May angst

Every year for as long as I can remember, May has been a difficult month for me.  This year it seems to be hitting me particularly hard.  Even when I was a little girl and unable to identify the problem, I was always just more emotional in May.  You see, my birthday is in May.  And this year I turn 40.

40.  What does that mean.  My walk here on Earth is probably halfway done.  (Genetically speaking, my family doesn’t hit 80 gracefully).  I could very well have more years behind me than ahead of me and I feel I haven’t accomplished half of what I set out to do with my life.  I’m easily distracted and love detours!  Most of it’s been great.  Some of it I could have done without.  But it’s all been part of this amazing, meandering journey!

This journey has taken me from the pits of Texas to the paradise of southern California, from the icescapes of Wisconsin to the countless waiting rooms that define the parent of a special needs child.  Possibly my single biggest skill is waiting.  As a military wife I waited for orders, for phone calls, for deployments to begin and end, for 72 hour shifts to end, for furniture to be moved in on Christmas Eve.  As a special needs parent I wait for reports from schools, reports from therapists and doctors, appointments, diagnoses, first steps (17 months old), first words (5 years old), end of a session so we can go.  I’m an expert at waiting.

But this year isn’t just about another birthday or marking the beginning of a new decade.  No, for me this year marks the beginning of a new chapter in my life.  I haven’t told many people this yet but for those who have heard, or suspected, it’s true.  Jeff and I have reached a point where it is time for us to travel independently.  There are many reasons; however, what truly matters is we are and want to remain great friends, even if being married is no longer right for us.

So here on the cusp of my 40th birthday I find myself starting over.  Not in the same way we all do every year but as an almost-divorced mother of two, a teenaged boy with Asperger’s and my little girl who still needs so much help.  Now is the time for me to stop waiting.  No more bi-annual moves, no more waiting for orders. There may be more diagnoses coming with my Rileybug but PT, OT, speech, behavioral analysis and regular therapy are already set up.

Please forgive me if I seem a tad more emotionally volatile than usual over the next few weeks.  I am OK, just adjusting to a lot of changes.  But change isn’t a bad thing!  It can be scary but who wants to live in a world full of caterpillars with no butterflies?  Soon I’ll emerge from this chrysalis and spread my wings!  I’m not asking for an easy transition, just a worthwhile one 🙂

Here we go again

Recently I became concerned that Riley needed more therapeutic services than she had been receiving.  So I took her in for evaluations and I was right.  We’re in the process of setting up OT, PT, speech, behavioral analysis, and psychological therapy.  In fact, I’m even taking her to see her pediatrician soon because the PT noticed a problem that I hadn’t thought about in years.  She has this thing with her right foot.  It never did point the right way but her previous doctors said not to worry about it.  Of course, they also didn’t think it was unusual for a 4 year old to be nonverbal.

Why is it so hard for me to push for what I know is right?  I knew 3 years before her doctors did that she was developmentally delayed.  I knew 19 years before I had an MRI that something in my arm tore.  Turns out it was the TFCC tendon.  I know when I’m right and I’m always validated eventually.  So why do I listen to “professionals” or anyone else when they brush me aside?  Why am I so willing to abdicate my responsibility to myself and my family just because someone else offered an easier answer even though I know they’re wrong?  What am I scared of?  Being right?

My intuition is good.  It’s almost never let me down.  People, on the other hand, all too often do.  Yet it’s easier for me to trust them than myself.  It absolutely baffles me that I let that happen so often!  I guess it’s a confidence issue.  I really need to work on that!  Especially where it comes to confronting professionals or people whose feelings might be hurt.  It’s nothing personal!  I just need to look out for my own health and my kids before I worry about anyone else’s feelings.  It’s really not so wrong to push for additional testing or a second opinion or whatever else we need and the sooner I deal with that, the sooner I can get our acts together!

It’s a SPECTRUM, dammit!

When we were trying to find out why Riley wasn’t talking at 4 years old and first started learning about autism, I became painfully aware of the stereotypes that exist around the condition.  Some comments came from people whose entire exposure to autism came from “Rainman”.  “Duh, does she count toothpicks? hur hur”, I heard a couple of times.  Other comments came from people whose exposure to autism was purely academic.  “That’s not autistic behavior,” said the well-meaning relative.  Then there’s the comments from the parents of profoundly disabled children.  “If you think autism is anything but a curse and a nightmare and if you get to sleep and don’t spend every minute of every day fighting for services or education or insurance, then your child doesn’t have autism.”

