Category Archives: PDD-NOS

An open letter to my friend who insists her child was damaged by vaccines

Dear friend,

My dear, dear friend.  I’m not going to tell you your child wasn’t damaged by vaccines.  Frankly, I don’t know.  Nobody knows all there is to know about autism and I certainly don’t know (or care to know) your child’s medical history.  I can’t and won’t try to argue with you.

No, what I want to tell you is how I see your comments about your child and autism because I know you don’t see what I do.  This is why I’ll say “I infer” rather than “You imply”.

When you say that vaccines damaged your child, I read your child is damaged and not who she was born to be.  I read that you think your child is a medical mistake.  I read that your child is not part of God’s plan.

Do you really believe that?  That your child is a mistake?  That she is not who God created her to be?

More importantly, have you told her that?  I can’t imagine being a teenager with a neurological/cognitive/emotional disability and being told by my mother that everything that makes me who I am is damaged and a mistake and outside of God’s plan.  I had a bad enough attitude as a teenager.  With that kind of baggage I would have been intolerable.

As I’m sure you remember, both of my kids are autistic.  I have no reason to believe it was caused by any external factors.  Nor do I have reason to care.  If vaccines caused their autism, then I’m grateful to vaccine makers for not only keeping my kids from getting devastating illnesses but also helping make them the wonderful people they are.  My children are who they were born to be.  We certainly have our problems, especially my older child (aye-yi-yi, have we had our problems!), but that doesn’t define our relationship.  Unconditional love defines our relationship.

I think all parents go through a mourning phase where they have to accept that children will be who they are and not who we dreamed of them being.  I think that’s harder for special needs parents.  I also think it’s more important we let go of the anger and sense of loss and get back to the task of accepting and loving our kids for who they are.  Unconditionally.  Without reservations.  Without regrets.  Without expectations.  Definitely without the poison of anger.

I know you love your child.  Does she?  Not just in words but in every action of your being?  Does she KNOW?

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When you ask an autistic kid for a writing prompt…

Last night I was writing and decided I wanted to do some creative writing.  But I couldn’t think of anything to write about!  Just then Riley came out of her room and I told her my problem.  In her excited way, she bounced and exclaimed, “A horse with hands!”  We discussed this idea for a moment and I ran with it!  So based on Riley’s prompt of “a horse with hands”, I present to you Bunny.


Once upon a time there was a horse.  She was a beautiful mare, white with brown patches. She was a very good horse, kind to all the other animals, but her ears were a little too long and her tail was a little too short so all the other animals started calling her Bunny.

One day when Bunny was feeling particularly self-conscious about her ears, she ran off to hide deep in the woods.  She began to talk about her troubles with anyone who would listen.

Unbeknownst to Bunny, the caterpillar perched on the toadstool was a mischievous wizard.

“Neigh,” she cried to the caterpillar, “I do so hate the way the others tease me about my ears.  I wish they would stop!”

“Ah,” answered the caterpillar. “What if I could make it so they never thought about your ears again?”

“Oh, could you?” Bunny was ecstatic. “What can you do?”

“You see my toadstool?”

“Yes. What about it?”

“It’s magic!” exclaimed the caterpillar.

“Neigh,” laughed Bunny. “That’s silly!”

The caterpillar gave her a very stern look. “No, it is not silly.  Just you wait and see!”

He broke off a small piece of toadstool and put it into his pipe.  He lit the pipe and, once the smoke had a musky odor and was thick, he blew three big puffs straight into her face!

Bunny sneezed.  Then she coughed.  Then she said, “Now what? Are my ears a normal size now?”

“No,” said the caterpillar, “but noone will tease you about them anymore.”

Bunny thanked the caterpillar for his help then she headed home to see if the spell worked.

“Maybe it’s an illusion,” she pondered, “so noone will see how ridiculous my ears are.  Or maybe it’s a niceness spell so anyone who sees my ears just wants to be nice to me instead of tease me!”

But halfway home her shoulders began itching like crazy!  She found a clearing large enough to roll in but it did not relieve the itching.  “Oh, I shall go mad if this doesn’t stop!” she cried.  Then she tried rubbing her shoulders against a tree trunk.  That’s when she felt the bumps growing on her shoulders!

“Oh! Oh! What is that?” she cried out.

“Oh, neigh! This is dreadful!”

She tried to turn her head around to see the bumps but they were out of her view.  She wanted to get to the water to see her reflection but was slowed by the dreadful itching!

Suddenly Bunny felt a little pop on her shoulders followed by a most sensational scratching.

“Oh, neigh! That is so much better,” Bunny sighed.

She began to gallop to the lake so she could get a look at her shoulders because the itching and pop was very concerning.

But strange things happened while she was running.  Branches that would normally have hit her in the face and chest were pushed back out of her way as she passed.  The sweat was wiped from her brow.  But she was in such a rush that she barely noticed these anomalies.

When she arrived at the lake, a few other animals had gathered to drink.  They saw her burst from the trees and screamed, terrified at the changes in her!  “Oh! Tell me, please! What has that dreadful caterpillar done to me?” Bunny cried.

Three horses, although scared, came up to Bunny and began talking to her.  “What happened?” one of her friends asked.

Bunny explained how she’d been upset about how they had been teasing her about her ears and how she had told her problems to the caterpillar.  She told them how he offered to help but seemed annoyed when she didn’t believe his toadstool was magic.

The whole time Bunny was speaking she had the lovely feeling of someone petting her mane and scratching her ears and her friends were staring at her in disbelief.

When Bunny finished her story, her friend said, “You need to stay calm, okay? Come with me.”

Bunny followed her friend to the water’s edge.  She couldn’t bare what she might see and closed her eyes.  Suddenly she felt a very comforting squeeze around her neck and was startled into looking into the water.

Bunny was completely aghast at what she saw and reared up in dismay screaming, “No! No! No! Neigh, what did he do to me?”

Perfectly formed human arms had grown out of her shoulders!  She was even more of a freak now!  Oh, what would she ever do?

She had moved the branches so they wouldn’t strike her!  She had wiped the sweat from her own brow!  It was her own hands petting her mane and her own arms comforting her!

Oh, this was strange!  What would she ever do?

She began to cry but her own hands reached up and wiped her face.  She began to sniffle but her own arms stretched around her and gave her a loving squeeze.  As she grew more and more confused she became less and less upset.

She trotted up to a tree and told her friends, “Hey, watch this!” She grabbed some choice leaves from higher up than horses can normally reach and put it in her mouth!

“Oh, wow!” “Oh, that’s cool!”  “Get me some!” all her friends cried out.

“Check this out,” she said as she walked up to one of her friends and began to scratch her ears.  “Oh, that feels good!” “Do me! Do me!” everyone called.  “I want some magic toadstool, too!” they cried.

Things never did go back to normal for the friends.  After all, what’s normal about a horse with arms?  But Bunny was able to help her friends.  Having a couple of arms in the woods really did come in handy!  And one things is for sure, her friends never teased her about her ears being a little too long or her tail being a little too short ever again.

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!

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!)

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!

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!

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.