[Stormy]

Elaine,

I hope you don't mind my interjecting some advice. I know your questions were of Kara. But I have become a Parent Advocate and have been where you are going. And I think I can give you some advice and direction.

1st thing I advise of parents is to read IDEA. The federal regulations that detail what schools are and are not required to do. Keep in mind, what is written in law still is intepreted. So your understanding may be different then the schools then the judges. But knowing that law is so important.

2nd thing I advise families to do is nurture their relationship with the school. I know, that doesn't seem right. Many parents want to force the schools to do what it says in IDEA. And you can still do that, but don't go to the school and the school system angry. Bring them cookies and ask to see their classroom. Donate a book to the library and ask to talk to the counselor. If you have started out with barrells loaded (like I did) it's ok, you can still go back and make things better. (This is what I did to repair the mess I made from my being emotional rather than tactful) Go to the teachers, principal, director, anyone and be sweet as sugar. Ask how you can help, allow them to guide the discusion. Listen a lot. I have found in our school system the people I deal with want to educate me. At first I was offended, they didn't even know my child and I had not only professional background that matched theirs, but now lots of experience. But I have learned that they need to teach me, not that I learn anything. But they need to feel like I respect them. And I do have to respect them. Deep down I have to feel like their heart is in the right place, but maybe this is new to them, but I have to believe they want to do what is right too. So, do what you can to nurture the relationship with the school. Let your lawyer be the bad guy. You be the sweet angel who doesn't know what a pain in the neck that lawyer you hired is.

3rd Do some research and read some good books to help you in your journey. My favorite book is From Emotions to Advocacy by Pete and Pam Wright. I have met them and done their advocacy training and have to admit I think they are right on the money. In fact, I used PEte's tactics when I entered a 6 hour mediation with the school. Just me... and their lawyer, assistant superintendent, director of special ed, supervisor of special ed, principal, teacher, special ed teacher, speech therapist and administrative law judge. We had a lawyer but she couldn't stay more than 3 hours...my father who is a minister and former school administrator had to leave after 3 hours and my husband had to go back to work. So it was long, and mediation was successful and we left there with an agreement for the school to get specialty training for my son's teachers, inclusive setting, more speech and even more. I gave up social skills training for him at this time and some other minor items.

4th Know your rights to formal complaint, mediation and due process. I have used these avenues myself and found them to be very effective and benifitial to getting to where we wanted to be.

5th Lawyers...a good special education lawyer is worth their weight in gold. But keep in mind that you will still be on the front line. They are just your backup.

6th have faith. Many parents have gone where you want to go. Some of us are the trail blazers in our local school system. Our school system didn't have a program developed and planned to meet the needs of chidlren with autism. After a year of hard work on my part and theirs, they are starting that now. But it is possible, but know it is work. Many times i felt beaten and wanted to give up. Just know it is possible and find support in others who have done it too.

And you mentioned the financial side of this. I too felt so at a disadvantage because we are a low income family. I can't work because of my children's needs and so my husband works. And his job pays a very low salary. So we were able to find a lawyer who worked for us pro bono. It took a lot of calls and talking to a lot of people as well as patience. But in the end an angel fell from the sky. Until then, I became a trained advocate and made my job working on behalf of my son! I was determined to prove that parents who have lower incomes can win in this system too. It is harder, I will admit. They tried to bully us and they did sick their lawyer on us in that he came to 4 of the 7 IEP meetings we had in 9 months. But we won because we vowed to our son to never give up on him.

Stay strong and if you need support PM me and I will send you my e-mail.

GOOD LUCK!!!

[Elaine26]

Stormy,

Thanks for the advice, it never hurts to have opinions from people who have been where I am. Honestly, it's talking to other parents that gives me alot of strength to know that even though it's a hard situation it's not an impossible one. Sometimes that "impossible" feeling can be overwhelming as I'm sure you understand.