To ALL of these people I would just like to say, ASD stands for “Autism Spectrum Disorder”.  Let’s examine this name.  What does “spectrum” mean?  http://www.merriam-webster.com/dictionary/spectrum  Section 2A defines “spectrum” as “a continuous sequence or range”.  It does NOT say “all the same” or “a lot of things that are just alike”.  Every individual who lives with autism is just that: an individual!  Having a different experience from your experience (or from your stereotype) does not invalidate our experience!  My daughter wants to play with other kids and wants to play games.  She tries but the poor thing just doesn’t understand how to do it.  She’s pretty good at taking turns now but if the rules are more involved or there are multiple steps in each move, well, I’m not sure that we’ve ever finished a game when trying to stick to the rule book 🙂

I’d also like to point out that nonverbal children are often spoken about as if they aren’t there.  They seem as though they are not listening and they don’t respond so they’re clueless, right?  WRONG!!!!  They’ve grown up absorbing language and do understand!  They also have feelings that can be hurt!  Tyler was not speech delayed at all.  He would jump in to our conversations even when he was listening to music through headphones and playing with his Gameboy.  He appeared to be tuned in to something else but was also very much aware of what we were talking about.  Riley, on the other hand, did not start speaking until she was 5.  She had a completely zoned out, zombie-fied look about her most of the time and she didn’t respond so we were guilty of speaking as though she wasn’t there.  I feel terrible about it now!  I wish I had realized earlier that lack of speech does not equate to lack of knowing!

I guess what I’d most like to say is that we’d all get along so much better if we treated each other with respect.  Whether or not your child can communicate their feelings, treat them as though their feelings matter.  Whether or not somebody else’s experience matches with what you think it should be, respect that there are things you don’t know about their life.  Even if someone’s life seems less “nightmare-ish” compared to your own, don’t be angry with them.  No, it’s probably not fair but life isn’t about being fair.  I’m not really sure what life IS about but it sure the heck ain’t about being fair!  And if for whatever reason you think somebody shouldn’t use the word “autism”, remember that they probably didn’t decide on their own to describe their child that way.  They probably have at least one professional giving them the diagnosis and quite likely a team of therapists, teachers, and aides working with the family.  And if you really feel the need to say, “But PDD and Asperger’s aren’t REALLY autism” then please consider biting your tongue and being smug later.  It is a spectrum disorder that includes many individuals and, like all individuals, each is unique and wonderful and has their diagnosis for a reason, whether it’s visible to you or not!

 

Emotional days

My life is good.  It really is.  I have a wonderful family, 2 great kids, a home, food, basically everything I need.  But every once in a while I’ll see something and it’ll strike me “damn, that would have been nice.”  Usually it’s a vacation or something someone had and it’s just a fleeting thought that’s gone almost as quickly as it popped up.

Sometimes, though, I’ll see very young children (usually 6 or younger) doing something… singing, dancing, talking, having fun, being social basically… and remember the things I was excited about when I first had Riley.  All the experiences we didn’t get together.

Today is one of those days.  I was watching tv and saw 2 little girls just being chatty and excited and having a great time and suddenly I just burst into tears.   So sometimes I have to let myself go.  I have to give myself freedom to miss what I had anticipated but never got.

Then, after a while, I can refocus on the amazing girl I did get.  Her experiences as a little girl are different but no less valid.   It’s ok that we spent more time in speech and OT than … heck, I don’t even know what we would have done instead!  Isn’t that funny?  I can’t think of anything to put there 🙂

Life is hard enough without having autism and I am sad for her that her life has to be that much harder.  I’ll do anything I can to help her develop to her fullest.  I hope she can live independently one day.  I don’t know how independent she’ll be.  But she’s only 9.  No hurry 🙂  I’ve a feeling it wouldn’t help her any to let her know I have these thoughts so I hope it only happens while she’s at school and I can be ready to celebrate her day with her when she gets home.  She could be having “the best day ever” for all I know and I certainly don’t want to be the one to spoil it!

