Here’s a happy story we could all use right about now. Jonny Hickey is an 8-year-old boy in the Atlanta area who has autism. Xena is a pit bull who was abused as a puppy and abandoned on the side of a road last September, severely emaciated near death. The Friends of Dekalb Animals rescue group found her, named her Xena The Warrior Puppy and nursed her back to health. Xena became a Facebook star, raising thousands of dollars to help other abused animals.
At a fundraiser, Xena ran over to a little boy—Jonny. He’d been a withdrawn child who didn’t speak much or interact with others. The two became fast friends and in March, his family adopted Xena. The dog has turned out to be the best therapy for Jonny, says his mom, Linda. As she wrote on Facebook:
I am certain God has everything to do with bringing Xena to my family…to Jonny. Jonny has a very limited vocabulary, which is growing every day…but since Xena came into our home, Jonny has not stopped talking. He talks to her all [the] way home from school, during homework, and afterwards he plays with her until dinner. Every day he gently touches her nose, wanting to put Band-Aids on her boo boo. He hugs her. He kisses her. He sings to her…and yells at her when she steals his toys. All this is music to this Mommy’s ears. Jonny has personal space issues as many children with autism have, and he doesn’t like anyone too close. So it brings tears to my eyes when I see Xena on his lap in the car with Jonny smiling, kissing and hugging her…. I pray that seeing Jonny may have made you realize that autism does not define these children. They have the same dreams we all have…they want to be accepted and loved…they want happiness.
Jonny and Xena made a video to help promote Autism Awareness Month. As he said, “I think we make a pretty perfect team to spread the word.”
Do puppy-love stories get any better than this? I don’t think so.
This last week has been a grueling one for a beautiful family, along with the momosphere. Gavin Leong, age 5 and 1/2, passed away. His mom, Kate Leong, writes the beloved blog Chasing Rainbows; it was a finalist for Parent’s annual Blog Awards. Gavin went into cardiac arrest last Wednesday following a seizure, and died on Sunday evening. The outpouring of love and support on Kate’s blog and Facebook has been tremendous. So many of us were wishing for the miracle and, when it became clear that Gavin wasn’t going to make it, we sent countless thousands of prayers and supportive messages.
I have experienced other tragedies —a friend’s untimely death, my father’s passing, my son’s stroke at birth—but never the death of a friend’s child. As I’ve struggled with despondency, bewilderment and anger, I’ve found comfort in some basic life truths:
Humans have amazing resiliency.
I never realized how much strength a parent could possess until I saw the photos Kate put on Facebook of her rocking Gavin to sleep in the hospital and holding him for the last time, and her blog posts about his final days. She had a choice: She could have melted into a private puddle of agony. She chose strength, the extreme kind. Just thinking of it will surely bolster others during hard times.
Out of bad can come good.
Kate and her husband did not hesitate to offer Gavin’s organs for donation. On the day he died, her 43rd birthday, Kate asked readers to participate in a project: Help someone out, share the message of Gavin’s story, pay it forward. She listed suggestions: Give old toys to a special needs classroom. Help a stranger unload groceries. Bring magazines to a local hospital for parents spending time there with a child. And many, many people took her up on her suggestion.
One person can change the world.
Gavin was so young, but his impact far surpassed his years. As Kate wrote in a post, ”If you didn’t know him or realize how he touched people’s lives, just look at the outpouring of comments and Facebook posts and blog posts about him. People have been inspired by him over the years—and continue to be inspired by him now—and I know in my heart, that, even in his death, that won’t change.”
When I was a pregnant 28-year old, I didn’t hesitate as my doctor offered a screening test for various genetic conditions. I figured it couldn’t hurt me or my baby, and that the information the test provided would most likely allow me to check a box off my mental list. I was hoping for reassurance that my child was and would be healthy, happy, and who I expected. As it happens, despite the fact that the prenatal tests suggested otherwise, our daughter was diagnosed with Down syndrome two hours after birth. Since that moment, I’ve spent a lot of time thinking about sticking out my arm for a blood draw eight years ago. In retrospect, I wish I had known how problematic my assumptions about prenatal testing were, so my hope now is to offer other women a chance to confront some myths surrounding prenatal testing:
Myth #1: Your doctor can tell you everything you need to know about prenatal testing.
Two hours after Penny was born, a pediatrician and a neonatologist told us that they suspected she had Down syndrome. I hardly heard their words, but later we received a packet of information that listed medical concerns for children with Down syndrome, and I read about her likelihood of developing celiac disease, childhood leukemia, intellectual delays, vision and hearing impairments. But the doctors couldn’t tell me much about what has proved to be far more important to our life as a family—Penny’s personality, the way she would fidget like her father and jump up and down when receiving a new book, just as I did when I was little. Doctors can provide medical information about the conditions that might be diagnosed through prenatal testing, but most doctors are unable to provide information about the social and emotional context for children with disabilities.
A study published in the American Journal of Medical Genetics demonstrated that doctors and genetic counselors value clinical information most when presenting a prenatal diagnosis, even though parents report valuing information that details the social context for Down syndrome. As numerous studies attest, what parents want and what doctors and counselors provide often differ. Expectant parents need more than medical knowledge when making decisions about their families.
Myth #2: The best thing for every pregnant woman is to pursue prenatal screening.
When I was pregnant with Marilee, my third child, I chose normal ultrasound exams and a fetal echocardiogram, but I declined all other prenatal tests. Because I had already given birth to one child with Down syndrome, there was a higher than usual chance that my other children could be born with Down syndrome, but I also felt confident that the testing we had pursued would give us all the information we needed in order to welcome her into the world.
