I published this a few months ago, and it got some harsh feedback. For example:
There is absolutely nothing inspiring about this post. In fact, for mothers with really severe situations, this is borderline shaming. Stick to writing about subjects you know something about – or at the very least, properly research your topics. This is truly horrible. You have made a very vulnerable subset of single mothers feel even worse. You should remove this horribly inaccurate and insensitive post. For a certain subset of us, our kids are so severe, there is no sitter available. There are months on child psych wards. There are astronomical expenses. This post may reflect possibilities for the less severe special needs situations, but it’s actually offensive to minimize the situations you clearly know nothing about. Beyond offensive.
I took that to heart. After all, I don’t have a special needs child, and my knowledge of the subject is from the periphery. I asked this poster for more information about her situation, and why romance, sex and love is out of the question. Here is a summary of our exchange:
Me: Can you elaborate in a way that would want me to engage? I am all ears – really. I clearly have no personal experience with this. That is why I reached out to this community. I say the following with zero shaming, but simply sharing what I wonder: Objectively, we put a man on the moon. Smallpox was irradiated. Other, incredible human feats. People of all kinds of disabilities, challenges have found beautiful love and romance. Why are you prohibited from this? Here is where I’m having trouble understanding: Could you find, say, three hours per week, or every two weeks, to go on a date? Could one of those dates lead to love, companionship, a lover with a man whose life fits yours in a way that satisfies you both? Does romance have to mean full-time, traditional marriage- or something that works for both parties?
That being said, because of his disabilities, my life is unique. I will do my best to adequately describe our life. In order to do so I will need to share some graphic details. I made a commitment to him years ago that I would ALWAYS insist he is treated with dignity. No exceptions. I take this commitment very seriously.
My son has severe, nonverbal autism, debilitating obsessive compulsive disorder, bipolar mania, two inoperable brain tumors, severe epilepsy and possibly schizophrenia. He will never be able to speak, but he understands everything that is said. His receptive language is normal. When regulated, he can communicate with an iPad, yet he always makes his wants known, even without the iPad.
After 12 years of educational court battles, surgeries, child psych hospital stays (many), thousands of hours of therapies, consultations and treatments with physicians across the nation, I could no longer keep him at home. I had to place him in a residential facility two states away. The facility costs $354,000 per year and is paid for by the federal government.
Therefore, I travel to his city every third weekend and spend four days with my son. At Christmas and spring break I’m there for a week, Thanksgiving four days and he comes home for two weeks each June. Emotionally, he’s similar to a 4-year-old, so this distance is difficult. He adores his family, and depends greatly on my protection and care.
The difficult behaviors that accompany his various diagnoses are overwhelming. He has come so far, yet there’s only so much progress an individual can make with these chemical and neurological challenges. For instance, last year he began lashing out at individuals for no apparent reason. 2 staff members were treated for severe bites, 1 staff member for broken bones and I received stitches twice, lost the windshield of my car, and was covered in bruises over the course of one weekend. He and I ended up in a psych ward (he can’t stay without me per the hospitals) for a week. During this week we discovered he had a brutal case of hemorrhoids. They never bled, and he had no way of telling us, so we didn’t know. He ended up having surgery, and he immediately returned to his normal soon thereafter.
We had his seizures under control, then puberty started. Now we are adjusting seizure medications a few times a year, as his chemistry changes so frequently due to puberty. These changes typically require a week in the hospital.
Once he became so angry with himself at school he slammed his face against a nearby cabinet and knocked out 6 teeth and broke his jaw. That required 3 additional trips for me. Situations such as these occur at least annually.
Most people don’t understand this type of life, and I get that. I could have never imagined this prior to living it. This isn’t Down’s Syndrome – and I’m in no way minimizing those struggles – simply comparing the day to day volatility. Admittedly, I have gone to pity city a few times. But I never stayed there.
I worked for 20 years prior to having children. I had the career. I was on that path. I loved that path, and I would have never quit working, if possible. Since I quit working, I am not respected. People view me as a typical stay at home mom. While I don’t see anything wrong with a stay at home mom, apparently most do. Being type A, these opinions bothered me for quite awhile. I worked hard, emotionally, to stop caring about these opinions. Yet every once in awhile, a comment can still nail me. The majority of the time, I’m proud of my path, but it’s lonely being the only person who truly gets it.
I am blessed to have a few great girlfriends who “take me” when I’m available. They are incredible. They and my family help me a tremendous amount with my neurotypical daughter, so her life has consistency and value. My daughter is a strong, caring kid with a good life.
Would I like a relationship? Fuck yes!
Men my age want to start traveling – most of their kids are college age. I’m so limited here. I’m the only parent, and I have the contingent of my son’s impromptu care out-of-state.
No one wants my situation. No one.
