Educating Young Children with Fragile X Syndrome

Good morning, good evening, good day, depending on where and when you're watching from. A team of elementary school teachers asked us to share tips and techniques for working with young children who have fragile X syndrome.

Fragile X is a truly unique disorder in so many ways, but over the years we've learned much about it. We can point to educational strategies that help and to others best avoided, as they typically don't work. I'm Katie Clapp, president and co-founder of Fraxa Research Foundation. I'm also a fragile X parent. Joining me today is Tracy Antonelli, whose two teenage boys have fragile X. We hope that you'll find these tips helpful.

My plan is to run through about 20 slides that will tell you basically about fragile X syndrome and what it means for young children. Then, Tracy will talk about what she wishes her children's teachers had known when they went to school. It's nice to talk with somebody whose boys are different from each other, even though they both have fragile X.

This is just an intro to fragile X syndrome. I am a parent of two children who have fragile X. These are Andy and Laura, my two children. They're actually ages 31 and 29 now. My husband and I started Fraxa Research Foundation when Andy was diagnosed at two and a half and Laura was just a couple of months old at that point.

So, what is fragile X? It is the single most common inherited cause of autism and developmental disabilities. About one in 4,000 boys and one in 6,000 girls have fragile X. It is inherited, and you'll be surprised to hear that about one in 400 women carry fragile X, which is quite a lot. I carry it; I had no idea. Once somebody is diagnosed, you can kind of go through and see who in the family might be affected.

Just so you have an idea of how much it can vary, Andy at 31 is quite affected with fragile X. He lives here at home, has a day program, and went through the West Newbury and Kentucky school systems until his needs were so much that he went over to the Haverhill Saint James program in grade seven. Now he has a day program that's farm-based, which is wonderful. I love it. But he does need care; we don't leave him alone.

Laura, who has a full mutation, went to college, is married, and has a job. She's saner than I am, and it's just amazing. We had no way to tell, you know, but when she was diagnosed at two months, of course, I thought the world had fallen in, and then she just proved that she was who she is.

Major symptoms of fragile X: I put anxiety at the top because it is so overwhelmingly difficult for many children with fragile X. It shows up in different ways, but almost every parent you talk to will point to the anxiety as the most debilitating of symptoms. Intellectual disabilities are certainly there. Most boys will have an IQ of under 70. However, they really don't have the attention to do an IQ test, so what that means is somewhat limited by the fact that they don't choose to do the test.

Now, girls: about two-thirds of girls have perfectly normal intelligence, and that's why many girls just aren't diagnosed. If Laura was the first child we had had, she would not have been diagnosed; we would have had no reason to go looking for testing of any sort for her.

Attention deficit and hyperactivity are big factors. Attention span can be really quite short, and there are strategies that I'll go through a little later in the slides to help deal with that. Hyperactivity is kind of interesting because when Andy was an infant, he was really very sluggish with low muscle tone; he didn't do much of anything. But then it was as if a switch went off around age three, and he became very hyperactive—really, really hyperactive. That was true for a number of years. He's certainly not hyperactive now, so I think it's something that you would want to consider for the children that you're serving.

Unstable mood: Andy can go from giddy happy to putting his head down and covering his eyes in no time. That all kind of makes sense when we look at the cause of fragile X. You do see behaviors typical of autism. The probably number one behavior that you see in fragile X that's specific to fragile X is hand flapping.

Andy loved to see big trucks going down the street—the noise, the sounds—and he would do this. That's a happy thing, but it's kind of overstimulation, happy, excited behavior. Sensory integration problems underlie a lot of these behaviors for many children with fragile X. When sounds or lights come to them, it's a different experience than what you and I would feel. Loud sounds can be really quite scary.

I heard somebody talk about it feeling as if you're inside a drum. Also, smells can be an issue, depending on who you are. Each kid's different. Yes, good smells are a big thing with one of mine. And tags on clothes—some different fabrics bother others.

