You Took Your Special Needs Kids Where? Part one

So for spring break this year my husband and I took our special needs kids to Peru.  Yes you read that right.  We took a 13 year old with ADHD and Anxiety problems and a 7 year old with FASD to a third world country for 10 days.  Are we crazy? (Um we’re parents – isn't that kind of a given?)  Actually we put a lot of time, planning, and preparation into making this trip as special needs friendly a trip as we could. 

We chose Peru because we happen to have friends that live there.  And they own a hotel.  My kids both know these people and are comfortable with them.  They know my kids and their quirks.  So although they will be dealing with a lot of unfamiliar things  - they will have some familiar too.  Our friends sent us photos of the hotel and our room in advance for us to use to prepare both kids.

Also we brought along plenty of back up.   Nana, two of their Aunts and an Uncle traveled with us and their other Nana, another Uncle and a family friend met us there.  (No we didn't pay for all of this – we are crazy not rich!!  It was along the lines of a family vacation with everyone who could make it.)  So we had lots of extra eyes, arms, and legs on hand.  I mean the adults outnumbered the  kids 9 to 2 so I figured if you throw in our friends in Peru as well  we should at least be able keep up with them.

Was it a very ambitious undertaking?  Sure, but like I've said before we want our kids to live full lives.  They are smart, interesting and active kids.  So, we went.  And with all the prep work and built in accommodations what could go wrong? 

Here’s a little overview of just the highlights. (of the trip - not just what could go wrong.  Although of course a few things had to right?)

3/22/14 D (for departure day) minus 6.   I begin packing.  Really doesn’t everyone start packing almost a week before they depart and keep a spreadsheet of items to pack and which goes in which bag and in what order?  Seriously, the key to surviving travel with my kids is having the right clothes, meds, comfort items, snacks and distractions on hand and easily accessible when needed. 

3/27/14 D Minus 1 -  If it’s not packed it’s not going.  

  

I’m in Little Man’s room checking over his carry on one last time when it occurs to me I have not seen the hamster stir in the cage in , hmm, how long HAS it been?  Oh crap, dead hamster!  Um, honey can you call your dad and ask him to come over after we leave and get rid of the dead hamster?  And maybe pick up a new one that looks kinda like this one please?  What?!? No I’m not telling the kids.  Do you really want to spend the next 18 hours traveling with the kids obsessing over the dead hamster? Husband makes the call.

We tell the kids the Hamster is just asleep.

 

3/28/14  D Day – we get everything loaded and on our way with no mishap – it’s an omen!

8 AM in the car on the way to the airport I realize sitting next to my children when they are over excited is like being in a cage with two Rhesus monkeys on crack. 

10:00 AM Arrival at airport and check in.  Flight delayed.  Feeling confident we can deal with this.

12:00 Flight still delayed.  Kids actually holding up well.  Initial over excitement past – cranky not here yet. We can cope.  Time to break into packed distractors. 

2:42 PM   Rebooking new flights since original cancelled.  Kids are getting crabby. Distractors not so distracting any more.  Taking lots of walks around the terminal.  

6:53 PM Finally boarding a plane.  Why did we think this was a good idea again?

10:49 PM  The airline personnel at JFK thought they were not going to issue us tickets for the connecting flight.  Ha – aimed the over tired children at them and we sailed through to the gate tickets in hand.

3/29/14 12:01 AM  Flight delayed again. Children rioting through empty airport doing drugged rhesus monkey impersonation again.

2:00 AM Its time to board.  Of course it is, because this happened like 2 seconds ago!

 

Image is a photo of my kids sleeping on the airport floor.

6:32 PM – We are here.  The rest of the travel was a blur – I can’t remember any of it.  No really.  The brain protects itself from traumatic events like that.  The hotel is lovely.  The weather is wonderful.  The kids are sleeping.  My enthusiasm for this vacation is returning.  The PISCO may be somewhat responsible for that..

image is the lovely courtyard garden at Casa de Avila

Comic Relief

Comic Relief

I've been so desperately earnest here recently I thought I should lighten up.  Someone in a Facebook support group I participate in was sharing an embarrassing moment.  I decided to chip in with one of mine as well.  It seems I don’t know how to do anything on a small scale so this is more than just a little embarrassing but here it goes.

