Posts

[ArthurWankspittle]

My thoughts are with you.

[JamesVincent]

Quick health update. For the last week I have been walking without a cane completely. Still feel a little unstable at times but nowhere near what I was feeling. However, I have no real feeling in my left hand and my fingers still don't manipulate well. The only thing I really feel in my hand is a burning at my fingertips, especially when I touch something.

[The Observer]

But I notice that your posts here indicate that you have the ability to articulate and communicate clearly. So it is good news that you didn't get cut off from the world around you. And good that you are able to walk without having to need support or devices to get around. I feel pretty confident you are going to be able to lick the other issues as well. Stick with whatever physical therapy they are giving you.

[JamesVincent]

But I notice that your posts here indicate that you have the ability to articulate and communicate clearly. So it is good news that you didn't get cut off from the world around you. And good that you are able to walk without having to need support or devices to get around. I feel pretty confident you are going to be able to lick the other issues as well. Stick with whatever physical therapy they are giving you.

No therapy, done it all on my own. Yeah, it took a couple of weeks before I could fully write out what I was thinking and I still have issues typing at times cuz of my left hand.

PS: To try to put it in context I broke my leg on a jobsite back in '06. Knowing it was broken (I heard it break, wonderful sound, that) I got back up and finished my work. Got back in my work truck, drove back to the shop (about an hour), dropped my work truck off, got in my minivan and drove myself to the hospital. I had snapped my tibia right above my right ankle and torn everything on the outside of my ankle. The doc told me the only thing that saved my leg was the fact that I wear high top boots and lace them tight when I do heavy work. That extra support kept me from really doing a number on my leg. I just kinda shove my way through life at times, sometimes life wins and sometimes I win but I always keep moving.

[rogfulton]

Yeah, it took a couple of weeks before I could fully write out what I was thinking and I still have issues typing at times cuz of my left hand.

Stick with the typing. My wife spent an hour a day after her stroke. It took almost 8 months, but she ended up typing faster than before the stroke. Oddly enough, the doctor felt it helped her speech as well.

[fortinbras]

May He who blessed our ancestors, Abraham, Isaac, and Jacob, also bless James Vincent and restore him to perfect health so he may live a long life filled with good deeds.

[JamesVincent]

Yeah, it took a couple of weeks before I could fully write out what I was thinking and I still have issues typing at times cuz of my left hand.

Stick with the typing. My wife spent an hour a day after her stroke. It took almost 8 months, but she ended up typing faster than before the stroke. Oddly enough, the doctor felt it helped her speech as well.

I noticed that as well. I think the ability to articulate is the ability to articulate, no matter the method used. Writing was easier in the beginning since I couldn't use that hand at all, and I still have problems with it, my career as a guitar player may be over, but it helped me really see what I was typing.

[notorial dissent]

James so glad to hear you are doing well and recovering, know what a road you have. All I can say is keep plugging along, accomplishment sometimes comes in small steps, but once taken they are there.

[AndyK]

I noticed that as well. I think the ability to articulate is the ability to articulate, no matter the method used. Writing was easier in the beginning since I couldn't use that hand at all, and I still have problems with it, my career as a guitar player may be over, but it helped me really see what I was typing.

Hang the guitar the other way and switch hands Been done before by others.

If nothing else, the physical and mental exercise involved will force the brain to burn some new pathways and linkages.

[JamesVincent]

To put this in context Alyssa just spent 3 days in PICU at University of Kentucky's Children's Hospital.


We're home finally. We have some answers and even more questions then before so I'll cover what we know right now.

Alyssa is not having seizures, to the best of the doctor's knowledge. She is becoming Autistic. Years ago I had her tested for Autism because of her emotional state and she was found to be in the spectrum but not truly Autistic. Now she is manifesting all the symptoms of Autism. All the times she can't speak or speaks in grunts, the staring spells, the uncontrollable giggling, most of the things that have had me concerned are all symptoms of Autism. Her EEG is perfectly normal, or was when I left the hospital. The onset of puberty, with it's hormonal changes, and stress can very well be causing her to change. It is not a confirmed diagnosis, there is still a lot of testing to do, but 3 nuerologists and 2 psychiatrists agreed that that is the most likely diagnosis.

