find a way to “fix” things.  I tried so many things, and while I believe I did a lot of good…there are some things that aren’t “fixable” – they need to be accepted. Maybe acceptance is where I’m struggling.

I’m not trying to blame everything on Colin. Or Autism. Or ADHD. Trying really hard not to blame myself – I was doing that for months. Still do.

At the end of the day, you have to understand your limits. I don’t know what the answers are, but I decided that leaving was what had to happen.  Rick and I have separated.  I signed a year lease at an apartment complex not too far away – I didn’t want to move Robbie around during the school year, no matter which way we decided to go in the end. Ryan comes and stays with us every other weekend, which I love – I’m so thankful that Rick agreed to that.

I’m not sure what the future holds. I’m not sure that we’ll ever be able to go back to the way we were.  But I know that my son needs his mom to be happy and healthy. (I could/should write about how the whole situation was affecting him as well.) He needs the mom he remembers that loves snuggling and singing and playing games with him. Not the mom who is always angry or tired or stressed out.

I still worry about the selfishness of this decision. Rick thanked me at one point for acknowledging that I felt the way I do and for speaking up and leaving vs. bottling it up and/or becoming abusive.  Leaving is never easy – doesn’t matter what the situation is.  I’ve had people tell me I’m brave, but I feel like a quitter.

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Roller Coaster Ride

what a ride!

That’s roughly what the last few months have looked like.

I logged in to write about it yesterday (as I have a few times before) and once again ran out of time.  However, I noticed something.  Even though I haven’t posted in entirely too long, people are still visiting this blog.  People are still entering searches that lead them here.  Therefore, I should keep writing.  It’s why I started this blog in the first place.  Once upon a time, I was searching for answers and I stumbled upon someone else’s blog.  She was a single mom with an autistic child. And unlike some of the other blogs I’d read, she sounded like me.  But her blog was long since given up.  I wished she’d kept it up – if she had, her son would have been roughly the same age as Colin.  What are they up to now? What have they tried? What worked? What didn’t?  I’ll never know.

(Even as I try to write this, I’ve been interrupted twice already!)

Here’s what I wrote on 12/21, but never finished the entry to post:

