Monday, January 30, 2012

The Santorum Effect: What Rick's showing the world about special needs parenting


Today, Rick Santorum returned to the campaign trail after taking a weekend absence to be with his 3-year-old, Bella, who had pneumonia. She made what he called a "miraculous turnaround." Still, Bella's health is a constant concern for the former Pennsylvania senator and his family. Bella has Trisomy 18, a genetic disorder that can cause abnormalities in the heart, brain, stomach and other organs.

Rick Santorum has come under fire for campaigning with a daughter who has such significant issues. "Her life is measured in days and weeks," he said at a dinner speech in October, going on to acknowledge how often he'd been on the road. "I feel like I wouldn't be a good dad if I wasn't out here fighting for a country that would see the dignity in her and every other child," he added. Santorum is opposed to health-care reform legislation, which he considers a threat to kids like Bella, even though the law's supporters note that it would help children with disabilities or illness because insurance companies will no longer be able to impose annual or lifetime limits on coverage.

Last month, when Christiane Amanpour interviewed him, she asked how he can justify continuing his campaign, given his low poll ratings and his daughter's situation. "Well, I don't worry about the polls," he told her. "I worry about what I'm trying to do to be the best father and best husband I can be."

Sarah Palin came under fire in 2008 for running for office with young kids, including Trig, who has Down syndrome. Nasties called Trig a "prop," and the same has been said of Bella. Yet Rick Santorum has zoomed the spotlight onto something many of us grapple with: having a work life and caring for a child with special needs.

The family/work conflict Santorum is facing is extreme, to be sure. He has a child with a rare and serious condition, and his job is trying to be our next president. And yet, his situation is common to many of us who work and have kids with special needs. Like Santorum, you are often torn between the two—and sometimes criticized for your choices.

I returned to my job as a magazine editor when Max was three and a half months old, with the agreement that I could work from home on Fridays. We hired a wonderful nanny. Of course I had major reservations about leaving Max; he'd had a stroke at birth, and he was at risk for all sorts of delays and problems. But I had a lineup of therapy sessions in place, including ones on Friday and Saturday. I thought it would be healthy for me to not be home all the time, given the extreme anxiety I had. I welcomed the distraction of work and the potential to feel in control of something, because I felt so helpless about making Max "better." Also, I liked my work. I had always planned to be back in the office after my maternity leave, and I didn't let Max's special needs derail me.

My parents were blatantly dubious about my decision. "Don't you want to take off more time to be with him and help him?" a close friend asked, her disapproval implicit. I was thrown. Yes, I wanted to help my son. Desperately. No, I did not think I had to be at home with him every weekday to do that. "I think I'll be a better mother if I work," I told her, and left it at that.

I worked full-time until Max was almost 7, when I got laid off. It was a welcome severance and I've stuck with freelance ever since. But I do not regret having worked when Max was younger. It was the right thing for me to do.

Rick Santorum feels that the right thing for him to do is campaign for the presidency. While I don't agree with his politics, I respect his decision. Santorum is showing the world that parents of kids with special needs are like any parents: We don't always sacrifice our work lives for the sake of our children, nor should we be expected to. Contrary to popular belief, we are not saints. Holding us to a higher standard of morality only makes us more likely to be denounced for making real-world choices.

As parents of kids with special needs, we sometimes face tougher predicaments than other moms and dads. Still, that doesn't give people the right to question our decisions—or our love for our children.

Photo: Campaign ad screen shot

32 comments:

  1. thank you for being brave enough to tackle hard issues like this!

    i am also a working mom and have a child with mild cerebral palsy. i feel bad enough about the working mom part; thankfully no one has asked me why i don't stay home given my son's special needs. like you, i like my job. thanks for this.

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  2. Agreeing with Amy.



