Updates on Frankie’s Progress

9/23/2017

Frankie has almost completed his first month of second grade. The special ed teacher and the aid who was in his class last year have gone with him to this grade which I am thrilled about. The gen ed teacher seems wonderful too. He has had a few blips like being annoyed or not wanting to listen but sometimes it’s hard to remember what is kid stuff and what may be part of the HL3.  So far his grades all all 100s except for one test where he got a 73. His reading level is above average, although his vocabulary is higher than the actual comprehension part which seems to be a thing with him.  But I’m fine with it because he is in the highest level reading group and I think it’s important to remember that he is not a genius, but learns and thinks differently in certain areas.  His main issue is conversation.  He still doesn’t like to initiate it and this hinders his social skills.  I am working with the teachers and the speech therapist to get him to have an easier time of it.  I still think it’s more because he really didn’t speak on age level until five years old. He turned seven in July so I think that part still has to develop.  I will post some pics from his first day which doesn’t make him seem thrilled to leave but he was happy when he got home and said he had a good day.

 

Not so thrilled LOL

Getting home

Getting home

8/16/2017

So Frankie and Noah went for their yearly well visit today.  They saw a new pediatrician since this practice seems to have a terrible turn around, but that’s not my reason for writing today. My reason is of course the lack of knowledge so many have on HL and HL3.  So this doctor, who was very nice by the way, wanted to know about Frankie’s history and he saw the speech delay.  On his history of course it says how we had to settle on ASD and then I have to begin the explaining. “No, doctor, he is not autistic.  He has Hyperlexia 3.  I know you probably never heard of it…blah blah blah.”  And the reason I am frustrated is because of course, since he has never heard of it, I simply look like a mother who is refusing to see that my son is probably autistic.  The good news is, he was receptive to what I was saying. He even took notes.  He said he would look it up. He took down Dr. Treffert’s name and I truly hope he educates himself on this.  It would be one thing if HL3 was recognized and people just didn’t know about it. But I know what it looks like when I come in with a diagnosis that isn’t really a diagnosis. It baffles my mind that kids like my Frankie, who so CLEARLY follow a similar timeline and outgrow the autistic tendencies, have to be judged and classified the wrong way!!  And I know if you are reading this, you too have probably faced this as well. It just makes me all the more determined to spread the word.  It’s the parents who write me thanking me for this website. It’s remembering all the heartache I had to go through not knowing what Frankie had, with autism just never making sense.  It’s the mistakes I made because I did not have the proper knowledge of HL3.  SOOOOO frustrating!! So again I ask all of you to please spread the word.  I try to keep it as simple as possible. If a child teaches themselves to read before the age of five and possibly had issues with oral language and are affectionate, not fitting the typical signs of autism, then they could very well be HL3.

8/5/2017

Well, summer is flying by of course. I’ve been trying to keep both Noah and Frankie busy, mostly because they are ready to kill each other, but my tactics have only slightly been working.  So I have noticed that Frankie is talking back a lot. It’s tough with him being the first and having the HL3 because I teach high school and I don’t really know when these behaviors are normal kid stuff or having to do with HL3.  He is spoiled unfortunately so I think that has a lot to do with it. Also, him and Noah have been fighting like cats and dogs, a lot of rough house and when they get angry they do this. Again, not sure if this is just kid stuff. But I am thinking most of that is.  We have gone to Liberty Science Center, the movies and Frankie can be very grown up sometimes and other times, not so much.  He has been watching a lot of YouTube kids and videos of kid playing with toys that him and Noah like. Right not its PJ Masks and Tsum Tsum.  I notice him copying their tactics, like as if he is being taped and he is explaining what Noah and him are doing and what the toys they are playing with are. One day I have to see if he would actually want to tape himself doing this. He is also moving to a tougher level in Ninja classes and we have had a little bit of a tough time with it. The teacher is different, it’s a different day because it’s summer and the obstacles are harder. The last few weeks he has had no interest in going, I forced him this week and he was crying and carrying on in the lobby.  After a few death looks and the instructor telling him he had to try and if he didn’t like it then we would talk about it, he went in and maybe five or ten minutes in he was fine and loving it. Frankie tends to shy away from things that are changed.  I guess this still goes back to transitioning a bit.  But he is very good about getting over things.  I will post some pics of things we have done 🙂

Still loves the water!! Always has!!

Air Trampoline-he was nervous with this but I think more because of the teen helping him.

Painting seashells we found at the beach!

Loves the beach too!

Still love the rides! Noah is terrified but Frankie is patient with him 🙂

Loves our puppy Lulu!!

7/12/2017

So Frankie is almost finished with his week of CCD (Catholicism classes).  Last year he cried everyday before I left him, although he did stay ok for the rest of the day and by the end of the week he was better. However this year he was totally fine, although slightly bored and unmotivated about it 🙂  But that’s to be expected.  The second day he didn’t even want me to go into the gym with him.  He is in the class with twin brothers and I would like for him to talk to them and his peers more, but he is still quiet.  When we spoke to him this year about initiating conversation, his teacher told me he was getting good with it. I’m not being as picky this week because he is only here for a week and I think most kids would be shy not knowing who they are even with.

When he is happy, he still tends to “hum” a little and seems to go off for a second where I know other kids would just verbalize about what they are thinking. I simply remind him to talk about what he is thinking and he says ok, but never really goes into detail.  This is something I think we will have to push for some time.  My little guy Noah will just discuss things with people and he only just turned three.  The difference in their verbalization at the same age is extraordinary.  But Frankie took his own route and caught up, but to me there are “side effects” as I call them for lack of a better phrase.

 

 

Not so motivated at CCD 🙂

7/5/2017

Hi again! It’s been a busy few months and by the time I get to update this, I am usually in bed and then I fall asleep 🙂  Well, this has been a really good year for Frankie overall.  He received straight As across the board.  He has been trying to initiate more conversation with kids in his class. Since we spoke to him about it, he seems to remember to make the effort.  I think our HL3 kids need certain reminders that not all kids may need.

He wound up doing very well in the Ninja show.  The instructor walked him around the obstacles to give him a heads up. He was very nervous coming out with the group and I thought he was never going to do it, but with a few stern looks from me and a little time to adjust, he did great.  He did not want to receive the awards at the end when they called his name and he cried but I didn’t mind. He did the show and that’s what counted.

He also received the excellence award for Spanish out of the first grade classes.  We had a to laugh a little at first because here is a kid who couldn’t speak English until he was four and now he is bilingual lol  For some reason he took this incredible liking to it. It’s interesting to think it may have something to do with language and his HL3.  He also went up for his award with no problem!! I was in such a panic he would refuse, but he was great and went up for his award!  I was so proud of him and it just is so great to see him get more comfortable with things.

He also (finally) lost his two bottom teeth.  I did not put him in summer school this year to give him a break. He will be attending CCD camp next week so I am hoping that goes ok. We also went to see fireworks this week and he just loved them!!

His 7th birthday is coming up and I went to his school for his birthday celebration in June since he is a summer baby.  He was so good and happy to see me and his dad! There was a time when he would cry if he saw us there.  He also left with us even though he would have normally taken the bus.  When he was in kindergarten, we had an IEP meeting and he became like a crazy person when he saw us and we wanted to take him home instead of him going on the bus.  He has come such a long way!

