Vacation winding down...

Jimmy has been wandering around the house repeating "School Monday" and "Audrey," the name of a classmate.  He knows what is coming.  I am hoping for no more snow day interruptions - he finds those more disruptive than planned breaks.  Here's hoping he doesn't dart from the bus.

It has been a fun filled break, with trips out and about, visits with his favorite aide Erica, and a mall outing or two.  We took him without the stroller - it was brief and there were two parents attending.  Of course, he idea of fun is going to the Apple Store (which was relatively uncrowded) and playing with the same iPad he has at home.

He got a couple of stares when he squealed (one college aged guy just stared, walked away, turned around, and stared some more - seriously annoying) and his Project Lifesafer device gave the sales girls at Forever 21 (his favorite store since the tile sparkles) because it set off the alarm coming and going.  It was a brief trip, a little stressful keeping him contained, but otherwise successful - the ultimate measure of that in how much fun he had out.

A pox upon your house...

So of the many childhood scourges, the dreaded lice made an appearance over Thanksgiving weekend. Yes, my children bathe.  Jimmy had such a mop of hair, I guess it was bound to happen.  We used Nix and washed, vacuumed, and cleaned.  Then we used clippers and sheared him.  Much like you do a sheep, actually.  He got sent home from school today, saying there were still a few there, so we did olive oil and combed as well.  It seems to be much better, but wow, is it bruising to do anything to that child's head by yourself.  Seriously, I am bruised on my arms.  He is getting nothing but stronger every single day.  His brother has been treated twice as well - much better after the olive oil thing, I must say. The nurse actually said this little buggers are getting resistant to the chemicals in things like Nix.  Superbugs from antibiotics, superbugs from pesticides.  If you stop to think, it is scary.

I am not bringing those combs back around without some help...

Attention Jennifer Aniston

... on behalf of my autistic son, whom the word has been directed at more than once by unkind soulless shells walking this Earth, I would like to invite you to remove the term "retard" from your vocabulary.  Perhaps, as a suitable mea culpa, you could make donations to ARC, Autism Speaks, and other groups representing those with intellectual and developmental disabilities whom you offended with the use of that term.  K thx.  

An Actual Comment I Got About Autistic Kids

I have had too much time on my hands with the snow days so I commented on an article in a newspaper. I didn't realize there was a direct message function, so this was forwarded to my e-mail. The comment that he made in his post suggested giving autistic kids guns and ammo if they couldn't be institutionalized. The editor has since removed the comment.

"I just want to say I don't mean to hurt anyone's feelings over this issue. I just say what is on my mind and sometimes the truth is hurtful to some. I applaud the devotion and dedication it must take to raise an autistic child, but it's just my opinion that they should be institutionalized and the school tax burden that they cause to skyrocket would deminish. It is no doubt the most difficult thing to ever do, to part with such a child. Tell me why people take them to restaurants to disturb somebody elses peaceful meal?"

I need to get back to work. No more holidays, no more snow days. I have too much time on the Internet with too many people who have entirely too many people who have too much time and opinions. Starting now... going to clean the guest room.

Have Yourself a Little Taps Christmas

Santa hit it out of the park this year. Meet Disney's Little Taps. Sadly available only in Asia, we had to buy ours on Ebay from a seller in Hong Kong. Grandma got the fifth from someone in Oregon, but it was Asian in origin too. It's sort of the perfect autistic toy - ordered, repetitive, soothing. Jimmy's been watching these Little Taps videos on You Tube since the end of the summer and he loves them. He didn't put these things down for nine hours today. He's just delighted.

I am putting together an e-mail to the powers that be at Disney to see if there is any chance these things will be released here in the States. The mark up in the secondary market might kill me long term. But seeing Jimmy so happy, so engaged with Christmas... it was so worth it.

Two Feet of Snow...

