The Hard Parts of [our] Autism

I’ve read them too.  “The Ten Hardest Part of Being an Autism Parent” or “The Ten Things NOT to Say to an Autism Parent”, etc. etc.

While I understand why people are trying to speak out to help others understand Autism, one size does not fit all.  Just as ASD is exactly that– a spectrum– families, spouses and children experience Autism in a completely different way.  There are hard parts.  There are hilarious parts.  There are frustrating, beautiful, victorious, terrible and amazing parts of Autism.

Many believe that Autism kiddos are stuck at home all day long banging the back of their heads against the wall or spinning toy cars round and round for hours on end.  The truth is you have encountered SEVERAL people with Autism and haven’t ever known.  The beauty of a spectrum disorder is the spectrum!  There are some very low functioning children (and adults!!) and also those that are high functioning.  While we’ve been experiencing high functioning Autism with Lucy thus far, she constantly changes with progress and sometimes, falls much farther behind.

But if you didn’t know this already… there is all of those things in parenting a typical child as well.

I will NEVER say my job as an “Autism” mom is harder than that of a “typical child’s” mom.  Being a parent is hard.  Period.

While my job as an Autism mom may not be “harder,” it does look much different.

1. Perfection.  Don’t you dare mess up Lucy’s line of toys she’s spent so much time perfecting.  Don’t move a toy without her knowledge.

2. A meltdown is not the same as a tantrum.  Lucy needs LOTS of processing time.  She needs time to herself, don’t talk to her or touch her.  Don’t have expectations.  She is NOT being naughty, she is over-stimulated, needing sensory input or processing time to understand why she isn’t getting what she wants.

3. Little sister syndrome.  Autism does not only affect Lucy.  We have to embrace it as a family.  Unfortunately that sometimes comes with downfalls.  Often Eleanor is left out.  Lucy requires more appointments, one-on-one time, different punishments, and honestly, more attention.  I find myself talking about Lucy more than Nora because I have unique struggles I share.  I believe it is a privilege and responsibility of mine to share my experience as an Autism mom to spread awareness and equality.  (Side Note: it absolutely HAS to be mentioned that though Lucy is the one with a “disability,” Nora is absolutely my most difficult child.  She has a temper, sass and high-maintenance personality like you wouldn’t believe and she WILL be the one keeping me up at night.  She is my real-life sweet and sour patch kid.  So sweet and so wonderful, but such a terror! Ha!)

4. Transition.  She goes to school five days a week and five days a week it’s hard to get her out the door.  She knows the routine, but that doesn’t make it easier to go to one place to another.  We need to plan for extra “stress” time.  There are no trips unplanned.  And if there ABSOLUTELY is, there is bartering, endless discussion and lots of “It’s okay, you’re fine.” (But am I just telling myself that?)

5. Grooming.  Hair brushing, brushing teeth, trimming nails… INSANE.  We’re talking every trick in the book.  Want a freaking pony? I’ll buy you one if you just let me brush your hair.  Distraction is key.  Let’s watch a movie, drink some juice, eat some popcorn, talk about funny things and I’ll possibly get one fingernail trimmed.

6. Money.  I recently spent $68 on a weighted blanket.  And honestly, that’s money I don’t really have for a blanket.  Four trips to her psychologist (after insurance paid their portion) cost me more than $600.  There’s no cost to my daughter’s needs, but….

7. Pain.  I’ve witnessed, on several occasions, trips, falls, head-bonks, with no tears and adamantly shouting, “I’m fine, I’m fine.”  And also watching the dog brush up against her while she cries, “Piper biting me!”  It’s hard to tell someone else what hurts.  It’s hard to explain pain to someone who feels it differently.

8. Abrupt changes.  Changes in schedule, people, sudden noises… Ahhh!!!!  Don’t even get me started about a trip to the dentist or doctor.

9. Friends.  “Does not engage.” “Does not perform at age level.” “1 out of 5″….. it wears on my heart and soul.  I want her to find others that truly love her.  I pray that children look past her quirks and embrace her.

10. Poor communication.  More than half of what Lucy says it rote memorization, or things she’s heard on movies, song lyrics, or something she’s overheard.  Another issue we deal with is her comprehension skills.  She often needs additional processing time.

“What did you do at school today?” I’ll ask when I pick her up at the bus stop.

“Dad is in the silver car!”

