If I were less technologically challenged I would upload the video from my father-in-law’s camera which I took at bedtime tonight. Since I can’t, I’ll try to describe the shear ectasy of filming my little cherub in night-vision (beady eyes) while he sang “Rainbow Connection” and requested “more count in Eng-er-ish” (which I’m quite certain is of the Germanic root).
I used to think that women who devoted their lives to the sole purpose of raising their children were weak and uninteresting. I vowed that I would never give up my dreams for the sake of another. But then, something spectacular happened, my dreams began to come true right before my eyes – and they were anything but about me.
I’m not completely one dimensional. I entertain other interests – though I have little in the way of time and money to explore them properly – and I will always vehemently maintain that Autism in no way gives definition to my identity. It is, rather, what the circumstance of Autism has done for my life that has brought me to find my true identity. It’s given me pause to appreciate what is important in life, has taught me the meaning of unconditional love, has defined friendship and family, and has most importantly taught me tolerance and patience.
I’m not saying I’ve had an epiphany. Nor am I saying that I don’t have a lot more to learn. I make mistakes every day. I tend to ignore reality in light of hope, and while I wouldn’t trade being blissfully naive for having all of the answers, I know that there is a fine balance between maintaining an optimistic outlook and ignoring a flashing neon sign that screams STOP AND LISTEN!!! I am also passionately stubborn and incurably insecure. I love with every part of myself, but I give up easily when my heart is wounded.
There is one thing that I know now – without a doubt – that I didn’t know a year ago. I’m a good mother. It sounds simple enough; but it took me a long time to find my sea legs with this whole “Mommy” thing. I don’t have most of the answers and I don’t always make the “right” decisions – but I always do my best. I work harder now for this one child, than I ever did for the thousands. I know that if I can change this child’s life, he will change the world.
I suppose that nearly 31 years ago another mother felt the same way, and maybe I am beginning to appreciate her sacrifices all that much more today. And maybe that is just another of the many gifts that Everybody’s boy has given me.
PS: I love you, Mama!
Tomorrow is Peter’s IEP eligibility meeting. We’ll be hearing the reccomendations from the School System Team based on thier evaluations. I’m not sure I’m ready. I mean, our team is prepared, everyone has worked so hard to make sure every detail is thought through.
It’s the emotional preparedness that I feel I’m lacking. This past week I’ve alternated between raving lunatic to inconsolable mess. There is something about tomorrow’s meeting that makes everything real. I know it should’ve been real a year ago – and it was in many ways. But tomorrow, a new team of experts will meet to discuss my child’s special needs.
The actual development of a plan aside, hearing more professional accounts of Peter’s strengths and weaknesses is going to be a great reality check for me.
Though, the wondering and waiting has played havoc with my emotional health, and my most valued loved ones. So I suppose at least after tomorrow (or Friday at the latest)…I should be able to take another step towards reconciliation and tick another unusual “first” off the list.
Wish us strength…
Something’s going on with my little boy. It has me very concerned. The light in his eyes has faded a bit and his affections seem to have been replaced with self-involved impenetrable scripting.
He seems uncomfortable in familiar situations, and it’s almost like he’s grown weary of fighting so hard to connect and is on a mental “break”.
In one regard I think he’s beginning to achieve a higher level of self-regulation, doing better at recovering from meltdowns. Maybe this requires so much energy that he just can’t engage with us too. Maybe with more mastery of the whole self-regulation component, his sweet, effervescent self will re-emerge?
But I’m scared out of my mind. We fought so hard for this connection, were so taken by how much he craved it, I feel that I must fight not to let it slip away - lest there be even the smallest chance it not return.
I don’t know what else to do. I worry that somehow, somewhere I’m failing him – that he needs more.
I can only hope that as we approach the momentous third birthday, that he’s just in a transitional phase. I miss the hugs and kisses that were just emerging. I miss holding his hand at bedtime while he falls asleep or drawing pictures in the bath.
It’s hard not to take set-backs to heart, especially when we’ve always maintained such an upward trajectory. Tonight, as I sat down to write this with a burdened heart, my confidence is restored. Peter woke up crying for Mommy, something he hasn’t done in several weeks. When I went to his room he requested “more cozy” and I packed the blankets around him. Then I asked “Who’s your favorite Mommy?” and he said with a big smile “Mommy”.
Today I had one of those ironic experiences in karma – I posted emphatically about the joys of Autism and then I had an enormous reality check.
Perhaps I misconstrued the joys of “Autism” with the joys of “Peter” and waxed a bit philosophical. While I certainly believe that Autism brings with it enormous gifts that shouldn’t be overlooked; I failed to give due justice to the unique and ubiquitous challenges that accompany.
This is not easy. Walking your child on a leash because he doesn’t have the receptive language or body awareness not to come into harm – amid stares (although fewer than I imagined) – it’s not fun. Having absolutely no means to console your child, when he is pounding his head against the floor – is heartbreaking. Constantly thinking two minutes and steps ahead and never having a second without worry – is exhausting.
The toll Autism takes on everyone it touches can seem insurmountable. The marriages that don’t rally crumble – one statistic states that 93% of marriages with children on the spectrum fail. It’s not so hard to see how, the stress and resentment are palpable, combined with the lack of time or energy to truly put forth the effort necessary to maintain a partnership. Friends slip away – it’s not on purpose – it’s just that aren’t friendships usually based on commonality?
There aren’t really words to explain what life is like. Every child with Autism is different, every parent reacts in kind. But we all do our best, I can assure you of that.
The next time you see a parent struggling with a child, whether it’s evident that child is on the Spectrum or not, just know how precious the gift of being non-judgmental is. No one wants their child to be in emotional anguish, no one wants to feel like they’ve failed to adapt to societal norms. Ultimately we just all want to be free to live our lives to the fullest and love our children in whatever way possible.