Child Care/Dependent Care

I sometimes get asked what the most difficult thing about having a son with Down Syndrome is.

People imagine that perhaps living with a person who is mentally retarded is difficult---that you (the care giver)  lack in patience with the person with special needs  (AND YOU DO sometimes!!), or that the health issues and medical appointments grind on one's nerves (and they might, at times overwhelm you). Others wonder if I look at other boys aged 17, compare Ben to them and shed a tear at what he could have been, but isn't.

And those things can be hard, though, I have to say after 17 years one is so used to all of that, I never compare Ben to any of his age-appropriate peers who happen to have normal genomes. I got over that years ago.

I would say though, that while having a kid with Down's can be very stressful, most of it (as you have already have the impression from reading other posts in this blog) has to do with finding a way to help my son fit into society in such a way that both he and his parents can function as normally and as stress free as possible.

And of all the stress that come from having to function in society, the biggest stress BY FAR is dependent care.

Pretty much, I would say, dependent care is so tough to find and pay for that those of us who care round the clock for adults who cannot be left alone at home at all, get out very little to start with, unless we can take our dependents with us.-- We try for dependent care when we must, and if it is not absolutely necessary, we usually just stay home.

In my case, I am pretty lucky in many respects. Ben is easy to take along to church, movies, shopping, etc. He is potty trained, he can wait his turn, for the most part he can be quiet when asked to (not always, but most times) and he can entertain himself if I bring paper and colors, or an iPad, or something for him to read or play with.

I don't expect to get out much, apart from going to work on my own. I am used to that quiet home life. AND I am very grateful to live with Ben.

The problem is that  I have to work to be able to care for Ben, and to do that, I need dependent care, and that is the most difficult part of living with and caring for Ben.

Why is dependent care difficult, or rather what is difficult about it?

What is difficult is that persons that are no longer little children need to be cared for as if they were still children. And most people are not comfortable with that.

What is difficult about this care is first of all obtaining it. Even when I am willing to pay for it it is hard to obtain.

For the next 3 years, school takes care of Ben 7:30-3 until he is 21. And then what happens to Ben while I go to work??? (Actually, I am not too sure just now, but that is another blog for another day when I have learned more about that).

So let me just discuss 'odd hour' and 'off hours' dependent care in this blog.

Right now, the odd-houred work event is the most difficult event of all--that random Saturday event that one MUST be at work for--- just because work WILl occasionally have those odd hours. And when you work at a small private college, spring graduation time is littered with such events.

The random person on the street would think this would be easy, after all, most humans have  had young children once, and they would either get grandma or they would get a sitter and just pay the going rate--- and off they go to work, what's the big deal?

Well, in our family's case, we have no relatives within thousands of miles, so forget grandma. She was never near enough (neither grandma was).

That leaves 'just getting a sitter'.

Well, most teen girls (and boys)  who are available for babysitting feel awkward around kids with Down's or other disabilities, so many of them flat out do not want to watch my disabled child even if he is easy, would mind himself and really just needs a person with a bit more judgment  than he has, in the house.

In addition, in the rare event where I have found a teen girl who might have been interested,  her parents have found it 'inappropriate' for a girl of age 14-18 to be alone at our home with Ben. (I cannot see the issue, but the scrupulous can, apparently).

That leaves adults that might be able to care for Ben. Many people when asked find that they just don't think that they are the best fit for doing this---and truthfully, I personally don't think *I* am a good fit for being Ben's mom, but that is the reality of what I have to deal with.  So, me along with everyone else pretty much disqualifies the entire population of the United States from undertaking this task.

I understand the awkwardness and had I not had Ben as my son, I would be no different. In fact, I would probably have been worse... but it's back to 'where do any of these kids belong?'. If everyone is uncomfortable dealing with my young adult son, then here he is again, excluded because he doesn't fit people's category of the sort of person they are comfortable being around. (And yet, I would say that 40% of us [myself included], perhaps more than 40%, think that it is wrong to abort babies with Down's. If we believe it is wrong, we also have to stick our money where our mouths are and help make society a place where these persons are welcome to live and be. And knowing that these individuals are going to need a lot of care and support [which is why another 40% think it's easier to abort them] we need to be willing to bring about that support or care in some fashion, or these persons with Down's really are not truly welcome or wanted in our society.)

All that song and dance above to illustrate that finding the occasional care giver is hard, but that is not to say that I don't ultimately find people and somehow work out every stressed oh-my-gosh-what-am-I-going-to-do-with-Ben-that-day situation in the long run. All I am pointing out is that had Ben been 3 or 8 and a normal child, it would have been a lot easier to procure care for him at those odd times when I must be elsewhere.

And now for a cute story. My 20 year old daughter, last year, was trying to make an appointment with a professor at CU Boulder to go over some class material. He offered a certain time and she said that she couldn't because she had to be home to get her younger brother off the school bus, something she did for me in the fall of 2013 on Wednesdays. "How old is your brother?" asked the puzzled professor. "17", answered Kirsten with a smirk, and waited a while to see the stupor on his face. With time, she explained that her brother has Down's, and the professor's face lit up in understanding

But back to care issues ... Online at places like care.com (which I have had to resort to), the going price for special needs is $15-$20 per hour, but even there, it is hard to get last minute one time sitters (to say nothing of the dread of leaving your child or young adult disabled person with someone you never set eyes on before... but I have done that in the past.)

For parents or guardians of persons with special needs, I think the prospect of never getting beyond the caretaking obligations can seem daunting at times. Burn out can be very real. After all, if you have little children to care for, they grow up and won't always need the care. Same thing for elderly. They will need your care for a season and then they may choose a higher skilled facility, or (hard as it sounds) they will not outlive you (most likely) so at some point, one way or the other that obligation will be over.

Not so when you have an adult with special needs to take care of. If a friend asks you to go to a concert, or if a group of friends are getting together to do such and such and wouldn't you like to come?? --- You likely can only come if your special needs young adult can come with you. Your friends get to know that and most of them don't ask you to these sorts of things any more because eventually they know there is no way you can ever go.

But forget my last paragraph. The idea of going somewhere for fun or recreation is dream land --- the thought that you could have a life beyond being home with the special needs young adult and work is not realistic. My hobbies are books, plants, writing, knitting --- all things developed especially so I can do them at home, and do them with Ben or with Ben near.

What I aspire to in life is  not a social life. My aspirations are limited to hoping that some day when special work occasions crop up--ones where I have to be there --that there is an ARMY of people out there saying "you can always call me, if you're in a pinch with junior, I'd be happy to take him for an afternoon or an evening or a morning."