In acceptance lieth peace

May 23rd, 2016

Singing with me on our way to her neurodevelopmental re-evaluation last week~

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There was a glimmer of a question in my mind within her first few months of life.  But I attributed it to her Down syndrome.  Remember, we had very little personal experience with people with Down syndrome before Verity.

My inner query never completely left me, though.  At various times, I would go and read voraciously on the subject.  I remember asking an experienced T21 mom friend whether her daughter exhibited certain specific traits and behaviors I saw in Verity.  When she answered, “No,” the question intensified within me.

Verity showed such tremendous promise during her first two and a half years.  When her developmental progress leveled off and then began to slide toward regression, I blamed myself.  I thought it was probably due to my unusually busy season of life and consequent inability to maintain the intensive one-on-one intervention I had given her during her first three years of life.  It’s always been a full time job to keep Verity engaged in the world around her; being unable to accomplish that and watching her regress brought me enormous mental anguish and self-blame.

But the more pronounced Verity’s difficulties (and they make quite a list, which I have added to the comment section of this post) have become over the past few years, and the more I’ve been able to observe others with plain ol’ Down syndrome, the more strongly I’ve suspected that she’s facing greater challenges than just her extra chromosome.

Last Thursday, I finally asked her neurodevelopmentalist straight out, “If we were going the typical route with Verity, in your opinion would she be diagnosed with autism spectrum disorder?”

“Absolutely yes,” she replied, confirming what I already knew.  “It’s less pronounced now than it was at her initial evaluation [February of 2015], but yes.  And you have done a fabulous job with her.  She’s doing so wonderfully well.”

Here’s an informative summary of the dual diagnosis of Down syndrome and autism.  Right now, we fall in the category of parents who are pursuing non-traditional solutions to help their children reach their personal best potential.  For us, it’s the Hope and a Future neurodevelopmental program augmented with the GemIIni Educational Systems.  These have already had a significant positive impact on Verity’s developmental progress, and we’re really just getting started.

To those of you who know Verity, especially if you also know other people with Down syndrome, this blog post may not come as a surprise.  You may feel like it makes sense.  A lot of the behavior you observe in her is autism, not Down syndrome.  While I have your ear, may I say “Thank you,” for the affection, patience, understanding, and acceptance you show to her?  We can’t imagine having a more supportive bunch of church family and friends.  You are a gift.

To those of you who don’t know Verity, this news may sadden you.  I myself would have been crushed by it several years ago.  Even a year ago, I was still saying, a bit tongue-in-cheek, “She doesn’t have autism spectrum disorder, she has ‘waiting for Mama’ disorder.”  She does respond markedly well to lots of purposeful one-to-one time with me in particular, but I didn’t cause her underlying challenges.  Yes, I’ve come a long way in accepting limitations, both mine and hers.

To us and to Verity, nothing has changed.  Verity is the same funny, quirky, sensitive, opinionated, affectionate, smart little person we have known all along.  We’ll keep working hard with her.  The programs we have chosen to help her are helping her.  We will doubtless try other interventions in the years to come.  She just carries another label now that may help others understand her better.

Nothing has changed…except…I might feel a bit more proud of how well she’s doing.

She has tremendous obstacles to overcome every moment of every day.

And she will overcome them.

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14 Responses to “In acceptance lieth peace”

  1. Deanna Rabe says:

    She’s a dear girl and we all love her! Not having any experience with Down’s before knowing Verity, I just assumed it was her Down’s but it does make sense. She is still just Verity – made just so by our loving God. She is just how He fashioned her.

  2. Tara says:

    I’ve been following your blog since the first time I heard about you, through family who live near you in PA. That was back when you were first bringing Katie home. We’ve been praying for your family, enjoying the pictures of all the dear kiddos, and sometimes crying for you, ever since. I have a special affection for people with Downs. None of our kids has Downs, but autism is something we have become better and better acquainted with. Each of our 4 children is on the spectrum. Some are more severely affected in day to day life than others, but each has challenges stemming from it that most “neurotypical” people can’t understand. All that to say, I know some of the emotions that come with a diagnosis like this, and will be praying for you in this regard now too! God never makes mistakes, and it will all be not just okay, but better than okay! Hugs.