I guess timing is everything. I had surgery on Friday afternoon that ran long and was discharged from the hospital very late in the evening... into a snowstorm. I thought they said it wouldn't begin until after midnight. They have already called school for Monday morning, at least for me. Jimmy is completely screwed up sleepwise - just a bundle of energy from being inside all day with no running around. Jacob is crashed out after having "helped" his dad shovel snow. It was a fruitless task as it came down so quickly. I have been up and down between getting sedatives out of my systems while putting painkillers into my systems. Odd timing for a blizzard, but for me some good enforced down time to recover and to hang out with my kids.

Another one bites the dust...

Jimmy lost the second top front tooth today. And by lost, I mean lost. I got a phone call from Extended Care saying he was crying and fussing at his mouth, but wouldn't let anyone look. She asked if he had a loose one and I said yes. That must have been right about the time he lost it. No tooth recovered. Last time he tossed it into the lawn. So if he didn't swallow it, Mr. Bailey might just find it on the gym floor tomorrow.

All Jimmy wants for Christmas is his...

Spitting?

Jimmy's newest behavior... spitting. Solely at school. I have seen him drool and be fascinated by it, but the boy is seriously, defiantly spitting at school. I don't know how this started, but I am hoping it is a temporary behavior. It's not a pleasant or desirable one, especially in this age of concern about bodily fluid. If you think people flip out when you cough or sneeze now...

Our ENT visit...

No infection, but a blocked tube. It's a relief, although the drops treatment course is a little longer in duration and not exactly any more enjoyable than the antibiotics. Jimmy is really cranky today and not transitioning well. A late arrival and early departure from school will do that (we had an afternoon appointment too.) He is starting to calm down, though he is still scripting his classmates and teachers name, in between going over electronic flash cards of animals, another delight he found on YouTube.

Off to the ENT...

Going to get Jimmy's tubes checked tomorrow. I think he actually has an ear infection, but I opted for this rather than the GP. We are overdue for a tubes check and there are fewer truly germy sick people at ENT than a family practice. It's not one moment too soon as he is feeling really puny.

I do need to get his rash on his backside looked at. I think it might be yeast related. Again, I am not sure the benefit of going right now outweighs the risk with the nasty flu season I am seeing around me. Other than some diaper rash treatment (what's going on is very similar), if anyone has some over-the-counter remedy recommendations, let me know.

An owed post... Cox Farm

Cox Farm's Fall Festival was a good time. We took Jimmy's respite provider with us and it was just such a great day. She was really able to accommodate Jimmy's desires and aversions. We did some things together well, like the slides, and others poorly (like the second trip on the hayride), but everyone was able to enjoy themselves. I don't take the help for granted. It was huge to have her assistance. We avoided going a year ago because it was getting unmanageable with Jimmy. We have been given something great in the help we are receiving. We are very fortunate.

I'd have more to say, but I think I am coming down with the nasty bug that is going around work. I want sleep. Badly.

How many people does it take to extract three vials of blood from Jimmy?

Seven people and forty five minutes. In the interests of decorum, I am waiting until it's noon to have a drink. It was awful.

No, I am not dead...

I have had a big week, figuring out my place in the new world order. Adapting to the help in the home. My house gets progressively clean (in small increments, but it is happening) with each day. It's sort of amazing. But because of the hours that she is working, she is here closer to bedtime. It has allowed for a more focused situation, where she gets him to bed in his own bed. He has never slept in his room before. We have had an air mattress in the floor, which is where he was moved to each night after he fell asleep in our bed (only to come back at 3 or 4 am.) He is starting and ending in his own bed, in his own room. I want it to be habit. It's how it should be. Our attendant has been critical in getting it started, because bedtime for him is bedtime for Jacob as well. Jacob is horrible at bedtime. I had thrown my hands up about getting people to sleep when and where they needed to. But I sort of feel like I am abdicating Jimmy in this way as a mom. But I can't do both. As you can see, I am conflicted. Ultimately, its getting done and that's a good thing. We've got Nanny 911 going on at our house with a quiet 18 year old leading the charge. But it's working. And a favorite former sitter is moving back to town, she we will likely bring her in the fold as well.

