Has your child’s school team ever suggested pulling back supports because your child is “doing so well”? Before you celebrate, look before you leap. In this episode of The Autism Mom Coach, Lisa names the IEP trap for what it is: the success those supports are producing gets turned into the reason to take them away. She was living it the day her 13-year-old was admitted to an inpatient hospital while his school was still talking about scaling back his services. She pulls back the curtain on what’s really driving these decisions (chronic underfunding, a brutal special education teacher shortage, and masking that makes a struggling kid look fine) and lays out exactly how to protect your child before you sign off on anything.
In this episode, you’ll learn:
- Why “doing well” almost always means the supports are working, not that your child has outgrown them, and why a doctor once told Lisa that scaling back at that exact moment is “a huge mistake I see all the time.”
- What’s really driving premature cuts behind the scenes: special education can cost up to three times more per student, the federal government has never funded its share, your district eats the difference, and there aren’t enough special ed teachers to go around. Your kid can become the place they stretch limited resources.
- Why masking fools schools and parents alike, what regression, anxiety, damaged self-esteem, and autism burnout look like when supports come off too soon, and the five things to do about it: demand hard data, take your own data at home, put everything in writing, insist on a trial period instead of a cliff, and bring in an advocate or attorney who knows your district.
Resources mentioned:
- Council of Parent Attorneys and Advocates (COPAA)
- The Autism Mom Coach
- Schedule a consultation with Lisa
Related episodes:
- IEP Slay: One-Stop Special Education Support with Attorney Melissa Gagne (Ep #180)
- What Is an Expert? Why You Know More About Your Child Than You Think (Ep #169)
Listen Here
Transcript
You are listening to episode 160 of the Autism Mom Coach Podcast, the IEP trap.
Has your child’s school team ever recommending reducing supports because your child is doing so well? Don’t fall for this IEP trap,
let me lay out how I usually see this happening. It’s either in a social media post or I hear it from a client during a session, and the parent is so excited because their child is progressing. They’re doing so well. In fact, so well that the school is saying, Hey, maybe it’s time to pull back some of those supports.
Now let me be clear If this decision comes after extensive data collection. Multiple observations across different environments and a carefully structured transition plan with metrics and data for success. That is amazing and genuinely amazing. Congratulations. But if it’s not, I want you to hear this warning look before you leap, because what looks like a victory might actually be setting your child up for failure.
I just remember how my heart just felt like it was bursting when my son’s fifth grade teacher called to tell me that my son was one of the most behaved and regulated children in class, and how he was so polite and welcoming of other students, even though he was also a new student, how pro-social he was with his new classmates.
So if this is what’s happening to you, take in all of that victory and celebrate it. But just know this progress does not mean that supports aren’t needed. It means the supports are working.
I want you to learn from my experience, because the first time I heard this was in a moment of crisis. My son was 13 years old and he was just being admitted to an inpatient hospital for children with autism. I was in complete shock. I was trying to explain to the doctor the kid he was seeing was not the kid that anybody else had been seeing prior to this.
I went on to tell him about how well he was doing in school, how he had learned how to ski, how he was. Interacting appropriately with other kids. He was even competing in front of the whole school in A-G-E-O-B contest. That’s how well he was doing. That’s how confident he was, and this felt like a huge fall.
In fact, he was doing so well that the IEP team was talking to me about scaling back his supports. And this is when the doctor said to me, that is a huge mistake, and I see it all of the time. Schools see a child and he says, particularly children with quote unquote high functioning autism. They see them doing better and they see this as a sign to remove the supports.
He said, in reality, this is a time to double down on the support because it’s working. This is all to say that I completely understand the temptation to start to scale back when your child is doing better because it feels like they’re just moving closer and closer to more independence and everything you have been working for.
But here’s the thing, there is a much bigger story about what is happening behind the scenes that could be impacting this decision that has nothing to do with your child’s wellbeing. There are contributing factors that you need to be aware of, and that first factor is money.
Plain and simple. It cost a lot of money to educate a child with special needs. Up per up to three times as much as a general education student. And where does that money come from? Not the federal government. An Education Act authorized up to 40 per, although Congress is authorized to fund up to 40% of a special ed students per pupil cost.
They have never even come close. The closest they’ve ever come to that is about 20%. In the last few years, the average has been 13%, where does the rest of that money come from? It comes from your state and it comes from your local school district. This is why I always tell parents that IEPs are local in nature.
