Stunned

Kindergarten orientation is next Tuesday at Jimmy's school. I went to the grades 1-3 orientation to try to catch the woman I understood to be his teacher this year in the single autism 5-8 class in my school district. We have been aggregating data on Jimmy's toileting habits in hopes of being able to try another toilet training approach. I wanted the opportunity to speak to her about this in advance of next week, so I could figure out if we were going to switch to underwear immediately.

So I get there. The principal gives us the grand tour and tells me that they have split the transition class, that the younger woman that I was told would be his teacher this year isn't going to be, that it will be an older woman who I met briefly. I fully admit I bring my own bias to this - my experience with older teachers and therapists leads me to think that they are less likely to incorporate best practice in dealing with children with autism. I guess if I am really honest, I think they are less likely to embrace the things I am doing with him and less likely to be willing to incorporate input or partner with Jimmy's therapists from the Matthew's Center. This is my child. I feel like on some level (even though intellectually I know these things aren't set in stone), I was promised the best and given the worst. I have no idea where my proposal for autism education in Manassas Park went - it was supposed be with the superintendent, but I have heard nothing. I feel like all my work on this with the Special Education Advisory Committee was for nothing. Nothing.

I am crushed. I have no idea who I am sending my non-verbal child to on Wednesday. Yes, I will go to the orientation on Tuesday. Yes, I will meet her, this new teacher. Will she be more like Jimmy's first teacher, who made me feel like a partner in this? Or will she be a more difficult person to partner with? Will she believe in my child the way I do? Maybe I will be wrong. But right now, I am lost, in tears and dreading next week. Moreoever, I feel completely betrayed by a system I am busting my ass for. I am pissed.

Sick of Poopy Playdoh

So everyone keeps telling me that digging in your backside and playing with what you find isn't uncommon when you are potty training "normal children." So what is it when they are putting it on a surface and running cars through it?

Toys Toys Toys

I get to de-toy the boys' room later today. They managed to cover their floor in toys and books by dumping every last items out of the toybox and pulling all the books off the bookcase. I need to pare down the amount of stuff in their room so this isn't such a problem.

Jacob got not one but two behavior referrals yesterday. Between that and his injury the day before from jumping off a playset onto the hard floor, I am starting to worry about him. He is two agressive, too rambunctious.

Jacob's Day at the Fair

Getting behind

All is well here. I have been really busy with work and leaving every day with my brain fried. We are still doing sits with Jimmy, but we aren't getting as far as we would like. So we are transitioning to dry pants checks. We will check his pants every half an hour to see that they are dry and reward for that. After getting a baseline of his bathroom habits, we make the switch from pull-ups to undies during the day. I expect to do extra laundry, but since he doesn't like to be wet or messy, he should be more motivated to use the toilet. I want him to do this - him going to school in diapers just isn't going work for long.

Teen Choice Awards

We were surfing before the Shatner roast and came across the Teen Choice Awards right as they were honoring J-Mac. He sounded so amazing on stage, seemed so normal (for lack of a better word) They showed the clip of his shooting, his teammates came out - it was really a beautiful moment. I can only hope that Jimmy has such a bright future. I was in tears.

A Reason to Move

I found this on a list-serv. Maybe my next stop in life is New York...

Sat Aug 19, 2006 6:12 am (PST)

Yesterday New York Governor George Pataki signed a new law that will require health Insurance companies regulated by the State of New York to provide the same health care procedures to people with an autism spectrum diagnosis that would be provided to people with other diagnoses. The bill will help correct the long-standing practice by health insurers of denying necessary health care to people with autism.

The bill also defines autism spectrum disorders as "neurobiological disorders." This definition is important becuse some health insurance companies have claimed that autism is a mental health disorder and therefore not covered.

Health insurance companies have used a variety of excuses to deny health care to people with autism.

The bill came to fruition after a four-year battle. The bill was conceived by Marty Schwartzmann, and Andrew Baumann, who is President of New York Families for Autistic Children. Both are fathers of sons with autism and both are residents of Queens. Assemblymember Audrey Pheffer of Queens introduced the legislation in the Assembly and Senator Charles Fuschillo of Nassau County introduced the bill in the Senate.

A coaliton of every autism-related membership organization in the state came together to press the bill as the top legislative priority of the community. "This just goes to show what parents of kids with autism can achieve if we pull together as team," said John Gilmore, a boardmember of ACHAMP and an organizer of the coalition.

Similar legislation is being developed for Congress to stop discrimination by insurance companies regulated under federal law.