There are some physical signs; you won't see them in every child, and they tend to get more prominent later. This little boy you can see has ears that stick out a little bit, his face is a bit long, and he has a prominent forehead. A lot of flat feet kind of goes along with that. There are some muscle and joint issues, and hyperextensive smelling. Joints, especially finger joints, that go way back.

This is more diagnostic than anything else, but when I hold Andy's hand, even now at 31, sometimes it feels kind of loose and cracking. You know, the knuckles are a little disconcerting. That can affect the way they run and the way they move. On the other hand, I've seen some fragile X kids who are athletes, so this varies.

Seizures affect about a third or a quarter of boys. Our son does have seizures, and they're horrible. He had his first seizure at age five, and he still has them. He's on seizure meds for it. In general, girls are less affected than boys, and we'll see the genetics explain why that's true. Although it's really the whole gamut, you could have a girl like Laura, my daughter, who really has no symptoms. I know another family where the sister is more affected than the brother.

Okay, so where does all of this come from? That's a lot of symptoms I just mentioned, and remarkably, they all arise because of one gene on the X chromosome, which has a genetic mutation. That mutation is really a string of extra DNA: CGG, CGG, CGG. You can see it under the right conditions under a microscope.

It's this long string that is at the beginning of a gene, the FMR1 gene, and the effect is like an off switch on a light. It shuts down the FMR1 gene, which is a gene that we all have. Its job normally is to produce a protein. Every gene produces a protein, and in this case, scientists cloned, discovered the gene, and cloned, discovered the protein really at the same time as Andy was diagnosed back in 1991 and 1992.

Then, of course, the next question was, okay, so these kids are missing a protein, just like diabetics are missing insulin. What does it do? A lot of research has been done on FMRP and what happens when it's either totally absent or partially absent.

Fragile X, because we know the gene, the DNA, and the protein, is easily diagnosed by a blood test or a mouth swab. It's a DNA test, and it's quite accurate. As I say, because some kids don't have symptoms, there are many who aren't diagnosed. That means there may be other children in the program or in the school system who are diagnosed as autistic or just have PDD, and they may not have been tested for fragile X.

Can I ask a question? Yes, sure. Are children more likely to be diagnosed with autism first and then go for genetic testing, and then fragile X comes? Yes, good question. It might be autism; it might be PDD because kids with fragile X don't quite meet the criteria for autism. We'll be talking about that. They look a little different. I'm no autism expert, but kids with fragile X are extremely social—extremely social—and that's not what I usually have thought of for kids with autism.

This is the most scientific slide; I promise there won't be more of these except for the inheritance one. Since we know there's a missing protein, that gives us all this power, and this is why we started Fraxa Research Foundation. We wanted to cure fragile X, and we knew there was a protein missing.

So then your question is, what does it do? What happens when you are missing this protein? On the right side here, what you're seeing is a little cartoon of two brain cells, neurons, that do the main work in the brain. Neurons are connected in a great big complicated network, and they send signals to each other.

You know, all the way from you stub your toe, and you know it's going to hurt. The signal has to go from the neurons in your nervous system to your brain's neurons to the pain center, where it tells you, "Ouch." So you have an ascending neuron here; the signal goes down to the synapse, which is the junction with other neurons. This is where the next neuron in the pathway gets the signal.

This is a close-up of the synapse in the next slide. The fragile X protein's normal job is to synchronize and temper the signal so it's not too loud and it's not too soft. This is how learning evolves, where this whole signal passing is finely tuned, and connections for the right answer, like two plus two equals four, will actually be reflected in synapses.

So the two plus two equals four signal is going to get a stronger response than the two plus two equals five signal, if this makes any sense to you. The function of the brain is here, and the fragile X protein fine-tunes synapses. When you don't have it, it's chaos.

