The Great Autism Mom Divide


When I was a brand new autism mom trying to get my footing and navigate my new life, I noticed something within the autism community: a divide. 

As far as “autism parents” go, there seems to be two starkly different schools of thought. 

The first one goes something like this: neurodiversity is a gift. Autism is a gift. Parents who wish for a cure to autism are wishing they had a completely different child. If you are wishing for a cure, you don’t love your child. Curing your autistic child would be child abuse. 

The second one goes something like this: my autistic child is suffering. Her life shouldn’t have to be this hard.  I’d do anything to make her life easier.  If there were a cure in existence, not curing would be child abuse. 

I’ve thought a lot about these two schools of thought.  Which group of autism moms is right?  Do the claims on either side have merit?  Is there a middle ground?

As the mom of 4 year old autistic twin girls- whose autism presents in completely different ways- I can honestly understand both schools of thought. 

Let me explain. 

My older-by-one-minute twin is verbal, social, super smart, sleeps all night every night, eats well, and is generally happy.  (Of course she has her challenges, as well: stubborn; rigid routines; eye contact difficulties, stuff like that.) Her level of neurodiversity is beautiful.  I wouldn’t change anything about her. 

My younger-by-one-minute twin is almost completely different. She is nonverbal and is completely unable to communicate even her most basic needs and wants, has difficulty interacting with people and the world around her, has sensory needs which are off the charts, has great difficulty sleeping, has severe food aversions, and has had severe stomach pains most of her life. Her level of neurodiversity is crippling and detrimental to her happiness and well-being.  I wouldn’t change her sweetness, her laugh, her brilliant mind, or our amazing bond, but you’d better believe that I would change a lot of that other stuff if I could. What parent wouldn’t want to take away their child’s pain?

Let me be clear here, I love both of my daughters equally with my entire heart. Part of that love is accepting them for who they are, which I absolutely do. And the other part of that love is wanting to do anything I can to make sure they are pain free, happy, and thriving.  If there were a cure to autism that would: give my daughter the ability to speak, sleep, eat, interact with people, and live pain free, (you know, live how any human should be able to live), you better bet I’d take it without a second thought and thank God every minute of every day for it. 

I think the moral of the story is that all cases of autism are different.  Maybe there isn’t just one “right” school of thought.  Maybe let’s end the great autism mom divide. Maybe let’s stop taking sides against each other and judging each other; and instead let’s just accept that all of us moms know our own kids best, and have their best interests at heart. ❤️

#autism

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Instead

Something I wrote very early into our autism journey.


Hubby and I pulled up to Target today with the girls (twin almost 3 year olds with autism) and parked in the parking lot.  As we parked, both of us seemed to be compelled to watch this woman with three “typically-developing” kids putting her groceries into the trunk of her SUV.  Her hair was done, her makeup was flawless, she was nicely dressed. Her three young kids (maybe 2 year old twin girls and 3.5 year old boy) were clean, their hair was done neatly (she even did pigtails for the girls).  They were all dressed up cute with adorable shoes on.  One of her 2 year olds and the 3.5 year old were walking happily, independently, by her side, not running away, not darting out into the parking lot, not screaming and throwing themselves on the ground.  Her other 2 year old was sitting nicely in the cart- not screaming, not writhing and not twisting her body to get out of the cart.  Hubby and I literally stared at this woman and her family in awe, not speaking a word, until she was finished loading her groceries and drove away.  I think maybe we were seeing a glimpse of how life could have been instead.

After she left, I looked at myself: messy hair, wearing a sweatshirt and leggings (that I probably slept in), makeup routine interrupted halfway through.  I looked at my girls: messy faces from breakfast and remnants of dried snot from their colds they can’t seem to get rid of, ragamuffin hair in their faces (because brushing their hair is an epic battle every single day), shoeless (because their sensory issues guarantee that any footwear will be kicked off immediately upon entering the store).
For a moment I let it hit me.  For a moment, I was envious.  Most people have easy lives like that woman and her perfect family.  Most women can take their kids to the store without help from another adult.  Most women can get themselves and their kids dressed, ready and out the door without breaking a sweat.  Most women can take their kids to fun places – and their kids will actually have fun.  Most women have children who are able to sleep through the night.  Most women have occasional overnight help from doting grandmas and grandpas.  Most women don’t have to worry about the possibility of dying and wondering who will take care of their adult children.  Most women… I can go on and on, but “most women” aren’t me.  And they haven’t been given the life I have.

This seemingly insignificant grocery store parking lot moment could have caused me to crumble.  Instead, I love my girls fiercely, intensely, purposefully.  Instead, I pray for my patience to be multiplied.  Instead, I celebrate every milestone, no matter how “late.” Instead, I find creative ways to connect with my girls who sometimes seem so far away.

