Traveling with Ben

I recently had the privilege of traveling to Europe with my son with Down syndrome. He had flown once before, to Texas to visit family, but never as far as Europe. This was new territory.

Ben was surprisingly easy to travel with. He has an angel's patience when he is not sure what is going on, and he is happy to sit and wait for the next leg of the journey. This one started at Boulder Table Mesa Park and Ride with a bus to the airport. Note the modest amount of luggage -- we prefer to travel light.

We each brought only one jacket along, and Denmark was surprisingly cold this summer, so almost every outdoor picture features Ben in the same jacket. 

Every day on the trip, one of the stuffed animals Ben brought along had a birthday. In this case it was Ben the Bear (stuffed animal in the background is actually a Colorado Christian University Cougar, but Ben has named him "Ben the Bear"). 

We flew from Denver to Toronto to Copenhagen, and thankfully Trans-Atlantic flights are equipped with nice movie choices. Ben COULD NOT sleep on the trip. COULD NOT. So he pretty much watched 8.5 hours of movies on the last leg of the trip. I think it was Zoo-topia, over and over and over again. 

Ben the bear was well behaved, and very attentive to the movies as well. 

In Toronto where we sat for 5 hours, we got a wheelchair for Ben and that made moving about the airport easy and seamless. When I tried to do the same in Newark, the airlines required that a person FOR SAFETY REASONS push the wheelchair for me the entire time. We were not allowed to just get a chair and for me to push it on my own. (Read - slight annoyance. I find the safety risk a red herring). 

An iPad is a great thing to travel with. Ben has a bowling game he likes to do on the iPad. Kept him busy for hours of waiting. 

Danes have real sweet tooths, and icecream is a super nice treat in Denmark. We had it on several occasions. Ben is a big icecream fan. So far, Denmark is awesome. 

Feeding ducks was a past time of my childhood, also one Ben was happy to engage in. 

This one playground was really cool. I would have had a picture of Ben, but apparently I did not take any. This 'playground' is for ages 14 and up. It is actually different exercise equipment out in public at a park near numerous trails you can walk or jog on. This particular piece of equipment works on upper body pull ups, but there were many others. Ben loved this "playground".

We also played stylites. And in this case, I have to brag on my new walking shoes. 

And on Benjamin Nike (Benjamin the victorious --- with Ben the dog in his hand). Why did I later go to Greece when columns were right here to be gotten in Denmark? I am not sure. 

Taking Ben to the beach was a treat. The Danish west coast has amazing beaches. And amazingly just like my older kids who did not grow up with the ocean either, Ben got his feet wet while he was standing at the edge of the water waiting for me to go in and get a little bit more wet. He did not notice that the waves were sneaking up on him. 

What is Denmark without a little viking? We explored part of Ben's heritage by going to the Viking Center in Ribe. 

Sleep like a viking. 

Sail like a viking.

Did I mention that Ben the dog was along too? And that he also had near-daily birthdays?

We did much walking along lush trails like this one. Note the Danish sky here, and above. For the most part it was cold and borderline wet or raining. The Danish summer seemed to afford us only shades of gray. Some days were light gray, some medium gray, and some dark gray. :)

Of course, a trip to Legoland.

This ride Ben did 'all by himself', and very happy and proud he was. I had trouble on the Egyptian ride, another very lame ride, where he was not allowed to sit by himself (decided a young woman who was monitoring these sorts of thing.) Seemed a little discriminatory to me, I said, since he is 19, but she did not budge, and it was not a battle I was prepared to ruin the day with. 

We visited the wild west as represented in Legos.

And had icecream, though that is not quite apparent from this picture which is post icecream clean up.

Yup... the Legowild west, and that, we explored with  Ben the dog, who was along in the suitcase. 

Isn't Ben the dog cute? Note Ben the dog is any stuffed dog owned by Ben -- and there are many of them. 

Ben was a super gem on the way back. He even SLEPT on the plane after a few movies. 

Finally, we were six hours late in Newark because of lost luggage and delayed flights. Ben just put his backpack on the ground and put his head on it and tried to rest (with Ben the Dog). 

Ben -- the perfect travel mate. 

A more Accurate Portrait of Down's

I recently was surfing the Internet with the search terms Down Syndrome, Adult, Mental Health. Such searches usually occur to me after times when my son has been exhibiting a series of behaviors which are more challenging than his normal-but-still-challenging behaviors. (In the past three weeks we have had to deal with multiple behavior issues at day programs, including, but not limited to, running away, throwing things, hitting people, wiping an entire piece of speech software off his iPad,  turning off his GPS watch -- and very cleverly done on the day when he later ran,so we couldn't locate him.)

