Saturday, May 14, 2011

SNSS: Special Needs Squared

Our guest blogger today at Special Needs Sibling Saturdays, the OTHER Julia Roberts, has challenges few of us could imagine, no less face with the grace and tenacity that she has.

Julia's children are BOTH affected by the same rare genetic disorder (ARPKD), and her blog, Kidneys and Eyes, is named for the main physical manifestations of their condition.  

Julia has been blogging for much longer than most, documenting her son's and daughter's many struggles, from the big things like their kidney transplants to the small day-to-day challenges of life with immunosuppression, which can turn big at a moment's notice.

Besides this shared physical disability, their lives were further complicated when her son developed mental health troubles that have deeply impacted his relationship with his sister, and caused Julia no small number of sleepless nights.

Julia is also, like the rest of us, just a mom, loving her family and trying to keep them safe and happy. That in her case this task is Herculean, Sisyphean? Well, she is certainly the right mom for the job.  

But why take my word for it, read her own lovely words here:


Special Needs Squared – by Julia Roberts

When my son was nearly 3 and his sister was almost born into our family I wrote this long, heartfelt letter to him that our lives were about to change but that I loved my alone time with him until that point.

Tears streaming down my face. It was very dramatic.

I look back at that time and laugh a little bit. I didn’t know at the time that welcoming a girl into our family was the least of our worries.

Two days after she was born she was diagnosed with a rare kidney disease and three months later he was diagnosed with the same disease. In turn, she was diagnosed with the rare vision disorder we’d known he’d had since he was 12 months old causing low muscle tone and developmental delays.

Before I knew it, I was hauling them to 13+ therapy appointments a week, multiple doctors visits and ultrasounds and I began holding them down for the first of hundreds of blood draws. I refer to those first 6 months as “The Fog” because I don’t remember how we had our regular needs met as a family of four.

Our son is what some call strong willed, impulsive, energetic and for a time he was also aggressive and mean. We worked with a behaviorist for years; one who said our son was one of his “hardest” cases.

I found that oddly comforting; I wasn’t crazy for thinking he was hard to parent. He needed constant monitoring, he had behavior programs that needed frequent tweaking, and we had to work closely with his school on a behavior plan included in his IEP.

During this time, our challenging son went into kidney failure, started dialysis, had multiple invasive procedures including a botched surgery (he was awake but couldn’t move) and finally a kidney transplant a month after his 8th birthday.

Transplant medication (I believe) and PTSD brought on  complete shut down and within a year he was clinically depressed, suicidal and lashing out at anything and everything but especially his sister who was facing her own battle with kidney failure.

She was vulnerable and convenient. 

Managing their relationship was a constant struggle and all of my energy went into that and keeping him alive. I have clear memories of checking on him at night and wondering if he’d awoken to somehow hang himself off the side of his loft bed.

As our daughter slept in the next room, I was relieved her needs weren’t as consuming; which is a horrible thought when you are talking about your daughter’s kidney transplant.

While we were trying to manage the needs of her physical demise we were balancing his ever-increasing mental health needs. He particularly liked her to think he was going to hit her or push her and when she reacted loudly, would have the honest answer of “I didn’t hurt her.”

She became so conditioned to his threats that she could barely operate in our family without thinking he was going to harm her. For over a year, they couldn’t be left alone while he was in therapy, on suicide watch and sinking deeper into despair.

Meanwhile, our daughter’s kidney transplant and local and national media attention just brought out more PTSD symptoms in him. 

Three months after her kidney transplant, we found ourselves at a psychiatric hospital with him where I am happy to say we found the right doctor – one that wanted him to function in the world the best way medication would allow. A doctor who wasn’t afraid to treat a child already on several kidney-saving drugs.

Finally, now, a year and a half later my kids are typical siblings. She doesn’t feel like he is going to kill her and he is annoyed by more typical things besides her just being present; typical sibling irritants.

I hate feeling like I didn’t support her as much as I could have through her kidney transplant because of his needs. I reasoned she was emotionally more stable and while I tried to avoid it, I knew at the time she was the sacrificial lamb of the family because something had to give.

I harbor a lot of guilt about that still and feel like I am trying to make it up to her with extra attention even 18 months after her surgery and recovery.

While I do try to be thankful for each day; I can’t help feel like another crisis is just around the corner because with disease, delays and mental health issues, that is just how it is for our family.

I hope because they share the same disease and some of the same struggles that one day they will find comfort through their shared experiences.

I will always hope their sibship grows.


I am rarely speechless, but Julia's story leaves me so. To have children so profoundly challenged both physically and emotionally requires a mother of super-human proportions, and that Julia is.  

What they have been through as a family is nearly unimaginable to me, and yet, it is merely their story, and Julia is simply doing what she needs to do to keep her children alive and well.

Thank you, Julia, for sharing your family's amazing story with us.

So now that you have gotten a little of Julia here, you will want to go over to
Kidneys and Eyes for more. She has been blogging for so long, there's just so much terrific stuff over there. 

Be sure to read this moving post about Julia's nightly fears, this one about her son's finally being able to feel his feelings, and this lovely one about her daughter's success at swinging.

Taking care of her family is a full time job, one that anyone could feel proud of doing, and stop at that. But amazingly, Julia does so much more. 

Not only does Julia thoughtfully advocate for all special needs children on her own blog, she has also started an organization and website specifically for this: Support for Special Needs.

This is a WONDERFUL community that you should absolutely join if you are a parent of a child(ren) with special needs. And if you are going to BlogHer11, you should join their SN at BlogHer group, so we can find each other there, amid the madness.

Finally, definitely go follow Julia on Twitter, where she is both wise and funny. You can also follow
Support for Special Needs on Twitter, and "like" them on Facebook.  

Thank you, Julia, for being you and for all that you do for the Special Needs community.

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