Tuesday, December 11, 2012

On hoping for more than happiness for your child with special needs

Max was out of his head with happiness at his birthday party, because it was exactly what he'd ordered: one visiting clown, one Cars 2 ice-cream birthday cake with his photo on it, assorted Cars 2 paper goods, lots of friends from his class, his little cousins.

Nothing in this world makes me happier than seeing my kids happy. And yet, lately I've been thinking that I want more than happiness for Max.

Over the years, when I've worried about Max's development and capabilities, people have told me the most important thing is that he's happy. I know that's basically true, and that projecting my ideas of happiness onto him doesn't do either of us any favors. When my heart twinges about stuff he's not doing, I can think about how happy Max is and stop the ache.

I am very lucky, I know, to have a child who is truly happy most of the time (unless the store making his birthday cake accidentally uses—horrors!—green icing, in which case wailing will ensue). Max literally beams when he gets up in the morning. He giggles easily and frequently. He squeals when he's excited. He smiles as he kisses me. He is a walking ball of joy, this boy.

Here's the thing, though: I would like for Max to experience so much more than happiness in life. I'd like for him to find satisfaction in work, as I do. I'd like for him to feel the tenderness of being in a relationship, to find enlightenment in traveling to new places, to take pleasure in a hobby (ideally, one that does not involve Lightning McQueen). I'd like for him to know the wonders of deep friendships, and the thrill of independence.

Years ago, when big hopes like these would spring up, I'd repress them. I feared I'd be setting myself up for crushing disappointment. In some ways, my hopes remain tempered—I don't think about Max going to Harvard and becoming a doctor, or that he will climb Mt Kilimanjaro. My hopes are all within the realm of possibility.

But, yes, I'm letting myself have bigger dreams. I am hoping for a richer life for Max, one in which he knows more than happiness. And I'm ready to take the risk of hoping. Max deserves that. There are so many doubters in the world, people who don't understand the abilities of those with special needs. If I don't have these hopes for him, who will?


  1. Very true, and wonderfully said. :-)
    I have the same hopes for my boys, also tempered and aching but for slightly different reasons (autistic youngest son, and mental health issues with my oldest)
    Prayers sent... :-)

  2. I think you've touched on a really difficult issue (certainly for me).

    I think it's really hard to define what happiness is for different people (is there "more" than happiness?)

    I wish for the same things for my son, but as he's now 18, I see less likelihood that some of them will be reality (particularly because he has such a severe communication problem).

    Solomon in Far From The Tree makes a good point that sometimes what we perceive as our kids "suffering" is really us as parents suffering because our kids' experience is so different from what ours was that we can't imagine that it could be fulfilling. It's really hard to separate out what we want for our kids, I think (based on our experiences) and what they want for themselves.

    But the whole topic gives me a headache because it's such a doozy! :)

    I try to think that even if my son's life is very different than mine (in not having some of the things that have contributed to my happiness) it doesn't mean it will feel any less fulfilling. It's kind of like comparing experiences and trying to rate them and which one is better (when most experiences in life are full of joy and pain and are so complex that you can't really rate them). But yea, a really tough subject. Thanks for bringing it up! :)

  3. Here, here! I have no idea what to wish or dream for Charlie. Happiness, yes, but I think hobbies, and fulfillment at something are also within reach. We'll see about the rest. Right now we're working on communication, which is what makes so many other things possible.

  4. The thought of happiness for our kids is steeped so much in what makes us happy, real friendships, work satisfaction, travel, deep relationships with others etc. I fear my son may not experience the joy of any of that, yet he is the happiest kid I know. This makes me truly sad. At some point I know I will have to find peace with knowing that one persons happiness is not the same or derived from the same things as anothers, and thats ok too. But its very hard to not wish for more for my son, just to kick a ball around with real friends, understand a joke, simple things really, but yes, is he truly suffering if he never gets to experience those things. Its all relevant to our own experiences and I think that makes it harder to accept, so we keep hoping. But yeah, "as long as hes happy" stings so much, to me its like saying you just have to set the bar really low and forget about college, friends, marriage, kids, work, all those "normal" things other parents take so much for granted.

  5. Hi -- Such an interesting topic to me. In the past, I would have interpreted the "as long as he's happy" as somehow demeaning or implying that my kid doesn't deserve what every other kid has.

    But now I look around and I see LOTS of people who have all those "other things" -- college degrees, marriage (and lots of divorce!), money, work etc but they don't have "the happiness" piece.

    In some ways, I would say our kids, because they're not part of the status quo, have "more," not less, and have "more" to teach others who are trapped in "if I don't do X, Y, Z, I'm nothing." That said, it doesn't mean that I don't ache for my kid to have experiences that were rich for me -- especially the friendships!