Yeah I have kinda gone in fists first & angry. I guess all this time with no result is getting to me and frustration is setting in. I agree that it seems that the majority of the therapists & teachers are good people & that they probably struggle with the system as much as I do. I know that our small town does not really have the money to draw in a good teacher and that they have tried. At least to some extent.
It never crossed my mind that teachers want to teach....... I can make them feel like they are in charge and probably get better results with sugar than vinegar so to speak. I'm in real estate sales & my husband always says that I could sell an air conditioner to an eskimo if I put my mind to it. I'm gonna have to start using those skills to my advantage. Why didn't I ever consider that before? Anger can be stronger than logic when it comes to my little man. I tend to get angry quickly when someone tells me that he can't have what he deserves. I need to learn to calm down a little when it comes to this. What can I hurt? I've gotten nowhere being mad.

Our lawyer specializes in childrens rights, especially when it comes to the school systems. We think we found a really good one, which in itsself was no easy task. The wait was worth it though.

Where can I find more information on IDEA? Up until now I have focused mainly on the No Child Left Behind Act. I don't even think I've ever heard of IDEA before, but it sounds like something I NEED to look into. How did you get started as an advocate? I obviously am to some extent being a parent, but you really know your stuff. I laughed with my husband earlier today because I originally posted on this site to attempt to find my bmom, but have gotten a wealth of information that I wasn't even looking for here about my son. Blessings come when you expect them the least I suppose.

Thanks again for all your help & please don't ever feel like you would be stepping on my toes by offering advice. I really do appreciate it.

Elaine

[Kara J]

Hi Elaine!

Stormie really gave you some GREAT advice. People within the school ditricts really begin to listen when you are cool, calm, collected and KNOW the law... in fact, it's pretty scarry to them because lots of administrators are familiar with them, but don't KNOW them. On their behalf, there are so many laws that it would be very hard to know them all, and deal with the day to day goings on within the school.

I feel that you did the right thing to hire a lawyer... that is another thing that really helps them to listen. Don't get me wrong, I am in no way downing the districts, but I feel that it's time they put the children FIRST.... that was the sole purpose of my education. I want to be with the kids and I want ALL of them to have what they deserve.... Lets face it, the districts always find the money to purchase new football uniforms and equiptment... it's about time they spend some of that money in the elementary schools and on what our "special needs" kids NEED.... didn't mean to rant ...lol...

I LOVE my school... they are soooo child oriented and that's why I'm there.... the children and their needs ALWAYS come first.... I just know what a headache some of the other schools are... even some of the schools within my district.... (I teach in Texas and in a district with 3 elementary schools)

To answer your question about more than one child with autism within a classroom... I don't know what the law states about that, but as a teacher it would be virtually impossible to give all that students what they need and deserve with more than one. In my situation, I had 15 "regular ed" students, 1 child with autism, and 4 "special ed" students who were in and out of my classroom at different times durring the day. True, "A" had a full time aide, but her job was to assist "A", not teach her. I had to have several lesson plans, because "A" was actually functioning on a 1st grade level within the 3rd grade classroom, and I teach ALL of my students science and social studies reguardless of regular ed or special ed. As you can tell, I had students performing from a 1st grade level through about the 4th grade level. We did LOTS of multi-tasking and group interaction. I could get my students busy working in cooperative learning groups on a lesson we just completed, then work with "A" one- on- one. Afer I finished her lesson, her aide would help her work on her task within her learning group, while I went back to the whole class instruction. "A" was always part of a cooperative learning group, and was never singled out, but her intructions had to be given differently... lots in sign and short steps. I also had to make sure she was looking straight at me or she would NEVER understand. You guys KBOW how har that is sometimes! More than anything else, her mother really wanted her to work on her socialization. She ued a weighted lap pad while at her desk, a bean bag for reading time when she would begin to get frutrated with us...lol... and we even had a small trampoline in my room for her. It was GREAT... even when she would have a meltdown it never really seemed to bother the other children... they just understood... that was "A". Having these things readily available and within the classroom allowed her to remain with us and for us to work on her socialization. I don't see where a padded room all the time for your son is necessary. I know that some "fits" are terrible, but were these types of items offered to him within his classroom? Of course, once you know your child, you know when things are going to get really bad... I feel that having these things allowed us to bypass many meltdowns... of course, there were still some that were unavoidable! That's when the room where he would be isolated would come in handy. We had a room for "A" that had things she really enjoyed in it. Her aide would bring her in there when she was having a BAD meltdown and let her watch her favorite movie or read her favorite book in the dark... it usualy always worked for her unless she was in pain and couldn't express it.... Just depends on your child and what works for him... that's where it is up to you to tell his teacher what works... if not it may take half of the year for her to figure it out... been there, too!

