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He stands hesitantly at the door, my littlest love, watching as Justin and I rock gently back and forth on the glider that serves as our throne as I read his teenaged brother one of his beloved Eric Carle books.\u00a0 I see him mid-sentence, and figuring he wants more pretzels or juice or something consumable I pause and ask him what he wants.\u00a0 \u201cI want to say goodnight to Justin\u201d he says and enters the room, insinuating himself on my one available thigh. My heart both clutches and expands, and I read on about the miraculous Mr. Seahorse as he gestates what looks to be like a thousand eggs for his wife.<\/p>\n
I\u2019ve always loved Eric Carle.<\/p>\n
As Zach settles on my lap I look swiftly at Justin to see how he\u2019s taken this alteration in his routine, and a huge smile graces his face, and I relax. I want this to go well because, well, they\u2019re brothers, and although I\u2019ve tried hard over the years to forge a closeness between them it\u2019s been difficult as they don\u2019t share the same interests, and in later years Zach hasn\u2019t really wanted to try.<\/p>\n
When the boys were very little, before Zach\u2019s regression, my youngest spent a great deal of time trying to get his brother\u2019s attention.\u00a0 He was always pulling on Justin\u2019s shirt, calling to him from across the room, and generally trying to get noticed.\u00a0 It was easier to contrive moments of connection back then; I could put both of them in Zach\u2019s crib and Zach would always take Justin\u2019s hand (and Justin would let him), and I know that satisfied Zach\u2019s desire to be seen.<\/p>\n
Then in the space of a few weeks our baby lost most of his speech, developed a rash all over his body, and the light disappeared from his eyes.\u00a0 I can tell you I wasn\u2019t worried at that point about sibling relations one bit.<\/p>\n
Over the course of the next few months we changed Zach\u2019s diet and started Early Intervention services as we had with his brother, and slowly our son emerged, altered, but once again speaking, and most importantly, happy.\u00a0 As we navigated our way a second time through his current services and prepared for the myriad of hoops we\u2019d have to jump through to get him a special education placement I put brotherly bonding on the back burner, but never pushed it entirely from my mind.<\/p>\n
Years passed, and Justin became more and more restricted in his interests to the same degree that Zach\u2019s world continued to widen, and I saw more and more that opportunities for them to interact became fewer and far between.\u00a0 Justin liked movies on his DVD player, but only the same thirty seconds over and over to Zach\u2019s desire for a full length feature.\u00a0 Beach excursions became work as I battled to engage Justin\u2019s interest so we could last an hour, and eventually I stopped taking them together as leaving early didn\u2019t seem fair to my youngest beach bum. \u00a0My eldest wasn\u2019t interested in any of the computer games that so enthralled our youngest, and eventually I let this dream go as I focused on getting them both to sleep, eat anything other than carbs, and most importantly, (thank God!) potty train.<\/p>\n
When it comes to autism, I have my priorities.<\/p>\n
Over the years Zach would occasionally say he wished he could play with his brother (then in the same breath would ask for a younger sibling, at which point I would emphatically tell him the store was closed). Zach made friends both within and without his school, and his desire for an in-residence playmate waned.\u00a0 He was okay with helping out with Justin on occasion, but that desire for connection seemed to have disappeared.<\/p>\n
Then last night he told me he wanted to start saying goodnight to Justin, and the window opened again.<\/p>\n
My eldest son can read, and in the past\u00a0 year or so has been gracing us with words here and there.\u00a0 In an attempt to elicit more speech from him I\u2019ve been letting him fill in the last word on every page of our night\u2019s literature, and asking him to fill in the last word of the three songs we share together every evening; \u201cSilent Night\u201d, \u201cOver the Rainbow\u201d and his \u201cspecial song\u201d, which I made up in desperation to get him to stop crying when he was six weeks old.<\/p>\n
It didn\u2019t work, but the song stuck.<\/p>\n
We went through our routine, and Justin loved the change. He\u2019d giggle every time we pointed at him to speak, and gave his brother complete and uninterrupted eye contact the entire time. Zach ate it up too, chastising me when I forgot to leave off a word in one line of lyric, reveling in his brother\u2019s attentions. As the last notes of \u201cSilent Night\u201d drifted off I stood up and Zach slipped into my space, and as I went to return our book to his father\u2019s study something stopped me, and I turned around.<\/p>\n
All on his own, my son who initiates affection only with me and his father, leaned in close to Zach so he could get his \u201cforehead kiss\u201d.\u00a0 Then he clasped Zach\u2019s hands with his, and gently grazed them with his lips.<\/p>\n
Justin immediately began his maneuvers around the room with a delighted smile, and Zach gazed at me in wonder.\u00a0 \u201cHe loves you, Zach\u201d I said and my youngest gave me the briefest of nods, a kiss on the shoulder, and bounded out of the room for his pretzels.<\/p>\n
My son has his priorities too.<\/p>\n
There are heartbreaking moments with autism.\u00a0 My son\u2019s dual diagnosis of OCD can be overwhelming at times, and although I believe we\u2019ve finally found a remedy the memories of the past two years are always with us, both our son\u2019s struggles, and ours.\u00a0 There are times we can\u2019t understand him even when he uses his device, and his frustration and my feeling of failure can be difficult to bear. I can never reconcile with the fact I\u2019ll leave Justin on this earth for forty years without me, knowing I\u2019ll have to trust in his little brother to oversee his health, safety, and hopefully, his continued happiness.<\/p>\n
But there are these moments with autism, even severe autism, moments of such stunning clarity and grace that I know I have to push myself to be present so I don\u2019t miss even one.\u00a0 My youngest is taking an interest in his brother again, and I know I will build on this moment, stretch it as far as it will go, hope for their bond to be strengthened and unbreakable as the years and decades pass. It is up to me to grab these opportunities as they emerge, but truly it is up to them to forge what they will, and ultimately I have to accept that too.<\/p>\n
But in the meantime, there is a song, a story, and a kiss.\u00a0 There is a moment of profound love.<\/p>\n
And for once, I am at peace.<\/p>\n
For more on my family visit my blog at autismmommytherapist.wordpress.com<\/em><\/p>\n Follow me on Facebook at Autism Mommy-Therapist<\/em><\/p>\n