All morning, I have been on twitter, waiting to find out who John McCain would pick as his Vice Presidential running mate. Sarah Palin’s name was floated early, in advance of the announcement, and I checked out her bio on Wikipedia. One thing stuck out immediately for me- she has a baby, born in April 2008, now 5 months old, who has Down syndrome.Down Syndrome is also called Trisomy 21- the children have a third #21 chromosome, and it can cause a series of issues. From Wikipedia:
Individuals with Down syndrome tend to have a lower than average cognitive ability, often ranging from mild to moderate learning disabilities. A small number have severe to profound mental disability. The incidence of Down syndrome is estimated at 1 per 800 to 1,000 births, although these statistics are heavily influenced by the age of the mother. Other factors may also play a role.
Many of the common physical features of Down syndrome also appear in people with a standard set of chromosomes. They may include a single transverse palmar crease (a single instead of a double crease across one or both palms, also called the Simian crease), an almond shape to the eyes caused by an epicanthic fold of the eyelid, upslanting palpebral fissures, shorter limbs, poor muscle tone, a larger than normal space between the big and second toes, and protruding tongue. Health concerns for individuals with Down syndrome include a higher risk for congenital heart defects, gastroesophageal reflux disease, recurrent ear infections, obstructive sleep apnea, and thyroid dysfunctions.
Early childhood intervention, screening for common problems, medical treatment where indicated, a conducive family environment, and vocational training can improve the overall development of children with Down syndrome. Although some of the physical genetic limitations of Down syndrome cannot be overcome, education and proper care will improve quality of life.
In the “Learning disabilities world”, people are often oddly jealous of parents of down’s kids in comparison. This sounds really weird, right? How could that be? Well, parents who know their child has a disability like Down’s from birth, automatically often get hooked up with advocacy groups, help and information like The National Down Syndrome Society, National Association for Down Syndrome, National Down Syndrome Congress, and others.
For parents of kids with other cognitive and even mild learning disabilities, ranging from autism to ADHD and dyslexia, their child’s disability often comes as a surprise, several years after the child is born. Something seems off. You wonder whether or not it’s just your imagination. You have to be a detective, as well as assertive with practitioners to figure out what’s going on. Too frequently, if a Mom suspects something’s wrong, they also have to deal with the fact that the knee-jerk response from many pediatricians is “wait and see- you are being too nervous.” These disabilities are not immediately known and obvious, and often blind-side parents who have been assuming everything is just fine and dandy. This road into disability land is really rough for many people, especially for those who aren’t expecting it. But it isn’t easy for anyone, even those who know the road will be different.
Emily Perl Kingsley wrote a moving piece called “Welcome to Holland“ about her experience of having a child with Down’s Syndrome. Most of the moms I know whose children have any sort of issue feel very much the same way. The link above will take you to the piece, but I think it’s equally important to reprint it here for the purposes of this post:
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
Having a child who is different is a challenge. It takes lots of time. You go from doctor’s appointment to therapists to psychologists. You have IEP meetings with teachers and educators. You have a whole program of enrichment you need to do at home, to keep your child on track and make them successful and hopefully, eventually, independent.
This post is not supposed to be a giant pity party about the difficulties parents face when they have a child with a disability. There’s plenty of fun and joy and laughter, but let me not delude you for a moment to say that it is a heck of a lot of work and requires a heck of a lot of time. Then there’s the whole issue of how much siblings lose out when so much time is spent helping the child with a disability, but we’ll save that one for a different day.
While I will be one of the first people in line to be empathetic with Sarah Palin and the challenges she faces ahead of her with her son, I think she is deluding herself that she can be both a great mom to a child with a disability and the Vice President of the United States. Heck, most moms I know have enough problems being a mom, holding a job, handling homework, and volunteering with the PTA.
Having a job like Vice President basically is a 24 x 7 type of position. She will be required to sit in the Senate. She will have meetings all over the world. Yes, I have heard of nannies. But her son will require tons of care and attention, consistently, and especially during his early years, to ensure he develops to the maximum of his potential. And I worry that being Vice President means she will miss all of that, or leave it to her other children and/or caretakers to take her place.
So many times, it’s a mom’s observation of her child and their subtle behaviors that let you know what’s normal and what’s not. It helps clue professionals and therapists to possible treatments and underlying problems. There’s a story in Dr. William Sears’ book The Successful Child (p.40) about how one mom knew there was a problem with a new speech therapist’s perception of what her child needed and what was wrong, and it was only through observation and being able to explain how her child was at home, that the Mom could convince the speech therapist to try something new, and that seemed to make all the difference.
I am a firm believer, that whether you are a working mom or a stay at home mom, you need to be an active part in your child’s life and you need to know them well, in order to advocate well for them. You can’t outsource this responsibility to others- no one else has the same love and attachment for your child as you do. I am sure Palin’s husband may take over this role if she becomes Vice President, but he won’t be able to be the baby’s mom.
Sarah Palin faces a difficult and challenging and rewarding journey ahead with her children and family. And I have sincere doubts that both her job as a Mom to a child with a severe disability and her potential job as VP will get all the attention they deserve if she tries to do them both simultaneously.
Sarah Palin’s child is very young right now, and I don’t think she can fully appreciate the path that is laid out before her. If someone called and offered me the Vice Presidency, I would have a hard time saying no as well. It is a once in a lifetime, career opportunity. It could change the course of her life, and the life of our country and even the world. Even the nomination is important. This is an uncommon situation.
But I think it would be tragic to outsource her child for the sake of this position- a childhood is something that cannot be replayed or recaptured when it is convenient, or when the term is over. What kind of treatment and therapy this child gets over the next few years will help determine the course of the rest of his life- every expert says early intervention is key. Is this child’s future something that should be in play?
We will see how this all plays out. As someone who has children with relatively minor learning issues, who talks to parents who have kids with many more complex issues than mine, and who interviews experts in the field of learning and education, I can say I doubt they make a day long enough for Sarah Palin to be both Vice President of the United States and an involved mom of a child with a disability. And for all the heroics that she may be painted with for the next 67 days, for having 5 children, including one being deployed to Iraq as well as an infant with Down’s, and the host of other merit badges that support her selection, I honestly believe she cannot yet appreciate the challenges she will face with her son.
George Will has a son with Down Syndrome and wrote an interesting piece about it in Newsweek, wondering whether or not prenatal testing is leading too many women to choose to abort fetuses with Down Syndrome. I do not consider any of this a debate about abortion or genetic anomalies, or anything other than the amount of time and care involved in raising children with disabilities. There is no doubt that people with Down Syndrome can lead fine lives, but this also means having great care and loving, involved parents to make sure it happens.
Randy Alcorn also talks about his son with Down Syndrome here. Correction- this link is to an excerpt of the George Will Article in Newsweek, on Randy Alcorn’s website, and is not about Randy’s own family.
The National Down Syndrome Society talks about the need and importance of early intervention here. Some of the things a child with Down’s will need includes:
When should early intervention start?
Early Intervention should begin any time shortly after birth, and continue until the child reaches age three. The sooner early intervention begins, the better, however, it’s never too late to start. Once it is determined that your baby has Down Syndrome, you may contact your local early intervention specialist and arrange for an evaluation and assessment.
What is Early Intervention?
Based upon patterns of development, early intervention is a systematic program of physical therapy, exercise and activity designed to remedy developmental delays that may be experienced by children with Down syndrome. In many instances, the program is individualized to meet the specific needs of each child, and to help all infants and children reach growth milestones in every area of development. Early intervention helps in each of the four main areas of development: gross motor and fine motor skills, language, social development and self-help skills.