Dylan is 15. I'm not sure how it happened. He's in 8th grade and next year he'll start high school. This makes my heart soar and break all at once.
As parents of a child with special needs, we attempt to take it one day at a time - often just an hour at a time, depending on the day. Yet, we're always looking to the future...just not too much, but everything builds on something else. It's a balancing act and a hard one at that.
When you're asked What do you think the future looks like for Dylan?, I rarely know how to answer. Just like every parent, I want him - all of my children - to be happy and content, wherever their paths take them.
The bottom line - it will be far easier to get my "normal" children down that path. Don't get me wrong, they will have struggles, difficult decisions to make along the way and they will climb tall mountains and feel as though they will never get to the other side. But their complications will be far different than Dylan's.
Some have the courage to ask, others don't want to pry, but I know many wonder what does life at 15 REALLY look like for Dylan. It's complex. Their are days that are beyond beautiful. Other day's are flat out UGLY.
This past fall, a new show entitled "Born This Way" debuted. It follows the lives of individuals who have Down syndrome and their age range is 20's - 30's. With the exception of their chromosomal abnormality, no individual with Down syndrome is identical to to the next. They have a HUGE range of ability, strengths, weaknesses, medical considerations, etc, etc. Personally, I have found this show to represent those on the higher functioning end. It gives me hope of the possibilities for my own red head.
That said, I want to share where Dylan is at - RIGHT NOW. Physically, he's 15...in the thick of puberty, is two inches taller than me at 5'3 and weighs about 125 lbs. His voice has changed and his shoulders have broadened. He's no longer a precious baby or cute 'lil boy, but a teenager becoming a young man.
Despite his age, despite his numerous strengths, he needs a great deal of assistance. He's a teenager and he STINKS. Hello deodorant. But this was a process of trial and error. For the longest time, he wouldn't have anything to do with it. We let it go and tried again later. Hey, you do what you have to do for the sake of peace and sanity. When we tried again, we had more knowledge. Spray was the route to go - the other was just too much for his texture sensitivities. WE apply it and it gets applied ASAP once he's dried off from his bath.
No, Dylan doesn't typically shower. We make it work if that's all that's available, but bathes are SO much more successful. We provide 100% bathing assistance. Dylan can't grasp water temperatures, nor too little or too much water. He'll put soap, etc on him, but as for it doing anything beyond that once he's applied it, nope, not going to do him any good unless we intervene. Every single bath is a teaching moment, with the end goal of him successfully performing this task on his own. That time has not yet arrived and we have NO idea when that day will come. It's all good.
Once he's out of the tub and dried off (yup, assist with that too), it's on too deodorant, teeth brushing, shaving, nail trimming and cologne. Ah, teeth brushing...honestly, off all the self-care items we must assist with, this is generally the most challenging. Dylan's oral motor issues are deep and wide and just unpleasant. It gets done, but nope, no one's preferred task. Oh, and as for that cologne, we keep it under lock and key. That boy, when left alone with it, is a tad over zealous! He's been known to put it on just before bed!
Clothing. He can get them on and off, but he'd wear things backwards a LOT if we didn't intervene. The idea of "tag in the back" is an ever present discussion. He can unzip and he's made progress with unbuttoning, but it's a struggle. We aim for elastic pants and pull over shirts. Tying shoes is over rated and we aim for slip on styles as often as possible. Speaking of slip-on shoes, this boy is OBSESSED with his dress shoes. He's also fascinated with his swim trunks at times and wearing multiple clothing items at once - once caught him wearing 13 t-shirts and 12 pairs of socks and his swimsuit...all at once, while a torrential down pour was occurring outside. There has been improvement in this area, but he's inconsistent in his ability to identify what he should wear after looking at the weather.
Self-help is one of his greatest needs and he despises our help, yet he knows, in his own way, that he needs it. It's heart wrenching.
He aches for independence. He wants to be dropped off at youth group. He wants to explore independently when we're out and about. But he's at risk for kidnapping, getting hit by a car when he crosses the street and every other terrible thing that comes to mind. He just doesn't grasp environmental dangers. He is given "superficial independence". He goes to youth group, but we lurk in the back ground. He hangs out with approved individuals without our presence, but they know exactly what's expected of them when we're not there. That's just the way it is.
Despite our need to intervene in so many areas, he has grown by leaps and bounds in recent years. Sometimes I forget. Fifth grade was a HARD year. Speech has always been one of Dylan's strong suits, but he was selective in what he shared and expressed through 6th grade. Not anymore. Dylan tells you exactly what's going on. It may come out fragmented in the beginning, but we can put together what he's trying to tell us fairly quickly these days. We've learned how to articulate questions without leading or prompting - NOT an easy feat. This has been a huge accomplishment.
When I close my eyes and imagine him at 21, the picture is a blur. But this no longer scares me. I remember trying to see him at 5, 10, 15 and so on. I've learned that I have no idea what the future holds for him, but the sky really is the limit. When I begin to doubt if I'm doing enough, I think back to the days of potty training, the days when it took two to brush his teeth and the days when he refused to put on deodorant. He has grown and matured. Things I once thought impossible have happened or are in the works.
Some things happen at lightening speed. Some things happen at a snails pace. No mater what, growth is happening each and every day and that is my hope and strength.