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Monday, May 7, 2012

A New Chapter... PRESCHOOL

We have been extremely busy over the last few months transitioning Rebekah from early intervention to school-based services, and determining how we want to handle her transition. Making a decision to actually send her to school is extremely emotional and scary. One part of us wants to keep her safe and sheltered, the other part of us wants to experience more than we can provide in our home (in terms of socialization with other kids her age, access to sensory rooms, ongoing therapies, and equipment we do not have, etc.).  And, of course, the fact that she has a trach and is medically fragile complicates putting her in an environment where both we and the school staff feels comfortable.

Rebekah turned 3 on 4/21/12 and, according to IDEA, can start school at that time. Because of the amount of paperwork required for her medical needs, it took us a few weeks to cover all of the requirements. School is out end of the month, and it may seem silly to send her to preschool for 3 1/2 weeks, but we are looking at this as a trial run to see how we like having her at a special needs school.  There is a huge debate whether to mainstream special needs kids, or segregate them. There are pros and cons to both views, and there are scenarios that combine both possibilities.

The county that we live is one of the top 50 districts in the country based on size, so we have some options available to us that may not be available in a smaller school district. One of our options is The Washington Center.
Washington Center is a unique “one of a kind” facility. It is a separate school that serves students ages 3 to 21 with severe mental disabilities.  Many of these students have concurrent challenges such as autism, blindness, deafness, or physical disabilities.  The mission of Washington Center is to provide opportunities for students to explore and develop potential for independent functioning and community involvement by addressing students' individual needs and creating a partnership with home, school, and community.

We are starting here because she can be in a classroom with a dedicated nurse, and a 2:1 student:adult ratio. The facility is filled with equipment and sensory items that are perfect for Rebekah.  One little girl in her class started school for the first time this year at the age of 5. The parents were told she would never walk and wouldn't "do much". When we saw her in the class, she wasn't just standing, she was walking and even remained standing for the entire class circle time. She had developed this ability and the stamina to stand for 45 minutes all in the past school year.  All of the children (who from outside/inexperienced eyes probably appeared severely disabled and non-communicative), participated in circle time Big Mac button pushing, making selections, voicing happiness and displeasure... I was happy to spend the day there so I could see the wonderful things they are working on with the kids. Most of all, we are very happy with her classroom teachers and nurse (who will be with her in the fall as well).

Rebekah's First Day of School: Rainbow Fish was the story for the Circle Time. The teacher programmed the Big Mac button to say "rainbow" when pushed. As they read a page to each of the children, they had them press the Big Mac whenever 'rainbow' was mentioned in the story. Rebekah caught on, and pressed the Big Mac when it was placed in front of her.

Rebekah's First Day of School:  "Good job, Rebekah!" Her teacher was quite happy to see her catch on so quick. Rebekah was quite proud of herself and sat smirking and waving her hand in excitement.

During circle time, the teacher talked about the weather. It was a cloudy day today. The students got to touch a cloud as they discussed the weather. Rebekah joined in and swiped at the cloud as well.

Here's a picture of some of the kids in Rebekah's class. She is in a special needs school and all of the children are disabled. One of the considerations in preparing for school is to determine what "least restrictive environment" you want for your child. In Rebekah's case, because of her trach, our options are a little more limited. However, this school is wonderful and there is a nurse, a teacher, and an aide dedicated to her one classroom of no more than 6 kids.

Rebekah's first art project! Because rainbow was the theme of the day, they painted a rainbow with watercolors. She helped hold the paintbrush and was quite interested in the activity, and followed the paint brush/line of paint as it went across the table.

Assessments, IEPs, Special Education Services... Oh My!

This is an overview of transitioning your special needs child from Early Intervention to Special Education Services.

Under IDEA (Individuals with Disabilities Education Act), a federal law concerning the education of students with disabilities, qualifying children are entitled to early intervention services before the age of 3, and public school services from 3-21 years old. For those delayed in multiple areas, there is a battery of tests performed, including a multi-discipline panel of therapists, psychologists, and specialists, leading up to a child's 3rd birthday. IDEA and your rights under this law are incredibly important to parents with children that have any type of delay or behavioral issue. The purpose of all of this is to provide as much early intervention as possible. Just google early intervention and you will find tons of resources that point to the long-term cost-effectiveness and success by providing these services.  So, if your child qualifies for them, please take advantage of what is available to help your child succeed in life!

Child Find
Child Find is a component of the Individuals with Disabilities Education Act (IDEA) that requires states to identify, locate, and evaluate all children with disabilities age 3-21 years old. Before your child's 3rd birthday, contact your local school district and request a Child Find screening to determine if your child is eligible for Special Education Services. Children will be assessed in these areas:
  • Developmental (self-help/daily-living, motor, cognition, social/emotional, orthopedic)
  • Speech/Language (communication)
  • Hearing
  • Vision
Depending on the area and level of delay, the next step may be additional assessment/testing.

