Saturday, March 1, 2014

IEP Success - buckle up, its a long one.

IEP day has historically been one of my least favorite days of the year.   Its a day where you go to your child's school, sit in a large meeting with many professionals who have all been testing and assessing your child, and hear all the things that are wrong with him.*  I have NEVER made it through one of these meetings without crying.

For those of you not in the "know" IEP stands for Individualized Education Plan.  When a child meets a certain number of criteria (such as an Autism diagnosis) they qualify for an IEP.  School's do not just hand these things out willy-nilly as there is a LOT of work that goes into creating one, working towards meeting the goals laid out, measuring progress, etc.  In evidence of this Jake's IEP is 17 pages long.  And that is for a high functioning kid on the spectrum.

When Jake's IEP was first created 3 years ago I had no clue what kind of things I could/should ask for. There are books and websites to help parents know what to expect but at that point I was so flippin' overwhelmed that I actually had a "special needed kid" (that's what Jake calls the kids at his therapy center - as in "those special needed kids", present company excluded obviously!) that I didn't do much homework beforehand.

The first few pages of the IEP are an overview of Jake and results from the assessments that he has been given.  There are four sections:
Social/Emotional/Adaptive Skills
Each section has sub points in which they lay out strengths, weaknesses, concerns, etc.  For example Jake's Communication section has a sub section on his sensory concerns and how impacts his performance at school.   When needs are identified it is noted that a goal needs to be set and the baseline from which he is starting.

Next there is a section for Accommodations/Modifications/Supplementary Aids that are made.  Jake has none for reading, math or written language but he has a sensory accommodation that allows him to have a small manipulative item (toy, eraser, etc) to help him organize and focus.  He also has a communication accommodation that Jake will restate directions to check for understanding.  He also has an accommodation that he will sit on the end to give him space to move around as needed (i.e. he does not always have to be in his seat as long as he is on task).  For this IEP we added a new accommodation that Jake will have the opportunity for additional sensory time when assignments are completed with 85% accuracy.  This was in response to Jake's tendency to rush through his work with little regard for correctness in order to proceed to the next more desirable activity (that's fancy IEP talk, y'all will learn :)

Finally we come to the meat of the IEP which is the goals.  Coming into this meeting Jake had one (!!!) goal on his IEP.  Refer back to paragraph 2.  This is a direct result of his mom having no clue what to do when I attended his first IEP meeting in 2011.  True, there were six benchmarks under this goal but the main focus of his therapy at school was in his comprehension of spoken and written words.   As a results of this goal and benchmarks Jake was then afforded (2) 30 minute special ed sessions per week and (1) 20 minute speech therapy.

In preparation for this upcoming meeting I contacted the amazing therapists at ACI (Autism Concepts) in Kansas City for help.  They had reviewed Jake's IEP and kindly informed me it was "weak" and, of course, they worked with Jake on a regular basis so they were well informed as to his strengths and weaknesses.  I was able to set up a conference call both with Nancy Champlin, who founded ACI and its 5 centers across the US, and Melissa who is the director of the KC campus.   Below I'm going to bullet out some of the things we discussed going into the meeting:

1- The principal or school psychologist must be present.  Always request that the district Autism Consultant attend the meeting as well.
2- When they run through the present level of performance it should be across all levels - both social and academic.  This will dictate the number and type of goals that are set for Jake later in the IEP.
3 - Go into the meeting prepared to clearly state my ideas and goals for Jake.
     - In addition to academic concerns this should also include "significant concerns with Jake being able to work independently and with a number of peers
     - Social skills - Jake has such a deficit that he cannot initiate an maintain a conversation with both adults and peers.  He also has issues with joining in ongoing play.
4 - The suggested that we be prepared to list 3 -5 core deficits that concerned us for Jake.
5 - When we are discussing concerns with something such as reading comprehension that we list out specifics such as 1 - when he is being read to, when he reads orally, when he reads silently.
6- We discusses our concerns about Jake's problem solving across school work and social activities.
7 - Nancy suggested that I push for no less than 8 goals.  Jake must have social goals as part of his IEP because difficulty social abilities are a core deficit of autism.
8 - Nancy also suggested that I NOT include my concerns with Jake's handwriting because he is actively working on this at ACI and we wanted to stay big picture with his goals.
9 - For each goal insist that the measurement be either data collection or permanent work product - NOT observation.  This was a BIG one.
10 - insist that goals be written to ensure that data collection is happening across the school day to include lunch, recess, art, music, etc - not just in the classroom.
***As an example here is a goal that I suggested at his IEP meeting.  The wide eyed stares and frantic scribbling that followed would lead me to believe that this does not often happen.
- "Jake will independently initiate 4 part conversations within a 1 hour data collection period, across the school day with multiple peers on 4 out of 5 consecutive data collection days."
11- Do not say "best" when talking about what I want for Jake.  They are not required to do what is "best" they are required to do what is in Jake's "interest".
12 - Overall goals need to say "independent" not "with prompts".
13 - They suggested that he should have no less than 3 goals for social skills.
    - Initiate conversation with multiple peers across the school day utilizing appropriate body language, intonation, eye contact, etc
     - Maintain the conversation
     - Modify his behavior/speech based on verbal and nonverbal peer input

Going into the meeting with this information gave me a sense of confidence in what I was trying to accomplish.  First of all I have to say every IEP meeting I've ever been in I'm always impressed with the caliber of professionals that are assembled.  And they fact that they all have Jake's success as their goal.  The meeting could not have gone better. The team was so receptive to my input and my concerns.  Going in the IEP draft that was proposed had 2 goals.  After my input we came out with 6 goals.  Still a bit short of what Nancy wanted me to shoot for but obviously still a big win.  As a result of the increased goals Jake went from 2 to 4 Special Ed sessions a week and 1 to 2 speech therapy sessions a week.  Additionally Jake will receive inclusion special ed which means the special ed teacher will come to the classroom during math and work with him in his own environment.   For the first time in 4 years I feel confident that we have an IEP that is actively doing everything possible to ensure Jake succeeds.

*There is a definite flip side to all of that which is how AMAZING it is to be surrounded by intelligent professionals who have all been testing and assessing your child and who love him and want the very best for him, as you do.  But it didn't flow with this blog post so I put it here at the end.  Every single time I had to go to a meeting there was always laughter amid the tears as we shared stories about how precious Jake is and the many ways he steals everyone's hearts.


Red said...

Can I just say how proud I am of you? I am so thrilled you are happy with this latest meeting. Praying more success is to come!

Richard Osman said...

Tell Jake that he is very "specially needed" by me and his Honey. I am so grateful that Jake is getting the kind of attention that you and Ryan are giving him, with help from the therapists at Autism Concepts and the folks at his school at Ft. Leavenworth. Keep fighting the good fight for him. And thanks for sharing all this in detail. I know it will help other parents who have kids with similar issues. And it helps me understand more about what is going on with Jake, who will always be my #1 grandchild.