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What’s it like when one twin has special needs?

Twins Special Needs

Laura's incredibly adorable twins

I am most excited to welcome Laura Rossi Totten to Baby Squared today for my intermittent “Ropering” feature, in which I subject other twin parent bloggers to invasive questions about their personal lives.

I met Laura via some social media channel or another when it came to our mutual attention that 1.) We both have twins and 2.) We are both originally from Fairfield, Connecticut (hometown of John Mayer, Justin Long and the guy from the Geico commercials!) In fact, Laura’s younger sister was a year ahead of me in high school, and she was a good friend of the niece of my mom’s college roommate. So Laura and I are, like, practically sisters. And, therefore, I had no choice but to Roper her.

Also, I was very curious to know more about what it’s like to have one twin with special needs.

Laura is the mother of b/g twins, whom she writes about on her blog, My So-Called Sensory Life, named thusly because her son has Sensory Processing Disorder (SPD). She has been a book publishing and PR pro for more than twenty years, and now has her own business, Laura Rossi Public Relations. She was also a contributor to the recently published anthology Make Mine a Double: Why Women Like Us Like to Drink (Or not) and is a regular contributor on Moonfrye and Circle of Moms.

Laura Rossi Totten

Welcome to Baby Squared, Laura. First off: remind me how old your kids are?

They just turned 9 in January.  J is our daughter and M our son.  These 9 years have zoomed by for me!

And—I ask all of my guests this, because I’m such an upbeat lady—what is your favorite thing about having twins?

I have so many favorite things about having twins that it’s hard to name just one!  I think most of all I love the special connected relationship J and M share — a relationship they’ve had since the moment of conception. Imagine that? Always having someone (your twin) by your side literally and figuratively.

Nine years later, I think about how the two were nestled together in my belly and I can say with 100% confidence that they still are connected in a way that I’ll only experience as an outsider — with awe, reverence and pure joy.  I’m so glad they have one another.

Having twins is a challenge in and of itself; but you have an added challenge, with M and his sensory processing disorder. Can you tell me, first, a bit about what this disorder is, and how it affects your son, specifically?

Like most twins, J and M are fiercely competitive for my attention and always have been.  It started with who can cry louder and now it’s who can talk louder! I think you’ll agree that twins are always trying to “one up” each other as a way to get the spotlight and they do this more intensely than any singleton children I’ve ever seen. Twins crave the individual spotlight because they usually have to share it.

(I absolutely agree. Especially about the “who can talk louder” part. Oy.)

So you and your readers can imagine that raising twins when one has special needs is even more complicated.  M has Sensory Processing Disorder as well as some of the features of Asperger’s which is part of the Autism Spectrum.  He particularly struggles with social skills challenges.

Sensory processing disorder, or SPD, is a neurological disorder causing difficulties with taking in, processing and responding to sensory information about the environment and from within one’s own body. (Read more about SPD on Wikipedia.)

The good news is that we have a great team and support system for M and he’s constantly improving and showing incredible progress.

When did you realize that M might have issues?

We were aware something was not quite right in preschool, when the twins were around two-and-a-half. I had NEVER heard of SPD, though to be honest by that time I was slightly, secretly obsessive about looking for the signs of autism and/or autism related symptoms in M.”¨ And when we got the SPD diagnosis it was a relief but VERY confusing, scary, and new territory for us as new parents. We’re still exploring M’s neurological quirks, Autism, and some red flags, but the doctors are being cautious about any “adhesive” labels until he’s a little older.

Do you worry about the effect M’s challenges have on your daughter? I often feel guilty about “neglecting” one of my girls when the other is going through a particularly tough phase, and I would think that’s a constant issue for you (on a much larger scale, of course).

From the minute J and M arrived, I realized I would only be able to give each what they needed if I could clone myself!  Since that wasn’t an option, I committed to this simple philosophy: If I do my best every day, then so will the twins.

From an early age, I started “Special Time with Mom” for each child. This time can be anything; the only requirement is that I am alone with J or M. We can read a book, snuggle in bed, drive to an errand.  The “what” doesn’t matter—it’s the alone one-on-one time that does.

Of course, as a mom I am always aware that M’s issues affect his sister. They affect our entire family. I try to narrate situations so that they become teachable moments for J and I always highlight the positive for her. In fact, I started my blog My So-Called Sensory Life (www.mysocalledsensorylife.com) to celebrate the silver lining (the “gift”) we can find every day—especially on the tough days.

As a family, we have to anticipate, adjust, and plan so that we can meet the needs of both children. For M this means schedules and social stories; for J it means being mindful of her needs and how M’s special needs affect her. It’s a delicate dance. Our main strategy is to strive to underline the fact that J and M are individuals with their own needs, strengths, personalities and lives.

Do you think there are aspects of having a twin with special needs that are more complicated or difficult than having a special needs child with an older or younger sibling? I wonder if it challenges people’s expectations or assumptions about how twins “should” be or act.

That’s a great question, Jane! As a mom of twins, it’s hard not to compare J and M because they are the same age and so, of course, I unconsciously expect the same things from them. In many ways, M’s special needs have been a gift because his challenges underline the fact that J and M are different children.

And like any children—twins or siblings—they have their own internal blueprint and wiring that makes them unique and special. I do think that sometimes M wonders why things are harder for him then J; on the flip side, J also is aware that M and asks questions about M and why certain things are hard for him.

Most of all, the surprises of parenthood (which started the moment we found out we were having twins) have taught me that you can’t expect anything when you become a parent, but rather you learn to embrace and celebrate the unexpected and the gifts each child brings to your family.  I’m so blessed to have such incredible children and I’m thankful for my family every day. I would not change one thing.

Visit Laura’s blog, My So-Called Sensory Life. You can also find her on Twitter (@BookPRGirl), Facebook, and Pinterest.

 

DOUBLE TIME, my memoir of parenting twins and battling depression (among other things) is now available for pre-order!

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