Category Archives: Asperger’s

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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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!

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!

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!

 

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!

Accept, include, help, learn

Being a mother has taught me more than I probably realize.  Those lessons have been greatly enhanced by being mother to two children with ASD.  They have opened my life and my mind to a whole world that I never would have experienced without them.

The world that surrounds children with disabilities is so wonderfully accepting and inclusive of everyone, disabled or not.  These gentle teachers are helping me to learn that everyone has a story and everyone’s story is worth knowing.

One of my pet peeves is the common inclination to equate the inability to speak with a lack of intelligence.  If someone doesn’t speak, they must be stupid.  Why?  Certainly the ability to speak does not make one intelligent.  One need only turn on the television for proof of this.

I never thought about it before but I used to see people as “bad” or “a jerk” or “retarded” or “gross”.  Now I recognize that these are terms of judgement and that I don’t know the whole story.  Certainly many actions are unforgivable.  People, however, can be helped.  Whether I need them in my life is a different matter altogether.

Perhaps one day it will be easier to see someone and think “How can I help you today?” instead of “How can I judge you today?”  We don’t know how a person got to where they are.  It might be a miracle but because we see them through the lens of our own experiences they seem inadequate and perhaps stupid.

For myself, I hope the next time I’m tempted to think something negative about a person I remember to take a second and realize that maybe just being there is a miracle for them and, hopefully, not be a part of anyone’s problem.

How can I judge you today?

How can I judge you today?  Lazy!  Stupid!  Retard!  Gross!  Bad parent!  You’re going to Hell for that!  Oh, you’re on welfare?  You must be worthless, drug-using scum!  Hey, lady, control your brat!  Wow, what a slut… use birth control, welfare queen!

Any of that sound familiar?  Maybe something you said or heard about someone?  Or about you?  Sadly, most of us are prone to using judgmental language without even realizing it.

Call me a “short bus window-licker” and I’ll say “I remind you of a sweet, interesting child with a sensory fascination?  Interesting.”  There is more to every single person than what we see or what the labels tell us.

Yes, my child has autism.  No, she’s not autistic.  She’s a girl.  Autism is just part of her.  Any person with any condition is more than their condition.  It is just part of what makes them so fascinating.

The community that surrounds individuals with disabilities has taught me so much.  These gentle teachers have helped me understand that language shapes thought.  When I catch myself thinking something nasty about a person, I backtrack and try to think of what could be going on in their life.  I’m not always successful but just the act of backing off the judgmental words helps my thoughts and attitudes turn toward helping instead.

I’m much happier with my new perspective!  The world is a much more interesting place when I think about the amazing people I’ve met and the wonderful people I’ll meet soon!