I have a 6 year old son who has been diagnosed with Fragile X Syndrome. This is a blog about the ups and downs after the diagnosis. "Some people come into our lives, leave footprints on our hearts, and we are never the same." -Franz Peter Schubert
Monday, November 5, 2012
Parents vs. School
As a parent, we fight for our children to have the best of everything. The best care, the best education, and the best life they can possibly have, because that's what they deserve. When something is getting in the way of that, we want to fix it as quickly as possible. We never give up and we never settle when it comes to our children. It's just IN us, to fight for our children's needs. I never realized that even just in preschool, we'd already have to be fighting for his needs quite like we are right now.
Logan is in his 2nd year of preschool. He is in a class that has some special needs children like himself, and some "typical" children. He loves every single second of school. He loves the bus rides, his classroom, his teacher, his friends. He loves singing along with the other students, and thinks school is pretty much the coolest thing ever. We had a great year his first year, and didn't realize it could change so much going into his 2nd year.
We decided to send Logan to school on the bus from day 1. He is big on routines, so we wanted the bus to be part of his routine from the start. Logan LOVES the bus. He would always get so excited when he saw the big yellow bus coming down the street for him in the morning. The bus drivers always talked about how happy and excited he was the whole bus ride to and from school. They always looked forward to Logan's big happy smile everyday.
The week before school started this year, I received Logan's bus pass in the mail. It said he would be picked up at 7:48am. School starts for Logan at 8:45am. I figured somebody made a mistake somewhere, since last year his bus picked him up between 8:20 and 8:25am, a full half hour later than this bus pass states. I called transportation to get this corrected, and the woman advised me there's no mistake, his bus ride is now about an hour long. I didn't understand why this would be the case, since we only live 10 minutes from the school. She then advised me it's because Logan will be picked up by a school bus that's going to a different elementary school, will drop the students off at that school, and Logan would then get off that bus and get on a different bus that will take him to his own school. I told the woman at transportation this is absolutely unacceptable for Logan. He is only 4 years old, he is special needs, this is not in Logan's best interest to be transferring buses and riding for a full hour every morning. She said there was nothing she could do and ended the call. I immediately called Michael and told him about Logan's route. He of course was just as against this route as I was. He said he would make some calls.
All throughout the day that day, Michael kept checking in with me and telling me how frustrated he was. He made call after call to transportation, every call was the same- there's nothing they can do. He was trying to talk to supervisors, and people were telling him he can't. He was hitting dead end after dead end. I called back to transportation to see if I could talk to somebody who might actually try to resolve this, and was treated the same way as Michael. They all kept saying there's no other routes available, they have other calls to take, that's it. Quit wasting their time was basically the vibe that we were both getting from transportation.
Michael ended up talking to somebody who works at the district level, and he reacted the same way, and ended up ending the phone call while Michael was still talking! That's when Michael got so fed up that he called the problem solvers at our local news station. Since nobody wanted to help us, he found somebody that will stand up for us. Jesse Jones at King 5 News gladly took this on, and immediately started doing research and investigating. He had never heard of Fragile X Syndrome, so he and his team started researching it and figuring out how it affects Logan. They came out to our home and interviewed us on the details of the route and Logan's disabilities. They have made us feel like somebody finally cares, somebody is finally willing to listen!
School has been in session since September 10th. Today is November 5th. Last week, we were told Jesse Jones and his team now have all their ducks in a row and are going to start contacting the school. The very same day we were told this, a public relations rep from the school district called me. He left a voicemail stating he would like to discuss Logan's bus route asap, since he was advised we are unhappy with it. He called twice that day actually. And the next morning. Then again the next day, and also emailed us. We didn't want to discuss anything with him until we talked with the Jesse Jones team first. When we called the representative back, we setup a meeting for him and Michael and I to discuss this further.
We had this meeting this morning. There was nobody there to represent transportation. He didn't even have a proposed new bus route to present. He asked us what WE propose. How would we know what buses are available to pick him up? We don't! We had happened to run into Logan's old bus driver from last year on the way into the meeting this morning, and she knew what was going on. She said her bus is right by our house every morning so Michael asked her if she felt it would be possible for her to pick Logan up after the transfer at the other school. She said she didn't see why that wouldn't work. We advised the district rep of this, and he said he'll check with transportation. One proposal he did have, was to compensate us for the mileage if we just continue to drive Logan to school instead of using the bus. Michael reminded him that since he is special needs, the district is legally obligated to provide transportation to and from school for him. Logan loves the bus, it's part of his routine, it's not fair that he can't have that. The rep said he had reviewed Logan's IEP for this year and it does state he is to have bus transportation, but it doesn't state he can't have a transfer or a limit on the length of the ride. Lesson learned for me I guess! I said I never would have even thought that a special needs preschool student would have a transfer, or an hour long bus ride, so why would I think to put it in his IEP that these are not okay for him?? I know for next year now though, that's for sure!
Another topic for the meeting was the lack of customer service we received from transportation. The rep said the transportation office receives a lot of calls every day, so they can't always give us the time we need to discuss things. I couldn't believe that was the excuse they were using! I told him I've worked in a call center for a bank, where there is a call waiting as soon as you hang up from the previous call, and you still have to be able to give that customer whatever they need. You can't say sorry Mr. Customer that you're having a problem, but we have other customers calling in right now so we can't discuss this anymore. That's ridiculous! I also asked the rep why this is the first time we've met him, when we were trying so desperately to find the right person to talk to back in September. Why did it take us contacting the media to finally be able to even START getting this resolved? He said it may appear that he only called us because Jesse Jones called the school, but he said he swears he was just given our file the day before Jesse called, and was getting ready to call us. LOL!! School has been in session for almost 2 months, and the first day somebody decides to actually help us just HAPPENS to be the same day Jesse Jones calls? I couldn't help but laugh and shake my head! Does he think we'd actually believe that?!
We left the meeting feeling like it was a huge waste of time, although it did feel good to finally have somebody from the school actually listen to us. It was nice to be able to tell him how poorly this whole thing has been handled. I know the only reason he's helping us is because the local news contacted him, so it doesn't feel THAT nice though!
Jesse Jones and his team are meeting with this same guy today (which is why this guy was in such a rush to meet with us, he wanted to be able to say he's working with us on resolving the issue). I am so grateful for a problem solvers program like Get Jesse on King 5 News, because who knows how long it would have taken somebody from the school to call us, if anybody ever even would have. It's hard enough for a parent to be able to navigate the school system with a special needs child, and when the school just doesn't seem to care it makes it that much more difficult to get what that child needs. I don't know why it always has to be the Parent vs the School. I wish we could work together better, rather than it being such a fight. Unfortunately, from talking with other parents with special needs children, this is how it always is. A fight.
I will update again soon on this issue, hopefully Logan will be happily waving from the window of his bus on a new route that works for him! If not, we'll just continue the fight! Logan deserves much better than what is being given to him, and we won't stop until he gets the best possible treatment!
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