Ninja Show!

Awards Ceremony

Finally lost two teeth!

Frankie's school birthday party!

Firework Celebration!

5/23/2017

Hi everyone! Frankie is still doing well, although there are always little hiccups along the way.  This month we had the change of seasons.  This is never a fun time for us.  Once Frankie gets used to something like sneakers, pants, long sleeves and so on, he doesn’t like the idea of then going to shorts and short sleeves. We had a few rough days where he fought us on the switch but he did get better with it within a few days.  However, there are still compromises to be made.  This week it is chilly out but he still wants to wear shorts and short sleeves so we compromised and he wore pants and short sleeves.  But you get the idea.

The other issue we had was Frankie still doesn’t always get how to explain things to us.  His school had field day last week and he loves the outdoors things but or some reason he kept saying he wanted to stay home from school.  Normally in the past I would ask him what was wrong and he just gave me all different answers after I gave him some options to pick from since he wasn’t giving in.  This time he shocked me by saying the kids ignore him.  Well, I had to try not to cry. He has ALWAYS been well liked in his classes. Everyone loves him.  But I guess he is at an age where if he isn’t initiating conversation he isn’t really conversing with his peers.  He will join groups in class and play but I guess because he isn’t going into the class and just talking about his weekend, the kids may feel like he is being standoffish or he just doesn’t like them or want to talk to them. I talked to him and told him he had to try and start talking to people first otherwise they may think he doesn’t want to talk. I gave his teachers a heads up and I did push him to go to school. He wound up having a great day and he told me he talked to his friends Nick and Logan.  He was very happy about that. I always knew this would be a problem. As much as he talks now and he is talking on level, there are still social aspects of the language that has to develop.  I have to remind myself that he only started talking normally at 4 and 1/2.  But his grades are great and he is doing really well.

He is also the best in his ninja class and they want him to be in a show with the other ninjas. I was very worried about this and was going to leave him out of it at first because I know how he reacts in these situations, but his instructor asked and said she would love for him to be in it. Soooo, I am prepping the hell out of him lol  We talk about the day it will be and that it will be on a different day than his class. His instructor knows about the issues he may have and is working with me. So I pray that goes well lol  I am also going to be making up some awareness ribbons if anyone is interested in buying them. I am going to start off with car magnets and if those work out then I will try some other stuff. I want to the world to know that our kids cannot be forgotten simply because they do tend to get better and better.  Kids deserve the right diagnosis and parents deserve the truth.

4/24/2017

Hi everyone! I’m very sorry I have fallen behind in updating.  Frankie is continuing to do really well.  His grades are impeccable.  He has As and A+ in every subject.  One of my fears when Frankie showed signs of having problems and needing to be in special education was he would never be self-sufficient.  I’m so thrilled he is doing so well. In other areas, he still has some trouble.  He needs to begin conversations more.  He also likes to talk opposite still, like it’s his way of being defiant when he isn’t happy about something.  He also doesn’t like compliments.  These are things he has done for years and we continue to work on it with him.  He did have a music performance with his class and although he isn’t quite where we would like him to be, he did much better than his kindergarten graduation where he wouldn’t participate at all. This time, he sat on the side but he did go up with his friend and say the line he was supposed to which is ironic because he did the harder part of talking in front of everyone instead of singing with the whole class.  But, it was nice to see him progressing. I have been very lucky this year when it comes to his teachers.  They are both wonderful and so is the aid in the class. I think that makes all the difference.  This is the first year I didn’t feel sick going to his IEP meeting.  And it went great. He will continue in the special ed half of the class with the two teachers and aid. So same set up as this year, the one I fought for because that is what he needs.  HL3 kids need that extra boost but they do not need self contained.  Don’t be afraid to fight for what you believe your HL3 child needs.  I made a stink and I didn’t care.  Frankie is still doing ninja classes and he is excelling in those as well. He only wants to do one class instead of two which is fine by me as long as he has this and he enjoys it.  He will be moving up to the next class in it because he showed he could master everything he needed. Frankie is also starting to draw again which I love because he was so good at it.  A sad part of this is he doesn’t like to spell as much as he did. It was more of an obsession and desire when he was younger but now he is good at it still but it just isn’t apart of him like it was.  It’s kind of like those skills help him to do well in school, but it isn’t apart of him in the everyday aspect like it was.  I know there is more I wanted to mention and I will post some more pics.  Please feel free to email me or contact me with any questions and please keep spreading the word for other HL3 parents to help their children!

Frankie loves to participate in the school/class activities which was not always the case when he was younger.

Frankie's drawing of the Pigeon from the Mo Willem's book

This pic is Frankie being silly but it reminded me to tell you that change of seasons are still not fun. He does not want to let the jacket go. We are working on it with compromise. I will keep you updated.

Being silly after his class music performance.

His brother is his best friend.

Haircuts are still not fun.

Frankie loves science so we started doing experiments at home.

He doesn't mind putting on snow gear anymore and loves playing in the snow!

1/29/2017

Tonight, Frankie reminded me of when he was little. When a demand was put on him that he did not like, all hell broke loose.  It being the end of the weekend, we needed to get homework done. He wanted nothing to do with it. Sometimes I ask myself, how do I know if it’s just him being s kid who hates homework, or something with his HL3.  I guess we won’t ever really know for sure, but it’s stinks either way.  He cried and screamed and of course kept saying the opposite.  I remember doing this as a kid too, so again, I don’t know if it’s HL behavioral issue or not. We took away him being able to watch his new favorite show SpongeBob and his Bob the Builder toys.  He did finish the homework and was then allowed to watch TV with Noah but only what Noah wanted and he had to deal with it.

Now, this other problem that occured at the same time I’m pretty sure was HL.  Noah was writing on a school announcement paper that I was planning on throwing out.  Not only did he not want his brother to have it (typical kid behavior) he did not want it thrown out at all.  He became attached to the paper because he knew it was his.   His teachers tell me he does this in school. If they give out a math sheet and decide they don’t like it and collect it to throw it away, he flat out refuses to throw it out. It’s like he gets this attachment to it.  I eventually told him that either he threw out the paper or he couldn’t stay in the big bed with us, which yes, I know, he shouldn’t be doing anyway.  But, he threw it away. He did, however, feel badly that he upset me so much and was very attached to me after the fact. He knew how angry I was and although he still felt he was right, knew that I was angry and didn’t want me to be.

Frankie LOVES American Ninja Warrior and we found a Ninja Zone right by us! He trains two times a week!

Frankie and my mom (his Mema) who also writes on this site.

Frankie takes Santa much more seriously now and is not afraid (he tried to encourage Noah but it didn't work lol)

Frankie is much less nervous about trying new things!

Frankie's first grade class picture!!!

Frankie is much better with pictures and loves to smile big!!

