I am the Mom of a young man in his 30s who has autism and is lower functioning. We’ve fought the good fight, we’ve done everything and anything we can to help him but…he still has autism. My husband and I and our other sons are at peace with his autism because to accept The Kiddo, autism and all, is to love him. Please understand; we are not happy he has autism and our lives are not AT ALL as we had planned. But this is our life, so we accept and move on and take joy and happiness where and when we can get it.
It’s actually freeing to accept our Kiddo and his autism. Yet others in our lives can’t seem to leave well enough alone and *pick* at us. It is those on the periphery of our lives, the In-Laws, the extended family whom we almost never see, and those with the *perfect* children, who seem determined to upset our carefully filled applecart with their supposed *good* intentions. They wonder aloud, in front of us, if they should invite him to his cousin’s wedding. They brag about their children or grandchildren and are bored by our autism stories, telling us they are so tired of hearing about the Kiddo and his darn autism. They *forget* to have enough chairs for him to sit at table for a holiday meal, telling us they didn’t realize we would bring him. They banter the *R* word about within our hearing, never realizing it is not only insulting to us, but to Our Kiddo. They chastise and lecture and tell me if I really wanted to, I would be able to attend a bridal shower or concert or picnic or some other event no matter I was not able to find a respite worker to cover. They offer up yet another autism therapy they’ve recently heard about (and we’ve tried ten years ago) inferring we are failures as parents because we’ve given up hope since we’re not jumping on it THIS MINUTE.
Do I feel like a failure? Nope! What I do feel is guilty. You think you know why, but you are wrong. I do not feel guilty for anything I’ve done or have not done for my son. I do not feel guilty for taking time for myself or for my marriage or for our other sons or for my own career. I do not feel guilty for not being able to do extra things for family members or for not taking trips we’ve been badgered about. I do not feel guilty for not attending events the Kiddo hasn’t been invited to because he has autism and the extended family is uncomfortable, even after 30 years! I do not feel guilty because I’ve stopped calling or emailing any news about Our Kiddo and his brothers to those who feel the need to interrogate me or question my motives. I do not feel guilty for loving The Kiddo or for accepting his autism or for being proud of him for accomplishing things others may find insignificant. And I do not feel any guilt, whatsoever, for remaining close to those in our network of family and friends who have been supportive and kind to us in our now three decades long autism journey.
What I do feel guilty about is not telling those perfect and condescending people in our lives to take a flying leap. I should have done it when I wanted to long ago but stopped myself because I didn’t want to seem petty. But the only person trying not to be petty is me. I thought, over time, they would change or understand or want to understand, but that bunch has no desire. Understanding requires a bit less selfishness and a bit more kindness and compassion for others. I thought they would see our struggles and give us a break. I thought they would include us, all of us, in family events and holidays. I thought they would admire us, not belittle us, for putting our autistic son and his brothers’ needs ahead of theirs. I thought they would eventually see I wasn’t a terrible, neglectful mother but just a Mom trying to do the best for her autistic son. I thought they would eventually love The Kiddo and see what a good person he is, despite having autism and love him as much as we do. Hah, was I wrong!
I’ve wasted enough time and energy feeling guilty and sad about Our Kiddo’s autism, defending our family’s choices and my character. I’m moving on, letting go of the guilt and being happy. And I will happily tell anyone where to go who feels the need to make ME feel guilty about anything.