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….

Nick packaging door knobs_Habitat for Humanity (6)

Working at Tabor Hills Residential Community…..

Nick vacumming_Tabor Hills (3)

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

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