So we kind of have to keep that in mind when these kids have behavior issues, and it looks like it's deliberate. You've got to kind of remember that their brains are doing the best they can without a key protein. There are really many other proteins.

Just to make it more specific to the older student that we were discussing, I had her as a preschooler, and one of the things that stood out in my mind was the amount of wait time she required. It was incredibly long, to the point where I would have probably forgotten the directive before she answered. But that totally makes sense given this structural and protein lacking.

I’ve seen it; you know, I mentioned stubbing a toe. When my son stubbed his toe, I knew it was going to be a little while longer than you and me for him to respond to it. Yes, there are lots of other details in here. Specifically, the FMRP's job is to dampen response.

So, she may get very stimulated. Maybe all the kids in the classroom get excited for something wonderful that happens, but it's very hard for kids with fragile X to get back down to baseline because they don't dampen that signal.

Okay, inheritance is kind of confusing in fragile X because it's a little bit like it's X-linked dominant. First off, people can have a normal length gene, be carriers, or have a full mutation gene. I'm a carrier; my two children, my son and my daughter, both have full mutation length genes. They both have the full expansion in their DNA, and that means that they—or at least my son—lacks the fragile X protein.

My daughter might or might not because she has two X's; one X is impacted and the other is not. That process is random in girls in a very early stage of development. One every cell in a girl's body shuts one or the other X gene off.

You could have a carrier mother like me who can pass either carrier status or full mutation status to either son or daughter, and it's kind of a 50% chance because I could have passed my good X down to a child. With fathers, it's simpler; they have an X and they have a Y. They pass their Y to boys. If a male has the full mutation or the premutation, then he has it on his X chromosome, and that will go to all his daughters.

Carrier fathers have carrier daughters and unaffected sons. Here's the bizarre part: fully affected males, if they were to have children, would have unaffected sons and carrier daughters. A little bit more just because only the premutation, the carrier mutation, is in germ cells—sperm and egg cells.

Any questions on that? In my case, it's different because I have three children. My oldest daughter is not affected at all, and my two boys are full mutation. It's random, and I'm a carrier. It's random for women.

Okay, so it could be lurking in families; that's the main point. Right? Okay, autism versus fragile X. You mentioned that certainly some children with fragile X will be diagnosed with autism and vice versa. They both have symptoms in common; they both vary. They're spectrum disorders, so there's a big range of symptoms.

They both tend to have repetitive behaviors and a kind of intersecting set of behaviors. But here's where things get very different: fragile X is diagnosed by a blood test, and autism is diagnosed by a checklist of behaviors. If you have a certain number of behaviors, then you get that diagnosis.

So in my mind, the fragile X diagnosis is really very different. It tells you not so much which behaviors a child has, but it tells you what's going on in their brain—what's wrong. We still don't know what percentage of protein FMRP their brains have because they can be something called mosaics.

Some cells may produce protein, and some don't. But it's an underlying mechanism. Autism is probably a set of different disorders, including fragile X, but we don't know them all. We know autism can be caused by fragile X syndrome; we know it can be caused by Rett syndrome. There are others, and probably in the next 20 years or so, they'll have the causes of many more cases of autism than they do now.

In general, about 50% of fragile X males will meet full criteria for autism, and about 20% of females will. You know, in a way, I don't think it matters that much whether they have an autism diagnosis, except that there are benefits to be had, just the way federal and state benefits are set up.

But I think once you know somebody has fragile X, then you have a lot more information than if you label them as autistic. Just to look at how about 1% to 6% of cases of autism are actually because of fragile X syndrome. That's a pretty broad number, but this is the most common known inherited cause of autism.

So what's special about fragile X? Humor and sociability and imitation skills are strengths, relatively speaking, and so you can really play on these. These two little kids, a boy and a girl, both have fragile X. He loves loud noises; he loves leaf blowers. He loves to have his headphones on. He's very active.

She's very, very social. She had some problems with socializing with other girls, as sometimes happens, but she's a little older now, and she's really doing quite well. She loves to talk—loves to talk.

