What if People Misunderstand My Son?

Sometimes I fear that, one day, Josh will do something that gets misunderstood as threatening and that people who are afraid of him will take harmful action.   Because of his disabilities, my son's behavior can seem suspicious and erratic if one doesn't understand what is going on with him.

There have been times when Josh has touched women inappropriately in public contexts, patting their butts or touching their breasts.  Usually this is just part of his flapping behavior, never something sexual.  Some people have been very understanding when they turn to see Josh and discern that he's developmentally disabled.  Some people have gotten very upset and have responded with great hostility.  Josh has picked up food at stores and has started eating it without paying.  He is twelve (and still very cute in my personal opinion) but he is already quite tall for a mostly Asian kid.  When he's wearing a big jacket or hoodie, he looks like a typical high schooler.   I wonder, at some point, are people going to interpret something that Josh does as threatening, dangerous or illegal?  And if that happens, will there be time for me or someone who is with Josh to interpret who Josh is and why he does things?  What if Josh happened to be alone?  Could he have a weird, random or intense encounter with police, a security guard or a neighborhood watch person? Could things go bad fast?

If someone told Josh to put his hands up in the air or to get down on the ground, he is not likely to comply because he wouldn't comprehend what was going on.  Josh does not understand what a police officer is.  He has no concept of legal or illegal.  He is not good about boundaries and social expectations.  Given recent events which have been in the news, such as the deaths of Eric Garner, Trayvon Martin and Michael Brown, I can't help but to play a dark scenario in my imagination where a tense situation leads to his injury, arrest or death.

In general, I still believe that police officers are men and women who are out for the good of the general public and I am very grateful for them. I hope and trust that most have been trained well enough to slow down and try to understand what is going on for people when things seem strange. Yet I cannot deny that somewhere deep inside me is a dark fear that is rooted in the reality that the world is not a safe or fair place, especially for young men of color.  My heart breaks because of this. Lord have mercy on us all.

Today I will lift up a special prayer for the mothers of all of the young men who have been the victims of violence.

"And a sword will pierce your own soul too."  Luke 2:35

A Fashion Eye for the Special Needs Guy

It has come to my attention that some of Josh's pants are too short.  How tempting it is to just let that be and ignore it.  I'm not good with hemming and I hate buying new pants.  After all, he doesn't care.  One nice thing about the combination of autism and intellectual disability is that my son is not at all self-conscious about how he looks.  He could wear the same thing everyday, covered with red pasta sauce and paint stains from art class and be absolutely fine.  Remember, this is a child who is okay if every article of his clothing is put on backwards.  He's all too happy to use his shirt, his pants or his hair as a napkin at any meal.   Most days, Josh comes home from school with incredibly, mysteriously messy clothes.  

We are not a high fashion family.  I mostly wear warm fleeces, jeans and clogs; sort of a uniform of a mom who is too tired and frenetic with the day's fat list of things to do to put much attention to her own fashion expression.  My girls are downstream in a very abundant flow of hand me downs so I pretty much never buy them clothes save underwear and tights.  Recently, I've been letting them pick out their own clothes which often results in some very (ahem) creative outfits usually encompassing a combination of orange, red and pink all at once.  

But as I consider my ultra rapidly growing eleven year old boy who is completely dependent on me to determine all of his clothing choices, I wonder, "How important is it for a child with special needs to be well dressed?"  

I am well aware that clothes can become an idolatry and a money pit.  I am amazed and a bit appalled at how much money can be spent on children's clothing, clothing which will be outgrown or permanently stained in seconds.  In our town we have a little mall which houses several boutique children's clothing stores.   In one of them one can find a t-shirt for a 4 year old girl tie-dyed in pink and magenta with bling in the shape of Hello Kitty faces across the front for $59.  I just don't get that. 

However, I remember going to some sort of seminar years ago where a parent on a panel gave a grave warning which basically boiled down to this, "You're kid is going to look odd enough just for being who he is, don't let him look weirder by not paying attention to what he wears."  I thought that this was an excellent point and have tried to remember this as the years have gone by.  Therefore, I am most committed to spending money and attention on clothes for Josh of all of the people in our household.

I know other parents of kids with special needs whose kids have tactile sensitivities which force them to buy clothes from more expensive brands that have extra soft fabric and seamless clothing such as Hanna Anderssen, Soft Clothing or Sweet Lemonade.  I think you have to do what you have to do and pay what you have to pay to get your kids to wear clothes that work for them.  Thankfully, Josh's sensory challenges do not get expressed in this way.  He's willing to wear just about anything that I have him put on. 

Sadly, I have also observed kids in Josh's special education classes who have inappropriately fitting clothes or who smell because they have not bathed often enough.  One special education teacher told me about a child who had been sent home in the same clothes and diaper that she came back in the next morning.  I think that it's just too easy to disregard the appearance or personal hygiene of a child who is not aware of how he or she is being perceived by others or is not able to express what he or she needs.  I get that given the tremendous amount of work to care for with meds, therapies, help with toileting etc. that our kids need, it's very easy to take short cuts when it comes to appearance and grooming but it's still important that we don't.  

My main priority is that Josh's clothes are clean, well fitting and decently in style.  I want to make sure that people take Josh seriously as he's out there in the world.  I feel a little shallow saying this but I want his clothes to communicate that he is a person of great value, presence and dignity.  I know that nice clothes to not make him so but I want others to remember the great worth of my son that might be masked by his disabilities.  

What are your thoughts about kids with disabilities and appearance?