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It’s not just about educating the children…

Written By: teamcharliebear - Jul• 16•14

When I began this proactive stance and tried to become involved in the Bear’s education, something occurred to me. I had absolutely no idea what I was doing! I probably sat through at least 2 IEP meetings before I ever knew what IEP stood for. Sad I know, but it doesn’t make it any less true. Slowly, I began to learn my rights as well as the rights of my child, but these were things I had to find for myself. Trust me, I’m still learning.  No one tries to help you find these resources either. I have a couple theories as to why but none of them are favorable so I will keep those to myself….for now. What I do know is that they call these intimidating meetings and though you can take an advocate with you that knows the laws, they are hard to find. It’s even harder to find one that is more forward than me when needed. So what am I getting at? I am going to add some resources to not only this page, but a downloadable flyer of places that can help you after getting a diagnosis. Autism doesn’t come with an instruction manual or a phone book of helping facilities….but it should! Soon enough, it will. Even if I have to put the thing together myself!

The thing with our public school systems are that they are full of well meaning individuals…They just aren’t being allowed the funds to handle the flow of children and their needs. There were no actual one on one assistants at my son’s last school. They were all shared. In fact, my son’s “one on one” was shared with another child much like my own. Both of them qualify as a flight risk. One of them even has the police documentation to prove that he has wandered off before. Yet, without the funding for more assistants and proper tools, these children are not getting the kind of education that a facility specializing in it would allow them to receive.  You’d think that given the rise of the condition that these specialized schools would be everywhere. They aren’t.  After a lengthy conversation with the Nashville Mayor’s office I was referred to a school that was too far to drive him to every day,  and leaving him? Unfathomable to me!

The good news is that Nashville is getting one at the AFT. I will be giving an interview to Adam at News Channel 5 on behalf of the school Thursday morning.  Not sure when it’s scheduled to air but check our Facebook page and it will likely have footage. To say I’m nervous would be less than the truth. Honestly, I’m kind of torn. Yes, I know what an opportunity this is for these families, and I want to make sure that it succeeds. I’ve  witnessed the miracles that come from the AFT first hand, but it will be difficult knowing that  my child will not be able to qualify for this. We can’t afford the tuition. He also can’t benefit from what we might potentially raise through my nonprofit org Plan It Au-Some due to a conflict of interest.  This will not discourage me.  I know that the more money they raise and the more children that are in demand of these concentrated types of education mean  more schools eventually.  Translation being that the price will either eventually go down, or at the very least there will be more schools, more opportunities, and perhaps even government support in the future through insurance, grants or SOMETHING!  They have every reason to want to make good use of the time they have to teach our children. Why wouldn’t they want to see them living independently?  They wash their hands completely around age 22 and no longer provide any treatment options or school system. Yet they will send them money to just live as an invalid rather than reach them when it could change everything about their futures…It would save them millions!!!! Regardless, I hope you will consider supporting this venture. It’s so very needed and until enough people stand up and say so, it will continued to be swept under the rug.  Like that kid you knew in school way back when. That one guy or girl at church. Your friend’s child. Your child….My Charlie! If I can help this cause I am going to. I truly hope you will join me.

Next up is a long awaited Camp Update!!

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I know, I’m terrible at giving updates. I actually use to update it weekly with his progress, but I simply haven’t been able to keep up this go round.  He had a rocky week or two during the first session we attended. He missed the first two weeks because of wedding and honeymoon business, but we were excited to get back. He always makes great progress over the summers at the AFT. It’s more of that “concentrated learning” I was talking about earlier.  Charlie was thrown out of his daycare while I was out of town. Third strike and all. His aggressive behavior had worsened due to all the changes. No surprise. Changes are the number one cause of setbacks in our household. He wasn’t the least bit excited to be at camp that first day, but it didn’t take him long to start showing signs of his old self. camp 14 03He was obsessed with getting in the new pool they got this year.  Sadly, because he isn’t 100% potty trained  he still had to wear his pull up in the water.  At first, I thought nothing of it.  Then a counselor pointed out that last year he hadn’t been in overnight pull ups. We were still squeezing him into the largest diaper size they made and therefore he was able to wear “little swimmers” in the pool.  Yet, this year, he was soaking up all the pool with his pull up and it was getting obliterated in the process. Blech!  There was only one thing left to do. FORCE the underwear issue again.  Given all the obstacles lately, I admit I was less than thrilled with this idea, but I was less thrilled about the fact that I have been changing diapers for ten straight years..so…. BRING ON THE FIT THROWING!

camp 14 1I was pleasantly surprised that I wasn’t the first one to tackle the issue this time. Did I mention we LOVE our ABA/camp director? He bribed the bear last Thursday to get him into the pool. If he wanted in, he had to wear them. It worked. Motivation is always the key.  Just as important is follow through.  That afternoon after camp was our ABA session and we did three 1 minute long timed trials of him wearing the undies. He hates the feel of them. It’s very different in sensation as well as “we just don’t like different cause different means change, mama, and we ain’t down with that!”  Well, he got down with it, and fast come Monday morning.  I got the kids back from their weekend at their Dad’s just before time to leave to get Bear to camp that day. I got him dressed in the swim trunks with a pull up underneath and away we went. I had remembered to pack his food, but no pull ups! When the one he had on came off he was given a choice between two pairs of undies. We haven’t looked back! It’s now been over 24 hours in “big bear undies” with no accidents! I am in shock, and if i weren’t so exhausted from following him like a hawk and getting up with him at 2 am I would likely be throwing a parade for the little booger down our block right now!  I think part of me is still in denial. I mean, if you had changed someone’s diaper for ten years would you just believe after one day you were scott free in that department. I didn’t think so, but there is HOPE! :) He is also holding his own pediasure bottle again…no spills! He’s also now using his occupation station at the new house just like he did at the old one. He’s adjusting!  It may sound small, but these victories are all leading to an amazing young man that I will never give up on!

camp 14 02One other cool thing that developed last week (4th week for him of camp).  He and one of his friends (who I will refer to as “Clifford” for anonymity purposes) were playing a game all their own. Remember how excited I got last year on week one when he played tag with another little boy? Well, “Clifford” had sort of attacked the bear while he was sitting on a wrestling mat. He wasn’t being too forceful, just playing gently. Well, as you know the bear has a short fuse lately and when they began to tell me this story I flinched! I just knew Charlie went all pinchy/crabby claws on poor Clifford whom I ADORE by the way.  However, they continued and told me that Charlie wrestled back and never got aggressive. Both boys played very nicely with one another and I’ve heard are good friends….my son has a friend. Suddenly, I want to throw him a birthday party next year. Clifford is definitely on the guest list.

Are you guys getting all this? I know it’s hard for me to wrap my sleep deprived mind around, but this camp has helped bear in ways that even as a mother I have a hard time describing. They aren’t just trying to get these kids out of their worlds and into ours. They teach us as parents how to penetrate THEIR worlds. From there, communication is built and we can teach the person with ASD how to function in our world and be as productive and independent as possible.  It takes both. The education of the parents and children and a give and take on both parts to walk outside your comfort zone.  Only then will we be able to make a real difference.

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What has your child’s public school taught you as a parent on how to communicate with your child or vice versa?

Think about that and then tell me this…. Are schools like this really needed? Who will it benefit?

 

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