“Mrs. Lightner, we’ll add the additional hour of OT to Kevin’s plan, but I want you to know that he is the only child in the county who is receiving more than one hour per week. That’s just not our model.”
YES! Success! I did it! My son was only 2 years old, and I was going to ROCK this IEP thing! I mean, after all, I already got him more services than any other child in the county, right?
Pffft. As they say, you don’t know what you don’t know. I hadn’t done any IEP training then, and basically had no idea what I was doing.
Another weekly hour of OT did exactly nothing for him. It didn’t double his progress, as I imagine I was thinking in my head at the time (it was almost 10 years ago). The thing is, I knew my son needed something…I just didn’t know what.
Today, a Facebook group member defined it for me. She said to another member:
“I wasted a lot of time focused on little details that I couldn’t change because I did not know what else to fight for.”
That sums it up, 1000%.
I knew Kevin’s IFSP (which is what PA does for babies 0-3) was insufficient. I just didn’t exactly know what to do. So I focused on one little tidbit, rather than looking at the big picture. And, in all likelihood, I was being lied to. I mean, c’mon, I live in one of the largest counties in the country, almost 1 million people. So how likely is it that my kid was the first to ever receive more than one hour of OT?
I didn’t know what I didn’t know. When you know better, you do better, right?
Now that I look back over a decade of working with various families, it’s crystal clear. Why is it that some moms just make the IEP process look so easy, and some are in a continuous battle? One group focuses on the big picture, and the other doesn’t. One group follows the IEP process, and one doesn’t. Sure, to some extent they do. But mostly they are just constantly throwing handfuls of spaghetti at the wall. Sometimes some of it sticks and sometimes it doesn’t.
FOCUS. Successful moms focus on the big picture.
Now, before we get into this, I want to say: Clear your mind of preconceived notions and biases. I know that some of you are thinking, “Yeah, but my school does this…and then they say that…and then they always say no….”
Most IEP teams are doing the best they can with what they have. Sure, there are some jerks out there, but they are the minority. And, by taking the small picture approach, you’ve made it very easy for them to say NO. As did I. I was asking for a very specific item-one additional weekly hour of OT. That has a very specific cost attached to it. It’s very direct, yes or no.
What I should have done is heeded my own future advice and looked at his IFSP as a whole.
When I learned to do that, guess what? He got Vision and O&M assessments. He got feeding evaluations and began the SETT process. And then as a result of that, started receiving Vision Teaching and O&M training from TVIs. He began intense feeding therapy. He received therapeutic seating (which enabled him to better focus on fine motor tasks) and AT to begin communicating. We applied for Medicaid and then got wraparound behavioral health, which meant an additional 35 hours of direct (ABA) services each week. He was the most programmed 4-year-old you’ve ever seen.
And he made progress.
I hadn’t been looking at Present Levels and rate of progress, I was focusing on services. I hate to use the analogy of “battle and war” because I don’t want parents to think of it as a war with the schools. We need to be collaborative partners in this. But the fact is, I just kept fighting the battle for one more hour of OT, and finally I won that battle and was quite pleased with myself. I was focused on one specific item and in turn gave the team one specific item to say yes or no to.
How to be a successful IEP parent.
Ready? Let’s dig in. First I want to give some overall tips on how you can be a better advocate for your child.
- Focus on the big picture. That’s not to say that you neglect the nitty-gritty details within the IEP. But it’s very seldom that an IEP is solid and appropriate and being followed with fidelity, and just has one little detail to be taken care of. In fact, if the IEP is solid and being followed, chances are parents won’t even notice that one little detail. There is very seldom just one thing wrong with an IEP–you need to look at the big picture and work to fix ALL of it, not just one detail.
- Accept what you cannot change. Things like the speed of the IEP process. Or the fact that your child has disabilities. The behavior of others. Facts like “the good guy doesn’t always win.” You could go all the way to Federal appeals court and still lose.
- Participate in the IEP process, all the time. You don’t want your team members only thinking about the IEP during one meeting a year. Neither should you.
- Use the IEP process and stick to the process. This will calm you because you will have a designated plan of action (below) rather than just putting out fires and flailing all the time.
