Friday, January 24, 2014

Freshman IEP ... and Miss Chevonne

Parker has been in Special Education since he was 3 years old and qualified for services through the school because of his Fragile X diagnosis. 11 years and countless meetings and IEP's later we had our first one at the high school this past week.

For those not familiar with the special education world, an IEP is an Individualized Education Plan.  A plan written by the child's team which includes the parents, therapists, teachers, support staff, special ed coordinator and honestly whoever else gets tossed into the mix.  Parker has always had a very large team... it does take a village. Together we write goals for Parker for every area, along with how to measure them.

IEP meetings are always emotionally draining for me, even when they are good.  It's a combination of many things: The mental process to prepare myself for any unexpected difficulties/disagreements, possibility of educating anyone new on the team of the past 11 years and to hear the reality of Parker's life.  When you have a child with a disability you, or at least I with Parker, never get to hear "Parker's doing exactly what his peers are" instead I get to hear things like how my 14 year old son has the expressive language of a 6 year old (*I'm extremely thankful for his 6 year old language ability*)  and set goals for my almost 6 foot tall 14 year old to meet that is what his peers did in first grade.  While it's reality and I'm very aware of it, it's not the focus of who Parker is day to day for me.

We've always been extremely blessed to have incredible teams for Parker.  While we've went through some rough years and I was forced to learn everything I could regarding Special Education Law to best advocate for my son it wasn't the actual team members I was going up against.  It was a higher authority, budgets, administration, typical parents... sigh.  We've had so many battles... so many battles. But his team... his team has always been the most amazing individuals, dedicated, determined, compassionate and - like me -passionate and full of belief in Parker.  Which means we have also had so many successes... SOOOO many successes!

You would think that by now I would not cry at every meeting - yet, for both Parker and Allison - I do. I just can't help it. I sit in on many IEP's throughout the year for other families, I never cry at them. I am a rather good advocate for both mine and others. I know the law, our rights, Fragile X and my children. Don't get me wrong, I can cry and fight at the same time... I'd just rather not have to do either. When it's your own child  it's a very different experience than advocating for someone else's and no matter how great things are going I constantly have the anxiety of waiting for that other shoe to drop and the bottom to fall out.

The hour before each IEP has been the same for many years. I either bake or pick up some delicious treat for the team to munch on during the meeting (food always makes everyone happy and brings people together plus they do these meetings back to back to back to back... they do deserve something yummy while working) and while I make the short drive to school I listen to Simple Plan's Shut Up very loudly in my mini van (I'm that cool) on repeat until I have found that place deep inside me where my confidence resides.  Then, I confidently step out of my van, gather my treats and start crying as I walk into the building. This week I decided to switch up the music a little as I was most determined not to cry. I went with a Phillip Phillips song to loop (I really like to loop songs) ... Home.  It was amazing... I instantly broke into tears while still in the van - sigh.  Yet I found such comfort in the words - it's hard to explain.  I pulled it together before I walked into the school.

Prior to his meeting many of us stood in the hallway talking eventually we went inside, took our seats and started with introductions. Many, many years ago we set the tone that every meeting would start with something good about Parker.  It's hard to stay positive when the first thing that comes out of someone's mouth is "You're 14 year old functions at the level of a 6 year old..." or "We have had 127 behaviors this week..." meetings need to start on a positive note, even during the most difficult of times. This meeting was no exception each person started with a positive.

We began with Mrs. Pierce, the regular ed art teacher who has Parker for Art 1.  I relax a little as I hear the kind words she has to say about how Parker has surprised and impressed her with how well he has done, how much she enjoys having him in class... she was clearly beaming with pride as she talked of his accomplishments.  I felt relief as I wasn't sure he would like art but was glad to see that she could see in him that he does.  She gave significant credit to Mrs. Wildebour, the para (one on one aide) who is with Parker in art and modifies all of his work, complimenting her ability to modify the work for Parker, involve him and push him to really be his best.  We discussed electives for next year and my heart sank a little knowing that Mrs. Pierce wouldn't be the art teacher unless we repeated Art 1 but took comfort in her confidence that he would like the new teacher.

We continued around the room, the Autism consultant and SLP both talked sharing wonderful stories and updates while making recommendations for the upcoming year.  I, in typical Holly fashion, disagreed with Parker's language evaluations knowing he does not test well and what his strengths have always been.  The offer to repeat them was made but I know it is pointless and do not believe in wasting anyone's time so I declined the offer to retest.