1/3/2017

I truly apologize for taking so long to update the website.  I guess in life when things are going more smoothly, we tend to be complacent about certain things.  Thankfully, Frankie continues to do very well in school, thank God.  He (knock on wood lol)  gets all 100’s and 90’s with a few 80’s in between.  So overall, he has been doing excellent.  His HL3 skills, I believe, are what help him to do so well.  However, what I have noticed (and what my mom has come to disappointingly realize) is that as Frankie is getting older, the more he is just like any other kid.  The “genius” aspect isn’t quite there the way it used to be.  Now, I don’t know if this is for all HL3 kids, but as Frankie gets older he is just like every other kid.  What I mean to say is he isn’t reading high school level books simply because he taught himself to read at 2.  He is still ahead and very intelligent, but it’s not on the genius level.  He is more of a typical kid who is advanced for his age.  He catches onto things quickly, and the kids in the class love him, and he has enjoys them as well.  He still tends to be very happy with doing his own thing though, whereas my 2 year old Noah has been a social nut since he was born.  So it’s interesting to see the differences between an HL3 kid and a “typical” kid.  Since Frankie was my first, he was just typical for me for a long time.  So, not to blab on too much, I will sum up the good and the things to work on:

Positives:

  1. Frankie is excelling in school.  He is still reading above level but only by a year or so BUT he does tend to need to read too quickly sometimes without taking the time to comprehend everything he is reading.
  2. His writing skills are still very good.
  3. He can concentrate on things that I think may be difficult for other six year olds.  The other night, he put together a lego aged 7-14 and didn’t have any issues with this.  He has the patience to sit down, read the directions, look at the pictures and build.
  4. He likes his alone time but is very loving with all of us and especially with his brother.  Noah is definitely his best friend and loves having him around.

Things to work on:

  1.  He still sims or “hums” as we call it when he gets excited about something. It is something he is aware we need to work on and correct simply because we know that other kids will begin to wonder what that is about.  It has lessened over the years but is still there.
  2. Transitions are much better, however, change is not so much.  Before, if he was warned of a change, it didn’t always help him to complete the change or transition, but now as long as he knows it’s coming, he is ok.  But  if we forget to warn him then he is not having it.  So it gets easier with that, but be warned, they still need to warnings.
  3. Frankie’s speech is where it should be although I tend to notice he still uses the tones he hears on tv and movies. So he sometimes emphasizes things that we wouldn’t do in a normal conversation.

Not sure if I am forgetting anything but please feel free to message me anytime.

9/10/2016

Well new and good things to report.  I have been very anxious knowing Frankie will be going to first grade in a different building and starting a ninja training class on Saturdays.  I am happy to report that although there were a few minor hiccups, everything has been going well. He was sad the first day of school to get on the bus but he did it. He did well in school that day, as per his teachers, and although he got off the bus crying, all was well. After that, he gets on the bus, although sometimes he would like to keep playing with his brother, but always goes on good and he comes off the bus great too.  I am so happy that he is in the ICTS class because it works really well for him.  He still needs that little bit of extra attention but wouldn’t quite fit into just gen ed and definitely not into self-contained.  So right now, things seem good.  Today he went to Ninja training for the first time and now he is able to voice that he is scared, and although he had to be dragged into the gym and didn’t participate at first, he realized it was all stuff he loved to do and he loved it! Of course, you can guess, he didn’t want to leave and when the other kids ran out to their parents, Frankie was being carried out lol  But after telling him he wouldn’t be allowed back, he said he was sorry and came out.  He was sad about leaving though. But all in all, it’s been good.  His “hiccups” become shorter and less severe as he gets older.  I will post some pics of his ninja class.

Keeps up to date on American Ninja Warrior

Scares the crap out of mommy with his love for rides!

Loves our Emma

No matter where we go, Frankie always has to read about it 🙂 #adventureaquarium #hl3

9/2/2016

Soooo, another school year is here and another orientation. I had anxiety for weeks but good news! It went really well!! He was shy and hesitant when we got there but when the kids had to go to their classrooms to see their new class and classmates, he went pretty willingly.  I was so thrilled and holding my breath lol  I don’t know if I have said this before but Hazlet has its schools split up in different buildings. So they all start at one building but when they get to grades 1-4 there are three separate buildings.  He is zoned for the one around the corner, but will be attending the one a few minutes away because they are offering the class I fought for (one gen ed teacher and one special ed teacher).  One of the toughest things when dealing with an HL3 child’s education is their being placed into the right class. Frankie does not fit into the smaller self contained classes because cognitively he is ahead, but he still has transitional issues and small behavioral problems, some anxiety, so he can’t just be thrown into a gen ed class with one teacher.  The best fit for him was the two teachers.  And it’s so great to see how much he changes every year.  Like his case worker from the last two years said to me yesterday, Frankie has his issues but he makes great strides every year and that’s what’s so great. He really does.  He does need certain considerations, but that doesn’t mean he should just be characterized as autistic because it makes it easier for the state and the schools.  However, although I have had my difficulties with the schools understanding HL3, they really have been very supportive and they feel more like good friends than social workers and administrators.  I am going to miss his child study team that I worked with the last two and half years but I look forward to working with his new team and the great thing about Hazlet is it’s small so they all communicate and work well together.  So I will keep everyone posted, but like Dr. Trefert and Phyllis Kupperman have said, they do continue to get better.  Frankie is such a great kid and although this process has been extremely scary, Frankie is who he is because of HL3 and that’s ok.  I hope this info helps you all as much as it has helped me 🙂

8/5/2016 cont…

Oh and July 24 was Frankie’s 6th birthday!! We got him lots of balloons and we went to an amusement park. He has also started to make Lego cars for the 7-12 year old models.  He reads the instructions and builds the cars. It’s so great to see him complete them.  And his favorite show is American Ninja Warrior and he can tell you who they all are, what city they competed in, where they fell out in qualifying and the finals all while spelling their names with my label maker and color coding them by cities. I will post pics 🙂

 

8/5/2016

It’s been a good summer so far.  Frankie attends ESY (extended school year) since he has an IEP (individualized evaluation plan).  However, this year we had to try and tackle CCD (we are Catholic) and since Frankie goes to public school for the resources, he doesn’t get religion.  So two of his friends were signed up for a week long summer program and then four times for the year.  I thought this would be perfect because I just don’t see him going every week.  So, I had anxiety about it for some time.  We drove by the school to let him see where it was and what it looked like.  Normally, his ESY day is only 8:30 to 12:30 and not Fridays but this would be one week 8:30 to 3:30 for five days. I was preparing myself that he would never get through it.  Well, the report is both good and bad 🙂  He went in ok but he did cry each morning.  He didn’t want to leave me.  However, he did wind up going into the class and they reported he did well the whole day.  HE did however cry when he saw me even though he was happy to see me (not sure what that’s about).  So, I’m happy to say, he did finish the week and he learned a lot which I was happy about.  One thing I had to laugh at was I walked into the back of the church where the classes would finish each day and I looked at his class and didn’t see him.  Then all of a sudden I see his two little feet go slowly into the air…he was slumped so low from boredom, he decided to raise his feet lol  I had to laugh because he was there for so long and they prayer service took quite some time at the end of the day.  He wasn’t being disruptive, but he was just being a kid.

