Tuesday, November 24, 2015

The Kindness of Strangers Who Became My Friends

I met this amazing autism family in 2013 and now I'm sort of like their stalker. I follow the lives of this family on Facebook, we email intermittently and see each other even less, and I share their story at any chance I get. Connecting with other families that live with autism is truly a gift, and I cherish my new found friendships within the autism community. This amazing autism family, though? They gave me light when my life was shadowed in darkness.

The way I met this family actually was pretty stalkerish. I saw the Dad at a running expo and noticed an autism logo on his sweatshirt...then I followed him. I don't usually follow random people, by the way, but in the moment I felt totally compelled to do so. I caught up to him quickly and asked him about his sweatshirt; he kindly told me what it was from and then I told him why I was asking.

See, my son had been diagnosed with Autism Spectrum Disorder the previous month, and though the diagnosis was welcome after so many years of struggle, I was leaving the honeymoon period and reality was setting in - you know, the what the hell does this really mean reality. Once I told the Dad that my son has ASD, he stopped his wife and two adult twin boys who are both severely autistic and introduced them. They were at the running expo to pick up the boys numbers because they were running the marathon.

Wait, what?!

I thought: I'm running the marathon too. And, marathons are hard. HOW are your boys, with severe autism, going to run a marathon?

I've been running my whole life and I am not naïve to scenarios in which the most unlikely runners complete marathons, but at the time I was thinking about my son and how he bangs his head so hard that his nose bleeds and I was trying to make the leap from that to where these incredible boys can run a full marathon. In the briefest of moments, the Mom and Dad told me how they figured out the boys liked to run when they were in their teens, and now the family runs together (with guides and the occasional behavioral therapist, which is SO neat) and the boys LOVE it.

And then I started to cry.

Let me be clear that my son does not have severe autism and I will never know the emotional and physical struggles of this family, and I was aware of that then. What I didn't know, and still don't, is what my son's talent is, where his passion lies...at the time I couldn't even get him to tell me he was hungry, and so I was in awe (and still am) of the parents that stood before me that had figured this out for their boys and then overcame obstacles to make it possible for them.

They showed me light.

In that moment I knew that until I could find my son's passion (and probably even after I do)  I would use my own legs for a greater purpose, and I have - running at least one race a year to raise money for autism. Without a doubt, this has been life changing for me. If getting my son's ASD diagnosis cracked open a door for me, this family kicked it  open the rest of the way and put a door stop in, because you have to trust me when I tell you that there is no way you could meet this family and not be amazed by them. Hope...I felt such hope after talking to them.

I checked in with the family a few months after our initial meeting, and the Mom asked me how I was doing. I answered her by saying that I still had moments when I felt like I couldn't believe that I had a child with autism. How she replied to me was unexpected: "Me too", she said, "I still can't believe I have children with autism". And, as if their family hadn't done enough for me already, what she gave me at that moment was akin to a Get Out of Jail Free card...permission to not always be o.k. with the path in life we are given, but to persevere anyway. This is still incredibly enlightening to me and I will forever be grateful for her raw honesty.

So, yes, I stalk this amazing family, but do so now as their friend. They inspire me, they give me hope, they let me know that my love for my son will be boundless. They were my first connection to the autism community and embody the strength and compassion that I've come to rely on from my friends who walk in similar shoes.

As I reflect on what I am thankful for this time of year, it includes my gratitude for this family who opened their lives to a stranger one day and showed me how to walk run my path without shame or sorrow, but rather with conviction of purpose. This is a tribute, a thank you, long past due but no less meaningful. So, thank you.

Keep your fears to yourself, but share your courage with others.
-Robert Louis Stevenson

Wednesday, November 11, 2015

A World All his Own

When the house is quite and Evan's time is his own, this his how you might find him. I know that he needs this time in order to manage the world's expectations, but it hurts just a little because in these moments he is unreachable.

The cat, by the way, can often be found close to Evan and will follow him from room to room.

Tuesday, November 10, 2015

Free and Appropriate Public Education

Today was our meeting with the school to address the outside testing we had done on Evan over the last few months. Overall, I was actually impressed with the time the school had taken to review the reports that we supplied and when we sat down for the meeting the school had copies of a new proposed IEP with changes that they were making based on the reports. They had taken the time to print all the pages of recommendations in our reports and color coded each segment (Yellow for things that were already in his IEP, Pink for changes that they agreed to make to his existing IEP, and Blue for things that they didn't see a need for currently). This system made our meeting flow nicely and really helped us focus in on the things that the two camps (our side vs. the school side) disagreed on.

There were several things in blue that our team was able to talk through and put in context for the school that was ultimately added to Evan's IEP. In addition, there were several things that came out of group brainstorming that we were able to add as well.

While there are a couple of unresolved issues still left on the table, the bulk of the meeting was positive. Evan's test results were pretty clear and the school really didn't have any choice but to increase his services in several areas. Based on the proposed additional services, it looks like he will formally be moved from a full inclusion setting to a partial inclusion setting, which means that he will spend greater than 21% of his time, but not more than 60% of his time, outside the general education classroom. This is a necessary step on the road to the possibility of having him in a substantially separate classroom and one we welcome. The idea of putting him into a substantially separate class was one that was spoken openly about at the table; not one person disagreed that we may be moving in that direction, which I take as a positive sign that the school is aware of his needs and is considering how they will service his needs in the future.  Or, they just opened the door for me to prove that they need to place him out of district.

