To do list Should do and will do!

Should:
1. write thank you note to Principal at Harry's school for an awesome team meeting, was it last just last week? Really should fill out SEPTA appreciation nomination form for her but then I would need to do it for his social worker to who is also wonderful. Oh and then Psychologogist, teacher etc.
2. Called to advocacy for this:
I would respectfully request a write up on the following for tom. regarding why each should stay and their importance to children and families w/ children w/ disabilities, and then I will leave you all alone for a few days... Thank you.1. The Office of the Child Advocate2. The CT Family Support Council
3. relates to this: The Governor has made or asked for sweeping cuts and MANY affect our community. This has just happened within the last day or so, and many who advocate for those with disabilities have been scrambling to figure out what to focus in on and how. For now, we would ask you to focus on some of the hardest hit agencies to try to keep them operating....Office of the Child Advocate as well as The CT Family Support Council and the Office of Protection and Advocacy. The hearings are on the 10th and 11th respectively and if you would like to write to our government officials with your opinions on the cuts to these agencies, the pertinent addresses are listed below.
4. *Find out how far a possible sitter lives away from me from Patti's e-mail mentioned.
Many of these New England town sound alike their are many ______fields, _____fords, New _______ ect! I still need to look at a map!
5. Sign up for at least one of two scout activities for Harry in March or at least check the calendar and details out. Problem is I have to go with. Not sure about overnighter to a sports hall of fame.
Does that mean sleeping bags on gym type floors? or ski trip. Did I mention I have never done that before?
6. Put away christmas tree
7. Straighten up house
8. Go to state council meeting I am privledged to be a visitor to.

9.Do paperwork/including copy OT reports for Acute unit
10.laundry
11.groceries
etc, etc, etc.
What I will be doing:
Taking dulcolax and miralax to prep for a colonoscopy.
Continuing to read Queen of the Road!

last week

Bad news: Had to get out my fat pants from storage
At least: some of them are still to big!

Commissioner of the CT State DCF arrested driving drunk

I was looking up an Administrator’s e-mail address. As you know I have recently sent another one of my advocacy letters out.
So here is what I find out, see below. So should I still send her my advocacy letter?
Maybe I should find out who is next in line.

Susan Hamilton, the commissioner of the state Department of Children and Families, was arrested Thursday night by state police and charged with driving under the influence of alcohol, police said Friday.
Hamilton, a well-known attorney who served at DCF before becoming commissioner in 2007, failed a field sobriety test after being spotted by a trooper on Interstate 91 near exit 11 in North Haven at about 7 p.m., according to state police. She was riding in her personal vehicle, not a state-owned car.
Hamilton's rise through DCF has brought her from being a front-line child abuse investigator to being the head of an agency with one of the largest budgets and workforces in state government.
Despite the well-documented controversies and problems at DCF, 41 candidates applied when the commissioner's job opened up, including 29 from outside Connecticut. Hamilton, 42, was chosen from that large group. Hamilton was recommended as the top choice among three finalists by a three-member screening committee that included Gov. M. Jodi Rell's chief of staff, M. Lisa Moody.
In 1998, Hamilton was appointed by Kristine D. Ragaglia, the agency's commissioner, to head DCF's legal division, where she oversaw 13 lawyers and 23 paralegals. The West Hartford resident holds a master's degree in social work and a law degree.
"I consider any instance of drinking and driving to be a serious matter, and I am disappointed that this incident occurred,'' said Republican Gov. M. Jodi Rell. "I also believe this to be an aberration for Commissioner Hamilton, whose personal and professional conduct has been heretofore exemplary over a 16-year public service career. Commissioner Hamilton has expressed her remorse to the employees of DCF and to me and has pledged to take every action to ensure this never happens again."

My latest advocacy letter and request for help

From: Grace Wallis
Sent: Monday, January 26, 2009 6:34 PMTo: Ray, Care CoordinatorCc: Beth, Care Coord. Supervisor; Lisa, CT family network; Shari, Administrator favor-ct.org); Daliah, Volunteer DCF worker@ct.gov); Brian DCF Administrator @ct.gov); father; Julie Therapist at sub-acuteSubject: Where are you? Henry DOB/99

Dear Ray,
I am pretty sure it has been 14 days. Are you out there? I know you are overworked but please do not forget me, Henry and Harry.