I cherish every moment I spend with my baby girl, even when she’s high maintenance.  She’s wonderful and I want to help her grow and develop but I wouldn’t want her to change for anything!

Are we sure?

According to Riley, every day that anything good happens is the best day ever.

According to Riley, every person who tries their best deserves to be cheered on and applauded.

According to some of Riley’s classmates, I paid the music teacher to let her in the talent show.

According to some of Riley’s classmates, they wanted to go to the talent show just to laugh at her when they wouldn’t even try to perform.

I thought she was the disabled one who wasn’t supposed to be good at interpersonal relationships.

I guess it’s true but I think it’s not because of her.  Are we sure she’s the disabled one?

Bullying or playing?

This morning while waiting for the school bus I saw a boy hit Riley in the chest with his backpack.  My “listen to me NOW” voice came out and all activity ceased for a few moments.  I proceeded to call the school and then informed the boy’s family that he hit a younger, disabled girl and that I thought that behavior was unacceptable.

The vice principal called me back to say that he talked to Riley, the boy who hit her, and our neighbor and that both boys claimed they were playing a game where you stop the mummy by hitting them with your backpack.  He said that he told the children that it’s not a good game and they should behave while waiting for the bus.  I guess that’s the best they can do considering it was off school property and they didn’t witness anything.

After school today Riley told me that she was trying to protect her friend because she thought the other boy was trying to hurt him and that’s when he swung at her.  She said she didn’t know it was a game.  We discussed how hitting is wrong and never a game and if saying “stop!” doesn’t work to go get an adult.  But several things concern me here.

Would she try to intervene if she thought someone was hurting another child?  I tried to tell her not to do that, scream and get an adult.  She responded that she’s brave enough.  She doesn’t understand that it’s not about being brave, it’s about being smart.  That’s kind of scary!

What scares me the most is what can people do and tell her it’s all a game?  She could get seriously hurt or in trouble and never even realize that it’s NOT a game!  I have to convince her that name-calling, hitting, other forms of bullying, and “bad touching” are not games and are never okay under any circumstances!

But how can I teach her the difference between “play” and “bullying”?  It’s much easier to say “hitting is bad” or “if your swimsuit covers it, NOBODY touches it!” than it is to recognize and respond appropriately while in the moment.  Especially when you already process things a little slower anyway.

I’m going to bring this up with her teachers on Monday but I’m soliciting advice here.  How can I protect my daughter when I can’t be there with her?  How can I prepare her to recognize bad situations and get out of them and get help?  What if an adult betrays her rather than a child?  How can I know she’ll come to me if something bad happens?  I’m so not ready for this…

Ingenuity at its Riley-est!

Today Riley brought home one of those stupid little tile puzzles.  You know the kind where you slide the tiles around the board until you get them all in place and see the picture.  I told her that I find that particular type of toy to be incredibly frustrating and that I would not do it for her.

In her ever-encouraging way she told me that I shouldn’t get frustrated.  I should just try and try until I get it.  That’s what she was going to do, after all!  I said I hoped she had fun with it and went on with my business.

A few minutes later she sounded upset so I checked on her and one of the tiles had popped out and she couldn’t get it back in.  So I slid it back in for her.  About 10 minutes later I checked on her again and she had all the tiles out and was trying to arrange them 🙂

Working together we managed it in just a couple of minutes.  But then she had to put them back in the panel!  Another few minutes passed and then she was just crying.  I looked over and the tiles were all over the place and things had apparently gone very, very wrong.

She gave me all the pieces saying “Maybe we should give this to someone who wants it more than I do.”  I informed her that nobody wants it.  It’s a frustrating toy and almost everyone cries after a few minutes.

So what did we get from this catastrophe?  She learned that sometimes the frustration just isn’t worth the reward of sticking to it (or maybe she didn’t, hard to say).  I learned that I CAN fix those stupid little tile puzzles… if I use a little Riley-type ingenuity rather than try to do it the “right” way 😉

I didn’t understand my job!

16 years ago this weekend I had my son.  I thought it was my job to keep him clean, healthy, fed, safe, and entertained.  Eight and a half years ago I had my daughter and still thought much the same.  The journey I’ve been on with her has shown me how very, very wrong I was!

It wasn’t my job to do these things for them!  It was my job to help them learn to do these things for themselves!  I’ve never more wished I could get a message back to my younger self.

