care journals

[Roxanne Morris]

Just to share a tidbit of info.... This year i created a care journal for my daughter's teachers. The PPCD teachers often know a lot of general info about different illnesses and learning disabilities, but my daughter's symptoms and signs of illness tend to deviate from the norm. In her journal I started with a few pages on my point of view on discipline and communication. Then i added a complete medical history including: Medical contacts, emergency contacts, and insurance info. Then, in sections, I added brief descriptions of my daughter's illnesses i.e., hydrocephalus-signs and symptoms of a shunt malfunction, epilepsy-signs and symptoms of a seizure/ how to respond during a seizure/ seizure tracking chart, etc., etc.,. Lastly, I added a few pages on communicating with a deaf child. Like, not coming up behind her, and getting down on her level. In the back of the book I added some of the signs she is most familiar with (cut and paste ASL pro). This has made the whole IEP process fly by. The teachers also appreciates having the child specific information on hand. This also helps them in case of emergency. Last year they had to take my daughter to the hospital and had no info on her illnesses at all. Any-who just an idea. I'm a little over the top when it comes to my daughter somtimes. As I say luck favors the prepared.

[jensmom]

I am a special education teacher and I would LOVE having specific information like this! As you said, we generally know at least a little about a lot of different syndromes but usually have to research specific information when we have a child with needs with which we may not be as familiar.
Sounds like you are on the right track! I hope your daughter's teachers appreciate your efforts. :)

[jenml]

.... This year i created a care journal for my daughter's teachers. ......This has made the whole IEP process fly by. The teachers also appreciates having the child specific information on hand. This also helps them in case of emergency. Last year they had to take my daughter to the hospital and had no info on her illnesses at all. Any-who just an idea. I'm a little over the top when it comes to my daughter somtimes. As I say luck favors the prepared.
This is awesome... I, too, am a spec ed teacher, and this kind of info is great for subs or for other folks who come in and out of the room. I supervise a caseload of about 10 kids in about 7 different classrooms (inclusion...), and I have at least that many paras and teachers. I cannot schedule anything for the first half hour of school because I use that time to shift staffing around and spend time with subs who are new to our building. My staff and I create "subnotes" for each classroom (for each identified child and we keep it in that classroom) which is a very less formal sketchy version of what you are describing. However, if a parent makes notes for me, I add that in their as well... a quick little refernece guide to the do's and don't's for a newbie to be more productive.

Our subnotes often include notes like "do not talk to him from behind", and (a big note, that sounmds like common sense, but I write it on each appropriate note page) "do not talk about this child in front of him (for instance, like a nonverbal child who may not seem like he is listening or understanding you, and you have the naive sub who will talk about the child's disability or say IN FRONT OF THIS CHILD "why does he do that....", etc.
A lot of what we add to the notes are what is listed in the first few pages of our IEP's which list "strengths/concerns/modifications/adaptions", but I don't take the IEP out for every sub... confidentiality, and it would take me two hours!! ;) Our IEP's are 11 pages long WITHOUT including the goal/objective pages... so it could be 15-35 pages long with all told. Phew. Too much info for a one day sub!!! That's definitely the hardest part of my job!!

Your "carejournal" is fabulous.... I would encourage all parents to make their own notes like that. No teacher that I know of would consider you "over the top". Such a valuable tool.

For a summer program, I made a video showing the summer staff how we position one child in his equipment (getting him in, the fit, getting him out, feeding, toileting, communication.. etc. I do that for the very detailed needs of a child...

[Roxanne Morris]

I went to the last IEP meeting and the women were like, "We haven't had a chance to get to know your daughter so I will first put down some baseline goals for such and such a developmental milestone and we will specify her goals at the next ARD.". I then spoke up and said I have brought a journal outlining her strengths weaknesses limitations illnesses and warning signs of her many episodes. I took two hours discussing each illness its symptoms and limitations pertaining to my child what the teacher should do in the event of each thing and included the made-by-mommy dictionary of the signs she frequently uses. They were so intrigued by the level of research I did on everything. They asked me questions just for their own understanding and made me feel so comfortable about their ability to be open minded to the unique aspects of my daughters illnesses. Such as, her absance seizures, laughing spells, and opst dictal activity. They made me feel so much better about leaving her there. It is so hard to leave a child with strangers all day when the child is unable to communicate on a level enough to say if someone has hurt them or their feelings. They said my level of involvement impressed them and inspired them to challenge themselves to help my daughter reach those developmental and communication goals i wanted for her. The teacher has a degree in ASL her paras also know sign and the classrooom is run by picture schedule. I am so elated and relieved. I strongly feel that all parents should make a journal like this for their child. It comes in more useful than you think it will. The teachers really do appreciate it! Non of them thought or treated me like i was being too neurotic!