He also enjoyed his weeks at ESY.  First day was tough because he didn’t want to go and made a scene going in and then getting on the bus, but thankfully the guy in charge of special ed in Hazlet was very good about it.  I was not, however, happy with the bus driver and aid because they were very bad with him when he did not want to get on the bus.  They were obviously not trained to deal with this.  I spoke to the special ed administrator and he apologized to me and reprimanded the two on the bus. The funny part was Frankie was great after that.  He just has to get over that hump.  It’s just the way it is.

6/30/2016

I’m home for summer vacation now so I hope to have more time to post. Frankie’s graduation was good and bad, but bad in a funny way.  I kind of knew that he was not going to fully cooperate with the performance, but I tried not to worry.  Well, they opened the curtain and about 50 kids were on stage and….no Frankie lol  He was on the side of the stage crying that he didn’t want to go on.  At first I was sad about this and of course a little embarrassed, but really, he just looked like a kid who had stage fright.  And I think much of that was.  I was a rule follower no matter what so even when I didn’t want to do things like that, I would do it because I felt I had no choice.  But Frankie when scared just doesn’t want to do it and he lets us know.  The para assigned to his class was wonderful and sat with him.  He sat on the side of the stage with her and then about the fourth song, he made his way with the rest of the kids.  It was actually very cute and funny.  Then he wouldn’t take his diploma and picture, but he did sit really well with everyone and enjoyed the slideshow and rest of the graduation.  It wasn’t perfect, but it was good.  I will post some pics.

6/11/2016

Frankie’s kindergarten graduation is this coming week.  It’s amazing to think how far he has come.  When he started school halfway through PreK 3, he was not speaking, but of course reading and labeling.  PreK 4 we learned about HL3 and he progressed more and more that year.  And now he will be six this July and heading to first grade.  This is not to say that I don’t get frustrated, as you all have read, and sad at times that things can’t go more smoothly, but I have to remind myself how far he has come. His music teacher has already warned me that graduation may not go smoothly. He has his days when he is happy to go on the stage with his class and sing and there are days he wants nothing to do with it. It’s going to be touch and go lol But I think it could be that way with any kid.  He just gets scrutinized more.  But I have high hopes it will go well. I will post pictures.

5/17/2016

Field day started badly for Frankie. He refused to wear the school shirt. How far do you push him is what we keep asking ourselves. We don’t want him to get his way but we also want to choose our battles wisely. He gets to the point where he is so frustrated he is screaming and we just don’t know how far to push. And once he is twisted, then he goes into talking the opposite. We say the sky is blue, he will say it’s green. We say be good and he says he wants to be bad. This may sound like any other stubborn, spoiled, but Frankie has hyperlexia, therefore, he will be scrutinized. And then I feel worn out. Luckily today ended well. He didn’t wear the shirt on the field, but he did have a great time. So I remind myself to stop and breathe. I tell Frankie the same thing. And pray 🙂 Here’s some pics 🙂

4/25/2016

It’s been a few weeks since Frankie has been in the in class support class full day. It’s been going well. I created a book for him to prepare him before it happened and I think it helped with the transition. He is sometimes saying he doesn’t want to go to school but as far as I can tell and from what the teacher tells me, he is doing very well there. What’s interesting and tough at the same time is that change is just not easy for him. The school would say transition, but I look at it as change. For example, he seemed out of sorts last week and we couldn’t figure out why. He acted up in his gym class which is something he hadn’t done since last year. I spoke to his teacher and she told me that they have been in and out of the classroom a lot because of IEP meetings and one of the paras was out for a week with a sub in her place. I don’t know if this is the HL, because I know I never liked change, but I can only figure it out that it has to be about his speech. I think, from my experience with Frankie, that he because he was behind with speech, it gave him some fears because he couldn’t communicate like others. I noticed those fear subside more as his speech came in. The school would like to just simply chalk it up to autism and that’s why he couldn’t speak and that’s why he had these autistic like behaviors, but I know better now. Not only because of everything making so much sense from Dr. Trefert’s research but from my own observations of Frankie.

This is definitely a journey. There are times when I almost forget the problems Frankie had in school and with speech and then there are times he still does things that remind me of the worse times. Frankie still has a tendency to “hum” as we call it. It seems to be when he is happy and we have to remind him to use his words which is he able to do very easily now. Today Frankie got a new chair for the playroom and he cried about having to lose his old one. I don’t know if this is simply him being a kid, the HL or both. But since this blog is my journey with Frankie, I want everyone to know that it’s up and down, but far more ups than downs. Frankie has come such a long way. I want parents to remember that even as they get better, it is still a journey of learning and worrying, but really isn’t this what every parent goes through no matter what the issue? I have friends whose kids had no issues as babies and toddlers and now things are popping up. This is life, but I hope by listening to my journey with Frankie, it will help all other HL3 children and their parents have hope and the correct help that is needed.

3/26/2016

Sorry it took so long to update.  Being back at work takes up so much of my time that I don’t get on here as much as I would like. Good news, we did have a really good IEP meeting last week.  His team has agreed that he should be in the mixed gen ed/special ed class all day.  He went from one class to half a day in January and now full day.  He was spending a lot of time in the smaller self contained class.  Looking back, I should have trusted my instinct and just made them put him in the mixed class full day from the beginning but I didn’t and I think it was a waste of time for him. Cognitively, he is very much ahead and is not challenged enough in that class.  This is a major problem for HL3 kids.  The smaller groups are nice for them to open up but it’s not a good place for them intellectually. They thought the mixed class would be a lot for him and this just wasn’t the case.  He adapts fairly quickly and thankfully, he loves school.  I never realized how many difficulties come along with having a speech problem.  All of Frankie’s issues really stem from his lack of language.  As the language gets better, so does his behavior and his social skills.  But everything was a slow process and that’s easy to forget. I NEVER thought I would be able to have a conversation with Frankie and here I am almost forgetting how behind he was.

 

2/10/2016

This is Frankie in his class today. It is an ICTS class where there are both general education and special education. HE is happy, outgoing and adjusting well.  THis is a hyperlexic 3 child who has been put on a spectrum which will help him in no way other than making the school’s life easier by having a recognized diagnosis.  THis is the face of HL3, not ASD.

 

2/10/2016

I just came back from a sick visit for Frankie’s little brother and I had to post. I can’t believe how outgoing and most importantly, talkative Frankie is. He was talking up a storm to this doctor he had never met before. When I told her he was speech delayed and didn’t talk in full sentences until he was four, she literally looked shocked. He wouldn’t be quiet lol he talked about school and his brother and his favorite shows,all without being prompted. This reminds me why it‘s so important to spread the word about hyperlexia3. It’s a matter of proper diagnosis. It’s about helping parents be able to properly help their children. It’s not a matter of separating from autism. It’s about knowing what your child has and knowing how to help them and what to expect. It’s about knowing so we can teach the schools that hyperlexic3 kids shouldn’t just be put into the spectrum as ASD. I used to think Frankie would never catch up. I used to worry he would never be able to function on his own. But he is a smart, friendly and talkative kid who is really advanced in so many ways and catching up in the others.

 

1/10/2016

Happy New Year!! Busy over here as always and I wish I had more time to write.  Sometimes it’s difficult to bring myself to write anything because when the days are good I want to savor it and when they are bad, I sometimes just want to crawl in a hole and forget about it.

