Category Archives: Autism

Some days just aren’t worth getting out of bed for

I’m so over this day.  I was over this day hours ago.

First, I slept really late.  OK, I had no place to be this morning so it wasn’t a big deal but it still through me off my morning.  Then my elbow and knee have been hurting all day as though I twisted them in my sleep.  And the first thing I see on my news source is Carrie Fisher died.

After lunch I went to my room and what to my wondering eye should appear but three (3 — THREE!) massive hairballs yacked up on my bed.  Merry Christmas, love CDK!

I took Riley to see a movie.  Well, that was the plan anyway.  We went to the theater and it was crazy busy!  I haven’t seen that theater so busy in years!  So we wait in line, get our tickets, then go to the massively busy concession stand.  Just when it was time for the lady in front of me to order, the cash register broke and it took them several minutes to get the register next to it prepared.  There was also no carbonation for the drink machines.  When Riley went to fill her cup with a non-carbonated beverage, we got separated in the crowd.  It took me a good 10 minutes to find her!  I was about to freak out and start yelling for her!  I asked the ticket-takers at the door and one of them had seen a girl in a blue coat with hood sitting outside theater 2.  The same movie was playing there but it started half an hour earlier.  Our movie was in theater 16.  I find her sitting on the floor by the doors completely in tears.  I tried to talk her down so we could continue on to our movie but she was close to full autistic meltdown mode.  Fortunately I was able to get the tickets refunded and we left.

We stopped at the Dollar Tree on our way home and I got AA batteries for the new clock I got for Christmas and a frame for the picture Riley drew me for Christmas.  Once home, I fix up the clock and hang it on the hook, replacing my Grandmother’s Kinkade print.  Two minutes later it falls and the frame broke.  My dad was trying to adjust the frame to glue it back on when the whole thing shattered and the glass facing broke.  So now I have a plain circle with Roman numerals for a clock.  Sigh.

Then I put my picture in the frame and left it sitting on the coffee table to take to my room later.  Glad (CoDependent Kitty) curled up on it.  When he got up Fursley decided to give it a try.  Fursley is nearly 10 pounds heavier.  He broke the glass.

Seriously.  What?  Fine.  Whatever.  I got myself some chocolate milk (rice milk, of course, damn food “sensitivities”).  And ended up spilling it all over my favorite pajama pants, my shirt from Riley’s school, and the chair I was sitting in.

I’m really just so over this day.  Seriously.  Maybe someone put a curse on my day.  Maybe it’s because today is December 27.  Maybe I was just due for a rotten day.  All I know is I’m done!  I’m going to get ready for bed now.  I haven’t put the mattress protector (yes, the cat yack soaked all the way through) or sheets back on my bed yet but right now I don’t care!  I need to put this day behind me and try again tomorrow!

peacock-card

What is, what was, what could be

Saturday afternoon I received some bad news.  It’s not that it was unexpected news.  I knew it could happen this early.  But I hadn’t thought about it in a while and thought I had a few more months.  When I learned the extra time was not to be, I had to move forward with planning for this new circumstance.

Unfortunately I don’t handle bad news well.  It’s Tuesday evening now and I’ve had this knot in my shoulder since Sunday morning!  But I’m finally moving forward with some alternate plans.  Not enough yet but it’s a start!  And I have a month to work things out.

Saturday was also closing night of Tyler’s play!  I only got to see 2 shows but it was opening night and closing night so those are the 2 I would have chosen.  He had a great time and he is sad it’s over but I know he’s happy, too.  He’s missed a lot of sleep the last couple of months!  But the next project will come up very soon (he’s involved with 2 local theaters and the new drama program at his high school… it won’t be long!) and once again he will never be home and will wish he could take a nap.

Riley is doing awesome!  Having three part time teachers rather than 1 full time teacher doesn’t seem to be bothering her at all.  Plus she’s in practice for the Special Olympics Equestrian event.  We were there earlier this evening and they finally took the lead rope off the horse!  She was riding independently in the spring but her new coach had never worked with her before.  The show is in 4 weeks and we’re already excited!

As for me, the word is stress!  Yesterday Riley had therapy so I spent 3 hours in the waiting room!  The last hour was pretty nice but before then, ugh!  I really wanted to suggest to that other mom that her verbal reprimands were going unheeded and perhaps he would respond better to distraction or some other option but decided to just shut up with the unsolicited advice.  Because, seriously, almost nobody wants to hear it!

I’m trying to take my stress out on planning for the future, cleaning up my home, and crafting.  I did have a bag of M&Ms yesterday.  Chocolate just seemed the thing to do at the time!  But I kicked my butt this morning during my workout 🙂  I was also hoping a good workout would help this painful knot in my shoulder.  I guess it helped some.  It’s gone from knotted kite string to knotted shoe string so that’s something!