Never a dull moment. 

(There is still relatively little written on the Internet and in books about the life of adults with Down's and even less on mental health issues; however I did procure the only published book in the US on that topic and I am happily reading along now.)

But that is not what I wanted to talk about here, what I really wanted to talk about is the 'face of Down's' that so frequently shows up on the Internet. 

Most searches about parenting a child with Down's will bring you to blogs by mothers of cute toddlers and preschoolers with Down's who write hyper-positive blogs about how their kids are just like any other kids. And that claim is both true and not true; it all depends on the angle you take.

Yes, your son or daughter with Down's needs to go to the doctor on the same schedule as your other kids and he or she will need shots just like your other kids. He or she needs clothing, boots for winter, food, and yes, love and quality time, just like the others do --- persons with Down's to paraphrase the Jew in Merchant of Venice: they laugh when you tickle them, they bleed when you poke them with a sharp object... Etc. In short, they are human.

So, where is my 'but'??... You knew it was coming. 

The 'but' is this --- yes, you take your son or daughter with Down's to the doctor regularly just like you would any other child.But in the cases of a reasonably large percentage of kids with Down's you as the parent will become best friends with the pediatrician, the endocrinologist, the cardiologist, the orthopedic surgeon, the ophthalmologist, to say nothing of the otolaryngologist. Kids with Down's have more health problems -- on the average-- than typical kids. That is time-consuming, all those times in waiting rooms, all those times in the emergency room (for some of us), all those therapies and extra check ups. It is NOT just like having an ordinary kid.It is kid ++, the deluxe needy model.

Yes, kids with Down's still need education and they are going to school just like other kids --- but that learning they do in school is much slower, and every piece of learning they acquire tends to be concrete, needs to be broken into teensy bits for them to comprehend it, and it also often requires special education and one-on-one in order for learning to take place.  Again Kid ++, more time consuming, less intellectual yield. 

Is my son with Down's just like my other three kids?? Yes, he is human, he looks like them, he has likes and dislikes... But also an emphatic no. All three of my older kids are financially independent, one is in grad school, one is a newly minted officer in the Marine Corps, and one is finishing his last year before getting his bachelor's in physics. My son with Down's will never get a bachelor's degree. He will never become fully independent.

I would even go so far as to say this, that the early years with Down syndrome (in spite of all the medical stuff --- and we had way more of that than most families with a kid with Down's get to have) -- the early years were easy, real easy compared to late teen and early adult years. The transformation into adulthood has been rough. My son has seen his siblings go and gain their independence and he struggles with the knowledge that he cannot do the same and never will. It depresses him.

People and their reactions to him have changed and I think that has been the hardest part. When he was little and cute, people loved to affirm him and let him know how cute he was, and let me know how he 'really was just like everyone else' (which by the mere need to mention that tells you that they really did not believe what they were saying).  Once Ben got to be about 15 or so and started looking like a teen, grew past 5ft, that changed.Cute was gone and left was a somewhat awkward looking teen with Down's with the requisite teen complexion issues off and on, a teen who cannot speak, whose lower jaw protrudes 1.5 cm beyond the upper lip, and whose features say Down's all over them. 

People -- the general public -- are moderately 'scared' of him, as in, they do not know how to address or greet him, and if he acts strange, like gets upset when a crowd is laughing because he thinks they are laughing at him, they retreat awkwardly away from him, or they actively worry that he might hurt someone or something and they may come across a slight bit aggressive because they worry that somehow they have to defend themselves against this strange boy with Down's.  Benjamin is nothing, if not emphatic.He immediately senses the estrangement and it produces anxiety in him, extremely high anxiety. That causes him to talk to his stuffed dog, or to the wall, or both.At any rate,the more nervous he is the more he self talks and the more agitated he is when he self talks. 

Down syndrome is more than cute kids growing up to near-normal perfection where one almost 'cannot even tell that they have Down's'.

I suppose these hopeful myths are told in an attempt to soothe brand new parents. Perhaps, also, a certain subset of the population labeled 'parents with kids with Down's'  crave that assertion of normality for their new babies with Down's,  even if deep inside we all know that it is not true at all. To raise a kid with Down's is to raise a kid who likely will have more health issues, who likely will be significantly slower in learning material in school, and who likely will never get past simple concrete cognitive skills. It is to raise a kid who likely will always be dependent on someone else to handle his or her finances, health, and living expenses and situation. 

