Saturday, September 30, 2006

Next Week's Potty Training drill

This is the toileting protocol we are using next week and forever on... in theory. Our therapist is the potty training queen (she really is outstanding!) and I know he will get it eventually. But this is going to be rough. He will be in underwear, although he will have vinyl pants at school. My printer isn't working, but I have to get this run off. I guess I am stopping by the library tomorrow. I have to get everyone - school, daycare, and both of us here - on board with this. It has been discussed and everyone has signed off on it, but the reality of doing is different than the abstract "we are sending a protocol and dry clothes" statement.

  • Jimmy should be taken to the bathroom every sixty minutes. It is suggested that the adult responsible for Jimmy carry a timer to remind them when to take him next. He should sit on the toilet for five minutes after each 60 minute interval.
  • Use a timer with an audible bell and place it in view but out of reach of Jimmy during each sit. This will create a concrete beginning and ending to his sits and he will become more comfortable with the demands. Point to the timer and direct his attention to it while giving him praise for good sitting.
  • Provide Jimmy with a preferred book or toy to enjoy while sitting. Be aware that items falling in toilet is very upsetting for him and smaller items may want to be avoided.
  • If Jimmy is successful he may flush the toilet and receive a treat. Have the treat in your pocket or hand so that you may give it to him as soon as he begins to urinate or have a bowel movement. It is important that he associate the treat with the act of eliminating in the toilet. Tell him as you give him the treat why he is receiving it, and provide plenty of praise!
  • If Jimmy sits with no results he may not flush. Please block all attempts.
  • If Jimmy has an accident he should, if at all possible, play a role in cleaning up the accident. This can be done by giving him a paper towel and asking him to wipe up his accident. Even if it is a minimal amount, it is important that he become aware of what has occurred. After this, he must change himself. In a neutral tone, tell him that he has had an accident and cannot play until he is dry. Please have him stop whatever activity he is currently engaged in and do not allow him to continue until he has changed himself. Redirect him to locating clean clothes and changing them. Please provide the least physical assistance possible.
I guess I will have a lot to post about next week.

Thursday, September 28, 2006

Jimmy's first phone conversation

Jim is working late. We talked to him on the phone. Jacob wasn't feeling chatty, so I put the phone to Jimmy's ear. He listened for a few seconds, said his chirpy "Goodbye" and walked away.

Daycare continued

So it seems our daycare center is on the brink (like within two to three weeks) of having a manager. It's a manager from Kindercare. Fortunately, it is not the last one from our old center. but it still makes me a little edgy.

Regardless, starting Monday, we will be putting Jimmy in underwear. He will wear vinyl covers at school for sanitary reasons, but the rest of the time, it's straight underroos and trips to the toilet. Jimmy's therapists seems to think that he will catch on sooner rather than later. I really, really hope so. That's a lot of laundry.

Tuesday, September 26, 2006

Met a nice candidate tonight

So we had a busy meeting schedule today. After picking the boys up from daycare, we stopped by the Republican meet and greet thing in Manassas. I thought about staying for the speeches, but the elevator wasn't working. I also had promised to pop by and see the budget presentation at the town hall meeting. But I managed to meet the candidate who is running for the late Harry Parrish's delegate seat. His name is Jackson Miller - he and his wife were lovely people. I think it is great that I have met two nice people, Jackson and his Democratic challenger Jeanette Rishell, running for this seat. I think either would do a great job. Of course, reality is this is a Republican district... I introduced them both to Jimmy and Jacob. Jimmy wasn't interested. Jacob thought he should take off his shirt for Mrs. Miller. Gotta love my kids. I hope to have the opportunity to speak to him in the future about autism and the challenges families face. Politics aside, they are really nice people. I think when you enter public office, you are giving a lot of yourself. I appreciate anyone who does that, regardless of party.

Then we dropped by the townhall meeting in Manassas Park. Jacob continued the naked theme of the evening of dropping trou in the doorway of the Governing Board chambers in the middle of presentations. Yes, this is my normal child. I am going to join him in our room to watch the Jungle Book 2. Dad's downstairs watching Finding Nemo with Jimmy. Yes, it's late. We are competing to see who can get a child to sleep first.

Oh, and more on the daycare debacle tomorrow... It's going okay, but, my, is this whole situation stressful.

Sunday, September 24, 2006

Toys R Us Differently Abled Guide

I guess we will be using this to put together the Christmas list - though he is getting more books than toys, because that's what he prefers. It's a nice little resource.

