Down Syndrome Awareness — Separation Anxiety With a [Twin] Twist on Transition Tools

Brian and Michael both had tonsillectomy/adenoidectomy surgery at the end of March. Both went to the ER for dehydration. Both were kept up well into the night being poked with needles, hooked up to IVs and x-rayed. Brian, however, had to stay in the hospital with Mommy for 3 days while Michael got to go home with Daddy. In the 7 days immediately following their surgery — including the surgery itself — the boys experienced physical pain and illness and extreme psychological stress from undergoing such a painful procedure, from their frightening and painful ER experience and… for Brian, the hospital stay… for Michael, the separation from Mommy during this physically and psychologically traumatic time. Despite undergoing the same procedure and nearly the same recovery, and despite being identical twins, each boy’s experience and how he handled it has been completely unique. Brian is “over it” unless he spies the white-coat of the MD or nurse coming towards him at which point his blood pressure actually skyrockets. (The medical term for this is white coat hypertension.) This never happened before the surgery. Brian had been the kid who rolled up his sleeves for the nurse to give him a shot. Not any more! But, other than that, you’d never know the he’s ever experienced a moment of stress in his life. Sadly, Michael is not having such an easy time getting past it. He’s suffering from separation anxiety over leaving Mommy or Mommy leaving him. Why? Because Michael was traumatized, as was Brian, but didn’t have his Mommy at a critical juncture to help him through it. And, because he’s a different kid!

Michael doesn’t want to go to school anymore where he loved going to school before the surgery. When we’re at home, he doesn’t want Mommy to be outside of the house when he’s inside (or vice verse). Mommy can’t go anywhere in the evening without Michael breaking down in a puddle of giant alligator tears, sitting by the door waiting for Mommy to come home. And, he wants Mommy to sit by his side even when he’s engrossed in movie watching or game playing. This is a HUGE change from his pre-surgery behavior.

So, how can we help Michael get over it? His teacher quoted research in favor of quickly removing Michael from me as soon as we arrived in the school lobby — despite his crying and holding on to me — in an effort to avoid prolonging his “pain”. After days and days of doing this, the teacher assured me that Michael had calmed down not 5 minutes later despite his continued distress during the process. This method is analogous with ripping the bandaid off the healed wound. Don’t prolong the pain, just rip it off quickly to get it over with. The key word here is healed. Michael’s wound is not healed. It is oozing psychological fear and pain and ripping the bandaid off quickly just makes him more afraid of bandaids and the person doing the ripping (school and teachers… like Brian’s white coat and doctors/nurses). This has been our experience exactly as Michael began first not wanting to go into the school atrium, then not wanting to get out of the car once we arrived. Then he began whining “home” as we neared the school’s location, and finally, not wanting to leave the house in the mornings saying in a sad and fearful tone, “Nooo. Home. Home!” as he held onto me tightly. I tried talking about how they would see all their friends and teachers and how they would play great games and take part in fun activities, naming names and naming games, to no avail. Brian was very excited while Michael whined pathetically, “No…. home…. home…. home….”

I was personally against the bandaid ripping method from the start for reasons mentioned above. And, my concerns were supported by Michael’s worsening stress. In my opinion, easing him through this transition was/is key to not causing more trauma and helping him to recover. Pulling from my undergraduate college degree in Psychology for Exceptional Children, I quoted research myself, explaining to the teacher that physical and psychological trauma registers in the brain of even the youngest infant and can negatively impact their behavior though the specific traumatic incident cannot be recalled by the sufferer. As such, I developed my own plan and discussed it with the teacher, therapists and our family EI Social Worker. All approved and were willing to give it a try.