Did you know that with out care coordination I am not able to access services from Favor? There is a definite flaw in this Connecticut mental health system.
In Ohio kids like Henry qualify for the county mental health system and are assigned a service coordinator that does not drop them like a hot potato in a time limit of about 3 months even if they go to sub-acute. Henry has a SEVERE chronic neurological brain disease and will need constant care coordination at least until he is 18 and odds are for the rest of his life.
What happens when care coordination has to be dropped? Let me share with you my experience. Advocacy services from Favor are discontinued. The school at the sub-acute did not get the IEP service and goal pages for a whole month while he was attending. This means they were not aware he qualified for OT services and needed a sensory diet. He has needed to be restrained three times. You would think that if a kid needs to be restrained there would be more of an effort to obtain his records or communicate with staff at his previous school (which they had releases for) and see what strategies have worked or been tried by others.
Henry’s transition to the sub-acute has not been easy either. He started in a double with a roommate he liked. I helped him put away and set up everything in his room. Unfortunately He and his roommate were moved with in 3 days of his arrival. Jason and his roommate were moved to a triple. Not a great idea. Henry always asks for a single room because he has severe enuresis. I realize after over two weeks after the move to the triple that NO staff member helped him put his things away and sort which was his desk vs. roommates. This would be wrong for a typical child but very bad judgment for a child who has ADHD and difficulty organizing/putting things in desks/and clothes in drawers. In addition food and drinks are allowed in the rooms. A desk he shared w/another student was soaked w/water that had been there for days, Henry likes to make his own science experiments! When I I realized the situation I organized his room by putting clothes away and toys books, and cleaning off the desks. There were several days worth of urinated on bed clothes/sheets under his bed and in the corner of the room. His bed had sheets on it with urine even though he had been gone overnight on a pass. Of course I complained. Henry did not like the 3rd roommate who ended up having to be moved out.
About two weeks later just after Christmas I told a staff person Henry’s room smelled like urine. The smell was horrible. She said she couldn’t smell anything but would check it. It also looked like a cyclone had gone through it. Many of his Christmas gifts were stuffed in a box and under his bed. A small Christmas tree decoration we had brought at Christmas (because the unit took down the tree in the living room as a consequence) was not put up because the outlets didn’t work.
The next day I came to take Henry on a pass for dinner. The room still smelled like urine so I checked his drawers. He had over five days worth of peed on clothes in his top drawer which had soaked the clean clothes. Henry was very frustrated with me and we ended up staying on the unit. My mother and my sister helped me clean his and his roommates’ room. We had 3 large bags of dirty wet clothes and bedding, 2 bags of stuffed animals to be laundered and several bags of garbage. We spent 3 hours cleaning up. There was even urine in the trash can water on the desks again and food in the closets and under the bed. Yes, I complained again.
Henry now is in a triple by himself. The roommate was moved which made him sad and worries me that he may have two other kids move in. One of the excuses given to me about this whole situation was that the unit is short staffed. If they are they should not be accepting additional children until they are staffed appropriately to meet the needs of the children.

I am sharing my story in hopes of trying to change the system. I know all of the staff involved feel overworked but please don’t give up on kids like Henry and help me to change this system. I look forward to your call.
Sincerely,
Grace Wallis Gibson, M.Ed.
Harry and Henry’s Mom

Preparing for team meeting/Gym requirements = broken heart

Check these e-mails out. Planning is everything
Names changed to titles to protect the innocent!!!

Sent: Saturday, January 24, 2009 10:27 PMTo: School Psych'; School Principal; : School/Teachers: Violin teacher; Spanish'; SLP';Media; Nurse'; Math Resource'; '; Social worker'; 'Special ED Para'; Music'; 'Gym'; Cafeteria Mgr.'; boys & girls village therapist and Dad
Subject: FW: 1/29 meeting for Harry few questions