I could have been given an easy life like that woman in the parking lot.  Instead, I was given a life that gives me strength.  Instead, I was given a life that gives me faith.  Instead, I was given a life that gives me purpose.  Instead, I was given a life that has taught this innately selfish girl what love really means.

I could have been given an easy life. Instead, I was given the life that I needed to become the person I was always meant to be. And for that, I will be eternally grateful.

#autism

Two Steps Forward, One Step Back


Every “autism parent” knows the drill: it’s “two steps forward, one step back.”  What this means is that autistic children live in a continual cycle of progress and regression. 

The progress part is INCREDIBLE. As the parent, during this part of the cycle, you are on top of the world. Maybe your nonverbal kiddo has picked up a couple of words; or maybe your kiddo who is usually in their own world just initiated play with another kid.  You start imagining your child one day conversating; imagining them one day having friends!  Anything seems possible. 

Then comes the harsh, long fall back down to reality.  They start smearing poo on the walls again, or they reaffirm their lost love of humming to themself in the corner for hours. The setbacks are a stark contrast to the amazing progress they were just making. 

Now comes the obsession part (for the parent).  What happened?  Why did the progress stall?  Did she somehow get fed some gluten?  Did she stop responding to the fish oil?  Did I make the wrong decision putting her into that school?  Was there a full moon this week? 

You’d do anything to get back to the progress.  It’s a roller-coaster of emotions, this autism ride.  You’ve got to be prepared for the setbacks, or the setbacks can break you.  The trick is to focus on the overall progress: is she better this week than she was 3 months ago?  Then everything is fine.  

As special needs parents we are expected to have lower lows, it just comes with the territory; but guess what- we also get to have higher highs.  Inter-muddled with all of our setbacks, all of our heartbreaks, are amazing triumphs.  

Like when my nonverbal daughter, at 3 years old, demonstrated that she recognized every sight word I showed her – at least 50 of them (holy crap- she can read!!!!)

Like when I realized that my verbal daughter can tell me the title of any song by the time the very first note is played, or when I found out that she has mapped out the entire city and can tell you how to get anywhere she’s been – even if approaching from a different direction.

As an autism parent, it’s easy to see the future as bleak.  Our kids are different. But guess what- different doesn’t equal worse. My advice is to find what your kiddo is good at- find what motivates them, and see what they can do.  You won’t be disappointed. 

#autism

Denial

 

Road

The word “grief” is typically reserved for describing the process you go through when a loved one dies, but there is another kind of grief that no one talks about.

When you are grieving, it is said that you go through five stages: denial, anger, bargaining, depression, and acceptance.  It is also said that people may go through the stages in a different order, skip stages all together, or jump from one to another, then back again.

Immediately, I was at the acceptance stage, and my husband was at anger.  It made me feel so (I don’t know, evolved? superior?) to immediately be able to accept my twin daughters’ Autism diagnosis.  This was fine.  I could do this.  I would be the strong one while my husband was falling apart.  This is how it went for the first 3 years after their diagnosis.  During my, ahem, “acceptance,”  I read everything I could on the subject.  All of my free time was spent researching.  Before I went to bed: research.  First thing after waking up in the morning: research.  I joined Facebook support groups and biomedical groups.  I sought out specialists.  I truly thought there was a way out of this, and I was going to find it, apply it, and my daughters would be cured.  I’m sure you are now seeing the writing on the wall: my “acceptance” was not, in fact, “acceptance.”  It was full-blown denial.  Like, denial with a side of denial, and an extra denial cherry on top.  (Okay, maybe a bargaining cherry on top.)

Either way, thanks to denial, I didn’t have to think about what their futures would look like if they kept their diagnosis.  I didn’t have to think about if they would ever live independently, or go to college, or get married, or have kids of their own.

Forget all that- I didn’t have to think about if they would ever be able to function in public, make a friend, keep their clothes on all day, tell me “I love you,” or even speak at all.  And oh God, what happens when they hit puberty and still aren’t potty-trained?

Let me explain special needs grief.  It’s a different animal all together.  There’s no finality to it.  This kind of grief is – not just one but a continual stream – of heartbreaks.  Smaller daily heartbreaks, like having to leave the a full cart of groceries at the store because your overstimulated daughter is writhing and screaming in the cart; and bigger heartbreaks, like finally giving in and getting your 4.5 year old a device to speak for her, because it is believed that she will never be able to speak on her own.

I kind of miss denial.  Denial meant I still had hope.  I miss the feeling of “knowing” that it was going to get better, that the girls will somehow progress despite their diagnosis.  I will never be able to go back to denial again; there is no denying their autism these days.  I’m sure I will re-visit the depression stage time and time again, as it seems to come back when there are major setback with one of the girls.  

I hope I’m getting closer to being at acceptance – this time, true acceptance.  Denial made way for depression, and now depression is making way for acceptance; I can feel it. 

#autism