Thursday, July 30, 2009
Yesterday was Jaymes long postponed, long avoided ABR test. I have no clue what ABR stands for, but it's basically a hearing test done while the child is sedated. They measure response to sounds by looking at brainwave patterns. Something like that. It's what they do for kids who are too difficult to hearing test any other way. He was supposed to have had an ABR back when he was 2, but he was perpetually ill and could never be safely sedated. I finally gave in and agreed to get it done, and so off we went yesterday. The original appointment was supposed to be at 6:30am. On one hand, I'm thrilled they changed it to 8:45am, because I am not a morning person. On the other hand, Jaymes was starving, thirsty, and did not understand why he couldn't at least have a glass of water. It was hard on him, and of course there were a lot of people eating and drinking in the waiting room. He took it really well though, he didn't scream or fuss, just snuggled up with me and slept on and off.
I took his speech device with me, thinking that if his throat hurt from having a tube shoved down it, he could use the device to ask for whatever he needed. I'm glad I did, he spontaneously picked it up several times and made requests. He demanded stickers from the nurses, who were happy to oblige, and in a short time he was covered head to toe in stickers. That boy LOVES stickers. He also made the device say "doctor" when the doctor came in. I was super impressed. He is so smart.
They got him all nice and set up in a bed with a heated blanket, a portable DVD player with Spongebob, and a stuffed shark of his very own. Jaymes was pleased, other than the whole wanting to eat/drink thing.
When it came time to take him back, it became apparent that this would be an issue. Jaymes was very, very afraid. I tried handing him to the anesthesiologist, but Jaymes did the spider monkey cling. Tried putting him in a wagon, he clung. Finally they decided that they were going to break rules and let me come back with him. They brought out the most godawful weird looking suit (he called it a bunny suit, LOL), little booties, and hair net thingy. No, there are no pictures, I looked like a moron. Thankfully no one but jaymes and the docs saw me!
Went into the surgery room, Jaymes clung. They put the mask in his face and he strugged a little. I was mildly concerned that because I was getting a face full of the gas myself, that I'd end up knocked out with him. Luckily this was not the case. Jaymes went out, everyone seemed shocked that I had not panicked, fainted, or screamed.
An hour later, they came and got me, and again broke the rules. Apparently I'm one of the first mom's ever allowed to come back into the room that they go in before recovery. He still had the tube thingy in his mouth, and was totally out. It was a little scary because he was dead pale, but it's generally hard to freak me out. It helped a lot to have Jaymes wake up with me right there- he was much less upset than he could have been.
In general, the staff over at Hawthorne Surgery Center did a wonderful job. They went out of their way to accomodate Jaymes and his special needs. They took that extra time and effort to think about what Jaymes would handle best, and that is just wonderful. I'm so happy to know that you can still find this level of patient care these days. He was treated like a VIP, and it helped a lot.
Jaymes woke up and guzzled down 2 huge cups of juice and a popsicle. Both I and the nurse should have known better, but of course we felt bad for him being so thirsty. A few minutes later, he started gagging, and another few minutes later he started spewing bright orange liquid across the room. I had one of the little vomit basins, but he threw up so hard it kind of bounced out of the thing and into the wall. Poor little guy. Took the drink away, got Sprite, and made him take tiny sips. He threw up a few more times, then settled and they let him go home. Halfway home, the retching sound was again heard, then the entire back seat was hosed down with Sprite vomit. I had thought ahead and put Jaymes speech device up front in case that were to happen.
He's doing good, totally recovered now. It was hard on him, poor boy. We did get answers though. Not answers I'm happy about.
He said that there does seem to be hearing loss. It was explained to me this way: It's like he's got his fingers shoved in his ears. He can hear some, but maybe not specifics and that's why he has so much trouble with communication, following directions, and talking himself. I really didn't think he had hearing problems. I'm kind of in shock about it. I know it's not the end of the world, but it's very upsetting to me regardless.
