I have seen this badge a lot out there on Autism sites. I have told people before that it sometimes annoys me and they don’t understand. I guess a lot of that is because I know what it takes to really love someone with Autism. It makes me think of the quote that says “Love is a commitment not a feeling”. That quote is true in all relationships, but I think it is even more true with an Autistic person.
Anyone that knows Quay is overwhelmed by his charm and his flirtatious nature. They love the smiles that you can get and how if you catch him in the right mood he can be a very loving boy. When I hear someone say I just love him and his laugh, I smile but I know what that laugh means 99% of the time for me. I mean do they really understand that his uncontrollable laughing is a symptom and that this laughter has caused me to physically pick him up and carry him out of the store because that laughing has made him unable to walk. Do they get his flirting to get you to rub his leg or arm is a self stimulating behavior? Do they get that real love in my eyes means showing him how to cope with his behaviors and reactions by himself? You see I can be charmed by him too, but I know that he will not stay a cute a little boy forever. My Quay is going to grow up to be a very handsome young man. I also know that the behaviors that may be socially acceptable and cute now, will not be when he is 25 or 35.
I am thankful every day that I have the privilege of being the “mother” (I will explain in the next blog why I put that in quotations) of a severely autistic boy who is also severely mentally challenged and is hitting puberty All of his conditions combining right now means we have a lot more bad than good. On a daily basis I get to love a person with autism when he decides to destroy his new toys and shove them down the vent and laugh about it. I get to love him when he starts to cry or scream in public or at a restaurant and you have people stare. I even got to love him a couple of weeks ago when he decided it would be hysterical to have a bowel movement in the middle of his bedroom floor and not only smear it all over him but also on the carpets and the walls and his toys. I know that there are people all over the spectrum and some deal with worse than me and some are thankful reading this as it put their struggles into a different perspective.
I completely get that raising awareness means helping research, funding and allowing people who have no one in their lives on the spectrum to get a glimpse into the life of an autistic person. I also completely understand that what Quay must go through in his head on a daily basis and is unable to communicate to anyone is 100,000,000 times worse than anything I can do to care for him. That is why I try to learn as much as I can to help him. I just think it would help caregivers like me (which I know I am a fortunate one as I have a partner and respite) to see just as many that say “I love a caregiver of someone who has Autism”. So for all of you reading that go through it, one day at a time, day after day: I admire caregivers of autistic people.
If you have recently had a diagnosis of Autism or if you are just becoming aware of the spectrum and would like more information or resources, please check out our website at www.autismlifelink.com.