Well peeps, the past week or so has been pure hell. We received the evaluation results for the eval they did on Taz (did I tell you about that? I don't remember and am feeling too lazy to go back and look at previous blog posts). Oh well, short version:
With all that has happened this year, I wanted to make sure Taz was still on track academically and just "see" where he is at as far as the social/behavior stuff goes. Suffice to say, I was NOT pleased with the results of the evaluation. The crap school he's at currently....in their "attempt" to get his behavior in check and work on his social skills, etc (which they haven't done that great of a job on IMHO) they decided to "slide" on the academics....thus Taz is NOT where he needs to be going into high school. I found out some other stuff as well, but really can't get into all of that at the moment because part of it involves the crap school not following his IEP...suffice to say, I'm not really thrilled at the moment.
Based on all that we discovered, the evaluation results, etc there is pretty much no way that Taz can return to our home school district this Fall....thus our only option at this point would be to either: (1) home school, or (2) enroll him in the program at "Hell High" for a year in hopes that they can not only get him back where he needs to be academically, but also get his social/behavior stuff in check. Because of everything else that is going on, I just can't deal with another year full of non-stop battles with the school and "team", thus hubby & I agreed to enroll Taz in "Hell High" for a year. Yeah I know....it's definitely NOT my "school of choice".....but we did have one bonus at the IEP meeting. They somehow "forgot" (yeah right) to invite one of the key ISD people....so, I decided to invite her as our "guest"....tee hee, yep nothing the team could do about it since I REQUESTED that she be in attendance....so she was there in our corner. She actually does support us and wants what is best for Taz, and she's a "take no crap" type of gal -- someone the "team" doesn't want to mess with. So with her assistance, we were able to spell things out very clearly for the "team".....we were very specific with what we wanted written in the IEP, how we want things approached going into the fall, what we expect, etc along with a whole list of goals and stuff.
The other thing....a very dear friend lost her battle with cancer. She had been the principal at Taz's former Elementary school and was a huge advocate....she had been such a great help during the difficult years. There was no cure for the type of cancer she had, thus the doctors had just been "keeping in under control" for the last 2 years. I had to visit the school to take something in for son #3's class, and found out that she was in the hospital and they were preparing for her to go home with hospice. When I heard the news, it felt as if someone had hit me with a semi truck.....I knew this day would come, I knew it from the moment she first told me she had cancer....but I wasn't prepared for it, I wasn't ready to let her go. She has always been one of my "go to" people, and when Taz entered middle school I would often stop by and chat with her about things.....thus I wanted to talk to her about the crap school, Hell High, how the IEP went, etc.....just catch up and chat like we always did, but that didn't happen. They were limiting her visitors to just family....so I never got the chance to see her one last time.
I decided to make a quilt for her....Lord knows I've told her a million times over the years just how much she meant to us, etc but I wanted her to have something in her final days....something that would remind her just how much we loved her. So I decided to make a quilt. I did a patchwork ABC design on the one side (similar to the one I made for our teacher friend who retired), and on the other I had hand prints of students past & present....I painted each hand print with craft paint (they were the "border" of the other side of the quilt), then in the center I painted "You held our hands for a little while, but you'll hold our hearts always". All 4 kids helped with the quilt....the 2 older boys helped cut out the fabric, sew the squares together, etc and all 4 helped paint the hand prints....even hubby helped. When it was finished, I took it to her best friend and asked if she could deliver it. I included a heartfelt letter.....her friend took it to the house the day they brought her home from the hospital. She read the letter out loud to her and they put the quilt on her hospital/hospice bed. Her friend told me how touched "V" was, as well as her family and how much the quilt meant to them all. She died a few days later....they closed school for the day and held a memorial service in the gym. The 3 younger boys and I went to that....they had the quilt on display for all to see. I kept it together for the most part, at least until "V's" mom came up and hugged me and thanked me for the quilt. Then I cried.....and I cried the whole drive home. I will miss my friend and mentor....I'll miss our visits and chats....I'll miss her wisdom and advice.
Well if that wasn't enough to make it a super crummy week, hubby had to work on Mother's Day and because it was such a long work day for him, he didn't stop to get any gifts for me (from the kids). I knew he wouldn't be able to go shopping, and the kids were bugging me most of the day....so I took them out to lunch and then shopping so they could pick out a gift. I ended up cooking dinner since hubby didn't get out of work until late....so pretty much my Mother's Day sucked....it sucks to have to buy your own gifts, spend the day dealing with non-stop B.S. and then cook a meal that was suppose to be cooked for you.....oh well, whatever....such is life right? At least the kids tried to make it a good day as much as possible.
I had hoped that this week would get better after the past week we had....yeah right....no such luck. I had a ton of stuff to deal with as per usual, had to run out and do some last minute shopping for son #2's birthday, got some bad news that night as I was in the middle of trying to frost his cake (will share that news later). Then I found out that some punk kid took a gun into the crap school this week (the school that Taz attends) thankfully no one was hurt....but talk about something that would make a parent freak out -- damn and this is the school that the team claims is such a great choice for Taz?! Suffice to say I was not pleased at all to hear that news, especially since they made it sound like it wasn't that big of a deal when they robo-called about it....then I hear more details on the local news about it. At least no one was hurt....
Then the other day I got a call from the school to pick up son #4 cause he had gotten hurt on the playground. I found out once I got to the school that he had fallen and hit his head, but they didn't know "how" it happened or if he had knocked himself completely out or not....how can they not know that?! WTF?! Where were the damn recess aides, who was watching these kids? It's not that big of a playground for crying out loud! Anyhow, when I got there I saw he had a huge bruise on his forehead and he was complaining of a stomach ache....great probably a concussion. Sigh.....he's ok now, I kept him home yesterday just to make sure and contacted his doctor....he was fine today so I sent him back to school. Now at this point I should be yelling "TGIF" right? Yeah not gonna happen....we had one more bad thing hit this week, news that is NOT good at all....but I can't say anything about it just yet. Suffice to say it will mean some major changes for us.....stay tuned, I promise to share more details within the next few days.
Friday, May 17, 2013
Wednesday, May 1, 2013
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.
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.
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