tonglen.

the lack of writing that i do on the subject of parenting a child on the autism spectrum is odd, considering, but it’s a subject that i’m hesitant to broach most days. the truth is that my feelings about it fluctuate a lot. my son is rapidly approaching four years old and sometimes i still catch myself wondering how i got here. at the same time i realize that i’ve gotten past the merky denial that comes with an early diagnosis, where the term “autism” is formless, undefined and hangs over you like a warning. where you tell yourself things like early intervention will solve it like a problem. where you think if you try hard enough you can make it go away. my son was diagnosed on his second birthday, and at the time i had no idea what to expect or to feel. but as he gets older i see more clearly those behaviors, the ones that seemed abstract when he was still just a baby.

what i’ve learned over the last year and a half is that the rules that apply to parenting apply to autism: there is no simple solution or answer. no two children are exactly the same, period. what works for my son might not work for another child, and just because it works today it might not work tomorrow. during the diagnostic period of filling out endless surveys and questionnaires and hearing theories by different therapists and doctors and seeing how they contradicted each other made it clear to me that my son did not fit any one profile. oddly enough it was his (hmo) pediatrician who said to me upon hearing his diagnosis, “don’t put henry in a box.” i have refused to do that, even when it’s meant that i come off like a pushy complainer. i’ve accepted my role as “high maintenance mom” in the eyes of his therapists & teachers. it’s more important to me that my son is taught the way that he learns, not forced to perform the way that others want him to.

my son has been going through a lot of transitions lately. the school year ending means lots of schedule changes, not seeing familiar people anymore and new people showing up. for my son, repetition is everything. it is how he functions, assimilates, relates, and stays on the ground instead of floating away (this is my interpretation, anyway). any change to his schedule is extremely upsetting to him. navigating changes can feel devastating, to him and to my husband & i by association. couple this with the fact that he is 3 1/2 and naturally in a temerarious, defiant period of his life. i feel like i’m walking on eggshells in a way that i haven’t since he was a colicky newborn. i am constantly worried about setting him off. the frequent tantrums are looking more bratty, but lately i’ve been trying to muster a little more compassion. public humiliation sucks(!). but i realize that getting some negative attention from strangers is not the end of the world. lately i’ve been trying to understand my son better. even though he can’t tell me what is wrong, he is telling me through his tantrums. lately i’ve been trying to listen more. and let those tantrums happen. and not let it feel like something that is happening to me, but something that is happening to HIM. and how can i help him to get through that?

i often say that parenthood is a crash course in life. all of the little things that you turn a blind eye to or regularly deny or suppress come right up to meet you. our children are our biggest mirrors. i think that if parenthood is a crash course in life, parenting a child on the autism spectrum is a master class. i confront my biggest blind spots daily. i’m forced to fight on days when i just want to hide under the covers. i am forced to be confrontational when it’s my nature to be passive (or passive aggressive). i am forced to be nurturing & affectionate when it’s my nature to shut down & withdraw. i am forced to show up when it is my nature to run away. one of the things that has surprised me most about motherhood is that somehow the love never runs out. after the most challenging, exhausting days, i still wake up (sometimes after being up all night with him) happy to see his face. i still constantly look for new ways to try to help him, new ways to make it better for him, new ways to make him smile.

 

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s