The doctor is going to do some more hearing tests in the office, and try to get a trial hearing aid and see if that helps. I'm a little freaked out by that too. More on this another day, I guess I'm just really not at a point where I've thought about it enough to make a real opinion.
The other news is that the one ear tube that had been recently replaced was still in place, but it was sitting in a huge, filthy, crusty hole in his ear drum. They pulled it. The other tube had fallen into the ear canal, so they pulled that one too, and "roughed up the hole" so it could still drain. He hasn't been without tubes since 2, I wonder how he'll do.
Thursday, July 23, 2009
It's been a pretty good morning, already! I woke up at 7, after a really strange night. My hip was killing me last night after scooping out the pasture (mostly because I'd put off scooping twice a day like I -should- be doing and let the manure monsters do their own version of the Blue Ridge Mountains in feces) so I took a Percocet and went to bed a little early. I guess the Percocet affected me differently that last time, because I had a really restful sleep in that I woke up totally refreshed and not too lightheaded, but the sleep was different. All night I recall waking up without really waking up. More like my drugged stupor lifted just enough to make me aware that it was raining outside and I left Jaymes therapy swing out in the rain, which does not make me happy. With my limited ability to function, I attempted to harass my husband out of bed to go get it, but I couldn't actually talk and so he remained asleep and I fell back to sleep. This repeated several times, and it was so weird, like being underneath a very thick layer of jello. Yeah, that makes a whole lot of sense. Whatever it was, it was not unpleasant at all.
This morning I'll have to head out and get the wet therapy swing out of the yard, and the wet fly sheet off Lucy. Why does it always rain the day after I bathe the horses and get Lucy's very complicated bunch of head-to-hoof fly gear on? I body clipped and did ears on the Moal, then gave her a bath for perspective buyers- hopefully i'll have her sold by this weekend. I need to get Lucy's teeth done, buy some more hay, and pay some bills. Bye bye, Moalie.
There is now a line of spoons on my other side, and it would seem Jaymes is surrounding me with silverware. Jaymes is in a wonderful mood, cuddly, a little wild, lots of babbling and a few real words. I was shocked to hear him say "Sierra sleeping in room" when he woke up- how awesome is that?
Oh, more good news! I had mentioned that OT annual evaluation Jaymes had last week and how impressed with him I was for how hard he tried... The OT (who doesn't take nearly enough credit for Jaymes progress!) went over his results with me and well... It's time to crack out the confetti and balloons because he did AWESOME. He scored most things at around a cognitive age of 3. It was measured in months, which always confuses the heck out of me. The scores were all 38-43 months. WAY better than last years testing, and even this year's school testing topped out at 2y, 3m. I am so incredibly impressed and proud of him. Jaymes is the man, but then you all knew that.
It can be kind of hard going over those test results. To the rest of the world, Jaymes scores are awful. Really, really bad. The word "poor" is all over the place. He scored poorly. I've found that if I focus purely on the wording, and not just at the age equivalents, I get very depressed, because somehow they manage to make even a wonderful score suck. But, we've done enough of these now that I can see past that part of things. Yes, a 3 year age level is terrible for an almost 6 year old. But for Jaymes, it's an all time high. It means extreme progress has been made, and it means he's doing a GREAT job. I was (and still am) just so thrilled with how hard he worked and how well he did.
And do you know, Jaymes can draw a circle every time? He is starting to draw squares and triangles and he can say the word triangle and identify one. He can string beads, and cut with scissors, and draw a cross. He can use his Vantage Lite to ask for a food or drink item. He finally knows his name and answers when you ask him. He knows the names of everyone in the house, and of lots of family friends and therapists too. He's controllable in the car, most of the time. He's not hurting others or himself nearly as much. In general, he's a happy, slightly wild boy who has his meltdowns, but in general has improved drastically. I'll do a comparision post soon, because he is a totally different child than he was last summer.