On Friday, we had an IEP meeting for Frankie.  We live in a small town for the most part and it’s very easy to talk to the head of special ed or the superintendent.  They all know me at this point and I have definitely acquired the name of crazy mom.  One of the bad things about being a teacher myself is that I have little to no tolerance when dealing with a school or a district because I know what they try and pull.  Right now Frankie is in part day self-contained and part day gen ed/special ed mix.  This is where most of you will probably encounter problems as we have.  HL3 is very hard to place at this young age.  It’s like going uphill and not seeing an end. As Kupperman has written, HL kids will do better in the smaller classes because of their speech delay but the kids who usually wind up in the self contained are kids with cognitive issues.  HL kids this is not the case. If you put them in the bigger classes, they shy away and sometimes get fidgety and distracted easily because they have the speech delay. There is no happy medium for our kids.

My mom and I wound up arguing with the special ed team we work with at his school because after all this time, they still do not look at the HL for what it is. All they see is the ASD.  Yes, the approach is many time the same, but the child is not. They refuse to see the speech delay as being the core of so any of the other issues.  Even writing this, I want to scream. They will begin transitioning Frankie into the mixed class more starting tomorrow. He is probably not going to love it. HE doesn’t like change and transition.  They will say it’s the ASD. I say it’s because of his speech.  He loves kids but if you don’t speak the language like others, you are afraid of what will come next.  I try telling them this all the time! I know a little Spanish. I would be terrified if I had to live in a world where I only knew pieces of a language. I would depend on the routine of things to feel safe. Why these people cannot see this is beyond me!

11/25/2015

New video of Frankie! This is from today and it’s him playing with a math game we got him.  He is five years, four months as of yesterday.  This time last year the language started to spill out more everyday.  Never thought it would.  Now, he talks too much at times 🙂

10/27/2015

It is now two months into the school year and I had to go to Frankie’s parent/teacher conference.  His school seems to be trying very hard to meet his needs in terms of needing the smaller classes, but also gen ed.  If your child is HL3, something I want to stress, which I have in the past, is that our kids are not easy to accommodate.  Not because what they have is strange, but because they are unique.  Frankie is very intelligent, but he has these little things that need to be addressed. I say little when a few years ago, I used to think he may never have a “normal” life.  It just felt like when he started talking, so much changed.

Anyway, I have gone off track.  My point for this entry is to tell you I had a GREAT parent teacher conference, which is an absolute first for me. His behavior is getting better, he is answering and asking questions in class and he is talking more to the kids.

I have always believed that Frankie was hindered socially from his speech and NOT that he is anti-social because he is autistic.  It’s frustrating when you know what your child has and they refuse to acknowledge it for what it is.  As he continues to grow out of the ASD characteristics, it makes me want to scream that people will not recognize HL3.

For those of you who have felt like me, how they may never be better, and feel badly because all the other kids are talking and not needing IEP meetings, and doctor visits, etc., it makes me laugh when I hear about the other kids in kindergarten who are just learning sight words and writing words. Frankie really was doing this since 2 and 3 years old.  It amazes me even more now when I see that he taught himself these things.

This also worries me because he is way beyond the curriculum now.  His homework is very simple for him.  He counts to 100, can do addition, writes, reads….but his behavior is what holds him back.  Again, he is soooo much better, but they want perfection. They want 100% compliance 100% of the time.  Frankie may never be that way.  However, I am just thrilled that he is healthy, smart, and following the path that Dr. Treffert said he would.  And if this blog even helps one parent or HL3 child out there, I will feel what I went through with Frankie, the not knowing about HL3, was a blessing.

10/12/2015

Today we went for holiday pics in the park.  Frankie was very good and patient.  He has the silliest smile and they look forced, but he tried really hard lol  He takes great pictures when they are candid or I can get him to truly laugh.  Some say this is one of the ASD traits that they don’t love taking pics, but I was never sure about that. He was good with pics for a long time, then at about three, he became more of a pain, not wanting to sit or smile for them.  I still think part of that is being a kid.  I used to hate having to sit and pose, so why would he be any different?  He talks so much now, we really take it forgranted.  For years, I thought he would never be able to live a normal life, or would never be able to hold a conversation with me.  Now he says things that just blow me away.  Of course he is still behind the other kids, but it doesn’t bother me anymore because I know the leaps he has taken.  So tomorrow he goes back to school after the long weekend and we will see if he behaves himself.

He likes to say the opposite and we are trying to get him to stop.  His school has already broached us taking him back to the neurologist to see about that, but I refuse to look for another diagnosis when I believe it’s just him being a pain in the butt.  Sometimes I want to scream “NEWSFLASH! Kids will be kids!!’

 

10/10/2015

Hi all! So sorry it has been awhile. I just went back to teaching in September and needless to say, it’s hard adjusting after being home with my second little guy after being home for a year. Thank you for checking in and I really hope this helps all of you because I know what a blessing it is to have people who can be helped by the journey we are on.

Frankie has started kindergarten. It was a bumpy start. We went for orientation in early September and he wanted nothing to do with it. I was dreading the first day. However, it’s important to remember that our kids have trouble with transitioning and adjusting to new things. Even though he had gone to the summer program, it was a change for him going everyday from 9 to 3:30 every day.

He has been getting better and better however. He also continues to surprise us with new things like going on the bus! He refused the bus completely for the longest time and this year, went on with no issues.

A warning about school and out HL3 kids though. It is very difficult to find the right spot for them. They benefit from the smaller classes but usually the smaller, self contained special ed classes are for those kids struggling academically. This is not usually HL3 kids problems. He comes home with work like writing numbers and letters and I’m like “he’s been doing this since he was 2 and 3!” I stay very on top of them and he is now doing half day special ed and half day inclusion. This way he is experiencing different settings. Sadly, he is also ahead of the gen ed classes too. He really could be in first grade, however, his behavior is the issue. He does not like to always listen and in a world where schools want kids to be compliant and cookie cutters of each other, Frankie is an issue for them. He does need advance warning with certain things and he needs things written sometimes to fully understand. However, he talks all the time. He is a good boy who is very sweet. Everyone in the school loves him, even the other kids who have been talking way before him.

For the school, everything Frankie does is because of his “diagnosis” but too bad he doesn’t have the right one. Once you’re on the spectrum, that’s their answer for EVERYTHING! It isn’t just, my kid is bored, or he is stubborn. It’s the spectrum.

The funny part is his speech is no longer my worry which is crazy really since that was the major problem. He is still behind his other classmates who have been talking since they were 2. But it’s CRAZY how much he talks now. I will videotape him so you can see what I mean.

I will keep updating more regularly now. I just started a librarian position in my school instead of English teacher so I have a little more time. Please let me know if you have any questions and I hope this helps. God Bless!

8/1/2015

Unfortunately, for HL3 children, any issues they may have with social situations get better last.  For Frankie, any social issues are due to his language problems.  I like to think of it as if I was to walk into a room where everyone is speaking Russian and my first language is English.  I’ve become much more comfortable with the Russian language, however, I am a novice in a room of experienced speakers.  I am going to be intimidated because I am not always going to understand what comes next.  This is what happens for Frankie sometimes.