This past Wed (12/19), Colin went back to see Dr. L (psychiatrist).  We did something we should have done before, but never had – we took notes almost daily for the 2.5 weeks Colin spent on the new medication schedule.  Mrs. E (special ed teacher) also emailed us a few times, letting us know what she’d observed at school.
The first week, Colin was doing well in the AM, but not so much in the afternoon.  Rick was giving him his afternoon dose of Clonidine at home because we had not gotten the form filled out and faxed to the school yet (this is sometimes a challenge with our doc’s office).  By the second week, he seemed to have issues all day long – the meds were not affecting him nearly as much and he was back to distractions and hyperactivity.
Dr. L has upped his Adderall XR to 20mg/day and upped his dose of Clonidine in the AM to .1mg (he was taking .05mg before).
Yesterday was the first day on the new dosages.  He was downright zombie-like within 20 minutes!  After breakfast, he plopped down on the couch and buried himself in pillows.  When I told him to go get dressed for school, he told me he couldn’t get up.
Yikes!!
I asked him to try and he realized he was fine and able to go about his business, just a little slower than usual.
I got a phone call at lunch from Mrs. E – she wanted to discuss the new medications.  She told me he seemed very disoriented first thing in the morning.  I told her that concerned me, too.
THEN she told me that they’ve been working on double-digit addition for a while now and Colin has not managed to do a single problem on his own yet – he asks her for every step on every single problem, unable to recall what he needed to do each time.  Yesterday?  He sat down and did TWELVE problems without ANY help.
And then he wrote a full-page for an assignment he was given.
I almost fell out of my chair.  I had tears in my eyes, that’s for sure!
Things were good for a bit.  Then the anger started to amp up again.  At our psych visit in January, we expressed concern over the anger and Dr. L had us add 25mg of Seroquel in the AM (he takes 50mg at night).  We hoped that would help.  We also got the form signed and turned in so that he could take his afternoon dose of Clonidine at school instead of after he got home.  I thought maybe – just maybe – we were getting there this time.  Just a tweak here or there!  We’ll be fine!
And then over the last few weeks, school days have taken a turn for the worst.  Episodes of cursing, spitting, hitting, kicking, throwing his shoes, refusing to work, etc.  Yesterday was the worst.
I got a call from Mrs. E (sp ed teacher) yesterday afternoon – she was very concerned.  He’d acted out in the AM a bit, then was throwing food at lunch.  After lunch, they sent him to Mrs. E where he refused to work, kicked his chair, threw his shoes, started kicking the wall, cursed at his teachers and spit.  They took him to an empty classroom that’s sometimes used to let kids decompress.  No stimuli in there – empty room, blank walls.  They hoped it would help him calm down.
Instead, he amped up.  He started running circles and doing cartwheels and literally bouncing off the walls.  He never slowed down, just kept getting worse. After a while, they realized that wasn’t working and brought him back to Mrs. E’s room.  There, he continued to act out and then started hitting and kicking his teachers.  He had to be restrained by one of them until he could calm down.  He’s never gotten that bad at school before.
Once he was calm, he apologized to them.  He said he was sorry for hitting and spitting and saying bad words.  Then he sat down and took his spelling test and made 100.
They thought he might have calmed down enough to go back to the gen ed class room for the rest of the day, but when they went into the hallway, he started spinning and they knew he had to stay in the sp ed room.
Mrs. E knew Colin was listed as a “walker” and said she was going to walk home with him because she was really worried about his behavior today and didn’t think he should be walking home.  I explained that they only go across the cross walk and then Rick meets them and either walks home with them or they ride in the car.  She said, “Okay, I’ll keep an eye on him until he gets to Rick, then.”
I love Mrs. E. I don’t know how she does all that she does every day for Colin (as well as the other kids in her care).
We put a call into Dr. L to see what he thinks about everything – haven’t heard back yet.  I just don’t know what to think. It’s almost as if the extra Seroquel has made him worse instead of better.  Seems to go that way with any sort of mood stabilizing drug we’ve tried.  In the beginning, it seems like a miracle drug… then suddenly he takes a crazy left turn and we wind up worse than we were before.
In better news, we’ve been fighting with the school to get Colin a psych eval through the school system and they have FINALLY AGREED!  The testing will be sometime in the next 60 days.  Long story short, they did not like the testing that we had done 2 years ago and refused to accept his autism diagnosis.  They say they think it could be FAS or something else masking as autism.  I told them I don’t care WHAT it is, we just need answers so we can help him!
As I wasn’t sure whether or not we’d win this battle, I had also been looking for an independent evaluation again.  This time, touching on points that the school said they wanted to see, etc.  Our play therapist the kids see recommended a colleague of hers.  However, she’s out of network and it would have been very cost prohibitive.  That doctor, however, is a professor at TWU as well and she offered another option.  She has 2 grad students that need to complete a psych evaluation for their coursework and said that if we let them perform the evaluation, she will monitor the entire process and it would be free of charge.  We went ahead and jumped at the chance.  We’re meeting with them today for the evaluation.  I was tempted to let Rick take Colin and I’d stay home with the other two, but the more I thought about it… the more I really would like to stay, especially if they’ll let us observe the evaluation.  I’m interested to see if there are any changes in his answers from two years ago… also want to see what exactly they ask him.
Up again, down again… I know this is so hard on Colin, just as it is on us.  I don’t know how to help him, but we’re trying our best.

Where to begin? (med change & other issues)

After the most recent issues, we requested an ARD meeting at the school.  The meeting was attended by me, Rick, school principal, diagnostician, psychologist, speech therapist, Colin’s general education teacher and special ed teacher.