So, a quick summary of our morning. Jaymes is awesome. Forks lined up to my right. Spoons to my left. Giant pile of silverware in the middle of the table. Jaymes is dancing and pointing out that one fork is pink. Sierra still sleeping. Wet, muddy horse who needs her fly gear removed and washed, outside. Muddy Moal who will need another bath so she gets sold. Jaymes is awesome. Mommy woke up at 7am and survived!
Oh, and Jaymes is awesome.
Friday, July 17, 2009
I'd been nervous, thinking the band might be too loud for him. They were too loud for me, and there were a few times I wanted to cover my ears. They were really good though, just we were sitting so close. Jaymes sat for about 15 minutes, stock still and silent, gazing at the band and clapping occasionally. He really enjoyed the music. A couple times he covered his ears and squirmed, but he seemed to shake it off and would go right back into enjoying himself.
Did I ever mention Jaymes' picture is on the Triad First in Families brochure? I think that's kind of neat.
Here are Jaymes and Susan, rocking out together (hopefully she's ok with me posting her pic up here, and if not she is welcome to send me an angry email and I'll take it right off!):
Summer school is going well. This morning the firefighters came and showed the kids their trucks, and they (the kids, not the firemen) made banana pudding. Jaymes came home with some really lovely art projects, and unlike his "work" at regular school, I know he made this and I'm happy. It's kind of funny, the staff over at Cash told me how summer school is "pretty much daycare" and not to expect anything... And the school is in the GHETTO, seriously scariest area I've seen and the school is not pretty like Cash... And yet this school has done WONDERFULLY by Jaymes. He's on a bus with 4 kids, and his own bus aide. He has a shorter bus ride to a school in WINSTON than the bus that goes to Cash, 15 mins away. Crazy. His teacher notifies me about ANY problems or issues, and she pays attention. I'm THRILLED with summer school, and I think Cash could learn from the Ghetto School.
I'm very stressed out still about the upcoming kindergarten year. So much, in fact, that I'm afraid to even let Jaymes start. I'm not happy that he's going into a self contained "AU" class, or that he can't have any inclusion time, or that we don't know who his teacher will be. The only compromise the IEP team would make at that awful meeting was that if he got a particular teacher, then she likes to take her class to the cafeteria with the other kids, and recess too. That was enough of a compromise to keep me- well, not satisfied, but tolerant of the teams decision. The team seemed to have forgotten that I'm a part of it too. I'm still upset at myself for backing down, I feel like I signed an IEP that I do NOT agree with, just to avoid more confrontation and drama. Stupid. Anyway, the little bit of "compromise" I got totally counts on Jaymes getting this certain teacher. If he doesn't, it's going to be another nasty, icky, unpleasant meeting.
I'm a little bit more confident now, knowing I have the backing of the ECAC. Incredible organization, they are wonderful. They are a wealth of info about all things school, and they are always willing to go over IEP's and give advice and help. Really dedicated, helpful people and just an exceptional group.
I don't know how the first few weeks of school will go. As of now, I'm hoping to have another IEP meeting prior to school starting, to discuss bus arrangements and a couple other things. now that we've seen how well Jaymes does with a bus aide and on a special bus (not just the neighborhood kids bus), I'm going to fight for that. Jaymes shouldn't have to sit on a bus with dozens of kids ranging in age from his age to 4th or 5th grade. he shouldn't be confined to a harness (if they ever even put in the order for one) when it's been shown that he does just fine with an aide sitting next to him. The bus driver and aide have nothing but nice things to say about him, unlike the driver from the regular school year, who had a heck of a time with Jaymes because Cash failed to provide either harness or aide... Or even an explanation to the driver that jaymes has autism and doesn't understand a 5 min lecture on why he should stay seated.
I want Jaymes to do at least one "special" with his typical peers. I don't care which one, I'll let the school decide that. I just want him included. The reasons the IEP team gave me were BS, and had I not been so flustered, I'd have shot them down. unfortunately, I failed in that due to my own nervousness. I know a lot of autistic kiddos from therapy, and a couple come to mind who have behaviors that are MUCH more severe than anything Jaymes does- and those kids are being included in specials with regular peers. There is NO reason Jaymes can't try.