The “experts” call it transitional issues.  Yes, maybe that would be the word for it, however, their easy way to understand it is to say that’s a spectrum problem.  Even if it is, it still stems from the language issue, not from Frankie’s inability to interact in various situations. Once Frankie gets past his initial uncomfort in new situations, he adjusts just fine.  At just turning five, he still experiences this from time like today.  Frankie loves Bounce U, but today Bounce U was cosmic 🙂   He didn’t quite get why it had to be that way and it made him a little anxious.  He did, however, join the kids eventually and play along. A year ago, he would have probably had a meltdown.

So just know that although HL3 kids continue to get better, much of what they do is in direct effect to things they must deal with like speech issues. The way I have dealt with this in the past, like I mentioned before, is to have Frankie read about a similar situation because HL kids learn best when reading.  It just makes things click.

Frankie never had much of  a problem with being overly obsessive about things, but he does like routine.  This causes some transitional issues.  For example, when he started ESY (extended school year) back a few weeks ago, he had to go in the front door because he will be going into kindergarten, whereas, he used to go in a side door with the Pre-K.  Although he was hesitant and a little resistant, with a little prompting, he went.  A year ago, it would have been a much bigger problem and I think it lessened when his speech picked up.  Now, although he does talk all the time, there are still things that he needs to read to fully get something at times.  It’s interesting, because we know he understands everything we say, but yet there are times he needs a book to help.  This is where HL3 kids are different than other children they are compared to on the spectrum.  Autistic children need visuals many times, but they aren’t reading the visual. They need the picture.  Frankie actually has to read the words.  Whether the picture was there or not, he needs to read it. That is a big difference and try to remember that when you deal with the schools.

Frankie never had much of  a problem with being overly obsessive about things, but he does like routine.  This causes some transitional issues.  For example, when he started ESY (extended school year) back a few weeks ago, he had to go in the front door because he will be going into kindergarten, whereas, he used to go in a side door with the Pre-K.  Although he was hesitant and a little resistant, with a little prompting, he went.  A year ago, it would have been a much bigger problem and I think it lessened when his speech picked up.  Now, although he does talk all the time, there are still things that he needs to read to fully get something at times.  It’s interesting, because we know he understands everything we say, but yet there are times he needs a book to help.  This is where HL3 kids are different than other children they are compared to on the spectrum.  Autistic children need visuals many times, but they aren’t reading the visual. They need the picture.  Frankie actually has to read the words.  Whether the picture was there or not, he needs to read it. That is a big difference and try to remember that when you deal with the schools.

 

7/27/2015

Frankie did have a great birthday and his party on the 18th was a lot of fun.  Thankfully, although Frankie is still behind in conversational skills, the kids in his class all love him.  Although the day was a lot of fun and Frankie has made so much progress, for those of you following this to kind of know what to expect your little one, Frankie still had some problems that day.  The irony is it’s no longer his speech, but his behavior. He loves bounce houses and was very excited for the party.  He was even giving hugs and playing in the front room before the party started.  However, once we had to transition into the bounce room, he did not want to go.  And as much as he talks, he can’t really explain why. He did, however go in, and it took him a little while to warm up, but he did and then he had a blast.  THEN 🙂 we had to transition to the other bounce room. He didn’t love that idea either and then had to warm up to that.  By the time we got to the third room where the cake was, I was worn out lol  It is frustrating as a parent who knows their child loves something be held back from it.  As I have read from the many articles, this is something that HL3 kids will do.

Please don’t think I’m telling you this to frustrate you or make you think that it’s a problem that can’t be solved.  Like with any behavior (and all kids have their problem behaviors) he needs to work on it.

Like I’ve mentioned before, HL3 kids need to be prepared, and that’s not always easy to do.  If I had a book for everything Frankie would encounter, I would be thrilled because he needs to also read about those things for him to be more accepting of it.  Thinking back, I should have had Frankie walk through the place before hand and explain. But I learn as I go.  🙂

Frankie’s behavior improved in school so quickly after I read him the Julia Cook books.  Although I had spoken to him about behaving better and listening, it took him reading and seeing it to really get it.  What I tried to accomplish in months by talking to him, I accomplished in a few days with the books.

So my advice is always prepare.  If you can show your HL3 child first, it will probably prove a much easier transition.  I am also going to keep listing books that will help with these issues as I come across them myself.  🙂

7/24/2015

Yesterday was Frankie’s 5th birthday 7/24/2015. I can’t believe the change in him from last year. We hung out a lot together the past two days and it was the greatest of fun. He was drawing and writing sentences and telling me all about what he was doing. We laid on a hammock in my yard and shared wonderful spoken and quiet moments together. When his mom was going to pick out a birthday cake with him he came over and said Mema will you come with me. This was something Frankie would never had said a year ago, not that he didn’t want to but didn’t know how to. For me this was the greatest birthday present God could have given him, the power of conversation. If you have a hyperlexic 3 child I hope our pages will encourage you. Dr. Treffert is a wonderful man who encouraged me and everything he said is beginning to come true for my Frankie..

7/16/2015

Today my mom and I had to laugh. We were at Toys R Us because Frankie was being rewarded for good behavior. When he began to complain that he didn’t want to leave and talked back to my mom, she caught herself saying “you better be quiet”.We thought back to how much time and energy was spent worrying about Frankie and his lack of speech and how happy we are now that there are actually times we forget that ever happened. He talks so much more now. If only we had found Dr.Treffert and Dr. Kupperman a bit sooner or if the so called professionals knew more about hyperlexia especially sub-type 3 we could have worried less and helped Frankie more. Our goal is to help as many parents and grandparents avoid the pain of not knowing where their hyperlexic 3 children fit in.

:) (Frankie will be five July 24)

7/13/2015

Frankie will be five July 24. For those of you with HL and HL3 children, you will know what an important year 4 years old is. HL’s many times will have a “language explosion” between the ages of 4 and 5. This is very true. Frankie was still only putting two words together when he turned four and as the months went on, more and more language started to come out. It’s amazing how much he has changed in the short year. However, don’t be discouraged if your child is around 4 1/2 and still not as verbal as you would like. It’s still a gradual process and it’s not like Frankie just went from two words to ten. It gradually grew over the year. He only just started asking where and why questions. So don’t be discouraged. Just have them keep reading, reading and more reading  🙂

66 Replies to “Updates on Frankie’s Progress”

  1. We have only yesterday come across the term hyperlexia type 3. I’m so happy to have found your blog. Our son Austen also fits Dr Trefferts description of hyperlexia 3 and sounds so similar to your little Frankie. We are hoping this is the answer to all our worry and confusion

    1. Hello! I am so happy this blog helped! I know exactly how you’re feeling and that’s why my mom and I started this blog. We were totally in the dark about HL3. It was only this year, after another difficult IEP meeting that my mom looked up hyperlexia because Frankie’s speech therapist had brought it up when he was three. But at the time, all we thought was it meant he was a visual learner. We had no idea what it really meant! At one point we were trying to take his books away from him because we thought he would never talk. Some people have said to me “if Frankie is getting services, then why fight for HL3” and my response is that as a parent, you want to understand what is going on and that they are getting the correct treatment. Right now on Frankie’s IEP he is simply labeled as autistic and they wouldn’t even put “with hyperlexia” because they said the state doesn’t recognize it. Can you imagine?! HL3 is very specific and they learn differently. It’s not ok for them to simply throw these kids on the spectrum. Even if it is HL2, they still learn from reading, so HL should be a recognized diagnosis. I’m sorry for rambling. I’m so thrilled that this has helped you. Please let me know if you have any other questions or help with anything xxx 🙂

  2. I came across ur blog after reading Dr. Treffert’s article
    One word “excellent”. My son is much like Frankie. Loves books letters, numbers, shapes even the difficult ones trapezoid parallelogram etc and has known them before he was two. He just can’t seem to put a sentence together. He’s loving and has excellent eye contact also. He turned 3 in March. Its a releif to find someone who is willing to chart their child’s progress to help others. Keep up the good work.