Yes, the federal law says this, but what actually gets provided and implemented is all about the state that you were in the local school district and how well they’re able to make up for the fact that they’re completely underfunded by the federal government. So you can see how when a child starts to show progress and they look like they’re doing well, the schools might think hey, this is a place where we can stop providing a resource to this child and perhaps provide it to another child who’s not getting the resources because of the underfunding.
I say it this way because, look, I don’t think anybody got into education to sit back and deny children’s services. I don’t think that’s what’s happening at all. I think that schools are facing huge constraints and have to make. Difficult, terrible decisions, and they’re not going to tell you that with any transparency because they can’t.
But that is what’s going on behind the scenes. Second, there is a tremendous special ed teacher shortage in the United States. This predated Covid, but it got so much worse since Covid. So in practical terms, what does this mean? The schools don’t have the appropriate level of personnel required to provide the services that our children are entitled to receive.
And when you put these shortages next to the tremendous need it’s not unrealistic to believe that when a school sees a child who looks like they’re doing well, that they might see an opportunity to.
Stretch their very limited resources. The third contributing factor that I believe goes into schools removing services prematurely, especially for children with autism, is autism masking. And I think that autism masking not only full schools, it fools parents all of the time. It certainly fooled me, especially because what my child was presenting is exactly what I wanted to see.
So what is masking? As we all know, with a child with autism, nothing really is as it appears on the surface. And this can be the same with progress. What looks like progress might not be real progress. It might be masking the exhausting process of your child hiding their autistic traits so that they can fit in or they can avoid a negative consequence.
Anything from a reprimand to being made fun of by other children, so your child might seem fine at school. We’ve all heard this from school staff at some point or another, and in ways it can really feel like an accusation when you’re going to the school and saying, Hey, what’s going on in school?
Because when my son comes home, they fall apart and you get the response I don’t know what happens at your house, but they’re fine in school. There’s a reason for that. Your child is likely masking, and when they get home to their safe place, they let that go. And so you see everything that’s been being held in.
This means that at school, your child may appear very socially engaged. I get how difficult it would be to see a child day to day who looks like they’re thriving and doing well, and to be confused when you hear this information from the parents because it doesn’t line up with what you are seeing with your own two eyes
I remember my son telling me that he was feeling lonely in school. And I was really concerned about this because he was at a new school and I wanted to make sure that his team was keeping an eye on this and working to integrate him with his new peers. And so when I brought this up to the team, they all looked at me like, with these dough eyes of what are you talking about?
Ben sits at the lunch table with the boys every day. He is participating and playing outside. I raised this with Ben and he said to me, mom and my son loves a metaphor. So he said, mom, you know how when you see somebody who’s strong and they lift up a weight and it doesn’t look like it’s hard at all for them?
And I said, yeah, and so he says to me, it might not look hard to you, but you don’t know how they’re feeling inside. And this is what he was experiencing. People were seeing something from the outside, but it wasn’t reflecting what was going on inside. ’cause he was masking. So this is all to say that your child’s progress may not and probably is not the only reason that the school is suggesting a scaling back in their services.
You need to be aware of this because when services and supports are pulled back prematurely, there are consequences and they can be long term or longer term than you would like. And the first is that regression can happen really quickly. All of a sudden, a child who is sitting at the lunch table is sitting by themselves.
A student who was regulated in the classroom begins to have minor outbursts, or that a child that was successfully going to school every day starts to refuse to get on the bus. And all of a sudden you’re seeing your child who was quote unquote doing so well, they seem to be regressing or losing skills they had already mastered.
Second, their anxiety and frustration skyrocket for my son. This looked like. Constant stomach aches and headaches before school, daily meltdowns at home because he wasn’t sure if he understood instructions properly and he didn’t wanna ask the teacher because he didn’t wanna be that kid always asking for clarification.
He was confused about what was going on in school with his peers. He didn’t know if they liked him, and he was just having so much anxiety inside of himself. Once you let go of services, it is an uphill battle to get them back. They don’t just say, oh, here you go. No, there’s going to be lots of, let’s wait and see.
You might have to get an attorney or an advocate involved, and even then you’re not guaranteed to get those services back. And even when you do, how much time has already elapsed while your child is struggling? Number four, and I cannot stress this enough because I saw it in my own son and I see it in so many of the children of my clients, especially as the kids get older, is that their self-esteem.