Maybe this week I’ll share a craft I’ve been working on.  But then the question becomes, which one!  Greeting card?  Clock?  Jewelry?  Bookmark?  Decisions, decisions, so many decisions!

So what is?  Change!  Always change!  Ready or not, something WILL change!  What was?  Tyler’s play.  My procrastination.  The lead rope from Riley’s horse!  What could be?  The beautiful (yet terrifying) thing is I have no idea!

IN MY EXPERIENCE having a child with autism is…

IN MY EXPERIENCE having a child with autism is frustrating.  Why doesn’t she understand me?  Why won’t he listen?  Just tie your own shoes already!  Therapy.  Testing.  IEPs.  School therapy.  School testing.  More meetings.  She threw a fit at lunch today and we don’t know why.  Was the cheese melty or the vegetables cooked?  For a long time she refused to eat anything brown.  He won’t eat a sandwich with condiments on it or anything with mayo.

IN MY EXPERIENCE having a child with autism is stressful.  She forgets she needs to be quiet right now.  He picks on her to get a reaction.  She reacts.  Violently.  He thinks he’s smarter than everyone else.  She can say “4 times 8 is 32” twenty times in a row and forget it on the 21st.  The restaurant made the food wrong and meltdown is imminent if they don’t eat soon!  I just want to scream!

IN MY EXPERIENCE having a child with autism is sad.  I didn’t get the experiences I expected to have with my little girl.  There are things that she just wasn’t/isn’t/may never be able to do.  Other experiences have filled in for what I thought I wanted.

IN MY EXPERIENCE having a child with autism is full of questions ranging from guilt-induced to unanswerable.  What did I do wrong?  Nothing.  That’s counter-productive, harmful thinking brought about by grief and guilt.  When will she (fill in the blank)?  In her own time… or not.  What will happen when she’s 18?  Will she be able to work?  Will she be able to live independently or will she always need a caretaker?  Will she ever be able to have a family of her own?  Too many questions!

IN MY EXPERIENCE having a child with autism is a major learning experience!  I have learned patience.  Now I can wait for her to finish her own sentences and tie her own shoes.  I can listen to them fight and not intervene until it’s obvious neither of them can change the course.  I can scrape a perfectly delicious meal into the garbage and make her a bowl of ramen noodles (OK, not often but as long as she’s TRIED it!).  I can sit through a public melt-down and smile and wave at anyone who stares.  I can explain to anyone who asks what set her off (usually, I know the kid pretty well now).  I can sit for hours at a time in waiting rooms with other parents and a magazine to keep me company.

IN MY EXPERIENCE having a child with autism is joyous!  It took her a year to potty train.  Her first steps were at 17 months.  She was pre-verbal until she was five.  Learned to ride her bike at 8.  Brought home a party invitation from a classmate… and actually wanted to go!  She used a full sentence to state a request instead of a single word or, worse yet, a gesture.  Those early years where other parents have a milestone seemingly every day are filled with questions and why-nots but we get many of the same milestones just spread out over a longer time frame.  Making them much more precious and joyous when they do occur.  We also count every little accomplishment as a milestone where as many parents may overlook them.

IN MY EXPERIENCE having a child with autism is full of every kind of loving imaginable.  Giggles, hugs, cuddles, cats, horses, smiles, running across a store with a big smile to a certain toy then running back screaming “MOOOMMMMMMM!” as though she hasn’t seen me in a year, storytime, throw a blanket on her head, fits, meltdowns, emotional upheaval, major mood swings, roller coaster, my worst day is your Tuesday, your worst day is my Thursday.

I want her to grow and to learn.  To have better control over certain behaviors that make her a bully target.  But never to change.  She is sweet, loving, caring.  Strange animals come up to her so she’ll pet them.  Horses, cats, even chickens.  She doesn’t like dogs much, though.  They’re too loud and bouncy.

I know other families have a much harder path than I do and I know there are parents who would change their disabled kids in a heartbeat if they could.  If I were in a harder situation, I may want to, too.  But that is not my path.  My path is a 16 year old with Asperger’s Syndrom and a 9 year old with PDD-NOS/autism.  And although some days seem as though bedtime will never come, my life is an adventure.  An adventure that my kids make well worth any frustration or stress or headaches.  And I love them for the perfectly imperfect, amazingly amazing individuals they are!

And it begins…

That nightmare that made 3rd grade so difficult for Riley and me started again today.  Just a week into the school year and she’s already whining and complaining when it’s time to do homework.  Everything else is great.  She gets up on her own.  Gets dressed without a fight (with a bra, even).  Bounces happily to the bus.  Even bedtime has minimal fuss.  But homework… What is it about homework?