- Stay child focused. In our group, I say this all the time to parents, particularly when they are complaining about their school. Instead of “there’s always a substitute” change it to “my child is not receiving consistent XYZ per his IEP…” It’s not about what school staff does, it’s about what your child needs and is to receive, that isn’t happening.
Child has an IEP, but it’s not working, we need help.
Ok, my first bit of advice, and most important: DO NOT wait until the IEP meeting.
I mean it! If, in your head, you’re thinking, “Ok, I have a list of concerns, I’ll just bring them up at the next IEP meeting…” NO! NO! I’m wagging my finger at you. Do not wait!
Parents have several opportunities to provide input in the IEP process, and some of them occur BEFORE the IEP is drawn up.
How to fix your child’s IEP
- Gather your thoughts. In your gut, something isn’t right. Now, sit down and describe it, define it. What are you seeing? What is your child doing? How are they not making progress, what areas? Make a comprehensive list.
- Get out your child’s IEPs, the two most recent ones. For both, you want to look at the Present Levels of Performance section. This is the section that drives the IEP. IEPs are needs-based and needs-driven. You want to make sure that this section is complete, thorough and accurate. If there are things missing, there are several ways to get them put into present levels. One is to ask for more or different evaluations that would pick up a concern that perhaps the child was not previously tested for. The other is ask the team to reinterpret previous evaluation data. And the third is to get it put in via your Parent Concerns letter.
- You also want to compare goals from one year to the next. Are the goals appropriate? Are they yours/your child’s priority? Do you have any “disappearing goals?” (goals that were not achieved, but disappeared from the IEP) Are they achieved across all environments? Make notes of what you are finding.
- Write a letter, asking the IEP team to convene, because you have concerns. List your concerns, -ALL of them. Even if it’s really long, better to get them all on one letter and just start chipping away at them. It is not my recommendation to voice some concerns now, then more in two weeks, then more in another three weeks and so on. Just give them one big letter to work on. Send it to whoever you correspond with about IEP issues.
- What are you asking for, more evaluations? Goals not appropriate? Goals are good, but not enough SDIs to get there? Again, I can’t say it enough: be thorough and be specific. If you didn’t write it down, it didn’t happen. It’s best to take a few days to do this, rather than jam it all out in a few hours. You’ll likely forget things if you do this too hastily.
- And you wait for their response. They should respond within 7-14 days. At each step, they are going to offer or decline your requests. And at each step along the way, ask for it on a PWN. You can decide from there how you want to proceed.
Keep in mind, this situation didn’t develop in two hours. It’s not going to be resolved in a two-hour meeting. It likely will take lots of back and forth, several meetings and so on. But, I have found that with perseverance, it levels off in 3-6 months.
How to get started in IEP process for a child with no IEP
- Again, this would include 504s. If your child has a 504, but you feel it’s not enough, this is for you. Here are the steps to have your child evaluated for an IEP.
- Gather your thoughts. Think about all the ways you feel that your child is struggling in school, with homework, socially, etc. Start listing them on a piece of paper until you feel your list is complete.
- Draft a letter to your school principal. I can’t say this enough–do EVERYTHING in writing. If you didn’t write it down, it didn’t happen.
- If you need some help with your letter, there is a list of more than 25 special ed letter templates here.
- Be specific. “Dear Principal, I wish to have my child evaluated for special education services. This is what I am seeing and I am concerned that he/she may have a learning disability because….” and list your examples.
- End your letter with “…and I wish to receive a permission to evaluate form within 10 days so that we can begin the process.” You can read more special ed timelines and evaluations here, keeping in mind different states have different timelines.
- That’s it. Wait for their response and/or the PTE form. You now will have several opportunities to provide input, you can read about those here.
- If the school does not agree with evaluating your child, or suggests RTI or a 504 instead, that’s just something you have to personally decide. Whatever they offer–ask for it on a PWN, and proceed from there. I would personally suggest getting RTI while you are waiting for evals, but not in lieu of.
Ok, that is simplifying it a bit into 6 or 8 steps. I have a more thorough post of “How to get an IEP for my child” here.
Lastly, one of my main mantras to live by:
“We cannot change the cards we’ve been dealt, only how we play the hand.”
So rock it, moms. Go play the hell out of the hand you’ve been dealt.
If you have specific questions, please join our Facebook group and ask.
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