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…… 🙂

scan0016

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!

photo (116)

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 🙂

Posted in Autism, Down syndrome, Recreation/Leisure and Special Needs, Resources for Special Needs

Blog #85~ 10 Great Special Needs Resources

Blog #85~ 10 Great Special Needs Resources

Last week I targeted some links specific topics related to Down syndrome and autism.  I have a few more that relate to a variety of areas related to the special needs population.  You can click right on these links and check them out:

www.wrightslaw.com  Comprehensive information Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law, education law, and advocacy for children with disabilities.

www.woodbinehouse.com  Publishes book for parents, children, teachers and professionals related to special needs.

www.specialreads.com Special Reads for Special Needs Publishing was founded by Natalie Hale in 2000 to answer a need for effective, entertaining reading materials for learners with Down syndrome, Autism, and other developmental delays.

www.hopefulparents.org  Grassroot support for parents of kids with all types of special needs.

www.supportforspecialneeds.com  A community that offers a chance to exchange wisdom and ideas among one of the most powerful group of people we know.

www.leslie4kids.wordpress.com   Comprehensive information on Childhood Apraxia and Speech, parenting and child development.

www.specialsparkle.com   Beautiful jewelry designed and made by a 21 year old young lady who has Down syndrome.

www.downsdesings.com Downs Designs provides a stylish clothing line with proper fitting for unique body types associated with having Down syndrome which is easy to get on and off.

www.hammertravel.org  Offers a variety of travel opportunities for individuals with developmental disabilities

www.nickspecialneeds.wordpress.com   This site which provides information on a variety of special needs topics.  Much of the information specific to a dual diagnosis of Down syndrome and autism including supports, communication and speech/feeding issues, occupational therapy, behavior/ ABA and much more.

Hope you find these additional resources for special needs helpful. That’s what is in my noggin this week. More about Nick’s world next Monday, stay tuned…….

~Teresa 🙂

Posted in Autism, Down syndrome, Education and Special Needs

Blog # 24~Top 10 Things I Have Learned While Navigating Nick through School

Top 10 Things I Have Learned While Navigating Nick through School

This weekend I was prepping for a lecture called “A Parent Perspective” which I do at Aurora University.  For this semester there are two classes one undergrad and a graduate student class all who are/ or planning to become teachers.  Since Nick is a senior in high school I decided to include a top ten list of some things I have figured out over the years. While compiling this list I couldn’t help but think back to those early days. I was a novice and such a chicken when it came to IEP meetings.  I have a degree in teaching secondary education (Kinesiology and Health) but very little experience teaching special education.  I took a class similar to the one I am lecturing while at The University of Texas.  It gave a broad brush of special education and included an internship in a self- contained classroom and gym class. Beyond this I knew very little on how to take the helm and steer these uncharted waters.

Aurora University working with Elliott who leads the classes….

The early intervention program was easy (birth-three years old.)  The staff was nurturing and it was a *can of corn.  Once the cord was cut Nick entered the early childhood/ pre-school program things were more serious and the meetings took on a different tone.

Because Nick had very low muscle tone (a trait of Down syndrome see blog #7 Mama Mia, for more information on DS traits) he was delayed in gross motor activities.  He didn’t walk until age 3 ½ nor eat solid foods.  At age three during the transition from early intervention to early childhood/pre-school I enlisted a private speech therapist who specialized in feeding.  Amazing how one person can impact your life.  Pam opened up my eyes.  She got me thinking outside the box.  She also worked at a private school in Houston and suggested we look at putting Nick there.  The private school called The Arbor School had one opening three days a week.  It was an oasis, this all-inclusive resort with all of the speech, occupational and physical therapy right on campus working together.  They got their hands on Nick and worked magic. Nick attended The Arbor School three days a week and the public preschool program the other two days.  When the IEP came around at the public school, the whole Arbor School team came.   Our entourage sat down and matter of fact like made sure every attention to detail was addressed.  I was stunned.  What you can actually assert for yourself and get all kinds of services, equipment and therapy hours, I had no idea.

Nick at the Arbor School…..

The petting zoo came to the Arbor School during Go Texas Rodeo Week…

In California when Nick was in first grade I found my concerns of his need for a communication system going on deaf ears.  I brought in the Director of the Down Syndrome Connection support group.  The entire staff sat up straight as she advocated for my son.

Nick and I in Livermore, California…..

