Last April I attended a workshop at Tewksbury Memorial High School (Yeah whatever, Tewksbury Redmen. Please kid, I went to The Tech–GO RAMS!!!). I was so unbelieveably sinus infection-y that I almost didn’t go. I had to bribe myself with the promise of a Frappuccino because I felt attending this particular seminar was THAT important. So what riveting topic would we be discussing?
Raise your hand if you fear IEP meetings more than spiders, clowns, or women who wear bolo ties. IEP meetings are THE WORST! A room full of people trying to put a positive spin on your kid’s lack of progress? Yeah, pass! But since Jack seems to be determined to keep collecting diagnoses, we’ve got A LOT to talk about at his IEP meetings. Since his IEP meeting last January, Jack’s been diagnosed with moderate Autism Spectrum Disorder (which includes ADHD and Sensory Processing Disorder), and Anxiety Disorder. He’s had AT LEAST half a dozen evaluations by Behavioral Specialists, psychiatrists, and specialty clinics. Now that we have an explanation as to WHY Jack has only made minimal progress over the past few years, it’s time to reassess the services he’s receiving at school and modify, increase, or add to them.
Jack was scheduled for an IEP review last January, right after we found out he had autism. We wouldn’t receive the official diagnosis until March, but we knew it was coming. I essentially had what I refer to as a “near-nervous breakdown”. Jack’s medical issues alone are so overwhelming, and all complicated by the fact that he has Down syndrome. Accepting that he also had autism was just too much for my brain to process. I wasn’t in denial of it, but I needed to grieve. I needed to fall apart before I could pick myself up, dust myself off, and move forward with our new reality. And I fell apart in a BIG way. I couldn’t attend his IEP meeting in January, for emotional reasons. I requested that they hold the meeting without me. Since some of Jack’s therapists are new and since I’d never dealt with Jack’s new school case manager I’m sure they all assumed that I was a mentally unstable trainwreck of a mom. And for a short period of time, I was. But there was one person that helped pick me up off the ground and pointed me in the right direction. She was one of Jack’s Early Intervention therapists and without her help I’d still be floundering.
Being a parent to a child with special needs is like being thrown into the deep end of a swimming pool FULL of resources, and you’re just drowning in them because you don’t know which ones to grab onto first, or how to even access them in the first place! Valentina pointed me in the right direction and helped me prioritize which services and resources Jack needed first. She had several therapists that she works with come out to evaluate Jack, all out of the goodness of their hearts. I will be eternally grateful for her help.
Valentina was there to hold my hand, not to carry me. She couldn’t force me to bring Jack to the doctor that she recommended or fill out the paperwork for the therapy that she had suggested. I had to suck it up, get my act together, and do the work. It’s been extremely stressful and overwhelming (and I’ve put on over 70 lbs. in the process), but I did the work. I got Jack the therapy that he needs. But we’re talking about therapy OUTSIDE of school. Now we needed to evaluate the therapy that he was receiving AT school. It was time for his school and me to take a good look at Jack’s IEP.
But the thought of an IEP meeting is enough to send me into a near-panic attack because I desperately WANT to know what I’m talking about. If I think the sensory therapy he’s receiving at school is unsufficient, I want to be able to explain WHY I feel that way. I want to have data to back up my concerns. I don’t want to be the mom sitting in the IEP meeting, twirling her hair, saying “I don’t know. I just kinda feel like maybe he needs more? Like, would you guys be cool with that?” I feel very strongly about what changes need to be made to Jack’s IEP and I want my concerns taken seriously. Since these changes involve dollar signs I assume it’s going to be a battle to convince the school system to foot the bill for the changes I’m proposing. The bottom line is, I want to be taken seriously. I think my requests are reasonable and in Jack’s best interest, even if they’re going to cost the town some money. All I can think of is the “what-ifs”. “What if they disagree with me?” “What if they say ‘no’?” Do I need a lawyer? I mean, how far do I take this if the school system and I can’t see eye-to-eye?
