I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…
When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."
The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
But the one that bothers me most is that it's too much about the mom and not about the individual with the difference/disability. Maybe because my son has a so called invisible difference and has to find a place in the mainstream world without the skills everyone else has. We're not touring windmills instead of the Vatican, he's been attacked in school, bullied on facebook and abused by a few teachers. Bottom line, it's his trip more than mine.
Not only that, but I guess I don't relate to it at all. My kid is the Holland, not just the world he's in. He's the different one. it makes it sound so trivial, that with time you'll learn the language, you'll adapt and you'll fit in.
But it's not true. With time you'll fit in to this tiny little niche that supports your child. But to the rest of the world, you're still the elephant in the room. You're the family people look at and dread.
I have had people stop being friends with them because we scare them. No, they haven't used those words but we're two typical smart people who have an invisible disease they're carrying. And there is no test to forewarn them if this could happen. It makes people realize that this too could happen to them and some people realize this and are more grateful for what they have and others, well they realize that this could happen to their future children and they run.
It'd be great to live in a society that with time will become family and second nature, but a lot of times that doesn't happen. You lose friends because you're "too obsessed with your sons issues" even though they do consume you 100% because of where you are at the time. You lose friends because you don't have anything in common any more. You become the center of stares of pity and the whispers and pointing.
And in the world of special needs parenting there are times of pestilence, famine, anger, etc. What about the people whose children can't live within the household. I've been reading her blog, the woman who attempted to take the life of her and her daughter with autism. https://thestatuswoe.wordpress.com/ I couldn't imagine the choice she had to make to even send her daughter away for treatment and then to feel so hopeless that you're better off dead
My kids are identifiable as special needs. People look at them and see different. I guess I just feel when you throw your adopted child into a room full of biological children and noone has their parents around, you can't pick out who is adopted and who isn't. But throw my special needs 4yo into a room of NT 4yo and you can easily pick out who he is. No matter what he has huge identifiable discriminatory marks on him.
I don't know, it just grates on the wrong nerves for me. If it helped you and got your through hard times, I'm so grateful that there was something for you. But we're all different and we all have different experiences and we all find comfort in different things.
To my boys: I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
I can see the relevance to adoption too. In the end, whatever works to get family through the muck of the evaluation process...in the end is a good thing.
Yes, it is about the parent not the child, but the parent is the one who is mourning and accepting at the time of diagnosis. I feel like it's for people who are new to a diagnosis or in the process of evaluation, not for those in the day to day life as a special needs parent or the person with special needs. It is short sighted, but that's because of who the audience is. At that point they are mourning the child (and parenting experience) they thought they'd have. It is to try to help them see their child as a beautiful person in their own right, with their own strengths other than what you saw when you pictured playing ball in the front yard or taking trips as a family which are now (for some) impossible or much more complicated. It's not to say everything will be perfect or your child is going to have no trouble navigating though Holland. JMO but I think it serves a place, early in the process or for grandparents, etc. Past that best not to analyze it too much.
Sorry if mentioning adoption was a sore spot.
Not a sore spot, but you said what I was trying to get out, that it's very short sighted.
To my boys: I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
I go back and forth on this poem. I have gained comfort in it, and I have rebilled against its platitudes that everything will work out just fine if I just relax and learn to go with the flow. Since I have personally experienced two drastically different emotions in response to it, I don't ever recommend the poem to others, although I might try to make the same point in my own words.
Something I'm asked as an adoptive parent is whether I ever regret our choice to adopt children with special needs. While it's true that both boys' needs turned out to be a lot more severe/extensive than we initially thought, how could I ever be expected to answer a question like that? These are my kids. Period. Just like is never regret giving birth and then finding out that they had special needs, I couldn't imagine my life without my two sons, and the thought that I'd rather have different kids is inconceivable. IRS in response to questions like this that a Welcome to Holland approach is often most helpful in response (assuming the person asking is coming from a place of support and not judgment).
I think it's the kind of thing that wouldn't bother me if it came from another person in the same situation (like here). But don't forward me this unless you've BTDT.
Re: Welcome to Holland :)
I never would morn "perfection" that is a false sense of reality. NT or not.
It'd be great to live in a society that with time will become family and second nature, but a lot of times that doesn't happen. You lose friends because you're "too obsessed with your sons issues" even though they do consume you 100% because of where you are at the time. You lose friends because you don't have anything in common any more. You become the center of stares of pity and the whispers and pointing.
No. No, it's not.
Not a sore spot, but you said what I was trying to get out, that it's very short sighted.
Something I'm asked as an adoptive parent is whether I ever regret our choice to adopt children with special needs. While it's true that both boys' needs turned out to be a lot more severe/extensive than we initially thought, how could I ever be expected to answer a question like that? These are my kids. Period. Just like is never regret giving birth and then finding out that they had special needs, I couldn't imagine my life without my two sons, and the thought that I'd rather have different kids is inconceivable. IRS in response to questions like this that a Welcome to Holland approach is often most helpful in response (assuming the person asking is coming from a place of support and not judgment).