Nearly three years ago, I wrote this post about how to have a good IEP meeting. And to be honest, I have had many good IEP meetings. But something unusual and “not quite right” is currently going on at my kids’ school, and I’ve done a little additional training
I just came back from Amelia’s IEP meeting, and it was a good one. I know that some of you are reading this and wondering how I got so lucky and why YOU can’t have a good IEP. Why is it a day that brings on stress, and possibly rage and tears?
I HAVE BEEN THERE. IEP meeting day used to bring me nothing but anger and tears and left me feeling like my kids were not getting the quality education they deserved as Americans. I won’t say luck (or blessing) didn’t play into it, but I no longer struggle like this. Part of this is due to the school and dedication of the teachers, but even here, there have been hiccups and I’ve needed to fight at times. However, a good foundation of education and groundwork can help your IEP go smoothly. I’m sharing what I’ve done to get the best chances of an IEP meeting that serves my child.
- Know Your Rights
For children with special needs, the ADA and IDEA exist to protect the rights of people with disabilities – and that includes your children. For example, did you know that kids with Celiac Disease are protected under the ADA? Even if your child has not (or not yet) been diagnosed with a disability that provides the services, you should research what provisions can be made for your child’s needs. What has been done for other students in the area in the past, even if in a different school, and what can be done now? A great resource is the Wright’s Law website. In addition to knowing federal disability laws, you should also know your state laws as well. Finally, do not forget that when the rights of the disabled are trampled upon, this is a civil rights issue! Anything that I’m going to talk about on this list is included. Every American child with a disability has a right to a Free and Appropriate Public Education (FAPE). If they are not getting one it’s a civil rights issue and you need to make that known!
- Get Special Training
Ever hear of the Gaskin case? Yea, me either until last week. Turns out it’s a lawsuit from the 1990’s in PA when inclusion and the least restricted environment was not well-enforced or addressed in this state. It’s from this case that, at least in this state, you are able to sue to get appropriate services for your child if you feel they are not being fairly or properly included in their current school year. I’m not sure if Gaskin applies to other states, although I know a similar law also is in effect in New York. Again, you need to know this information – proper training can help. Contact your local special education services resource, mental health department, or any organizations that focus on inclusion or supporting students with disabilities or specific needs, like an autism resource. Ask if they have specific training designed for parents to have effective IEP meetings that benefit the student.
- Ask for Appropriate Data
This is another new one for me. You need to ask for specific tools a few months out from the IEP. First, asked that data be graphed out visually, so you can see if progress is being made. Second, make sure the data is clearly organized. If you see results for 2 separate rubrics mixed together (like how your child is doing on 2 separate sight word lists), ask for them to be pulled out. Data should be taken regularly and numbers/percentages tracked against the IEP goal (“answered properly 10 out of 20 times”). You need to see your child’s name, the goal, where data is collected and how. If you feel that data is NOT being properly collected by a therapist or teacher, you need to make sure that youspecifically request it for your IEP. This is unacceptable! Finally, if behaviors are repetitively occurring, ask for a functional behavioral analysis (FBA) to be put in place. From there, you should work with your case worker to develop a Positive Behavior Support plan. You can ask for this in an email, so that there is a paper trail and make sure to cc your LEA representative on it.
- Keep Those Graphs Moving Up
One of the most important things I learned this week is that a child should always be progressing toward their goals. The reason to use bar graph is so that you can see that line is moving up. If it’s not, then you need to make changes, especially if the graphic is going up and down. Either the goal is too difficult at this point or the method of teaching it, the better option, needs to be changed. Every IEP should have changes of one sort or the other. If your child is not progressing, something needs to change. Period.
- Hire an Advocate
If your research has hit a wall, or your child has not been diagnosed as you believe he or she should be, or you in any way feel that you are missing something, it’s time to enlist an advocate. I don’t know if they are free in all areas, but here, we have advocacy services through the local ARC of Lehigh Valley. Find a provider like this or one that caters to any diagnosis your child might have. Meet with them – even if via phone – and ask them plenty of questions. Enlist them to come to your IEP. Advocates are amazing people – ours have dropped things in a moment’s notice to stand up for my kids’ right. Just their presence in the room can change the entire dynamic of a meeting. I always recommend never attending your child’s IEP meeting alone. If things are rocky, having an informed professional is your best option.
- Know The School’s Limitations
Budget cuts REALLY SUCK and they are deep and painful right now in PA. (I wrote this sentence 3 years ago and it’s even more true today – with no balanced budget coming out of Harrisburg and public charter funding being choked off more and more.) There is only so much a teacher can do when aides and paraprofessionals are limited, class sizes are out of control, and teachers are laid off time and again. Add the complex issue of state testing and the disastrous No Child Left Behind that cuts schools that can’t possibly perform well, and you see the problem. I’ve heard teachers I know and care about tell horror stories that make my hair stand on end. They are being asked to do things that no human being can possibly achieve, for ridiculously low amounts of pay, and frankly, I’m surprised more of them haven’t quit. (This goes to show the depth of passion most teachers have for building the minds and character of our kids.) Please be sympathetic to this – and educated where your school lies in this wreckage of public education. You may be asking for the impossible, so stick to what you honestly think can be done better when making requests.