When we first arrived, the principal sat at the head of the table, Rick and I sat on one side.  Mrs. E (sped teacher) came in and sat right next me.  That made me happy – she’s so helpful and supportive.  She cares so much about Colin.

During the meeting, we learned a lot.  Colin’s been exhibiting other strange behaviors we were unaware of before.  Seems everyone’s noticed a changes in him over the past month and half. He’s been regressing.  His OCD tendencies have been getting in he way of his school work.  He’s momentarily not recognizing people or places.  He’s seeing people who aren’t there. (When he ran from school recently, he was looking for Pop – my stepdad – in the woods. Another time, he was adamant he saw Rick out in front of the school and needed to go talk to him.)

It was suggested that we take him to a neurologist.  We agreed.

The school maintained that his services wouldn’t change with an autism diagnosis.  The school psychologist also suggested that Colin may actually be suffering from FAS (fetal alcohol syndrome), which can mimic Autism.  He seems to feel that too many rush to label children as autistic (he blames that for the increase in diagnosed cases) because it’s the “in” thing to do.

Here’s the thing, though.  I’m not Colin’s birth mom.  I do not take any diagnosis personally because he was never in my womb.   Rick and I had nothing to do with him until the worst damage had been done. (I say that because I’m sure we’ll mess up our kids in our own way, but it would never be through negligence or anything done intentionally!!)  So, if it is FAS, great, let’s find out and move on from there.  I’ve been reading up and I don’t believe FAS fits.  Sure, he exhibits the behavioral aspects of FAS, but none of the physical characteristics. And all of those behavioral aspects are similar to Autism, so I’m not sure how FAS can be assumed or thought to be more likely than Autism. For all we know, it could be neither – his psychiatrist pointed out that he could just have MR (mental retardation).

How are we to know without testing?

And the school still does not want to test.  They went through the list of 13 items that are to be considered on the IEP of an autistic child and either gave us the info for how to reach certain groups or explained how he could qualify for certain services without a diagnosis, etc.  The school psychologist also said he meets with another boy every other week for 30 minutes to provide behavioral/social therapy. He’s decided to add Colin to the meetings because he feels it would help both boys. (The other child is also in 2nd grade.)

On Thursday, we met with Dr. L (psychiatrist) to discuss the changes everyone has seen in Colin lately.  We brought along a letter from his special ed teacher as well.  I think that really helped some of our concerns sink in for him – a third-party was also noticing issues.

Dr. L started by acting shocked that no one else had mentioned we should see a neurologist before. (Um, HE never said that, either!)  He suggested we speak to our pediatrician and ask her for a recommendation.  He also said we need to submit a formal request to the school asking that they evaluate Colin – no matter his diagnosis, if we don’t know what we’re dealing with, we may be missing something.

He also wanted to change Colin’s meds.  From everything we’d told him and from what he’d read, it just sounded as if Colin’s anxiety level was off the charts.  When the doctor asked if kids at school were mean to him, Colin said no.  He said, “Are they bothering you?”  Colin said yes.  “How are they bothering you?”

“They make noise,” he answered.  That’s been another factor affecting his academics – he’s been acutely aware of any noises in the room and hallway lately.  The diagnostician said she could hardly complete the yearly tests she gives him – in a quiet room – because every time someone walked down the hall or the A/C kicked on, he would stop and ask what the sound was, why it was happening, etc.

We’re back on Adderall.  We told Dr. L that the biggest issue we had with Adderll before was that it helped his attention/focus, but did nothing for his hyperactivity.  Dr. L has had Colin on a very low dose of Clonidine in the AM lately, and said that should help with his hyperactivity.

As of yesterday, he’s taking:

  • .05mg Clonidine, 25mg Seroquel and 15mg Adderall XR in the AM
  • .05mg Clonidine at midday
  • .1mg Clonidine and 50mg Seroquel at night

Yesterday was a pretty good day.  He was relatively calm and collected most of the day.  He even sat down to work on building things with Legos again (something he hasn’t done in quite a while). He slept through the night, but woke up at 5am.

