Hashtag #2

This is the second post about the new twitter hashtags that are connecting moms, which was started in part by blogger http://manyhatsmommy.com/ about 3 weeks ago. This post will talk about the second hashtag I had mentioned #whatanautismparentneeds. I had put a comment on Facebook about this an urged people to read them and my understanding by reading a lot of them that most parents want patience, understanding, awareness, acceptance, and a non-judgmental listening ear. I got some feed back from my friends and would like to really take these things and put them in perspective how it will help in my life.

Patience: It is something that I think everyone who have kids understand. It's not easy dragging kids out to the grocery store, mall, restaurant or Wal-mart, and frankly if we had another choice believe me we wouldn't bring them with us. The fact is that when we have our kids with us things go slower. We are already on overdrive just taking our kids out and it probably took an hour or two to get ready and we may be already at wits end. Just take a breath if you are walking behind us as our kid stops to touch everything.

Understanding: I do understand a ton of stuff my child does is, in one way or another, something every child does. When you have a child on the spectrum all of these milestones are usually something done by younger children and they are just hitting that milestone now (sometimes years later) or the challenges are multiplied by 100 due to lack of emotional or motor control and understanding of emotions. I have 2 NT (neuro-typical or "normal") children, so I know what "normal childhood behavior" is, and how it pertains to my children. Some of the things Eden does at the age of 5 are very "normal" for her age, but there is a flip side to this; she acts like a 3 year old most of the time with the brain of a 5 year old. We also get to factor in the fact that she has anxiety issues, speech of a 3 year old, and is overly emotional for EVERY situation because she has trouble controlling emotions.

Awareness: Parents with kids like mine would like that when say to people our child has Autism, the general public would know what that is and not feel sorry for us. The mere fact that our child has Autism is not necessarily a bad thing, it has it's challenges like any other disorder, but instead of saying, "I'm sorry." Try asking questions about it. Parents don't readily tell strangers about their child's Autism unless they think it will either educate the stranger, or help their cause (like if the child is having a meltdown or behaviors that are not socially acceptable).

Autism is a spectrum disorder the statistics shown in the US that 1 in at least 110 children are diagnosed with autism according to the CDC . I have found some statistics that say in Maine it could be as much at 1 in 80 eight year olds have been diagnosed with Autism. With no known cause and more awareness the statistics are just going to rise. So, this is something that needs to be understood it's not going away anytime soon.

Acceptance: Our kids need this more than we do. I do understand with children it's easier said than done. Kids with Autism have quirks or stims. Eden screams a lot, she stomps, she doesn't take no for an answer when someone doesn't want to play, she doesn't like transitions so when it's time to change tasks or to try and keep up with NT children it's difficult for her. She likes to touch people (doesn't matter who you are) and has space issues so she may be a little rough. Educate your children, help them understand to use their words with our children. Teach them that even though they are a little different sometimes, it's just who they are.

Non-judgmental listening ear: This is one of the most important for me personally. As you all know, I love to talk and talking about my kids is my favorite subjects. On the blog, I mostly talk about Eden because I've found that working out her behaviors on the blog has been very helpful. I had no idea what Autism was before I started living it. I love to talk about the cool things I've learned, the difficult times I've figured out (it's actually a great moment in our family when we figure out how to change a behavior), how many things she has accomplished, and how proud of her I am. I do talk about the behaviors she has, but it's not for judgement, it's to educate. The things that I tell people are to help them just in case they are in a similar situation with her. It's important for Eden to have the same reactions to behaviors from everyone or it may make her anxiety worse. It may even cause her to hurt someone because when she is scared she gets aggressive.

When I talk about Eden so much please do not get the impression that I don't talk about, spend time with, or care about my other children. I usually get a few hours a week to spend one on one with each of the older girls. I make time to work on homework with them, use my in-home support to help them understand how to safely deal with certain situations. I do the homework thing, make it to all their school functions, even if both of us aren't there; there is always one of us at everything. It's a huge effort but well worth it, my children always can count on us to be there and they always feel important.

I hope these things have been helpful for everyone to understand what parents like us need for help with our children. Educating, awareness, and support is key to feeling less lonely.