“Yes, Lucy.  But listen to what Mommy is asking.  What did you do at school today?”

Silence. Typically this causes issues when we need to know what she wants, what she feels, if she doesn’t feel well, as well as others having the expectation that four-year-olds are able to communicate independently.

11. Love.  She hugs and touches Devin and I.  It is apparent in her words and actions that she “loves” us, but if you watch closely lots of hugging typically indicates her needing sensory input.  She rubs my neck, softly pinches my arms, hugs, hugs hugs.  “I love you SO much.  I just love you, Mommy.”  Beautiful.  But does she understand what she’s saying? Or just like most of what she says, is she rote memorizing sweet phrases to share with others?  That’s hard.  Maybe that’s the hardest.  But it’s also the easiest to roll with.  I’ll let her hug and love on me all she wants because I need it.

I can go on and on and on and on and on about how amazing Lucy is.  Trust me.  But it is hard.  Being a parent is hard.  Being an Autism parent is hard.  I never know if what I am doing is helpful or hurtful, but who the hell ever knows what they’re doing?

I will tell you one AMAZINGLY HUGE difference between a typical parent and myself.  Our victories are much sweeter.  Ever squeaked in total excitement because you watched your child say, “hello”?  I have.  Ever experienced insane joy after hearing that your kid participated, even in the slightest bit, at circle time? I have.  I’ve felt tears well in my eyes after watching the “tiniest little things” that, in fact, are HUGE strides for her.

Proud can’t even begin to describe how I feel.  Proud and tired.  But then again, maybe that’s what all parents feel.


P.S. I want you to know that I would NEVER change anything about my happy, silly, beautiful daughter.  Having Autism is what makes her unique.  And though it may be challenging at times, we’re so blessed to be invited into her world.

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What would I tell the girl on the left?  How would I tell her how her life would completely change?

1.  I’ll start with the easy ones; 10 more birthdays, five more surgeries, four more schools, two more dogs, and eight more moves.  You’ll marry the high school sweetheart.  You’ll have two baby girls named after Beatle’s songs.

2.  You’ll be challenged in ways you won’t even imagine.  Life is hard as an adult.  They’ll be days that you’ll want to quit and give up.  You’ll cry, take a bath, do some retail therapy and call Mom.  You’ll figure it out.

3.  You’ll only have to do the dishes a handful more times.  You’ll let Devin handle the dishes.  You’ll be a pair in every way imaginable.  You’ll love him when he’s wrong (though you know it’s not often) and you’ll love him when he’s messy.  You’ll respect him, you’ll listen to him, you’ll support him.  You won’t be perfect at it, but you’ll try your best. You will be wrong sometimes and you’ll need to get over it.  He’ll still totally “get you” unlike any other person in the world.  He’ll drive you crazy.  He’ll do an amazing job.  Basically you’ve won the lottery.

4.  You’ll really figure out that “Best Friends Forever” thing.  You’ll have the worst heart breaks ever.  You’ll lose a lot of bad ones and gain a few amazing ones.  They’ll help you figure out who you really are.  You’ll realize that you can disagree about everything, but you can still be kind.  The ones that truly loved you before will still love you.  Those best friends will put their work in. You’ll still be super annoying (what, you didn’t know that I knew I was annoying?) but your friends will like you anyway. They’ll go with you through your mess, through your unkind words and bad hair days.  They’ll soften your heart.

5.  Money gets confusing.  The more you have, the more you’ll spend.  Maybe you think insurance and a car payment is overwhelming… start preparing yourself for much more.  You’ll figure out that garage sales aren’t so bad and second-hand items are actually okay.  You WILL need to budget.  You WILL get by.  God will provide.

6.  You can’t eat Goldfish and peanut m&m’s for lunch anymore.  For some reason, you’ll eat much better, but get much larger.  You’ll wake up with large lumps that YOU SWEAR was NOT there the night before, but there they will stay.  The 10 extra pounds you’ll now rock (okay…. more like 30 or 40) won’t change who you are.   You’ll find more inner beauty than ever before.  You’ll find out that your heart means so much more to the world.

7.  Mom actually knows a thing or two.  No explanation… she just does.

8.  You’ll actually love to go to work… most of the time.  You’ll love junior highers (seriously!).  They’ll teach you things and make you think.  They’ll allow you to experience God in a completely different way.  You’ll see them change so quickly.  You’ll be so proud of them.