It is not a picnic, folks.And given that close to 50% (if I got this right) of persons with Down's acquire some mental health diagnosis during late teen early adult years, the job of parenting a teen or adult with Down syndrome can at times be extremely time consuming and also exhausting. 

Why this more accurate portrait? Well, I recently acquired "Bright-sided:  How Positive Thinking is Undermining America". Positive thinking to the point of not acknowledging how difficult it can be to raise and live with a person with Down's can leave you thinking, when you get into the teen years, that there is something wrong either with the way YOU are raising YOUR kid, or perhaps something wrong with your kid with Down's. I found it challenging and completely unexpected to have a mental health diagnosis added to an already impressive list of diagnoses for my son, not to mention I was SO unprepared for such a turn of events because everything I had read, all the positive parents I met, did not squarely face their issues publicly. 

We are conditioned in America to only talk positively, so there are few enough places where one can be honest about how things really can be on some days, and the result is isolation  and inability to know how to deal with the issue. 

It is not easy to raise a kid with Down's--- not even in the toddler years. It is even more difficult in the teen years because of the many natural 'teen' issues that are difficult with typical adolescents which are then even more difficult with teens with Down's because you don't know how to deal with them, the person with Down's doesn't know how to deal with those issues, and worst of all THE WORLD does not want to acknowledge the physical, emotional, and least of all sexual maturity of persons with Down's (who appear in the image of the unwashed masses FOREVER CHILDREN). 

I am not trying to spell doom and gloom, but I am trying to spell reality out here. The cute toddler is gone,  the 'almost like us' grade school kid is gone. What is there now is a young adult, yearning to have his own place, yearning to make his own decision, yearning to have a girl friend and move far away from his parents like his other siblings have done --- but unable to do so.

Navigating the waters of young adulthood, finding the balance between either cracking down on immature (8 year old) behaviors in a person with 20 years experience or letting that 20 year old be an adult in his own right, that is like untying the Gordian knot (and no, I do not recommend using a sword!!).  It takes the wisdom of a Solomon and the patience of a Saint.

I am neither. 

I am the mom of the kid who hit your kid....

 The kid who throws things, the kid who gets out of control upset and does not know how to self calm.

Am I embarrassed? blushing? Do I feel terrible? Did I raise him wrong? Does he do this at home? Do others at home hit him or does he hit others at home? 

Hmmmmm? Yes? No? Maybe?

My son has Down syndrome. He also has OCD, obsessive compulsive disorder, a disorder that 5% of teens and adults with Down syndrome suffer from. The way the OCD expresses itself in my son is that he displays autistic like behaviors that sometimes results in aggressive behavior because he gets so anxious when he is in an over stimulating environment that he lashes out in order to get control of the situation. -- And it works. When he slugs, everyone stops whatever they are doing, he is pulled to order, put in a time out or sat down somewhere where he can cool his head and breathe deeply until the anxious feelings leave his system.

He gets anxious in big crowds where people are laughing. He thinks they are laughing at him. He gets anxious and overstimulated  on the dance floor where everyone is hyped, and he most of all. He gets anxious around people, and he seeks relief.

Should he be hitting your child? No! And I am terribly sorry, and I honestly would do anything I could for that not to happen, but I don't know what I can do, other than advice those in charge of him. 

I am not there when it happens. It is in school or in big day programs, and I don't think the people in charge see it till it happens, whereas we in his family see it coming and ask him to take a time out and calm down. He does not want a time out, but he needs one, and people in charge around him need to help him take a break before he gets to the point where he lashes out. He needs to breathe, calm down, get a drink, sit until his heart stops racing, until his breath is under control, and then and only then should he get back into whatever activity he is in (dancing, water sports, ball games, races). 

Does he do this at home? No. He doesn't need to. Home is a very quiet environment, not super stimulating. I am in charge and he knows and respects that, and the environment is also extremely predictable and routined. 

Ok, so at church when my kid is there (19 year old son with Down syndrome, looks like he is 13) and other kids are there -- my son wants to be part of the group, he likes the toys the 8 year olds have, he loves to swing, he loves to slide, he loves to run in a crowd while yelling loudly, just for the sake of doing so. But he cannot. It is scary to other kids, he is too big, and he has too little control of his own limbs. So is he included? No. It seems more and more impossible to actually include him in anything. Since the diagnosis of OCD (and more importantly the persistent behaviors that indicate OCD) he is limiting the social interactions and fun he wants to have more and more by behaving in ways that exclude him from the fun things he loves most. 