In our school district, the next assessment phase is called Arena Testing. This is where a long list of tests take place with your child by a room full of important-sounding people. It can be intimidating being in a room full of people with fancy titles, advanced degrees, and ideas about what your child can/can't do. This coupled with the fact that your child will NOT "perform" as you hope because of being thrown in an unfamiliar environment with tons of new faces and sights and sounds. And the more significantly delayed your child is, the longer this appointment lasts! I think ours was 2 hours long.
We also experienced a home visit for additional data collection, and had the opportunity to have vision and hearing screens done (but we had already had these tests done independently and submitted the reports for consideration). We also had to provide record access to several different doctors and therapists. Much information goes into the prep work prior to the IEP meeting.

Individualized Education Program
An IEP is the Individualized Education Program that defines the special education services (SES) you will receive from a public school district. It is a required document if your child is to receive SES. It is truly individualized for each student, and contains information required by law such as performance, annual goals, special education and related services, accommodations, participation in state and district tests, needed transition services, and measured progress.
Typically the parents go into the IEP meeting and the IEP team will already have a draft IEP available. The team, very similar to the assessment team, will go over the child's goals, requirements, etc. This can also be an intimidating meeting for an unprepared parent. Remember that you do not have to leave the meeting signing anything and you can take the proposed IEP home to review before signing it.
The best preparation for an IEP meeting is any of the Wright Law books on IEPs (One good book: All About IEPs) AND input from parents who have already been through the process and have similar disabilities to your child. Wrights Law website has excellent resources, and Exceptional Parents also has a great resource packet.

Rebekah's IEP Overview
This is a real high level look at the kind of goals we chose for Rebekah's IEP. Each goal has a list of sub-tasks that include many different 'mini-goals', but these are the ones that she will be measured against to determine "success". If Rebekah manages these goals before the end of the 2012-13 school year, we will be able to adjust her IEP. Moderate assist, in the context of creating measurable goals, means that the student does 50-75% of the work.
  1. Put toy in container 2 out of 5 tries with moderate assist. (OT goal)
  2. Transition from floor to sit position 2 out of 5 tries with moderate assist. (PT goal)
  3. Participate/respond in back-and-forth communication using facial, verbal, body cues and/or augmentative communication device. (ST goal)
  4. When Rebekah's name is called, she will respond by turning her head towards the source and vocalizing in response 1 out of 3 tries. (Classroom goal)
  5. When given a toothbrush, Rebekah will grasp it and bring it to her mouth 3 out of 5 tries with moderate assist. (Adaptive Skills goal)
  6. Given a choice between 2 pictures, Rebekah will identify herself in 2 out of 3 tries. (Vision goal)
  7. When given a choice between 2 things (whether activities, toys, etc), Rebekah will indicate a preference in 3 out of 5 tries using eye gaze, vocalization, or touch. (Social Behavior goal)
  8. Rebekah will engage in reciprocal play / turn-taking tasks (such as rolling a ball) in 4 out of 5 tries. (Mommy's goal)
Some great resources for IEP planning (and general disability law): 
  • Wrights Law is the best resource for everything you want to know about Disability Law - from advocacy to education/IEPs to rights as a parent. Their books are excellent resources and you can learn so much about many of the key laws (like IDEA, No Child Left Behind, FERPA, Section 504 & ADA, etc). If you have a special needs child and you don't recognize these laws, you need to go to Wright's Law and do your homework!
  • Partner's in Policymaking is a national program that teaches parents and self-advocates the power of advocacy to change the way people with disabilities are supported, viewed, taught, live and work.  There are hours and hours of free online training available, and many states offer group training on the curriculum with a state-specific focus.
  • Exceptional Parents Unlimited is an excellent resource for a parent facing extraordinary medical, developmental, or parenting challenges. 

Thursday, May 3, 2012

Against the Odds - Living with Trisomy 18

Rebekah celebrated her 3rd birthday on April 21, and she celebrated surrounded by her trisomy family! Thanks to Russ Bowen at ABC's WLOS 13 in Asheville, NC, we were able to share the miracle of her life and the blessing that she is to our family.  We are so very grateful to WLOS for running this Special Report on trisomy 18 and sharing our hope and faith with others! Please grab a tissue before watching and SHARE, SHARE, SHARE!! We want people to know that this is a journey worth walking.  (The direct link to the youtube video is here:

The video was taken during the weekend of Rebekah's birthday. We celebrated with 6 trisomy 18  and 1 trisomy 9p friends. We also had the family of a chromosome 2p- (microdeletion), and two families who have lost their trisomy 18 children. Our friends came from SC, FL, and GA.  Below are just a few pictures followed by a link to our facebook birthday bash photo album.

Josiah decided he wants to be a camerman when he grows up!

Beautiful trisomy kids and their mommas

Rebekah showing off her pretty dress and newfound standing skills

Lisa, trisomy mom to Joey, receives a kiss from Kaylen, who has full trisomy 18 and is 11 years old!

There are many more photos to be seen! Please check them out on our birthday facebook album.