Wednesday, September 16, 2009

How a kid with special needs affects your marriage: extreme honesty

This morning, I was trying to get up a flight of stairs at the train station only there was an elderly couple in front of me moving in slow-mo. As I trudged up behind them, going at their pace, I noticed how gently the husband was cupping his wife's elbow. Then they got to a landing, and as I darted around them I heard him say to her, in the sweetest way, "Are you tired, sweetheart? We can rest here a while."

That just about made me melt. And it made me a little wistful, too; I want a relationship that's just as tender. So often, though, ours is tension-filled. Dave and I love each other deeply. Yet there are so many details about Max to look after, so many ways we could be helping him do better, so many anxieties about his well-being, that at times they form a gray cloud hanging over our relationship.

These are the things Dave and I might go back and forth about during any given week:
...I know you don't want Max to wear his bib in public, but he needs to wear it or his shirt will get wet from the drool.
...If you keep feeding him everything, he's never going to learn to feed himself.
...Did you load the Dynavox with new pictures? No? We need to! That's his best way of communicating, and we're getting lazy about it.
...Uh-oh, why is Max suddenly so sleepy? Do you think it's a sign of seizures?
...Did you give him the seizure medication this morning?
...We have to order more seizure medication.
...Sigh, he's pretty upset, I'm not sure Max is going to let us stay for dinner at this restaurant, it's really noisy, maybe you'd better take him outside. OK? We'll take turns eating.
...The insurance company is saying they won't pay for any occupational therapy whatsoever, your turn to deal with them!
...We both really need to work on the toilet training, otherwise Max will never get there.
...I do not think it is good for Max to sit on the floor and push the same car back and forth and back and forth for a half hour, can we get him to do another activity?
...His right leg seems really tight. Do you think he's going to start needing Botox in his leg? Speaking of which, isn't he due for a visit to see if he needs more Botox in his hands?

And so on and so on.

I can honestly say that there have been times when the stress and fatigue have been so great I have snapped at Dave for no reason at all. I can honestly say there have been times when Dave's oh-I'll-let-her-handle-it attitude has gotten to me so much I could have cheerfully clonked him. I can honestly say that there have been times when the worries about Max have been so overwhelming that I have not felt like having sex. I can honestly say there have been times when I've looked at our wedding pictures and wondered what happened to that glowingly happy couple.

I can also honestly say that our marriage still rests on a base of mutual adoration; we hold hands when we walk down the street, kiss just because, plan date nights, find other places to do things when the kids take over our bed. We respect each other's strengths: I am the researcher, the booker of appointments, the scheduler, and Dave is Silly Doting Daddy who can get Max giggling with his crazy noises and funny games and fart talents. We compensate for each other's weaknesses: Dave yanks me back to reality when my fears get the best of me, I point out when he's in denial. We can make each other laugh, even when things get totally insane. And we have together experienced moments of amazing euphoria with Max, bursts of bliss only parents of a child with special needs could experience. Like when Max took his first few steps, the steps doctors told us he might never take. Like when Max does anything for the first time. Or when a doctor recently told us Max would probably be a mainstreamed adult when he grew up.

I do not think our marriage is stronger from raising a child with special needs. Nor do I think its roots are decaying and, like some big old oak tree, it's at risk of someday toppling over and crashing. What I know is that our marriage is solid. It's been through the worst of storms, it's survived, and while it may not be perfect it is good. We are happier together. We are tougher together. We are better for Max together. And there is love, there is always love.

Photo by forestlady


  1. First to comment!

    I really honestly believe that many of the issues that you see from parenting a disabled child are similar to what you'd have from just plain parenting. When you start parenting your decisions effect more than jut you--you can't just do what you feel like doing any more. The weight is heavier. And while Max may seem harder now I suspect that Sabrina will give him a run for the money when she enters Tweendom with it's makeup and boys and social pressures. Gah.

    Maybe I'm delusional?

