The Journey Ahead
You can’t imagine how many times I’ve sat down to write this first post during all these weeks of silence. Some times I’ve failed because there’s so much to tell. Other times I’ve failed because I’m in the wrong mood to write it. The rest of the times I’ve failed because I’m afraid of labeling Joaquin with a single word that most people don’t really understand… A word that every parent I know fears and worries about… A word so powerful, it can suck the air from your lungs and break your heart and body in two. That is exactly what I felt when I first laid it on my child.
And after all these weeks I’m okay with Joaquin being “this”, but I don’t want people to think of him as just “that”, because there’s so much terror and negative thinking surrounding this label, and Joaquin is so much more than a single–word label. And so, although these past weeks have been extremely intense for me, packed with the highest highs and the deepest lows I’ve ever experienced; full of personal discovery, change, and a total overhaul of my life and ambitions; I’ve been afraid to write and share all of this with the world, and open this new window into our life with all its new joys and fears, and the very personal journey that each of us three has started to experience since the day we learned. But the thing is, this is our new life. We can’t really hide it.
This week we’ll be going for our first appointment to try to have Joaquin formally diagnosed by professionals, but by now it is very clear to Joey and I that our sweet and perfect little boy falls somewhere in the Autism spectrum. There: I said it… But as I’ve learned lately, ASD is not a death sentence. At least it is not for Joaquin, nor it is for me.
So for now I’ll save you the full tale of what it feels like to discover that your child is not like all other children. For now, I’ll save you my ongoing recount of what it feels like to be the mother of a special child. Because, for the sake of our sanity and the recovery of our little angel, we’ve had to move on from that point. And I still thank every day for the miracle it was to find the solution on the same day that the problem became apparent. Because otherwise, who knows how long I would’ve stayed in the miserable state of depression you feel when total uncertainty replaces all the hopes and dreams you had for your own child.
The therapy program I found for Joaquin is very different than what I understand most people pursue for their autistic children. It is home–based, performed and directed by the parent. It follows the child without judgment of his atypical behaviors. It attempts to join the child in his world, in order to make a connection he will trust and motivate him to learn about our world and maybe come and join us. It doesn’t suppress symptoms, rather, it attempts to fix the underlying cause of the child’s challenge. It allows and requires you to enjoy, respect, and embrace who your child is right now. It requires an attitude of acceptance and unconditional love most of us never experience in our lifetime. It requires a change in our belief system. It requires self-acceptance, and inner happiness. It begs for me to finally be present and undistracted.
Most of my life I’ve lived in the past or the future. Nostalgic of past lives, or compulsively planning mentally my next hour, day, week, and years… Lately, the chatter in my brain had gotten louder. The little voice attacked many times a day. I had it all, but my hopes and expectations didn’t let me enjoy life fully. Lately I felt old, I called myself old. And I was exhausting myself.
I believe I’m very different right now. Hopefully not just as a temporary change while I help Joaquin overcome his challenges. I really hope this sticks. I’ve started to discover the power of being present. Joaquin is responding beautifully to all of this, and so am I. And while the journey ahead will take some time, there is no doubt in my mind that my son will grow up to be nothing less than I expected and hoped for him. He is intelligent, loving, affectionate, enthusiastic, happy, and full of energy. He just needs more care and attention than a typical child does. He needs a level of dedication I’ve twice declared I thought I wasn’t able to give. And I was wrong.
On a particular low point, at a time when I feared Joaquin suffered from something much more difficult and physical than I think he does, I threw myself on the floor and prayed like I never have… I asked for my child to be happy and at peace in whatever state he is and will be in the future. I asked to be happy for him. To be at peace… I asked for the tools and support I’ll need to get through each mile of this road still so uncertain. For Joaquin to know that we love him, and to be able to express his love for us.
So don’t feel sorry for us. We’re fine… I’m happy (increasingly, most of the days). And now, I can finally tell you more about this very interesting journey I’m starting to enjoy…
Before I finish this post, I wanted to share something I found very sweet and heart–warming. It’s the dedication of “Son Rise: The Miracle Continues”, an amazing book written by Barry Neil Kaufman, co–founder with his wife of the program we’re currently following to help Joaquin (I can’t wait to meet these very special people when I visit their institute in a few weeks). It says:
To all the special children—
who too often have been cast aside,
your lives viewed as tragic events.To all the special children—
who gave us opportunities to find
the most loving and humane parts of ourselves.To all the special children—
this book celebrates your wonder,
your individuality, your magnificence.To all the special children—
may God give us all the wisdom
to see how truly perfect you are.
Truly perfect, indeed.