It gets damaged. They go from suddenly being able to fit in and keep up to not being able to, and it’s confusing and it’s scary to them, and they begin to internalize it as, there’s something that’s wrong with me. A lot of times this is at the intersection of middle school and puberty where two things happen.
One, your child might be becoming more aware of the differences between themselves and their peers, and two, that gap starts to become a canyon, especially when it comes to the social piece of it, the way that these different social groups form and the way they interact with one another.
Go from everybody being kumbaya of elementary school to division and fracture and it’s really confusing to any child. But then when you add autism to that, it just intensifies it all the more.
autism burnout. This isn’t just tiredness or frustration. Autism burnout is a serious condition that researchers are just beginning to understand. This could look like complete physical, mental, and emotional exhaustion. You might see a loss of skills that have been. Mastered for years, you’re going to see things like increased sensory sensitivities. There’s a decreased ability to tolerate social situations because they’re burnt out. They’re no longer able to fake it till you make it, and so they’re no longer able to mask
So what can you do to make sure that this doesn’t happen for your child? First demand data. Hard numbers, not observations, not opinions. You want data that demonstrates that your child can consistently perform without whatever support they are suggesting. Don’t accept vague statements like they seem fine, and everyone’s so impressed and they’re doing so well.
Second, and this is really important, take your own data. The school only sees your child for a fraction of the day, and that is the fraction of the day that they are most incentivized to mask. They don’t see your child after school. They don’t see them before school. They don’t see them on Sunday night.
Take data. Are they having a lot of anxiety that they stopped doing things that they previously enjoyed doing? This is all important for painting a full picture of your child, not just the piece that the school sees when your child is likely on their quote unquote best behavior.
IE masking. Third, put everything in writing. This is a rule of thumb no matter what is going on, unless it’s in writing, it didn’t happen. And this especially goes for the IEP meetings. Any concerns that you have. You wanna put those in writing before you even walk in the door with your parent concern letter.
That is how your concerns get incorporated into the official record for your child. Number four. If your child is approaching that space where you’re like, maybe it is time request, a trial period and not a cliff, this means that you test it out. Maybe you’re fading out an aid or occupational therapy, whatever it is.
Get a very clear written plan in place that guarantees that services stay in place during the interim and that they are not removed, so that if it turns out that, hey, this kid was actually relying on this much more than we realized, you don’t have to go through the heartache of trying to claw those services back.
And then finally consider hiring an expert, either an education advocate or an attorney that is familiar with the players that has a track record of representing parents in your school district. Because you really do want someone who knows the players or is respected by the players.
I’ll never forget hearing this from an ER psychiatrist who was evaluating Ben and she was really concerned about Ben’s level of anxiety in school. She asked me if I had an education advocate, to which I responded, yes. And by the way, I didn’t hire my education advocate until we were in full on crisis.
It worked out. I don’t recommend that, but that’s what happened. And when I told the psychiatrist that, she said, good, because schools tend to sit up a little bit straighter in those IEP meetings. , you can always bring another person with you. A great place for you to vet potential professionals in addition to your local community because again, you really want to know who plays in your backyard. You can go to the website for the Council of Parents, attorneys and Advocates, and from that site you’re able to learn more about your rights under the education laws, and you’re also able to search for advocates and attorneys in your area.
Okay, so demand data, take your own data, put everything in writing. Request a trial period, not a cliff, and hire expert help if needed. But finally, and this is the most important thing, trust yourself. You are the expert on your child. No one at that IEP table. No matter how many certifications or letters after their name, they have outranks you.
They see snapshots, they see data points. You see your entire child. So what this means for you is that you need to let go of being liked.
You’re not at the IEP table to make friends. You are there to get a job done for your child. So you have to grow your ability to feel uncomfortable, to ask the hard questions
Here’s the reality. The people around this table are temporary members of your child’s team. You are the permanent member and as the permanent member who sees your child year after year, day after day, across multiple environments, you know them the best. So if your gut is telling you, no, this is too fast, they still need these supports, trust yourself.
Alright, that is it for today’s episode. Stay tuned for next week where I do a deep dive on autism masking and how it may be showing up for your child at school and at home and steps that you can take as a parent to support your child through this. And as always, if you are struggling to step up and step into your role as the expert on your child, you wanna stop second guessing yourself.
This is something that I can help you with in my one-on-one coaching program. The first step is scheduling your one-on-one consultation, which is free of charge. You can do this right now in the show notes. Alright everyone, I will talk to you next week.