Typically in high school the kids come with to their IEPs to become self advocates.  While, by law, I was fine with Parker's name being on the invitation I was amendment that he would not attend. I had talked it over with his dad and we both agreed, knowing Parker very well, that it would ruin everyone's day and the meeting would be rescheduled without anything accomplished. We documented this and set it for a goal for Parker to one day attend.  We discussed briefly Parker's long term plan... will he continue on with school (high school) until he's 21 or will he leave after graduation and do something else.  The reality is - we have no way to know.  We have no way to know what opportunities will present themselves to Parker over the next few years and what he will want when that day comes.  What we know today is that he will walk with his class at graduation. Beyond that, it's too soon to tell and if you ask Parker right now he will tell you he doesn't want to get a job or move out.  He wants to stay home with his mom ... for now, I'm good with that.(I didn't want to work or leave home at 14 either!)  We were clear that our expectations for Parker is to become as independent as possible.  We want him to make that natural transition of moving out when the time is right into an appropriate setting.  It is important to me that Parker learns how to be ok without depending on me while I am still here and can help with that transition as opposed to after I am gone and he is forced to do it without my support. I won't live forever and need to know he's ok before that time comes.

We continued on with Mrs. Vohland, who serves not only as Parker's teacher for many classes but also as his case manager.  She talked of his strengths and greatly complimented Mrs. Horton, Parker's other para who was also in attendance, for the incredible work she does with Parker each day and for the reason we see such success in Parker. They both shared great strides he has made in every area and we talked at length about the huge improvements in his behavior.  Parker is participating in all of his classes, visiting with friends in the hall, he is - in so many ways a typical freshman just like his friends.  We discussed letting him go off campus with assistance for lunch when the weather warms up and increased his goals both academically and for self-help/personal care/independence.

This meeting was going really exceptionally well.  There was only one person left to talk, Miss Chevonne, our OT.  Chevonne has been Parker's OT since he was in 1st grade.  She has, honestly, seen it all with him over the past several years.  She has become a person of trust for me, someone I know I can go to for true advice - she is a tell it how it is type of woman.  She gets everything about Parker, his humor, his soft spots, his frustration. When discussing why he doesn't like working with clay earlier in the meeting she said, "What you have to understand is it's more than the physical touching of it, it actually hurts him on the inside there is so much of an aversion and anxiety with it." and backed me when I said we would not push this and make him work with clay.  She gets him.  Unfortunately that doesn't mean Parker loves OT.  He's had many amazing OTA's working with him with Chevonne's watch over the years - he put his foot down early, he wasn't having anything to do with it.

His refusal to do OT has led to many things, including it being encouraged more than once (and by many) that I take out of Parker's IEP goals that he will learn to write his name.   He couldn't make a single legible letter, he had a Popsicle "P" (a line with a sloppy circle on the top) that was his "signature".  Parker is incredible on the computer and technology has come so far "He doesn't really need to be able to write his name" ... I've been told by so many.  But, to me... his mom.. he does.  I don't know that I can explain it.  Pride, accomplishment... there is something about being able to write your own name that was important to me and I refused to take it out of his IEP.  I honestly did not care if he could write any other letter of the alphabet, I just wanted him to be able to write "Parker" and made sure it stayed as a goal.

Despite incredible efforts, Parker had not made progress in OT for a very long time.  We all knew that Chevonne and her team had done all they could.  Last year I agreed that Chevonne would work with Parker for the first half of the school year, we would meet in January and then she would step off his team and we would move forward without the OT goals.  Now, if you know me at all, you know I will agree to something like this to end a meeting knowing that I can still fight tooth and nail for it to be kept in so there was that in my back pocket but as we ended 8th grade my heart knew if he hadn't made progress we needed to focus on areas that were more important.  While part of me let go of the hope that he would one day write his name and accept that it might not happen, a little part of me held on tight to the hope he would do it and prove everyone wrong one day.

The only word I can think to describe the first half of Parker's freshman year at Canton High School is transformational (which according to my spell check isn't even a real word which just shows how off the charts awesome this year has been).  He has made the most amazing progress in every aspect of his school day (something I worried greatly about when we lost the Arbaclofen).  I knew he was making progress with OT and Chevonne in October when I received this picture from her...