  3. BethTomus says:

    You seem to have a great outlook on this. I find parents who have kids with special needs seem to take better to the news their child might have some other compounding diagnosis but at the end of the day, as you say, nothing has changed. She is who she has always been and now you have new tools to work with.

  4. AJ says:

    My precious friend, we are going to need to talk. Once again, we are on very similar roads…would love to eventually ask so many questions. I am praying for you.

  5. Tami Swaim says:

    I have goose bumps!! That quote you used as your title for your post was a treasured mantra for Elizabeth Elliot, who borrowed it from Amy Carmicheal…but that’s not what gave me goose bumps… What I find fascinating is this quote was my anchor when it became clear to me that Joel had autism. We were working hard learning sign language. At age four he was still not communicative and I feared he’d be nonverbal. Well, as you know Joel is not only taking but is slowly gaining expressive language skills. The hardest aspect of autism is the regression. By far the most frustration comes when you feel as though the child has taken a step forward but then for a time they can regress four steps back. It is this cycle that I must repeat to myself “in acceptance lies peace”. I can say this when either of my sons with autism hit accomplishments the joy is enough to bring tears to my eyes. Just recently Joel’s former occupational therapist and I were reminiscing and couldn’t even believe the progress he has made. When our second son was diagnosed with autism we were afraid that he would assume “oh, I’ll be just like my brother” and lose his own identity. We explained to them that everyone has their own unique personality and that doesn’t change with an autism diagnosis.

  6. Sandy Jones says:

    My 32 year old daughter has ds and while it was a long time ago that she was little (and was never properly diagnosed because of the times), we have always believed that autism is part of her ‘package’. To this day, we need to be aware that we may have to take steps to ‘pull her out of herself’. When she was little they said she had a bit of ocd…

    Just today I received a gift in the mail of a book on soapmaking. She opened it for me and got seriously excited. “you mean we can make our own soap????!!!!”. She absolutely cannot wait to work on this with me, and that’s just the kind of step that will help pull her out of herself!

    I know what you mean, Tami Swain, my girl is 32 and I still need to pay attention to when she needs a bit of balancing. No problem for the best teacher I ever could have had in this life, and she is still working her magic.

  7. Esther Paris says:

    I only got to see her for a short bit but she’s unlike any person I’ve met with ASD. I’m not arguing it, just trying to fit her puzzle piece into my life’s tapestry puzzle. On a related note, student J has made tremendous gains. For one, the word “NO” no longer causes tantrums, meltdowns, and things to be hurled across the room. For two, J can almost type name & address. Three: J genuinely exclaims ‘Good morning Esther!’ upon entering the classroom. All 3 & more make my heart sing. Verity is amazing & wonderful & beautiful and I wish I had a transporter so I could visit licketysplit any time I pleased. She too makes my heart sing. A singing heart is a very good thing.

  8. Susanna says:

    Esther, DS-ASD apparently manifests differently than ASD in a few ways.

    “Children with both Down syndrome and ASD showed less impairment on the Communication Domain in imitation, use of gestures and imitative social play than individuals with ASD but not Down syndrome. On the Reciprocal Social Interaction Domain, children with Down syndrome and ASD showed less impairment in eye gaze, social smiling, shared enjoyment, offering comfort, social overtures and response to other children’s social approaches. However, on the Restricted, Repetitive and Stereotyped Patterns of behavior there was only one difference. The children with Down syndrome and ASD showed a greater tendency to exhibit compulsions or rituals than the other children with ASD. Otherwise they showed the same behaviors as others with autism.”

    Parents of kids with DS-ASD often feel that their child doesn’t fit in either group, those with plain DS or those with plain ASD.