Unfortunately, he also seems miserable.  Ever since our bout with Resperidone back in March, I’ve been more aware of his moods, not just his behavior. (The Resperidone made him absolutely miserable. I hadn’t realized HOW miserable until we took him off of it and saw goofy/happy Colin again.)

He’s not laughing like he usually does.  In fact, yesterday, I only saw him smile a few times.  (Until around 7pm when his meds were wearing off, of course.)

It’s a fine line.  I want him to do well at school and have the tools/meds he needs to succeed, but ultimately…I want him to be happy as much as anything.  Today is day 2 of the Adderall/Clonidine combination and he’s been emotional and moody. (And, as I watch him playing the Wii and lining the stools up just so, I worry that his OCD tendencies will always be an issue.) He’s playing his favorite video game right now (pinball) and looks focused but joyless.

We’ll see how the next few days go.  I agree with the doctor that we need to move away from the Ritalin.  I don’t think it’s helping him any more and the amount he was on was higher than an 8-year-old boy should be taking (80mg of extended release in the AM and 20mg of  quick release in the PM).

This coming week, I’ll get my written letter to the school diagnostician requesting that they evaluate Colin.  If they still refuse, we have a colleague of our play therapist that does academic psychological evaluations and can hopefully help us.  I’m also going to find a neurologist and get an appointment as soon as possible.

All this with the holidays around the corner!  At least we have most of our shopping done and – between the two of us – we’ll be home while the kids are out of school (Rick has off the week of Christmas, I’m off the week of New Year’s).

As I said to Rick when we were both feeling lost and frustrated last week: WE WILL FIGURE THIS OUT.

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.

And…we’re back!

What a great week!  (Can I go again? Please??) 🙂

Where to start?  I only have one kid back so far, so we’ll start with him!

Colin was so excited about camp – we’d been talking about it since the Open House in April.  For those who didn’t see my previous post, the camp I’m talking about is Charis Hills.  We arrived and were sent to check in Colin’s meds as he was swept away for a mini-physical and picture-taking.  While in line, we got to speak to a couple of other parents – their kids had been campers there before.  They raved about how much fun their kids had and how much they loved this camp and everyone involved. It was really nice to have people set our minds at ease right away!

In the medication line, I couldn’t help but notice the bags other kids had.  Our doctor had told us that Colin wasn’t on as many meds as we might think, and maybe he was right. Some of these kids had enough to fill a gallon sized Ziploc bag.  Colin’s four medications didn’t seem like much in comparison!

We double-checked his activities – apparently he and one little girl named Emily were the only ones signed up for dance!  I tried to sign him up for activities that didn’t involve sitting quietly or shooting anything (boating, fishing, archery and riflery were OUT!).  When we turned around, he was already on his way to his cabin! 

In the cabin, we helped him make his bed – top bunk! – and then it was time to change into his swim clothes for a swim evaluation.  He was pretty much pushing us out the door.  I think he must have said “Bye, Dad!” at least three times before we left!

One of my favorite things about this camp is that they have their own shutterfly account and they post pics daily!  That was really nice – we’d check out the site each night and see what he’d been up to.   Here are a few:

in class – they had study time!

Testing out the water

Swim lessons! Colin earned an award for putting his head under water before the week was over!

I found it pretty funny when we picked him up that one of the first things his designated counselor mentioned was how early he would wake up.  Apparently the kids were supposed to sleep until 7:30am – yeah right!!

 Otherwise, they said he did pretty well.  They sent home a little evaluation sheet that discussed how he did at meeting the goals we’d asked them to help him work on (assessing dangerous situations, developing a less inflated sense of self, etc).  They essentially said what we knew – that he doesn’t think before acting and will apologize after the fact, so he knows wrong from right, he just doesn’t have the impulse control to stop himself.  He got in trouble mid-week for touching/taking other people’s things, but he gave them back immediately without argument, so that’s good. All in all, he had a blast.  He can’t wait to go back again next year!  We will probably hear about “sleep away camp” (as he calls it) for months to come. — As this blog has gotten fairly long-winded already, I think I’ll save my yabbering and pictures on our kidless vacation for another post!  I need more pictures from the camera anyhow.  It’ll be like one of those old slide-shows your grandparents made you watch as a kid!  (I know, you can’t wait, right??)