Jimmy has an appointment coming up at Kruge Rehabilitation Children's Center in Charlottesville for an independent educational and medical evaluation. We will get professional recommendations for both and be back under the care of a developmental pediatrician rather than a neurologist. It's a more nuanced approached and I am grateful for it. I am hoping to get recommendations and input about what is truly best and most appropriate for Jimmy at this stage of his life. As always, there is a wait for the appointment, but it isn't too long. I have people wanting to strip services he needs badly, I have people who want to add services, and no one looking at Jimmy in a holistic way. I would think that the powers that be could do as part of this educational process, but they are not. Instead, I get to arrange and pay for it. The joys of autism.

He is having a good year starting at school. The new teacher is doing a great job with feedback on what kind of day he is having, what he is doing. The class is well staffed in quality and quantity of people at this point. I am pleased with the classroom part of it. Jacob is having a great time in Kindergarten as well. I got a note saying that he will have show and tell every Wednesday. I just think it's the cutest thing. I wonder if it would be inappropriate to ask that it be videoed and e-mailed to me. He is so expressive, I would love to see him describing his favorite things. Nothing but good notes on behavior at school. Not as good at Extended Care, but he will get there. Just as soon as he stops putting his friends in headlocks.

Okay, you can tell it is my first week back to work...

Because of the lack of posting. My Quest Diagnostics rant notwithstanding, I haven't posted anything since my return to work. And I generally make it a policy of not posting about work - nothing gets you canned faster. At this point, I am in the child care circus as we move towards Labor Day. Jimmy's situation is fairly constant - Extended Care - but Jacob has been more piecemeal. A friend is taking Jacob to camp in the morning this week and his regular sitter is picking him up and entertaining him in the afternoon. Next week, another friend who has recently decided to stay at home is watching him before and after camp. She has a new baby, a fact that will probably crank Jacob's desire for a little sister to a whole new level. No, that's not happening, but it doesn't stop him. He will be in wonderful hands, which is what is most important to me.

That last week before school will be mishmash of the boys' cousin, maybe my mom, and another sitter to get us through the week. The fact that they close down the week after school ends and the week before school begins is really the only negative to the program. Jimmy knows school is coming up... he has been scripting the names of his classmates and even seems to be verbally processing that Miss H has moved on and her bestie Miss K is the new teacher. He just wants to go back to what, for him, is his regular life and routine. Summer is an enormous disruption to him on every level. I think the only thing he enjoys about summer is Signal Hill's pool being open.

I have to go and make sure that everyone has clothes, swimsuits and dry towels for tomorrow. My work here never ends.

Scenes from my life

I went to Teacher Appreciation Day at Staples yesterday. Took the kids in to say hi to my colleagues after they ate breakfast in the minivan with DH. It was all going well until check out, when Jimmy has a full blown, on the floor tantrum with upkicks and wailing. Why you ask? He wanted another one of these.



Nah, nothing is ever easy.

Jimmy's 8...

Yesterday was Jimmy's 8th birthday. We didn't make a big deal about as to not confuse him at his birthday party next weekend. My in-laws took Jacob for the weekend, so we had some one-on-one time Jimmy. I didn't understand that not only did have to run Jacob out to Waldorf but back too, so that ate a lot of time, but we made the best of it. I took Jimmy to Toys R Us this morning to use his birthday money from my inlaws. Usually he asks for very little when we were out shopping, but we did the aisle to aisle thing and he left with another MagnaDoodle (those things are gold to him), a monster set of Lincoln Logs, a Star Wars playset, yet another set of Yo Gabba Gabba, a Spiderman ball, and a box of rabbit shaped organic macaroni and cheese. Yeah, I can't explain that one either. We will probably get him something small for his birthday, as the other grandma still has to gift him. My mom is very practical, so it likely a modest toy and some cool new shoes. Jimmy likes the gift thing, so it should be a good time regardless.

With all the car time, it really illustrated the need for me to do something about his seatbelt behavior. He got out of his belt in the back and decided to lean across me to adjust my radio just as everyone was hitting the breaks for Wilson Bridge construction. After the ride back, I went to the laptop and order more Angel Guards. We went about a year without them, but they are very needed. Having him as a passenger has become a terrifying proposition. It is getting to the point where it isn't safe to have him ride in the back without an adult. Hopefully they will come this week, so I can relax a little bit.

