The meeting was not as successful as I had hoped but I was reluctant to press for too much at the first of what I am sure will be several meetings. We were able to get a few more accommodations under the 504 plan, specifically working on verbal testing and more time to accomplish tasks. We also have the school working on getting Amber a study buddy to help her to read and comprehend the material (something Amber is not altogether in favor of as she thinks most all the students in her classes do not like her) and having all her teachers notified of her disabilities including her NLD and perhaps some modification in workload so that she is not up till midnight doing homework every day.

We did not seek to have her placed in Special Education (Though we had the IEP from Mary Bridge Hospital which showed her WISC III full scale sore at a 67 which is below 2 standard deviations below the norm and would be sufficient cause for SPED placement) as we felt, as did her psychiatrist that this would be viewed as a failure by Amber and just heighten her anxiety. The more anxious she gets the more her Dystonia flairs up and the more depressed she gets. No we did not want her placed in SPED though I believe she qualifies on several points like physical disability and mental disability and learning disability. Her WISC III full scale was a 67 for crying out loud. We are fully capable of fighting to have that option should it become necessary. She would qualify under several criteria so the schools reluctance to even go there will be the next fight.

There was one lady who did not introduce herself as she entered late who kept saying that because Amber had passed the WASL she would not qualify for SPED and the school psychologist as well as others at the meeting seemed to concur. Amber is doing well in her classes but this is only because she is putting in 110% effort and staying up to midnight doing her home work and we have retained a tutor to help with her studies a couple days a week for a couples hours each session. Without this motivation on Amber’s part and the extra help she would not be doing so well, and if I were to force the issue I am sure I could get her in SPED. But why fight a battle you do not want to; till it becomes an issue. Amber may need the benefit of SPED in the future but for now we will see how well she does with the new accommodations we have been able to secure under the 504.

I really do not think that the people at that meeting know just how prepared I am to fight for my daughter. Nor of the support I would be able to get from family and Dr’s in this regard. They seem to dismiss the need for Amber to have special consideration under the IEP and SPED as she is doing as well as she is. But what they fail to realize is that how well she is doing is a result of extra hard work on Amber’s part and extra effort on her behalf by her parents and the tutor and to some extent by some caring teachers who allow her after school study time. Without the extra help she would most likely be failing most of her subjects and that is why I want to keep the SPED option open. Besides next time I will be getting the name and position of the woman who showed up late and kept insisting that Amber's test results on the WASL precluded her from any SPED consideration.

I'd like to quote a brief area of the IEP done at Mary Bridge Children's Hospital and specifically by the Psychologist who wrote the report, that related to the WASL.

Quote:

"It is important to bear in mind that any standardized assessment which is time-limited, requires only brief periods of sustained attention and recall, and focuses on only one academic subject at a time, cannot approximate the multiple, complex demands of a high school curriculum. Thus the current academic achievement test results likely overestimate Amber's functional daily academic skills in terms of processing, comprehending, organizing, storing, and retrieving large amounts of information and engaging in planning and problem solving in a timely fashion."

"Unquote"

This flies directly in the face of those who would state that Amber's having barely passed the reading and writing parts of the WASL and having failed the math section would be enough to indicate she has the mental capacity to perform well in high school without the assistance provided by SPED.

I also think they (those at the school) fail to realize just how informed I am of Amber’s rights under the ADA, IDEA 2004, IEP and the 504 plan. I was willing to allow the school to dictate what accommodations they would be willing to put in place as what they suggested was a step in the right direction and if it is sufficient it would help Amber’s emotional state by not having been labeled as a SPED student. But I am willing to fight for whatever consideration I feel is appropriate to ensure my daughter gets the education she deserves. And even though my wife and niece left the meeting with a sense that the school was shutting us down, I left with a sense that we had received some concessions and that more could be had if necessary in the future.

