Friday, November 2, 2018

An IEP through the tears of mom

It’s that time of year again, the leaves are starting to fall and the IEP’s are in full swing.

I’ve been going to IEP meetings since Parker was 3, they are part of our lives. For 16 years we have been sitting in meetings with anywhere from 4 – 24 people discussing the strengths and weaknesses of my son. While the meetings are easier to attend and I am no longer fighting for services or accommodations, there is one thing that still happens every time I walk in to the meeting, I cry. Every single time.

Me. The person who has not only attended 16 years of IEP’s for my own child but has also served as an advocate attending over 30 IEP meetings in 5 states in person and by video.

Me. The voice of reason, persistence, knowledge, and expertise for each meeting I have attended as a parent and as an advocate.

Me. The person with a plan going in on what is needed, how we will accomplish it and what I want to walk out with in writing in my hand.

Me. The person who can recite pages from the Wright’s Law books, show cases of examples, and is equally as qualified to write the IEP as anyone at that table.

Me… the person who gave birth to the amazing young man we are discussing.

I cry.

Never at anyone else’s IEP meetings, I oddly look forward to those – I like the reminder now and then that I know what I am talking about, the laws, and how to help schools provide the most appropriate educational experience for the student. I love building partnerships between parents and schools and helping both sides see the bigger picture through a different view. I love to see teamwork and success where there was not before. In those meetings I am professional Holly. Strong, Educated, Ready.

Parker’s IEP’s are different. I am mom. I am still professional, well mostly. I am still strong, educated and ready – never do I walk in unprepared. But, I am his mom. He is my first born and holds a connection to me deeper than any emotion I could imagine. I am his voice. I am not only the person with the machete cutting down a new path but also the person mixing and pouring the concrete so others can walk on it once it has dried in too in many cases – because I am his mom and this is what he deserves.

You would think though, after 16 years of these meetings, that by now, I would be fine – but I am not.
Even more confusing to the people around the table is that I know what I am walking into and even better… I am walking into a team who is on the same page as me. There is no disagreement on the next steps or most appropriate services. Just a solid team of people who work with him now and those ready to step in and be there for his future.  *I have always walked into a team who was wanting the best for him, we just didn’t always see eye to eye at the start of the meetings on the middle ground but, in the end, we always came together.

Here is the thing. Every minute of our lives, we live in a bit of a bubble. The Parker bubble. This is just what our lives are – while our lives are different than most, it is not different for us. It is just life. It is a world where people see the best in Parker and encourage him through his moments of challenge. It is a world filled with laughter, routine, and… well, a lot of gold fish crackers. Most of all, it is just filled with unconditional, deep to your soul, love.

In that world, while it is filled with the realities of his disability, it’s not looked at in the way it is in an IEP meeting. That is a reality that sucks the wind right from your sails. I know how far he has come and what he has accomplished, what I don’t think about except for during these meetings are the actual levels of function. Partially because they hold as much weight in our life as a grain of salt and partially because not thinking about it prevents me from holding him back and not pushing him more.

So, today, I walked into the IEP meeting after already dropping off 5 dozen cupcakes for those attending meetings today (because, seriously, you need something special on these days – both parents and teachers) ready. I was in a great mood, I was well rested, I was prepared for the plan for the next year. I walked in, we did introductions, a bit of small talk and then turned it over to the teacher to begin.

The meetings always begin the same, listing out Parker’s strengths. If your IEP meeting does not start like this, you need to fix that. We started this very early on, along with a picture of Parker on the table as a reminder of who we were talking about and why we were there. This is always a great way to start the meeting and I’m good through this – who doesn’t love to hear the great things about their child?!? Then we moved on to Parker’s present level of academic achievement and before she could even start, the tears began to fall and there was nothing I could do to stop them. This is the reality I only look at during these meetings.

On the MobyMax Math assessment, Parker earned a 1.3 grade level. He can identify his coins and with a manipulative add 2 numbers together….given X he can do Y with __% accuracy…” the words trail on as my heart cheers the 1.3 grade level – we worked hard for that.

On a recent RAPS360 reading assessment Parker placed a the 2nd grade level in phonic skills and listening vocabulary. He did not pass the visual scanning proficiency….” More tears as my mind retains 2nd grade and “did not pass”.

“….using MobyMax (aligned with Common Core Standards) Parker placed at a .2 grade level in reading assessment and language arts….” More tears as my mind is trying to figure out what exactly a .2 grade level is.