Holding my breath!

We found a sitter.

Holy smokes! We found a sitter!!

Where?  Craigslist.  I know. I know.  I thought the same thing, too, but I was kinda desperate and our other efforts were leaving us fairly empty-handed.

I posted an ad Monday night.  We’d just met another potential sitter – the only one at that point – and I just didn’t think there was any way it would work out.  a) She doesn’t like dogs. We have two, so they would have to stay with Rick in the bedroom. b) She has an 8 year old and 1 month old that would have to come with her.  I didn’t think that would be a big issue until I saw it in action.  Our house was complete chaos for the 30 minutes she was there.  The 8yr old was adding to the silliness of our boys and the baby would have been a complete distraction had Rick not been helping.  And  c) She doesn’t have a phone…and she’s staying with her mom while she and her baby’s father work on things.  (What if they made up and she moved back in? She has no car and wouldn’t be able to continue working for us!) Just too many red flags for me.

So… I posted the ad.

I mentioned we needed someone energetic and patient and mentioned one of our sons is autistic and has adhd.  I posted the pay rate (which boils down to roughly $7/hr).  I know it’s cheap, but it’s just 4.5hrs/day and 4 days/week… no meals need to be served or anything.  Just give them a snack around 3pm and keep them from burning the dang house down. 

About an hour after I posted my ad, an ad went up from a sitter looking for work.  She listed the same area we live in and put that she has experience with ADHD children.  Her number, however, was an out of state number.  I thought (in my paranoid brain) this had to be some kind of lure.  I didn’t answer the ad.

Another hour passed, and I received an email – from the same girl who had posted the ad after mine!  She gave me her number and attached a picture.  I still thought this had to be some kind of a joke, but maybe not…? 

We exchanged a few emails – she’s relatively new in town.  17 and graduated from high school early.  She lives very close by and her younger brother – who is Colin’s age – has ADHD.  I decided to throw caution to the wind and have her come over.

She showed up and she’s REAL! 

We talked about what’s expected. She loves dogs – her family has 2 of their own.  We joked about how we were a little scared of this whole CL deal – she was, too!  She was great with the boys.

After talking, we asked when she could start. She said any day was fine.  Then she confessed that she’d had another interview earlier that day.  “I’m totally picking you over them, though, I just want you to know that!”  She said not only was that job a little out of her comfort zone – they had a baby, a toddler and a 9 year old and wanted her to work about twice as many hours – but our family reminded her of her own. 

Wait, what?  Did she just say that?

I guess maybe we’re a little more “normal” than we thought we were.  🙂

She starts today – a little trial run before she has 4 full days in a row!  She arrived 10 minutes early and ready to go.  I’m holding my breath, hoping the day goes well. 

Mostly, though, I’m just incredibly relieved. 

The Good, The Bad and The Ugly

The Good

It’s summer! Yay! (I don’t care what the calendar says – school is out, so it’s summer!)  The kids can sleep until whenever because I no longer have to rush to get them dressed in the AM – Rick can dress them when he gets home if I don’t get around to it.  And the only lunch I have to make is mine!  I left the house at my usual time this AM and got to work almost 20 minutes early – hurray for no school zones!  Also…it’s time for my favorite “sport” of the year – swimming. (I say “sport” not because swimming isn’t a sport…but because it’s not really a sport when I do it.)  I love going to the pool, lake, river, beach – wherever.  I just want to be in the water.  When I was younger, my sister could always outrun me, but she couldn’t out-swim me. (Pretty sure this has changed now that she’s gotten into surfing.) The water is always the one place I feel remotely athletic.