I've seen pictures like this and replied how nice it was and asked the question I was sure I knew the answer to "was it hand over hand?"  which had been the only way to get legible numbers/letters from Parker up until then.  Her reply "No!!  He did it all on his own!!"  She talked about how much he loved numbers and how motivating this was for him.  I was ... an incredibly proud momma :-)

A couple months later another picture...

and the caption "the best grasp he's done all year, we need to work on the wrist but it only took a small verbal prompt to hold it at the end."  If you are not the mom of a child with a disability, this may not seem like much to you but to me, I knew just how huge this was.

Then, without any warning it happened.  I was writing Parker's letter to Santa with him and said, "Ok, YOU sign it."  I've said this for years, I was waiting for his Parker "P" but then the most amazing thing happened - he just started writing his name.  In complete disbelief I grabbed my phone and said each letter even though he didn't need me to and recorded it.  I know if I hadn't seen it with my own eyes I never would have believed it.  This was my Christmas miracle

at 14 1/2 years old Parker wrote his name, when I wasn't even expecting it.  I still cry when I watch it.  Mrs. Horton was the one who was not at all surprised but beamed with pride when she told me he had been doing almost all of his own writing at school.  She, like all of his teachers and paras really push him.  "This is high school you gotta do it"!

Back to our IEP - Chevonne was the last to give her report, I was prepared for the goodbye.  She lit up (which is typical of her, she is always a ray of sunshine - always!) and began passing around samples of what Parker was doing at the beginning of the year and what he is doing now.  Amazing, tremendous, unbelievable... all words mentioned that didn't come close to describing the progress that was happening.

I had been doing so well, not a single tear had fallen yet during this meeting. I was very proud of myself,  by now I was usually at least on my 8th kleenex but as soon as Chevonne said her first words they came. Tears. Tears of pride.  Tears of accomplishment.  Tears of IEP stress.  Tears.  I couldn't even look at Chevonne.  I played the video of Parker writing his name on that's on my phone for the team members who are not my Facebook friends (shockingly there are still people who I am not FB friends with!) and tried to prepare myself to either agree to let OT services subside or fight to keep them.  I knew no matter how much I wanted to fight, I would follow Chevonne's lead.  I have such tremendous respect for her that at this point in our journey I needed to let her guide me.

I don't recall much of what she said, I focused on the examples she shared, the excitement in her voice and waited.  Then she paused, sat tall, folded her hands together and said, "I know we said that I would work with Parker through the first half of the school year only..."  my heart started to sink ... "I never go back on my recommendations... " it was like time was moving in slow motion, I could hear her words but had tuned out everyone else in the room, it was just Chevonne and I when I looked up and heard her say "I am staying on this team.  I am going to continue to work with Parker.  He has made such significant progress that I never thought I'd see.  Things I was sure were not going to happen, he has done.  I have written new goals for him.  We are going to keep moving along. I am not stopping now."  (Disclaimer: those may not have been her exact words but they are pretty close and what I remember!).

In that moment, this IEP went down as the best ever in the history of Parker's IEPs.

At the direction of Mrs. Martin we took time to acknowledge all the great people who has been a part of Parker's team through the years as it took every single one of them to be a piece of Parker's life to get him to where he is now.  It has taken a team, it will continue to take a team and I'm beyond thrilled that Miss Chevonne is still a part of that team :-)

In a time where the press is filled with school personnel who are doing unspeakable acts to children, it's important we also recognize those who are doing an outstanding job.  Parker has provided many challenges for his team members over the years yet as they got to know him, each one found a new strength in him.  Each one remains a part of his life and follows his journey today.  Each one is extremely important to me and to our family. I am thankful for every single one of them and the role they have played or currently play in his life.  One day, he's going to be a grown up well adjusted independent man and I have an entire village of people to thank for being a part of the journey to make that happen.  They are the people many forget to thank, yet they really are the true unsung heros in the lives of our kids every day.

We still have a long road ahead but I have faith we will continue to be amazed at the progress Parker makes, the lives he touches and the many people who will continue to believe in him.  But for now, I'm going to spend a little more time focusing on today and the amazing teams that have gotten us here and continuing to be thankful for them all and remind everyone to never give up.

1 comment:

  1. All amazing! Thank you so much for sharing this. I can only hope that one day AJ will begin to show his smart :-)