    But at the end of the day, I don't think I would put very much above happiness as a goal for anyone.

    1. Thank you for putting into words what I was thinking when I read this. My gut response when people ask me what do I want for ALL 3 of my girls is to say, "I want them to be happy. Whatever that means for them."
      My two oldest are above average intelligence and excel at pretty much anything they attempt (brag alert) and my youngest has multiple special needs and excels at everything SHE does as it pertains to her and where she is at in her life. I feel grateful that she is such a happy and joyful girl and long ago gave up feeling bad for her because she might never experience what my version of happiness is and I don't let anyone else feel sorry for her either. I tell them to just look at her smile and listen to her giggle. She is happy with who she is and where she is at in her life, and I know of many, many "normally developing" people who cannot say the same thing. :)

  6. This is such a great post.

  7. Yes, yes, yes, yes, yes, yes, YES!!!!

    So many friends see Zoe's arrival into our family as the happy ending for her, as she now has parents to advocate for her and as she lives in a country where her disability doesn't mean society thinks she should be kept behind closed doors (well, all of society, that is... I read the comments on your Huff Post story about that vacation meal out in which a smile & mama solidarity made the night, and it seems some of those buffoons do think Max and Zoe ought to stay hidden). But this isn't the happy ending... this is the beginning of so much more than just happiness for her, I hope.

    So much more.

  8. I say hope for a rich and full life...whatever that entails. It might not be work, though! I hate work, to be honest, but my work is repetitive and physical. If I never had to work another day in my life I'd be thrilled. I need to win the lottery to make that happen, though!

  9. Great post. Keep dreaming big. You'll inspire Max and all of us to do the same. xo

  10. What a perfectly articulated post on a really sensitive topic. My son is only three, with severe speech/language and other developmental delays. Of course I want him to be happy and it brings me great joy that he is happy. But I worry about later, too. I worry about him feeling dumb in elementary school, I worry about whether he'll ever have a best friend, a love of his life, and a career. It's impossible not to worry. And I too, want more than just happiness for my son. I want him to have a rewarding life in whatever way is best for him.
    Thanks for writing about something that's really hard to think about, much less put to words.

  11. Well said, Ellen. The early concerns about eating (orally), walking and talking seem less important as the years go by. My 11 year-old son with CP is also a happy guy - and I am so thankful for that. But I do want him to experience friendship, and to get respect. I see signs of progress and remain hopeful.

  12. This comment has been removed by the author.

  13. Since my kids are grown, in their 20s and 30s now, I've had lots of time to think about this one. I think the hardest thing is to create opportunities to make friends, once they are out of school. For my sons who have more severe developmental disabilities and still live with me, there are few programs for social activities. If we lived in the outlying suburbs of St. Louis, there is a program for adults with disabilities to get together for community activities like going out to eat, going to a ball game, etc, where they could make some friends. It's very frustrating that because we live in the city proper, my boys can't participate. Being able to work in a positive, compassionate environment is the same situation.

    For my sons and daughter who are physically disabled and live on their own, making friends has had other pitfalls. They have all been so desperate to make friends and have relationships, that they have made poor decisions and let people take advantage of them.

    But there have been a few bright spots. The main reason we moved to St. Louis from Texas was so that my son who has schizophrenia could participate in the Clubhouse here. In Texas, he did nothing but sleep all day because there was nothing to get up for. Here he gets up every day to go to the Clubhouse, where he can socialize, eat lunch, work in the kitchen or office, and take exercise classes. My son Tevis, who has moderate cognitive delays, goes to a small coffeehouse/church on the college campus 2 blocks away, and is a welcome member who participates every week, helps out on work days, etc. Tevis also gets so much pleasure out of doing his artwork and planning his greeting card business.

    One more thing I'd like to say is that, even though we want to make our kids happy, paradoxically that might mean that we don't always give them everything they want. In the long run, we contribute to their happiness by helping them learn that they can't always get what they want and that it's important to think of others' needs and wants. The ability to accept disappointment and to consider other people's feelings will contribute to their happiness long after we are gone.

  14. I feel exactly the same way! I want him to experience life to the fullest extent possible, whatever that is. I wrote about this recently, in a post called "Hot Dogs & The Future", because one of the things we joke about is the possibility that The Boy and The Man will run a hot dog stand when he grows up... But I don't want to limit him with my own projections about what he will be able to do, feel, and experience. And because I don't yet know what will be possible, I'm still thinking his future is wide open.

  15. I think Max will be a good self-advocate.


Thanks for sharing!

Related Posts Plugin for WordPress, Blogger...