I was also able to gauge some of the people there to see who was going to be helpful and who was going to be obstacles to overcome. In future meetings I will tailor my approach to each in a way that shows I can concur or compromise with those in favor of helping my daughter but can be a staunch and somewhat formidable adversary to those who think they can bully me. It does Amber no good for me to be an asshole and demand everyone bow to my wishes. Better to play the game and win than not play and have to fight all that much harder.

 I have in the past taken my fight for Amber to the highest levels of the States Education System and I have no doubt I would be willing to take it to the Federal level if necessary. I have plenty of ammunition in Dr’s reports and test results to use existing law to pretty much get anything I want if I am willing to push for it (and I am... if it becomes an issue). The wife and I have already discussed going to our State representatives to try and introduce a bill to change some of the restrictions under the States Basic Health Plan to get Amber needed services that are not currently covered. We have yet to act on these thoughts as we are waiting to see how well her squadron of Dr’s are able to deal with her pain issues, but should we have to fight for non-covered medical remedies such as acupuncture or homeopathic remedies we will. It is not so great a leap to fight for educational relief as well, if it does not currently fall under existing law.

The wife stated that she saw the school psychologist roll his eyes several times at some of my suggestions and she was quite perturbed by the late to arrive lady’s insistence that Amber’s test scores on the WASL precluded her from SPED consideration. I also noticed some reluctance on the part of some at the meeting to consider everything I suggested but was not so dissuaded as my wife, as I was throwing out a lot in hopes of getting something. I actually think, as first meetings go, we did fairly well. I am sure there will be more battles to come. And if necessary I am prepared to take the fight to the highest levels and even sue through the courts for services, if it goes that far. I do not think it will. The school just needs to know that we are very strong advocates for our daughter and cannot be placated by a few bones thrown our way. We will revisit the issue in a month and if there is more I feel that needs to be done I will draw another line in the sand and dig in for a fight at that time.

When we returned home the wife was livid. She immediately started thinking of different ways in which to get more considerations for Amber. She even talked of bringing a lawsuit against the school. That afternoon she took Amber to her weekly Psychiatrist appointment and apparently the Psych was not too pleased either. She is apparently going to contact the other Psych to get on the horn to the school and demand more accommodations. The Psych told Amber to work on homework till 8:00 PM at the latest and then quit, no matter if there was more to do or not. The wife wanted to set up a meeting with the school board and also the Dept. of Education at the state level and also call some of those TV stations that help people get results or at least publicize what grievance you have. I was able to calm her down and told her we said we would give it a month and so we would. If the Psych wanted to get involved that was OK but we would give the school a fair shake and if in a month nothing of consequence happened we would take the matter up the ladder.

You get more with honey than vinegar and so I was, at this meeting at least, willing to lay out my ideas and let the school dictate what they would be willing to do. At the next meeting, if there are problems, I will be a bit more forceful in my demands as to what I would like to see in place as accommodations and if necessary I will insist on SPED if that is the only way to get the necessary services and accommodations Amber requires . But I have to walk a thin line as Amber has it in her mind and heart that she wants to go on to college and SPED classes do not count toward college entrance. Therefore I have to try and get the SPED help without actually having SPED classes. This may be difficult and may require some finesse but I believe it is possible.

Amber was at this meeting, the first IEP/504 she has attended knowing fully what was going on. Her times at such meetings in grade school I do not think she was fully aware of what was being said as most went over her head. I was a bit disappointed that she did not speak up for herself and advocate on her behalf. She needs to get better at putting herself out there and talking with some semblance of command in her voice instead of being so demure and low voiced. Even when answering direct questions she was barely audible and seemed to shy away from being direct in her response having said “I guess so” instead of yes or no and expounding on her answers when appropriate. It is something we will work on for future meetings. She needs to realize she is her best advocate and in time we, her parents, will no longer be able to advocate for her and she will need to have the ability to do so for herself. Perhaps as she matures this will take place as a natural progression but in her case she does not have the luxury of a great deal of time. She needs to find her voice as soon as possible.