Jimmy's so smart

We were sitting on the couch and we drew a big hand on his Magna Doodle and counted the fingers off, one through five. Jimmy took the little pen and wrote - in the scribble that is his emerging handwriting - 1, 2, 3, 4, and 5 on each finger. He is smart and tries so hard. At back to school night, his teacher gave us a list of all the different criteria of autism. It is so hard for me to believe that he is likely to test with an IQ below 70. It's not that his IQ will actually be that low, but without suitable language to express his thoughts and ideas, we don't know what he knows, what he understands.

Saturday, September 23, 2006

Broke the news... Jimmy's therapist about the management change. She had worked out a potty training protocol with the school and the previous management team. I am so nervous about getting another Kindercare situation, I can't tell you. I am honestly thinking I should just hire an afterschool sitter for Jimmy and be done with it, but relying on a non-center situation is fraught with its own worries. I have my feelers out for other possibilities for Jimmy. It's just so frustrating.

If anyone knows of competent daycare in Manassas for a mildly autistic child, where he can be with "normal" kids, please let me know. It really might come down to Robert Day, but I get a sick feeling in the pit of my stomach everytime I think about it.

Friday, September 22, 2006

Another childcare issue...

Both the center director and the director in training abruptly quit Childtime today. Resigned with no notice. Said there was a conflict with upper management. The staff will remain the same - Jacob has finally attached himself to a teacher there, so I am relieved and hoping not to have to make a change. On the other hand, I am terrified about getting another center director that is unwilling to accomodate Jimmy. In about two years, I went through seven center directors at Kindercare - it wasn't until number 7 that I got to someone who wasn't willing to help with Jimmy. My gut is just really shaky about this change.

I hate this, I really do.

Wednesday, September 20, 2006

Way to start off the year...

I had my first SEAC meeting tonight.... I think I may of upset one of the higher ups so completely that I could get thrown off. My husband would be thrilled. I had four meetings in the hours between 3:30 to 8:15pm tonight - two work, Back to School night, and SEAC. Maybe I wouldn't mind getting thrown off. Not like that would silence me - I would be freer to fight someways. Who knows.

Sunday, September 17, 2006

Leeza Gibbons show

Referring back to an earlier post, my husband has YouTubed my appearance on the Leeza show. Joy!

Another Weekend

I don't know why, but they go by so quickly. We took the boys to see their grandparents today. Jimmy's been pretty chatty all weekend - he has also been drawing a lot. He took a few markers to the couch. Another argument for not getting a new one anytime soon.

Thursday, September 14, 2006

TOPS Soccer Program

I haven't had the opportunity to take Jimmy to soccer yet this season (we were gone last weekend and both too tired from school this week), but apparently it is suspended until someone volunteers to coach. Ours has moved away. I am sort of bummed - even though the minimal time committment was difficult for us to swing, it was fun.


To a parent teacher conference for JACOB... at the daycare. Joy!!!

Tuesday, September 12, 2006

I am putting you on notice....

My friend Stephen Colbert is updating his lovely board...

President Bush
Senator "Macaca" Allen
Senator John Warner
Congressman Wolf (you might get off notice for your support of the Combat Autism Act of 2006)
Governor Tim Kaine
State Senator Chuck Colgan
the winner of the 50th District race for General Assembly - either Jackson Miller or Jeanette Rishell
City of Manassas Park Governing Board
Manassas Park City School Board

You are all going on notice. I am tired of the buck getting passed regarding providing for children with autism. The buck gets passed down to local level, which screams poverty. I am starting at the bottom and working my way up, because something has to change and I don't believe for a second that change happens from the top down.

Monday, September 11, 2006

I Jacob...

I 2. I future felon...

Jacob is being quite the disobedient handful. I was worried about Jimmy getting bounced from Kindercare. I am now worried about Jacob getting bounced from Childtime. He keeps launching himself off the furniture there and getting hurt. There was a week where I could have papered the walls with the behavior referrals. I am at my wit's end with him.

Sunday, September 10, 2006

Sesame Place

We went again and, of course, I left the camera at home. Had to use the cell phone instead. We spent a lot of time in the wave pool. Jacob rode the roller coaster twice and also went down a few water slides with me. Jimmy really didn't want to ride anything, so we stuck mostly to the water. He had a blast and even watched the parade this year!!!

Thursday, September 07, 2006

The source of my anger...

As I was in Starbucks with Jacob today (who has a stomach bug, so we had to do the swap at school so Jim could get to work,) I ran into Jimmy's teacher from last year. She is a nice woman and I don't think I have given her enough credit for her work. I just felt a bit at odds with her. I don't think any educator can understand how painful autism is for a family. My husband ran into a family as we were leaving kindergarten orientation. The child had been in class with Jimmy over a year ago. He is starting kindergarten as a seemingly normal little boy. That was our hope when this all began, that it was just a function of catching up. It hasn't been. And it never will be. Jimmy will never be normal. He will always be different.

