Bounce for Autism

First off, let me apologize for the iPhone photos.  I need to get a camera to start carrying around on a regular basis that better captures kids in motion.  The event was great.  Jimmy's therapist came, along with his teacher.  They had a fantastic time and turnout was pretty good for a Tuesday night.  Let me tell you, climbing to the top of those inflatable slides is some fantastic cardio.  Jimmy had no problem sleeping last night!!!

Why can't every night be a Bounce for Autism?

In related news, I really hope to have Jimmy's birthday there this year.  Invite my friends with kids, invite Jimmy's class, invite some of our adult friends.  It would be a blast!!!

Time for Some Clarification, Friends...

Twice in as many days, I have had friends tell me that they don't want to share their problems with me because, as one said, they seem "small and petty" by comparison. At first, I was sort of irritated, but it made me think. Here's what I came up with...

The last few years have been fairly daunting for me. I turned to blogging about my experience, partially as sort of a group response to the constant questions I got post-diagnosis regarding Jimmy and partially to vent. Of course, venting focuses on the negative, the stress and the troubles. As much as I try to write about the good stuff, if writing is your release, it doesn't work that way. I'm human - I hold on my joy tightly and try to release my pain freely. It helps me survive.

To some degree, this blog is a litany of problems that are very real to people who know me well. Everything from just the day to day stress of parenting a special needs kid (and Lordy, don't get me started about the "normal" one) to the IEPs and the revolving cast of doctors and providers to the more mundane things (albeit heartbreaking) like the death of my cat - it is one thing after another. But not each thing is a problem - it is my life. I have learned to adapt to some degree, to enjoy what I have been given. If took each problem individually and categorized it as such, I wouldn't get out of bed each morning. Who would, with that burden?

And, really, not everything is a burden. As stressful as this is, I realized I chose this. I chose to have children. Would I have chosen to have a child with autism? Certainly not. But you don't get to choose that. Your choice ends when you get pregnant. Yes, you take care of yourself and the child you carry inside of you. But beyond that pregnancy, nothing is promised to you. God gives you a child and you hope and strive for the best. It doesn't always work out that way.

I don't think life would be any less stressful if I had two "normal" kids. The challenges would be different, but they would still exist. I don't know anyone who isn't challenged by their life - jobs, families, relationships, personal demons. It's all very complicated. Everyone has problems. Those problems are just as real and important to you as anything I have got going in my life. If you are my friend, those problems are real and important to me as well. It is the nature of friendship. I don't think anyone is the perfect friend - all relationships require time, energy, and maintenance, all things I struggle with - but I always will welcome the opportunity to try.

Does this make any sense?

In memory of...

My pet and companion of almost 19 years, Buster.  She had deteriorated over the weekend, wasn't eating or walking well.  I had scheduled a visit to the vet tonight.  When I got home from Jimmy's appointment, I couldn't find her initially.  After searching, I found her, eyes sunken in, unable to walk, and breathing heavily.  I got someone to watch him and rushed her to the office.  After a cursory exam, they put her down.  

I got Buster as a kitten when I was still at home with my folks.  She has seen me through a lot in my life.  She is the first pet that I have had from beginning to end - they were either adopted in adulthood or given away in one of our many moves as a kid.  I will miss her greatly.  

Buster

Affectionally known as Miss Kitty, Buster has been part of my family for 18 years.  Sadly, I think we are going to have to take her to the vet this week.  Keep good thoughts for her.  She has been an amazing companion for many years.  I am so sad that this day will likely come this week, but I am really grateful to have had such a wonderful animal in my life.  

A Big Week

We have a big week.  Jimmy goes back to his doctor tomorrow.  With the increase in his aggressive behaviors and mood swings, I am requesting that we try Risperdal.  It's been a long time coming, but I think we are at the point where we have to try this.  I initially dismissed Risperdal years ago with the rationale that he isn't "that" autistic.  He is.  

Jacob starts play therapy this week.  I had planned to begin this a while back because of his transition issues, overall stubbornness, and the realization that having a brother like Jimmy puts a special burden on him that I am at a loss to address.  The recent trauma only increased the need for some behavioral intervention.  He starts Wednesday, though I am only going to be able to schedule these sparsely until they give me an afterschool time slot.  

We all have IEP this week as well as the Bounce for Autism, which I am really looking forward to.  And I am trying to get back into the swing at the gym, so I am going to be hopping this week.

Bounce for Autism

The Manassas Pump It Up is holding a Bounce for Autism to raise funds for the Autism Society of America on April 8th from 5:30-7:30.  We are definitely going - the boys love the place - but I would love some of our friends to go.  Entry is donation based with a suggested donation of $10 per person.  Come out and make this a successful event.  

We are doing okay.  Jimmy is already sacked out, but has left me with a ton of laundry to do for the evening.  His toileting desperately needs to get back on track.  Jacob is doing pretty well at the moment - he is still a wild man, yelling excitedly at Power Rangers currently.

Me... I am still smiling... it looks completely forced and exhausted, but I am smiling.

The Art Show

Jimmy originals...  Jimmy's teacher was nice enough to show us around.    There were several pieces of his in the show this year.  He loved making the alligator the most.  My favorite is the neon.

He's lost it..

As of Tuesday. His therapist had him wiggle till it dropped. Tonight's the art show, so I will get some quick shots with my iPhone and update shortly...

Jimmy's first loose tooth...

He's asleep and I finally got to check in on it - I discovered it a few days ago. It should be gone within the week. I can't believe we have arrived here! I am just hoping it makes it home and he doesn't swallow it or something.

