The days are getting shorter, nights are getting crisper - Fall is emerging as a breath of fresh air from the summer heat.  Its back to school time and that brings up many concerns for our children with Rett syndrome.  

School is very exciting! It can also be a time of additional stress and worries for parents and caregivers of children with Rett syndrome. We want to help make this school year as successful as possible!  We believe our parents are the experts in this area and want to share some of their words of back to school wisdom with you.

 

Jackie Babiarz - Wheaton, IL
Cameron AKA Cammy Can, age 4
Entering Preschool

Cammy's school is made up of students who transition there directly through Early Intervention (EI) and tuition based students.  She has a one-on-one aide with her at all times.  Throughout her 2.5 hour day at school, she receives OT, PT and AT.  Her staff uses her Tobii throughout the entire day incorporating it in everything they do and adapting it for every activity so that she can participate.  She can access it sitting on the floor, in her wheelchair and in her stander or anywhere they go in school.  She has been the Greeter for school events, using her Tobii to welcome people at the door.  Cammy has done the introductions and closings for the Winter holiday program too.  We also share daily back and forth with logs and a Set by Step button, which her OT loves as Cammy's timing hitting the button for each sentence is spot on now.  Her school sends me photos and videos of Cammy during the day of her smiling playing with the other students and doing various adapted activities using switches and buttons.
  
Before the school year begins, we send her team an updated version of her "About Cammy" book along with updated medical information/contacts and updated Awareness Card to keep in her medical alert wrap on her wheelchair.  We encourage anyone who has questions whether they are staff at Jefferson or a parent to ask us any questions.  We send parents one of Cammy's Awareness Cards with her Facebook page and IRSF website included.  We want parents to understand Cammy and Rett Syndrome so they can answer questions that their four year old child might have.  

We always want people to fall in love with Cammy first.  We never enter a new situation on the defense or guns blazing.  Her school has been nothing but supportive and given us everything Cammy needed before we could even ask.  I used to be on the other end of the table so I know the types of parents I would want to work with and those I would not want to… you always want to have a good repoir with the staff.   
We always create a team feeling amongst anyone who works with Cammy.  We give her teacher, therapists, aides, secretary, bug drivers, and other staff members Cammy Can shirts. 

 

 

Susan Lee - Birmingham, Alabama
Alyssa Grace, age 5
Entering Kindergarten

Alyssa will be fully included in a regular education kindergarten classroom in her local school.

Best advice: COMMUNICATE, COMMUNICATE, COMMUNICATE! It is up to you
to communicate everything you can about your daughter to everyone who will have contact with her. That is where the “All About Me” book comes in handy! I distribute it to the regular and special ed teachers, principal and vice principal, PE teachers, ALL therapists and aides, librarian, nurse, computer teacher, art and music teachers, and the lunchroom manager. Schedule a meeting prior to the school year to make sure everything is ready for her to start school. Then, ask them to complete a daily communication log. It is impossible to discuss your daughter’s day with her if you don’t know what she did and she can’t communicate it to you. Finally, create open communication with the other parents in the classroom. This will allow them to ask questions and discuss your daughter and Rett Syndrome with their children. This will help foster friendships between their child and your daughter. If you take the time at the beginning of the year to develop a good rapport and open communication, you will be able to work through almost any problems that may arise during the school year!

 

Patty Mevis - Green Bay, WI
Kira, age 7
Entering 1st grade

This will be Kira's second year at this school, as she starts 1st grade.  She continues this year to be in a regular class with her peers and a 1:1 aide with her at all times.  She receives OT, PT, & speech throughout the day, sometimes within the classroom, and at times pull out is necessary.  She has developed some wonderful friends and loves to play with them at recess.  

Kira was new at this school last year and we felt like many things went well.  We started the year by meeting with her team.  We shared with them an "All About Me" book, which included a few pictures and a little about Kira's family, some information about each aspect of Kira's care and Rett syndrome.  It gave a good overview to anyone who meets Kira.  We will again share this updated book with her team this year.
I will also again ask her teacher for a little time to talk to the class about Kira and Rett syndrome.  I did this in kindergarten, in a very developmentally appropriate way, talking with the kids about what they like to do and that Kira is very much like them.  I sent a letter home to the parents in her class, introducing Kira and welcoming any questions about her or Rett syndrome.  This was of course, approved through the appropriate channels. 

