It Really Does Take a Village

I was quite saddened to read a  blog post brought to my attention lately.  The blogger, Smockity Frocks, judges a four-year-old-girl and her grandmother on an afternoon at the library. (Google docs version of the original post here.) The story has autism written all over it, and the comments that ensued had me growing rather irritated.  The blog has since been removed, and she has now posted an apology.  http://www.smockityfrocks.com/2010/03/an-apology.html (Thank you!)

I’ve spent a few days mulling over my feelings on this blog and it’s responses.  My thoughts were everywhere, ranging from if I couldn’t get a good christian woman’s help or sympathy I’m really doomed in this society, and wondering just what kind of good christian woman she really is, to just being immensely saddened at how  my son and the parenting style I am forced to use will be viewed and judged by everyone I encounter.  I’ve often bolstered myself by saying it’s not my fault society doesn’t understand us, its societies’ problem for being unable to embrace our differences and gifts.  But it hurts. People will only see the negative and not realize just how much work it took to even be there and not having a total meltdown.  So what do we do?   I don’t know.  Even Autism Awareness doesn’t seem to be working, as one of the comments on that blog misquoting in context Temple Grandin ‘s comments about teaching polite behavior demonstrates.  Let’s not forget that at four, Ms. Grandin didn’t speak, was prone to tantrums, liked ripping things and stimmed.  Yes, she learned social behavior, but not by 4, and not without infraction.

We have to teach our kids to be social, but out in society!  Out in public the assaults on their nervous system is so intensified, that even though we have talked about it at home and in the car it’s not as effective as actual practice.  I see myself, hopefully, one day to the point of the Grandmother and the “coddled” little girl at the library. Discussing something as abstract as patience with my son, and while maybe not at the level to appease the snippity, knowing how far we’ve come from the days when every public outing ended in tears, running and screaming.

Also, the blog reminded me how we’ve been treated in public before.  I’ll share the story of two  nurses, because you would think they would be aware of autism and other delays in children.  Both stories happened just prior to receiving my son’s diagnosis.

The Tale of Two Nurses

It was my son’s two-year well-baby check up, only he wasn’t very well.  He had yet another double ear infection that day.  He also hated going to the doctor, in my mind, learned behavior from the surgery he had when he was just a bit over a year old.  By the end of the visit, he was beyond control.  The assembly line medical care provided by the military clinic resulting not in patience but forcefully restraining my son as to get the exam done in the alloted time.  As he had the ear infections, we couldn’t just leave after, but had to wait for the pharmacy at the clinic to get his medication, and I needed to schedule a follow-up.  My son was so out of control I couldn’t hold or soothe him.  He hit and bit  and wiggled and kicked.  I held his arm while he screamed and tried to go boneless to slip from my grasp.  I did happen to notice that running seemed to soothe him, and since nothing else was working, I gave in and let him do a few laps.  (In hindsight, this was vestibular input, probably even more out of whack due to his ear infection).  At this point a nurse came up to me and told me I had to get him under control or she would report me to patient administration and have us barred from the building.  I was about at my wit’s end, had a rude retort for her and then locked my son and myself into one of the private bathrooms used for obtaining samples and had a good long cry.  When I came out, the patient advocate was there along with a man in uniform who helped us get through getting the medicine so we could leave.

Just a few weeks later my son had to be examined by a orthopaedist.  Only this time he started his meltdown the moment we entered the building.  I was trying to juggle soothing and distracting him while filling out the patient intake forms.  Only this time a nurse came out after a few minutes of watching me struggle.  She spoke in a very friendly and soothing voice to my son and helped distract him so I  could do the paperwork.  Everything about the entire visit went more smoothly at that point, and it just took a little compassion and help as opposed to harsh judgements.  A few weeks later, we did receive the autism diagnosis, and I have since learned coping and parenting skills but even that is not perfect.  When other parents and adults step up to help it makes a big difference, both for my son and me.  I may try my hardest, but I’m still just a single mom who needs help.

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7 Responses to “It Really Does Take a Village”

  1. Melissa Says:

    Here’s a link to a blogger keeping a list of blog responses to Mrs. Frocks

    http://www.squidalicious.com/2010/03/susan-senator-interview-smockityfrocks.html

  2. Mandi Says:

    Thanks for sharing that story, Melissa. Hopefully if anything, all of these posts regarding Smockety’s blog post will just help raise even more awareness and compassion from other parents.

  3. Shannon Says:

    I’m leaving this comment on all the blogs I linked to and which haven’t yet cited it: SmockityFrocks issued a sincere apology today.

    http://www.smockityfrocks.com/2010/03/an-apology.html

  4. Melissa Says:

    Thank you Shannon, I’ll update the blog part to link that.

  5. Rachel Cohen-Rottenberg Says:

    So often when I read your posts, I see how divided you feel–about parenting, about autism, about social behavior, about what people think. I completely relate–as a parent and as an autistic person. But I’m finding, more and more, that I care less and less, especially concerning stimming. I have clamped down on stimming *all my life* and it has done me tremendous harm. Stimming is a natural, harmless way of self-regulating and who cares if other people find it weird? It works like nothing else to calm the senses. It’s better than chocolate. Seriously.

    I’m not changing. Let others grow in understanding of who I am. Let them grow in understanding of who your son is, and of what an awesome job you’re doing as a mom.

    Keep fighting, Mama, and never give up!

  6. Starla Dean Says:

    hi – you wrote about a netti pot for mold illness. can you email me at stjdean@yahoo.com and tell me what herbs youd use in the pot for that? thanks so much, starla dean

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