I know that if I reject even the tiniest piece of Jack’s IEP, paperwork gets sent from his school to the Department of Elementary and Secondary Education (DESE) and the Bureau of Special Education Appeals (BSEA). Then I get this indimidating packet of information in the mail that tells me what my rights and options are. I could request a hearing. I could request mediation. Suddenly, I feel like I’m in trouble for something! So when Jack came home with a notice in his backpack with information about a free workshop provided by the Bureau of Special Education Appeals (BSEA) I was THRILLED. When Jack’s IEP meeting took place I wanted to be prepared for the worst-case scenario. And I felt like this workshop would help prepare me for just that. So here’s what we were going to discuss:
There were probably 20 people there, and only 3 of us were parents. The rest were all case managers from each of the schools in our town, and the Director of Student Services. The two representatives from the BSEA were really low-key, which was nice. They weren’t dressed in suits. They didn’t look or talk like lawyers. In fact, one looked like an accountant and the other looked like a kindergarten teacher. In hindsight, I’m sure all of these things were intentional because the BSEA wants parents to feel comfortable using them as a resource. In the course of this year, we’ve had to utilize mediation and let me tell you, I went into packet-making overdrive!
The first round of packets was for Jack’s IEP review in May. Those took me FOREVER to make. But again, I wanted to sound like I knew what I was talking about! So I over-prepared in hopes of compensating for the fact that, come on now, I really don’t know what I’m talking about.
Each color represents a different portion of the packet. Think I’m crazy? Oh, wait til you see what I did next!
I circled, arrowed, and added notes to every page of his evaluations that concerned me. And not with a Sharpie, but by individually scanning each page of every evaluation, adding in the circles, arrows, and comments, then printing the new page on colored paper. Insane, I know.
Bought me a sweeeeet binding machine at Staples (on sale with a rebate, of course!) and I am totally in love with this thing!
And voila! The finished product. I made 10 of these babies just to make sure that I had more than enough for everyone in attendance!
Turns out all of my effort was unnecessary. The IEP meeting went really smoothly and both Dave and I were very impressed by Jack’s teacher and therapists.
But then something happened. Something that required us to enter into mediation with the school system. That “something” is not something I can discuss, but I can tell you that we walked away quite satisfied by the mediation process. Which brings us back to the class I attended in April. What is the BSEA, what is mediation, and when is it necessary? I recently wrote an article for Merrimack Valley Parent (an article that will most likely never see the light of day, but nonetheless) and here’s what I wrote:
Not Happy With Your Child’s IEP? What Are Your Options?
What is an IEP? It’s an Individualized Education Plan that is created by the school for a child who has a developmental delay in one or more areas of learning. Creating an IEP for your child is a process that takes place between you and your child’s teachers and school therapists, which may include an Occupational Therapist, a Physical Therapist, a Speech Therapist, and/or a Behavioral Therapist. The school is responsible for drafting the initial IEP, which would include information about your child’s specific delay(s) and reasonable goals that the school intends to help your child achieve during the current school year. Once this initial draft is developed, you and the school will meet to fine-tune the draft to create a plan that everyone believes best suits your child’s needs. But what if you disagree with the contents of the IEP the school has drafted for your child? What are your options?
Sometimes these disagreements are minor and can easily be rectified when you meet with the school to fine-tune your child’s IEP. However, there are times when an IEP meeting can become heated, even hostile, if a parent feels that the contents of the IEP are an inaccurate reflection of their child’s abilities or behaviors, or if a parent feels that the services their child is being offered are inadequate. If you’ve ever found yourself in such a position, perhaps you felt as if your concerns were being ignored or trivialized. Perhaps you felt outnumbered, as if you were singlehandedly battling the school system to get your child’s needs properly addressed. What can you do to ensure that your child’s IEP meeting runs as smoothly as possible?
1.) Prepare for the meeting in advance. Read the drafted IEP carefully and write down any questions you’d like to ask or any topics you’d like to address during the meeting.
2.) Get outside evaluations, if necessary. If you disagree with the report that the school’s psychologist has written about your child, have your child evaluated by an outside psychologist. If you think your child needs more Speech Therapy than the school is willing to provide, have your child evaluated by an outside Speech Therapist. Perhaps these independent evaluations will support the school’s evaluations. Perhaps they won’t. If the independent evaluations support your feelings that the school isn’t properly meeting the needs of your child, be sure to provide the school with a copy of any outside evaluations you wish to discuss at least 10 days prior to the IEP meeting.
