A few days ago Ricky (unknowingly) said something that dismayed me. He ran in to the kitchen and said, “Dad, I’m going have a kid, maybe name him Kyle Jr.” then he smiled, giggled and ran off. Obviously, this SHOULD have made me proud, but “the thought” that Ricky may never be capable of understanding marriage and/or having children disheartened me deeply and sent me – I’m a bit ashamed to say this – but it sent me right up to the edges of depression. I immediately went and read something and was able to feel MUCH better immediately.
THEN I realized I had NEVER posted what I had written and just re-read… so here goes:
Same Worries – Just a Different Parent
We’ve probably all experienced some sleepless nights worrying about our kids futures. We’ve also all probably experienced some sort of DENIAL or even REPRESSED that what and who our kids are – may last them a lifetime. Certainly we all HOPE they will eventually “grow out of it” or “there will come a cure” or they will “reach a higher level of cognition” – at least a baseline that allows them to be minimally productive by the world’s standards. But who knows?
I was recently reminded of this as I had a conversation with Steve who wondered aloud, “What will their future be like? What will they be capable of? Will they ever be able to hold a job – get married – have kids? Will they be able to experience the joys that come with those things? What will happen to them when I get too old to care for them?” A lot of what’s and what if’s, I know.
So, how can we come to grips with what may turn out to be what some may consider, a “limited life?” Because of their special circumstances, so many experiences left un-experienced; or joy left un-joyed; or friends left un-friended; or life left un-lived; OR – trials left un-tried; or difficulties left un-faced; or misery left un-experienced; or growth left un-grown? How can we learn to come to grips with it and not allow it to dominate our thoughts and lead us down an unproductive path?
Well, I’d like to suggest a few ideas for you to ponder. Keep in mind, this is just me – I am not a doctor or an expert or a psychologist or psychiatrist or a spiritualist. I am just a father who wants what’s best for my two boys affected by autism; a father who struggles just like you; a father who’s unwilling to just let it be – I have this disease called “OVERTHINK” that forces me to find meaning in everything – even if there is none. Read at your own risk.
I CHOOSE TO BELIEVE: We are the ones that worry – not them. Let’s look at worst case scenario (WCS) – but only briefly: What if… your child stops progressing right now – or happens to regress? What if the level they are at now is as cognitive as they’ll ever be? What if that happens? Can you deal with that? Can I deal with that? Yes we can – as long as…
We do everything we can to Help Them Live and Achieve to Their Fullest Potential – whatever that potential may be. Because we have no idea WHAT their potential is, creating expectations for THEM can be a trap – for US – and them. We can’t control what they are capable of becoming – but we CAN control our ability to help them live and achieve to their fullest potential.
If Erik and Ricky (my two boys affected by autism) have already reached their full potential right now – or even REGRESS, I can STILL work and learn and grow to make sure they have every opportunity to experience as much life as they can. I am not motivated by their progress; I am not motivated even by their effort – or their lack of effort. I am motivated because I love them, just the way they are.
If you can live with “WCS” – and you CAN – whether you are aware of it or not – ANYTHING above and beyond what they are capable of NOW is icing on the cake; THEIR CAKE.
I CHOOSE TO BELIEVE: We have been charged with something unusual, very challenging and HIGHLY REWARDING. We were given these children because we are capable. At the risk of sounding arrogant – believe me, this is an area of extreme humility for me – OF COURSE, I would have two boys affected by autism – I am just the man for the job. “I will not be given more than I can handle.”
NOTE 1: I’m not sure, but sometimes I wonder if I believe “I will not be given more than I can handle” because I say it so often – or I say it so often “because I believe it” – but it serves me either way.
NOTE 2: If this duty IS more than I can handle and you know it – PLEASE don’t tell me!
I remember, as a teenager, my father telling me that “Fear, Worry and Doubt cannot exist in the same mind as Confidence and Faith.” I believed him then – it worked – and I believe it more than ever now.
I CHOOSE TO BELIEVE: These are special children. They require special attention. As they get that special attention, they thrive. Maybe not in the way you and I would prefer, or hope – but in a different way. They experience fun; they experience happiness; they experience joy. Maybe not in the same ways we get to – but in THEIR OWN ways. Come to think of it, not even you and I experience things the same way.
For us to imagine or project that they are “missing out” is fruitless. Who says?
I CHOOSE TO BELIEVE: It is not only your children that are special. Those of you that have been chosen to care for, love and selflessly serve your special children are more than capable. You have been CHOSEN. Chosen to be the caregivers of these magnificent spirits; Chosen to learn and grow WITH them; Chosen to help them live and achieve to their fullest potential.
I believe that as we accept these – possibly lifetime – challenges, as we lovingly GIVE – we GET. The reward for us – is in the giving. The reward for them – is in our giving.
Here are some thoughts from a previous post titled: The Reward is in the Giving. It reads:
When it comes to our children – really when it comes to anything – it’s not what you get that is the REAL reward. It’s what you give and in giving what you BECOME that is the REAL reward. Think about that. If we do things based on the expectation that we will get a return reward from the person we serve it can be a recipe for disaster. Especially in our case – hey, the reality here is that some of our kids will never be able to say “I love you.” And building in your own mind that they will ever be able to say or show you that they appreciate your effort can set you up for disappointment.
Let me explain what is happening to you – and hopefully me – right now. As we selflessly serve our children out of love we are BECOMING. THAT… in a nutshell is more of a reward than anyone else could ever supply. The tireless way you go about servicing those you love is helping you to become a unique and very powerful individual – if you let it. It’s up to you to decide what you become. You completely control your reward.
I am reminded of a passage from one of my favorite books, “As a Man Thinketh” by James Allen, where he reminds us not to fret or fight, but to accept and learn and grow from our circumstances. AND he warns us to what may happen if we do not.
“Circumstance does not make the man; it reveals him to himself. In the light of this truth, what, then, is the meaning of “fighting against circumstances”? It means that a man is continually revolting against an effect without, while all the time he is nourishing and preserving its cause in his heart. That cause may take the form of a conscious vice or an unconscious weakness; but whatever it is, it stubbornly retards the efforts of its possessor, and thus calls aloud for remedy.
Men are anxious to improve their circumstances, but are unwilling to improve themselves. They therefore remain bound.”
Well said, James – VERY WELL SAID.
Steve, you have been chosen for this unusual, very challenging and HIGHLY REWARDING assignment and I know you are capable. Your children are blessed to have you as their father and will thrive as you give them love and guidance. THEY – are in GREAT hands.
Sometimes we have to remember what we already know, huh? Thanks for reminding me, Ricky. I feel better already.