Hopefully we'll get it worked out, otherwise I guess I'll look into a change of schools.
In other news, have I mentioned I'm going back to school? I spent 6 hours at registration the other day, which was exhausting. Met some weird people, some people like me, some people who smelled like pot. It was fun, in a boring and exhausting sort of way. In the end, I got 14 credit hours lined up. Two classes are online (psychology and History of Western Civilzation or something along those lines) and two are actually go in, sit down classes. I'll be at school Monday and Wednesday. Mondays it will be the math class from 2:30-5:20pm and the same time on Wednesday. Then, on Wednesday after that, I have 30 mins to rush from the Winston campus to the Kernersville campus for the english class. I'm horribly nervous already, but kind of excited too. Wish me luck- in my school endeavors and Jaymes' too!
Wednesday, July 15, 2009
Yesterday Jaymes had his annual OT re-evaluation. The usual stuff- stacking blocks, copying shapes with the blocks, cutting, drawing skills, etc. Jaymes has done this quite a few times, and it's never been a great experience for anyone involved. In the past few years he has screamed, thrown blocks at the OT's head, bitten, spat, and totally ignored. He's managed to break wooden blocks (how? I don't know. He's gifted. I know you're jealous.) and make OT's burst into tears.
This year, however, was awesome. Jaymes sat, Jaymes concentrated, and Jaymes TRIED. He's never actually put in the effort and focus to make a worthwhile effort before. No, I'm not being negative here, I'm saying that this is the first time he has ever genuinely been motivated to do the things asked of him. Now, he still couldn't do a good bit of it, and I don't expect him to be able to. I don't care if my almost six year old tests at a 1-2-3 year age equivalent. We're used to that, it is what it is. I'm not fond of reading the evaluation reports, but 2 year age equivalent is certainly better than 6 month, right?!
Anyway, Jaymes really did sucg an amazing job. He cut out an almost perfect circle, he cut the square, he cut the line. He did not want to stack the blocks (mostly because he knew that blocks are for lining up, and only someone who just doesn't "get it" would want to stack them upwards) but eventually he did. I think he beat his previous score on the block stacking. Good for him. He un-buttoned the buttons, and I think might have done one back up but I cannot remember.
In general, he worked his cute little butt off, and I am so impressed. Both I and his OT agree that there has been TREMENDOUS progress in the last year. He's a different child entirely, skill-wise, and I am so incredibly proud.
On to my post for today. Yesterday at OT, we were in the same room as another little boy (maybe 7 years old? I'm a terrible judge of age) and his therapist. They were discussing his Aspergers and how that is a disability like other kids at therapy were in wheelchairs, or have trouble with a weak hand, or who scream like hellions like my child. She was trying to teach him what is and is not appropriate to say to other kids with disabilities, and I found it very interesting. Watching that kid in the waiting room was also really interesting. I really haven't been around a lot of Aspie kids, nor have I read a lot about it, simply because my interest lies in Jaymes autism, which is an entirely different animal altogether (autism, not Jaymes). The little boy was telling his dad that he was very shy and that's why when another kid said hello to him, he just looked away. Now, 5 minutes before he hadn't been too shy to ask a kid in a walker what was wrong with him, but that's aspergers I suppose. Like I said- no real experience with it, so I hope no one takes offense. Anyway, I found it all really interesting when laid out simply by a kid.
I can relate to being incredibly shy. In the almost 6 years since Jaymes was born, I've changed a LOT but I still find my social skills greatly lacking. Before he was concieved (oh geeze, I almost typed "convicted"!) I was so shy I couldn't go into a store alone. I couldn't make phone calls unless it was to someone I knew super well. I couldn't go to appointments alone, or cross the road with traffic stopped at a red light, because I didn't want them all to look at me. I couldn't start a conversation, and the thought of going into a new place made me literally sick with fear.
