The Label Makes a Difference

I think the initial shock of the word Autism has worn off.  It may have taken a few days, but a few days to process that kind of news is a pretty short time.  I think more of my anger is directed at the teachers for not saying it, not telling me what they suspect.  Even if they can’t diagnose, they know an awful lot more than I do and they know what autism looks like.  Even if they were later be wrong, I don’t think they would be as far off base as I was thinking ADHD. More

And the journey begins …

cc Ian Britton

Or maybe it’s just a new chapter in the journey.  Yeah, probably that.

I had a word dumped on me this week that leaves me shaken.  A word about my child that I didn’t expect to hear, certainly not in the conversation we were having.  A word that describes my child’s school’s understanding of him, which does not mesh with my understanding.

Autism.

How long?  How long have they thought he had autism?  Yes, I know he is different.  I know his behavior sets him apart. I had always thought–assumed–believed–it was ADHD.  Maybe severe ADHD.  But ADHD is a diagnosis I can handle. I can talk about ADHD.  I can understand ADHD.  I can handle ADHD so well that I’m the coordinator of our CHADD chapter.  No, ADHD doesn’t explain all of his struggles, but it is a start.

But autism?  That’s a whole different monster.

The guilt sets in.  Early detection and intervention is important.  It is key to living a good life, right?  To being able to function in a mainstream class, to not being so different that he can’t function in the world.  But this is not early detection.  He is five — FIVE, almost six.  And the doctors said when he was 2 that he doesn’t have autism.

But they also knew something was wrong.  And he’s been getting therapy for the past 4 1/2 years.

How long have they known?  How long have they been hiding this from me?  I feel betrayed.  I had thought we were on the same page, and it turns out we were not. At all.  They could hide behind words like “young child with a developmental delay.”  They could evaluate and not diagnose.  Because he is a young child and he has a developmental delay.

She used it so casually, as if it was something everybody accepted about him already.  It isn’t as a bad thing.  It just is.  She had no idea that the word–and its implications–were not put on him at home.

A diagnosis is not merely a set of symptoms.  A diagnosis is a word, a word that can change a viewpoint.

No wonder they were so impressed with how he behaves at school.  They have given him a word, and with it the expectations that follow from that word.  He is succeeding because he does not fall to those expectations.

 

A bit about me and this blog

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Hello!  Many of you visiting today are new here, so I’d like to formally introduce myself and my blog.  Relax, grab a cup of coffee, and try to catch your breath if you have children hanging off of you.

I live in St. Louis, Missouri.  South county, to be more specific.  I live with my husband Tom, and with Picasso, who is 5 and in Kindergarten, and Cassatt, who is 3 and started preschool this year.  That means I have two child-free mornings each week!  Mornings that go by all too fast with cleaning, errands, laundry, meetings, Bible study, and I try to fit some writing in there too.

I am active in a local MOPS group.  My time there is a chance to breathe.  Picasso is upset this year that he doesn’t get to go, and I am still adjusting to picking up only one child from childcare!  I am the fundraising chair for our MOPS group, which keeps me busy at the beginning of each semester (and during fundraising time, which is now.)

I am also heavily involved in CHADD (Children and Adults with ADHD); I am the coordinator of our local chapter.  So I am working hard to spread the word, and somewhat overwhelmed by how big and separated our city really is.  It’s amazing how much work goes into marketing!  Hats off to those who do it well on a small budget.

Once upon a time, I went to law school. I had my own law practice, where I practiced family law and advocated for families working through the IEP process at school.  My license is currently inactive, as my life is too busy to practice right now.  I do keep active with my advocacy work through CHADD, however.  For a while, I had a series on the Advocating for your Child on this blog.

For now, I write.  Most of my writing right now is short fiction, which you can read over at my other blog, Fiction as Life.  I have been published in MOPS’s Hello Darling blog, and have a poem that will be published in When Women Waken in early November.

IMG_20140715_084342This blog is a haphazard mix of posts.  If you stick around, you will find I am not very consistent with posts.  I have made a commitment recently to post more regularly, please help keep me on track with that!  I post everything from kitchen how-tos to posts about my family and my garden to advocacy posts.  I have posted a few times about Ferguson, which is very close to me and appeals to my yearnings for justice.  For the most part, however, I stay away from political posts.