We also try to create a team feeling among Kira's staff and our family.  I emphasize my willingness to work on any prep or work with Kira at home, hopefully establishing a mutual expectation of hard work by all of us.  
My efforts have been influenced by a number of families in the Rett community and I thank each of those people for helping me advocate for Kira.  
 
One little new tip for this year...
I'll be bringing individual bottles of Gatorade to our initial meeting with a tag "Go Team Kira.” 

Marie Kral - Downers Grove, IL
Kari Anne Kral, age 15
Entering 10th grade

Kari Anne is in a Multi-needs classroom setting in the District (neighborhood) high school.  She receives grade/age-appropriate individualized (highly adapted) instruction in core academics (English/reading, math, science, social studies, etc.) assisted with a one-on-one aide** in a classroom with no more than ten classmates.  Daily adapted PE and her lunch period are in an included environment.  She is also included in Girls Choir (Goals:  music appreciation and socialization).  She receives OT, PT, Speech.  She is transported on an air conditioned bus due to issues with temperature dysregulation (Central Nervous System Dysfunction).    **Justification for one-on-one classroom aide:  access to educational and recreational activities/opportunities/environment (severe apraxia (limited hand use)) and safety (both physical and awareness)). 
 
Provide a "Getting to Know" booklet about your child describing communication and learning style, health issues, strengths, etc.   Assume until proven otherwise that quality services will be made available to your child.  A pleasant/friendly and determined/communicative approach has been most successful for me.  I appeal to the teacher/therapist/administrators' sense of humanity and community spirit to encourage involvement in the process of obtaining quality services for Kari Anne.  Admittedly, the transition to the high school has been somewhat of a "starting all over" process, but I have faith that common sense will prevail!

 


 

An essential component of the school year is the IEP plan.  Below is a guest blog by Katie Bush that has  fantastic tips and insights. 

"IEPs and School Placement: Exploring Perspectives Empowers the Parent” – a presentation for all school-age families

 

An IEP is HUGE!  At least to me it is.  I have a hunch that those of you interested in the IEP Panel Presentation “IEPs and School Placement: Exploring Perspectives Empowers the Parent” agree with me, and have probably sweated an IEP or two.

Let me start this blog with telling you who I am.  I am a one-on-one para-educator for a high schooler who has Rett syndrome.  I am a home health aide and caregiver for a teenager who has Rett syndrome.  And I am an "adopted" member of a family who has a child with Rett syndrome.  I am "Ellie's one and only" to quote her mom, and have been for 7 years.  I spend about 50-60 hours a week with "my girl" and "my family".  To say that I'm involved with Ellie's 
IEP is an understatement.  I spend at least 35 hours a week living Ellie's IEP with her. 

IT'S HUGE! 

The IEP dictates our life at the school, and will influence Ellie's life after high school.  But . . . you probably already know how HUGE an IEP is.  So, why should you spend your extremely precious and limited time listening to this presentation?  Because it's powerful!

More importantly, listen carefully in order to not sweat an IEP as much.  One should make themselves an Involved Educated Parent (or Person).  This panel session has information that is empowering for those who support a child with an IEP.  I get to see the different sides of an IEP and IEP team, and the approaches that this panel discusses is capable of making a difference in your IEP.  I know this as a fact!  I have seen them in action!   "My girl" is one of the panel member's daughter and I have participated in her IEPs for years.  I have watched what this panel is saying deliver results!  I promise you won't regret spending your time on this presentation.

Panelists:
Sarika U. Peters, Ph.D., Psychiatrist, Vanderbilt University 
Valerie Owen, Ph.D., Special Education Professor
Susan Lee, M.A., Special Educator and Parent
Mickie McCool, Advocate and Parent

 

 “True happiness comes not when we get rid of all of our problems, but when we change our relationship to them, when we see our problems as a potential source of awakening, opportunities to practice, and to learn.” - Richard Carlson


Jenny Mosca, California Family Empowerment Team Representative, has this to add. 

"Remember that the parent is as much of a part of the IEP school team as everyone else. It is absolutely ok to ask questions of the classroom staff and therapists, demonstrate how you do things (such as feeding, transferring, changing, etc.) at home, and express concerns in regards to your child. It's important to establish open lines of communication with school personnel to build a strong relationship. Your child will greatly benefit from this! "

You can find more information on our school and day programs page.