Dear School Psych,
During our February team meeting I would like to discuss Harry’s transitions and organizational needs related to specials such as violin, and media. I am not sure if all of the Specialists are aware that Harry has ADHD and has IEP goals related to organizational skills.
I would also like to see how he can be assisted in the gym requirements. This past fall Harry had been really excited about the fieldtrip and race on the track but when I picked him up from school the day of the field trip he felt very sad. He told me he came in last. You know Harry is small in stature and it is not surprising that he did come in last. He is very sensitive about this. My heart just broke for him when he told me this. I think it was very discouraging to him instead of motivating him to practice running. I think the Phys. Ed component is very important and I am aware it is one of the state benchmarks but would like to see more team work than competition. For example, wouldn’t it be better for the coach to encourage the class to be timed as a class and encourage the 10 first kids that finish to go back and cheer on and run with the last 10?
Thank all of you for your time, sincerely,


From: Grace
Sent: Saturday, January 24, 2009 11:28 AMTo:Principal, Social Worker, and School Psych Cc: ; 'therapist@boysvill.org'; Dad); screener re: sensory integration'Subject:
RE: 1/29 meeting for Harry few questions

Hi School Psych,
Could you e-mail an agenda to all participants before the meeting?
Please include
Med changes
classroom performance update
Update from Spec. Ed. Instructor
review results Psych. observation
speech results
sensory motor results
homework modifications
update re:Harry’s working w/therapist John (He and Mrs. School social worker have releases)

I would like staff to bring their appointment books in case we run out of time we can schedule a follow up meeting for the next week. Even if we do complete our tasks in a timely manner I would like to schedule the February team meeting date. I greatly appreciate staff’s time and schedules, however, I do not want to rush through these important issues.

Thank you, sincerely,

Grace, M.Ed.
Harry’s Mom!

From: Principal, Sent: Tuesday, January 20, 2009 10:15 AM
To: ; Grace, Social worker;,School Psych: family network
Subject: RE: 1/29 meeting for Harry few questions

Grace,
This is a scheduled team meeting and not a PPT. Team meetings are always 30 minutes. If we go over, we do have coverage, but we do try to be respectful of the time and schedule since we all have other duties. Is State Family Network person coming to the meeting?
See you then,
Principal

From: Grace
Sent: Monday, January 19, 2009 8:20 PMTo: : Principal, Social worker; School Psych
Cc: CT family network
Cc: LSubject: 1/29 meeting for Harry few questions

Dear Principal and School Psych,
I noticed on the invitation that the meeting is scheduled for only 30 minutes. Will that be enough time to review the results of the speech eval, the sensory screening, Psych's timed studies and classroom update since the last meeting? Please consider making sure the classrom teacher has coverage in case the meeting goes a little over.
I can not remember the name of the man that is doing the sensory screen. Please let me know. Also is the meeting considered a PPT meeting or just a team meeting?
I am not sure if you have met L, she works with the State family support network.
Thank you for your time,

Grace

Dear Patti,
Thank you for sending this to me. Watching in front of the computer brought tears to my face, and emotion in my chest. Remembering how Jason was restrained in an incorrect basket weave by untrained assistants in his Ohio school still moves me today. I had to clap at the end of the piece even though I was sitting her alone in front of my computer at 1:18 AM.
http://www.youtube.com/watch?v=H3bDciA8p-U&feature=channel_pageSenator Chris Dodd re:Restraint & Seclusion with 3 Wilton parents. He did a great job! P

Happy New Year!

It is very cold here today.
No walking today.
I lost at least 30 lbs between last fall until August.
Harry and I had taken bike rides almost every day.
Stabilized in September, I was actually able to excercise more, ride bikes w/Harry to his school, drop him off and take off riding and walking often for an hour.
Then came October, Candy in the house for Halloween.
Can I resist, NOE!
November, I am to busy getting ready for Christmas to exercise everyday, We have tons of halloween candy left which the quicker I eat the sooner it goes away (how is that for a philosopy)E! and besides it is getting colder outside and not as fun to bike ride.
December, who has time for exercising then. Yea, the Halloween treats are ate up.
OOooops here comes christmas food which is even tastier. Harry's school has this fundraiser that sold goodies which arrive in time for Thanksgiving.
Can I blame the PTA for some of my weight gain?:)
Now it is frigid and I am still not caught up from traveling during Christmas breaks.
I am debating weather or not to send Happy New Year cards out to the last group of folks I did not get the christmas cards out too. Is it too tacky? I still have some of the awesome photos left!
What do you think?
Really I should be cleaning up the house instead of writing!
Well, Jared is almost done with his homework. That is another story.
Take care,
Grace