    "health-care reform legislation, ... even though the law's supporters note that it would help children with disabilities or illness because insurance companies will no longer be able to impose annual or lifetime limits on coverage." Whoever is in control of medical care, if it is not a physician or the patient, and there are resource limits (and there are and will be) need only find other reasons to deny care/services. Or make the wait deathly.

    The recent cause célèbre Amelia would never be known if the 'panel' member deciding on organ donation had not given a blunt reason. They need only have said she did not qualify or the surgery was not indicated or some such other medical-ese.

    Here is a blog about another child with Trisomy 18:
    http://annabelgrace.blogspot.com/

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  3. I love all your posts, Ellen, but this one is one of my favorites.

    Of course this argument could be made for so many things when it comes to being a special needs parent.

    Why we have to be held to a different set of standards is beyond me.

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  4. People want to have it both ways. They want parents to stay at home toiling for their special needs child, but they also want as few people as possible on government assistance.

    Personally, I stayed home with my child, but that's just not an option for everyone. I couldn't have afforded a nanny unless I forked over most of my salary, and at that point, I figured why not just stay home? Also, my husband was a huge proponent of me being home and it has worked for us.

    I do, however, completely understand that every parent has to decide what it right for them. I was scared to DEATH of being Charlie sole advocate and carer. Like I said, we worked it out, but there was a lot of fear there in the beginning.

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  5. Thanks for posting, Ellen. I have a great deal,of respect for Santorum, and it bothers me when people assert that Bella (or Trig) are "props" for their politician parents. We parents of children with special needs can't seem to win, can we? Everything is an either/or in the minds of some people - either our lives are sad and tragic or we're selfish and insufferable. We can't just be parents who love their children and want the best for them.

    As for working, I quit when Sarah Kate was born, but it had a lot more to do with my company than with her. I never regretted it during her first few years, but intended to o back to work once she got a year of school under her belt. But of course you know the rest of the story - with 2009 came a recession and a surprise pregnancy with another special child. So it looks I'm in the SAHM gig for the long haul. :)

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  6. I volunteered to be laid off when I discovered I was pregnant with twins when my other son was one. It turned out to be needed when one of the twins ended up with extensive PVL after suffering loss of oxygen. When the twins were 15 months, a job landed in my lap and I had to take it since it was (1) 2009 and (2) months away from unemployment ending. After working for 5 months, I had to go 75% time (I'm an attorney so that meant 1400 billables) because of all the medical appts. I eventually (willingly with excitement) had to leave and work for a nonprofit without billables but it's still a struggle. BUT I get to help people access benefits that I myself struggled to get for my son. The job is rewarding, the parenting is rewarding, but it is still tough. Thanks for highlighting this issue.

    Julie Lewin

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  7. Totally. I was shocked to learn that I agreed with Santorum about something when I saw his campaign video about his daughter. Very touching and real.

    But, man, I don't see how he can say with a straight face that health care reform is DESPERATELY needed after being through the system like only a special needs parent has.

    www.outrageousfortune.net

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  8. Incredible post. I worked full time until my son was 10 months old and was lucky enough to have my grandmother move in to help. Then the therapy was so often I ended up quitting my job. I could have gone back to work when he was older but chose to stay home with my second child. Each situation is different.

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  9. Great post. I love Sarah Palin and Rick Santorum for being advocates of people with special needs. Remember when they were hidden, institutionalized, much more discriminated against? They love their precious children and all the world can see that.

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  10. Control of medical care reform is needed but what is on the books is not agreed upon as to whether it will be helpful to those with disabilities. (See my previous comment.)

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  11. As the parent of two boys, now youngmen with autism spectrum disorders, I can say that I chose to stay home and not go into an office. I will not say, I chose not to work, because you can rest assured I worked, harder at home than I ever did in an office.

    That being said, I find it incredulous that the parents of special needs children are required to give up the right of choice in raising their children. The idea of parenting, no matter what the situation is with your children, is to make sure that they are taken care of properly while you are not there. If you can do that and you want to go into an office, then do it. You do not stop being human because your child has a disability.