    Verity has always had a constant tendency to space out, a constant need to be pulled back in and engaged. Around 2 1/2 to 3, we began seeing more and more behaviors such as rocking, squinting at lights/poking one corner of her eye to get the squinty effect, dangling items in front of her face, looking down most of the time rather than upward and outward, a strong tendency to self-isolate, flapping her hands. She needs constant intervention to stop engaging in one or another of these behaviors.

    She has an extreme sensitivity to sudden loud noises (pain reaction), which looks like a temper tantrum, just a total meltdown. This has affected so much of her life. She reacts negatively to a sudden burst of applause when in a crowd, a sudden loud cough from someone nearby, the baby crying, power tools, the flushing of a public toilet or the sound of a hand dryer, and the list goes on and on.

    She seems much further behind socially than other kids her age with DS, and is falling further behind in communication skills.

    She was using echolalia almost exclusively last February when she began the ND program, and wasn’t using speech to communicate with us. She could repeat many words and do it articulately for a child with Ds, but she would growl or cry in frustration when she needed something. She wouldn’t try to make requests, even by pulling us to show us something. She never points at something unless instructed to. She never tried to show us things and would only rarely make comments of observation. After a few months of the ND program, she began improving in some of these areas. Now she is beginning to use words to ask for help, request items or activities, and make observations. She has asked for the potty three times in the last week and a half, after no requesting or self-initiation happening at all. Sunday she went outside and said, “It’s raining today.” Every time she uses words to communicate, it’s still a VERY big deal.

    Her independent play skills are severely delayed, and this also affects her quality of life in a big way. She needs constant one to one direct encouragement to occupy herself appropriately, play appropriately. As soon as we back off, she drops the activity and either dangles the book or toy or sets it down and wanders off. She doesn’t independently try to mimic grownup activity in an imaginative way at all, such as talking on the phone, cooking, driving, etc. Now she is just beginning to engage in a small amount of imaginative play on her own, mostly making her dolls and animals walk around and chattering to them. If she’s given a ball and a large space, she’ll now keep herself occupied for a period of time by throwing, rolling, and kicking the ball around the room and chasing after it. And we are now sometimes seeing her build a tower with verbal encouragement rather than dangling the building toys.

    She shows us amazing ability when she is receiving intense one-on-one direction, and she has responded to the ND and Gemiini programs with such measurable progress, that we have a lot of hope for her future. And yes, she is such a package of sweet sunshine!

  9. Cassandra says:

    Interesting how you suspected this early on. I had no idea until I read the link that apparently it is more common to show early signs with the dual diagnosis. Also very interesting was one of the abstracts on the GemIIni page – said brains of autists (think this is the accepted way to say that now) are larger than average. This doesn’t surprise me. I honestly wonder if people with autism are somehow more “evolved” and we neuro-typical people just don’t get it and so it’s easier to put them in the category of “other” even though it might be we who are cognitively deficient :).

    I’m very interested in hearing your experience with the video component. I watched their chinese language samples but wished there were more.

  10. sarah says:

    She’s my Favorite oh how i’d love her to meet her “very own mini me!” will send you a pic of our baby soon WE LOVE YOU

  11. Becky says:

    Sweet Verity has been observed using those singing skills at church! We love her just as she is….and as she will be. Only God knows what that means but we do know that she is who she is supposed to be. It is a delight to watch her grow and progress in every way. It blesses my heart to see her voluntarily come up beside me to receive and return a very quiet greeting. That wouldn’t have happened a year ago. :-)

  12. Esther Paris says:

    Wish I lived near you…

  13. Susanna says:

    Esther, me too! If I had the money, you’d be the one I’d pay to work with Verity when I can’t! You were AWESOME with her!!

  14. Aunt Erma says:

    Thanks for sharing your concerns, your insights, and your joys. I appreciate your honesty. You are wonderful parents and have a fantastic family. Verity, and every child in your family, is blessed to have you as parents. And I know you are blessed by each of them. I also appreciate the honesty with which your friend wrote about her mother. I’m always amazed by the orderliness of your home, both the physical and the atmosphere, but I’m glad you live by the principle of wanting the people in the family to be happy and creative first and foremost, with God at the helm of everything. Love you dearly.

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