There is something about having to do any sort of homework that just turns her into a whining, procrastinating, complaining diva.  You know what her homework was tonight?  She had to spend 10 minutes reading her library book (about cats, as they often are) and practice multiples of 4 for the quiz tomorrow.  That’s it.  It really didn’t require the 10 minutes of whining that preceded the 15 minutes of actual work.  Or maybe it did.  What do I know?

Starting tomorrow she will begin homework at 330.  That’s right after snack time and only 30-45 minutes after arriving home.  Maybe doing it earlier means it won’t interrupt the flow of her evening.  If that’s what causes the mood swing.

She also has an absolute obsession with going into a cartoon world or having cartoon characters come visit her.  Listening to her go on about what it would be like if she found a way into Ninjago City gets a tad tedious after a few hours.  She was working on a great little story about the Pound Puppies going to Ponyville.  I was really enjoying that one!  But she hasn’t worked on it in a few days.  Maybe tomorrow I’ll find her pages and ask her to keep going.  She’s so creative!

Around here I really never know what tomorrow will bring.  But, truthfully?  I’m okay with that 🙂  Each day is a new adventure and most of them are quite enjoyable lately!

The best laid plans…

So last night I was all hyped about the potential I had to get so much done today.  Yeah, didn’t happen.

Maybe because I went into overdrive yesterday.  Maybe because I didn’t take my Adderal this morning.  Maybe it’s stress.  I don’t know.  But I pretty much shut down this morning.  After Riley got on the bus I came home and passed out.  Then when I finally woke up, I was hungry all day!  To the point where I was just snacking all day.  Bananas, apples, no idea how many grapes, Special K baked chips with sea salt (I love those…).  Not exactly any diet busters in the mix but just a lot of it!

I tried to work on a braided fabric necklace I saw on Pinterest but just wasn’t feeling it.  I did get quite a bit of it so I can finish it tomorrow, I’m sure.  I definitely want to work on some greeting cards this week, too.  It’s been a while since I’ve done any paper crafting.

And since today was Tuesday, Riley had Special Olympics equestrian training!  There’s nothing she loves more than riding horses 🙂  Last year they put her in an independent category even though she’d never ridden independently.  This year, she’s ready for it!  I’m so excited for her!  There is one thing she loves almost as much as horses.  Getting trophies.  Horse trophies are just so awesome!  And of course there is always at least one cat at the arena.  Today there were two!  Eek!  Excitement overload!  Even at home with her cat that she’s had for 2-3 years some days it’s every five minutes I hear, “Mom, did you know there’s a cat in the house?”  Or “Do not move a muscle.  It’s sitting right on you!”  She is truly adorable!  Until she does it 50 times in an hour, then it can be kind of annoying.

But I’m going to bed a few minutes earlier tonight.  I want to set myself up for another day like Monday instead of like today!  I’m really not annoyed or frustrated or kicking myself about today.  It’s not all or nothing for me.  So long as my scale keeps going down instead of up, last week’s skinny jeans are next week’s fat jeans, and I have relatively healthy food for myself and my kids, I feel good about it.  I need more projects completed if I’m going to do the craft fair coming up in two months but I have a ton of excellent ideas and it’s all happening slowly but surely!  I’m in a good place in life right now and I’m just going to enjoy each day and it’s challenges and rewards one at a time 🙂

Beautiful Weekend!

It really was a great weekend!  On Friday, Riley spent the night at my parents’ house and I got to see the opening night of Tyler’s play!  He’s in a local theater production of Oliver!  He doesn’t have a major role in this one but he does get a lot of on-stage time.  It’s very exciting.  They’ve been working very hard for about 2 months now and it’s worth it.  The production is excellent!

Mom told me that she’s seen some definite improvements in Riley’s behavior since the last time she stayed overnight.  Not that she misbehaves much but her other behaviors… not wanting to talk to them or look at them, that sort of thing.  I have noticed in the last week or 2 that she will actually talk to my dad some.  Talking to men is a challenge for her.  But honestly, I’m in no big hurry to change that!

Then there was today.  As far as I’m concerned, today was just about perfect, weather-wise.  Upper 70s, clear skies, not very humid, nice breeze.  It was pretty much the first day in a long while where I didn’t feel like I was going to melt, the humidity was overwhelming, or we needed a boat to get around.  Riley decided that we just HAD to go for a walk on such a beautiful day!  Have I mentioned recently how smart she is? 🙂  So we went up to the local playground to hang out for a few minutes before walking home.  She’s not really interested in the playground much these days but she does love to walk there and back.