First, I need to share some embarrassing background.  I used to take pole dancing lessons - you know back when my ass was skinny enough to haul up a pole. And yes once upon a time long, long ago it was that skinny.  And just in case anyone thinks this means I was less of a kick your ass feminist back then I was not - this was about feeling rock your world sexy for myself after my divorce. I even sent my ex a video of a routine to "Don't Cha".  You know the one that goes, don't cha wish your girlfriend looked like me. It really frosted his cookies.

So, back to my embarrassment.  I was getting ready one morning for our very last social worker’s visit.  We were completing our post placement report. My “gear” from the pole dancing class was in a bag in the back of the bedroom closet. (Do NOT ask why I still had it - that is just TMI - we are not going there) Anyway, I was running around like a loon trying to make sure the house was clean enough to perform surgery on the bathroom floor without antiseptic and my two and a half year old son was playing quietly in his room just across the hall from me. I thought.

When the doorbell rang I went rushing to open it lest a millisecond delay reflect poorly in the final report.   The social worker steps in and suddenly there is my son coming down the hall with a red silk thong around his neck, a tasseled pasty stuck to his cheek trailing a red and black feathered boa.  After a single stunned heart beat I turned to the social worker and said, “Sorry - we were celebrating his home coming and the strippers were running late.”  Thank GOD she had a sense of humor!!  Either that or she could tell I just wanted to die and took pity on me. Or who knows maybe she was blinded by the shine on the bathroom floor and didn't get a good look at him before I scooped him up and went to destripper him.  (These days I'd just tell her that OT, PT, and Speech are f***ing expensive so I do what I have to.  Of course, these days no one would ever believe anyone would pay to see me in a thong and pasties.)

In case anyone was wondering, the possible location of the only remaining copy of the alleged video is highly confidential. (My ex's girlfriend thoughtfully returned the copy I sent him burned to a crisp.)  I like to consider that a compliment on how hot I was.

OK – When is she going to be funny?

Can I confess that just two days into restarting this blog – again – I am already feeling pressured.  Not by you guys, you haven’t said a word.  (And yeah, about that, I really do better with some interaction folks, I mean it’s not like you HAVE to comment or anything but it’s easier to maintain the energy to keep going when you know someone is out there.  Just sayin’)   

But I feel pressured by myself.  I have perfectionist issues.  I think I do a decent job of not projecting them onto my kids but I self-flagellate with them ALL.THE.TIME.  (I know – TMI, right?)  The thing is I still hurt my kids with that perfectionism even if I only turn it on myself.  It’s what makes me hyper and stressed and leads ultimately to me going all psycho mama.   So I’m working on it. 

That’s one of the things they don’t tell you about in the mom handbook – which I never got my damn copy of by the way - that you have to work out your own crap if you don’t want to give your kids the same crap to deal with.* Maybe they left it out because they figured it was kind of obvious but in my opinion it’s of often the obvious stuff we over look.  And besides, even if you reason out on your own things like – I should not expect my kids to be perfect because it really screwed me up when my parents did that to me - A LOT of people are not going to get that by continuing to tote around your own baggage you will mess your kids up in the same damn way you don’t mean to. 

Because we are all going to give our kids some crap to deal with right?  But you’d at least like it to be different crap.  Hopefully a lighter load of it too right?  So I’m reminding myself once again – I don’t have to be perfect.  Not here, not at work, not at home.  My kids need to see (not just hear) that its ok to screw up sometimes, and it’s what you do after the screw up that matters more.  They need my example of being kind to myself so they can be kind to themselves.

There for I am giving myself permission to not have anything witty or interesting to say today.  Sucks for you guys but hey that’s life.   Hopefully, it will help me be better in the long run.

* How do I know it’s not in there if I don’t have the handbook you ask?  Well aren't you just a nosey little parker.  I do have friends you know.  Some of them are so together that it is obvious they got the book.  I ask them!!

Overthinking?

I have to travel for business next week.  I will be gone for a full 5 days and nights.  So far I have 6 pages of notes for my husband and mother in law who will be watching the children while I am gone. 

I bet you think I am over thinking this.  In some cases I may be.  For example - I have listed Bed Time is 8 PM.  Will it kill anyone if I didn't list that or if the kids are up later?  No, but it will make for disrupted schedule which leads to bad days at school and weeks of getting back on track.  However, we'd all survive. 