 

The Bad

Whew, boy, is it HOT by the end of the day!  Mornings are fantastic – 70’s and a bit breezy.  But by the time I get to my afternoon break and go for a walk, the air is so thick with humidity and heat, I get winded by the time I’m back at the office.

And the kids don’t seem to realize they can sleep in!  (By “sleep in” I mean 6:30am – that would be heaven!)  Colin was up at 5:30 this morning – he was sleeping on the couch again.  Not sure what to do about that. 

We also had a series of storms sweep through recently that left our fence in quite a state. Thankfully, no other damage was done, but now we have to figure out what to do with the fence on our own because our insurance deductible is too high to even bother going that route.  Rick has a friend from work that’s going to come out this weekend and hopefully not charge an arm and a leg!

 

The Ugly

The church-sponsored day camp (free to the public – donations only) that Colin and Ryan went to last year is not happening this year.  I was really worried this might happen.  It was such a blessing last year.  Colin was kicked out of daycare the summer before that. 

The 2nd day of camp last year, someone walked up to me and said, “Are you Colin’s mom?”  My heart sank.  Please, don’t kick him out, I thought.  Instead she said, “I wanted to ask you something, but I hope I won’t offend you.  Is he…autistic?”  I was still worried.  “Yes,” I said.

“My daughter, is, too, that’s why I was wondering,” she said.  “Don’t worry about him.  I will keep my eye on him.”  I just started crying.  I don’t know what we would have done last summer without that camp.

And now this year…we have to figure it out.  The good thing is that Robbie is out of daycare now, so we can afford to hire a sitter for the summer.  Just someone part-time so Rick can get to bed – he can continue sleeping when I get home.  We don’t have anyone lined up yet, but have a hopeful or two.  One lady was recommended to us by a good friend, but she flaked on showing up yesterday as we’d agreed to and she currently doesn’t have a phone – she calls from her mom or brother’s house.  And she’d have to bring her 8 yr old and newborn baby with her.  Just…so many red flags.  Still not counting her out – she’s supposed to come over today for us to meet.

Last night, after she flaked on me, I posted on FB asking friends to let me know if they knew anyone interested in a 20hr/wk babysitting gig.  One of my local friends gave me the name/info for a local high school girl that she’s friends with!  I’ve messaged her – hopefully if she doesn’t want the job, she will know someone who does. 

The Ugly, though, is going to be most of this week.  Rick is home with the boys today – no sitter or other means of distraction for them today.  Colin had everyone in the house on edge by 7am with his antics – he woke up full throttle today and was still bouncing as I left.  We’ve tried adding an Adderall booster (short-acting tablet) to the XR capsule, but giving him more Adderall just seems to make things worse.  His meltdowns increase and it doesn’t seem to do anything to put a damper on the ADHD.  Adderall seems to help his focus, but not his hyperactivity. 

Thankfully, tomorrow my mom (who just had surgery this past Thursday) volunteered to take them from Tuesday afternoon until Wednesday afternoon.  I hope she doesn’t regret that!  My stepdad is pretty good with them – he has an amazing amount of patience.  That will just leave us Thursday and Friday to get through.  Then, hopefully, we’ll have something in place starting next week.

Fingers crossed!

Another Medication Update (and a visit from Aunt Missy)

Our psychiatrist’s mother passed away over the weekend.  We had an appointment this past Friday morning and got a call late on Thursday saying Dr. L had to leave quickly to help his mother and would not be there on Friday. They rescheduled us for Tuesday morning. 

Late Monday night, we received another call saying Dr. L had to reschedule again.  Poor doc – I can only imagine how stressful that all must be.  During it all, he still managed to return our calls and offer advice, etc.  He wrote us a prescription for 20mg of Adderall XR (extended release) and for clonidine – 0.2 mg this time.  He said if the XR didn’t last long enough, we might have to give him a booster in the afternoons. We’ll see how that goes.  He also said that if the 0.2mg of clonidine doesn’t do the trick, we’ll need to try a sleeping pill instead because he does not want to give Colin more clonidine than that. 