So it's nice to keep in mind the positives: sense of humor, sociability, imitation skills. We'll talk about this more later. The difficulties, as we've talked about, include anxiety, nervous system timing delays, and speech patterns. I put in here because you'll really notice a kind of cluttering or slurring.

It can be hard to understand kids with fragile X until you get to know them over time. It is hard to slow their speech down in many cases, and I think speech therapy is so critical because they have a lot that they want to communicate. If they can't communicate, they get frustrated. Because of the low muscle tone, it can literally be hard to form the words for them.

So there you have a need for OT because once they realize that they can say things and be understood, it just makes a world of difference. Learning styles: they are simultaneous learners and have a really hard time with sequential learning. They have tremendous memory abilities, so sight words are easy.

They know logos; when they're younger, driving around, they know stop signs, they know McDonald's. It's kind of hilarious. I used to try to read books to Andy and get him to read the little kid books too. He started to be able to read the words on the page, and then I looked at his face, and he's looking at the wall. He's just remembering; he's not reading a word and a next word and a next word. That meant nothing to him.

Use backward chaining; use checklists to mark progress. You want to keep the goal in mind and see if the child can remember the goal. Expect inconsistencies; they are likely to have good days and bad days, and you really struggle to figure out why.

We don't always know. With our son, he still has seizures about once every month or so, and the week leading up to the seizures, he's more difficult; he's less regulated. It's as if there's a lightning storm about to happen. Then after, he'll have maybe two or three seizures over 24 hours, and then he has a great week. He's smiling, he's calm, he's thinking. It's just kind of amazing, and it's been that way for over 20 years.

So there may be something going on in their brains, is what I'm saying, and you really just don't know. If you can try not to get frustrated, it will be helpful because they are so perceptive. They're so attuned to emotions, and they really care how you feel. They don't always show it in the way that you expect.

Since there's so much emphasis on anxiety, what can you work to calm kids with fragile X? Heavy work, like rearranging desks, moving books, having a role, can be extremely helpful. Sometimes you've got to work to find which ones they'll do. It's very hard to get them to do things that they don't want to do, but certainly, there are things they do want to do.

Andy won't do most chores, but for whatever reason, he will empty the dishwasher. He won't fill it, but he'll empty it. Now every day, he empties the dishwasher, and we have him do that before he goes off to do something he really wants to do. Now it's become something that regulates him.

He has a role; otherwise, they'll find their own roles. All the tissue boxes in our house with the tissue sticking up, he has to push them down. There's a lot of OCD here. He's taken that on as a role. Any napkins he uses, he throws them away. That's a good thing. Recycling is something we do every day because he loves it.

So yes, school-wise, I just wanted to tell them with one of my sons, and again with the role-playing, make them feel like they're in charge. It took a few years, but we found out that if Anthony would come into school and if he was the one to take attendance, he liked to stand up there or stand at the door with a whiteboard or something or his little checklist and just make a little mark next to them as they're walking in.

He thought that was the greatest thing, and he looked forward to that every single day. Tyler, on the other hand, could care less. He went in, and he loved to be there and do his thing. But that was Anthony; he struggled for years to get him a job that he loves to do. Jobs like taking this to the office or this and that—they like to be in charge and anticipate what they're doing, what their role is.

Try to be aware of environmental triggers. As Tracy mentioned, hypersensitivities to smell vary from one child to another. I picked this picture because the little boy with fragile X on the right wants to be with those kids in the pool. He's social; he wants to be with them, but he just can't deal with all that stimulation.

Many of us probably couldn't. That gives you the kind of yin and yang; you're trying to overcome their anxiety. If you can adjust the environment—dimming lighting or using headphones—I'm surprised how many children with fragile X crave their headphones and use them all the time. One of mine loves it; the other one does not.