Much the same in middle school I enlisted the help from Little Friends Center for Autism.  I can’t say enough about the Arbor School, The Down Syndrome Connection and Little Friends.  What a gift they gave me as they showed me how to become an advocate for Nick.

So here is……….….The List!!!!!!

Top 10 Things I Have Learned While Navigating Nick through School

  1. Determine a method to communicate with the staff (communication notebook, email, daily reports.)
  2. Meet with the support teacher to discuss goals for the following year. Request all goals and reports from each department for review before the IEP meeting.
  3. Get everything down in writing in the IEP (from a 1:1 Aid to the chewy sensory toy.)
  4. I am not a bad parent because my child won’t keep gloves on/ or has a meltdown in school.
  5. Sometimes the parent has to be the one to rattle the cage.
  6. Get help when you need it (support groups, workshops, trainings, respite care, etc..)
  7. Know your rights, Read Wrightslaw.
  8. Don’t settle for just any solution if a problem
    doesn’t get better. There is always a better way.
  9. Sometimes as a parent you have to let go of your own dreams for your child so they can move down a different path.
  10. The parent is the biggest advocate for their child with special needs, trust in that.

Bringing support into IEP meeting does give a parent confidence.  But in most IEP’s my hand has been on the helm.  What I know for certain is that communication lines have to stay open.  I also learned to quit beating myself up because Nick had meltdowns (now we know that he was powerless because he couldn’t communicate his needs and it is not my bad parenting.)  Once the autism diagnosis was given, I had to reach out for help get more training and arm myself to fight the big fight.  I quit settling with the school staff and learned that I had to ask for more to help my son thrive. I wasn’t being a bitchy mom; I approached the problems in a matter of fact, but firm manner. And sometimes that means I have to be the one to rattle the cage to obtain services to support my son.  In addition, I found that just because I have a dream for Nick doesn’t mean he can fulfill it.  Facing the fork in the road that separated him from an academic curriculum to a functional curriculum enabled Nick to focus on what he was meant to do. Hello T, he just isn’t ever going to write his name, let go of that academic goal.

So here we are, Nick’s senior year and after riding some rough waves now the seas are relatively calm.  We survived and came out on the other side much wiser and stronger.  That’s what is in my noggin this week.  Until next week, I hope yours will be a *can of corn.

~Teresa

* According to Wiki Answers: The term “Can of Corn” is a phrase used to describe a softly hit baseball as it could easily be caught. The term originated as a customer would ask a grocery clerk for a can of corn the store clerk would grab a can from the top of a stack of cans, and would softly toss the can down to be caught without harm.

 

Posted in Autism, Down syndrome, Education and Special Needs, Speech and Occupational Therapy

Blog #8~ Three Scary Letters: IEP

Blog #8~ Three Scary Letters: IEP

Who would think that the 3 letters IEP could evoke anxiety and trepidation in the hearts of many parents of children with special needs?  IEP stands for Individualized Education Plan.  I used to be one of those scared and frail kittens shaking as I walked into the doorway.  My son, Nick has Down syndrome and autism.  I’ve been through my share of IEP meetings and learned a great deal on how to handle them.  I heard my share of war stories:

“Watch out they will try and get away with cutting your service hours!”

“Why would they do that?”

“Oh the budget constraints and pressure from the school district, that’s why. They are going to say the teacher can address the issues and you don’t need the additional speech therapy hours.”

So enter the neophyte parents into the doorway to face the army of personnel from the school.  The IEP team usually consists of the classroom teacher, case manager, occupational therapist, speech therapist, adapted PE teacher, school counselor, social worker, school nurse and a student services representative. Oh and yes, the parents too. 🙂  I can recall many in the early days crammed in tightly around a table and feeling very clueless in the early days.   The IEP meeting is intended to be a team effort, but sometimes we couldn’t help but feel like it was them against us.

What an IEP exactly?  Here is some information from Wikipedia:

An IEP is designed to meet the unique educational needs of one child, who may have a disability, as defined by federal regulations. The IEP is intended to help children reach educational goals more easily than they otherwise would.  In all cases the IEP must be tailored to the individual student’s needs as identified by the IEP evaluation process, and must especially help teachers and related service providers (such as paraprofessional educators) understand the student’s disability and how the disability affects the learning process. 