I have to say that the Psychologist at Mary Bridge that did the testing and wrote the report for the school was OUTSTANDING. She gave Amber a battery of tests, I believe there were  eight given Amber and three directed to her mother, eleven all totaled, and she wrote an exemplary comment /report giving her conclusions as well as suggestions. I was very impressed and she even went so far as to state she would be willing to see Amber again up to her 21^st birthday, should it be necessary, and was willing to talk with any at the school who might have questions of her. This person is one of those rare people who actually care for their patients instead of viewing what they do as just a job. I can’t thank her enough for her efforts and if she had given me permission I would have placed her name in here so that others may have the opportunity to contact her. Should I have further contact with her I will ask if she would be OK with my mentioning her on this website.

Of other note Amber went to her first WA-PAVE Inclusion Program Meeting and was thrilled. She enjoyed being with her peers and smiled most of the time according to her mom. She even made a friend with right hemiplegia with whom she has had several phone calls with since the meeting. She is already looking forward to the next get-together. It is quite a drive from our home but if it brings her some semblance of happiness then it is worth it. She also is on the list for volunteering at the YMCA where she spent a week as a volunteer for helping small children do gymnastics and Amber greeted that with enthusiasm as well. She is looking forward to future opportunities.

Of a sadder note the Dystonia has spread to her back and her pain is growing. Sometimes the back spasms and pain keep her immobile and that scares her. She is also having some difficulty moving her left knee and has actually fallen a couple times as a result. The Dr’s have yet to find a medication that is effective and we are going to be looking for another neurologist soon if we do not get better results. She is taking more pain meds which is interfering with her studies and we are hoping the TENS unit will give her some relief.

So there was some good to report but just as much if not more bad. Amber is having a lot of anxiety that she may be wheelchair bound if things keep progressing. I hope that we find the right combination of meds to prevent this concern from ever becoming a reality. But for those of you who have children with CP and are thinking of bringing a suit against a hospital or doctor just bear in mind that things can get worse as time goes by and do not settle for a paltry sum as I did. They will try to get you to just look at the current condition of the child but you have to consider what may be in store for the future if things do not go as well as you hope. I failed in that regard and now Amber must pay the price. I’ll never forgive myself even though I know I did the best I could given my knowledge at the time.

I have been informed by OSPI the States equivalent of the dept of education special education department that though the WASL and current grades can be used in an evaluation they cannot be the sole consideration for an IEP and so Ambers learning deficits and physical handicaps will be in play as well. So much for the late to arrive lady's, who I have since learned was one of the VP's at the school, constant mantra of having passed the WASL disqualifies Amber for SPED. I have not changed what I am asking for, I have only put it to paper so that there is a paper trail and should we wish to go to mediation or court we will have documentation to back us up. I do not expect the school will do any more than they did at the last meeting and so am preparing for a fight. I am gathering information and seeking out advise from everyone from local parents organizations to the Federal department of education. 

I have a call in to WA-PAVE in hopes of getting an advocate that is more qualified than I to help fight the battle and the wife has begun talking with her network of friends with disabled children and the doctors to see what she might glean from their experiences. We are starting a file of those tidbits of information we feel might be useful and are preparing ourselves for another fight through mediation and the courts if necessary.

The problem is this all takes time and I fear by the time we actually get any concessions, Amber's school year will most likely be over or nearly so. But the fight we do now will help to get her services in 12th grade.

I'm sure we will have ruffled more than a few feathers and made a few enemies by the time this all shakes out...but I do love a good fight.

 Amber's spasms have gotten worse, she was falling more often, and as of Oct 20 2008 she has now an electric scooter/wheelchair at school that she rides from class to class. Her ability to walk is so severely impacted that she might need one just to get around the house soon. We were able to get one off craigslist for a good price ($600.00) and though we might have to cut back on some things to make up for the cost, it was necessary.