- Be Involved to Learn About Problems
Yea, I know, it’s hard to ask parents of kids with disabilities to be more involved. Between paperwork, doc appointments, therapists, alternative care, medicines/supplements, special diets, money, work, and more, how on earth can you be more involved? I get it. Sometimes, though, this gig of parenting doesn’t just call for “hard choices,” it calls for impossible ones. You need to balance out EVERYTHING in your life versus what is best for your child and that includes his future. It’s not going to be easy, but if you are not very involved and don’t know what’s going on in the school day-to-day for your child, you can’t effectively advocate for him. And the truth is, parents, no matter how top-flight your advocate is, the BEST advocate for any child is their parent (or caretaker). Look at that work schedule and seriously consider ways in which you can find time to be more involved. And don’t just be involved after hours. Try to get there to see what’s going on. Learn who you can trust – or not trust. Do they have insight? And please, trust your gut. I recently learned that my daughter was not being included as in prior years. I wondered why I always saw her in one specific room. That IS NOT inclusion.
- Figure Out How to Achieve YOUR Goals for Your Child
You have goals for your child, you know you do. It may be that she will have a job one day, or go to college, or to live in a group home, or just learn how to keep herself safe. Depending on your child’s abilities and limitations, you may not know what will happen in adulthood but you do have a slim to firm grasp of where she can land in 1, or 2, or 5 years. Take those and run with them! What great thing did the teacher say about your kid that you’d like to be built upon? What’s gnawing at you that didn’t work? For example, today we discussed Spanish, something Amelia is not good at and doesn’t like – and I honestly don’t think she has a clue what it’s all about. She’d be better spending that time mastering her first language, or learning about Spanish culture and why people even speak other languages. I brought that up, and we made the change, which is more practical for her and will make a smoother school day for her next year. If you are an involved parent, the teachers & staff will know and respect this, and be open to suggestions, especially if they make sense within the structure of the school. Remember, they want a smoother school day for your child too – it makes it easier on them.
- Advocate for Inclusion
One more thing. I advocate for inclusion, formally knowns as the “Least Restricted Environment” (LRE) that your child can learn in. As a parent, how much inclusion your child should have is your choice. Research shows that kids with disabilities do better when fully included as much as possible. Your child should be studying the same subjects at the same time as other kids, in the same room, with an aide if needed, at the level of their IEP. Don’t say, “I’m good with a life skills class.” That’s your job, and you can teach it especially true if your child has autism but is academically successful. How can he learn appropriate behaviors if he is not included with kids who know how to behave appropriately? (One of my many pet peeves with “autistic support” classrooms.) Inclusion has also shown to be beneficial to other children! I’m insanely passionate about this after my gregarious oldest child who does NOT have autism was segregated into an autistic support class with 2 children who did not speak and only included for about 5 minutes a day in kindergarten, during which time she was fed Skittles. (Ok, don’t EVEN get me started!) Our neighbor’s son, who was in her class, had no idea the following summer who she even was. Your child should be included as much as he can for the good of the whole community. This will take work, lots of it, and support, but it will really prepare him to be a functional member of society when he grows up.
- Be Calm
If you show up to the IEP meeting expecting the worse, out of breath, angry or anxious, with little sleep and no breakfast, you’ve already set the tableau for how it’s going to go. You don’t have to go in with “this time will be different,” but stop expecting “The Worst” before you even get out of the car. Make sure you have had a nutritious meal, try to sleep well the night before, calm yourself with soothing music, prayer, or deep breathing beforehand. Showing up frazzled helps no one – the staff will take one look at you and be defensive. Anger does you NO GOOD.
- Know When to Cut and Run
Maybe each and every time you go to an IEP meeting, there’s a voice inside telling you this will never, ever fit your child. Maybe the staff has NOTHING good to say about your child, and they scramble to even write down one “strength” on your child’s IEP. When that happens, it’s time to rethink it all. Maybe they will be served better by a charter school, a private school, a school for special needs, a cyberschool, homeschooling, or a homeschool co-op, full inclusion, less inclusion, etc. We live in a day and age when the options for children with special needs are bigger and more diverse than ever. Or maybe, you find a temporary solution until something better comes in. I have a friend who has a child with Down syndrome and another gifted child, who both struggled after a relocation. They were not served well at all by the school system and the family chose to homeschool for one year, while other options were explored for the following year. A difficult but temporary measure, this decision is not for everyone, but you need to honestly lay your cards on the table and figure out what is best for your kid.
- “Celebrate Then Move On to the Next Thing”
This is a new point I’m adding that I was surprised by. As far as I’m concerned, the plan right now is that my girls will complete middle school, go to high school with possible career-directed vocational education or support (NOT life skills), and college is a possibility should it match their desired profession requirements – or desires – and my budget. I was surprised to hear my inclusion expert say, “Most parents just say, ‘Yay! we’re done!'” Don’t say that, at all. Your kids can do much MUCH more than most schools are willing to credit him or her for. Your child can major and can have a career/job that is outside the usual. Today, I’m hoping Amelia will become a photographer focusing on nature or work with animals, and I’d love Zoe to be a chef and/or holistic nutritionist or herbalist. YUP. You heard all that right. I have no doubt they can, if that’s what they want and those jobs match their skills.
I hope these ideas help you. Remember that the bottom line is NOT your pride, your feelings, or your anger. It’s is getting the bulk of your child’s week – school is what, 30+ hours? – in line with something productive for your child that will grow him or her into a better adult. NOTHING else is at stake. So check your feelings at the door, stride in with confidence, and do the best you can for the one of the people you love the most.