As for last week's problem - many of my readers are my closest friends and I apologize that I have shared the story with some of you. As I get things sorted out, I will give this a lengthy post (albeit somewhat vague) in the future. The post will also make clear my reason's for keeping it private at this time. Now that we are all physically well and have an important story to tell when we are ready. For now, please keep good thoughts for all of us.

Enough the mystery for one night. Time to get ready for the first day back from Spring Break. I guess that leaves roughly ten weeks left to the school year, give or take. But who's counting...

Still here...

There has been a lot going on this week, some things I can't readily discuss. We are all well though and life is returning to normal.

We are going to an Easter Egg Hunt this morning and then my mom is coming to watch the boys this afternoon. I have to go pick up the living room right now in advance of her arrival. It should be clean for five minutes.

I apologize for the lack of posts...

Spring Break isn't turning out to be the productive break I envisioned. I am not going to say much more than I hope to have things somewhat back on track soon.

Woo hoo!!!

It's spring break!!!!!!

Photos and news from this glorious week to follow. (Yes, it's supposed to rain a bunch, but I don't care!)

That is all...

Spring Break - For who?

We are coming up to Spring Break. I am happy to get out of the grind of work for a few days, but I have a done of work to do. I am leaving the boys in daycare so I can get their room clean and actually split them into their own bedrooms. Jimmy is going to get his own digs. I have to 86 my office first, so I get to do a ton of work. I would love to squeeze in lunch with friends, but everyone is either going out of town or too far away to have lunch with during the work week.

The one big thing we have squeezed in next week is the much put off meeting with the Community Services Board. It is completely asinine that they are dragging us to this to get a small respite check when the CSB meets with us every ninety days to determine his eligibility for FAPT (which pays for half his therapies.) His level of function is completely documented through these meetings, yet I must produce my child for yet another evaluation. How many differ ways must I prove he is autistic?

Unfortunately, the CSB respite is going to be it for a while. The person contracted to do Jimmy's psych eval (for the Medicaid paperwork for respite) went on bed rest immediately after our first meeting. It explains why she hasn't called to finish the eval. I guess I get to wait until she pops now. Obviously not her fault, but it is disappointing as this will add months to the process of getting this paperwork completed and Jimmy waitlisted for the waivers. The frustration in navigating this whole autism thing is unending.

I am going to bed. Remarkably, I don't dream about autism. In my dreams, Jimmy talks. His voice is little and small, but it is clear and present. More often than not, I dream about the world before autism, not the world without autism. Mercifully, it's my happy place where I look good in a swimsuit and lie about on the beach without burning.

Sweet dreams, y'all.

I know I am behind...

I am running around, trying to get dressed, but I felt like I had to stop for a few minutes to let everyone know I am alive.

Jimmy has been sick since Friday. I thought it was the flu. He seemed better Monday, so I sent him to school. His fever was back on Monday night, so I took Tuesday off and took him to the doctor. Another ear infection, back on antibiotics. He still has a cough, but he is getting back to being Jimmy. While I was there, I got a referral for a pediatric neurologist. And not at Children's either - INOVA has a growing pediatric speciality, so I am going to give them a whirl. I scheduled the appointment far enough out so I don't have to miss anymore work - two days after I get off contract for the year. I will spend the summer doing the neurological workup I have wanted to do for so long.

SEAC met last night to see how bad the budget will be for special education. Relatively speaking, the cuts won't be so bad. I guess that is because of the legal requirements regarding special ed. Still, the growing needs of this population can't be ignored or diminished in bad budget years. It sounds like the bigger problem for us is the 5% spending cuts on the state level. That will hit special education and my son harder. I hope Governor Kaine and our elected reps can find a way to avoid doing it, especially to struggling jurisdictions.

And for those keeping track, I am still losing weight - I used my skip weigh in pass last week, so I am hoping for good news on Saturday. But I have been spending an increasing amount of time at the gym!!! Fortunately, the boys don't mind going.

Autism and Vaccines

You know, I will go into a longer post over the weekend, but I have such a problem with the whole vaccine movement. It's not that they might not be right, but they make it extremely difficult if you have other ideas about your child's onset. Do you know that I feel I can't go to the local support group meetings. The group leader wrote a post about the vaccine case in Atlanta, exhulting in the acknowledgment of the role of vaccines and declaring a start to the autism wars. What, does that mean I am on the other side of the battle? Is she at war with the medical establishment and big pharma or just anyone that doesn't believe that vaccines cause antibiotics?

I believe that the overprescription of antibiotics contributed Jimmy's autism. From this point, I am walking alone. The big autism groups don't give a shit about me unless I believe in vaccine boogeyman.

Pink

I am getting T a whole lot of pink. A little girl for me to play with, courtesy of BFF. I will have to start getting out to the boonies a whole lot more!!!

A cute photo...

Wish it had been with a slightly better camera... that's how they slept last night.

My Umbrella obsession continues...

Covered by Carrie Underwood and Keith Urban....

Goodbye Neighbors

The neighbors who bought my BFF's house moved out over the weekend. Their house is listed as a short sale. I kind of figured the two in between us would go out, just because they bought high in the hey day of the ARM loans. I didn't figure that these particular neighbors would. It is going to make it that much harder to sell to move to the other side of town. The upside is that parking will dramatically improve around here. Okay, the spots are still numbered, so it really isn't much of an upside. I really liked them (the husband was a big MMA fan, so we had been social with him a bit), so I was sad to see them leave.

Jimmy had FAPT today. We cut back on the consult, but kept in home the same. He has mastered his sitting for 45 seconds goal, so we are going to expand on that and some of his language as well. Progress is incremental in our world. At least we are making it. And we have a med check on him this week, his first, so I feel like we are slowly moving in the right direction.

Bed now. More later.

Still here...

Things have been crazy on so many levels... I will post tonight, after FAPT.