“Parker can read 181 sight words from levels 1 & 2 of the Edmark Reading Program and can read and demonstrate a good comprehension of 75 survival signs and 84 fast food words for a total 159 functional words…” More tears as I grin knowing there is only 1 thing on any fast food menu Parker will eat. I always find this amusing but also useful and am glad he can do it and they were sure he learned it, maybe one day he will broaden his horizons and try some of it.

His PE teacher talked about how happy Parker is for PE each day and that he has loved the section on basketball and that bowling starts next week. PE is Parker’s favorite subject 😊

We continue onto Parker’s present levels of functional performance where I learn he can clean a bathroom or kitchen sink with 33% accuracy – something I would be happy to see him do at home. We talked a lot about his current job through the school in the community. Parker works at Advanced Rehab & Sports Medicine 5 days a week, the last 2 class periods of the day. He has a job coach with him, Amanda, who he really enjoys – and is testing as she mentioned in her review with the teachers that he will sometimes ask her to do things for him. *Laughing* Thankfully she is a wise lady and does not fall prey to his handsomeness and blue eyes and makes him do it himself – because he can and should! She is a good fit with Parker.

His teacher read his work evaluation which was great. We talked about how there are so many more jobs Parker can learn at this one place, surrounded by people who support him. We talked about how places like this can be life long as he can learn his routine and be prompted by the small staff to learn new jobs and stay on task because Parker can’t have a job coach his entire life but he can have amazing co-workers. Right now, he has both which is a pretty awesome glimpse into what can be.

Here is where the tears mostly stop.

Parker LOVES his job. He loves that it is sports related. He loves the people he works with. He loves the work that he does. Because of this job, HE has changed his mind about his future. He no longer wants to work at HyVee (our grocery store) – the job we picked for him because we thought he would like it, he wants to work here. Forever. And I pray that we can make that happen for him. Parker loves working with Jason and the team in Canton.

This is huge in our world. Parker decided. We didn’t. His disability didn’t. He decided. This is a job that pulls in things he can do successfully, teaches him new skills, keeps him interacting with people of all ages and where talking sports is a good thing.

We wrapped up the meeting by reviewing the new goals for Parker, discussing the roles different agencies can play in Parker’s future and about his long term housing goals. It was, as most are, a very good meeting.

As we were about to say goodbye, I could feel the tears coming back. A bit of relief. A bit of anxiety. A bit of fear of the future. I let them know pretty much what I shared with you, it’s hard to leave my Parker bubble for this meeting and to hear that my 19 year old functions so low according to tests. And, while we celebrate the levels that he is functioning at – because we all worked our tails off to get to here – it is a reality check we don’t often look at. A reminder that through all the work I have done over the years, all of the battles we have faced, at the end of the day I am not just human, I am also his mom.

We don’t see Parker for someone who only has a good comprehension of 159 words. Or that has mastered 181 words through Edmark. Or that does math at a first grade level. Or the .2 grade… whatever that is. We see him for Parker. For the young man who is kind, funny, hardworking, thoughtful, who wants other around him to be happy, who keeps tabs on his friends and loves his sports. We see his willingness to learn, his need for routine and his determination. We see those amazing blue eyes, that beautiful smile and feel those squeezy hugs. We protect his innocence and roll our eyes at his very typical 19 year old vocabulary. We see Parker. We see his abilities. We see his strengths. We acknowledge his weaknesses and accept and challenge them. We see Parker.

Here is the best part of it – this is what everyone on his team sees, too.

That’s a pretty good reason to tear up a bit as well. To know he is so well loved by everyone in his life – at home, at school, at work and in our community. Sometimes those tears are tears of thankfulness that we have reached this point and tears of hope that he never loses that.

To be loved and to belong, that’s a goal we never wrote out for him but certainly one that has been mastered.

My awesome friend, Paula Fasciano, shared this image the other day and I simply love it.
I am happy to say that not only does our entire team expect progress, we see it. 

**Side note – I just want to give a huge shout out to all of the businesses in our community who take part in the work program for students with disabilities and who hire adults with disabilities in our community. You are awesome and I truly appreciate and thank you for making these opportunities possible for our loved ones.**

**Side note part 2 – also a huge shout out to Parker’s team who is continually looking for the job that is the perfect fit for him and for his peers. It often takes thinking outside of the box to find that perfect fit and I love that you are always thinking as you are out in our community. You are also appreciated and making a huge difference. Thank you!**

***Side note part 3 – to every parent who has sat through an IEP (lol, like there is ever just one) you are amazing. Keep showing up. Keep participating. Keep building that relationship with your team – even when it’s hard and you don’t agree. Find that common ground. You are your child’s best advocate, do not forget that. You are amazing. I am proud of you. And, if you cry, it’s totally fine that your human side shows through your superhero cape once and awhile, too.**

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