Being pregnant with Jaymes as a stupid 17 year old changed a lot, mostly because I was told to figure it out myself, and given zero help from anyone but close friends. I needed medical coverage, so I went to the Medicaid office and sucked it up and did my application. I needed WIC for formula, so I sucked it up. It was terrifying, and I don't really think the experience really did anything but stress me out, however I did begin to learn how to do things in the real world.
When Jaymes was about one, and we started to notice the signs that something was not right, I had to deal with asserting my opinion that it was more than being a "late bloomer" to the pediatrician. Then going to a zillion new specialist offices, and having to talk to a ton of new people. Still scared me out of my mind, but what can you do? It had to be done, so it was done. I got used to making phone calls, to requesting records, and essentially forced myself to function in situations that were incredibly stressful for me.
Now that Jaymes is almost 6, I can look back and realize how much he has done for me, and how much I've changed. I have no trouble with phone calls or making conversation in waiting rooms. I actually have some other mommy friends, one that we do something with at least once a week. I can go to an IEP meeting and swallow my fear and get to business. Jaymes has taught me to advocate for him and he's taught me that in our life there is no room for self doubt and irrational fear. Isn't it amazing how much our kids can change us?
I'm still just as nervous as I've always been, I still get sick to my stomach at the thought of going somewhere new. I almost didn't go to college registration because I was too afraid to be in there with so many people and not knowing what to do. I did it, and it wasn't that bad, but I'm obsessing over the fear of walking into class on the first day now. I know it's irrational, but it still stresses me out. I'm weird like that. When making plans, I prefer to plan everything out. I'll be here at a specific time, in a specific place. What color car will you be driving, what time will you be there? Do you want me to use the front door or the side door? I have to know every specific, because then I know I can't mess it up. A good example of that is therapy. Sometimes I have Sierra with me and can't go in with Jaymes to speech, so the therapist says to come in toward the end of the session to discuss with her. This freaks me out big time. What time? Should I knock on the door? Walk right in? You can't be vague like that with me. Another example: college starts in August. I have to go from a class at the winston campus to a class at the kernersville campus with 30 mins between to get there. First off, what if I go in too early and the previous class is there and I look stupid? What if I'm late and have to walk in to a full class? What if I don't know it's the right class? What if I sit in the wrong spot? What if I don't understand what to do? Then, what if I don't make it to the next class on time? What if I'm late? What if I get lost and can't find the classroom? These things really really mess with my head.
So I guess in some ways, I've grown, and in others stayed exactly like I always was. I was never the kid in school with a ton of friends, I never knew how to dress right and act right, and even now more often than not I say things that come off entirely differently than I meant them. Thankfully I have friends who get it, and know I'm not trying to act like a freak.
I've debated a few times trying to get evaluated for Aspergers, because all that sounds a lot like what the little kid in the therapy office was saying. But then I realize that at this point in my life, a diagnosis just gives a name to the issue, and maybe gives me an excuse to use. It won't change how I feel or how I cope, nor is there a magical pill I can take to be calm in social situations. I don't know that what I feel is anything abnormal anyway. my family has no issue telling me I'm nuts, having a breakdown, etc... But to be honest, I think I handle things quite well given what I've been handed over the years. I've tried the medication thing and not only is it only good if you have health insurance to help pay for it, but I found myself feeling sick or totally zonked out, and no real change in how I felt or thought on the inside.
I've found it easiest to just know my limitations, to plan around those limitations for the easiest possible ways to handle things, and to thank whatever diety is responsible for giving me Jaymes- because he's been the biggest influence in changing how I think, act, and function.
Friday, July 10, 2009
Anyway, copied and pasted from the Autism Society of NC's blog:
The Case for Raising Revenue
Without additional revenue, let’s review what is at stake: (The Autism Society of North Carolina supports this analysis from the Arc of NC.)
LME services cuts ($65 million ):
This includes a $50 million dollar cut to services without specifics, a $16 million cut to services to people with DD who also have a CAP slot and a $4 million cut to “non-core ” services.