You get pregnant, you have every test, they tell you your baby is fine. You dream of all the things to come. And your baby isn't okay. They tell you they don't know what causes it, what can fix it, or what he will be like future. My son can't talk to me in any sort of meaningful way, other than to express what he wants sometimes. He has only told me he loves me once and it was because it was I just said it to him. He scripted it back to me. I don't know what he knows, what he understands, what he thinks of the world. He is five years old and still in pullups. There is little help for my son - medical insurers don't cover anything related to his condition, there is a waiting list years long for respite. The people that are there to help, the schools, are required to provide a "free and appropriate education," nothing less, but never anything more. I am not going to bash what I have gotten, because people have made some really efforts on Jimmy's behalf, but I fight for everything. It is exhausting.

These teachers, Jimmy's teacher last year and the year and a half before, have given so much. In my frustration over not getting everything I want or agreeing with them all the time, I don't give them enough credit. These are dedicated professionals. To say it is their job is minimizing their efforts. But this is my child. This is my life. I had dreams for my son - an education, achievement, a life, a marriage, children for him, grandchildren for me. To some degree, I think if I am honest and realistic, some of those dreams may be dead. I have hope that they are not, but I don't know how realistic it is. I don't think there is a teacher or clinician in the whole who can understand what an emotional pain that is to me and to my husband and our families. Not only is it our pain, but it is one that will be shouldered by Jacob. He is too young to completely understand his brother is different, but it won't be much longer before he realizes it. And ultimately he will be the one to shoulder this burden, one that he never asked for, after we are gone. That hurts too.

If my anger is misdirected sometime, I apologize. I just don't know where to put it.

Wednesday, September 06, 2006

Jimmy's First Day of "Real" School

Well, it's not like he can tell me how it went (writing that makes my heart a bit - what parent doesn't want to talk to their kid about the first day of kindergarten), but Jimmy seemed to have a good first day. His teacher said in his notebook that he ate cheese pizza for lunch and drew a face ("impressive" was how she described it) on the whiteboard in class.) He feel asleep on the bus room and slept until I picked him up from Childtime. We skipped soccer practice. Neither of us really had enough steam.

Tomorrow, Jacob will be wearing underwear at Childtime. One way or another, someone is getting out of diapers. Jacob first, I guess.

Tuesday, September 05, 2006

One more shout out...

What up, Mrs. Tickle?!!!

Inspite of my ranting and ravings and philosophical differences, I appreciate everything that people do for my son, my family, and I. His teachers, his therapists, his doctors, elected officials I harrass on a regular basis. I hope none of you ever have to walk in my shoes, but I hope each and every one of you gets to love someone the way I love Jimmy.

Kindergarten Orientation

I am exhausted from a long day of work and Mommydom, but suffices to say that the outlook is much brighter than I had hope. Dr. Miller, who I clearly don't give enough credit to, has given me a teacher who makes me feel comfortable, welcome and a partner in my son's education. There are three other kids in the room, an aide Jimmy knows well, and a male kindergarten with a special education background for mainstreaming. I am very relieved and optimistic about the coming year.

There's more, but it will wait until tomorrow. For now, I hear my pillows calling...

One more thing... I have completely fallen out touch with all my friends while everything has been going on. So to my daily crew which is lucky to hear from my once a week...

Julie - I am so proud of you with your new job and fiance.
Miriam - Hang in there with school and you too shall be gainfully employed. Tell Dot, Georgie, and the rest of reference that I miss them.
Amy - Pop already
Deshaun - Dinner. Soon.
Melanie - Ditto. And get me to go back to church with ya and don't take no for an answer.
Tori - ARGH! Primal scream done. Let's get drink. I miss e-mailing and calling.

I love you all.

Friday, September 01, 2006

Follow up from last night

So I talked to the head of Special Education. I sent him essentially what I posted yesterday, with some stuff added. He asked me to call. For the record, these people generally are very nice and compassionate. I reiterated my concerns and he attempted to reassure me. My proposal regarding the partnership has essentially been back burnered because they were told to cut $800K from the school budget because the assessments in Manassas Park were not as much as expected. The new teacher has a ringing endorsement from last year's teacher, an endorsement that obviously means nothing to me. He said if I was unhappy after a few weeks, we could talk. He didn't elaborate, but I think that means if I am unhappy, we can look at moving him to the next closest appropriate program outside of Manassas Park. Which might actually be Manassas, where I am working. Even though it wouldn't be my school, I don't want him in the same system where I am working. I am very different as a professional and librarian than I am as a mother. I don't want one spilling into another.

I feel a little better. Now I have to show up on Tuesday night to meet this new teacher. And I now have to start in on the local school board and the Governing Board trying to get this moved forward, money or not.