So far, the Adderall XR seems to be working out fairly well.  He’s still adjusting to it – and we’ve had family visiting, which can add to the chaos – but so far, so good.  And the 0.2mg of clonidine seems to help him fall asleep easily.  Unfortunately, he’s still not staying asleep, but I’m not sure if anything can be done there.  He has – twice this week already – gone back to sleep after waking up too early.  That was completely unheard of before.  The fact that he can do this now makes me think this is a good fit for him.  Of course I think it would be better for him to sleep through the night, but going back to sleep is a pretty wonderful alternative!

My sister is in town this week!  To the kids, she’s Aunt Missy.  And boy do these boys love their Aunt Missy! 

She may not have any of her own kids, but my sister’s done more than her fair share of babysitting over the years.  She’s great with kids.  Our boys go nuts when she comes over. 

For the last few years, she was living in Hawai’i and we didn’t see much of her.  She’s always been the cool aunt that sent the kids presents and the times they did get to spend with her have definitely left a lasting impression.  My sister is FUN.  She has ten times the energy I have and can just about keep up with these crazy guys.  They had her playing in the sprinklers, hiding in closets, picking them up, snuggling, etc. All three have been vying for her attention at the same time – it’s both hilarious and maddening to witness.

Ryan and Missy playing in the sprinklers

She’s so patient with them. I love that.  There aren’t many people who can stay as calm as she does around our boys – they could stress out Mother Theresa after an hour or two!  Whenever someone new comes around, Colin goes into hyperdrive – he has to share everything  he’s ever thought was neat or different in 10 minutes or less and ask at least a million questions.  The other two pick up on this and generate their own brand of crazy/silliness.  It’s mostly just them wanting the attention, I think, but it can be incredibly frustrating when all three peacocks are flaunting their feathers at the same time.

Monday night was insanity.  She stayed with my mom on Tues night…and thankfully things were a little calmer when she came back last night.

I wish I knew how to help them calm down in new situations.  The way they all start spazzing out at once makes me dread visitors and/or visiting others sometimes.  This is one of those moments when I think it becomes an extra challenge to have the oldest child as the one with special needs.  He’s the big brother – he’s “supposed” to set the example.  But that’s not possible.  And it’s not easy to explain to little ones why acting like your big brother isn’t always the best idea.

RULES by Cynthia Lord

What a wonderful book.  I wish this could be on the required reading list for 5th, 6th or 7th graders everywhere (it might already be at some schools – I have no idea!). 

…I keep re-writing this review…my words aren’t doing it justice…

This book tells the story of approximately a month in a 12-year old girl’s life.  She’s a pretty typical 12 year old girl, only she has an autistic 8 year old brother.  She feels her family’s world revolves around him and she alternates between trying to protect him and wanting to get as far away from him as she can.  She writes “rules” for him in the back of her sketch pad.

“That’s where I keep all the rules I’m teaching David so if my ‘someday-he’ll-wake-up-a-regular-brother’ wish doesn’t ever come true, at least he’ll know how the world works…”

The author helps Catherine put words to her emotions through a new friend – Jason, a paraplegic the girl meets at her brother’s occupational therapy sessions.  Jason can’t talk and relies on his communication book – he taps at the words in his book to form sentences.  They meet when Catherine is busted trying to sketch him and he gets upset.  As they get to know each other, Catherine starts making illustrated words for his book so that they can talk to each other.  She begins using this as an outlet to share her feelings regarding life with her brother. 

Again… words escape me.  This book had me in tears last night. 

