Musings of a Marfan Mom

The Gritty Autism Mom Mission, aka We’re All Lost in the Supermarket

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Our mission was simple: hit four stores and one fast food joint, all in the same general vicinity. In attendance: two well-rested children, two never-rested adults and one wild-card: autism.

We’ve known about M’s diagnosis for almost a year now, but his sensory and behavioral issues have really only amped up in the past 6 or 7 months. This necessitates a lot of planning for outings and even more patience. I’m trying to learn the language of autism and therefore anticipate what my son will need, but it’s hard and many days I feel like I’m failing miserably at it.

Saturday our first stop is to Kohls. Almost immediately M begins to whimper “All done, all done.” He alternates between running through aisles and hiding under the clothes racks.

Dinner, another store, no problem. Maybe he’s over whatever was bothering him.

Come to Babies R Us. All I want to do was find a vibrating teether, which M’s occupational therapist thought might be useful for some of his feeding issues. It’s too much for M. He wants to run and put things in his mouth. I can hear him screaming clear on the other side of the store. Everyone’s staring. Not for the first time, I wish for a t-shirt that read “I can assure you, I’m enjoying the screaming even more than you are” or “My kid is awesome, it’s the autism that sucks.” I end up sitting on the floor in the checkout line with M on my lap, giving him joint compressions to try to calm him down.

All that’s left is the grocery store. Now, M is stimming…alternating between making loud noises with his hand in his mouth, rocking, and saying “I want poo” over and over and over. His diaper is not dirty. I’m failing at staying patient because hearing “Poo. POOOOO. I want poo. I want poo,” for over an hour makes it really hard to think.

When he finally DOES have a dirty diaper, we have the new challenge of dealing with the bathroom. M is afraid of public bathrooms. The entire time I’m changing him, he cries “Nooo Mommy. All done! All done! All done!” Even after we’re out of the bathroom he continues to say “I want poo” in a frightened voice.

Do you know what it’s like to understand something is bothering your son but have no idea what it is to fix it because he can’t tell you?

Agony.

Some days M loves going on errands. Other days are like this. We have no idea how to predict what kind of a day it will be for him.

The only bright spot of the evening is when I find the vibrating teether at the grocery store. I do a victory dance in the aisle….pumping my arms like Craig Ferguson and shaking my hips. “I found it, oh yah, I found it! For half off the therapy store price! Who’s good? I’m good! Oooh yaaaah!”

I never would have pictured myself dancing in public over a teething toy, let alone any of the hoops we’ve jumped through for autism thus far. But really, do any of us envision the struggles we’ll have in the journey to and through motherhood?

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16 Comments

  1. This post is an example of why I love your blog. Even though I don’t always comment, I read every word because it moves me. We are all moms who are dealing with issues of wanting to do more; to find more patience or understanding or compassion while coping with feeling powerless at times to help a child whom you adore. I admire how deeply you’ve been able to pull from within yourself, while at the same time understanding that it is what you do. There is no other choice but to find it. Somehow. Some way.

    And great title! 😉

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    marfmom Reply:

    Thank you, both for your kind words and your help with the title! :-)

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  2. I also read every word. Thank you for helping me and others understand the challenges of Autism.

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  3. Dear Maya, thank you for sharing this with us. I can only imagine what a challenge that was for you. Honest to God, you should make the “my kid is awesome tshirts and sell them to raise funds for your fave charity” – I think that’s brilliant wording. :-)

    You are probably already familiar with Jess but the part about the toy store made me think of her Toys R Us Autism Awareness month post – in case you haven’t read it here it is: http://adiaryofamom.wordpress.com/?s=toys+r+us

    Paula

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    marfmom Reply:

    Haha maybe one of these days I *will* make that shirt! :-)

    And thanks for introducing me to Jess and her post. I hadn’t come across her before!

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  4. We have that teether too!

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  5. I try so hard not to be judgemental of moms in the store with kids that are freaking out. You never know what really could be going on….and I can imagine how frustrating this is for you. But you really are an amazing mom and such a strong, passionate woman. I don’t think a lot of moms could deal with what you’ve been through and I really admire you for that – even if I’m not a mom yet!

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  6. I am going to go out on a limb here and be honest.

    Today, I woke up cranky. Anything and everything has annoyed me. Today at work someone brought in a cranky toddler. The child constantly screamed and I swear touched amd moved everything on my desk. I wanted to scream. I wanted to tell the mom to please control their child. Sadly, I never thought that just maybe their could be other issues going on.

    Thank you for the reminder to not be so judgemental in the future as I was today. :(

    [Reply]

    marfmom Reply:

    I wish I could say I never judge moms of cranky toddlers anymore, but that’d be a lie. As we’re struggling more with M I’m getting better at reminding myself that I might not know the whole story, but it’s hard, ESPECIALLY on days when I’m having a difficult day too.

    I’m sorry that you had a rough day today :-( I hope tomorrow is better for you and that it is cranky-toddler free! :-)

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  7. That cannot possibly be easy and jerks dont make it any easier. People like you sharing their stories are so needed because I know that I prior to having children would have been one of the eye rolling jerks thinking that you just couldnt “control” your child.

    Fast forward and I am now a mother and know full well that it has nothing to do with control. Our babies are all different and no one knows why a child may be seemingly acting out. Stories like these help a lot.

    Also P is starting to enter the I want everything phase at the store. Have you signed up for Amazon Mom? Saves me from a ton of crazy toddler store trips.

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    marfmom Reply:

    Amazon Mom does more than just diapers? I had signed up for it at one point but I think it lapsed…I’ll have to check

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  8. oh and I have no idea how I missed your button but I grabbed it today!

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    marfmom Reply:

    Thanks! Yours is on my button blogroll too! :-)

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  9. What are joint compressions?

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  10. Wow. How do you hold it all together? I’d be dancing, cheering, and who knows what else after finding the teething ring after all that. Heck I’d be cheering if I still remembered the teething ring’s existence by that point. It sounds overwhelming. Your son is so lucky to have such a loving mother. I can’t imagine how powerless it must make you feel to not know what’s wrong when he’s screaming.

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    marfmom Reply:

    Lol yah I’d forgotten about it and found it by accident!

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