3.) Contact a Facilitator. Massachusetts has this great tool in place that helps parents and educators when disgreements arise. It’s called the BSEA, or Bureau of Special Education Appeals. The BSEA is available, at no cost to parents, in order to assist parents and schools during the IEP process. If you anticipate that disagreements may arise over your child’s IEP, be proactive and call the BSEA. Request a facilitator to be in attendance at the IEP meeting. A facilitator is not there to agree with the school or to agree with the parents. A facilitator is there to keep the IEP meeting moving forward and to prevent the meeting from ending without any resolution. The great thing about having a facilitator involved in the IEP process is that you can request a facilitator before you reject your child’s IEP. Doing so may be all it takes to keep disagreements from escalating. But what if you feel you’re beyond the stage where simply having a facilitator would be enough to solve the problem? The BSEA has an answer for that as well!
4.) Enter Into Mediation. The facilitators at the BSEA can also act as mediators. So what’s the difference between a facilitator and a mediator? Unlike a facilitator, who is involved prior to a parent rejecting their child’s IEP and whose attendance at an IEP meeting is optional, a mediator becomes involved after a parent rejects their child’s IEP. Once you’ve partially or fully rejected your child’s IEP, the school is obligated to contact the BSEA. The BSEA will then mail you a brochure which explains the mediation process. Again, you can be proactive and contact the BSEA, who will be more than happy to walk you through the entire mediation process, even suggesting outside resources such as The Federation for Children with Special Needs. Like a facilitator, a mediator remains completely impartial. Their job is to help both the school and the parents reach a compromise that both parties feel is sufficient. Once a compromise is reached, the mediator will write a Mediation Agreement, which is a contract that is signed by both the school and the parents.
As a parent, you have other options beyond the few that I’ve mentioned, but these are the initial steps you would take to ensure that the relationship between you and your child’s school remains a positive one.
Because of the issue that arose between us and the school, I wasn’t sure if we were going to need to take out a new credit card so we could afford an advocate. Because advocates don’t come cheap. But did this situation warrant an advocate? I really didn’t know.
I think it worked out to our benefit that I couldn’t attend the mediation meeting. I was sick with pneumonia, so I prepped Dave on the situation, told him what I was hoping to achieve, and sent him along with a few packets (Which were, again, unnecessary. Thank goodness I didn’t pay full-price for all that colored paper!). Call me sexist if you want, but the fact of the matter is, my husband is a very attractive man. I am an overweight pseudo-bimbo. Which one of us are you going to take more seriously? Dave, and most men in general, just have a stronger, more authorative presence. That’s just the way the world turns. And you know what, call me old-fashioned, but I’m okay with that. I’d rather be at home, churning out unnecessary packets instead of confronting school administrators. Dave’s a confident guy; I’m a passive-aggressive doormat (although Dave would describe me as more passive-passive!). I think it only worked in our favor that he attended this meeting on his own. But at the end of the day, we got to witness how mediation worked first-hand. And it worked out great. Yes, we compromised and the school compromised. That’s what mediation is all about. But we were happy with the compromise. And I think the school was too, all things considered.
So folks, bottom line–mediation is about compromise. As my high school history teacher, Bill, would say (technically, Mr. Christersen, but he wanted us all to call him Bill) “You can’t always get what you wha” And Bill would never finish that final syllable. Because he was intentionally INSANE!!! (And quite honestly, I think it was a very effective teaching method. The guy was awesome and his class was no cake-walk!)
My friend Bernie (wearing the Boston t-shirt) and me with Bill, circa 1996
And that about sums it up. Except now that I’m looking at this high school photo, I’m feeling all nostalgic and I wish I could build myself a time machine and just go back to high school. Back before I knew what my future held.
As a chart from my all-time favorite TV show, 30 Rock, shows, even NBC’s 2nd most important priority is:
I feel ya, NBC! That’s my priority as well! 😉
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