Her mother is now taking her to and picking her up from school every day.

She has begun seeing an acupuncturist once a week that we are having to pay for out of our pocket as the insurance will not cover the cost but we are hoping it will do some good and then we might be able to get DDD to cover the cost if we can show it helps. I know, wishful thinking, but we have to stay as positive as we can.

We also had her in the emergency again cause she was not able to relieve her bladder and they had to use a catheter to drain her bladder. The Doc thinks her Dystonia has reached the muscles that control her ability to go and that she might have to either make frequent visits to have her bladder drained or have a permanent catheter installed. We are hoping that the medication the Doc gave her will make this debilitating problem go away but are preparing for the worst.

To say the least Amber is severely depressed. In the span of 3 days she got the wheelchair which was a real blow to her, she had to have her bladder drained and is having to deal with that, and the school wants her to be qualified under SPED, more for them to receive federal money than to benefit Amber. But should she decide to get that IEP testing and SPED I will be fighting all that much harder to ensure she gets to graduate without her ability to go to college put in jeopardy and gets other services that are available under the IEP and SPED

At her 504 meeting on the 21st we found the school a bit more receptive to what we were asking for, but got no commitment for any to actually do anything. They were more willing to listen and were more agreeable but did not make any commitment to actually do anything. The School is wanting Amber to consent to being in Special Education. They want her to take more tests for qualification. This is just so that the school can receive federal money. Under the 504 they do not get federal monies but they would under the IEP and SPED.

I have to let them know what Amber has decided by tomorrow or the case will be closed. Amber so far has not made up her mind but I am thinking she will not consent to the testing and being labeled a SPED student. I know that this designation will not affect her graduation nor her ability to get into college so long as she does not have any SPED classes. If she continues to go to regular classes she can use the SPED designation to allow her to receive PT and OT services as well as a tutor in school. However Amber still is adamantly opposed to that SPED designation.

There was talk of a shortened school day with fewer classes but this would mean she would not graduate with the rest of her class and Amber nixed that idea quickly. Because next year the school is going to a 6 class a day schedule and she has sufficient credits to graduate, if she continues to pass her classes, she will be able to take a free period each quarter and if she does she could take advantage of the study hall and the presiding teacher to get extra help/tutoring but it would not be one on one, for the most part, as others will be in the study hall as well.

A couple of teaches attended the meeting and I am told that they have instituted accommodations of their own accord to help Amber not have to stress so much and one has said he is going to talk to the others to see if he can get them to do as much. The school, although acting concerned and hearing our requests have not formally agreed to anything we asked for. They want her qualified under SPED for that federal money before they commit any resources. 

The dominant theme was what accommodation they now needed to make to get Amber out of the school if there was an emergency, cause she is now wheelchair bound. I thought this could be better left for them to discuss at a later time between themselves instead of wasting our one hour meeting about her 504 accommodations on this subject. Hell just throw her over your shoulder and carry her out if it comes to it. This was a no brainer but a good 10 to 15 minutes was wasted in this discussion.

Also everyone was acting "concerned" about her health and some ideas were floated about reduced school day, taking less classes, and the like which would mean Amber would have to go to school longer and not graduate with her class. She was opposed to this. There was also talk of staying after school to get help through the AAR teacher (study hall) but Ambers schedule of Doctor's appointments and therapy does not lend itself to much free after school time. In that same vein Amber is going to start OT once a week in the morning so she will be missing that 1st period class and possibly part of the 2nd period class on whatever day they come up with. I hope the teachers make accommodations for this or I will be back into another fight.