Some things, like what meds to give and when (especially with Little Man's chronic infection and his constipation problems even one missed dose is a big issue) and where the nebulizer is stored if our daughter has an asthma attack (rare these days but possible) are actually important.  You'd think my husband would know these things but you'd be wrong.

Other things are really for their benefit:
Do homework first before the ADHD meds wear off. (If they wait its gonna be a long miserable night!!) 
Two stories, 10 minutes rocking, and the weighted blanket with Little Man will save them a lot of sleep.

And some are clearly for my benefit:
Remember I am three hours behind you - if you call before 8 AM your time someone better be dying.
If someone is dying, or bleeding, or unconscious, or if you locked yourself out, or the car won't start, or you can't find something - call someone closer before you call me!  What am I going to do about it from here anyway?
And most important - if you even THINK one of the kids might need to go to the emergency room - TAKE THEM to the emergency room and don't call me until you are on the way. 

And yes, I know from experience I DO need to include those last three.

Mazel Tov

I need to start buying cigars.  Oh and call CNN.  Little Man is apparently pregnant.  He has been walking around for the last three days inviting everyone to feel the baby in his tummy.  I have no idea what had brought on this burst of fertility.  He does have 2 baby cousins but since they are 10 and 7 months old it seems a little late for that to be the driver.  I’m not aware of any other pregnant woman he may be seeing.  Since he seems to give birth on average twice a day I probably should also be stocking up on diapers and formula.  Unless he reverts to wanting me to breast feed all his babies.  When his cousins were first born that was his obsession.  He would walk up and shove stuffed animals down the front of my shirt because they were hungry.  As long as he doesn’t start that again I’m cool with all his offspring.  Hey – just think of the dependents I’ll have to claim on next year’s taxes!!

But seriously, the dysmaturity that comes along with FASD is not always a problem.  Sometimes, like Little Man’s latest pretend play, it is a delightfully funny surprise.  Sometimes it is piercingly sweet, like the way he still loves to rock and sing and cuddle every night before bed.  It can make my heart almost stutter in my chest when I hear him give a rolling belly laugh of the kind kids seem to lose somewhere between toddlerhood and school age.  And it swamps me in a tidal wave of love when he melts into my arms, tears clinging to his lashes, comforted just because Mama kissed it better.

I saw a rainbow on the way home from work the other night and it immediately brought to mind that trite old phrase – you can’t have rainbows without the rain.  As much as I hate the sticky sentimentality of clichés, I have to admit there is some tiny grain of real truth stuck in all that syrup.  I may mourn what Little Man could have been without the prenatal alcohol exposure but I love who he is now and FASD is a part of him.  I would not wish the pain and problems he will experience from this disability on anyone but I wouldn't change him either.  I will just celebrate every sweet, wild, sensitive, restless, frustrating, amazing bit of him just like I drank in the shimmering beauty of those surprise colors. 

Parenting Kids with FASD is like

Adrienne at https://www.facebook.com/fasdfamilies asked for folks to fill in that phrase.  Wow what a question!!!  I have been trying to work on a post about what it is like to be a caregiver for a child with FASD and not gotten very far.  I am usually pretty articulate.  I'm the person in meetings at work that tosses off an idea or a line and has others saying "slow down I want to use that."  But not when talking about this.

I wonder sometimes why that is.  Is it the sheer exhaustion that ties my tongue in knots, or how fervently I care about it all, or some days I secretly wonder if FASD isn't contagious.  I know my though processing, my memory, my impulse control are all so much worse some days than others.   Taking a step back from trying to explain it all and just finish the sentence I came up with these:

Parenting Kids with FASD is like...

Swimming in a blender.

Riding a roller coaster that never ends.

Being the only sane person locked in an asylum with a lunatic in charge.

Jogging through knee deep peanut butter.

Rollerskating down (and back up) the hills of San Francisco during an ice storm.

Training cats.

Trying to learn how to land a plane before the fuel runs out, from someone who only speaks Mandarin with controls all labeled in Cyrillic. 

Living the very best and the very worst day of your life at exactly the same time – over and over again - every day.

I'm still not satisfied that I've nailed it but there you go - it gives you an idea.