If Not Me, Then Who?

Picking up Nico after school is something new for me. He took the bus home his Kinder year and all last year he was learning from home, so I had no idea what I was getting myself into this year. He is dismissed at 3pm and; yet, it is a parenting battle of wills to be one of the first in the pick-up line every single day. I had no clue how serious a commitment this was, but I was late one day and learned very quickly. It is no picnic being stuck out on the busy road as annoyed drivers honk and swerve around you because you’re sitting idle and blocking a perfectly good driving lane. So, I now arrive an hour early each afternoon on a quest to secure that ever coveted spot at the beginning of the line. I repeat, one hour early…

I really just aim to be the first in line because I know how hard my Nico works in school and how exhausted his brain and body must be by the end of the day.

Nico loves school and is ecstatic to go every single day. This makes my daily stress, reserved just for him, a little less consuming, but I’m finding that the challenges I’m facing with Nico’s schooling this year are lingering below the surface. The ones that could go unnoticed and unchecked if I wasn’t as clued in to what his IEP dictates.

An Individualized Educational Plan (IEP) is a legal document that includes the disability under which a child qualifies for special education services, the services the IEP team has determined the school will provide, yearly goals and objectives, and any accommodations that must be made to assist the child’s learning.

I had a wealth of experience with IEPs, but as a teacher. I was the one on the other side of the table promising to provide someone’s child everything he or she deserved and ensuring the parents that the IEP was going to be followed.

Now that I’m the parent of a child with an IEP, I am finding that my knowledge of and experience with IEPs may be a bit polarizing. On one hand, I know what to look for and how to advocate for my son, but on the other hand, all the insight and advocacy become overwhelming and can strain school-parent relationships.

In preparation for the start of this new year, I knew I needed a meeting with Nico’s whole teacher team to level set and provide as much background on Nico as possible. I started asking for one in July. He had been in a virtual school environment for a year and a half and the Special Ed. teacher team he had in Kindergarten was no longer at his school. There would be a lot of change and many new faces. A meeting was a must. I drafted up my annual “Intro to Nico” Welcome Letter and passed it out at Meet the Teacher Night. And, I thanked the office staff and administration in advance (with cookies just to sweeten the sentiment a bit more) for the occasional visits to the office Nico may have this year.

I did my part. I wanted the school to know I was in this with them. If I expect the world of them when it comes to my son, I am right there beside them with whatever they need.

Supporting a special needs child in a mainstream school, who is learning in an inclusive classroom, which is providing him the Least Restrictive Environment is no small feat. It’s a round the clock job and guess what? So is parenting that child, so when everyone is not on the same page challenges can creep in.

That meeting I asked for with Nico’s team before school started never happened though.

I was asking for it so that I could arm all of his teachers with as much information as possible regarding my son. IEPs are not always read by every teacher. Plus, no IEP will ever replace the sound advice of a mom. And as a result of no face time with the team, Nico’s first week was plagued with a series of unfortunate events that could have totally been avoided if my meeting request was fulfilled.

But then I realized that unless I continued to advocate for this meeting, I would be just as responsible for more challenges to arise.

I am fully aware that Nico is not the only student with autism in his school. There are teachers in his building who may have very little to no experience with teaching students with autism. The school is short-staffed. We’re still in the midst of a pandemic. There are a hundred and one reasons that could cause Nico to fall through the cracks if I’m not advocating for him. If I’m not doing my part to make Nico’s team aware of his needs and what will truly help him (and them) succeed.

The meeting was my first step in being a voice for my son. If I didn’t advocate for him, who would?

I have seen way too many children and young adults struggle in my teaching career because they didn’t have someone champion for them at the table opposite me. It takes patience, time, steadfast commitment, and an unconditional willingness to stay attuned to all aspects of your child’s special needs. I knew some of my students’ parents just didn’t have it in them, whether it be because they weren’t sure how to best support their child or because they just thought it was too much work.

But, this is what it means to be a special needs parent. Advocating for your child and building positive relationships with those who need to be the advocate in your absence.

So did a meeting finally commence? It certainly did. Was it now more of a reactive measure than a proactive measure? Unfortunately, yes. But, did his team and the administration leave with a completely different outlook on how to work with my son? Absolutely!

That one hour created the synergy I was hoping for. It uncovered so many inquiries his teachers had steadily been gathering during that inaugural week with Nico. I was able to provide them tips and tricks, behaviors to look out for, ways to help him manage his emotions, and, most importantly, what makes Nico—this happy, affectionate, fun-loving kid— who he is. The meeting also gave me insight into the Collaborative Classroom model his general and special education teachers were utilizing. Plus, I learned how comfortable they were with his IEP and if they felt equipped to help him reach his goals and objectives.

Now, did they leave the meeting and beg the administration to never talk to me again? Ha! Maybe, but I hope not because they are a great bunch of teachers. They sat and listened intently, empathized with me, asked thoughtful questions, and never once made it seem like my concerns were not valid.

I know it’s tough to deal with parents like me when a teacher’s job is demanding enough as it is. I get it, I was one. But, with that meeting I hope they learned more about me, Nico’s mom, and what I will do to support THEM. What I will do to ensure they have a successful year because if they aren’t feeling supported, my son won’t get the support he needs, and all of my advocacy will have been in vain.

Bottom line…our children have rights and, by law, their individualized educational needs must be met. There are numerous resources that can help you if this is foreign terrain and it seems too daunting to tackle alone. You can even hire a special education advocate or attorney who is well-versed when it comes to the Individuals with Disabilities Education Act (IDEA) to be your voice for your child when preparing the IEP.

Here are some valuable websites that will help you stand up for your child in the best and most informed way possible:

• Individualized Education Programs
• 504 Education Plans
• Special Education: Getting Help for Your Child
• Your Child’s Rights: 6 Principles of IDEA
• Resolving Special Ed Disputes
• Special Education in Collaborative Classrooms
• Inclusion in Special Education Classes

I know that I will be advocating for Nico the rest of my life in some form or fashion. That’s what tends to keep me up at night. Because if it’s not me, then who? I know it just isn’t reasonable to hope that I live forever, but if I knew it was a possibility maybe I wouldn’t feel so pressed for time to make sure I got Nico to a place where he could advocate for himself.

I think that’s why it stings every time I hear parents commend special needs parents for their hard work and advocacy; yet, neglect to ask the million dollar question which is: how can I help my child better connect with yours?To truly admire my advocacy is to emulate it. Learn from it and pass it on so that incredible kids like Nico don’t continue to be left out, stared at, whispered about in corners, and not given a chance to build authentic friendships with others. I would jump at the chance to help kids who I know are curious and unsure about my son better connect with him.

I’m thankful Nico is back at school. I can already tell that school is his happy place. I have to believe that that is because he feels like he belongs. My goal as his mother is to ensure that his sense of belonging continues to thrive and he continues to grow academically and social-emotionally with the help of every educational rockstar that works with him.

Because…I am reminded every single time Nico reads his all-time favorite book to me that: