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.