The American College of Obstetricians and Gynecologists recommends that doctors offer prenatal screening tests to all pregnant women, regardless of age or family history. Once the offer has been made, the decision about what route to pursue is up to you. If you want the option of abortion in the case of a prenatal diagnosis, then you will probably choose screening which might lead to more invasive testing (an amniocentesis or corionic villa sampling). But if you don’t want the option of abortion, there are other factors to consider. Perhaps you would like this information so you can feel emotionally prepared. Perhaps you have other kids at home and might need to make different preparations if your baby might be in the hospital for a longer stay. Perhaps you are afraid that other people would put pressure on you to abort so you don’t want the information. Perhaps you suspect that this type of information would be difficult at any point but easier once the baby has been born.
Myth #3: Prenatal testing is just a guise for selective abortion.
Although at least 70% of American women who receive a prenatal diagnosis of Down syndrome choose to terminate their pregnancies, and even more terminate with diagnoses like anencephaly, Edward’s syndrome, and Patau syndrome, prenatal testing can serve as a way to prepare well for the birth of a baby with a disability. Mona Patel, for instance, wrote about the ways prenatal testing that identified Down syndrome allowed her to prepare for her son’s birth: “Knowing about the diagnosis gave me time to learn. We spoke with a genetic counselor and explored books and internet resources. We contacted people who had children with Down syndrome and eventually attended a local support group meeting.” Many women who have chosen to continue their pregnancies after a prenatal diagnosis are able to find emotional and social support while also preparing on a practical level during the later months of pregnancy.
Myth #4: You can predict the type of child you will have.
Ethicist Stanley Hauerwas once said, “The only difference between parents of kids with [intellectual disabilities] and other parents is they find out a whole lot sooner they didn’t get the kid they wanted.”
Prenatal testing offers a false sense that knowing the chromosome count of a baby can tell us something positive or negative about who that child will be. But every life that comes into this world does so with both limitations and possibilities. Every kid will be a burden on his or her parent. And every kid, no matter their limitations, can be a blessing.
When Penny was born, I had to confront my own false assumptions about prenatal testing, and, more importantly, about the child I thought I wanted to have in our family. Now I know that more advanced prenatal testing could have given me a diagnosis and offered me statistical probabilities about the medical and social supports our daughter would need. But I also know that even the most advanced prenatal testing would have offered me very little to predict the sorrows and joys of life with this particular little girl in this particular family. There’s no test for how much love our hearts can hold.
Parents of kids with special needs definitely benefit from breaks: For every hour of respite care received, moms and dads 0f children with autism were less stressed and had better marriages, reveals a new study. Published in the Journal of Autism and Developmental Disorders, the research came from 101 sets of parents polled around the country with kids ages 1 to 33. Parents reported that about 64 percent of kids spent time with a respite care provider, whether grandma, a sitter or someone from a community agency.
I’m honestly not sure they needed a study to show this—better to have taken that money and given those parents a night out! Like any parents, those who have kids with special needs need a break. Unlike other parents, we have particular stresses (well-documented ones) that make time away from the kids even more necessary and helpful. It is no surprise, really, that as humans and as parents in a relationship, we do better when we get time to ourselves to regroup, rejuvenate and just enjoy a meal where nobody is screeching, kick-kick-kicking the table or trying to make a break for the exit.
That said, if the results of the study could get more community agencies and public institutions to offer respite care—with policymakers pushing for funding—that would be rather awesome. There is not enough out there. When Max was a baby, we got at-home respite care via a program through our local Arc. Those Saturday nights out were lifesavers for us; we were so overwhelmed by the time and cost demands of Max’s therapies, and we were still grief-stricken. Eventually, that program had cutbacks and Max was no longer eligible.
It’s gotten increasingly hard to find respite programs (let alone ones where a sitter comes to our home), though Max still participates in a weekend daytime activity program, also through The Arc. Our gym has Parents Night Out; we used to be able to leave Max there, but when a head staffer informed us they would not be willing to help feed him, that went out the door (I know, I know: It oughta be illegal). I know of other parents whose churches offer respite services.
These days, we have a sitter who comes at least one Saturday night a month to watch the kids, if not more. My husband and I don’t just deserve this time. we need it. It’s like therapy, but the most fun kind there is.
The wonderful Jill Smokler, of Scary Mommy fame, has a super-funny new book out on April 9: Motherhood Comes Naturally (And Other Vicious Lies). Amongst the untruths she so bravely (and relatably!) reveals: Having kids keeps you young, the parent is in charge, going from two to three kids is a breeze, and pets make children more responsible.
Jill and her inspiration
Out of curiosity, I asked Jill to share some of her top truths about motherhood. What she had to say:
1) You will inevitably turn into your mother, at least in some way, shape or form. And usually not the way you would choose.
2) The one day you forget to check the pockets before doing laundry will be the day your child stuffs them with crayons or Play-doh.
3) Bunk beds are evil torture devices.
4) You will be forever changed: bladder, mind and soul.
5) Your young child will be happier with the box the new toy came in than the toy itself. Especially if you were really excited to see him or her opening it.
6) You will dream of the day you can drop your child—without tears—off at daycare or school, and then sob when he or she goes off without a fuss.
7) Kids pick up on much more than you expect them to, especially if you happen to quietly curse.
8) You will always regret buying toys at the Dollar Store.
9) There is no perfect mother, anywhere, ever.
Couldn’t agree more! To enter to win one of five $1000 prize packs to celebrate Jill’s book launch, click here.