First, where Michael was going and what he was doing when he got to school had to be better than hanging out with Mommy. So, getting Michael to school in time for morning playtime (rather than arriving during snack time) was part of the plan. Second, I decided to have the teacher/aide take only Brian into the classroom, leaving Michael alone with Mommy in the lobby for a few minutes longer. I kiss Brian goodbye, give him a hug, strap on his backpack and, like the mostly untraumatized little man he is (no white coats at school), he walks enthusiastically to their classroom to begin his day. Immediately after hugging and kissing Brian goodbye, I give Michael a hug and kiss and then figuratively ignore him while he waits for the teacher or aide to return. Quickly, Michael figured out that his time in the lobby was not nearly as much fun as his time in the classroom. He immediately recognized that his otherwise always-available, identical twin brother/built-in playmate was not with him. Suddenly, Michael found himself having to choose whether he wanted to spend alone time with Mommy or fun time with Brian and, inadvertently, his friends and teachers. Finally, when Michael’s teacher or aide comes back to collect him, still a bit unsure of his choice, looking back and forth between the teacher and Mommy, I say, “Oh Michael, look! Brian forgot his Woody Doll/toy truck/apple juice (fill in with Brian’s favorite anything for today and use something different each day lest he catch on). Can you bring this in to him?” Now, Michael can easily choose to be with his brother, go to the fun classroom and do something for Mommy all at once. Bringing Brian his toy is the excuse he needs to push him over the edge. He can get what he wants in so many ways by going to the classroom as compared to staying with Mommy who has suddenly and uncharacteristically become very boring. (LOL).

This method has worked so well that by the time the door closes behind Brian each morning, Michael has his backpack on and is banging on the door to be let in so he can run down the hall to join his brother. The teacher wanted to take them both in this morning, but I held Michael back. I don’t want to rush the process. I believe it’s too soon and I don’t want him to backslide! For instance, he still can’t say goodbye to me because, once reminded that we’ll be apart he’s holding on to me again. But, I know it’s just a matter of time before he insists on getting through that door before his brother… like he did pre-surgery…. pre-trauma!

Of course, this does not address the notion that, at some point, Brian and Michael may benefit from being in separate classes at school. For now, for us — this practice is unsupported as research done specifically studying Brian and Michael shows that they’re academically and developmentally on par with each other in every way, neither overshadowing the other, and that they actually champion each other and speak/participate more together than they do individually. Though separate classes was suggested for administrative reasons by their school’s representative as a point of consideration for September 09, a county professional in attendance at that CPSE meeting smartly cautioned the advisory team that separating Brian and Michael could NOT be undertaken lightly given they are identical twins with special needs who have predominantly not been separated (with the exception of therapies). He went on to say that you cannot just put them in separate classes without preparation as that separation could be very traumatic and could cause significant psychological damage. Noting that if separation was deemed absolutely necessary (unusual at the tender age of 4), it should be done gradually, hour-by-hour, day-by-day and week-by-week to avoid causing trauma. Smart man to recognize the potential for trauma well before we had such an experience with the boys’ surgery! That said, I’m convinced that separating them any time soon using the bandaid-ripping method would be absolutely unacceptable as it would surely cause both boys much stress. Thank God this man stood up for Brian and Michael and said what he did! I’m not sure the Committee members or school reps would have heard it quite as loud and clear coming from me.

Obviously, I’m worried about that future happenstance. But, if we’re all doing our jobs between now and September, separating them should be unnecessary… For now, anyway. I’m also hoping that our current solution for Michael’s separation anxiety has taught us all something about kinder, gentler ways to accomplish the task at hand and can also, perhaps, serve as a model to help ease them into what seems to be an eventually-inevitable separation at school.

But, I’m not going to worry about that now. I’m just taking one day at a time. And, today, Michael was very happy to leave me to give Brian his green matchbox pick-up truck… in the classroom full of kids and fun stuff down the hall.


About Maggie

I'm a stay-at-home mother of 3 children including a 15-year-old daughter, the Old Soul, and 11-year-old identical twin boys who've been blessed with an extra 21st chromosome (aka: Down Syndrome). I happily spend my time doing all that I can do -- breaking the proverbial box wide open -- to foster my children's development and then sharing what I learn with you through this blog.
This entry was posted in CPSE, evidenced-based practices, identical twins, overcoming trauma, parenting, research, separation anxiety, stress. Bookmark the permalink.

One Response to Down Syndrome Awareness — Separation Anxiety With a [Twin] Twist on Transition Tools

  1. SLKozul says:

    Monica – what an eye-opening post and what a great resolution that you had. Both of my girls have been extremely more sensative since they saw the man steal my purse – Iva especially. She is frightened when we are outside and strange men are nearby, I can't hang my purse on my chair if we got out to eat, and both of them will cry if I leave them in the car just to pop into the cleaners or whatnot – even if the doors are LOCKED. I don't want them to be paranoid – but it is a real fear – I have it too, but I was less traumatized, I wasn't the one buckled into a seat I couldn't get out of OR one where I couldn't see the one person who could keep me safe. SO I totally understand what you're feeling & doing and great job protecting your son!

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