There is a tragedy associated with disabilities and in particular with persons who struggle with mental health issues. Not only do they not fit. When they try to fit, or when we try to fit them in they behave in ways that quickly exclude them from the activities they would like to join, and in the case of my son, while he knows right from wrong and knows he should not hit, he also has very little self control over his emotions when he gets sufficiently riled up.

Ok, I am not mentioning this so anyone will feel sorry for us. But keep this in mind when a seemingly 'normal' kid -- out of control -- crosses your path. You cannot tell by looking at the 'packaging' the face, the hair, the body size, whether that kid is fully in command of his own emotions.  In the case of my son, the stereotype is that kids with Down's are so mellow and always happy and sweet. Well... Maybe so, but not he.

A Confession

(Inspired by a writing exercise in my special needs writing group.)

 

Domestic pain can be searing and it is usually what does us in. It is almost indigestible. ~ Anne Lamott

Dear God, 

Hear my confession! I was here last month. Same story, second verse, much the same, an not much worse. But not much better either. 

"Sign the book," Ben demands in his non-verbal way by putting it on top of my bowl of oatmeal, pen attached. 

"No," I repeat. "Ms. K. Said she was out Thursday and Friday. Today is Friday, there will not be anything to sign. Put the communication book back in your backpack, we need to go, or you will miss the school bus." I push the book across the dining-room table. 

He pushes the book back towards me. 

"Ben," I says, "it is time to go." I shove the book in his backpack, yank up the zipper. Then I guide his reluctant footsteps out the door, down the stairs, and into the car -- his face, downcast, scowling, refusing to look at me. 

"It's the OCD, it's the Down's", I think to myself. "Every morning has its routine. One of the routines is for me to sign the school communications book during breakfast, then I hand it to him, he reads what I write to this teacher, nods with a smile, and puts the book in his backpack -- but not this morning..." 

We wait at the school-bus stop in silence. No hugs, no "I love you"s or goodbyes when the bus pulls up. 

"Poor sub in his class room today," I think to myself as I drive down the road towards Lakewood. But... Why did I pick this battle? I could have just signed the #@%& book. I could have written anything in there, even if the teacher did not write any notes to me yesterday. If I had done so, our morning would have turned out differently. Why didn't that even occur to me? 

And then... the usual conflict in my mind -- the familiar spat where half of me wants to accommodate his OCD habits and the other half of me wants to stretch his flexibility -- begins to run in its familiar grooves. When to push, when to yield? For the next twenty-three minutes, as I stop-go-stop- go down Wadsworth Parkway, I feel like a louse. As Anne Lamott says, "Domestic pain can be searing and it usually is what does us in." 

Fast forward to Saturday night ... Ben opens his backback after a weekend sleep-over, and the first thing he hands me is the $#@$& communications book. 

I sigh, but this time I am prepared to sign. After all, it really doesn't matter, does it?

Ben flips through to the very last page, and holds it up to my face -- close, very close. I grab my reading glasses and pull the book out till I can focus.  

Entry -- Thursday: Ben had a great day, we made muffins. Signed Ms. Miller (substitute teacher).  

Entry -- Friday: Ben enjoyed frisbee and a math sheet. Signed Ms. Larson (substitute teacher).

Yes, my son has OCD and he has Down syndrome. He likes routines. But ... He is so much more, and I do not always believe or remember that. When Ben acts, sometimes I see OCD acting, or I see Down syndrome acting. 

When he looks at me, what syndrome does he see? What label can explain my inflexibility, my blindness?  

God have mercy on me, and help me 'see' -- really see -- so I don't inadvertently inflict pain where none is needed, not for him, and not for me.   

--- Amen. 

 

Art is Ben

It has been a while since I blogged. Benjamin is finishing high school tomorrow, and subsequent to this, all art from this school year came home this afternoon. 

I loved what he did in his painting class this year:

Splashes of color, some abstract, some drawing. Here is his master piece on canvas "Under the Sea":

Then there is a bit of nature:

... and some favorite cartoon characters, including ANGER from "Inside Out":

Mosaics and abstracts,

And here is the artist -

Meaningful Activity for the Developmentally Disabled

What constitutes meaningful activity for a person with disabilities?

A friend of mine reported coming home to his disabled son. My friend greeted his son, cooked dinner, and then kicked his feet up with a book to relax. The disabled son just sat on the couch and stared at Dad until Dad was done reading and ready to entertain.