The group that supported the measure include:


ACHAMP, Advocates for Children’s Health Affected by Mercury Poisoning
AHA/AS/PDD
AutismConcepts.com
Autism Society of America, Albany
Autism Society of America, Brooklyn
Autism Society of America, Bronx
Autism Society of America, Central New York
Autism Society of America, Fulton/Montgomery
Autism Society of America, Hudson Valley
Autism Society of America, Nassau/Suffolk
Autism Society of America, Manhattan
Autism Society of America, Queens
Autism Society of America, Western New York
Autism Speaks
Central New York, Families for Effective Autism Treatment
Cure Autism Now
Disability News Radio
FAIR Autism Media
Generation Rescue
GRASP, Global and Regional Asperger’s Syndrome Partnership
National Autism Association, National
National Autism Association, Central New York
National Autism Association, Long Island
National Autism Association, New York Metro
New York Families for Autistic Children
SafeMinds, Sensible Action For Ending Mercury-Induced Neurological Disorders
Schafer Autism Report
The Autism Autoimmunity Project
Unlocking Autism
UNYFEAT, Upstate New York Families for Effective Autism Treatment

New Playdoh

So as we continue to potty train, Jimmy has become more aware of his bodily functions. His lastest fixation is on poop. If he does it in his own drawers, he likes to reach in pull it out, and play with it like Playdoh. In the middle of the night. He has had two midnight bathtimes this week. Dad does the bath and I go in and wipe it off the bookcases or the wall.

This will be a topic of parent training this week for sure!!!

A Public Affair

Because autism gets a little boring, I have booked special entertainment for this morning...

A post later about poopy playdoh.

Day Two

I don't make it a habit to post about my work and this new job will certainly be no different. I am getting over day one nerves and got more engaged with day two. I have orientation sessions for the next four days. I know I have made a challenging choice, but I think the rewards personally and professionally will be well worth it.

Back to Jimmy's world. National holiday today - no parent training. I should be heading to the gym to celebrate, but I am too tired. I will go sign up tomorrow. I was up and down those hallways all day. Matthew's Center is doing a training session for a few of the staff members at Childtime. It's a more formalized relationship than the daycare and MC had in the past, but I think it is a very good thing. Jimmy is doing really well and Jacob is starting to adjust in his own time. He is also giving hugs on request consistently now to people he knows well like the Grandmas, Mia, and myself. It is a fantastic feeling.

The Big Goodbye

Well, after four and a half years, I am leaving my job today. As of tomorrow, I will get more time off, more money, and I will have a shorter commute and my first professional position (understanding the distinctions within the library profession), but I am very sad to be leaving. I attended Mason for my undergrad, but never had the experience of being a full time student during the day. I think working on campus for the past few years has given a taste of that experience I would not have had otherwise.

I will miss seeing my friends every day. I am going to miss this campus. It's a fun place and this was an especially memorable year with the Final Four. I am going to miss my student assistants, some of the best kids I have had the pleasure of meeting. I should do so well as to have my boys turn out like John D. or Jeff C.!!!

But... I am not going to miss my commute. The time that I will be saving will be spent going to the gym. I am not going to miss dragging myself in here on icy mornings - I'll take that two hour delay. I am not going to miss being a paraprofessional - at least not right now! More money, more time, doing something I truly believe in. And it's not like I am never coming back - I will have to take some classes in the near future to keep my job. George Mason will always be home - just not as much as it is now.

I feel pretty fortunate today.





Goodbye Mason. Thanks for a great 4+ years!

Regular Posting to Resume Tomorrow

Took a few days off, but I promise a lengthy post tomorrow.

Let me leave you with one thought - The Killers will not be experiencing a sophomore slump with their new album. I just downloaded their new single, "When We Were Young." Brandon Flowers takes me to my happy place!!!!

Fun with Blogger

Blogger tricks... another chance to see my favorite photo of Jimmy as I attempt to put it in the "About Me" section.

The Countdown

I start my new job in a weeks time. I won't miss the commute, but I will miss the people I have worked with for the past five years...

Jimmy and Jacob are continuing to do well in their new daycare. Jimmy's doesn't cry much when I leave. Jacob still misses Nelly, his older infant room teacher. I still feel bad about doing this to him... I guess I always will. Okay, "always" is a bit dramatic. How about "for the foreseeable future"? The therapists are happier with the daycare management, the daycare management loves us. Why am I still bitter about this whole thing?

On one of the listserv's I subscribe to related to autism, I have come to find out that Fairfax County basically has a whole set of services for children with disabilities that Prince William County does not. They have their own respite program and provides funding for assistive technology, where PWC has some modest funding for respite for people waiting for state services. I guess it would have something to do with the relative wealth of Fairfax County, but it's not like PWC doesn't have money of its own. I guess it's an argument for my whole charity/non profit thoughts of Monday, but you know, I really would love to do something that's not autism related. Maybe decorate my house or knit, just something. I just feel like it is fate that I will never have a hobby!

Poverty continued: the math

I figured it out. When the school year starts, I will pay $313.70 a week for Jimmy's afterschool (at a premimum because he isn't potty trained) and Jacob's full time daycare. Once Jacob is three and toilet trained, his rate drops, so the combined rate for the two is $298.70. Once Jimmy learns to use the potty, he pays the standard afterschool rate and my weekly bill drops to $259.10. The difference overall is $54.60 a week. That doesn't include the $25 a week in diapers, folks.

