Delayed?

The old-fashioned term for a disability involving a low IQ used to be mental retardation. But that has connotations and is no longer allowed because it is a demeaning term. What we are left with today is mentally challenged or developmentally delayed. But it's all the same thing, and when I say retarded, I mean no disrespect. I mean that unlike the children in Lake Wobegon, Ben's IQ is decidedly below average.

Delayed ---- retarded --- slow???

Yes, medically, physically, emotionally, academically.

Persons with Down's are delayed  in almost every sense of that word, which is why I labeled this post WHAT, ME HURRY?  Ben's immune system is slow to mount in response to microorganisms. Ben may get sick with the same thing everyone else in the family has, but he will manifest symptoms later than any of us and usually be sicker, since his body is slow to register that something invaded and therefore slow to respond and by the time he responds his system has taken a serious hit. Ben is slow to register pain, if hit, burned or otherwise 'assaulted' by something that does not feel good. It is almost like he kinda registers something, gets a frown on his face, wonders what it is and then reacts... in much the same way that cartoon characters do not get affected by gravity when running out over a cliff until they actually see that they have nothing to stand on but thin air.

Ben is also slow physically. He can take half a morning to get dressed, meticulously eyeing one sock at a time, then slowly bending down to slip the sock over the toes, straightening the sock over the heel, carefully making sure there are no folds,  then up the leg with a good meticulous long-drawn out pull all the way up to the knees, then slowly lower the leg, after which he fiddles around looking for the other sock and repeats the process. You don't want to watch this, because if you are in a hurry, his process will absolutely drive you batty. If you include his need to also put on his AFOs (leg braces) over the socks, and then insert the AFOs into the shoes, to say nothing of his carefully velcro-ing his shoes at least three times per strap before he is satisfied with the position of the straps on his shoes--- from barefoot to fully shod can easily take 20 minutes for Ben.

Ditto for drying himself after a bath, getting dressed and so forth. Nothing wrong with it, but if you are a fairly fast and more than slightly impatient person like me who carefully calculates every minute of your day to get everything done as efficiently as possible... you had best look away and let Ben do his thing, HOWEVER LONG IT TAKES, because watching the process can be enough to make a grown woman wail in despair. :)

 If you cannot take it any more and you choose to step in and predict all the disasters in the world fall over his little blonde head if he does not hurry the process .... guess what??? It helps not one iota. --- Ben's epitaph is 'HE-WHO-WILL-NOT-BE-HURRIED'.

In fact, encouraging him (or threatening him within an inch of his life) to speed up the process has the opposite effect. --- And so mom is duly humbled, gets daily lessons in mastering the art of patience, and has long since learned to leave the room with a smile.

Now, the word retarded, in broader terms simply means delayed, and I would say that in terms of Down Syndrome that term does not totally fit the bill. Yes, they are slow, but that is not all. The issue (mentally speaking) is not just one of being 'delayed', since delayed sort of indicates that sooner or later one will catch up. For example, if your flight is delayed out of Chicago, you are not usually afraid that you will never get to Denver, Colorado, rather you understand delayed to mean that you will get to Denver later than you expected to get to Denver. -- However, if a person is developmentally delayed (or if we dare use the term mentally retarded), the person is not just delayed in getting to destinations or milestones of life, but there are definitely destinations that that person will never get to.

For example, in the case of my son, who is estimated to have an IQ of 45 (on the low side for Down's, but not on the extremely low side), abstractions are beyond him. For example, we can work from now till the cows come home, but he will never be able to grasp basic algebra. [At this point if I am having a conversation with another person I am often told by my conversational partner that he or she does not get algebra either, but I would maintain that that is a different story. Part of my job where I work does sometimes involve teaching college algebra to persons who plan on graduating from college, and I have yet to meet one person (of college material) who cannot get through college algebra]. In contrast, my son cannot even begin to grasp what x is or why we are looking for x. He is pretty much stuck somewhere back in the very concrete concepts of 2nd grade reading and math, unable to carry the 10s, but able to punch numbers on a calculator to assist him where his powers of abstraction fail him.

To say that he is developmentally delayed is, as I am suggesting, highly inadequate. He is equipped with less IQ points BY DESIGN, from conception, and he ain't ever gonna fully catch up. For example, while he is mentally about 8 years old, I cannot ask him hypothetical questions like "Ben, if you could ______________ ?" The subjunctive "if you could' is completely lost on him whereas most typical 8 year olds are already capable of that abstraction.  With Ben, the term 'if you....' never works. So we struggle, for example, to teach him about strangers, whether you go with them when they ask, where they are allowed to touch you. In school they try to teach safety by teaching the kids in special ed "circles" of family at home, of extended family, of friends, of people we know, of strangers. Each circle teaches what mom and dad can do to you, what strangers can and cannot do to you, but Ben cannot get the abstractions of any of those circles and what the different persons are allowed to do or not do to him. He does not understand why we do not give the technician at the optical store a hug after he adjusts our glasses,  or why we don't stand at the side of the road waiting for the school bus waving our arms and saying hi to every car that passes on the road.  HIs is a trusting, loving spirit, well-meaning, and thinking well of all. We have much to learn from that spirit, at the same time that we need to protect him from the few extremely sick people out there who would (if they could) take advantage of his willing, trusting, loving heart.

 It's not like he will in 10 years catch up to an 18 year old level of functioning. Mentally Ben functions at about 8 years of age and that is as far as he will ever get. Emotionally, emphatically and in other ways, he is more perceptive and compassionate than an 8 year old. He has a better grasp on the rules, and cares more about following them than most 8 year olds, so NO, he is not 8. He is a 17 year old boy with Down's.

So what, you may say, let him be slow. What is the big rush? Life is too speedy to start with. And I agree. I get him up plenty early in the morning for him to take as long as he likes to get himself ready, eat breakfast and go out the door at a leisurely pace, without being rushed or pushed, and it works beautifully --- most of the time.  There are just those few times where something in life requires that we hurry, and those times I do almost everything for Ben, just to get us going on time. --- And then there are those few times where hurry is necessary and Ben has to muster it, but almost can't, and those can be frustrating. Like today when we left a building down in Denver and were parked a good 5 minutes walk from the building and it was raining cats and dogs. We had no coats, no umbrella, and Ben is way beyond a size I can carry any more. He just walked at his normal leisurely pace, and by the time we got to the car, we were completely drenched.

Last when Ben's older brother Alex (aged 19) was home, when we went places, Alex, who is at a military academy and used to walking very fast everywhere, took to walking one step behind Ben and guiding him along with a flat hand against his back, the way they do in their company when they are on runs and some of their company mates are so spent they can hardly run any further. :) It's a good trick. I learned something and I have used it since when I need Ben to keep moving.

Ben is a gift. I continue taking daily lessons in patience, in sniffing the flowers along the way, in stopping to pet a dog, admire the way light interference and refraction (yes, the physicist is coming out here) in an oil spill in the parking lot.  -- Besides, what is the big hurry... there is no race. There is only right now, so take a deep breath and enjoy it!!

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."