Divorce can be visceral and terrifying for most “regular” humans, but for parents with fragile children, the stakes go WAY up, and, as I’ve been separated from my husband of 10 years for the past three years (most people assume I’m divorced since I legally changed my name back) those fears simmer just below the surface for me all the time. It’s hard to talk about them, but I’ll try.
Chances are good that you’ve heard the statistics: Eighty percent of marriages of parents of children with autism end in divorce. For most people I know with special-needs kids, that’s a terrifying statistic. And most people can imagine it to be true, because it usually doesn’t take long to realize that autism (and other special needs) can do a real job on a marriage. Different people handle big events differently, and there’s no guarantee that you and your partner will handle things in a compatible way, starting with the diagnosis – if there is a diagnosis. Some really proactive parents get started addressing the issues even before a “qualified professional” tells them what those issues are. Often one parent sees the issues and jumps on them, if not right away, then as soon as he or she can wrap his or her head around it, while the other parent buries their head in the sand and denies the need to done anything – the autism equivalent of sticking your fingers in your ears and shouting, “I can’t hear you!”
It’s tough to have a serious conversation with someone who denies the reality you deal with on a daily basis. As a result, conversation often drops off. If you’re the action-oriented parent, chances are you get burnt out and exhausted and would like to share the burden of the difficulties: diet, therapy, supplements, etc. But the spouse doesn’t want to hear it. He or she just wants to go back to the way things were — which is, of course, impossible. That was me and my ex.
My husband thought we owed a tremendous debt to Bryce’s speech teacher for getting him to talk, even though I told him that therapy five days a week wasn’t really doing anything. There were days I had to cajole B-Boy for 20 minutes to get anything out of him at all. The only times we saw big gains were immediately after we added a biomedical treatment. When my ex expressed such appreciation for speech therapy, it was clear he wasn’t listening to me at all. I wasn’t sure why, but I got a hint later when he admitted that he was jealous of me, because I got to “save” Bryce. So maybe he was listening and the disconnect was really just a form of denial. Either way, it’s tough to be on the the receiving end.
Of course, not all marriages work this way, but it seems that a shocking number do go through some variation of this. Some survive it, others don’t. In general, communication is tremendously important in a healthy relationship. If you can’t share the task of “saving” your child, what can you share?
Another common issue in many marriages is the allocation of resources, in other words, money and time. Which areas in the family get the money and time first? Chances are, in a special-needs family, there is never enough money or time. That means that priorities have to be set. Conflict on those priorities is a major source of friction. This is one reason why you’ve got to keep the communication lines as open as you can. Parents who communicate with and appreciate each other are much more likely to hang tough for the ugly disagreements on where to apply their precious resources.
I’ve noticed that there’s one area that gets shafted for almost all special-needs parents: “together time,” also known as “date night.” Burnt-out folks find it difficult to plan fun activities for themselves and their partner. Spending money on it can also be difficult when you’re balancing it against this week’s organic food or speech therapy. But doesn’t it seem that marriages where the relationship is a top priority are more fun and more resilient? Chalk that up to another lesson learned.
My ex and I stopped spending any time together as his job got harder. He would send me off to the movies by myself sometimes. I’m sure he was thinking it was what I needed – to get “away.” But more than getting away, I needed to reconnect with him. Everything was easier when I had a partner I could share things with than when I didn’t. (Let’s face it, I never would have chosen to take on the challenges I had if I’d known I would be on my own with them.) It’s easier to go through hard times with someone when you know you and your relationship are a high priority. How do you let your partner know they are high priority? By investing your time and energy, even if there isn’t much in the way of money.
Personally, I don’t buy those stats. Among the Thinking Moms we have one divorced mom, two separated moms, and one never-married mom (who is more like a widow), and two of those (myself included) aren’t even dealing with autism. Out of 24, that’s not bad. I think fear of divorce is rampant, though. All of us know people who are staying where they are in a less than satisfactory relationship or marriage, because of the fear of going it alone. I think the biggest fear is how on earth do you make it financially on your own? That’s certainly my biggest fear. I didn’t have a paying job for many years as my high-needs kids were young. My ex was spending that time building his career. That makes him much more employable than I am, despite the fact that when we met we were doing similar work and not getting paid all that differently.
Then there’s the fear of having to do it all. Depending upon how you get along with your ex (if you have one), you may be alone at 100% of the IEP meetings and parent/teacher conferences (which, fortunately for me, are one and the same lately), do 100% of therapy appointments and school drop-offs/pick-ups, prepare 100% of the special-diet food, administer 100% of the supplements, and handle 100% of the sensory or PANDAS meltdowns. That’s a daunting prospect. And I’m not going to downplay it. It sucks! I get along very well with my ex, and he wasn’t working last year, so he did get to come to more conferences and do more school pick-ups than he would have otherwise, but he lives two hours away and that means he’s not exactly someone I can count on.
I think one of the biggest secret fears, though, is that the stress of divorce will end up being very, very hard on already fragile children. If you were already disagreeing on vaccination, therapies, supplements, and/or providers, divorce will amplify those differences. It’s one of the most difficult things in the world to trust your child to be alone with someone who seems to hate you. What happens if your ex is so pissed at you — and so used to not listening to you — that he or she takes your kids to get vaccinated the minute you’re not around?
Like I said, my ex and I get along very well, and he is a big supporter of what I do here, but even he got bullied into getting Bryce a DT shot in an ER last year. (I can hear your collective gasps in my head. Yeah, that was my reaction, too.) And, though my ex is generally supportive, he doesn’t do supplements beyond enzymes, and I can pretty much count on him plying the kids with sugar every other weekend. I don’t know how to mitigate this one. If you have a partner that flatly refuses to listen to you or take your concerns to heart, it’s a very real possibility that your child’s health will be in danger. My heart grieves for the children in these situations. The best I can say is don’t give up trying to communicate. My ex and I communicate much better now than we did the last year we were together. It can get better.
And lastly, I think, is the fear that if you split up you’ll be alone forever. Who is going to want to take on the challenge of a special-needs child or two or five? It is harder to find someone who is up for that challenge, but it is by no means impossible. It does require that you make an investment of time and energy in yourself, though. Depressed people who hate themselves don’t find partners, for good reason. Would you want to be with someone like that? I was lucky enough to find an absolutely awesome guy, who is also a special-needs dad.
You may also fear that you’ll hate being alone so much that you’ll fall for someone who isn’t good for your kids, and you may not recognize it until it’s too late. Lonely rebounding parents do this all the time. How do you make sure it doesn’t happen to you? I think not introducing your kids to someone until he or she has been in your life for at least a few months is a good first step. If you wonder if you should introduce them, then you probably shouldn’t. Your intuition is telling you something. Then, when you do introduce them, watch for red flags. At this point, it’s important to keep in mind that your kids are your top priority. They depend on you, and they are with you at least until they become adults. That’s a huge responsibility. Take it seriously. Don’t settle for someone who doesn’t take it as seriously you do.
One last thing: If divorce is inevitable, find ways to remind yourself to love. As they say in the movie Love Actually: “Love is all around.” It really is. All kinds of love: love for your parents, your child, your friends, and your siblings. Every bit of practice you get loving makes you better at it.
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