Do not get me wrong. I am completely grateful that Childtime can accomodate us and they are doing a wonderful job with him. Jacob really misses Mia and Nelly, but Jimmy transitions so much better there. He walks right into the room and doesn't shed a tear. I still resent the fact that Kindercare left me feeling like I had to move, ultimately to a more slightly expensive daycare, and that the toileting issue makes such a difference in the rate.

Poverty, thy name is autism

They finally finished processing Jimmy's paperwork at Childtime. He's legal, so to speak. We will have to pay a higher part time rate as long as they have to accomodate the toileting issue when he goes back to school. It's about $20 more a week than Kindercare. Between Jacob and Jimmy's respective rate increased, this switch is costing us about $180 more a month right now than what we were paying. But I am not worry about them flaking on me at any moment and Jim is going to the toilet every hour. It's more than I had at Kindercare. But I feel pretty poor at the moment.

In related poor-ness, I called about the DD waivers list. Even though I had been told that he could be processed onto the list at 5 years, 4 months, they told me today that they can't begin the paper until age 6 and I have to get a psychological eval and IQ test. Somehow I don't think that will be free either. Yes, poverty, thy name is autism. Oh, and I was told that we might not get off the list until adulthood. And that is because we are classified urgent.

I am seriously toying with the idea of starting a charity/non-profit to meet some of the needs of parents of children with disabilities in Manassas Park and possibly extending it to Manassas. Approach businesses and benefactors, do some grant writing to get funds for parents for children with autism and other disabilities that aren't covered by medical insurance for needed things like respite, adaptive equipment and technology, and the like. Insurance companies don't help, politicians are full of hot air, and state agencies aren't funded adequately to meet our needs. What the hell are we paying taxes for again?

Surviving Week One

Week one of Childtime has come and gone. Jimmy is happier. Jacob is coming along. On Thursday, we were finally notified that legal signed off on Jimmy and we were permanently enrolled. It is a huge relief. I still have to sign a waiver that spells out that if he is a risk to others with appropriate notice. It's not a big thing - certainly better than the policy that was stated to me by Kindercare that it could be done with no notice. I couldn't function under those terms without worrying. This is an improvement, but I still believe that it shouldn't be such a big deal.

Jimmy's IEP meeting was on Thursday. It was the triannual meeting as opposed to the yearly meeting. The biggest change is I let them include the autism diagnosis, switching the educational label from Developmental Delay to Autism. I know plenty of parents are wary of making such a change, but I look at him and I can't deny that is what he is. We didn't get here from neurology or mercury, but if you look at his symptoms, it's correct. Could that diagnosis change when he gets older? Sure, anything is possible. If that ever happened, I would fight to have it removed. But it is completely appropriate now and the forseeable future. They put some additional services in his IEP as well, so it felt like a win.

Next week is my last full week in my job. I have a lot to clean out in my cubicle. I am still reading up for my new job, still excited, still nervous. Time seems to pass so quickly these days.

Stephen Colbert's Assessment of Wikipedia

As a librarian, this is a hoot!

CNN Article

CNN recently posted an article that is a decent overview of autism. It's worth a read - not like anyone reading this blog is completely unfamiliar.

Day three of the new daycare. Jimmy is very happy and Jacob clearly isn't. I just feel like I can't win. I am writing a letter to Kindercare today or tomorrow regarding their disability policy and likely addressing the issues with that specific teacher as well. I am relieved knowing Jimmy is in better hands, but I am very unhappy with the situation.

Childtime

As you can see from the photos, the birthday party was a big success. Everyone had a great time. Jimmy's birthdays are always more adults than kids, but he liked the Thomas cake. We actually got Jimmy a cookie cake to eat, since he won't eat real cake.

The bigger news this week has been the transition to Childtime from Kindercare. Jimmy's doing well for him. It has become very obvious from the reports from his therapist about his separation issues that the problem was the teacher. By all reports, she was frustrated with him - he was becoming increasingly upset when the therapists left and the teacher did nothing to comfort him. I am angry - from the pit of my stomach, in a way that I have never been angry before, I am angry at that teacher. I am also angry at myself for not recognizing why my child was so upset. This is the first time in life that I have honestly felt like I truly failed him. Yeah, it was their disability policy and the way the center was interpreting it, but ultimately it became a decision because Jimmy wasn't happy.

So, I moved him. And his brother. Away from a bunch of other Kindercare who we really loved - Mia most especially, but Nelly, Juana, and Carmen as well. Those women shed tears when we left - I have shed many the past several days as well. I feel like I have taken Jacob away from everyone he has known and love to make sure Jimmy is happy. It doesn't seem right and I feel lousy about it.

We've moved. My only complaint with the new center is I still don't know that Jimmy is officially accepted yet. We are still waiting to hear from their corporate office. I have been working on this for over a week. Why does it have to be so hard? Why does everything have to be so difficult because of the word "autism?"

Birhtday Photos continued...

The cake...



The birthday boy...



Another of the man of the hour...



Jake and Maddy coming down the slide...