Sunday, January 25, 2015

Disability and Sexual Abuse: Why I Fear Death

I used to think 60 would be a good age to die.  I thought it would be best to leave this world before my bones started crackling and the days remaining were too unpredictable.  My children would be grown, I would have made my mark, and I could leave everything clean and tidy.  Then nearing 40 I started over, adding two beautiful children to my family.  The youngest was born with a disability.  Everything changed.

One of my biggest fears as a parent of a child with a disability is I may die early, leaving other loved ones that may or may not be up for such a task to care for my children.  And while this fear is very real, I'm sure I'm not alone in that I also spend so much time worrying about my child's health that I overlook my own health.

When parents of children who are disabled take days off work, we try to make sure we have plenty of sick or vacation hours remaining in case our child becomes seriously ill.  My daughter has Down syndrome and I never know what ugly illness may rear it's threatening head.  For example, we spent the first 2 months of 2014 with Clara in the hospital fighting pneumonia due to several viruses that marched into her system, one after the other.

She has been fighting respiratory issues most of the days of her life.  She had a heart catheterization to close her ASD before she was a year old because her doctor feared she was developing pulmonary hypertension.  She has had unexplained high platelet levels in her blood cells, and the list goes on and on. And so, especially for single parents like myself, it should come as no surprise that while we know we need to live forever, we also find it hard to make time to keep up with our own health.

But the fear of early death becomes even more compounded when the child has two parents, but one of those parents is a sex predator.  For the parent raising the child, who is not a sex predator, now not only do you fear you won't raise your child, you fear the sex offender parent may be awarded full custody upon your death.

This scenario has been given excessive play time in my head, which in and of itself I realize is not good for my own health.

Among those of us who parent children with disabilities it is common knowledge that a child with a disability is three times more likely to be sexually abused than a child without a disability.  Several organizations go even further and specify children with an intellectual disability are actually four times more likely to be sexually abused than children who are not disabled (see; and from The Arc,

Being thrown to the mercy of the courts is a scary situation if you've never been through it.  My ex was closing in on being awarded unsupervised visitation with our young children.  Then the police found child pornography on his computer.  Up until that point, the crime he was facing was video voyeurism against my then 16-year-old daughter.  It could have been argued that he was no threat to our children because at 16 my daughter, his step-child, was more physically mature like an adult; therefore, he couldn't be a pedophile.  But when the pornography was found, that argument was no longer valid,  He had been watching videos of baby girls, still in diapers, being raped.

For the next two and a half years life will be peaceful for us as he serves out his time, but the day will come soon when he will be out and he will fight me again for unsupervised visitation, which if that happens will eventually lead to some sort of shared custody; and while my attorney assures me that as a sex offender he cannot get unsupervised visitation, I have read news stories of sex offenders being awarded full custody of their daughters.  I can't bring myself to fully trust the courts. When he is released, my baby girl will be four years old, and most likely still in diapers.

I'm not saying I'm throwing in the towel on fighting to keep my children safe, but their fate is not in my hands.  My own fate is not in my hands.  If God fancies striking me down tomorrow the future for my little girl is filled with threats uglier than viruses and platelet levels.  Those things we can get past.  But sexual abuse, that stays with victims for a lifetime.

I have vowed that this year I will make time and keep up with all my needed doctor visits.  I've seen my gynecologist, I'm scheduled for a mammogram next month, and Friday at work we had a health screen to check our blood for everything that could possibly go wrong and be found in blood work.

I didn't receive a call on Saturday (the physician's assistant assured me she would call Saturday if they found anything), so I have some reassurance that for now I'll be around for a while to raise and protect my children.

Be sure you are taking care of yourself, too--for the sake of your children, disabled or not.

Sitting in the church lobby this morning.

Walking her baby.


Look at me!

My little doll. 

On the train last month.

Saturday, December 27, 2014

I Know

I am realizing that the comments of mostly acquaintances to Clara’s disability are making my skin thick, as I no longer cringe or heat up in anger.  I also realize I am hearing comments that I will be hearing for the rest of our lives.

The latest one came before the holiday break.  One of my coworkers had sent a Christmas poem to the entire office.  I appreciated her sentiment and so I sent her a warm reply thanking her for giving me reason to smile.  Her response back was to let me know she often thought of me and my Down syndrome child, and that she knew it must be hard on my family.  I was proud of myself as I politely informed her of what a joy Clara is and I told her I wished she could know her so she would understand her disability was in no way a burden to my family.

The people who say these things don't know.  As I stated a few months back in a newsletter article for our local Down syndrome organization, a developmental disability does not make life worse, it makes it different.  It seems that those of us raising children with special needs are the only people that really understand this.

I work in social services, and on a daily basis I interact with a slew of interesting people. Today I talked with someone who hugely impacted my day, and possibly my life. I was assisting this client over the phone and our exchange was taken off track as an intimate conversation was shared between two people who know.

Her daughter is in high school and has an intellectual disability.  She shared advice with me and she shared difficulties, such as not being able to work because there is no before and after school care for her daughter.  Her daughter is too old for child care centers but too young for adult day care.  I was seeing my future as she shared her dilemma, as I, too, am a single parent.

Then she talked about how fortunate we are and I sighed a breathe of relief.  I have at times wondered if Clara and I are in a honeymoon phase of disability, meaning horrors lie ahead.  Do I find beauty because my daughter isn't even quite two yet? Will I someday see her as a burden and long for freedom? I can't imagine either being true, yet this is a fear that sometimes bubbles to the surface.

Then my client said, “Maybe you know this already, and I didn't learn it until she (her daughter) was five, but we are blessed.” Tears streamed down my face as she continued, “It takes some people years to know it.”  I've known since Clara was born. Then she spoke my words, “Having a child with special needs only makes life different.  And it’s so beautiful. My daughter is beautiful.  I wish people knew.”

 She shared a story I'll never forget. A couple of years back one of the boys at the school her daughter attends had been voted king (of something; of what is irrelevant).  As king he was to choose a queen and he chose this client’s daughter. She stated he went on to be interviewed on one of the local news stations and he proudly revealed that by selecting her he knew that it would be an opportunity for her that she could remember for her lifetime. More recently, my client saw the young man at their local Special Olympics where he approached them and congratulated her daughter for winning an award. She pulled him aside to thank him for choosing her daughter as his queen a couple of years back, but she also told him, “In 40 years my daughter isn't going to remember who you are. But, in 40 years you will still remember her.”  She said, “That was a good thing that you did for my daughter but I believe the experience was even better for you and I think that someday you're going to realize that.”

I don't know why our society understands so little about people with disabilities when there are so many.  I know just as few years ago I, too, was in the dark.  But, I hope when I share stories of Clara, or my experiences with others, I hope that I enlighten someone—or at least peak their curiosity.  I'm living a wonderful life and I have four uniquely different children as evidence. I don't regret a single one of them, nor would I want them to be anyone else.

A good friend of mine told me not too long ago that Clara was lucky to have me for a mother, which I took as a compliment, and then she continued, “But, I can tell that you think you're the lucky one.” Again, I suppose I can take that last comment as a compliment and not try to over analyze it too much because, you know, I know I am the lucky one.

Happy holidays and I pray God blesses you.

Clara being loved.

Brothers on Christmas.

My sister at Christmas Eve service, Presbyterian style.

Legs around Clara.

Found in his stocking: a snowman on a stick.

2014 closes with my oldest daughter reaching adulthood.