The LME cuts for services will mean:
a.. Severe reduction of hours in day programs
b.. Loss of day program placements
c.. Loss of placements in group homes
d.. Severe cuts or elimination of supported employment and long-term follow along services
e.. Some group homes and day programs may close
Case management Cuts ($58 million):
Calculations by the Arc of NC show that to get this amount of savings, they would have to eliminate all of case management.
The case management cuts will mean:
a.. Case managers won’t be able to write comprehensive person-centered plans
b.. There will be no one to assist families with benefits coordination
c.. Service authorizations will be delayed
d.. Case management jobs will be eliminated
e.. Some agencies will close limiting provider choice and adding thousands to the unemployment rolls
3% rate cut to Medicaid services:
This cut combined with other cuts will cause providers to close and reduce already inadequate staff salaries
The provider rate reductions will mean:
a.. Direct support staff salaries will be reduced further adding to the shortage of qualified direct support personnel
b.. Thousands of jobs will be eliminated
c.. Some agencies will close adding thousands to the unemployment rolls
Continuation budget cuts will reduce hours for people who currently have CAP-MR/DD services and limit the ability to get additional hours if a crisis arises.
Cuts to Medicaid personal care services, the Community Support program , and statewide contracts to non profits like the ASNC will further erode the supports to people with autism and other developmental disabilities and their families.
Finally, in addition to the devastating loss of service, thousands (we believe potentially 40 - 50,000) of North Carolina citizens will lose their jobs adding to our deep economic and unemployment problems.
Sunday, July 5, 2009
I often take for granted Jaymes size. No matter how wild, hyper, even violent he might get, he's tiny. Situations are relatively easily handled, although I do admit it's hard to hold onto him screaming and flailing for long periods of time. There was, however, an occurance in the food court that made me think.
Half the occupants of the food court area turned at the sound of a 15ish year old boy shrieking and apparently engaging in a struggle with two women- one older, one in her 20's maybe? I'm really bad with ages, so I'm probably way off on everyone. Anyway, as they got closer, the boy managed to jerk away from who I assume was his mother and sister, and bolted for the arcade area. Most of the people sitting at the tables were laughing, or pointing, or looking outraged. The word "retard" was heard more than once.
It's funny how easily we autism families can identify it. To be fair, it was very obvious. The hand flapping, squealing, the excited wild running up and down the arcade. it was a much larger, african american version of Jaymes. The sister actually went by and we chatted with her for a few minutes while the mother darted around after the kid. They seemed like nice people. A few tables around us listened to our conversation, and when the family took off (literally, the son had wrestled free of his mother's grip and shot off at full speed past Sonic and the Japanese place and out of sight), one woman came over and said she was sorry for what her table had said. apparently she heard me ask if the boy was autistic, and heard when I told the sister that jaymes was as well. She listened to our little exchange about the merits of taking these kids out into public places and though she had no experience with autism, she "got it".
Some of the other tables continued laughing, mocking, making retard jokes... And what can you do? Those people choose to be ignorant and cruel. Any idiot could look at that child (er.. teen) and know that he wasn't being a jerk, wasn't messing around. Most of them did, given that they were referring to him as a "retard." I just don't understand that. I see kids like this, and I feel that family's exhaustion and stress. I can appreciate the courage that mother had to bring her son to the mall. Like I told her... Good for her. Everywhere we go with our kids, we spread awareness and we teach something. Our kids benefit, and the people (like the lady who I talked to afterward) who choose to can learn about it and understand even just a little.
I do not think Jaymes will ever be quite like this particular kiddo was. I hope he won't be. But either way, I hope I will always have the same courage that this mother had. Our kids deserve to come out of the house, out of the special ed classrooms, out of the therapy waiting rooms. They have a right to eat at the food court, play on the playgrounds, go to restaurants, and just be part of their community. Too many people feel shame and embarressment when they come out with their special needs kids. Society isn't particularly receptive to differences. But the more we step out, the more we demand that our kids be seen and be part of their community, the more tolerance we'll encounter.
Don't leave your kids at home just because people might look at you funny. Ignore it, it's worth it in the end.