    At our house, there's a clear division of labor on most things. I'm Charlie's cruise director--appointments, therapy and doctors, lessons, research. Sometimes that is a hard weight to hold up. But on the weekends Hubby helps a LOT and he and Charlie play and laugh and make ginormous messes. I have to remind myself that I can't make my husband parent like I do and that there's value in his way too.

  2. I said the exact thing to my husband last night - if you keep feeding T he'll never learn to do it on his own!
    A great post - I feel many of the same things. It's hard having a child with special needs, but I am so grateful that I have a man that is as dedicated as I am to the well-being of our child. Both children. We may not have the perfect marriage, but we are solid and we have love - just like you say!
    Thank you! Awesome post!

  3. It is a lot harder raising a kid w. sp needs than not. Mine is now 10 and is doing very very well. It has been a struggle. I have been on a mission. The years and therapies have built upon one another. It is nothing like raising a typical kid - the pressures, the urgency, the money, the therapies, the specialists, the regular doctors, the concerns that keep you up at night wondering - will he walk (yes), talk (yes), learn cross the midline (yes) make friends (yes), read (yes) learn to cross the street alone (almost). What about his future etc. Some of these things don't even cross the minds of others. We are adaptable and strong and there is a reason, I believe, my kid chose me! It is workable, doable, fulfilling, at times difficult but always incredible to see that this kid, who has things tougher than most, has a kind heart and a spirit that won't give up. Oh gosh, the dog just threw up. Great post.

  4. Great post Ellen...I could sit and write a long post, but I don't have the time.
    What you describe is what we all go through, special needs or not...the conversations are just different. Jonathan has kept Tony and I together...times got really rough when he came home from Iraq, and a few times afterwards. But the fact that I know there isn't a single person in this world that loves and adores my children as much as I do (okay, he may not love and adore them quite as much ;-) it is my husband. I wish we had date night like you do...but we do try to take time for eachother after the kids are in bed, and hopefully one day we will get to go on a date again.
    Fantastic fantastic fantastic post.

  5. WOW. I am so glad someone FINALLY posted about this.. I have thought it and wondered many a times, but didn't have the guts to post. I have to get ready for school but will come back and check it out in more detail. THANKS ELLEN!!

  6. You know, I might be nuts, but I've honestly never considered the effect that BC's special needs have had on our relationship. As our first child, it was our first foray into parenthood, so guess it's always just seemed pretty normal!

    Yes, for sure there's a lot of pressures that you wouldn't get with a child with no special needs, but I'll honestly say that my second son (now aged 2) probably gives us more cause for stress than BC. He's full of energy, incredibly strong willed and has terrible eczema that wakes him through the night.

    To me, that last factor is pretty critical - as long as we both get enough sleep, we seem to be able to handle pretty much anything.

    Without the sleep, things never go as smoothly.

    I think that one of our keys to success is that I make very few demands of my husband to get involved in the 'therapy' side of things. He does what he does, but is never as diligent as I am. I could let it bother me, but I don't because I value the importance of BC getting to do normal kid things and not always having to be worried about the therapeutic value of every single activity. Time with dad is just time with dad. Simple ;-). And I think I am mostly able to accept that because I made the decision after BC was born and it was clear we had quite a journey ahead of us, that I would not work full time and his therapy/care would be my full time role - at least until he gets to school on 2011.

    It will be 'interesting' (to put it mildly!) to see how things go for us when baby number 3 arrives in Jan!

  7. yeah... all these are familiar.

    I remember when Graham was an infant and Hubs had NOTHING to do with any aspect of his care, I asked him what he'd do if I dropped dead... He said he'd have to take Graham back to Children's to learn how to take care of him.

    It's much better now, the one thing we struggle with is Sign in Hubs hasn't bothered to learn much AT ALL. He talks to Graham as if he were a normal Hearing kid and it drives me BATTY. I snap 20 times a day as Graham says "HUH?" over and over...

    "He. can't. HEAR. YOU."