After all the rambling, I guess hopefully now you can see why it would be soooo hard to teach more than one child with autism at a time... probably not impossible, but difficult. I just have a hang- up and feel that I must alwys give 150 percent... there is NO WAY I would feel adequate enough to do it!

[Elaine26]

Yeah , that makes alot of sense. I can see where it really wouldn't be fair to the teacher, the child, or the other kids in the class. I definately don't want to make things harder for anyone. I just want to see my son get a learning environment that he deserves without taking away from the other kids in the class.

As far as the school offering a seperate room where Dylan could go during meltdowns....NEVER. They have never even offered a classroom, with the exception of the one that I mentioned in a previous post.
I really like the idea of having some of his favorite things with him in the room (if we ever get one). I know it sounds like I'm missing such obvious answers. I suppose it's because I've spent so much time fighting to get him in school that I haven't really thought about what to do once he's actually there. Sounds silly huh?

How long have you been teaching? I ask because you really seem to love wht you do. The only time I have talked to such an optimistic teacher she was less than a year out of school. Typically I love dealing with spanking new teachers beacuse they are ready to do anything. I tend to find a sarcastic or know it all attitude from older teachers. Almost like they are thinking "what do you know about teaching a child".
I hate to make it sound like I have such a problem with the system. I count my lucky stars all the time that I live in a country where I can fight for my son and challenge the system without penalty (other than frustration..lol).

Also.....STORMY....in case you read this I may have a little advice for you. My son's therapsit suggested something wonderful the other day to get Dylan into unfamiliar places. It's kind of a long process but I think it's a great idea that could work in just about any place. I'll use my example for when Dylan is ready for school.

You make several trips to the place with your child in the car. The first time you just drive by saying something like WOW as you go by. Next time stop briefly by the front door saying WOW again. Next time park & walk to the front door but don't go inside (unless your child wants to). Next time just walk in the front door and don't try to push the amount of time spent, let the child decide what they are comfy with. You can see how the process works. My son's therapist says this lets them see that there is no reason to be afraid and you have made a new place fun for them. She says eventually he should understand that new places are nothing to be afraid of. With school she suggested that when stopping by the front door that we have his teachers meet us there and say hello to him and make him more familiar with them a little at a time. She even said that when walking him to the front door that it would be a good idea to let the teachers do it if possible. That would slowly introduce them to him as an authority figure who he can trust when his mom & dad aren't around. KARA ~ this could probably be used inyour school as well to help kids adjust.

Thanks again everyone for your replies. Every little suggestion makes a difference.
Elaine

[Kara J]

Hi Elaine!

Thanks for the advice on getting the children familiar with school... I'll give the tip to the diagostition.

As far as my teaching career, I will begin my 7th year in August. I'm not new to this... just an old softy! lol

[keyze]

I have a problem not related to autism. Doctors do not want to diagnose a problem because then help could be obtained. I have even been refused to be seen because if the diagnosis led to disability the doctor did not want to treat another social security case. I am not sure what is causing the problem in the United States but I have my guesses. It has to do with all social security money being used for everything but social security. It could also be greed that social security will not pay the profession enough during the lifetime of the patient once they are on Social Security with a life time problem.

[Sounddds]

Hi,
I have a friend with autism who I went to respite with for 4 years and had such a awsome time with him!!! I am now thinking of adopting a child with autism!!! and I loved your post! do you have any advice as far as the parenting skills go?





Thank you.