Now you know about me, I would love to hear about you!  What are your hobbies?  What would you like to see more of on this blog?

Saturday Morning

The weekend stretches out before me like the ocean; a few minutes of sandy beach brushing against hours of uncharted waters.  The anticipatory feeling of the weekend stretching out before me, overflowing with possibilities.  Should I write? Sew? Read? Clean?  Maybe I can take the boys somewhere, William has been wanting to visit the Magic House.  We will go to church tomorrow morning, and I am teaching my Sunday School class solo for the first time.

A few weeks ago I started sewing a casserole carrier.  It sits, half-finished, on a shelf, waiting for me to cut the strap pieces.  I need this carrier as a way to keep dishes warm when I take them to MOPS.  Which reminds me, I signed up to bring a hot dish to my next meeting.  Does anyone have a good egg casserole recipe?

I have been insanely busy this past week with CHADD.  I am the coordinator this year and am trying to get people more active so that it will continue; I’m afraid if it doesn’t get more people in volunteer positions then it will die soon from leadership exhaustion.  And we need to get the word out about ADHD, so I am speaking with local professionals about our group.

Siblings at Birth? Prepare Them.

Mothering.com recently posted an article titled The Beauty of Siblings at Birth, basically talking about how wonderful it was to have her children in the room when the new baby came.  It sounds so cozy, such a great family moment, right?

Here’s my experience:

I went into labor at midnight.  I was 33 weeks along, no way were we going to call a sitter at that hour.  (I was determined to wait until a “respectable hour.”  Like 5:00.)  And we don’t have family in town, so Picasso went to the hospital with us.  He was 2 1/2 years old (and was, at the time, recovering from having his tonsils out).

Of course I wanted labor stopped.  But my body doesn’t work that way.  So I labored in the hospital.  For two hours (because it was 3 or so by the time we got there.)  Picasso was in the room with us, and I didn’t care.  I was in labor, someone else got to think about him.

I didn’t care until he said the words I’ll never forget, the moment that will forever be locked in my memory with the birth of my child.

“Mommy made a funny noise.” (followed by laughter.)

Yup, he got kicked out, right then and there.  I learned how wonderful nurses are at babysitting during an emergency.

All of the “good” sibling experiences people have described involved prepared siblings, mothers who thought about having their older children at the labor and what that would entail.  Mine? A child who didn’t understand the pain I was in and thought it was funny.

Next time, I would call the sitter at 2AM.

Cassatt’s Tentacles

First of all, it’s been a while since I’ve written in here.  I’m going to try to be better, really.

We’ve had some medical wolf-crying with Cassatt the past few weeks.  At least I think so.  A few weeks ago he went to the nurse at school because he was acting funny in the Rainbow Room.  It turns out he’s afraid of that room (which is a problem because that’s where they have indoor recess in the winter).  But we didn’t know that at the time, so he went to the nurse.  While in there, he put his head down for a few seconds, was playing with his lip and wouldn’t respond for a few seconds (less than 10).  They wanted me to take him to the doctor, who wanted me to see a neurologist and get an EEG.

Cassatt with his tentacles

The neurologist said it might have been a partial seizure.  I’m still not convinced.  Of course, I didn’t see it so I couldn’t describe it to her, but I think he was probably just scared and didn’t want to respond to people he didn’t know.

We had the EEG yesterday.   They attached electrodes to his head and measured his brain activity.  He really didn’t like the setup process, and was squirming and unhappy.  They wanted him to sleep, and they wanted to see him have a seizure.  Even though he was sleep deprived (we kept him up as late as possible the night before and woke him early that morning), he didn’t sleep during the EEG (although he fell asleep in the car on the short drive home).  And he didn’t have a seizure either.  I think it was much ado about nothing.

The other medical non-emergency is that he went to the nurse (again) on Monday.  He had a sore on his lip because he had fallen over the weekend; I didn’t even think about telling his teacher about it.  So they sent home a note to the class about hand-foot-mouth disease.  This poor kid has been to the nurse so many times that I’m starting to wonder whether  this is the right school for him.  We’ll see if he can have a week without going to the nurse again.

What’s on my menu?

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