    By the way lets talk about all the parents of special needs children who actually have no choice but to "work" whether they want to or not. Either they are single parents or one income is not enough to support the family and quite frankly with the cost of medical care, therapies and educational supports, some parents need to work just to be able to afford the care their children need.

    Also the attacks on Sarah Palin had more to do with her being a woman, a conservative and the VP nominee than anything else. The nasties had to find something to denigrate her with.No one really picks on Santorum because he is male, there is a parent at home (traditional family)with Bella and everyone knows that he is not going to be President. If he gets on the ticket in some way, just wait though.

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  12. I am from Pennsylvania so that makes Santorum "mine". I was at a work party last week and met my city councilman and his wife. They went on and on about how they can find nothing redeemable about Santorum.

    I so disagree with them. He is a really good and caring father. That said if he gets on any ticket, I will fight for his opposition like there is no tomorrow. Just as I have done in previous elections. I don't agree with his positions. But I am fine with the way he parents.

    When Samuel was born I quit my job to stay home with him. I went crazy, got depressed, and had to find another job. Which I did running an inclusive play center. I could always bring my kids to work. : )

    Ellen this was a great piece. Thank you.

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  13. My husband was able to work from home when my kids were smaller. I left the house everyday to work for corporate america. It sucked sometimes (a LOT) but I LOVE my job and my employer provides health insurance for adult disabled children (meaning I will never ever ever quit). BUT, even if my husband's start up had done better, I still would never have been able to switch roles and be a SAHM because without the umbrella of group health, my daughter would have been uninsurable. Had I quit she would have ended up on the gov't roles.

    I know you were trying to avoid party politics, but without healthcare reform, people & parents are forced to stay in jobs that might have healthcare, entirely eliminates any family with any sort of diagnosis from even considering going out on their own & starting a new company, and forces those who aren't as lucky as I onto the Medicaid roles, which looks a heckuva lot more like socialized medicine than Obama's personal plans.

    Side note: Did you hear Romney's masterstroke? He completely re-framed MA's & Obama's "individual mandate" as "enforcing personal responsibility". I lean left, but that was genius.

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  14. I don't agree with his politics either and I think I'd have a hard time writing what you did which painted him in a slightly positive light in one particular facet. I applaud you for being so unbiased and for making a very solid point. I cherish my non-working adult time away because I am a SAHM of a special needs 4 year old and its challenging at best.

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  15. Oops, my ears are burning. I am one of those who has criticized Santorum for choosing to campaign for President when his daughter's "life is measured in days and weeks." I was a working parent (no choice there since I was a single mom). But there is a world of difference between normal work and running for President. Why would anyone choose to commit to such a grueling schedule that takes him away from home most of the time, when his daughter has such a limited life expectancy? Not to mention that fact that his wife must care for a medically fragile child and 6 other children while he is travelling the country.

    And he justifies it with that statement about "I wouldn't be a good dad if I wasn't out here fighting for a country that would see the dignity in her and every other child." Dignity? It goes all over me to hear him talk about dignity in light of the policies he advocates: cuts to Medicaid, supporting the right of insurance companies to deny coverage based on pre-existing conditions, etc. He seems not to understand that most families who have kids with special needs are not millionaires like he is.

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  16. I am not a special needs parent, but I think your post was so well thought out and so honest. I agree with your perspective. Being saintly (in any parenting issue -special needs or not), doesn't mean a better result will happen. A happy parents is usually a better parent. Moms are not born to stay home (so to speak). It's a choice (or not) like everything else. When my son went through a very difficult time (it seemed as if he could not hear and may have had autism and had major behavior issues) I bet it would have been better for everybody if I had not been home. Keeping it real.

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  17. Excellent post and interesting comments. I join those mothers who had no choice but to work. I realized that in order to build a profession I would have to return to school. This was a difficult decision since it meant a daily hour's commute. It required a family decision and I could not have done it without them.

