Once he was diagnosed, Hubby and I have done our best to research as much as we can on Autism because we really didn't have a clue. I definitely do not understand nor know everything there is to know about Autism particularly because every autistic person is different. There are a few things that I do know for instance I know my son, but could never understand the struggles he deals with or how it feels to be autistic. I do know that I hate labels, generalizations and people thinking that he should be or act neurotypical. There are several things that bother me, particularly when it comes to a lack of knowledge or understanding from general society. I get frustrated when people stare, gawk or give dirty looks if my son has a meltdown, stims or can't control his volume level in a social situation. I get frustrated when other children yell at, bully or tell me he isn't listening or stupid, even more so when their parents are there and refuse to get involved. I really dislike parenting advice from a person who has never raised an autistic child, been involved in their care on a daily basis or thinks they know my child better than I do. I hate when people are dismissive of his diagnosis or of him in general because of his diagnosis. I hate when people tell me that they hope he gets "better" as if there is a cure or he will magically not be autistic one day.
Now I know that is quite a rant and I am sorry for that. I am aware that I cannot expect people to magically understand something, especially when it doesn't typically affect their every day life. I also know that as his mother I am quite defensive and can be vocal, but being the parent of an autistic child means that I am his advocate and sometimes quite literally his voice. So as a mother of an autistic child I would like to make a few requests if that is alright with you.
2. Be open minded and accepting of differences. I have taken a look at the world and seen judgement and hate for any difference. I try to teach my children to be accepting of people and treat them with dignity and respect no matter their differences, I can only hope that people can do the same for my children.
3. Don't allow your children to bully. My family has been in several social situations in which children have been mean, cruel or rude to my children, both of them. I have seen parents completely disregard this behavior and wave it off. We tend to remove our children from these situations. If our children behave in this way we immediately react and discipline. We do not tolerate this kind of behavior because we know what it feels like for our children to be on the receiving end.
4. Please understand the difference between a temper tantrum and an autistic meltdown. My son has had a few meltdowns in public and the responses we have gotten have been ridiculous. Someone once told my husband that if he knew how to treat our child this never would have happened. It is crazy to me that some people have the audacity. Here is great information on an autistic meltdown: http://patienttalk.org/what-are-autistic-meltdowns-a-brilliant-explanation-from-amythest-schaber-in-ask-an-autistic/ Now don't get me wrong, he is definitely capable of throwing a temper tantrum but it is definitely not the same.
5. Please understand that social situations, loud noises and even eating can overwhelm my autistic son. He might cover his ears, stim or cling to us. He might not seem like he is listening or in his own world but he is trying to deal with overwhelming sensations running through his mind. He is extremely sensitive to food and will therefore only eat certain things. Please don't be offended if we don't come to a social event because he might not be up to it.
6. Please don't try to force neurotypical ideals onto him. He is different, his brain is different and it is unfair to expect him not to be. He is polite, kind, loving and gives the best hugs/snuggles. He is amazing just the way he is.
7. Please understand that Hubby and I see the world differently now. We have so much patience, deal with doctors, speech therapists, IEP meetings, teachers, OT therapists, insurance and other agencies constantly. So if we have no more patience, are short or seem frustrated it is because of all the things we are facing. But none of this compares to all of the things Bugaboo deals with trying to fit in a neurotypical world.
If your still with me thanks so much for reading, trying to understand and willing to be open minded. Thank you for your support. If you have questions about anything please feel free to ask. Thank you for letting me rant a little. Our Bugaboo has been going through a rough transition at school and has been burnt out with all of the testing, therapies and changes he has been dealt with. Our Doodlebug has been a little frustrated and upset lately.Sorry for being a little MIA. Our kids come first and they have needed us quite a bit lately.
It might be a crazy, unexpected and tiring journey, but I will spend everyday loving it and my family. So until next time, I will just keep pushing through this journey of an everyday mom...
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