However, Autism does not explain the headaches or some of the other issues she has complained about. Those are still unexplained. They redid her bloodwork and did not catch the thyroid irregularity that they saw the first time so there are still many more questions to answer but we have somewhere to start.

[notorial dissent]

James I'm so sorry, all my best wishes to you and your family. This cannot have been a fun week in any way shape or form. I won't pretend to understand what you are going through, but my thoughts are and will be with you. All I can say is that it sounds like they need to check some more. Had wondered how you had all been. I've spent the last two weeks dealing with very serious hospital issues for someone else, so I'm feeling a bit run over myself right at the moment, so on that plain I have more than a bit of an idea of how you're feeling.

[The Observer]

It is tough to watch your child go through these change, through no fault of their own. Puberty is hard enough without the accompanying problems. The most important thing that you can do is to find that "happy spot" for your daughter, whether it be a place, an activity, or item that will allow her a refuge from her ailments when it gets to be too much.

[JamesVincent]

Hey guys, been gone for a few weeks. Wish I could say they have been really great weeks but that would break my no-lying rule. Wanted to update some things before they find me in a belltower somewhere (no clue where since we don't have one in this town but I digress).

Alyssa went back to school for 1 (one) day. She had two meltdowns, was sent to the nurse's office and then sent back to class. Neither time was I called. When she came home she cried for about 1/2 hour. Later that night she told MaryKay, in her own words, that she didn't want to live anymore. Mary said she started cackling and then burst into tears after saying it. I could not get her calmed down so I took her to the ER. We talked to the doctor there and to a psych aide and the next day Alyss was admitted into a short term crisis unit, where she was finally given some therapy. She spent 6 days there and was doing well. The nurses and therapists there confirmed that she is a high functioning Autistic. The day after she was sent home the school called and asked when she was coming back. I told them she wasn't until the school made allowances for her condition. For a week or so straight I was called everyday and asked the same question and I gave them the same answer. In the meantime I had gotten her in to see a psychologist and her normal doctor, who sent in an order to put her on home instruction. Today we go back to the Psych and have a little discussion, as I'll explain in the next paragraph.

Right now I am currently under investigation by Social Services for two things. One is Alyssa's absence from school. Even though her doctor ordered her to be home schooled the school board decided that that wasn't good enough, they needed a medical reason so she is considered truant and I may possibly be arrested and charged with this. Two, the school has made allegations of sexual inappropriateness since Alyss does sleep with me on occasions when she is having her fits. Meanwhile the therapists knew this and did not consider it even worth mentioning and were very surprised when I told them what was going on. To say I'm angry would be a mild understatement. After all the Hell the school has put me through in the past month I blame my happy pills for me not going postal.... yet.

I asked, over a month ago, for the school psych to meet with Alyss and help her. I also asked the school to get her started in in-school therapy at the same time, the same as Chris has. Both requests were completely ignored and Alyss suffered for it. Social Services and my ex both threatened to take my other two kids away from me while I was in the hospital with Alyss since there was no adult to spend the night with them. Meanwhile they did indeed spend one night alone, took showers, fed themselves, went to bed and woke themselves up the next morning and were in school while they were calling me to tell me I had to be at home with them. Quite frankly, my kids are more adult then most of the adults I have had to interact with, especially their mother. I didn't raise a bunch of whinebaby brats, my kids can take care of themselves, and have on more then one occasion. Shit, sometimes they do a better job then I do.

The good news. Fortunately we have a wonderful landlord who is not throwing us out for not paying rent. While this entire escapade with Alyss was going on apparently I missed an appointment about my unemployment so they canceled it without telling me, I only found out when I didn't get a check. To say we are pretty much bust wouldn't even do justice to the damage done to my bank account from all of this. Multiple 160 mile trips to Lexington and back in a work truck that gets 14 mpg (on a good day) adds up really quick and not having the time to get any side work done really drags you down. But we still have a good place to live and the landlord is sending me some work to help get caught up so at least we're stable(ish) for the time being.

Ya know, I wasn't even asking for much from the school, just that Alyss be home schooled until her psych eval is done and she starts therapy, so that we know exactly what she needs. Or that she immediately be put into classes with other Autistics until we find out what she needs. They refused to do either and stuck her in a normal classroom. So, whatever comes out of this, I did what I needed to protect and care for my daughter, the only way I knew how. I'm loud, large and obnoxious when it comes to my kid's safety and health and, when push comes to shove, I guarantee I can push back pretty damn hard.