The IDEA 2002 requires that an IEP must be written according to the needs of each student who meets eligibility guidelines under the IDEA and state regulations, and it must include the following:

  • The child’s present levels of academic and functional performance
  • Measurable annual goals, including academic and functional goals
  • How the child’s progress toward meeting the annual goals are to be measured and reported to the parents
  • Special education services, related services, and supplementary aids to be provided to the child
  • Schedule of services to be provided, including when the services are to begin, the frequency, duration and location for the provision of services
  • Program modifications or supports provided to school personnel on behalf of the child
  • Least Restrictive Environment data which includes calculations of the amount of time student will spend in regular education settings verses time spent in special education settings each day
  • Explanation of any time the child will not participate along with nondisabled children
  • Accommodations to be provided during state and district assessments that are necessary to the measuring child’s academic and functional performance
  • The student should attend when appropriate. If the student is over 14 they should be invited to be part of the IEP team.
  • Additionally, when the student is 16 years old, a statement of post-secondary goals and a plan for providing what the student needs to make a successful transition is required. This transition plan can be created at an earlier age if desired, but must be in place by the age of 16.

IEPs also include other pertinent information found necessary by the team, such as a health plan or a behavior plan for some students.

The IEP can be daunting on paper, or shall I say more like a ream of paper averaging for Nick around 50 pages total.  The biggest tip I can share is to request all of the reports and intended goals prior to the meeting for your review.  In addition, I suggest meeting with the case manager at least a month before the meeting to discuss proposed goals that will be in the education plan.  That way there are no surprises at the IEP meeting.  If the parent and teacher have a good communication system back and forth there shouldn’t be any.  (For additional support, go to the links and resource pages on this website and look under Wrightslaw, Bridges for Kids-IEP goals and Barb Bateman’s book, Better IEP’s.)

Over the years we have utilized outside advocacy when we felt like the needs of our son might be compromised.  Rewind to 1998 in Houston, when Nick was attending a public pre-school program twice a week and a private special needs pre-school three days a week.  (This was before we could get him in the private school full time). We brought an entourage of very strong women from the private school to advocate for Nick.  Our advocates dissected that IEP and insured that all supports were in place down to the last detail.  That being a nubby rubber cushion for Nick to sit on to keep his core activated and him alerted.  I was floored at the way they spoke up for our son.  I would have never known to boldly ask for these things.

Nick at The Arbor School in Houston, Texas……

The presence of an outside advocate walking in with you at an IEP meeting can certainly make the team members sit up and be on point.  Memorable meeting number two was in 2001 when lived in the east bay area of Northern California. Nick’s language was minimal and he was getting frustrated not being able to communicate verbally.   On this particular occasion we were being met with resistance with regards to the school providing a proper picture communication system and training of staff and parents.  Enter the Executive Director of The Down syndrome Connection by our side.  (DSC is the local Down syndrome support group)  The school’s Physical Therapist asked if she could report first as she had another meeting to attend.  The Social Worker raised her hand and asked if she could go second and then excuse herself.

Without blinking an eye,  the DSC Director calmly said, “Wait a minute, we are all here to discuss Nick’s future, right?  We only have this meeting once a year. The least you can do is stay and be a contributing member to this team.”

No one dared to leave that meeting.  Oh, and yes the communication specialist was immediately put in place to help with the picture communication system for Nick.

Nick in California

There is only one word for these advocates and the others that followed…..Rock Stars!

I have learned from the best.  The frail kitten morphed into a lion that can roar.  Why, because I have to fight for him because he has no voice. I know Nick the best and what works for him.  I don’t have to agree with the team.  In my matter of fact approach I simply state my parent concerns and have them put in writing in the IEP.  So parents, if you don’t agree, then push your chair back, state that you don’t agree and do not sign it. You may have to take it to the next level if you get a push back.  That’s when you use the two words that can evoke the most fear…Due Process!  (Thank you Kendra, Nick’s Private Occupational Therapist for giving me the courage to do these things.)

Nick at private occupational therapy with Kendra

More fun with Kendra

And please, do not call me “The Mom”, or “Nick’s Mom.”  The name is Mrs. Unnerstall.  Yes, IEP meetings can be scary.  But parents, don’t be fraidy cats.  Just get prepared!   Request those reports and goals ahead of time.  Schedule a meeting with the case manager before hand to make sure you are on the same page.  Communicate with the teacher so there are no surprises.  And finally if you don’t feel supported, then bring an advocate to the meeting.   That’s what is in my noggin this week.  Until next Monday, may you find the inner lion within you and fight the good fight!

~Teresa