Posted in Autism, Down syndrome, Education and Special Needs, IEP (Indivdualized Education Plan)

3 Scary Letters: IEP

3 Scary Letters: IEP

brace yourself IEP

Hey parents, is it time for your child’s  IEP meeting?  Are you armed and ready?  After 22 years with my son Nick who has Down syndrome and autism, I’ve learned a few things.  IEP meetings don’t have to be scary.  Click here to find out how you can be ready for one:

@https://nickspecialneeds.wordpress.com/2012/05/21/blog-8-3-letters/

Please leave me a comment if you have any questions or need support.  I am here to help!  That’s what is in my noggin this week.

~Teresa

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Posted in Autism, Down syndrome, Education and Special Needs, IEP (Indivdualized Education Plan)

Blog #135~Final Week in School

Blog #135~Final Week in School

This is Nick’s last week to be in school.  His 22nd birthday is almost here.  Then, the little yellow bus stops coming to the door.  My son Nick, has Down syndrome and autism.  He is aging out of the school system and will enter the adult world.  For the past few months we have been working with his current school and the adult day program he will be attending.  Nick has been at the new program part time for the past few weeks and the transition is going well. All the pieces seem to be in place.

It’s been an amazing journey watching Nick grow and learn.  The times have been joyous and triumphant, while often frustrating and heartbreaking.  Today I want to pause and give credit to all of the teachers, case managers, aides, therapists, bus drivers and school district personnel and respite workers that have helped along the way.

Nick started at the Klein School District (in Texas) at just 8 weeks old.  This early intervention program had a wonderful staff and therapists.  They worked to strengthen his low muscle tone (a trait of having Down syndrome).  When Nick was nearly 3 years old and not walking yet I said to his physical therapist, “I don’t think Nick is ever going to walk”.  To which she replied, “I have never met a child with Down syndrome who hasn’t walked yet”.  And you know what she was right.  Nick did eventually walk at age 3 1/2! 🙂

After age 3, Nick attended the early childhood program at the Arbor School in Houston.  He made so many gains with the combined co-treatment therapies offered by Texas Children’s Hospital.  Not only did he start to walk, he learned how to chew solid food without choking.

We moved outside the San Francisco Bay area when Nick was 4 years old.  I can’t begin to thank the Down syndrome Connection support group along with his therapists, Kendra his Kacy at Learning on the Move.  I learned ways to incorporate a sensory diet for Nick, and how to become an advocate for my son.

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In 2001, we moved outside the Chicago area.  During his elementary years Nick was in a full inclusion classroom.  This worked because of the excellent help provided by his support teacher, along with dedicated teachers, aides and therapists.  It was during this time that Nick’s academic goals shifted to more functional goals in his IEP.  While this was heartbreaking, I remember gaining strength in what his support teacher said.  At the beginning of his IEP meeting in 4th grade Sylvia said,  “Nick has a lot of strengths and we need to focus on those”.

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Nick also began to get private speech and OT at Suburban Pediatric Therapies.  He has learned so much and developed a great relationship with all the staff at this clinic. 🙂

Nick loves to work with Brian…..

Brian and Nick

The middle school years were rough for Nick.  Having the diagnosis of autism along with Down syndrome was a mixed cocktail with a bad taste of frustration (due to lack of speech). This lead to meltdowns and destructive behaviors.  The shift led back to a self-contained classroom.  I don’t think we could have survived this time without the support of NADS (National Down Syndrome Association) and Little Friends Center for Autism.  I learned how to manage the autism component with their help.  Getting support is crucial in a crisis situation as this was.  I also give a lot of credit to his support teacher Jess (aka “The Nick Whisperer”).  She believed in his capabilities, understood him and made the last years of middle school a success.

High school was a self-contained setting.  It was during this time I saw Nick mature and handle his behaviors much better.  He took pride in his vocational jobs both in school and out in the community.  I appreciate all the staff that worked with him and helped him grow during that time.

Working at Re-Store Habitat for Humanity with Ms. R….

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Working at Tabor Hills Residential Community…..

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Nick Senior Portrait….

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After Nick graduated from high school he attended a post-secondary transition program (STEPS) where he continued to hone his vocational skills, had work jobs and community trips.  He has enjoyed this program immensely!  A big thank you for the staff at STEPS for helping Nick navigate his jobs, teaching him new skills, working to make his AAC talker device be a success and assisting with the transition to the adult day program he will start full time next week.

Nick on a delivery run job…..

Nick delivery

This journey with Nick has been a wonderful and wild ride, 34 fire alarm pulls and all!   I am grateful to all who have worked with Nick and touched our lives.  Truly, you all have been angels lighting the path along Nick’s way.  That’s what is in my noggin this week. 🙂

~Teresa

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Posted in Autism, Down syndrome, Education and Special Needs, IEP (Indivdualized Education Plan)

Parent Tips for Better IEP Meetings

Parent Tips for Better IEP Meetings

It’s that time of year when parents hold their breath in anticipation of IEP meetings.  IEP stands for “Individualized Education Plan”.  An IEP is done for a student who has special needs. These meetings are held each year to update the student’s current level of functioning, progress and goal planning for the following year.

brace yourself IEP

Many parents dread these meetings. I was one of those parents who did for many years.  But after 21 years I’ve learned a few things on how to make these both productive and cooperative.  My son, Nick has Down syndrome and autism.  Here are some parent tips for better IEP meetings:

https://nickspecialneeds.wordpress.com/2014/03/17/blog-88-parent…r-iep-meetings/

Thank you for reading and sharing Nick’s world.  That’s what is in my noggin this week!

