Not autism

August 24th, 2017

I sat in on her testing at the psychologist’s request.  He explained what he was testing for, and why.

She aced every part of the test at the first or second opportunity.

What we have been battling since her earliest days are simply extra delays related to her Down syndrome.

Not autism.

She’s taking a lot longer than the average child with Down syndrome to master some skills.

She has a hard time maintaining eye contact, and she looks down nearly constantly, even when having her picture taken or riding in a vehicle.  I often remind her, “Verity, look up!  What do you see?”

Laura took these photos and told me later, “Mom, it is SO hard to get her to look at the camera!”

 

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I’ve been fighting her tendency to “space out” since she was a couple of months old.  When I learned that not all children with Down syndrome have this tendency, that’s when I began to suspect autism.

Now that she’s older, she has a strong tendency to withdraw, isolate herself in her room, turn on her CD player, and stim by dancing back and forth, rocking (which she knows she’s not allowed to do), squinting at a light, and often dangling a toy back and forth.  If she disappears from the scene, that’s invariably where we’ll find her.

She rarely engages in imaginative play independently of us or follows through on any independent age-appropriate activity other than getting a stack of books out and looking through them.

Here I had just encouraged her to “read” the book to Nathaniel.

 

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Her conversational skills are significantly more delayed than those of the average seven-year-old child with Down syndrome.

But…two and a half years ago, before beginning the neurodevelopmental program, her speech skills had regressed to one hundred percent echolalia.  She’s now able to communicate sufficiently on some basic levels.

If she thinks the bath water is too warm, rather than simultaneously melting down and attempting to climb out of the bathtub, she’ll say, “Whoa!  It’s too hot!”

She will tell us, “I need a drink.”  Today, when she was finished eating her lunch, she surprised me by asking, “May I please have birthday treats?”

A few months ago, she began asking for help for the first time and now does it regularly if another person is nearby.  “I need help?” she says.  Prior to gaining this skill, she would attempt a task but quickly give up when she’d run into an obstacle.  She still doesn’t seek out help if people are out of her line of vision.

And she now gets my attention to show me something for the first time in her life.  “Mom!  Look!  See it?”  This evening, she said to me, “Look.  I do it this way.”

Toileting came together for her about eight months ago.  She’s self-initiating, and accidents are rare.

She’s showing much more self-awareness over the past six months and along with that a little unprompted interest in what she’s wearing.  That’s something new for her.

 

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Her behavior has improved significantly from where it was two years ago.  She’s less likely to melt down at having to wait for a desired item or activity or at loud noises.  If she melts down, she regains her composure within a minute or two rather than staying inconsolable for forty-five minutes or an hour.

Her sensory issues are perhaps ninety percent resolved.  Formerly, they were life-altering; now, they’re a minor part of life.  She occasionally still has trouble with loud mechanical noises nearby.  She can cope with them calmly if they’re at a distance and we explain them to her.  She still hates loud emotional outbursts in close proximity to herself.  Not exactly compatible with toddler and preschooler brothers!  But tonight, she was in the same room with a little boy with special needs who randomly shouted in a very loud voice, and while it registered with her, she continued to play quietly.

She’s much more cooperative with unpleasant experiences than she used to be, experiences such as having dental x-rays taken or her teeth cleaned and checked!  It helps that her dentist has a cousin with Down syndrome back in India whom he loves; he is completely smitten with Verity’s sweetness and showers her with affirmation and praise for her perfect dental patient behavior.

 

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And tonight, when I took her to the two-hour school open house where she’ll be beginning first grade on Monday, she was unflappable throughout the experiences of walking crowded hallways with a loud voice speaking over the intercom, visiting her new classroom, meeting her gentle and soft-spoken new teacher and a few other students, waiting in line for food and eating in the noisy cafeteria, riding the school bus (yes, the regular bus), and of course, exploring the playground.  It’s hard to remember when she would scream panicked screams and struggle and fight to get away from noisy crowds of strangers.  In so many ways, she’s shown us that she’s ready for school, and we believe the experiences and routine are going to be good for her.

