Posted in Dual Diagnosis Down syndrome and autism, Education and Special Needs, IEP (Indivdualized Education Plan), Parenting Special Needs, Resources for Special Needs

Blog #236~Need IEP Help? The New Go-To Guide: Special Education Savvy

Blog #236~Need IEP Help? The New Go-To Guide: Special Education Savvy

IEP Season is here, do you need help understanding the process and how to become a better advocate for your child? I’ve got the resource for you, just in time for IEP season. It is the new go-to guide, Special Education Savvy: A Mom’s Guide to Mindset and Effective Advocacy Throughout the IEP Journey and it’s a must read! I received an advanced reader copy of Mary Beth Gilliland, M.ED book which was just released last week. The author literally takes you the reader, by the hand and guides you step by step on the IEP process.

IEP stands for Individual Education Plan, which is a written document outlining the program of special education instruction, supports and services that a student with a disability needs to make progress in school. IEP’s can be complicated and daunting, especially for moms who are new to navigating this journey with their child. I was one of those moms, my son Nick, has co-occurring Down syndrome and autism (DS-ASD). This new book, Special Education Savvy is the book that I wish I had in my hands 27 years ago.

Special Education Savvy stands out in my mind as different than other special education/ IEP/advocacy books for several reasons. First of all, the author Mary Beth Gilliland feels like a mentor that is sitting right there with you at an IEP meeting. She provides sections that include basic special education 101, advocacy strategies, IEP meeting tips and more. You will also learn how to handle the uncomfortable and often challenging encounters that parents may face when IEP’s, when aren’t being followed or their child is not making progress. Second, this book is easy to read especially for busy moms who are juggling a multitude of responsibilities. The technical jargon associated with special education is clearly spelled out making it easier to understand. Mary Beth also breaks down every aspect of the IEP process, so you don’t feel overwhelmed. Finally, as the title suggests you come out of each chapter feeling confident with a savvy mindset ready to advocate for your child.

I found myself shaking my head, yes as I read each chapter. Mary Beth uses clever analogies to make important points about a student’s rights along the technical stuff like IDEA (Individuals with Disabilities Education Act) and FAPE (Free and appropriate public education). Again, she clearly explains these tough areas and makes the information parent friendly.

As a DS-ASD consultant, advocate and author of A New Course: A Mother’s Journey Navigating Down Syndrome and Autism (available at ) I highly recommend Special Education Savvy. It is the ultimate instruction manual for understanding and advocating for your child’s IEP. You will feel more educated and empowered with this well written toolbox of strategies. Ultimately, this knowledge will help to ensure your child receives the services and support to be successful in school.

That’s what is in my noggin this week. Now, I am off to find a cute pair of yellow flats and get savvy for April to advocate about Autism Awareness Month.

~Teresa 🙂

Follow us on social media on Facebook and Instagram @ Down Syndrome with a Slice of Autism and on Twitter @tjunnerstall.

Posted in Education and Special Needs

Blog #43~Taking the Next Step after High School

Blog #42~ Taking the Next Step after High School

In a few months, Nick will be walking across the stage to accept his high school diploma.  We are not doing the typical things you do for the senior year.  No need to reserve the tux or limo for prom.  It’s not in the cards to visit any college campuses.  And ten bucks says that the hat and tassel are going Frisbee air born as he crosses the stage at the NIU Convocation Center.  Question is….. What does someone who has Down syndrome and autism resulting in severe cognitive and speech delays plan to do after high school?

Actually, since Nick has not met the academic requirements needed for a diploma, he will receive a “certificate of completion” upon graduation.  He did letter in high school and a look at that GPA.🙂

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Once the “certificate of completion” is put on the shelf, we move into the next phase for Nick.  The program is affiliated with the school district and called STEPS (Supported Training Experiences Post-Secondary).  Under the *IDEA law, a student with special needs may continue with high school or enter a transition program up until they turn 22 years old.  The decision for placement is based on the child’s individual needs.  Students with developmental delays may benefit more by having extra time to work on vocational, social/leisure, self-help skills along with their educational training.  Many students who are higher functioning academically may be able to take college courses and have paid jobs.  Last week we had the opportunity to visit the campus and get a closer look at the STEPS program.  Al attended the first session.  I followed up with Nick since we had to do a team tag with him and went to the second session geared for graduating seniors.  While we waited for the second meeting, Nick and I took a tour of the building. By the way, all but one fire alarm is not covered but I bet it will be soon.🙂  He loved the campus, especially the sensory room.

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So here’s what I learned about the next phase for Nick.  The STEPS program is designed to build a bridge between school life and adult life.  The focus is to identify what services are needed and what linkages need to be made to help your child be successful in adult life.  The questions not to ponder are as follows:

1. What does Nick need to connect to the next level of adult life? 

2. When finished with public school, what type of work will Nick be involved in (paid job, volunteer work?) 

3. Will Nick participate in a vocational and/or life skills day training program or enroll in a degree-seeking program?  

4. Upon completion of public school what arrangements need to be made for independent living (community activities, living arrangements, sports and recreation, transportation, healthcare, financial support, emotional support)?  How do we plan to access them? What supports are needed?  

So the task at hand is to figure out what Nick is good at and also what he likes to do.  From there we work with the team to build a program with this in mind.  The three main areas are educational and vocational training along with building his independent living skills.  Each classroom has a function in the building.  There is a kitchen to work on cooking skills.  One classroom is built around vocational skills (with can crushers, shredders, work bins, and the campus micro-enterprise that includes making note cards and beaded jewelry.) A current STEPS student has her own business making beaded jewelry.  Check it out at!  Another room is for fitness and recreation filled with music, a Wii gaming system and comfy couches.  There is also a sensory room along with a few others that are used for academics and working on self-help skills (like time management, money handling, riding public transportation, etc…) Again, the program is centered on the individual their goals and getting them to that place by the exit date which is the day before their 22nd birthday.  I should add here that some students exit earlier if they reach a place where they are working independently at a paid job.

So Nick will have new jobs next fall and opportunities to do community service along with social functions (clubs, dances, bowling, etc…) It looks much like what he is already doing in high school but more laid back (no school bells, the students manage their own schedules.)  Looks like I will need to get an app for that.

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I felt better after seeing the campus and visiting with the staff.  Amazing how the anxiety level goes down when you can actually get a visual of what lies ahead.  Now all I need to do is answer all those questions above, yikes!  Maybe I’ll go make a cup of tea and mull over it. I’ve got a few weeks until Nick’s IEP meeting. 🙂

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That’s what is in my noggin this week, stay tuned maybe I’ll have some answers by mid-March!


*From Wikipedia: The Individuals with Disabilities Education Act (IDEA) is a United States federal law that governs how states and public agencies provide early intervention, special education, and related services to children with disabilities. It addresses the educational needs of children with disabilities from birth to age 18 or 21[1][2] in cases that involve 14 specified categories of disability.  In defining the purpose of special education, IDEA 2004 clarifies Congress’ intended outcome for each child with a disability: students must be provided a Free Appropriate Public Education (FAPE) that prepares them for further education, employment and independent living.[3]

Under IDEA 2004:

  • Special education and related services should be designed to meet the unique learning needs of eligible children with disabilities, preschool through age 21.
  • Students with disabilities should be prepared for further education, employment, and  independent living.