Nothing new to report, we are down to just 2 days, 4 more sessions to go.....still praying to see some big changes. We were told that many children have changes within the 3 weeks following their last treatment. Please pray with us that we see more changes then.
She was busy today as she had HBOT, Physical Therapy and then HBOT !! I can't help but think every little bit of stimulation is doing something to her brain. She was up in her stander for almost an hour also. I think Selah will sleep good tonight.
I had an unusual call today. A social worker calling from the Pasco Co School System to set up an appointment for Sarah. That was great but when I asked about Selah, I was given the answer that the social worker had not been given Selah's case.... Selah was also not given an evaluation when the psychologist came last school year from the school board. He did one with Sarah, but only went in to see Selah. He didn't ask any questions or do any paperwork.
I have a feeling that you will be reading on this blog about another fight I will have to get into for my kids. I think they are going to try and tell me that they will not provide services for Selah in our home..... all I can say is "God help them" LOL I've been too nice in the past with the school system but now I'm tired of nonsense and their lack of effort to provide anything for my little ones.
Today I told the social worker she could tell her supervisor that I expect services for Selah and I expect things to get started in a timely manner.
It just makes me soooo mad that the Pasco Co School System has always fought me tooth and nail to get any type of services for Sam. Personally I know there are good teachers in the public school system and probably some good administration..... but we have had such a negative experience in the public school system. I just can not believe how awful it has been with the exception of one teacher.
You know when you have conflicts in your life, you should look and see WHY there is always a problem.....well...since I have 2 other kids in the private school system and have NEVER had any issue whatsoever... it makes me think the problem doesn't lay with ME! I think the public schools need to understand something that private schools understand....teaching is a team effort and the parents PAY the bill whether they actually hand over the check in the private school setting or whether they pay through their taxes to the public school system. In private schools (at least the two my kids have gone to) the parents were a huge part of things. Everything was ran orderly and everyone knew what to expect. Teachers and administration had a "can do" attitude. I've never felt like anyone was "against" me or my child. However in the public school system, that is exactly how I feel.
Why should I even have to wonder if the school will provide services for Selah? I do believe it is against the LAW, FEDERAL LAW for them NOT to do so.... I'm sure there will be some little loophole they THINK they can use.....so if any of them are reading my blog....just be aware, I am not going to allow something like that to be done to my child.
Yes I understand Selah will not go to college and may never go past where she is right now but in America every child has a right to an education.
Once this last week of HBOT is done, I have nothing to do but get started on this situation with the school system. Going to dust off my IEP book, make a few phone calls and get going on this next week..... I absolutely will have no hesitation to call the media about this situation and to publically blog about it nightly.... Believe me, I will keep all of you informed on this situation. We are in week 4 of the school year and until I contacted the school board last week, there had been no contact from them ALTHOUGH I had turned in the three little ones registration LAST SCHOOL YEAR!
I'm sure you'd think that a school system would do everything they could to make getting services for these three little ones a priority ....... especially since they (the school system) withdrew our son without permission last year making me have to do much more paperwork to get him back in.....and since we turned in a huge folder of paperwork to them last year...you'd think all three children would at least be in their computer system (no only one was) and since we'd had so many bad experiences with a particular teacher and had shown the Pasco Co School system GRACE in not bringing a lawsuit against them for our son being led around a school with a rope tied around his waist like a dog....a school that has floor to ceiling windows so all the children could see it happen....... You would think they would be helpful and work with us....You and I both would think that....but that is not what I'm seeing...... So......that's what I'm thinking about tonight.....
"Our life maybe a crazy life but it's our life" I'm married to a pastor of a small rural church, who is also the prison chaplain. We have 5 kids, each with their unique story. I love gardening & we all love the outdoors. Our life is not the way we planned it to be, but we are learning to trust God in every area. Come and read about our life as we live it to the fullest!
Yvonne,
ReplyDeleteDefinitely need to fight on this one. I think schools are scared. Madison went to school part time so she could go to therapies in the morning and went in the afternoon with her trach and being in the same condition as Selah. She got SO mujch out of it! She loved being around people and they did a lot of things that stimulated her brain like tactile (playing with shaving cream), sounds (music) etc. I really think she got SO much out of going a half a day. And, I know here they will have private duty nursing go with the kids so they need to let you do that as well. You do have rights. Fight on!
I know they would send her to school but we have no desire for her to be exposed to germs and get sick. Also I've seen some of the classrooms and they are a mess. I know our nurse would go with her but we just do not want to put her through all of that. In fact I talked with all our nurses about this and they all say NOT to send her to school as they have only seen kids get sick over an over again at school. I wasn't planning on sending her anyhow, just curious to what they all thought. We want Selah to receive in home therapy services from the school, which is her right. I know our doc will sign off for her to be seen at home to keep the risk of infection down.
