IEP Planning- Parental Input

Tomorrow is Nate's IEP meeting.  My heart is in my throat and I don't want to go.  I don't want to confront his lack of progress yet again.  But I am also in a panic, and at this point want to basically beg for more help.  He is not a behavioral problem- and this is an issue, as it was for Jack.  Behavioral issues get attention from the schools because they become safety concerns.  My kids' issues are just as important, but they don't "disturb" others, which is what makes this so challenging.  That being said, no one can look at Nate's various assessments and deny that what we are doing- it's not working.  And believe me, we are doing.  Usually when I provide parental input for an IEP meeting it is very straight forward, here is what we have, here is what my son is struggling with, this is what I think he needs.  I am not doing that this time.  This time I wrote a letter based on my feelings of desperation.  I don't know that it will do any good, but I could NOT sit down at this point in time and express the same concerns I have been expressing for over 2 years.  Because they have not changed, they have not improved.  It's absolutely terrifying for a parent, so I chose to express that.  I don't think there is much more they can do for Nate, so listing specifics is not going to help.  They know, they already listed those same concerns in their portion of the IEP planning documents.  Here is what I wrote:

Parental Input for Nathan Fury’s IEP:

Our concerns for Nathan remain numerous, and our degree of concern has increased substantially over this past year due to the lack of any discernable progress.  Nathan was recently assessed at NIH as part of the study he is currently participating in and it comes as no surprise to us that receptive and expressive speech remain at the same level as they were in May of 2013, which is also the same level he tested at in November of 2012 and frankly the same as September of 2011.  It is clear that despite all that is being done for Nathan, his current interventions are inadequate.  Not just in school but in general.  For every word he gains, he loses another, for each skill he learns, he loses others. 

Nate’s current private interventions:

Private OT twice a week

Participation in the Cisco Center special needs preschool programs 4 afternoons a week, where he also receives some speech services

Medical:  Nathan began Aricept with NIH approximately 10 days ago, he remains on a gluten/casein free diet, a probiotic, antifungal treatments, fish oil, and mitochondrial cocktail,

Nathan is currently on a waiting list for Cypress Creek Therapy Speech Services with the intent to take him as frequently as possible, up to 3x/week if recommended.  Our private insurance has only recently lifted the extremely tight limits on the number of therapy sessions allotted- they have relabeled his therapy as “habilitative services”.

This is all in addition to the services he is receiving at Benfield, for which we remain extremely grateful.  That being said, Nathan has been receiving early intervention services for over 2 years at this point with little to no progress, despite the relatively intensive nature of the program.  He has attended extended school year services, and when not in that program attended Cisco Center full time over the summer.

I think that we can all agree on Nathan’s main barrier to learning.  His sensory issues take over in most situations, he is unable to concentrate or attend to activities due to these needs.  I have tried the following:  Wilberger brushing protocol.  Chinese massage (yep), weighted blankets, sensory schedules including multiple swings we have mounted in our garage, weighted vest, fidgets, and chewies.  We are unable to engage Nathan in play 98% of the time in the home setting- when we do, his play remains sensory based, ie, he will play with Thomas trains but after a few minutes he ends up dangling the longest string of cars he can put together that can withstand gravity in front of his face.  He can string literally 20 monkeys in a barrel together, but once again, he dangles them in front of his face for visual stimulation. 

At this point, my question to the team is what else can be done for my sweet boy?  Our family has faced these challenges in the past with our older son, although they were not nearly as severe.  We are at a loss.  Are there other, more intensive, programs available to Nathan?  Could he benefit from a different setting at this point?  Are there further services available to Nathan at Benfield- individual speech, further OT intervention?

As his parents, his lack of progress is nothing short of devastating and it has left us feeling that we are missing some huge piece of the puzzle that is Nathan.  We are open to any and all interventions at this point.  I have also attached his recent assessment done at NIH for review.