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On a Quest for Joy?

February 9, 2012

Last night, an advocate sent me a link to a description and video of Alex, a five-year old boy of Asian descent in New York who needs a forever family. This little guy reminds me so much of Joy that I can’t help but pass the link on hoping you may know a family who could be his.

Let me tell you what I see.

First and foremost, his personality shines. The disposition you’ll see on this video is priceless. I think Alex has known love and has had his needs consistently met. Like Joy, it shows.

The question everyone probably asks when they view the video: what about his level of disability? The first thing that caught my attention is that he’s had a very good beginning. It seems highly likely that he’s received almost daily professional intervention for most of his life. That’s not typical with kids waiting for adoption and is a wonderful thing in terms of him being able to maximize his potential.

Do not read too much into the video. He is not necessarily playing with these toys because they mirror his cognitive level. Joy’s cognition is well ahead of her favorite toys. Her favorite toys are the ones she has the physical development to play with on her own.

Did you notice he can turn pages? 🙂 That made my book-loving heart very happy.

Often physical delays come packaged with cognitive delays. Physical differences can limit the way these kids can interact with the world. The same neurological difference that challenge their physical development may challenge their cognitive development. This does not mean they do not learn and grow. You can see how engaged he is with his environment which is critical for learning. Joy is learning all the time, on her own curve.

What about dependency? Kids like Joy often qualify as “dependent” in all ADLs (activities of daily living) and they may never outgrow needing  help. However, the public service system is set up to the advantage of kids like Joy and it has worked very well for us. I’m sure states are different, but here Joy’s level of dependency qualifies her for slightly over full-time hours every week year round in PCA services. This is absolutely invaluable. So don’t imagine you’d be doing this alone. Ask yourself if your family could do this with a full-time nanny of your choice.

Since our family income is above the level that qualifies for free services, we buy into the system with a monthly payment based on a sliding scale. However unlike International adoption, this little guy comes with an adoption subsidy from his home state and my wild guess is that for most families, the subsidy would compensate for payments necessary to access services. And in his circumstance, Alex may qualify for free services regardless of your income.

What about insurance? The same system that gives Joy PCA services also covers expenses for her not covered by insurance. Again, being a domestic adoption, he may bring medical coverage with him.

What is it like living with a child who depends upon a wheelchair for mobility and always will? First, Joy is small so it is easier to carry her than you might guess from her age. You know we just moved into a house that can be made more accessible for a wheelchair user. It is not accessible right now. But by virtue of qualifying for the services mentioned above, we hypothetically have access to another program that provides up to $40,000 per year in necessary home modifications. We’re told competition is stiff for those funds but we’re working on putting together what we hope will be a compelling grant request.

It will be a while before we need a wheelchair accessible van because Joy’s low trunk tone means she still needs some recline in  her seat  in the car. Her wheelchair fits behind the back seat of our Toyota Sienna  minivan without collapsing the chair (important because hers has a custom-made seat that does not collapse). She will be 5 in March and is just now transitioning from a bucket style car seat sold for typical kids into a larger one made for kids with special needs. She will be able to use this new seat at least into her teens if she needs to. It is large –wider than the bucket seat we will have it on in the van.

It seems likely Joy may not be able to live independently someday. While we didn’t guess that, it will be fine. She will likely continue to qualify for PCA services even as an adult and our house by then will be fully accessible. As our other kids grow up and move out, we will have room for live-in help if we choose to hire that way.

I know it may be hard to imagine if you’ve not been given the privilege of getting to know a child like Joy. But the “burden” outsiders see is simply not there. Yes, there is more administrative paper work and more appointments. There’s no such thing as privacy for my introverted self anymore because there is another adult in the house (Joy’s PCA) much of the time. And I’ve had to accept that special ed teachers and therapists can teach her more, faster, than I can.

But in the big picture those are very small trade-offs. Joy is a joy to live with. We’ve never had as much laughter –the sheer delight kind –in our family as we’ve had since she came home. I can’t help but watch this little guy’s video  and see the same blessing waiting for another family.

Last: I’m going to take this post down and remove the comments his advocate left in the comments here when he finds a family because his story is his own and Joy’s is Joy’s. But I think there is enough value in helping his family find him to leave these up until then. It shouldn’t take long  🙂 .

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