I could file a due process complaint but I doubt I would get anywhere. Sure I have Dr. Dorsch's 19 page report and letters for her pediatrician and therapist but in the scheme of things there are no teeth in the 504 plan. By that I mean there is no way to make the school do anything so long as they follow procedure. All they have to do is say they are doing all they can given their budget and that will be the end of it. The OCR will not fight for individual accommodations only on procedural issues that is why I have to let them know about SPED by Friday cause they need to meet their procedural guideline of 35 days from the time I put in a written request for the IEP. The IEP and SPED would allow me to fight and probably get some accommodations but if Amber does not want it, I will not force her to get it.

I have made quite a few enemies in the past month in that I have been a bit more demanding of the school as well as having contacted my state congressman and senator and have been in contact with the state OSPI and have ruffled a few feathers. I really do not care if any like me, so long as they do something for Amber. So far the talk is going her way but we have not seen any action and so I think at this point I may have done more harm than good by involving those outside of the District. Time will tell.

Of another note, that friend she made in the WA-Pave inclusion program turned out to be a bad seed and Amber wants no part of her anymore. She however has found another closer to home that she is going to spend a few hours with on Saturday. I hope this one turns out better for her sake.

I contacted WA-PAVE for advocacy help but the person I talked with had attitude and was very adversarial and kept telling me I should read the literature she was going to send me about the 504 and my rights. I tried to tell her I knew as much as she on these issues but she just got all the more adversarial so I just said send the information and hung up. As it turns out everything she sent is already on this website so she was of absolutely no use whatsoever. I was told that they would only provide a 'volunteer' parent advocate if we took it to a complaint. I can fight based on the State and Federal laws and the rules established by the OSPI and PSESD just as well as WA-PAVE can. I was only hoping for a little help, a little more weight to my arguments, but it would seem I can do just as well on my own. They didn't tell me anything I didn't already know. They may be of benefit for those less educated of the 504 and IEP but to me I'd rather not have to fight on two fronts. I do not need their attitude and adversarial crap right now.

I again contacted OCR to find out if there was anything I was missing and got some very good information about PSESD and 504 accommodations here in western Washington. I have posed this information here: Parent & Educator Guide to the 504 plan.  Use the  Appendix E section to find what might be available for your child. Remember that the 504 plan is a Federal mandate and what one school system, district or State uses as a guide can be argued to be an available accommodation for any student (which qualifies) in any school system (receiving Federal money) any where U.S.A.

My son had his last football game yesterday so now he can be home sooner to help about the house . So the wife is going to make an appointment for me to go in to see the Doc about getting my leg operated on. They will likely have to shorten it a bit and replace the screws but if 3 months in a wheel chair means I'll be able to walk again without excruciating pain them I am all for it. One leg will be shorter than the other when they are done but I can always wear a lift in my left shoe or have a new sole attached. Best to have it done now, over the winter, than later when it will affect my being able to do other things. Besides it will get everyone off my back, those  jumping me for not having it done sooner. I had things to do!!!!

I am not the least bit happy about the way things are shaping up for Amber both physically and academically but so far I have done all I can. Amber is old enough to make some decisions for herself as regards her future and if she does not want SPED I am not going to force the issue. She is the one who will have to put in the extra effort and deal with the pain that the added stress will cause. She knows the benefits and the consequences and whatever road she chooses to take, I will support her in that choice.

Though I have to say it is becoming increasingly more difficult for my wife Tami and myself to cope with all that is going on. The setbacks are starting to get to us and the fears of the future are becoming all too real. Still if Amber has the courage to go on, then we can do no less.

Well, I got a call from Amber's psychologist yesterday and she stated that she thought it would be a good idea if Amber was to get the IEP as it might allow us to get her qualified for services that the school was reluctant to provide under the 504 mostly because of the financial obligation of the school and being under the IEP would provide the school Federal funding and so they would be more likely to institute some of what we were asking. Although what we were asking was available under a 504 there is no obligation of the school to provide anything. Under an IEP they would be required to make provisions. I told her I had already told Amber I thought it was a good idea for her to take the testing but that I would mention it again. But  the final decision rested with Amber as I was not going to force her to do it if she did not want to. It surprised me but she decided to go ahead and do the testing for the school IEP without my having to do any more than ask if she wanted us to fill out the forms or not.

