Seriously??

Hello peeps,

Today's topic is a mixture of thoughts.....things that make me say "WTF, seriously?" First off -- the back and forth "debate" among ASD parents....you know the ones who prefer to use the phrase "a child with autism" vs "autistic child". My thought on that -- what's the big deal? The disorder is the same regardless. Ok, ok I get it that some parents don't want their child to be defined by ASD and/or want people to know that their child is more than just a label, but seriously....is that something that you have to get into a heated debate over? The other big debate that makes me say "WTF, seriously?" is the whole "stay-at-home" parent vs "working" parent thing.....some parents stay home by choice, others stay home because of whatever reason -- then on the other side of the debate are those who work and aren't able to stay home for whatever reason. I seriously do not understand why folks feel the need to debate which type of parent is better -- in the end we all do what we can for our kids, we do the best job possible based on our circumstances and financial situation.

Another random thought.....lately we've been dealing with the whole "transition to high school" thing and trying to decide which school would be the best choice for Taz. Yes I've commented here on the blog my thoughts and feelings about this whole thing -- yes I've vented and been a bit sarcastic. One thing that I haven't shared is a message I received from someone who apparently read the blog and accused me of being an "Autism Snob" (among other things).....WTF, seriously? No I will not post her message, cause quite frankly I thought the woman was a royal b*tch....I will however address what she said to me. One of the joys of being the blog owner is that I moderate things and determine what comments will be posted and what ones won't.....if ya don't like that, tough cookies....my blog, my rules.

Ok so the short version of her message/rant.....apparently she is the parent of a child on the spectrum. Her child isn't as high-functioning as Taz. Her child is pretty much non-verbal, struggling with potty training, etc. In her message/rant she basically accused me of having the "My ASD kid is better than yours" attitude. Listen up sweetie, I have NEVER had an attitude like that -- I am very sympathetic to what others are going through and dealing with, I try to help people as much as I can (thus one of the many reasons I started this blog), and I am extremely thankful that our son is where he's at right now. If you bothered to read my entire blog then you would know that when we began this journey, our son was a lot like yours. We have worked hard to get him to the point he's at today.

So no, I do NOT think my ASD kid is better than yours. What I do think and feel is that my son IS capable of more and it frustrates me that just because the school and IEP team have never dealt with a kid like him before, they don't know what to do to help him achieve his goals....thus they are trying to convince us to just go the easy route instead. Why on earth would we settle for the "certificate of achievement" if he's capable of actually obtaining his diploma? Why give up and go the easy route when we've come this far? Ok, I understand that you're p*ssed off....you're mad at the school in your area, you're mad at the ISD, you hate autism, etc. -- I understand, I get that -- but don't take your anger out on me, don't accuse me of having an attitude that my kid is somehow better than yours or go on some rant ripping me apart because I do what I do. I will always fight for my child...I will be his voice until he can do it on his own....I will fight for change, I will fight for his rights and the rights of kids like him.

I understand that it rips your heart apart that your child is less functioning and you feel like you'd be wasting your time trying to do things. But how will you know if you don't even try? In the beginning my son was "normal", then due to a doctor's error it all slipped away -- he lost all verbal skills, he lost his potty training, etc -- try to imagine what it was like having those things, then watching it all slip away. Perhaps that is why I fight so hard? But you know what, I wouldn't change my son for the world. I love him for who he is, autism and all. What I will fight to change is what the world's view is of people with ASD. So many of these kids are capable of more than what society thinks, all they need is a chance -- all they need is someone to believe in them and be willing to work with them. As I've said to many parents, if you give up without even trying, then you lose....your child will lose. It's like running a marathon and then just when you're almost to the finish line you give up....you stop and let someone else cross the line in front of you....thus instead of taking first place, you've settled for second or just getting your "I participated" ribbon.....or worse yet, you're so afraid of being in that marathon, that you don't even bother to try. Trust me, you have no idea what your child might be capable of, they may just surprise you.....so don't give up without even trying. Don't believe everything the "powers that be" try to spoon feed you.....just because a certain percentage of kids might not reach a certain level, that doesn't mean your kid will do the same.

I've always said, a parent KNOWS their child better than any professional does. Just because someone is a specialist, teacher, ISD employee, etc doesn't mean they know your kid better than you do. Focus on what you child can do rather than what they can't -- give them the chance to try. Trust me, if for one second....ONE SECOND....I thought/felt that Taz wasn't able to achieve a diploma, etc then I would be able to accept that and would shift my focus to the "certificate of achievement". I know the reality of ASD....I know that there are some things these kids struggle with and/or can't do. I've already accepted the fact that he will probably never be able to drive a car -- but that doesn't mean he won't be able to do other things. I have no doubt that he WILL be able to hold a job, live independently, etc. Yes it frustrates me that just because the school has never dealt with a kid like him before, they want us to just give up and go the easy route....follow the herd so to speak, rather than push to have them develop a program that would fit his needs and help him achieve things he's capable of. I'm fighting for changes not only for my son, but for all of the other ASD kids coming up through the district behind him.....kids like your child.

Half of the programs our school district has in place NOW....stuff they didn't have when we first started this journey.....half of those programs are available now for other kids because of our son. They developed these things because of him, and as a result other kids (like yours) are benefiting from it.....so yes, you're welcome. When we first began this journey, they didn't have stuff available like ABA therapy, early intervention programs, etc (at least not in our area) like they do now. Hell, they didn't even have a low-stim "relax room" -- it was just a broom closet with a bean bag chair in it! Our son was the "ISD guinea pig"....our son was the guinea pig for the school district. They developed a lot of these programs and services because of him -- because he was so different compared to the other kids that they've shuttled through the school system (kids who were grade levels ahead of him). Hell, if anyone should be p*ssed off, it should be me! More than half of the social stories, schedules, etc that they use at the Elementary school are items that I made -- thus other kids are benefiting from my work, etc. Other kids coming up through the system -- kids who will enter middle school (or elementary school) will have a better chance because of what we started.....because of what we pushed for, what we fought for.....but alas, since no one ahead of us "paved the way" for middle school and high school programs, we'll have to do that as well. Thus whatever we push for now, other kids will benefit from in the future.

Will I just give up now and settle for "certificate of achievement" because that's what the norm was for the ASD kids who've gone through the system ahead of my son and that's what those kids received? Should I just give up and settle since there aren't programs available that would fit my son's needs? No, I will not give up or settle....why, because I know my son is capable of more. And I'm not just fighting for my son -- I'm fighting for your kids too. Other people on the "team" believe my son is capable of more. The problem is, they want to continue to do what they've done for the past 10 years rather than change their programs, etc because "what they've done has worked thus far" (that's what one of the "powers that be" said during a meeting) or "there's no money in the budget" -- well guess what sparky, I'm not going to settle for excuses and what they've done in the past isn't going to work for my son or the other kids coming up through the district behind him. So it's time to make some changes. And perhaps, just perhaps....the things I'm pushing for now, will benefit a kid like yours later on down the road.....so, you're welcome.