Sunday, February 16, 2014

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?  

Friday, February 7, 2014

The Red Vest and Hope for the Future

Have you ever reached a milestone and not even noticed it only to realize that you've been working toward getting there for a really, really long time?  I remember one day in college when I realized that I was no longer putting much of my day's energy into being insecure.  I just stopped in my tracks one day as I walking through "the quad" of my college campus and thought to myself, "Wow.  I used to be so consumed by negative thoughts about myself and now, I'm not . . . so much."  It's like I had been walking, walking, walking toward a certain direction and then when I got there, I turned around and realized that I had walked about five thousand miles.  Sometimes, you just have to stop and celebrate how far you've come.

Today is one of those days in my life of parenting Josh.  It was a normally chaotic school day morning.  Alex was entangled in some sort of high level conflict mediation with the girls so I picked up Daddy's usual mantle of getting Josh out the door to his bus.  I could hear the honk of the bus in front of our house and I thought of the line of cars that was probably beginning to grow behind the little yellow bus so I rushed to get Josh out the door.   Suddenly, I realized that I needed to put the field trip permission slip into Josh's backpack so I started barking orders to my usually very passive son.  "Josh, put your shoes on!  Josh, put on your red vest.  It's cold outside.  C'mon, go, go!  The bus is waiting!"

By the time, I got his permission slip ready to go, Josh had not only put on his shoes and vest, he had zipped it up and was dragging his backpack out toward the bus.  I took one look at him and was smacked in the head with a realization:  Josh had fastened and zipped up the zipper on his red vest all by himself for the first time ever!

You need to know that we have been working on his fine motor skills since he started physical and occupational therapy which was before he could even walk.  Due to low muscle tone and his visual impairment, learning to do every "normal" task whether opening a door to walking up stairs to putting on his underwear is a big project. We have to do a task analysis, get a strategy for training and practice it a million times.

Josh has been working on zippers and snaps and buttons for at least 8 years now to no avail.  Not only are these things very difficult for his clumsy little fingers, he's just not motivated to do them and (with his visual impairment) it's difficult for him to see little things like zippers well enough to manage them.  He doesn't care that "big boys" can do these things by themselves.  To this day, he just wiggles his jeans down when he needs to go to the bathroom rather than unsnapping and unzipping because he can't manage the snaps or buttons.

Honestly, I never thought he would be someone who could zip up his own jacket without help.  I just imagined a life of helping him with these things.  Yet here he was zipping up HIS VERY OWN VEST!  My mama-pride knew no bounds!  Despite the waiting school bus and the long line of waiting cars behind it, I could not resist taking a moment to snap this photo.  I almost wanted to go up to every car waiting behind that bus and tell each of them, "Hey guess what? My son zipped up his own vest today!"

Josh's sudden ability to zip up his own vest gives me immeasurable hope for the future.  If he can master this, maybe someday he can he could fully go number two all by himself, wiping and all!  The thought of saying to my son, "Hey Josh, go take a shower" and having him be able to do the whole thing by himself makes me giddy with joy!  Better yet, what if he could discern for himself that he needed a shower and then took responsibility for his own personal hygiene?  This is crazy but why not?

After all, despite long, long seasons of non-growth, suddenly things can change and people do move forward.  Sometimes it takes forever but anyone can learn and grow.  And when growth happens we have to mark it, celebrate it and take it as a gift of hope that there are more good things to come for the future.