The other thing is at school too. My one son liked to take his shoes off, and they had those round things with the bumps on top. He used to just sit at his desk and rub his feet on it. My other son would actually sit on a ball in some classes because he happened to constantly move, so he would sit on the ball instead of a chair.

Again, it's accommodations, and the teacher is willing to do the accommodations—not to interrupt anybody else, but to keep them. When you arrange seating, see if you can figure out what works for the child—front, back—and it will vary over time.

Thinking indirectly: this is another photo of my son holding a friend's baby. He was really proud to be doing this and very interested in the baby, but the camera was just too much for him. Kids with fragile X can enjoy attention, but they often do shy away from direct attention, including eye contact. Eye contact is like a laser beam.

So if you give compliments about the child to somebody else, if you peek over, you'll likely see a big smile. Having a peer use a triad or a small group to teach through other students can be very, very helpful and can be empowering for the other students.

My daughter was a buddy for somebody in her class who didn't have fragile X but had some social needs, and she enjoyed that. They will learn from their peers; they will imitate everything, good and bad. If the peers can behave, that can be helpful.

We went through the inevitable stage of some bad language when somebody somewhere said something, and Andy detected the excitement, and he just went to town repeating it. Eventually, he got over that.

As far as questions, the president is so-and-so; it's going to be much easier than who is the president because it'll bring them along. They tend to be very responsive to rhythm and pattern. You kind of want to bring them along.

Katie, can I add something really quick? Yes, okay, cool. I have a friend with fragile X, and one of the ways that we figure out things that he wants to do or doesn't want to do is to talk to one another.

So if he were in the room, I would say to Katie, "Does Ryan want to eat this, or does Ryan want to do XYZ?" He will say yes or no without that direct contact. So without you getting the answer from him, you aren't confronting him, and it's decreasing the anxiety, the social anxiety that he would have with you looking him in the eye and directly talking to him.

So that's one way that we will figure out things he would like or not like to do. That's a great point. Also, giving two choices rather than saying, "Do you want to?" You say, "Do you want to eat hot dogs or hamburgers?" Depending on their cognitive level, you won't always get the real answer.

For a long time, Andy would just answer the second one, the second choice. But eventually, he learned to actually be able to express what he wanted.

Strategies for gaining and keeping attention: as I mentioned, they really do have certain things that they get very, very excited about. So if you can figure out what they're interested in and then use those in a concrete way, that would be great.

Andy's schedule board had trucks or pieces of a puzzle with four pieces of a truck. When he completed all four, then the truck was complete, and he got some kind of reward. Sometimes the reward doesn't have to be much of anything—a high five or just seeing that complete truck on the wall.

What they like to do makes you happy, and they love that too. Yes, introduce novel tests in between familiar tests because the novel is going to make them more anxious.

Katie, I forgot to say something when you were talking about the questions or the indirect. I know when my boys were in kindergarten and first grade, we used a lot of visuals. Instead of them being non-verbal, they would pick in the morning and go in and pick something off of a board.

If you're not feeling good, just go up and pick something and put it on your desk. That was early on, though, kindergarten and first grade. I remember as they got older, they were able to graduate from that and move on, but visual cues were always a big first step for us.

Visual cues are great because expression, verbal expression, is especially hard, right? Because it requires the mouth movements and sequencing. Now, receptive language is in general much stronger, and it took us a long time to understand that Andy was understanding everything we said.

So not talk about him in front of him if we didn't mean to do that. He didn't really have great ways to get the words back out to us, but he understood.

Math is especially hard, and that again is the sequential processing. It took a long time to get one-to-one correspondence. Just like math for anybody, the more real it can be to him or her, the better. So concrete examples, real objects to handle can be very helpful.

Visual cues, color coding, numbering, arrows—all extremely helpful. I'm going to just jump in with a really quick question and first comment.

Our preschooler definitely has a high arousal level. The teacher has already begun using heavy work as a transition. She actually has him push the heavy rift in chair, which is a highly supportive chair for him. That's been very helpful to different areas of the classroom where he needs it.