 I was also asked why the school did not use the extensive testing that Dr. Dorsch had already provided and could give no answer. They ( the Psychologist and district) apparently wanted to confirm the findings for themselves was all I could think of to be the reason but I did not know for sure.

She also talked of trying to get Amber to be a better self advocate and to not allow her to 'pawn' off stressful decisions on us but have her try to make them for herself unless it was an imminent decision that needed to be made and Amber was unable to make it. We have been trying to get Amber to better self advocate for some time, but when stressed she tends to withdraw and does not purport herself well. She also does not ask for the help she needs whether because she feels it will show weakness or she is too shy or introverted, I do not know.

We talked of trying to get Amber to make better social decisions in her dealing with classmates. To give her some guidance in how to respond to questions of her condition or her use of a wheelchair or other situations. It is difficult as we are not present during these exchanges and so do not know how Amber is currently fielding these questions and others, so do not really know how to help her to do better. I would imagine she is being teased and would also think that if she is not cowering and withdrawing that she is lashing out and either way it would not be acceptable behavior nor would it gain her any friends.

I've already told her many times you often get what you give. That being, if she holds her head high and smiles and greets people in a friendly manner she will likely get the same in return and it will be easier to make friends if they see her as someone they would like to get to know instead of someone who is standoffish. However I cannot hold her hand and be there to guide her. She needs to find her own way out in the world. I can only make suggestions she needs to implement them. I can truly understand why she might not want to be very outgoing as she has had a lot to deal with both from her peers as well as the administration at the school (not to mention her own physical difficulties and pain). It can make one very wary and defensive. Not the best way to encourage friendship but a great way of defending against being hurt emotionally. The problem is she will never find friends so long as she keeps a barrier between herself and others.

I found out that, that boy she was seeing last year had yelled at her and made it out to be her fault that they were breaking up. The jerk wanted to stop seeing my daughter and instead of being  mature and telling Amber that he was either no longer interested in her or that he had found another or that he just didn't see them as a couple, he has the audacity to yell at her and make her feel as if the breakup was her fault. Not only was Amber upset of the breakup but also upset cause of the way this ass had done it.

 I can remember she blamed me cause we (her beau and I) had a talk in private the day before. I had only told the turd that I wanted him to respect Amber's wishes and not impose his will on her if she did not want to go as far as he did. I told him that so long as he respected her, I had no problem with them being together. I do not think that was an unreasonable request of a father.

Water under the bridge.

At any rate when Amber returned from the acupuncturist  yesterday she seemed to be doing a bit better so that was good. She did go to bed a bit early cause I was joking around with my son and we were getting a bit loud and she couldn't take the noise as it was causing her Dystonia spasms to act up. I felt bad but our son is a part of the family too and we need to spend some time and attention on him as well. Amber could have asked us to tone it down but instead hollered at us for making too much noise and went to bed. Under other circumstances I would probably have gone to her room and told her that she could have asked we tone it down , that it was rude to holler at us and disrespectful to then leave the room in a huff. But because I am becoming more sensitive to the pain of the spasms she has to endue I did not want to exacerbate them by making a big deal out of nothing.

This encounter got me to thinking. I have seen Amber bow her head avoiding eye contact and not saying much to others and if she is also lashing out at those who approach her this could be why she is a social outcast. She needs to accept herself for who she is and move forward. I know her to be a very caring and loving person with a great deal of desire to fit in and be a part of something whether it be a school activity or just a group of friends. However she needs to be proactive in holding her head high, smiling, talking with others and showing that she is a person others would very much want to be friends with. You can't do that with the attitude she projects. I know it is difficult, especially with the pain she has to endure and those who would tease her, but she needs to find herself and let that beautiful inner spirit out for others to see.