    1. Hi Ms. Gibbs 🙂 I’m always so happy to hear that this website is helping. And thank you for saying how well it is put together because I literally taught myself in May and I’m still learning along the way lol My mom and I had the idea to do this because we not only want to help change the medical community’s views on HL, and want them to acknowledge the three types, but if we could help even one family to better understand their child and what to expect, I will feel I helped. I made so many mistakes before I knew what HL was. For some time, I tried to take away Frankie’s books because I thought he would never talk. But once my mom found Dr. Treffert, I was able to understand what was happening with Frankie and through Phyllis Kupperman, I was able to know how to continue teaching him and helping him in school. Your little guy sounds like Frankie. Frankie was the same way with the shapes lol It’s so cute when they know such things 🙂

      Frankie even at three years, 11 months could still only sometimes put two word sentences together. But I noticed right after turning four, it slowly became better and better. By four and a half, he was talking in full sentences but still had a lot of pronoun reversal. Within the last few months (4 years, 10 months) he started asking some where and why questions. Apps helped a lot with understanding and using questions. So don’t worry. He sounds like he is following the same pattern as Frankie. Frankie will be going into kindergarten in September. It’s so interesting because they don’t even think his speech is an issue anymore, but because of the HL, he has transition issues. He needs to read certain things, like doing circle time, it finally clicked for him when I found a book on it. He needs to read it to really get it. But don’t get me wrong. He understands everything and has conversations much more easily now. Please let me know if you have any other questions. I would read Kupperman’s articles too because although she doesn’t stress the three types, she gives great techniques on how to help our kids. Her main point is to have them read, read and read lol

  3. Thanks for your response. It makes me feel hopeful and I eagerly look forward to the four year mark. Lol. Currently our Ethan is in speech therapy and has an aide in his daycare for 3 hours once a week. The aide helps with the visual timetable. She also comments on how bright he is. However he doesn’t like to sit still for circle time. Can you share the name of the book you used which helped Frankie with circle time? Continue the good work. You are a super mom!

    1. I use the books by Julia Cook where RJ is the main character and the one I used to circle time was “What if everybody did that?” by Ellen Javernick. I will post the links on the home page here. I never thought Frankie would sit for circle time. I used to get so frustrated because we put him in things like My Gym and he would NEVER listen to the instructors! lol I laugh now, but I was so upset by it. He would run around and do his own thing. They had the alphabet on the wall and he would have to stop and look. I didn’t know what to do. Then in the school, everything always had to be on his terms. Eventually positive reinforcement tactics worked. Ethan sounds like he will follow that same sort of pattern. When I started to notice Frankie talking more when he turned four, I didn’t even realize about his age because we didn’t look into the HL until that October when my mom finally decided to look more closely at that aspect. And the only reason I knew to look was because his speech therapist had mentioned it, but simply viewed it as a splinter skill. One thing I can tell you, I never thought Frankie would be talking the way he does. I would always be sad around other toddlers who were talking up a storm. Until he was four, it really was two word sentences, if that. He wouldn’t even say yes and no to things. Then he turned four and slowly it got better. So, if you have felt like that, just tell yourself he will get there. One super mom to another! lol (Wish I really thought I was a super mom! lol)

      1. Thank you for sharing and for your inspiration. It helps to know someone has and continues to walk the same path as do. I will b definitely getting those books and downloading those apps to help my son. Did Frankie ever make letters with his fingers and pieces of string etc. Lol. My son is doing that and making all the letter sounds. He also found a you tube French alphabet video and now recites the French alphabet (sigh) I just wish something else would capture his interest

        1. You’re welcome 🙂 Frankie will spell and draw things in the air with his finger. He also doesn’t have an obsession with the letters anymore, but he is still drawn to them. So, although he loves all sorts of toys, if he comes across any toy that has to do with letters, he will stop to look. I never saw what he would do with another language lol It’s possible, I’m sure 🙂

          It’s funny because now I can look back and appreciate more of those aspects of Frankie, whereas, when he was three and not talking yet, all of it seemed liked something to conquer or move forward from. But if I knew then what I know now, I would have just let him do his thing. All of that exploring and their “quirks” for lack of a better word, help them get to the next level. Now, I miss some of the things Frankie would love to do. He loved drawing and was very good at it, but now, he doesn’t care about it anymore. He can sometimes go awhile without books, but then thankfully he goes back to them. They have a passion and what’s sad is that as moms, we don’t get to enjoy it.

          Your little guy will grow leaps and bounds before you know it. Three is tough because if you’re like me, you compare to other kids his age with the talking. Now, because Frankie is talking more and he has all these other skills, it’s hard to believe how smart they really are.

          1. I still cannot express how happy I am to have found this blog. It fills me with such hope for the future for my little son. Happy belated to Frankie!! I can see he had a fantastic day. He is a blessed little guy.
            I look forward to ur posts. Keep up the good work. May God bless.

  4. You’re so welcome!! And thank you!! We are so happy we can help others with this. We’ll keep posting and if there are any questions, please feel free to ask!

  5. Hi all! So sorry it has been awhile. I just went back to teaching in September and needless to say, it’s hard adjusting after being home with my second little guy after being home for a year. Thank you for checking in and I really hope this helps all of you because I know what a blessing it is to have people who can be helped by the journey we are on.

    Frankie has started kindergarten. It was a bumpy start. We went for orientation in early September and he wanted nothing to do with it. I was dreading the first day. However, it’s important to remember that our kids have trouble with transitioning and adjusting to new things. Even though he had gone to the summer program, it was a change for him going everyday from 9 to 3:30 every day.

    He has been getting better and better however. He also continues to surprise us with new things like going on the bus! He refused the bus completely for the longest time and this year, went on with no issues.

    A warning about school and out HL3 kids though. It is very difficult to find the right spot for them. They benefit from the smaller classes but usually the smaller, self contained special ed classes are for those kids struggling academically. This is not usually HL3 kids problems. He comes home with work like writing numbers and letters and I’m like “he’s been doing this since he was 2 and 3!” I stay very on top of them and he is now doing half day special ed and half day inclusion. This way he is experiencing different settings. Sadly, he is also ahead of the gen ed classes too. He really could be in first grade, however, his behavior is the issue. He does not like to always listen and in a world where schools want kids to be compliant and cookie cutters of each other, Frankie is an issue for them. He does need advance warning with certain things and he needs things written sometimes to fully understand. However, he talks all the time. He is a good boy who is very sweet. Everyone in the school loves him, even the other kids who have been talking way before him.