She has a variety of seating options. She's a singer by nature, but in the COVID world, obviously, she has to kind of temper that. But she still finds ways to use music in the classroom, so I love that.

The comment about interspersing novel with familiar is, I just think, key. Knowing both having worked with both of these students, I think this is key for us as staff members to remember to help reduce the anxiety and kind of bookend the new instruction this way.

Also, the younger sibling certainly has motor planning impairment for sure, and this is affecting communication. He's on a speech-generating device right now that we're trialing. I see it as hugely helpful for him, and I just wonder if you've used AAC with any of your children or high-tech, obviously, as opposed to low-tech that is used in the classroom.

When you mention icons and visual cues, I'm just wondering if that component of AAC for communication is a piece. I'll shut my mic off. That's a good question.

I have heard lately from a family whose son is using an augmented communication device, and they absolutely love it for him. Other options, but really getting at the same thing would be, you know, we started with sign language—not a lot of sign language, but same here.

Yeah, more. We're really looking at it as a holistic, total communication approach. When he especially for the preschooler, you know, to understand that you can make your feelings, your needs met, that was very useful.

I know a few families were worried that if they did sign language, their children would never actually speak, but that's not at all what happened for us. It was empowering.

A few years back, I did work with a student with fragile X who was definitely more severe, and one of the strategies that was really helpful for this student was that he would get really overstimulated pretty easily.

What we found, to the point of interspersing familiar with novel things, he was great with imitation. So we would stop if he was getting aggressive, and we would redirect him to do some simple motor imitation and get feedback and praise about that.

It really seemed to calm him, and then he was able to kind of rejoin and get back to this part of our schedule that was a little more challenging for him. But I used that a lot, and that strategy really worked well for him.

Oh, that's a great comment. You just highlighted something that's so important. If you can notice when they are getting overstimulated before it gets out of control, out of control could be aggressive, or in Andy's case, he would take his clothes off and run out in the hall.

Whatever it is, it's kind of saying, "I can't do this anymore. I'm about to boil over." If you can see the signs before it gets to that point, then you know if you get them out of the situation.

If you think back to take a break, you don't want those synapses just overflowing because it just can't get back to normal very easily. They'll worry about that all day and think tomorrow is going to be the same thing. I'm going to come in, and it's going to be bad again.

If you do get in a situation where it feels like a rut, change the environment or change the people. With Andy, when things really got to a meltdown, he needed somebody else to address him because he would be mad at me or whoever was there.

That would be part of the meltdown, and he wouldn't be thinking anymore. So you just exit the scene and let somebody else handle it. Hopefully, you don't get to that point.

I used that. You want me to call your dad? That usually helps. Easing transitions: yes, transitions are hard. Tracy mentioned this: what's his job, what's her job? Can they deliver a letter? Can they turn off the lights? Can they do the trash?

Can they be at the front or back of the line? A little warning ahead of time is good. We spent a long time trying to figure out how much warning to give, and I would just say not too long because if you don't worry about it, no worry.

If you give them too long, I want to say about this: I know with my older son, fire drills—even if you said the word fire—it was such a hard situation in elementary school with the fire drills.

I actually would not send him to school on days of fire drills. One day, Anthony just came up with this, him and the teacher, and he actually has a go box. He named it a go box. It's a little pencil box, a Tupperware box. You write "go box" on it.

Finally, I said we can't keep doing this. You've got to warn this kid, and we've got to get this. I can't keep running up here every fire drill every month. Finally, that's what we did.

As he got older, with the bells ringing, each building has a different bell ringing, and that was another thing. They would let him stay back in the room until everybody left, and then walk the hall to the next class with nobody in the hall.

Of course, he was with his aide. Both of my boys have assistance with them, but it was always good to have that warning because you just never know who's going to be in the hallway. Is there going to be yelling, screaming, a fight breaking out, or a principal yelling at a student?