Meaningful activity is difficult for many of us to engage in. How many so-called typical teen boys get out of school and spend the rest of the day on video games? How many of us waste untold hours on Facebook, Twitter, or just browsing the web? How many of us watch poorly written formulaic TV comedies or crime dramas after work, just to kill time?

Well, time is the only thing we really own that is our own precious commodity, and we are all – so long as we are alive -- given the same 24 hours per day, regardless of our social status, income, health, intelligence or emotional IQ. 

What constitutes time well spent? What constitutes meaningful activity?

Well, our adult sons and daughters with developmental disabilities or mental health diagnoses struggle even more to fill their lives with meaningful activities. Whatever they are capable of, so many of them need active support from another human being to be able to do work, and when that support is not available, they have few choices left – namely watching a movie, listening to music, playing on the iPad, all entertainment-style options.Well, not really true. But the above options are easy. Just hand junior an iPad and you may just have purchased peace for the rest of the day. 

My son likes to color, do math problems, play board games, help in the kitchen, fold laundry, and many other things, but when I am home and I am busy working, if he can resort to a movie on the iPad, that would almost always be his top choice.

I have experienced the situation I mentioned above where I sit and read a book, and suddenly a pair of eyes are staring at me, just staring and staring while I try to read. They will keep staring, either till I chase them away, or till I drop my book and engage with the person. (It feels much like eating at the dining-room table while your hungry dog sits at attention with his most intelligent look, staring right at your mouth, following with his eyes every chewing motion your jaw undertakes until you throw him a bite. In short, it is annoying and unnerving and it is hard to continue what you are doing with such vigilant eyes on you.)  -- And while I sympathize with my son waiting and waiting for me to do something to entertain him (much like 5 year olds would), I also feel a need to carve out a minimum of minutes per day where I can recharge and relax on my own without being ‘on’ all day --- first at work, and second at home taking care of my disabled son.

So, when you picture parents or caretakers of persons with disabilities, picture persons who are almost always ‘on’, either at work or at home, being ‘with’ their persons with disabilities, engaging with them, instructing them, or keeping them safe. “Meaningful activity”  is, in my view, whatever keeps Ben engaged, happy, and for some amounts of time, also intellectually and emotionally and physically stimulated. That involves physical exercise, fun and games with family members and friends (bowling, board games, conversation), it involves self care and home maker skills – personal hygiene, taking care of possessions, learning to be safe in public, learning to get along with others, as well as cooking, doing dishes, doing laundry, cleaning one’s room, cleaning the bathroom, etc. It also involves some job training for skills and also academic pieces, as in continuing education. Job training and part time jobs with support will be available to Ben if I can figure out the transportation piece of getting him from day care to some part time job on a regular basis while keeping a full time job myself. The academic piece is not available after public school ends, so that one I will have to bring to Ben myself by what I choose to do with him at home, and that will involve continuing the 3 Rs.

What is meaningful activity for Ben at Church? Well, the service ‘feeds’ him. He likes to sing and pray, and we go to a liturgical church, and the routine suits him very well, since he knows what comes next and enjoys the routine. Outside the service, in Sunday School, there is no meaningful activity for him unless I or generous friends who care about Ben try to design it. He does not fit with the kids, he does not fit with the adults for the free time of fellowship. He does not fit in Sunday School anywhere, and it is times like that, (along with ‘dead time’ at home when I need to get stuff done that he cannot participate in) that caused me to reflect and think about writing this blog.

So often our adult children with special needs are warehoused (are kept warm, fed, and safe). Often they are simply there. Yes, they are ‘included’ in the sense that they are allowed in the room, but there is nothing for them to do other than to sit there and stare at those who are actually doing something. Sadly, at least in the case of my 19 year old son Ben, he struggles to think up his own things to do. He is not, generally speaking, a self starter any more than most five year olds are. Think of him as your typical five year old who reports to you that he is bored, and then he stands there and stares at you until you find something for him to do. He is not lazy, but he has learned, over the years that the things he can do, he cannot do as well as most people can, and therefore he is happy to stand back, passively, and let others do.When he does attempt something, he often fails as he tries to recall in his mind how he saw someone else do a certain task. That repeated failure is unpleasant, and therefore he avoids those things which he struggles with (just like we all tend to avoid things that bring repeated failure).

Meaningful activities – For special needs it costs a lot of money and a lot of time, in attendant care, in modifications of equipment, jobs, and entertainment, to generate it at a level that the developmentally disabled can participate with.  It is crucial that our developmentally disabled do have meaningful activities. Everyone wants to be useful, and the developmentally disabled no less than any of the rest of us.