I’m lucky. I have a few bucks, so I don’t have to work, although I’d love — for both the extra income and the companionship. I’m not giving up on work – but it will have to also be unique to fit into my life. Most people don’t respect my purpose, including prospective dates.
While I have a few bucks, I’m incredibly cautious with it. Especially with our current
administration. They are threatening every dime given to disabled individuals. Most people don’t realize that at age 22, the cost of a disabled person is 100% funded through Medicaid. For most, Medicaid means healthcare. For the disabled it’s healthcare, housing, etc. if the current administration is successful with their Medicaid plans, my son’s entire adult life will be on my dime. The current estimate of my son’s adult life is approximately a few million dollars. While I’m not looking for anyone else to supply this, it greatly affects what I’m willing to spend, share and it will most certainly affect my retirement age lifestyle. Want to see a man run really fast? Explain this to him!
I will never truly be done raising kids. Jimmy will always need me. Always.
I could go on dates. What I can’t do is find a lasting relationship. And honestly, I don’t blame anyone for avoiding my life. I am not a victim, and I am not miserable. However, I wouldn’t choose this path. I’m simply making my life the best it can possibly be, in spite of my circumstances. Just going on dates with no hope of a lasting relationship is not fun.
I suppose this blog post hit a nerve because it felt like more judgment. More unfair assumptions. I’m lonely. I’m so damn lonely I ache. I realize I probably wouldn’t choose someone in my position either, but that doesn’t make me feel better. My circumstances are no one’s fault – they simply are. It takes constant work to stay happy in the midst of this much loneliness, so for someone to imply I could somewhat easily have a relationship but choose not to – that smarts. It also felt like I once again found a group I enjoy, but because of my unique life, I don’t fit in. More loneliness. It’s not easy going through life alone – but I’m doing it and hopefully I’ll find a way to stay happy while doing it. I’m aware of my limitations, and I need to stay away from people who judge me. I simply don’t have the capacity for that anymore.
Me: Thank you so much for sharing your story. What you write is so beautiful. It is honest, heartbreaking, lovely, humble, shocking and universal. Yours is a story worth writing about, and I am honored you shared it with me. Thank you.
I stand by what I wrote. There is romantic love out there if you are open to it. Romantic love is not an elusive, precious commodity reserved only for the young and physically ‘perfect,’ with uncomplicated lives. Love is messy, complex, unpredictable. Now that your son lives in a facility, you have free time (a giant challenge for many moms in dating). You say you have sufficient money (again, critical challenge for, pretty much 99% of people in the world). You suggest that your age is a hinderance in romance – oldest self-limiting belief in the history of (wo)mankind. You have emotional demands that most people do not- though this subjective, as, perhaps, your bandwidth for emotional superheroism may (and sounds like!) be far higher than many people are able to deal with in an ‘normal’ everyday life.
Insanely, seemingly impossible things happen every single day. That there medical marvels mean your son is alive, and cared for, and that outrageously expensive care is paid for, that you are not bankrupt because of that care is goddamned fucking MIRACLE. That you are so insightful and gorgeous in your dealing with your family is no short of other-worldly. The notion that a kind, smart, sexy, lovely man would want to spend several evenings a week loving you is far, far less to ask of the world than the miracles than you live every single day.
Ultimately, what you believe becomes reality. You believed you could provide a good life for your very challenging son. You did. You believe when culture tells you that no good man will want you. And, so it is.
The original post that so set off this lovely mom is below.
Hey single moms, don’t google ‘date a single mom.’ Trust me, don’t.
Also: Don’t trust google. Because there is so much negative messaging out there when it comes to unmarried moms and romance: Only losers and pedophiles want to date you. You are a selfish whore if you take a moment away from your children to have a romantic life. You must get married ASAP to be a good role model for your children.
To all of which I say, HOGWASH!
I’m here to tell you: There are so many wonderful, loving, successful and attractive men who are open to if not actively interested in women who are moms. Honoring your romantic, sexual and emotional needs is a gift to your children, as you are modeling a healthy, full life, and relieving them of the burden of fulfilling your emotional needs. Sure, get married or otherwise partnered. But only if you really want to! Lord knows the nuclear family model didn’t work out so great for most people.
All the negative messaging around single mom dating is amplified, it seems, for single moms of special needs children. Here, I tread carefully because I am fortunate that my children are not special needs. After all, I get very much that there are real challenges of dating as a single mom, and those challenges are amplified, often, when your kids demand so much more of you than healthy kids. It is just a fact.
So when a mom posted this comment, I paused. Here is our conversation:
Mom: I admit I went for sole custody when I divorced, mostly because my son has non-verbal autism and can’t be shifted around from house to house constantly. My son is difficult at times. The ex chooses not to use visitation at all. It miffs me because I’d like a break now and then. I’ve made peace with never having a romantic relationship again. That’s impossible when you have a child with special needs. No one wants broken, old, fat, ugly, and damaged goods, but I’d like to be able to go out and see a movie once in a while. Such is life. One day it will be over and I’ll finally be rid of this misery.