  8. Beautiful post! I love your authenticity! You are a beautiful mom and wonderful wife!

  9. I love seeing older people still in love. It gives me such hope.

    I'd say that while raising kids with special needs puts a lot of stress on your marriage, there are a lot of other things which do as well. Teens get pregnant or get addicted to drugs, jobs are lost (going through that now), homes are destroyed in fires and floods, and... shit happens. What makes special need parenting different is that it tends to be more long term. If you lose a job, it's for a few months or even a few years, not the next 50 years.

  10. I totally know what you're saying. Of course its a lesser degree here, but running to therapies and talking to insurance companies and making sure things are in place are wearing. Add my other 3 kids who need some attention and it makes for a pretty busy schedule. We really have to work on creating time for "us" as a couple as well as "us" as a family. (And I'm positive my hubby doesn't even know Piper's therapists' names!)

  11. Very well said! Marriage is hard work...PERIOD. Add a special needs child into the mix and boy do things get interesting!

    My husband stays home with my daughter right now, so he is handling all the therapies, appointments, etc. Does he do things the way I would do them? NO. Does that drive me crazy sometimes? YES. But there is a reason why we are both in Emily's life - we balance each other out. She benefits from both of us in different ways.

    I wouldn't trade him for anyone in the world! He loves me for me (even when I am not thrilled with myself!). He also makes me laugh like no one else can.

    We do have a date night once a month. I am thankful for that, but sometimes feel like it isn't enough. It is so easy to get caught up in the day to day "stuff" that we forget to make time for each other on a regular basis. We are both working on making that more of a priority.

  12. Such a great portrayal! I wish you the best of everything.

    I agree that being a special needs parent has extra risk factors. One biggie is that the extra energy and time required tends to be taken from our spouses. Also, one parent (usually mom) will often be so involved in the child's care and education that they live in a separate world...

    It takes so much effort. But it's doable. With so much work. But we're used to that, right?

    So nice to see someone write out real life.

  13. You said it beautifully! Raising these kids (all kids, really) takes a toll, but there are gifts, too.

  14. Your situation sounds very familiar to me, only I never got to the point of irritation. I guess that's because we adopted our oldest knowing full well that he had challenges (and he's actually doing way better than the "experts" predicted), and when the baby was born, that diagnosis just kind of sneaked up on us--and relative to most here, his compromise is mild.

    We didn't have any devastating surprises to deal with--we didn't have great expectations that were horribly dashed. We just had adjustments to make, some more profound than others.

    Believe me, even with the occasional fights and tension (which can happen over ANYTHING--even "Didn't you buy milk like I asked you to this morning?") it's way better having them than not. Trust me.

    I'd give my eyeteeth (that's an attractive picture) to be able to have a nice familial fight with the one I loved with all my heart. Those days, though, are in the past. It can suck having a sometimes-obtuse husband who doesn't seem to share your sense of urgency (or just doesn't show it because he wants to be a Manly Man), but it's way worse if they die unexpectedly and you have to manage all on your own (that's not fair or true, actually--I manage with the overwhelming and much appreciated support of my parents, who love us and will do anything for us and who carry, in their golden years, half my load, bless them--and we don't fight at all!!!).

    When you lose your best half in the blink of an eye, though, that's suckage of major proportions. Even the imperfect beats the absent, and looking back (hindsight is 20-20?) I don't see or remember too many imperfections...ain't it funny how that s#!!+ works.

  15. It sounds like you guys are doing great! We haven't even gotten to the point where we can find childcare for everyone so we can get out of the house by ourselves. And when we do, it costs an arm and a leg. Most of the time, we're cruising by each other, exhausted, getting stuff done that is just the minimum. We have the double whammy of having twins and a 2 year old and then a tragic event and then a special needs child as a result. How long will it take us to recover? Will we? I don't know, but we're both still here! Some respite definitely needed however! I know it's important, but if it sounds silly to say, organizing our respite seems like more work than its worth sometimes!

  16. Well, I have nothing to add because you pretty much described my marriage!

  17. Yeah, dito from me! You wrote the story of my life, and I can relate to what a lot of others said about lack of child care, exhaustion, etc. Our relationship is definitely not as spontaneous as it used to be. Example, last night my husband wanted to go to a concert. It would have been our first date since Emma was born, but she had ST out of town. I couldn't get back home in time, so he took a buddy from workon my ticket. Bummer!! Wow, timely post! Excellent, you took my thoughts and words. Of course, you articulated it much better than I could have.