P.S.
Amber was in the hospital all weekend with breakthrough seizures but is doing well now that she has been switched to depakote. I took her home before the meeting and went straight there. LOL I was unslept unwashed and unsightly but I made it. Now as you can imagine i need to go take a nap.

[c01dunlap]

...They said my level of involvement impressed them and inspired them to challenge themselves to help my daughter reach those developmental and communication goals i wanted for her. The teacher has a degree in ASL her paras also know sign and the classrooom is run by picture schedule. I am so elated and relieved. I strongly feel that all parents should make a journal like this for their child. It comes in more useful than you think it will. The teachers really do appreciate it! Non of them thought or treated me like i was being too neurotic!

P.S.
Amber was in the hospital all weekend with breakthrough seizures but is doing well now that she has been switched to depakote. I took her home before the meeting and went straight there. LOL I was unslept unwashed and unsightly but I made it. Now as you can imagine i need to go take a nap.
Oh, Roxanne, that is wonderful news on the meeting!! It is really neat that they expressed such enthusism, and nothing negative (a la neurotic mom, LOL).

And I also have to say {{{HUGS}}} for the stress and emotional drain the hospital weekend and seizures must have put you all through! Hats off to you for going anyway, and gathering up enough strength to advocate for 2 whole hours!

Hope you get more than a short nap! (Although parents rarely do, huh? ;) )

[Roxanne Morris]

Thanks so much!
I never knew what tired was until my daughter began to seizure all night. LOL Thank God for small miracles ( like Depakote), and large ones (my beautiful babies).

[jenml]

.....They were so intrigued by the level of research I did on everything. They asked me questions just for their own understanding and made me feel so comfortable about their ability to be open minded to the unique aspects of my daughters illnesses. ..........I am so elated and relieved. .......The teachers really do appreciate it! Non of them thought or treated me like i was being too neurotic!


Hooray!! Good for you! So many positive developments! That's wonderful.

I have also had a parent make a "dictionary" as to the words/word attempts their son made.... soooo helpful!! Some sounds were so similiar, butthe parents documented that he meant different things by them in different situation... it was wonderful... and thankfully, we (teaching staff) were able to add a few to his list that we came to understand in an educational environment. I encourage parents to do the same (with sounds and/or signs). Wonderful.

And I hope you got some sleep!! And glad things have settled down and that your daughter is okay...

[jenml]

Just found out I have two incoming Kindergarteners on the spectrum from different countries, both non-English speaking, and one is nonverbal... oh how I hope their moms prepared something of a carejournal for us... no (IEP/other) paperwork, nothing so far!

I can't believe school starts in five days!!!!! Oh, what a nice summer it has been (even with the difficult parts...). I don't know if I'm ready to go back! :eek: (And it doesn't help that my school is not opened to teachers yet because of major renovations including asbestos abatement....

So another heartfelt plea to all you wonderful parents to get your carejournal (or list) ready for your child's new teacher!
(usually a list of favorites, do's, don't's, signs/verbalizations... is helpful).

Just thinking about school starting and thought I'd reiterate this wonderful idea....

[aligreat]

Just found out I have two incoming Kindergarteners on the spectrum from different countries, both non-English speaking, and one is nonverbal...

At my daughters' school there are many children from homes where English is not the primary language in the home, and ST! has helped the families with their English. Think about it. In addition to the signs in ASL, the spoken and written English words are done along with many visual representations of the concept being taught. For example, you see a picture of a rabbit, the written English word "rabbit," the ASL sign for RABBIT, hear the spoken English word "rabbit," and there is even one clip with a child holding and petting a rabbit while a second child is signing RABBIT all with the word "rabbit" being spoken in the narration.

[jenml]

At my daughters' school there are many children from homes where English is not the primary language in the home, and ST! has helped the families with their English.

Yeah, I'm going to have to pull out all the stops for these kids... pictures, words, signs... whatever I can.
It's all the "unknown" right now since I met one for a few minutes and never met the other yet...

That's why I was plugging for the carejournals!! ;)
I went into school today and was cleaning out old stuff, and I found a laminated list that a mom made us for her very involved, nonverbal son... helpful!