[The Observer]

James, as the step-parent of a high-functioning autistic, I and my wife went through some of the same issues you experiencing. First, as you have discovered the public school system is unprepared and unwilling to deal with the issues that your daughter has. The teachers are not trained and not experienced in how to deal with an autistic child, especially a high functioning one. I don't know if you have gotten a diagnosis that places your child into a "special needs" category, but you need to pursue that route if not. That will force the school administration to deal with your daughter and develop an educational program to accommodate her disability. Or rather, "should force" - but it probably won't. The teachers and the administrators are going to resist any attempt to change their agenda for getting your daughter through the school system, despite the fact that this will be akin to sticking a large square peg into a round hole.

What all of that means is that you are in for a long-term fight. You will need to participate in joint planning sessions with the school to develop an Individual Education Plan (IEP) which is required under the law. And you will have to monitor this IEP and amend it as necessary to ensure that the school is consistent in its approach and expectations for your child. I am sure you are already aware how important that there is routine and a steady schedule for your daughter to function during the day. The teachers are not going to like it, they will see your daughter's situation as "disruptive" and will ignore it or change it without talking to you or your daughter. Be prepared for lots of calls from the school when they do this and she reacts to it, but make sure that you drive the point home with them that they deviated from the IEP. In the end, you may have to consult with an attorney who specializes in disability law to see what can be done to hold the school accountable.

Secondly, your daughter is suffering from the typical depression that high-functioning autistics go through, especially right before puberty and beyond. She does need to see a psychiatrist on a regular basis and get this treated and under control, so she can focus on her other issues and behavior.

Third, the melt-downs and anger issues are also typical. She is frustrated, lonely and cannot understand why the world is "rejecting" her, and why her "world" is constantly under "attack." This is the hardest part of dealing with an autistic child - bringing them to the awareness that they are going to have change their perceptions and outlook on life and society so they can function. My nephew, who also is autistic, has had to be confronted by his parents consistently, but patiently, so that he understands that his anger issues and melt-downs are not acceptable and cannot solve his problems. Due to their consistency on this, they have made considerable progress with him to the point that he is sociable, has had a few girlfriends and had went through the Young American performance school as a singer/dancer, including tours of Europe and Asia without his parents being along.

[JamesVincent]

That's one of the things that really gets me Obs. The school has a special section and teacher just for Autistic children, including a full sensory room. One of the first things the principal told me after Alyss got out of UofK. They have refused, up to this point, of starting IEP (very familiar, Chris has one because of his learning disability). Instead, they have started a 504 process, which does not include an actual disability, per se, more of a list of things to watch out for. Mary has one because of her seizures. And even the principal said he didn't think Alyss belonged in normal classrooms when he talked to her. So where did they put her? Right back in a normal classroom and lunchroom.

[The Observer]

That is because they don't want to take another child into the program unless they are forced to do so. I am afraid that your daughter is being seen as another drag on resources that the school district cannot afford to take on. So they will try to finesse her through the regular education agenda and hope that (1) she makes it through the year, (2) that she causes an incident that will allow them to expel/transfer her or (3) that you will get frustrated and transfer her to a private school.

There is no other way around this problem other than you standing your ground and making them get her enrolled in the special ed program. And even then, you need to keep a close eye to ensure that they don't just lump her in with the physically disabled kids and restrict her learning.

[AndyK]

Find a no-fee attorney or one who will work on contingency.

Take said lawyer into the school administration offices and announce exactly how much you are suing them for:

private school tuition
counseling fees
attorney fees
damages against every one involved in their personal capacity

and anything else the lawyer can think of that the schools should be providing ACCORDING TO LAW

Been there, done that, and won. Immediately.

The schools want to do as little as possible until they are forced to do so.

[JamesVincent]

Picked up my guitar and bass for the first time since before my stroke. I'll let you know how it went after my fingers stop stinging. Working on a song for me and Chris to do together.

[The Observer]

Good to hear. Guitars are great therapy, not only for the fingers, but for the mind as well.