  18. Ellen. thankyou so much for sharing this raw, honest post that yes most of us with children with additional needs can relate too. I was nodding along at everything you wrote. It hit a nerve with me too when you mentioned about the elderly couple as it reminds me with a neurotypical child you just assume they will follow the norms but with disability you just don;t know if you are ever going to be that "free" elderly couple as such.
    On another note, I am more than happy to make Max some of these and pop them in the post :
    they are really absorbent and look cool!
    if your hubby would be keen? My partner also has bib issues in public! :)
    Bron oxxoxo

  19. I believe ALL marriages have peaks and valleys. I believe special needs marriages have steeper mountains and deeper pit falls. I believe when a special needs couple was blessed with their child, they were also blessed with a life that was out of the ordinary.... saved from a life of mediocrity. It forces you - as a couple to dig to a deeper place within yourselves - remember who you are as individuals and as a couple, and you are forced to be strengthened to make it up the next steep hill. It is hard, it is fun, it is a bit of an extreme sport really. But just as I wouldn't trade my daughter for anything in the world, I also wouldn't trade the opportunity to grow within myself and grow as a couple with my amazing companion through this crazy ride. Our marriage has special needs, and making sure those needs are met is our call. We can't change it or wish it away. We have to get creative, be more patient, be more kind, remember why we fell in love, and enjoy those beautiful peaks when they come our way!

  20. Great post. it made me reflect on our marriage... we have found we are simply on the same page on pretty much everything so I too hadn't really considered this before.

    Do look at Bron's bandana's - much better than bibs. Also in winter we use scarves like these...‘glll’/
    If Max can wipe his own drool then sports wrist bands are a good option too.

    We are of the belief adversity doesn't make a marriage stronger or weaker, it merely magnifies the true state of the relationship.

  21. It is really heartening to know that a lot of you feel the same. Felicia, my heart went out to you when I read what you wrote. You are so right. I am sorry if this post upset you in any way. May I be so bold as to say, you are a wonderful person and you deserve to have love in your life again.

    Katy, I very nearly used the words "I'm Julie the Cruise Director" in our relationship! It's unbelievable how most of us women fill that role. WE ROCK! Bron, that cowboy bandana bib is bad-ass! I got some of those, Dave doesn't even like those, but that cowboy one could fly. And Gina, thanks for the advice on scarves, Max's chin gets chapped in the winter from the drool and these could help!

  22. great post. me and hubby sound like most here, up and down, but solid in the middle. :) right now we are having way more talks and concerns about our typically developing kid as she has entered the terrible twos and man is she terrible! we are struggling with how to discipline and give her attention we think she craves due to her brother's extra needs. drake seems easy right now. we barely talk about him! :)

  23. Ellen, I hope you didn't think I was upset, because I wasn't. I was just running my big fat loud mouth like I always do!

    I'm no saint, and I am not above having a fine little pity party for myself every so often, but then I pick myself up and go on. Don't we all? There's nothing wrong with doing that every so often, either--it's an underrated activity, and can serve as a sanity-maintaining device when used judiciously (when overused, that's another story--but rationed, it's a restorative!).

    We all need to keep telling ourselves that Beaver Cleaver's momma was NOT REAL, after all! And neither was his daddy! Real life isn't a perfect house where polite, well-scrubbed kids eat their dinner off the best china and mom does the dusting in pearls and leaves the "discipline" to Ward (in the den, of course, blowing his pipe smoke at Wally and the Beav while he makes his pronouncements), it's spilled milk, unvacuumed carpets, kids that are not perfect in every way, and farts that stink! It's real, in short--not fake, not a sitcom, and plenty messy at times.

    All in all, though, even when the strains and frustrations are great, I just try to remind myself: Life Is Good. It beats the alternative, that's for sure! I try to live in the Here and Now as much as I can (I don't always succeed, of course), and not worry overmuch about yesterday or tomorrow. Worrying doesn't change things, and it just puts more lines on the old forehead!