“I’m taller than you,” she said while climbing this rock wall.

That was a new one.  I wasn’t sure I’d heard her correctly.

“What did you say, Verity?”

“I’m taller than you.”

You’re certainly taller than I’d given you credit for, sweet Doodle.  And getting taller all the time.

 

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18 Responses to “Not autism”

  1. Tami Swaim says:

    I always like to share with people that regression is the biggest tell tale sign of autism. It’s always a game or two steps forward, three steps backwards. That’s what is so frustrating with autism. A skill seems mastered but then it’s lost type of thing. Seems to me that Verity has been steadily (perhaps slowly) moving forward. It doesn’t appear that she had reoccurring periods of regression. I agree that she seems ready for school and that going out to school looks like a good fit for her!!

  2. Julie says:

    I wonder if you could share why she isn’t allowed to rock? I can relate to her irritation with loud noise. I work in an office and when the mail room clerk is taping boxes shut in preparation for mailing, with one of those packing tape guns, the sound of that tape is such an assault on my senses. I almost always have to shut my office door when the taping starts.

  3. Susanna says:

    Good question, Julie! Any time our children come up with socially inappropriate behaviors, we work on addressing them in whichever way seems to work best for that individual child. When Verity sits and rocks, we redirect her to stand up and dance, or sometimes to jump, such as on the trampoline, which for her is a more physically challenging and socially acceptable activity that still provides her with the repetitive movement that she finds soothing. Because of her tendency to get “stuck” in repetitive behaviors, we intervene after a period of time to draw her into other activities.

  4. Kimberly Seutzinger says:

    We really must get Verity and Ellery together. They are exactly the same age and both going into 1st grade. Ellery also struggles with loud noises.

  5. Susanna says:

    Kim. Let’s do it!!!!

  6. Aurelia Dalek says:

    Might the looking down have something to do with her vision? I know that it can be a common thing for people who have outdated glasses prescriptions.

  7. Susanna says:

    Thanks for your comment, Aurelia! Verity receives regular vision exams and updated prescriptions from her pediatric ophthalmologist, so we’ve confirmed that it’s not a physiological problem, but a behavioral one. I’ve heard from enough other parents of children with Down syndrome to know that Verity isn’t the only one who has struggled with this, and to have hope that she’ll eventually grow out of it. There is a therapy that has potential to help, but it’s expensive, not covered by insurance, and very time-consuming. Her neuro-developmental program should also be helpful, but we are currently taking a break from that until we are again in a place where we can put enough time into it to justify the expense (also out of pocket).

  8. Taryl says:

    What huge progress! I am glad it isn’t autism you’re dealing with, but I know delays for any reasons can be frustrating. Just the sensory progress and lack of meltdowns, alone, is such blessed news though. Way to go, Verity!

  9. Emily Henwood says:

    I am a VERY long time TBOV reader but have never commented. It has been such a pleasure to watch Verity’s journey over the years and I hope she has a wonderful first day of school. Thank you for sharing your daughter’s progress. Adoption is virtually non- existent here in Australia, but you have inspired me to volunteer locally with young adults affected by T21.

  10. Nancy says:

    Yay, Verity! Very nice photo at the end of your post..looking right at you, Mom! Sorry everything seems to come harder for your beautiful little girl. You’ve both (all) worked hard to help her gain all these victories. I know sometimes hard won victories are some of the sweetest. Verity has an amazing family to love and teach and accept her for the little girl she is.

  11. Missy says:

    Wow! Going on the bus to school! I can’t believe she is so grown up. You are going to be so proud as you wave goodbye and sob. :)

  12. Missy, you certainly have the sobbing part right! Trying not to think about it so I can keep functioning!

  13. Cassandra says:

    The “I’m taller than you,” comment is so sophisticated – it takes a lot of cognition to put that thought together. It’s a world away from saying, “I tall.”