DeletePraying for your battle. We put everything in writing with the words "Failing to educate my child" throughout and they seem to get it then. We have only had to threaten to use our lawyer once. Do you have a local family advocate organization? We have a parent group (PAVE) that helps advocate with you so you don't have to go it alone. I know you've done it before but it might be quicker to get some help. :).
ReplyDeleteI have thought about that too.....
DeleteHi Yvonne,
ReplyDeleteI'm a SPED administrator in a private school in WA and Selah absolutely deserves services under the law. Both her rights and your rights are protected under the federal law as well. There are dozens of kids similar to Selah that receive care here at home. A good website is http://www.wrightslaw.com/. It is a website that explains Special Education law and advocacy. You can also buy the book which has the law in it and each section is explained in normal language.
If I were to be completely honest, I could not agree more with what you wrote. Which is why I left the public school system.
I'd love to go to a Wrights' Law Conference! I do get their emails and will probably buy their book. I have an IEP book but I think WL would be better.
Deletethanks for your words and we certainly do agree!!
One of my classmates had a junior high classmate with similar needs to Selah (he had an anoxic brain injury in infancy) who was in an inclusion classroom with a nurse and him being her classmate inspired her to go on to be a special education teacher herself. (in Alberta parents have the option of full inclusion until high school when specific academic streaming is done). And yes a child like Selah is still capable of learning (I'm a graduate student in special education and have some experience with the system). Educational goals for Selah would probably be basic motor and communication goals such as gazing at a sensory toy, responding to being spoken to, encouraging expression of emotion (may eventually be a candidate for a form of simple augmentative communication such as an eye gaze board or indicating preference of a toy or DVD by eye gaze). One of my future research interests is actually communication and educational goals for children like Selah/have done a few papers on it and have read some of the academic literature on what is out there. I dislike the use of the term vegetative state (even though it is medically acceptable/the correct term) because I believe it creates more damage than the R-word even in that it diminishes that there is still a person there with feelings and likes and dislikes, just someone whose cognitive abilities may be inconsistent depending on the moment and who can learn simple associations and love their families, but may not be capable of higher level cognition. It is a term I would love to see go the way of the R-word in social acceptability as it encourages legislation and practices that treats individuals with profound cognitive disabilities as inanimate objects.
ReplyDeleteI like what you wrote. You put it in a very good way. I don't' like that term either, but what else can be used/ Some doctors use the term "minimum conscious status" or something similar but then other docs feel that is a step up from where Selah is....
ReplyDeleteDefinitely praying! That is just appalling....every child deserves an education, no matter what their limitations are. What happened to "no child left behind?"
ReplyDeleteI have to say though I am happier with my son in public school than I was in private. The private school was very good for my daughter (with the exception of bullying and alot of materialism) but my son needed a different environment. He's in a magnet school and *loves* it. He's gifted but also has learning disabilities--and his anaphylactic food allergies. We've had to be a bit pushy now and then but at least from what I hear on my "food allergy group" online, our county is better than some others when it comes to handling that issue.
I'm sorry you have to fight so hard--you have enough on your hands--but you're going to get them! Prayers for strength and for a speedy resolution!
Fight on, Momma!! Selah is blessed to have a momma bear like you to stick up for her. So many others may back down out of intimidation or even due to not knowing their rights (which is surely what they're counting on!) You are her best advocate! What are the future plans for after this HBOT series? Are you planning on future series? My nephew went through a series of HBOT for his autism, and seemed to have some improvements (though nothing that was earth shattering, in-your-face-amazing. They were more subtle improvements). But I think that it became cost prohibitive, so they didn't continue with additional series. I would imagine it to be difficult to try to work out the expense when they improvements are so subtle that you begin to wonder if it is actually attributed to the HBOT. At the same time, any improvement is STILL and improvement, no? Eeek! I don't envy anyone those decisions! Just know that I pray for you all at least daily, and know you will do what is best in the end.
ReplyDeleteI think a lot of the problem has to do with funding. The federal government mandates special ed but does not fully fund it. Many districts are having financial troubles and do not choose to spend their limited funding on training staff or providing everything students need.
ReplyDeleteFunding is a huge problem. The other issue is that they can only provide services that impact education, that's hugely frustrating to me as a speech pathologist, a reason I'm not working in a school. In-home education is usually a small amount of time as well, like less than an hour per day. I don't know about in-home therapies provided by the school, I've never seen a situation in which that was happening, but I'm not sure why.
ReplyDelete