9.  You’ll figure out what’s important.  You’ll slowly give up an image and embrace life in a different way.  You’ll forgive people.  You’ll desire to do really good things for the world.  You’ll say “I love you” and really really really really mean it.  You’ll kiss your babies and hold them close.  You’ll hold little moments in your memories as tight as possible.

10.  There’s a lot of things you won’t do.  You won’t always do it right.  You’ll make a lot of mistakes, some really big ones.  You won’t understand why some adults act like children.  In fact, you’ll be mean and nasty too sometimes.  You won’t always appreciate the moment.  You won’t always do your best.  You’ll screw up.  You won’t apologize.  You’ll let money, greed, lies, jealousy, anger, and depression get in the way of what’s important.

But you will figure it out.  And before you know it, 10 years will have gone by and you’ll notice how much you’ve changed and how life has changed.  And it will be good.  Because life at 28 is the best it has ever been.


What I Want You To Know About Autism

I’ve not ever considered myself lucky. I’ve never won at the casino or drawings for free lunches or t-shirts.

But things are different now.

Some numbers:

1 in 68 children are diagnosed with autism presently.  Those numbers have drastically changed since the early 2000’s when we were experiencing a rate of 1 in 150.  ASD is most common among boys, outnumbering girls 5 times (1 in 42 for boys and 1 in 189 for girls).  Almost half of all children diagnosed with ASD have average to above average intelligence (46%).  Parents that have a child with ASD are 2-18% chance of a second child who is also affected.  The average cost to care for a child with autism is estimated between $17,000-$40,000 per year.

What those numbers mean to me:

We are on a rise, that’s for sure.  There’s no denying that fact.  Whether medical researchers find that Autism is caused by genetic mutations, immunizations, environmental factors or all of the above, we continue to see numbers of Autism grow insanely fast.

I don’t know what combination of causes will cause Autism and I honestly don’t care.  Seems a little harsh?  Sorry, I’ll leave that up to the medical experts.  I am certainly not speaking for all parents of kids with Autism, but the “why and what” doesn’t matter to me.  I continually focus on the “who,” and that my friends, is my Lucy.

Kids with Autism are often thought to have either very low academic scores or savant-like abilities.  As much as I was hoping for a little card counter or violin prodigy, I think I’m ending up with a super average-intelligence girl.  Her teachers recently told me that she is “Kindergarten ready,” as in, she can correctly identify all letters (uhum, at 18mos old), identify sounds of all letters, numbers, shapes, colors.  *Insert cute story* At her last testing, she was asked to rhyme a word with DOG.  Her answer…wog.  Sure, Luc.

She lacks plenty of skills including many OT things like cutting and coloring, story recall, comprehension,  and anything relating to social skills.  She is very comfortable around adults she knows, will generally make eye contact and speak without hesitation.  Kids are a different story- she finds it difficult to stay on task with another child and will rarely initiate a conversation with them.  She constantly kisses and hugs Devin and myself.  She says, “I love you SO much, Mom!”

$568.78 is what I was just billed to see a children’s clinical psychologist for three visits.  Unfortunately that doesn’t include any other outside therapies such as; Occupational, Physical, Speech, which Lucy could definitely utilize.  While I am constantly seeing tremendous strides in Lucy’s academics, speech and OT that is provided to her by the school district, we could be doing more.  That is, if we had the money or other resources to help aide in providing her with those necessary skills.

This is what I know:

Lucy is fricken cute.  She likes to use movie quotes to argue with me.  My most recent fav, “Mom! You are never leaving this tower! Ever!  Ugh, now I’m the bad guy!” (Tangled).  She has very specific expectations.  She wants her straws lined up in her cup just the way she left it.  If Nora comes around to mess it up (which she often does because a. she’s two and b. she’s my sweet & sour child) get ready for a complete and total meltdown.  It’s insanely rewarding to be her mother.  I know that there are days I’m not sure that I have enough to be enough for her.  She deserves more.  She deserves it all.  I know when things are going bad they go really bad and it’s often my fault.  It’s my fault for not understanding how I can communicate with her or how I can easily transition her to one place to another.  I haven’t figured it all out, but I’m trying.

I don’t know why we were chosen to be her parents.  Or, in other words, how we got to be so lucky.  Lucky enough to win the 1 in 189 lottery.


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