[tyandsophiesmom]

i just read this thread, life's been crazy as normal, and I love it. I am going to start this for Sophia's new school. This far out ways what I had been giving them prior and what a help it could be for everyone. Thanks so much for the idea!

[Roxanne Morris]

Great I'm glad it could help some other moms and teachers. It has been a tremendous help for my daughter's new teachers. Thanks for all the kind words guys! Happy school year!

[Roxanne Morris]

*cover sheet with pic
*complete insurance info w/ copies (in case an emergency contact should need to take your child to the hospital or doc's office)
*Complete medical history (Form obtained from The Medical Home Project for Children with Special Health Care Needs:
I have a copy I can send you)
*Emergency contact list (doctor and hospital info/ my daughter can't go to the local hosp for her shunt she must go to a different one)
*one section for each primary condition
*Medical description for each section
-Definition
-Secondary symptoms (child specific/ i.e.,how it affects their development)
-Signs of any problems (seizures, shunt malfunctions, whatever else could go wrong)
-what to do in the event of those things.
*Sign language dictionary that I print off of internet sights. (Using signs that my daughter knows and adding to it once a week.)

If you would like to PM your e-mail addy I will send anyone examples and the forms i have found to assist! No prob!

[Roxanne Morris]

This is a cut and paste from my favorite online recource.
The Los Angeles Medical Home Project for Children with Special Health Care Needs


All About Me!!
Parent Notebook
Now Available in Spanish!



COVER PAGE

CONTENTS (Tab dividers - use Avery 8 section colored tabs)

INTRODUCTION

SECTION 1 - IMPORTANT INFORMATION

Important Information Introduction
Important Phone Numbers
Medical History Form

SECTION 2 - CARE COORDINATOR INFORMATION

Care Coordinator Introduction
To Do List
Things to Discuss with Your Care Coordinator-Page 1
Things to Discuss with Your Care Coordinator - Page 2
Telephone Log

SECTION 3 - MEDICAL INFORMATION

Medical Information Introduction
Tips for a Good Visit
Encounters
To Do List
Notes to Take to the Doctor
Telephone Log

SECTION 4 - SCHOOL SYSTEM

School System Introduction
Encounter Form
To Do List
Notes to Take to the Individual Education Plan (IEP)- Page 1
Notes to Take to the Individual Education Plan (IEP)- Page 2
Telephone Log

SECTION 5 - REGIONAL CENTER INFORMATION

Regional Center Introduction
Encounter Form
To Do List
Notes to Take to the IPP/IFSP
Telephone Log

SECTION 6 - OTHER INFORMATION

Other Information Introduction
Encounter Form
To Do List Spanish
Notes to take to the .....
Telephone Log
Medication Log
Equipment Log

SECTION 7 - RESOURCES

Introduction
Resources

SECTION 8
This is a blank section for families to use as they wish.

[STMom]

Thanks you soooo much for this! ;)

[archer210]

The MA department of public health puts out a guide for resources for children with special needs in the state. theres a lot of info in it so I won't get into it here but the link is

www.mass.gov/dph/fch/directions

P.S. be ware of the other link it took me to a site I REALLY didn't want to go to. :eek:

[Roxanne Morris]

Thank for that K, cut and paste can be an embarrassing thing. :o

[mrupp]

I was trying to look up the Los Angeles Medical Home Project website and I got something I really didn't want to see. :mad:
How can I get to where I want to go with out the nasties :eek:
Any help would be appreciated.

[Roxanne Morris]

I can't for the life of me figure out how that is happening to everyone but i triple tested my links and will post them again. Geese-a-lou... that's horrible. I haven't pulled up anything like that at all.

[Roxanne Morris]

some resources i've checked out myself.

http://www.medicalhomeinfo.org/tools/med_home.html

http://www.ohsu.edu/outreach/cdrc/medicalhome/docs/carenotebook/Medical_History.pdf

http://mchneighborhood.ichp.ufl.edu/medicalhomela/LA%20Medical%20Home.htm

I tested these links myself... these are the right ones so sorry for that.

[mrupp]

Thank you for posting these links! They were all helpful and each carebook had a different format or "flavor". I know several parents I plan on sharing this with as well as updating my DD 's book.
The doctors and clinics love it when they can flip through her book and find details or photocopy med pages. It's soo easy.
Thanks again for setting me on the right path!! :)

[Roxanne Morris]

Phew just glad they work. No prob. Glad I can help. These things are so hard to find. They should be better advertised or something.