Category Archives: Tyler

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!

Sabotage? I think not!

Riley is doing amazing!  Seriously.  Incredible.  The difference in her in just the last few months is unbelievable.  Her speech.  Her social skills.  Pretty much everything.  I was terrified at taking on multiplication again after the summer since it was so hard in 3rd grade but it feels as though she assimilated that information over the break.  She’s doing great!

I’m doing wonderful, too!  I’ve lost nearly 15 pounds in the last month or so.  I’m really close to a milestone!  I’m wearing pants I haven’t been able to squeeze into for months and they’re comfy!

Then there was the weekend…

Oh dear.  Run, run, run.  Busy, busy, busy.  Tyler had his play performance on Friday night then two showing on Saturday.  Riley and I went to a symphony concert Saturday evening.  (It was a fundraiser for the ranch she where she rides and they host the Special Olympics horse show.)  I ended up having dinner at 4pm at Steak N Shake.  Single burger with fries and a diet coke.  Then everyone… both kids AND my parents… ordered ice cream!  Ugh!  It’s soooooo yummy!  And I sat there sipping my diet coke.

So of course I had to have a snack at the concert (concession profits also went to the ranch).  Thankfully they provided some veggie chips (surprisingly good), fruit and bottled water.

Then Tyler’s play let out right after our concert (at adjoining venues, conveniently) so he just HAD to go to McD’s to hang out with the other actors some more.  So here I am at McD’s with an excited 16 year old, exhausted (and grumpy) 9 year old, my very tired daddy, and me.  Again, all these calories are just flying around me!  Did you know McD’s is now putting calorie counts next to every item on the menu?  I love it!  Fruit ‘n’ Yogurt Parfait!

I’m so proud of myself!  I just went over 1200 calories for the day!

Today wasn’t much better.  I didn’t even get lunch today!  Busy, busy, busy.  Run, run, run.  What’s a gal to do?  I’m sure I’ll make up for it tomorrow!

But with everything against me and temptation abounding and stress through the roof, I stuck with my desire to be healthier and fit into more flattering clothing.  Sabotage will just have to try harder next weekend!  (I don’t mean that as a challenge… really!)

Productivity!

I tell you what, with the kids back in school, my productivity has shot through the roof!  Finally I was able to put a coat of paint on my dresser.  It’s been sitting on my balcony for a week now.  The primer took days to dry because of the humidity.  Then it rained.  I could have painted it yesterday but Riley wanted to go for a walk.  How can I turn down an offer like that!  But today… high around 80.  No humidity!  Clear, blue sky.  Kids at school.  Yep, that thing finally got a coat of paint on it!  I really want it back in my room.  There are no words for how much I HATE having my clothes on the floor and in a laundry basket!

I also did some prep work for my healthy lunches and snacks for the rest of the week.  As well as some of the more prep-intensive ingredients for scheduled dinners.  I made hummus!  I put a bunch of stuff into my blender (a food processor would have been useful) and a few minutes later had some hummus!

I didn’t get any crafting done today but the dresser really is the top of my priority list until I get it back where it belongs.

Tyler seemed to have a decent day today, too.  He didn’t complain about school at all.  When he got home the cupcakes I’d made were just ready to eat (yes, I was THAT productive!).  Then his usual theater group had their first meeting of the season and he didn’t have rehearsal for his other play so he got to go!

Riley was pretty good today.  Poor kiddo has the first-week-of-school sniffles.  I know not all kids get that but mine get it bad.  Go back to school and within a week sniffling, sneezing, coughing, etc.  No fever as of bedtime but I do need to find her Symbicort.  It sounds like her asthma is flaring up.  Of all the traits I wanted the kids to inherit from me, my tendency towards respiratory distress was not on the list.  She was good all afternoon and evening, though.  She even did three yoga workouts that she found on the video on demand through our cable (sniffling and coughing the whole time)!  But she wouldn’t eat the dinner I made 😦  Quinoa with lightly sauteed veggies (just a tad soft but still crunchy), baby spinach, and balsamic vinegar.  I thought it was amazing and saved the leftovers to have for lunch.  Neither kid would eat it, though.  Their loss.

And tomorrow is Tuesday… oh yes, I have plans for Tuesday!  My dresser will either have a 2nd coat of paint on it or be pushed back to my room.  I’ve got some other kitchen prep on my to-do list.  And crafting!  Will it be card-making, jewelry, or something random?  Hm, I wonder what the muse will bring!  I haven’t done any cards in a while.  That’s tomorrow’s decision 🙂

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? 🙂

Habits, routines, temptations

Well, today I fell to temptation!  My new routines are not habits yet so temptation is still strong!  I overslept today… oops!  I was still up in time to get Riley ready for school but just barely!  I woke up just minutes before she did.  She gets so upset when I’m not up first!  I’ve overslept before and found her sitting in her room or standing by my door crying rather than wake me up.  She’s so sweet.  I’ve told her to wake me up if I oversleep on a school day but, that’s my Riley!

Also, I ate more calories today than I have in a day in quite a while.  Yesterday I baked some cookies for the kids for the first day of school.  Today I ate two.  Oops!  They’ve been smelling so good!  Ah well.  170 calories of cookie won’t completely sabotage my week 🙂  Anyway, last time I baked cookies, I ate half of them before the kids knew they were ready!  Even with that, I still only had 1400 calories today.  That’s a bit over my goal but still so much better than before I started tracking my eating.

Tomorrow is a parent orientation at the elementary school.  I like hearing from Riley’s teachers about what’s going on in class.  I need to know what her room is like and what they’re schedule is.  Or she’ll try to tell me about something and I’ll have no idea what she’s talking about!  Don’t get me wrong here.  I’m so proud of her!  Her ability to talk has improved immensely!  However, she can still be quite difficult to understand.  Between enunciation issues and general conversational skills issues, sometimes I just don’t get it!

But overall we’re doing great!  I’m doing great this week and my little bugaboo is doing great.  Tyler is pretty good, too.  He’s a teenager, what can I say!  The cat’s a little upset, though.  Being more active and less sedentary through the day makes it hard for him to sit on my lap all day 🙂  He’s paying me back by following me around and lightly tapping my legs with his claw and sort of biting my feet or ankles.  He’s so gentle that it doesn’t hurt but it’s very startling and makes me jump!  Silly furball.

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!

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!

 

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!