As young people mature, there are those days that mark the next step taken towards adulthood. There is the acquisition of a driver's license, dating, first part-time job, first trip alone without your parents, and more. Each event is noted with glee (and perhaps a little trepidation!) by parents and youth alike, as they celebrate the gradual increase in responsibility and maturity.
For a young person with FASD, those moments are often out of reach, or are unable to be attained until much further down the road. Developmental age doesn't match chronological age, and some things will remain forever out of reach, much to the sorrow of everyone. Some, like Kenny, can straddle two worlds. Others don't fare as well. Kenny is able to bounce between his older and younger with great facility, but there is a reason he is unable to sustain friendships with anyone his own age...he can't remain in that "older" place for too long without needing to have extended periods of true younger aged play. As a camp counselor, this works marvelously well for him, as an almost 18 year old man, it makes life an uncomfortable fit.
However, there are milestones, but we hesitate to mention them or lift them up because there is a sense of loss, or even shame around it all. There is the diagnosis finally obtained, oftentimes after years of what seems like fruitless chasing before finally it is confirmed officially. This may not seem like much, but for an invisible disability like FASD, it can affirm for the parent and child alike that, no, they are not crazy or imagining it, there really and truly is something wrong, regardless of whether a brain functions well for a week here or there and then proceeds to completely malfunction the next. We have celebrated with Kenny when he finally went an entire week making certain his wallet was in his back pocket each morning! We have celebrated when he came out dressed appropriately for the day's weather, and not wearing a polar fleece when it was 100 degrees outside (Seriously, more times than I can tell you!). We have celebrated when he finally, FINALLY learned to read...at 13 years old. Each is an important milestone, regardless of what age it was reached or how insignificant it is for some people...or even if that milestone ends up lost when the behavior backslides a month later.
A young person might perform fabulously in a well structured environment with a timeline laid out and a familiar setting, like Kenny did as a camp counselor, and yet be unable to find their way to the grocery store in a two main street town...as Kenny can't. When cues are able to be taken in by those around them doing things that can be copied, FASD kids can succeed, but when left alone, they can't initiate changes in schedule, or facilitate even the most basic of needs such as making certain their personal hygiene is handled every single morning. FASD is characterized by regular malfunctions...and then seemingly smooth sailing...then malfunctions over and over again, The very lack of consistency is enough to drive you crazy! What was easy yesterday, is completely impossible today.
The patterning takes years, and sometimes, the fact that we have been so successful with Kenny because of his literally having 24/7 therapeutic parenting works against us. Depending upon the setting, others just don't encounter the Kenny we have at home. They don't see the confusion when we walk through an airport and I try to guide him to find his way, and it is impossible because there is too much "data" to take in. They don't see the 17 year old who cries because one day he can do something, and the next for some inexplicable reason, that skill is lost and has to be re-taught. They don't have to watch him in a parking lot as he is blissfully unaware of cars coming behind him because his brain can't make out the direction it is coming from...or that it is even there. They don't see the young man whose voice cracks as he speaks of the frustration of living in a brain like his, unable to recall basic information some days, or able to follow a simple recipe on the back of the Kraft Macaroni and Cheese box. Give him a lunchroom and food that appears, give him a tightly held schedule, give him a single task and he performs like a rock star. However, try to have him live autonomously as most kids his age are doing, and he is lost, unable to perceive when it is time to go to bed or rise for the morning, unable to initiate any activities of his own volition without them being suggested, unable to even keep himself clean or dressed appropriately without gentle reminders. His intellect belies it all, but his arriving at the retreat for counselor training without sleeping bag, pillow, or towel after having gone to camp for 10 years is our daily norm.
Thursday we had another milestone to celebrate, one that would might force some parents to grimly accept the inevitable, and the young adult to hang his head in shame. We had an appointment with attorneys to discuss legal care for Kenny in the future. Turning 18 in November, Kenny will likely need help with his finances and medical care all his life, along with numerous other activities we all take for granted. We began working on Medical and Financial Powers of Attorney for Kenny, and he was present to ask any questions he had, and to be part of the entire process. It just so happens that one of the attorneys in the meeting has an adult daughter adopted from China, and there was a tangible understanding of our situation because of that. God arranged that one, we didn't...we had no idea prior to entering the room that Kenny's needs might be so well understood.
Waiting for our appointment.
On the drive over to the office prior to picking up Dominick, Kenny and I talked about how important this day was for him. "This is just as important for you as other things are for your brothers and sisters. You need this to move safely into your adult life, and we are going to make sure you have all the support you need to be all you can be in the world." I shared with him.
"While I wish I didn't need it, " Kenny responded, "I am so glad it will be taken care of and that I won't have to figure this stuff out all alone. But I bet this is a sad day for you, mom, and dad, too. No one signs up to have kids like me."
"Sad? NO! While I wish things were different, I am happy you are so high functioning that you can take part in this in a meaningful way. And I am also refusing to see you moving into your adult life as sad, but instead as a gift and a surprise. Who knows what you will do? Who knows what you will accomplish? You have so much going for you, Kenny, so much to work with versus many kids who will never get half as far as you have! And, we aren't even done with high school yet, I am sure that with the right help, you will attain your dreams of being in ministry somehow, even if in a less traditional way, and that you will do something with your life that really matters. This paperwork is important, but I am not going to view it is 'settling' or to feel bad about it, in fact I am celebrating that we have come so far and have figured out what we need to have in place to not only protect you, but to help you blossom. You have a long way to go, so much more to learn, so much to discover, and having the right protection in place ensures that you are safe and can focus on what is important rather than struggle with what is impossible." and I sat there quietly afterward.
"I am so lucky to have you and Dad. Most parents would be so disappointed, but you always give me hope. You are also very realistic with me, which helps more than you might know. Hiding from what doesn't work never helps. Thanks, mom."
No Shame. No Hiding. The truth really does set you free, and we are celebrating that Kenny is who he is; a wonderful. bright, amazing survivor of more than most of us could handle! This family doesn't hide from the truth, we embrace it, we work with it, we accept it, and we look for ways to celebrate wherever we can.
FASD is nothing to be ashamed of, neither is living with your family as an adult or having the wisdom to ask for help when you need it. The shame would be in hiding from it.
Kenny and I have work to do, research to explore, and hopefully a new blog to create where we will share what we are learning, and where he and I will both write about what this all feels like. It is our way of working with it, of helping others perhaps understand what it is like to live in and with a brain like Kenny's. There are also ministry avenues to pursue, high school to finish, and a slowly emerging adult to enjoy.
What there isn't time for is shame.