All About My Boy

Pandu after losing his first front tooth!

i have been avoiding the fact that i have to think about what life will be like now for my son. this dream i had of a man in the world that i raised and influenced was potent to me. it inspired me. yes, it's selfish to put this vision on my son's life, i get that, but it meant something to me. now, i don't know what to think.

i love him more than anything in the world. it was always my faith that if i found a place for him to learn he could catch up. since meeting with the clinical psychologist i've been avoiding feeling the impact of her words. autism. mental retardation. developmental delay. start to think he will never talk. all big impact words. 

i don't quite know how to deal with the emotional impact of facing the reality of the situation. i want to hide away that it devastates me. i feel myself pretending that it's all okay. i knew that was the diagnosis going in so why is that when i hear reality it hurts so much. 

still my little boy is just as beautiful as he always was. he listens and minds me. he has learned and developed new skills, like staying in bed and going to sleep. but what will his life be? and selfishly, what will my life be? 

today after his IEP I spoke one on one with the special ed teacher. it's a blessing to me to have her. she is young, passionate, dedicated, and controlling. all things that are perfect in this scenario. her focus has always been on nonverbal children and children with moderate (asberger's) to severe autism. she adores my son. she sees the light in him that i do. and it's a gift. 

we were brainstorming since he's been exhibiting more high stress activities, things like maniacal laughing, self hitting, pinching. all of these are things that he did when i first brought him home but now rarely does unless he is highly stressed. we were brainstorming possible triggers. the change of routine for him and I is probably a big one. me not feeding him dinner. only having 1-2 hours with him a night. 

i shared with her that i'm struggling to find my own routine. i'm trying to figure out how to balance having 2 jobs, making meals, going grocery shopping, cleaning the house, laundry, paying bills, the basics of managing a household. i can't give him a routine if i don't have one. he needs one. i'm finding one. 

i almost started crying because i admitted that there was emotional impact to hearing the "official" diagnosis. she understood and i was grateful. it's like why can't choose the child model 12 version and go with it. admitting that unfortunately that is not my reality is hard. feeling alone in dealing with it is hard. but i'm not alone. 

my little boy is amazingly beautiful and special.  for some reason i am the lucky one that gets to have his smiles and his love every day. the diagnosis doesn't change that love. it doesn't change anything except having a diagnosis and eligible for regional center services. my son is a precocious, adventurous, exuberant, loving, audacious, resilient, free spirit who happens to be blind and autistic with mental retardation and developmental delays. 

so it goes. 

.... yes, i'm still alive. just busy. sorry blog friends!