  24. You are very blessed to have a husband who loves both you and Max very much. After my daughter Sara was born and diagnosed with CP and a seizure disorder, her father rejected her and believed that she was a punishment from God. We divorced and I was left alone to raise my beautiful daughter. My Sara is 22 now, and still to this very day her dad's insane beliefs remain the same. Faith and hope will guide both of you, but love will see you through.

  25. Max is very blessed to have two parents who love each other and him! Thank you for this post. This is one of the things I worried about before Noah came home and REALLY worry about as we are in process to Jeremiah. Jeremiah is much more severly special needs and so I do worry how will that affect us. I loved reading this and it did give me hope! Thanks for being so honest!


  26. I am glad I saw this post and these comments. I dpon't think I would say that having a special needs child has made us stonger as a couple. I think I often feel a desire to lambast the man for his lack of energy. Maybe, like some of these commenters, he provides the quiet accepting love that my kids need as a counterpart to what I provide, where I talk to the helathy three year old while I simulatneously do PT, then OT, then regular play with my one year old with CP. And wondering why Daddy is dowsntairs playing video games, again. I will try to use these remarks to help me see the positives . . . but I don't know.

  27. Beautiful...I"ve had these same feelings for years. But have never been able to put them to words.

    Thank you, for knowing.

  28. As a mother of a 19 year old son with severe anxiety and depression, I KNOW how having a special needs child affects a marriage. Even though my son's disability isn't obvious to most people, it is a life threatening disorder and has caused so much stress and sadness in our family that I can totally relate to what you're saying. And the hospital bills, doctor appointments, medication worries, etc. all apply as well. Thank you for putting my feelings into words. Great post!

  29. I appreciate your honesty. My husband and I have talked about this and wondered "Could we handle it?" We are thinking about added another child to our family (we have two healthy boys) there is no guarantee we'd have another healthy child. Haveing a child with special needs would change our family so much and change our childrens lives....we just don't know if we could do it. So we wait until life or God sends us the answer...

  30. I was glad to read your blog. We were just talking about this ourselves the other day. We've been married almost 30 years and even though we have a strong marriage in a lot of ways, I wish it were different. It makes me sad what we don't have and haven't really had time to cultivate. Several people have said just what I would say. Special needs children don't necessarily make your marriage stronger, but they bring things to your life that change you in great ways. Maybe they're things you would never choose, but you deal with them and then become thankful that you had the chance to grow. We've learned that usually when one of us is discouraged and have had enough, the other is usually okay enough to take over. That helps a lot - and it's something we've verbalized between us.

    One poster commented on how it can change your family and other children. We worried about this for years while our children were growing up. But now that the kids are grown, they have a depth that they would not otherwise have. They have wisdom, experience, and compassion that many older adults just don't get. So even they have become thankful for what we all went through for years. As we've adopted more young children in the past couple of years, I'm not so afraid of what special needs means to our family and marriage - it will make us all grow.

    I think the way my husband and I have made it work is that we have common goals. With our family, with raising our children, with God. For reasons I won't go into, there have been very few years since we began our family where we've been able to go out alone together. When we've been able to do that, it has strengthened our marriage. But even now, that is rarely possible and it makes things harder. I personally have found that having a special needs child has sometimes made me lonely and feel isolated - esp. with the special need we deal with. This is true in our marriage as well, esp. when we are at odds about how to deal with a situation. Basically, though, we just look at our life and the needs of the kids and go with what is needed at the time. I have to remember to not just give up on having a better relationship - that it's worth the effort to keep trying. I do encourage people to find someone who understands and can give respite care occasionally. Whether it's for a week, a weekend, or even an evening. It's amazing what a difference that makes in your marriage. (We've had our special needs child since he was 3 - he is now 22 and it continues - it's just different. Better in some ways, worse in others - but it still has it's effect on our marriage.)