    Anyway, it doesn’t sound like the (lack) of a dx is going to change the way you manage things nor should it.

    You didn’t ask but…I wonder if her self soothing could’t have a place in her life? Like, not what we ,do with other ppl though it is ok in your own bedroom? I don’t know. Just a thought but we cognitively typical ppl have a whole arsenal of supposedly appropriate self soothing stuff we can do: search thru the bible at will, play piano, take a drive, bake cookies, call a friend to hash out a thought, select a book specific to our concern, ballroom dance, ride the tractor, go on amazon, write in a journal, yoga and so on; however, through no fault of her own, she’s got less of a tool box to work with.

    I say this as a person who hasn’t had to deal with this so I don’t really understand the full dynamic.

    Did she do K in your public school? If not, you must be overwhelmed with emotion thinking about your baby going through a school day. You’ve grown so much, Susanna, since bringing home Tommy. I’m proud of you. Proud that you didn’t give up on life. Impressed with the many ways you’ve allowed yourself to be humbled. Even more impressed that your willing to admit it.

  14. KMT says:

    Wow, Tami’s comment about regression just reinforces my belief that my oldest is autistic and misdiagnosed. Also, after learning that girls often present differently than boys and are often misdiagnosed, I’m more sure than ever.

    I hope that you find this diagnosis accurate. Her progress is very promising.

    My youngest also doesn’t look. It’s not quite like Verity’s since my daughter will look up for pictures. But, she doesn’t ever look at examples we are using to explain things to her or teach her. She has never looked at our faces in speech therapy to see what our mouths are doing, even when we tried very hard to get her to do so. Even now, at 5.5 yrs., her eyes might stay on me for a couple seconds, then she’s looking elsewhere.

    There’s still so much we just don’t know and, like you, I dig for answers, try everything I can find (usually end up inventing something myself), and keep at it ’til I drop.

  15. Jessica B. says:

    My younger sister had what seemed to be autism for a few years from when she was around 1-3 years old. She would rock/stare/zone out/become unresponsive. (not your average daydreaming) We were constantly saying her name over and over till we finally got her attention/made eye contact and then would say, “No rock.” The longer we waited to stop her, the harder it was to get her out of it…if we did nothing it seemed like it would never end. My mom would not go to bed till she knew she was asleep at night and made sure she was up before her every morning.
    We knew another family with a daughter that had the exact same symptoms who did not stop their daughter from rocking/zoning out and thought that my parents were being harsh for doing so. Their daughter now has very severe autism.
    It wasn’t easy staying on my sister’s case about it but it was worth it. Though the rocking stopped after 2 years of a whole lot of effort, she was very moody and would look constantly angry as she would after we stopped her from rocking until she was around 16. She began to understand that all the discipline was out of our love for her. She is now 19 and has become a wonderful, compassionate woman of God and we are so proud of her!

    So, whether it’s called autism at that point or not, trying to keep them from zoning out has clearly had a positive effect!

  16. Susanna says:

    Cassandra, you are right that she has coping mechanisms like everyone else, we just encourage the socially acceptable ones and discourage the others. She loves to swing on the swings, for instance.

    This is her first experience in school. Her first experience being without us at a place that’s not home. And she’s handling it really well!

  17. Cassandra says:

    You were kind to respond so politely:) I’m sure if I were you, people like me with such obvious suggestions, would be on my nerves. I totally get your long game goal here and I’d likely be doing the same thing – helping my child ease in to a sometimes unkind world.

    Parenting children with exceptional needs forces us to re-examine everything we once believed to be true and right. It’s a dynamic process.

    Can’t wait to see what adorable outfits she wears. You always dress her so cute.

  18. Susanna says:

    Cassandra, haha! I do get enormous enjoyment out of dressing my three younger girls nicely! Okay, just since you hinted, pictures to follow…

    Oh, and a P.S. to say I rarely mind people giving me unsolicited advice, because, you see, I still have a lot to learn, and I know it.

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