A big week... Depeche Mode on Tuesday with T. She is moving back to me to the ever-lovely Gainesville. I am in my happy place. I think our husbands are in mourning. It will be nice to have the bestie around.

Autism Hurts... especially when Jimmy has been jumping on your foot!

Jimmy has broken DH's foot. More specifically, several smaller bones a few weeks ago. He was in full tantrum and jump a little too often and hard. The foot has been painful for a few weeks, but he finally made it in to the doctor today (for unrelated swelling in the other foot - go figure!) So he is in a boot for four to six weeks and I am more responsible for the physical management of the kids for the time being. It means DH isn't likely to accompany us to the pool or anywhere else for a while and I am on my own.

Thank God there is only 14 more days school. My ability to multitask effectively is waning.

What I am doing right now...

Having cleaned the house earlier, I am currently on the main level (DH brought work home.)  Jimmy is monopolizing my laptop and Jacob is watching a Spongebob Squarepants DVD.  All is as it should be.  I think my life can be measured in the quiet pauses between the chaos.  There is a little dull noise of a yellow seasponge, but we exist in companionable silence, together but engaged in our things at the moment.  It is rather cool.  Don't know how long it will last...

Come Undone

Jimmy is backsliding a bit.  I think it is the departure of his longtime classmate.  She left a week and a half ago now.  In that time, there has been a notable uptick in accidents and some really uncharacteristic screaming fits.  I am going to follow up with school, but it sort of has me panicked, with the upcoming change in teacher into summer school and again into fall.  His one on one is going to be a classroom aide, according to the head of SPED, so that will be another adjustment as well.  I feel like we have hit the autism bonus round lately, with the screaming, the fights with his brother over control type issues, and the peeing (everywhere but the toilet.)  It's not that it hasn't happened before, it is just worrisome since we are the beginning of a whole bunch of changes for him.  What are we in for?

These are a few of my favorite things...

At least, they are Jimmy's.  

Jimmy's obsession with brown food is sort of an ongoing thing, so I thought while I wait for him to drift off, I would share a few of his favorite things.

Chicken Nuggets - I was talking with his therapist and she said she has never encountered an autistic kid who wasn't obsessed with chicken nuggets.  I would concur.  Here prefers McDonalds above all else, though I am getting "I want Burger King" because he knows the Star Trek toys are there*.  (He is sleeping the Zachary Quinto/Spock action figure, but I digress...) Going out to a place that doesn't offer chicken nuggets or strips is pointless, unless it's...

Pizza - Domino's sort of rules this one, as he is a little persnickety in the crust department.  He likes Pizza Hut and I wish I could sell him on it as a standard, as I love their thin and crispy.  Domino's has cheesy bread, which is more gold and less brown, yet still an obsession.  Pizza Hut needs to get something comparable to the glory that is Cheesy Bread.

Chips Ahoy/Oreos - Thank heaven's for Nabisco - you can get them big or small, but the boy loves them.  The only thing that sucks is you can't get them at Costco in the single serving minivan bags, where I usually get Famous Amos (but they were out last time...)

Fritos - This child loves Fritos.  Not any other corn chips, Fritos.  To be honest, he is the same way about Cheetos.  You can't run an Utz past him... this boy knows the difference and accepts no substitutes (if Frito Lay needs an autistic product poster boy, I have got your boy.)

Chocolate Milk - yep, it's brown too.  And Miss Harris gets it down him every single day, God love her.

I wish I could say that there was a fruit or vegetable on this list.  There isn't.  I can get the occasional juice down him or a Dole's fruit cup with his beloved Cheerios.  That's it.  With the advent of gummy vitamins (Scooby Doo's are the chosen ones with both boys), I can at least get that down them.  

* As cool as the Star Trek toys are, I am pissed as hell at Burger King for ditching Cinnaminis.  I loved them and was extremely bitter when I found out Saturday that they were off the menu.