I just want to back up for a moment and consider how we got here. Evan's three year review at school is coming up in the spring of 2016; a three year review is required for all students on an IEP and is when the providers retest the areas of need as outlined by the IEP. The school providers all meet and determine what testing is necessary, based on age, need, etc. The school then sends a letter home asking permission to do the testing. How do you know if the testing the school recommends is appropriate? Well, you research it, ask other parents, hire an advocate to help you through the process, or you might just cross your fingers and hope that the school knows best.

The medical model of testing is different. Neuropsychological testing is recommended for Evan every two years and speech testing every year. Because I have my own outside providers, I opted to do most of Evan's testing privately and ahead of the school's three year timeline. There are still some educational testing that the school may recommend, but the most critical tests for Evan now were all covered by his clinicians. In addition, we paid an educational expert to observe Evan across many settings in school; an educational expert is a person with an educational background, but also schooled in educational law and best practice and has an understanding of disorders that impact a child's access to learning. If a disagreement with a school goes to mediation, an educational expert is necessary to prove your case.

You can imagine that a young child can change significantly over the course of 3 years. So, too, does the understanding of learning, language, and executive functioning disorders that cannot be tested on a 4 year old, but can be tested on a 6 year old.

Consider next that there is this requirement under Section 504 of the Rehabilitation Act of 1973 called Free and Appropriate Public Education. FAPE requires that all qualified persons with disabilities within the jurisdiction of a school district are entitled to a free appropriate education (you can read more about that here: http://www2.ed.gov/about/offices/list/ocr/docs/edlite-FAPE504.html).

Turns out that proving what is appropriate is actually quite expensive and not at all free.

Our meeting today cost us probably around $5000.00. Significant changes were made to Evan's IEP, which the school agreed was appropriate, but only because we paid to have the testing done and our team at the table. Otherwise, the school would have done some testing next March, discussed the findings in April, given us a new IEP to sign in May, and implemented the changes right before the end of the school year.

This fact gives me significant pause - that left to the schools' devices, Evan would have been left for 5 months in a setting that was NOT appropriate and this is a kid with a diagnosed neurological disorder. Kids with autism in MA get some of the most comprehensive educational services available because there is a law that says they must and yet here we are, in 2015, having to push this hard. And what about the other kids who aren't getting private testing, whose parents aren't advocating for them, who have more complex and even harder to understand diagnosis than autism?

For the moment, though, I'm going to let this go and celebrate the advancements that we made with the school team today. I'm feeling good and like we are moving in the right direction. I hope, as soon as the new changes take place, that Evan will start to feel good too.

A little side note to those in the SpEd trenches with me...fight on, my friends, fight on...

Friday, November 6, 2015

Some (Not So) Easy Reading

 Here is my homework in preparation for an IEP meeting next week to review all of our outside medical reports. They include a 14 page neuropsych evaluation, a 19 page speech evaluation, and a 21 page educational report. I've also found a 57 page thesis on the pros and cons of inclusion for children with ASD that I plan to highlight it to the hilt.

There are a lot of positive things written in all these reports, but when I sit at an IEP meeting, I have to be the "glass is half empty" type of gal. Evan has made great progress, but where is he in relation to his peers? How exactly, are they measuring his ability to access the curriculum? Etc, etc. Last year Evan completed a math assessment in 5 days. Great! But, it took his peers 15-20 minutes. This was considered him accessing the curriculum. I have a problem with that.

There are many, many reasons that I am leery of his current public school placement, some I've blogged about, others that I haven't. I do not believe that inclusion is the best model for all students, and while I am thankful for the work my Special Education forefathers did on behalf of disabled students, the "one size fits all model" that, for the most part, public education adopts, leaves a number of students with significant disadvantages. I believe our public school system is in many ways broken, and while I'd like to see it changed for the greater good, my priority is to make sure that Evan does not fail.

My team will be presenting a significant number of language, learning, and social recommendations. We will be setting the groundwork for Evan to be moved to a substantially separate classroom (that currently doesn't exist in our town) or to be placed out of district by 3rd grade. This will likely be a long, hard, expensive battle, but one I am 100% committed to. Evan is struggling in class, crying regularly, asking for a different life, and wants a "new school" (we do not talk about this in front of him, so this is not language he is getting from us).

One of the hardest struggles of an invisible disability is that one can appear "normal". Many people play this to their advantage and try their best to fit in, or to have their children fit in. Not surprisingly, I'm sure, this is not our approach with Evan. Evan might look "normal", but let me give you just one piece of information from the pages and pages of reports we have: his ability to retell a story without the use of visual aids is at the age of 2-3 year old. At what grade level do you think this will finally catch up to him?

Here is something to strengthen my argument...in the conclusion of The Pros and Cons of Inclusion for Children with Autism Spectrum Disorders: What Constitutes the Least Restrictive Environment? by Lindsay J. Vander Wiele, she writes:

Never should happiness or appropriateness be sacrificed under the guise of "normality".

Amen, Sister, amen...

Stay tuned for my therapy disguised as a blog after our next week's meeting.