That's it; you're done. So we just nipped it, and now they either go before the bell rings, stop at the bathroom, and nobody's in there. Do your thing; you're calm. That has seemed to always work, but you definitely got to give the warnings.

Even like I said, another big thing warning-wise: if a teacher is going to be absent, these kids are such on a routine that they know Friday's speech, and she's going to get them first thing when they walk in.

But if Miss Hudson's not there, oh boy, something's wrong. They panic. The teachers normally will send me a text: "Listen, I'm not there today. Warn the boys." It's just a simple communication.

It's a big thing with the families in the school district. You have to remember these kids worry about everything. Just a little simple, "Miss Joan isn't going to be there today, but she's okay; she'll be back," and they'll recover. They won't worry about it all day, but that's a big thing—very true.

Okay, well, this is the last slide. I do have sort of extra stuff, but we won't have time for that. I can make them available later. My organization is focused mostly on funding research, and that's what we've been doing ever since we started in 1994.

I feel like we've gotten to the point where we really do understand fragile X much better than we used to. We certainly don't have a cure yet, but we do understand what strategies work. There are medications that help; it's a different topic.

Generally, it's a matter of handling the anxiety. You know, to a point, the anxiety is always going to be there, but there's a lot of excitement about what's coming.

Thank you all for taking the time to do this. It's really a wonderful thing, and your students are going to appreciate this a lot. I just wanted to say real quick, as educators, over the years, I know especially when they were little, the boys' teachers cared so much.

They tried to do everything, and we brainstormed, and they were wonderful. But I know a couple of them really had a hard time because my boys ended up going into regular classrooms at elementary, obviously with aides with them.

The teachers really had a hard time with them not meeting the first-grade level in reading and math, and they really felt terrible about that—moving them on, not being ready. You know, and I always used to say, "That's not what I'm looking for. I want him to go; I want him to have friends, be social, be able to be away from me for six hours, and just be with his friends and the normalcy."

A lot of times, Anthony still in high school has a rocking chair in his room, and he will rock, and she will do her thing, and he can hear everything. He takes everything in, but he needs to be in a rocking chair; that's his calmness.

The teachers really felt bad for a lot of years, and I used to say, "You know, he's different, and I don't want him to feel that way, but yet I want him to move on with his friends, and it'll be fine. Just one step at a time, and you're always not going to see that atypical."

I want him to do this; it's going to take a while. Everything just takes a while, and one day you're going to be like, "Wow, he did it." You know, just something will click.

How old are your boys now? Anthony is 17, and Tyler is 15. Again, they both have fragile X full mutation. They're a lot of the same, but they're both opposite. One likes cold; one likes hot. One likes the headphones; one doesn't. Loud music, calm music.

You know, so even at school, Tyler thrives; he loves to read. Anthony will say, "Tyler, what does this say?" He's the older one, but you just don't know. Tyler likes to learn and read and, you know, science stuff, where Anthony wants to talk about his musicals and his sweepers and his characters.

He has all these characters in his brain all the time, and constantly his brain is just going. So again, the teachers will get Spongebob manipulatives or paperwork for him to color. "Okay, how many arms does Spongebob have?"

And you know, "If we take his hat off, how many does he have?" They'll come up with questions, OTP, and it always revolves around what he knows—Spongebob or musicals. It used to be Scooby-Doo, and every couple of years, the things change.

But again, it's nice when you're in that little community school, and everybody knows him and what's coming next. You can educate the next year's teachers, and that's helpful because the transition with them is so hard to leave that teacher that they've got that relationship with and move on.

It's really hard every year; it's a challenge. But yeah, you've got to have the compassion there and patience. It's a challenge, and yeah, it is. But you can't feel, you know, I know as educators, you feel bad; you feel like you're failing them.

But really inside, they're getting it. You know, it's just going to take a while before that comes out.