Evan and IEP updates

Whew.  I survived!  I so need this shirt!  I was sooooooo nervous going into yesterday's meeting.... praying I would be Evan's best advocate, praying I wouldn't p!ss anyone off, and praying I wouldn't break down and cry!  I think I was able to achieve all three. :)

All the IEP meetings I have attended in the past are generally an hour long.  Well this one was TWO HOURS long!!! A couple people had to leave early since they did not anticipate the meeting being this long, but we could not end the meeting until all was finalized.  I was armed with my most favorite OT of all time who has been instrumental in both Evan and Lina receiving the proper placements/therapies.  She sat by my side and helped me immensely!  LOVE YOU!!!

While preparing for my meeting and actually right after I made my last blog post, I came to the realization that Evan most likely has apraxia of speech.  Everywhere I read, it stated that children with apraxia need one on one therapy 3-5 times a week.  So far he has been receiving one on one speech therapy once a week.  Not adequate.  I figured I would have a fight, but my intent was to bump him up to 4 times a week total- once at his private preschool as he's been doing, and then each of the three days he attends the special ed preschool.  I also have signed him up to begin private speech therapy, but the school system doesn't need to know about that. ;)

While we all agreed where Evan is, there was disagreement on how much speech services he should receive.  Actually, it came down to the speech therapist at the elementary school where his special ed preschool is... feeling overwhelmed and unable to give him the time he needs.  Well sorry, but that's not my problem.  She was only going to pull him once a week for one on one services and then meet with him in a "small group" which is essentially the entire preschool class since it consists of about 6 kids, and clearly that has not been effective for Evan.  He would continue seeing his other ST who meets at Evan's private preschool for one on one therapy once a week also.  Something's gotta give.

I insisted he needed more, and we finally compromised at twice a week for one on one speech from the special ed class, once a week group speech, and once a week one on one at the private preschool.  I fully understood her busy schedule for this year and agreed that it didn't need to begin until next school year.  This year is about over.  I did request for his speech services to increase for the summer ESY program and am still waiting to hear back about that.

I am super excited about the private speech therapy- the therapist he will be seeing has other children with DS on her caseload and is well versed on apraxia also.  I am extremely hopeful between the private therapy and the major increase in services for next year that we will be hearing more from Evan very soon!

And the little stinker- he must know how much I have been stressing about his speech.... and just yesterday evening was having a huge speech explosion!  I put his little "Meet the Letters" video on TV while I was cleaning up from dinner, and I could hear him saying some of the letter names (not just sounds!) clear as day!  He was able to say B, D, E, and L- and I think there may have been one or two more.  This morning as I was dropping him off at school, I kissed him and said "goodbye" and he replied, "buh" :)  When he got home we went to wash his hands... I said, "all done" and he said "duh". He has always been Mr. Gross Motor man and too busy running around to stop and try to talk.... so I'm hoping he is finally becoming more interested in saying words.

As for his signs- here are a few videos of him signing to his Signing Time songs!  These are just the audio CD's- he is signing from memory and not seeing anything on the television. :) Disclaimer: he usually signs more words with the songs but was particularly wormy and running around.... oh yea, that's typical Evan! Don't mind me scolding Justin in the beginning to quit distracting while I'm trying to film Evan. ;)And please please forgive my singing! ACK!

This one is blurry in the beginning- my phone didn't want to focus for some reason... may have something to do with the moving target ;)
 

Bracing for Impact

This is how I feel approaching Evan's IEP meeting next Wednesday.  WARNING: I'm about to get very real.

Yes, Evan is the light of my life and I love sharing how absolutely awesome and amazing he is in every way- and he is!!  He is my sunshine.... we have a bond so strong... SO SO strong.  But somehow I've let him down.  I feel like I have completely failed him as a parent and advocate for his educational needs this past year.  I mentioned in a previous post how his last progress report indicated he was making sufficient progress toward meeting all his IEP goals by August, when in reality he really hasn't gotten close to most of them.  I feel like this past school year was a total waste and he has made very minimal progress.  Can we have a re-do?  I feel like time is precious with him since he will always have some sort of delay.  But my responsibility is to keep him as up to speed as possible so those delays don't fall further and further behind.  My goal has been for him to attend mainstream Pre-K for the 2014-2015 school year.  Is that just a pipe dream now or can we still get there?

I am so nervous coming into this meeting.... How can I express my feelings yet not appear as if I am attacking the school staff?  The people Evan works with on a daily basis are the sweetest people ever.  Yet somehow he seems to have slipped through the cracks.

At 3 1/2 years old, Evan still has no verbal words.  He knows well over 100 signs but very rarely uses them in context.  He can label but will not use them conversationally.  This is my biggest frustration.  He is a SMART little boy, but it's becoming extremely difficult to get those smarts out of him.  I worry how this will impact his education in the next several years since it's so difficult for teachers to understand what he knows and doesn't know.  Do I need to seek out the possibility of another diagnosis such as apraxia of speech or autism? Or is this just my little boy who goes 50 mph at all waking hours and has no time to stop for this communication stuff?  Justin was a late talker- he didn't really start speaking until 2 1/2 years old.... is Evan just following in big brother's footsteps?  Or is this "severe delay" caused by the lack of one-on-one services.... And most importantly, is this ground we can make up next year with proper therapy times?

Currently, Evan has been receiving the bulk of his therapies in the special ed classroom as group therapies.  The only one-on-one services he has been getting individually are speech once a week at his private preschool, and I am thinking he gets pulled for some OT at the special ed preschool.  That's it.  Evan really needs more individualized therapies and this was a huge concern of mine at the beginning of the year as we transitioned from Infants & Toddlers services with therapists who came to the house to work with him one-on one.  And with that transition of me seeing the therapists each time and communicating at each session, to the special ed preschool where I get quarterly progress reports and that's it.... I feel left in the dark.  I thought maybe they were seeing more at school since he was almost always marked as "making sufficient progress to meet IEP goal".... but maybe not so much.  I am anxious to hear what they have to say at this meeting.

Please pray.  Pray that I can get my point across about the lack of communication at school as well as the inaccuracy of Evan's progress reports without being on the attack.  Pray we can reach an agreement for Evan's next steps.  And mostly pray for Evan that he gets the desire to communicate.  I want the world to know how smart my sweet boy is!