    I hope this doesn't come across as too negative, but I was going with the original writer about "extreme honesty"! And, as a lot of people are dealing with this issue with younger special needs children, I guess my purpose for writing is to encourage you not to do what we did - not to just be so caught up in living and surviving the challenges of everyday that without realizing it, you either let your stresses come between you or you just end up living separate lives (sometimes this can begin out of necessity and you just continue), with your kids being the common denominator between you.

    Thanks for bringing up this great topic. It's good to be aware of it - otherwise you can wake up one day and realize you've been married for 30 years - and wonder how you go about changing so many years worth of habits?

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  32. Awesome post. We have three children with special needs and you expressed a lot of how I feel. Your Max sounds like an amazing boy!

  33. My wife Debbie and I have a 6 month old son (Ethan) with special needs - he has osteogenesis imperfecta, a brittle bone disease which causes his bones to fracture easily. He is our first (after 2 miscarriages, and fertility treatments for 2 years in trying to get pregnant - we finally did with Ethan) and taking care of him has definitely been taking a toll on our marriage - I don't know if it's more that he doesn't sleep through the night, leaving Debbie chronically sleep deprived or his condition which makes it hard for us to just trust anyone to take care of him - it took months for Debbie to even trust me or her own mother or sister in handling him let alone anyone else.
    She is a stay at home mom now(dropped out of law school to take care of Ethan), and I work as a family physician. Still, I make it a point to be very involved in Ethan's care - changing his diapers, feeding him, playing with him, but sometimes I think that my way of doing things is not the way Debbie would do it so we get into fights about that. It took me months to even convince her to get some help (have her sister help out clean and take care of Ethan 3-4 days a week)and we agreed to this to make it easier on her - although her sister/family lives 2 hours away - but I don't know if it's just because of her sleep deprivation or what, but we still continue to get into the same fights over and over. My family lives too far away to help, and even if they offered, Debbie doesn't trust them to help - they just stress her out too much - so it's pretty much just her and me in this thing.
    I feel am pretty involved in my son's care(going with him and Deb for his treatments, talking to docs about his care, being involved with his physical therapy) but at the same time feel I should be cut some slack since no male role models in either of our families were very hands on in raising young infants/children. She thinks I don't do enough and she does too much - so she says I shouldn't have to ask you to tell you do these things - you should know - (but honestly, I really don't! I can't read minds!) If I get mad that she is criticizing the way I am doing something (then I am the victim - and so it goes on and on.. )
    Still, Ethan is doing great with his treatments and we wouldnt trade him for the world, but I feel our marriage has suffered so much. I just wish she would also realize there is some value in the way I parent even if it's not the way she would do things (she is very Type A high strung personality, I am definitely more laid back).
    Am I being unreasonable here?
    Anyways, that's just one husband's take on things!!
    I agree with so many of your observations Ellen and so many of the other posts on here.
    Anyone have some insights, advice, or suggestions on how we can make this work without being disrespectful, resentful, frustrated? I still love my wife, but right now our patience is realllly being tested!!
    Great blog! Sorry for the long post!

  34. Ellen you've inspired me (AGAIN!)

    I've been wanting to tackle this subject on either my personal blog or kidz blog for awhile now, and you've inspired me to believe that it can be done.

    I'm wondering if I can share what you wrote as part of a kidz post that I'm hoping to do in the next couple of weeks? Let me know.

    Thanks girl! xo

  35. Neel, I only just now saw that you'd left a comment, and I hope you read this. I am sorry for everything that you have been through. And, I relate—because I am the Type A personality in the relationship, and Dave is more laid-back.

    Obviously, there is much to say, but I think it's really, really important for you and your wife to have time alone together. Away from Ethan. You're both going through a very stressful period, and it's easy to forget about your relationship. And have a lot of resentment on both sides. So, figure out ways to spend time alone so you can talk and also do something you enjoy (and can discuss, other than Ethan). Or see if you two can even get away for a weekend, somehow. If you can talk through what's on both your minds in a neutral setting, that can be a lot more constructive than dealing in the charged environment of your home.

    Email me if you want, anytime.


Thanks for sharing!

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