    The result was that my son Billy, who has Down syndrome, could go with me in the summer and be involved in an excellent program. The other family members took on individual responsibilities (doctor's appointments, planning and cooking meals etc.) and grew into amazing, resourceful adults. All of us had homework and all of us made good grades!

    Billy learned to adjust to various situations and people and now, as a 56 year old, holds a job and is a responsible, resourceful citizen.

    Our whole family has profited from a joint decision.

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  18. Why is he dragging her to rallies where there are tons of people and lots of germs, then? I have heart abnormalities, like many children with T18 do, and even a cold can put you in the hospital. My mother was instructed not even to bring me to the mall until I was a toddler. Who knows where she picked up the pneumonia, but a campaign is exhausting even for a healthy adult, let alone a child who has compromised health.

    And whyyy was Trig Palin being brought to late-night events, also with tons of people screaming and making noise and also spreading illness, when he was four months old and couldn't possibly understand the significance? By all means, let him be visible, but not to an extent which could be detrimental to his health.

    I am sure that Palin and Santorum love their kids, and it's great that Santorum is taking time off the campaign right now, but I do worry that they are being cavalier with their kids' safety when they're out campaigning. That's one aspect I don't think you covered in this post.

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  19. Obviously this isn't the forum for health care debating, but I would like to offer my experiences as a mom of 10 year old Kate, who has mitochondrial cytosis and who has been dependent on blood transfusions, had a bone marrow transplant, multiple surgeries, months and months in ICU, is diabetic, uses a walker and other equipment, on and on.

    Our internet support group friends in the UK and Canada generally got the minimum amount of health care available, and were refused services we here take for granted because they weren't required to keep the child alive. Plus they generally waited long periods of time for routine care. The problem there isn't just that the govt won't PAY for it, but that because the govt runs the system, they are DENIED it, even if they wish to pay themselves. Several would come to the US for care.

    The medicare patients in the beds next to us got exactly the same care we got even with our great insurance. We would, however, sometimes get the "top of the line" things such as needles that lasted 3 days for our chelation therapy vs. daily change needles.

    I have a past career as a medical practice management consultant. The costs of filing claims and dealing with insurance is HUGE, including Medicare/aid. There's frequently 1 doc, 1 nurse, and 4 people running insurance. Crazy.

    In my opinion, health care reforms when the providers are providing the care to the same people who are paying it. Right now they provide to us but our employers, via insurance companies, pay. Substituting the govt for the insurance company changes nothing, except for removing your option to get another payer (even if you have to get another job).

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  20. Totally appreciate this post. I did go back to work after my son was born and stayed there after his CP was diagnosed. But for us, there wasn't much of a choice - cost of living in the northeast is too crazy for us to live on a single income. There is certainly some guilt, but my employer gives me incredible flex time options so that I can be present for a lot of his therapy, and we have recently found (through Care.com, I might add)the perfect nanny for my son - she brings such great ideas and tactics that I would never think of on my own. AND, while it's not perfect, I have pretty darn good insurance through my work, which as we all know is pretty much a necessity.
    There's no "golden" answer for any of us - or that works for all of us, we just do the best that we can.

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  21. Great post Ellen. I too went back to work when my ds was 3 months only 1 month after he came home from the hospital. I loved the independence and being more than just a Mom. I didn't know it at the time but I was suffering from post traumatic stress syndrome, which is is common for women that have children that are in the NICU for prolong periods of time. I couldn't say my son's name without crying so I had to quit my job after a month back. They offered me an additional 3 months leave of absence but my heart was a home and I knew that my son and I wouldn't recover without each other. But sometimes I feel my only identity is Daniel's Mom and would love to find something to make me feel complete as an individual. If only there was more time in the day...