Me: I appreciate your situation, though there is a wonderful guy (or 20!) out there for you – get out there!
Mom: That is not how life works. I appreciate you have a brand to uphold and an image that goes along with it, but you are doing a disservice by making proclamations like that. I do not know anyone in my situation who has ever found love again. Have a child with special needs makes you unmarketable to all but the worst sorts of leeches, abusers, and scum. I will not expose my child to that. Do not give people false hope. It’s morally wrong.
Yowch! I tossed it out to the lovelies (almost 5,000 of us!) on Millionaire Single Moms Facebook group, many of whom are moms to special needs children. Here is what they said:
Tiffany: “Broken, old, fat, ugly, and damaged goods.” She’s stuck in a victim place and until she can find some self love, yeah… it probably IS impossible. But not impossible because of her child, that’s just an outward challenge that’s easier to focus on. And she just isn’t feeling the normal rejection like many divorced women feel, that is multiplied as she is feeling it for her AND her son… and maybe some resentment toward her son, which compounds the guilt and pain, but if you say it out loud or even admit it to yourself, you’d confirm (falsely) what an awful mom/person you are. None of it is based in facts, but it feels so very real in the moment that it is so hard to step back. This mama needs some counseling and some support! I was raised with a special needs sister and my parents had to fight for so many of her services that allowed her to be more independent. It took both of them, so I can’t imagine how impossible it does feel to her! Sending love and encouragement that the right people will come into her life to help HER so she can find a way out of this darkness!
Amanda: I have a foster son with autism….I does make dating bit of a challenge.. My free time is bit harder to get. My ex does not take him. I get respite for him two times a month. I have had many guys not be interested when I tell about him.( Which i know is his loss) I find guys tend to think I need someone to save me or get freaked out by my responsibility. But I do disagree with the women that you won’t find love again. It will take more work to have someone else be a part of our lives, but not impossible.
Susan: I have a son with high functioning autism. I’m lucky enough to have an ex around who is kind and flexible and shows little desire to have a social life of his own. I also have a dream sitter. So I am more able than most to make time for this kind of thing.
For a long time I felt like this mama–unworthy of love. It took me a long time but I changed. I hope she can get the help she needs to see she is worthy too. She sounds really beaten down. Everyone should have someone to make them feel wanted and sexy. To help them out.
Jane: A friend of mine has a 13yo autistic child. She has been together with her man for almost 10 years. He’s amazing and treats the child as his own. The bio-father has nothing to do with the child.
Lana: I have four special needs kids and a boyfriend with zero kids ;)
Katherine: Yes love can be found. I’ve done it and seen it for others with special needs children. There are some wonderful men out there who are understanding and supportive. Having a special needs child doesn’t mean you live your life alone.
Ellie: I have a child with autism – he’s high functioning but can be extremely difficult and doesn’t exactly sleep well. If anything I’m that much slower in bringing ANYONE around – even female friends – because it is taxing on all relationships. But, I would say find a way to get out or she’s going to burn out. She needs time apart from the constant care of any child, more with a special needs one. And if a man is a good man, he will want to be there for her and the child and will try to learn about his needs.
Jess: I don’t have a child with special needs, but I am dating a man who has full custody of a special needs child. I adore him, and my kids adore him too. We make it work. When you are in a relationship with someone, you accept all the things that come with them.
My recommendation would be to put yourself out there in the dating world. Start at the beginning, date without bringing your child into the equation beyond, “yes, I have a child.” Find an excellent care provider so you can date. And then get out there.
Ruby: We all have those days of hopelessness, right? I catered a wedding of a beautiful couple; the bride’s son was on the spectrum. And I could see how much the groom cherished not only her, but her son as well. It’s totally possible to find love. Totally. It was good for me to see, for sure!!!
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Emma Johnson is a veteran money journalist, noted blogger, bestselling author and an host of the award-winning podcast, Like a Mother with Emma Johnson. A former Associated Press Financial Wire reporter and MSN Money columnist, Emma has written for the New York Times, Wall Street Journal, Forbes, Glamour, Oprah.com, U.S. News, Parenting, USA Today and others. Her #1 bestseller, The Kickass Single Mom (Penguin), was named to the New York Post’s ‘Must Read” list.
Emma regularly comments on issues of modern families, gender equality, divorce, sex and motherhood for outlets like CNN, Headline News, New York Times, Wall Street Journal, Fox & Friends, CNBC, NPR, TIME, MONEY, O, The Oprah Magazine and The Doctors. She was named Parents magazine’s “Best of the Web,” “Top 15 Personal Finance Podcasts” by U.S. News, and a “Most Eligible New Yorker” by New York Observer.
A popular speaker, Emma presented at the United Nations Summit for Gender Equality. Read more about Emma here.