Take It To the Mattresses

Another school year looms around the corner. We just moved from one state to another when school was out in mid-June. School in the old state started the last week of August and ended in mid-June. School in the new state starts the first week of August and ends in mid-May. That leaves my kids, who are moving from a late-starting school to an early-starting school, only 6 glorious weeks of summer instead of 10! And it’s stormed nearly 80% of those 6 weeks! Summers are known to be hard for families with special-needs kids. Routines change and sometimes dissolve. And once they get used to the summer schedule, or lack thereof, school starts again and they’re thrust back into a new routine with new people, maybe even in a new place. For us, it starts in two weeks. New places. New faces. New routine. Meltdowns. IEP meetings. Evaluations. Parental meltdowns.

We’ve been incredibly blessed over the past several years in Sam’s school system in Maryland. He went to an inclusive pre-school class for two years before being mainstreamed into kindergarten. It was a very small school, and he had pull-out services for OT and speech, as well as an in-class aid for the majority of the school day. As he progressed over the past five years, he has graduated from OT and speech, and they just decided to decrease hours with his aid in order to help foster more classroom independence. He still had access to the aid as she was in the classroom for other kids as well, plus the special-ed teacher herself was one of his classroom teachers. And she also pulled him out for a special small-group reading program that he was doing very well in. Things were going very well and looked promising for his 5th grade year.

But then, we moved.

I have never had to fight for any services for Sam. I’ve never had to “take it to the mattresses” and push my parental weight around with school staff or school board officials to make sure he had access to everything he needed to be successful in his school setting. They made it so easy. I felt guilty reading friends’ Facebook posts about the dreaded IEP meeting and the metaphors of going to war. Mine was more like a tea party. (Not the kind from Boston either!) I was never discounted, or made to feel like I didn’t know what I was talking about – you know, as his parent. They answered every question I had with patience, and for any problems that arose, they listened to me and immediately problem-solved with me. They completely understood and didn’t bat an eye when his homework wasn’t done because he couldn’t remember how to do it, had a meltdown because he didn’t understand something, or because he forgot his papers – again. His teachers were amazing. They were so good with Sam.

Now, we’re in a new school in a new state with new rules and new routines, and the size of the school is much larger than that of his old school. There isn’t as much funding and resources for special-ed as there was in one of the best school counties in the state of Maryland where we came from. That’s not to say that they aren’t just as good at their job teaching kids with special-needs in the new school system. I’ve heard wonderful things about the special-needs resources in the school district we live in. But I’m a little worried. Because this state has different rules, a new IEP will have to be written to match this state’s special-needs education standards and how that plays out for my son in the classroom. And that’s not going to happen before school begins. A new evaluation will be done. What if they determine he doesn’t need as much as I think he needs? What if I have to put on my army boots and go to war with the school? What if I need to go above the school’s head to the county’s board of education?

I’m the type of person who will readily fight for justice to be done, and I have done so in front of a state specialty task force, and committees in both the House of Representatives and the State Senate to secure services and more people to get those services for autism treatment. I’ve spent countless hours on the phone being bounced between departments of state Medicaid to figure out how to cover therapy. I called every therapy clinic within 50 miles of our home to find an in-home ABA therapist we could afford and work with in some feasible manner who would actually drive to our house in the middle of nowhere. When it comes to my son, I leave no stone unturned. There isn’t anything I haven’t researched or talked to people about or fought for, even if I lost. And I do not like to lose. I have an attitude like that of the Lorax. If I don’t do something about it, nothing is going to change.

Some of you might be like me and think like the Godfather:

Some of you might be more like Meg Ryan from “You’ve Got Mail”,

As the new school year falls upon us, there are likely many anxieties, frustrations, and hopes that parents of special-needs kids will experience. We may fall into one of two camps. Either we start the year with guns blazing, ready to show that we’re ready to fight before we even know if there’s going to be one, or we may sit back and just let the chips fall where they may and get up only if things get bad enough. But I think that there is a delicate balance we have to find between the two, and I believe the Bible speaks to that balance. II Peter 3:17 says, “You therefore, beloved, knowing this beforehand, take care that you are not carried away with the error of lawless people and lose your own stability”; and Ephesians 5:15, “Look carefully then how you walk, not as unwise but as wise.” When we see an injustice, or feel our children are losing out on rights that are due to them, we may pull the trigger too soon on our temper and react with hostility rather than patience and grace. We can easily get caught up in trying to right a wrong to such an extreme that we end up being wrong in our own right and we accomplish nothing.

We must walk wisely in order to teach our children how to be wise. For those whose children are learning to be more independent and are getting older and more able to become their own advocate, we are their example. If all they see of us is yelling over the phone, or speaking against their teachers or therapists – people we tell them they can trust – we are losing the battle with our kids’ hearts even if we’re gaining ground in insurance coverage. That’s not a trade-off I bet any of us are willing to make. We should be quick to hear, to listen, but slow to anger and slow to speak. That doesn’t mean we don’t fight for the needs of our kids. It simply means we should consider carefully how we fight.

So parents, keep your guns holstered, but be watchful. Be proactive, but not overbearing. Be gracious, but not a doormat. Be wise, but be humble. You have the opportunity and privilege to teach your children and your children’s teachers what the grace of God looks like under pressure in the next IEP meeting, evaluation, or first problematic phone call of the year. But don’t worry; He’s given you the strength and ability to ace that test.