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  22. I decided to stay home full time even before my twins (one with CP) were born. We decided my husband would focus on work and I would stay home. I don't think anyone has ever questioned his decision to work and travel, but I'm sure if I had decided to go back to work I would be judged harshly by some.

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  23. I totally agree with everything you said, Galen. I am NOT a fan of this man.

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  24. The cynical feminist in me assumes that the reason that Rick Santorum could do all that is because his wife stays at home. He's not the primary parent.

    He's also a man, so no one would give him crap about working a full-time job with a child with a disability at home.

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  25. Many years ago I lost a child in utero to Trisomy 18. They told me she would have had little chance of surviving beyond her teens and her life would have been extremely difficult. They said it was a fluke and not much chance of it happening again. Despite all of that, I would give anything to have her in my life for even a few minutes.
    As it stands,I had another child and she has a disability.She is by far the best thing that ever happened to me. I still struggle to return to work but I can't fault Mr. Santorum or any other parent of a child with special needs for doing so.
    I can't comment on US politics as I'm Canadian.What I do know is when my child was receiving care at a New York hospital,I was stunned to learn how much extra care she would receive if we lived in the US. That said, if your system does need to improve than I hope it does so. Perhaps a parent of a special needs child is the best one to bring attention to that need.

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  26. Thank you for this post! I never would have known you did not support Mr. Santorum's politics by the tone of your article. It is so refreshing that you can disagree with his stance, yet respect his decisions. Many of us need to learn that trait, as I have witnessed quite a few friendships come to an end over politics recently, even among those who should be supporting each other because of such similar life challenges (having children with disabilities). When my daughter with Trisomy 18 was born, I quit my job to care for her. Frankly, there was no other choice, as she needed constant care due to her medical issues, not to mention I hated my job and I would have lost my mind if I had to stay there! Twelve years later, however, I am considering taking a job again. Parenting is not black and white, and when you add a disability, the spectrum grows even larger! Thank you for your voice of reason, and for your insightful blog!

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  27. My mom worked when I was younger and continues to do so I think it's wonderful if I grew up knowing that she gave up her career because I had Cerebral Palsy I would feel SO GUILTY I am happy and proud that my mother continued to work even after I was diagnosed with Cerebral Palsy.

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  28. I am a speech pathologist and work in the public schools. I respect Santorum's right to make whatever parental decisions he feels are best, but I have to wonder about his positions on education. He made comments this weekend that would suggest that he believes the federal government should not be involved in education at all, which would suggest that he does not support IDEA. Without the federal special ed law, I fear many special needs children would be stuck out of the way in schools and their needs would most likely not be being met. He wants his daughter to be treated with dignity and respect and brought out for all to see. Does he not think that all special needs children deserve the same? It would be nice to think it would happen without the law, but I have my doubts.

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  29. I would give absolutely anything to be able to not work & spend more time taking care of my son & our family & incredibly disorganized mess of a house. I'm lucky that I work flex hours w/ half of my hours from home, when my son is in bed. However, b/c I work weird hours, I get a lot less done for the family when most people are free to do so.
    Fortunately, my family, the grandparents & friends all understand that I can't quit my job or work part-time. How would I afford my son's therapy? (or mortgage, little things like that) What about healthcare? Right now, my son is on my insurance through my work. If my husband added the two of us to his insurance, he'd pay tons more out of his paychecks. I really don't know how people do it.
    I think that w/ politicians, people don't think of it as a job that people do to support their families - it can be seen as a power trip, like trying to be a winner on American Idol, political version. So b/c it seems like a non-necessity, it seems like they shouldn't be doing it when they have a child who has larger needs.
    I honestly don't know where I stand on such things when it comes to politicians running for high office when their children are sick. Do they have to aim that high? Or can they settle for their current office to support their family? Should we have an opinion on their choices at all? I just know my own situation does not allow for anything but for my son to have two parents who work full-time, despite how much we might be able to do for him if we were wealthier, on only one paycheck.

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Thanks for sharing!



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