~Teresa

Posted in Autism, Down syndrome, Education and Special Needs, IEP (Indivdualized Education Plan)

Blog #102~Special Needs Summer School- ESY

 

Blog #102~Special Needs Summer School~ESY

During the summer months, a child who has special needs may qualify for ESY (which stands for “Extended School Year”).  ESY is usually a half day program which allows someone like Nick who has Down syndrome and autism to continue working on IEP goals.  This benefits the student with special needs by keeping the momentum and daily structure which is so vital.

Nick’s teacher, Andrea Lawler put together a montage of his summer school program. Flipping through the pages of this book made me smile. It also put a lens on all the cool things Nick gets to do in the ESY program.  Take a look……….

Nick’s ESY Yearbook 2014 at Neuqua Valley High School:

Part of our morning routine was our “Morning Meeting.” Here Nick is letting us know that he is happy, however, he usually loved to be a goof and always point to sad! 🙂

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Nick’s version of yoga! Everyday we did a yoga routine with the “Let’s Get Ready to Learn” program.

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Who doesn’t love fireworks! Celebrating the upcoming 4th of July with a little fireworks show!

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Nick thinks this is way cool 🙂

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Mid-rock, one of Nick’s favorite dance moves. Who doesn’t love a dance party every now and then!?!

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Enjoying his snack time.

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Once a week we would go to the computer lab.

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Bingo game with some augmentative-communication during speech group!

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Being silly while working in the production room sorting sugar packets.

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The students went to the production room on Mondays! No fire alarms in the room though. 🙂

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Watching and listening to our book during reading group. This was Nick’s favorite spot to stand in during group time. He’s doing “elbow” which is his version of a high five.

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Placing his order during one of our weekly community trips. This trip was to Burger King.

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Who doesn’t love Burger King breakfast!?!

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This smile says it all!

I hope you enjoyed a glimpse into Nick’s world at ESY. A BIG thank you to Nick’s teacher, Andrea Lawler for putting together this awesome summer school yearbook.  In addition, I want to thank  all the teachers and aides for taking the time out of your summer break to continue to teach Nick. This allowed me to continue going to work without having to hire respite care. It also kept me from going bonkers with him home all day.  That’s what is in my noggin this week.

~Teresa 🙂

 

 

 

Posted in Autism, Down syndrome, Education and Special Needs, IEP (Indivdualized Education Plan)

Re-Post~Navigating a Special Needs Child in School

Re-Post~ Navigating a Special Needs Child in School

back to school list

It’s that time of year. The stores are stocked with back to school supplies now.  Having a child with special needs can be challenging when dealing with the school system especially with the IEP’s.  This week, I am re-posting a blog I wrote about navigating your child with special needs through the school system.  I have included my own back to school list of things that I have learned over the last 20 years with my son Nick, who has Down syndrome and autism.  Check it out @https://nickspecialneeds.wordpress.com/2012/10/01/blog-24top-10-…through-school/

That’s what is in my noggin this week 🙂

~Teresa

 

Posted in Autism, Down syndrome, Education and Special Needs, IEP (Indivdualized Education Plan)

Blog #88~ Parent Tips for Better IEP Meetings

Blog #88~ Parent Tips for Better IEP Meetings

My 20-year-old son, Nick has Down syndrome and autism. While driving to his IEP meeting last Monday it occurred to me that he only had one more of these next year.  With 15+ IEP meetings under my belt, I have learned a lot about how to become an effective advocate for my son.  IEP stands for “Individualized Education Plan”.  An IEP is done for a student who has special needs. These meetings are held each year to update the student’s current level of functioning, progress and goal planning for the following year.   There was a time when I was terrified and intimidated by IEP meetings. Here are some things I’ve learned to make an IEP meeting be effective and run smoothly.

brace yourself IEP

Nick’s senior portrait…… 🙂

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Here are my top 10 parent tips for better IEP meetings:

1. Establish communication with all the teachers, therapists, and other key members of the IEP team via email.  Send a communication notebook back and forth in your child’s backpack.   Attend conferences, open house events and if you can, chaperone at field trips and volunteer in the classroom.  All of these things will help to build a relationship with the staff and making you feel more comfortable. 

2. Designate one notebook for all meetings, conferences and trainings related to your child.  Keep a folder for the current IEP and progress reports.  Review these prior to the meeting. 

3. After you review your child’s goals, make notes for the support teacher/case manager of what you’d like to see for the upcoming year using an “IEP planning form”. Click on the link at the end of this blog to obtain a form.   

4. Request a copy of the IEP draft (including present level of academic functioning, and all proposed goals) to review BEFORE the meeting.  Go through this with a fine tooth comb making notes in red ink of any questions you have or things you would like to see added. 

5. Learn your child’s educational rights. Click on Wrightslaw link provided at the end of this blog below. 

6. Don’t hesitate to ask questions and seek clarification. 

7. If you feel unsure or overwhelmed bring an advocate from your local support group or a seasoned IEP parent to the meeting. 

8. Keep in mind that according to the law; schools do not have to offer the best, they have to offer what is “most appropriate” for your child. 

9. The child should be the center of focus at the IEP meeting.  A parent’s dream for their child may not be what the reality is.  Keep an open mind to this. 

10. You know your child the best.  You are a equal part of the team, speak up!

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If you have serious doubts or concerns about the IEP, ask to take it home and review it further.  You are NOT required to sign it if you disagree or have any uncertainties.  You only need to sign that attended the meeting.  Put any concerns that you have in writing and returned them to school with the unsigned IEP.  You can request another IEP meeting.

IEP Planning Form for Parents:

http://www.greatschools.org/pdfs/2200_21-IEPplanning.pdf?date=3-11-02

Special Education Rights:

http://www.wrightslaw.com

IEP meetings don’t have to be a scary thing.  Do your homework beforehand. If you are prepared and keep the lines of communication open, then they can run quite smoothly.  That’s what is in my noggin this week! 🙂

~Teresa 🙂