Both Friday night and Saturday I stayed up well past midnight to talk to Tyler about the performance.  I’m used to being in bed at 1030!  But he’s excited and on a major adrenaline high after the show so what’s a mom to do?  What with that and overindulging on pasta this evening I am so sleepy!  I should crash before I start rambling.  Or is it too late already? 🙂

Meet the teachers

This evening was “parent orientation” at Riley’s school.  I find it helps me a lot to go to these things so I can get a feel for the classroom and the teachers and how things work.  Yikes, I’m glad I went this year!  I don’t know if it’s an experimental thing or a budget thing or what but her classroom has 4 teachers!  Two ladies take turns teaching math and science.  One is there on Mondays and Tuesdays.  The other on Thursdays and Fridays.  They alternate Wednesdays.  Then the kids go to another teacher for reading and language arts.  And, of course, our friend from last year, the special needs teacher, is staying with the class all day.

I expressed concerns to the teachers about Riley adjusting to the daily changes.  She hates having her routine disrupted.  Yesterday when she was getting ready for bed she was upset that we weren’t going to therapy today… it’s Thursday, that’s what we do!  But the one teacher will be there all day every day so that’ll provide her some of that consistency.  They suggested they could put a note on her desk every day to tell her who will be there the next day so she won’t be too surprised.

But I just never know with her.  I’ll think I have her figured out and then she has to change the rules.  Just this afternoon Little Miss “I hate music and melted cheese is gross” told me she wants to be in the school choir this year and then asked for Bagel Bites for dinner.  I felt like I’d dropped into an alternate reality!  Such a goof!  But while I was at the school I talked to the music teacher about her being in the choir and she said we should let her try.  If it doesn’t work out, she doesn’t have to go back.  Easy peasy, right?  I hope!

First day of school

What a successful first day!  Riley came in about 230 and seemed very excited about her day.  She didn’t say much, other than she brought me homework, but she was really happy.  It must have been a fun class 🙂  About an hour later Tyler came in.  I asked how his day was expecting a rather typical teenage grunt in response.  He gave me a very enthusiastic, “Yeah, it was really good!”  So, yay!  They won’t fight too hard tomorrow about going back again!

As for me?  Yeah, I had a pretty good first day of school, too.  I cleaned the refrigerator (mostly).  At least there’s no expired/bad food left in it and the main shelves are clean!  Worked on some crafts.  Did a couple things I’ve been putting off.  I hope tomorrow is just as productive!  Or even better!

Oh, but the excitement didn’t end when the kids got home!  No way!  Today was also the first day of training for the Special Olympics equestrian event!  Now THAT is amazing!  She hasn’t ridden in several months and she has a different instructor now so she had a leader and sidewalkers today.  It won’t be long before she’s independently riding like she was in the spring.  I’m so thrilled for her 😀

But for now, even though today was a really good day, I’m glad it’s coming to a close.  Because tomorrow is a brand new day with new adventures!  I’m excited to see what’s next!

WOW! Finally!

I seriously was starting to wonder if this summer was going to end!  But, finally! School starts in the morning!  My son is starting his senior year at high school and my girl is in fourth grade.

We didn’t do a whole lot this summer.  No big vacation or anything exciting.  But we did okay, I think.  Riley and I went to the pool a few times.  She loves swimming!  She’s not what one might call a “good” swimmer but she has fun and what else matters?  We went for some walks on days when it wasn’t blazing hot.  And every Thursday we spent the day at the therapy clinic for OT, PT, speech, and therapy.

Tyler spent most of the summer doing teenage stuff and landed a part in a local production of Oliver!  He’s so excited!  The play opens this coming weekend.  It’s been a great experience for him.  He really had to break out of his comfort zone to go to a new theater to audition and it paid off for him!

As for me, I’ve spent a lot of time working on crafts and some other projects.  A while back I took some things to a local store because the owner sells local crafts on a commission basis.  Nothing has sold yet but it’s a new store still.  It’s not particularly profitable yet.  She’s planning a street fair for November and my goal is to have enough doodads and whatnots put together to have my own booth!

I did make another change, too, about two weeks ago.  I started writing down everything I eat and how many calories it has.  Wow!  When I pay attention to what I’m eating, I really don’t want it as much as I thought I did!  In fact, just by calorie couting, I’ve gone down 10 pounds in 2 weeks!  Next I’m going to add some exercise to see what happens!  Wootwoot!  Heck, if I could lose 60 more pounds, not only would I be ecstatic, I’d also be slimmer than at anytime in my post-pubescent life and might consider a bikini for the first time ever 😉

Right now, though, I have to wake up at 5:30AM and I couldn’t be happier about it!  Good night!

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 🙂