My kids are awesome.  They can be mouthy and have an attitude but generally they are fairly well behaved so I’ve never had to do a lot of discipline.  But discipline is only part of my job.  Teaching them life skills is something that I’m sad to say I’ve neglected.

I’m sure I have time to teach Riley what she needs to know.  She may (or may not) always need a daily assistant but I believe she can be basically independent and put things like “pay the bills” and “take out the garbage” successfully into a routine.

On the other hand, I have a year and a half left with Tyler.  He’s a teenager with Asperger’s Syndrome and he’s gifted.  Not the funnest combination for a parent!  He knows he’s smarter than me so why should he have to listen to me?  Oh, it’s true.  He’s never had an IQ test but he does have an annoying habit of getting perfect scores on standardized tests.

It could be a serious challenge getting through to him in time.  I may not succeed.  I may have let him skate by so long that he’ll have to crash & burn before he can start to learn.   But I do know he’s going to be an amazing man one day.  And the sooner the better!

To dance or not to dance

For the past several months Riley has been in dance classes.  It’s been awful!  She needs 20 minutes to get her socks and shoes on.  By the time the first shoe is finally on, the 2nd sock has fallen off and gotten lost.  By the time we find the missing sock, the first shoe has gone AWOL.  Then the whole 3 minutes we’re in the car she’s complaining about being bored and wanting to be home and she’s tired and hungry.  Then we get to the school and when class starts… well… her teacher loves “her energy and enthusiasm.”  She spends more time running in circles until she falls down than actually practicing the routine.

Maybe dance isn’t the right activity.  I was absolutely positive that I needed to pull her out of dance after this season is over.  But then she had her first recital.  There was a tiny bit of stage fright while she was waiting but once she got on stage… How did she manage to learn the routine while she was running in circles???  She was amazing!  She completely nailed it!  I guess it soaked in just by being at practice every week but she knows that dance and she might forever start doing it every time she hears “Frosty the Snowman”.  She even hammed it up a bit and played to the crowd 🙂

Maybe she really does like dance.  Now I’m wondering if the problem might be that it’s a special needs dance class.  Would she possibly enjoy a more structured “typical” class more?  The special needs class is wonderful.  The teacher is super and I’m so grateful to her and the academy offering a class for our less-coordinated kiddos.  I’ll happily give anyone the information on the class if they’re interested!  But now I’m wondering if it’s the right class for my RileyBug.  Maybe she needs a larger class (there are only 2 students left now and the other is a teenage boy).  Or maybe more structure.

I sure wish it was easier to know what the right thing for her is.  So is it to dance or not to dance?  And if it’s to dance, is it stay with the special needs class or give her a chance in a typical class?  She is decidedly special needs but she surprises me every day with something.  I so wish I could know what was really going on inside her, what she’s feeling and thinking about something.  But, alas, she doesn’t know how to tell me.  She’s smart.  She’s funny.  She’s sweet.  She’s often polite.  Her teachers even tell me that she stands up for kids who are being picked on and helps the students with less verbal skills communicate (she didn’t start talking til she was 5!).  But does she enjoy dance enough to keep up the effort and expense?  Complicated little Bugaboo just isn’t that easy to read 🙂

Wow! So sorry for the unscheduled break! I got a bit under the weather and apparently it was worse than I realized. I’ve pretty much slept for most of the month and I may need a 2nd round of antibiotics but I’m finally feeling like I’m coming back to life! I didn’t even miss writing until yesterday. That should have been a much bigger hint to me than it was. Writing is like cooking. I may not always do it well but I always have to do it anyway! I’ve got a couple of essay topics germinating in my wee little brain so hopefully I can figure out how to write the one that I need the most.  And it is such an important topic.  You see, the other day my Riley asked me what autism is. I didn’t have an answer for her.  She deserves that answer.  It has completely impacted every area of her sweet little life and is such a big part of who I love and I can’t tell her what it is.  It’s honestly something I’ve wondered for a long time… what will I say when she asks… but now it’s happened.  I’ve always heard that when a child asks a question that they’re ready for the answer.  Sure would be nice if I knew how to answer!  Anyway, I will be back tomorrow!  And hopefully with an answer!  Maybe I can dream it up tonight.  Hey, I’ve had stranger dreams than that 😉