After an encounter with her brother and the neighborhood bully – in front of her new “popular” friend, no less – Catherine runs to her room and writes down many new words for Jason. “Murky” was the one that required the most explanation.  She explained that there’s a pond she and her friends like to visit, and the bottom is covered in mud, old leaves and pine needles.  She and her friends often dare each other to dive down to the bottom and bring back a handful of this murky mud and leaves as proof that they made it.  When she dives down, she says her foot sinks into the murky stuff at the bottom – up to her ankle – and just when she feels she’s almost out of breath and afraid the murkiness might not let her go this time, she rushes to the top and feels the exhilaration of fresh air.  She explains to Jason that sometimes with her brother, she feels like she won’t make it back up – she’ll be sucked down instead.

Jason responds by confessing that he sometimes wishes he was dead, which upsets her. He explains that he feels incomplete.  He dreams of running and asks her what that’s like.  After trying to explain it, she decides to take him for a run instead.  His mother is wary, but allows it.  She takes him outside in his wheelchair and runs as fast as she can, until she hits that runner’s high feeling.  Even bound to his chair, he feels it, too.

The author does a wonderful job of juxtaposition with Jason vs. Catherine’s brother David.  One has physical abilities, the other has mental ability.  Catherine battles with what matters more – her own feelings or the opinions of others.  In the end, she decides that her friendship with Jason and her love for her brother take precedence over what others might think or say.

I saw many similarities between Colin and the character David.  At this point, Ryan and Robbie don’t seem to ever be embarrassed by Colin, which is good.  I worry that won’t always be the case.  I hope we can raise them to understand that friendship and love are more important than what small-minded people think and say. 

One of the “Rules” Catherine made for David struck a chord with me:

Sometimes people laugh when they like you. But sometimes they laugh to hurt you.

I read this out loud to Rick.  He agreed that’s something we both worry about Colin facing as he gets older.  We have zero tolerance for bullying in our house – from anyone – but what can you do to protect your kids outside the home? 

Colin and Ryan are in the same grade.  I hate to put something so heavy on a 7 year old’s shoulders, but I hope Ryan will always try to protect his brother.  I know it won’t always be easy.  I hope we can raise Robbie and Ryan to understand that it’s never okay to make fun of someone for being different – that standing up for the people you love is more important than following the crowd.

“One day”

Colin makes a lot of requests.

He could put the demands of celebrities to shame, if given the chance.  He always wants more.  He’s not ungrateful – not in the typical sense of the word.  He just always wants to know what’s next.  And if something’s good, of course he wants more!  It’s a natural impulse.  Most of us are just raised that it’s impolite to ask for more – you should just say “Thank you.”  We’re trying to help Colin with this, too, of course – it makes for less awkward social situations – but it’s a bit of an uphill battle.  On the best days, we might get the oh-so-polite, “Thank you for frozen yogurt – can I taste yours?”  Or a thank you followed by, “Can I have the last bite?”  (What he really means is “can I have one last bite ” – typically the “last bite” he’s requesting doesn’t exist because it’s all gone!)

You could tell him we’re going to Disney World, and the minute you arrive, he’d ask if he’s going to get to go to Sea World next (hypothetically – not sure he knows either place exists!).  If you said no, he’d have a meltdown.  This can be really frustrating for parents trying to give their kids everything they can.  We’re not wealthy, but we try to make sure our kids have fun.  Whether it’s a trip to the park (free!) or finding discounted tickets to the zoo, kids’ museum, etc – we try to get out and do a little something fun at least once every weekend.  When you walk into a fun place that set you back a bit and the first thing your son does is ask for something better, it can really be a blow to the ol’ ego.

And “No” can set him back or throw him completely off into a tailspin, depending on the time of day, tiredness, and so on.

Colin has come up with an interesting alternative to “No.”

When you say, “No,” he often counters with, “One day? We can go there one day?”

“One day” brings hope and allows daydreams.  “One day” doesn’t let him down the way “No” does.  “Maybe” doesn’t even hold the same power.  If it’s not “Yes” then it has to be, “Yes, one day.” 

Some days I envy his optimism. I need to stop thinking that I’ll “never” do certain things and tell myself that “one day” I will.