    For the school, everything Frankie does is because of his “diagnosis” but too bad he doesn’t have the right one. Once you’re on the spectrum, that’s their answer for EVERYTHING! It isn’t just, my kid is bored, or he is stubborn. It’s the spectrum.

    The funny part is his speech is no longer my worry which is crazy really since that was the major problem. He is still behind his other classmates who have been talking since they were 2. But it’s CRAZY how much he talks now. I will videotape him so you can see what I mean.

    I will keep updating more regularly now. I just started a librarian position in my school instead of English teacher so I have a little more time. Please let me know if you have any questions and I hope this helps. God Bless!

  6. So lovely to read about Frankie’s progress, it is very heart warming. Our little fellow is just 3 and half. We are having problems with his toilet training. He hates wearing nappies and takes them off and then wees or does poos on the floor. He won’t use the potty or toilet.
    Any hints from your time training Frankie?
    Thank you
    Kind regards
    Gayle

    1. Hi! We had the exact same issue with Frankie. I was terrified because it seemed he was so smart and yet refused to either learn or understand the concept of the potty. My best advice to you is not to push him at all. Since I have summers off as a teacher and Frankie turned 4 during the summer, I told myself I would wait until that July. I started late June and about three weeks in, he had it down perfectly. There was no way he was doing it before that. Boys are usually late with potty training to begin with and our guys just don’t seem to get it until they are a little older than the “norm.” Every parent I’ve ever spoken to with an HL3 child had the same story. So for now, I would say use the diapers. When he gets closer to four, start it up again. Once they hit four, they seem to just do great with it. Three weeks and Frankie was out of diapers, using the regular toilet and didn’t need anything at night. So try not to worry 🙂

  7. Thankyou for your good advice. We will be patient and wait another six months or so and try again.
    Look forward to reading more updates re Frankie’s progress.

    Kind regards

    Gayle

  8. I have a hyperlexic child type lll age 9 and a hyperlexic child type ll age 5. My 9 year old is in the 6th grade and learns through k12 on line. My 5 year old is going to a department of defense school because we are a military family. I kept my type 3 child away from the school system because they did not know what to do with him. It is better if he learns at his own pace on line. My type 2 child needed the autism diagnosis to receive support because they don’t recognize the hyperlexia diagnosis. I just get a blank stare if I even mention it. I am always concerned for my children’s future.

    1. I completely understand your worries. For a long time, I thought Frankie wouldn’t have a functional life. My advice is just be as educated as you can on what they have because too many people don’t know and you can get some bad advice and services. Have you been in contact with Phyllis Kupperman? She deals with all types of hyperlexia. With the right help, our kids can make leaps and bounds. But it’s a journey.

  9. Its soo encouraging to read of Frankie’s progress. Our son is currently in a regular education school but private. We’re from the Caribbean btw. We had an aide on standby just in case. But as it turns out he didn’t need one. We’re just anxious for the language explosion like Frankie’s. Lol thanks for ur encouraging posts and continue with the good work

    1. I’m so happy these updates help. I know exactly how you feel and it’s a scary process. I have to tape Frankie talking now. It’s still hard to believe. I used to think it would never come. Every year there are challenges, but the next year always seems to bring improvements on the issues he had. This Halloween, after a few minutes of warming up, he went door to door with his brother, wore his costume the whole time and seemed to enjoy it. Last year, he refused to trick or treat, wouldn’t wear the costume at all. Even at school he wore the costume for the parade they hold. I never thought it would happen lol 🙂 It must be amazing living in the Caribbean! We are entering our cold season, so I’m very jealous lol How do you feel the services are for your little guy there?

  10. The Caribbean is really nice. But u miss the fun bits like snow and stuff. lol. Many of us have never seen snow.
    There’re not many services here. U usually have to pay a pretty penny for what little they have. AND many persons have never heard of hyperlexia III, or even the term hyperlexia.
    Looking forward for that video of Frankie.

  11. I’m so encouraged by Frankie’s progress. My little one turned 4 this month. I just wished we would wake up one morning and he be just rattling off like little Frankie. Thnx for the updates. Great videos and pics. Keep up the good work.

  12. So happy this helps. And don’t worry because it will come. I think it sounds like all of a sudden Frankie had a word explosion, but that’s not really the way it happened. When Frankie turned four, he had only just started to put two words together. It was like this for many months. He turned four in July. When we went for his IEP meeting that October, he was still not behaving well in terms of his transitioning and wasn’t talking much more. That’s what made my mom look up Hyperlexia. It was only around 4 and a half that Frankie really started to put more words together. I don’t think HL kids really just take off with language. It comes slowly, but the good news is, it does come. Really Frankie is still considered behind with speech, but the gap continues to close. It took until he turned five for him to initiate asking questions and he still has trouble answering how and why questions, but it gets better all the time. So I know it’s nerve wrecking waiting, but it will come. 🙂

  13. I also have a little HL boy here. He is 2 years and a half and is starting to read some words. I’m completely in love with this blog because finally I could see a HL case with more details. My son was diagnosticated as autist in december, so me and my wife are searching for the more appropriated diagnostic because we are sure there is no severe austim, he has many aspects as Frankie had. We would like to know what treatments were applied to Frankie and which he had best responses.

    1. Hi, so happy this blog helps! This journey with Frankie has been so scary and I was so misinformed for so long that anyone I can reach out to and help makes this journey worthwhile. I didn’t know Frankie had HL until he was four, after a private speech therapist mentioned the word. Even as good as she was, she still just viewed Frankie as autistic who would eventually get better. When at four Frankie was still having difficultly with speech and behavior (as a result of his speech) my mom found Dr. Treffert who changed our lives. Everything clicked after that because Frankie just did not fit the characteristics of an autistic child. There were some things he did which could be viewed as putting him on the spectrum, but he was just different. He didn’t seem Asbergers,yet he was smart. He was always affectionate, social and playful. What really seemed to help Frankie was reading. It just didn’t click for him unless he was reading. Before we knew about HL, we tried taking books away. That’s the worst thing you can do. Once I just gave into my instinct that he needed to read, I labeled things around the house. We did flash cards with the words and pictures. They will read them but that’s ok. Don’t be afraid of letting him use the IPad. HL kids are not like other kids. Some would say too much technology is bad for kids. For Frankie, it was his savior. With Frankie there was really no one thing. He did private speech twice a week. It was ok. Going to school was a major headache but it did create more situations for him to grow. My mom was diligent about working with him at home. Showing him the word cards. My best advice to you is you are your little guy’s best advocate. Don’t let any of them ignore the HL. I would bring Treffert and Kupperman’so articles with me to show them what needed to be done and how Frankie learned best. It’s slow coming but I can tell you, it does come.

  14. Hi again
    Our little hyplexia boy Austen is now 4 yrs old. We delayed toilet training him on your advice. We are now not having any success. Can you let us know the strategies you used when training Frankie.
    Much appreciated.
    Kind regards
    Gayle

    1. Hi, I’m sorry he is still having trouble with the potty training. Frankie didn’t love it at first either. We had some accidents. I took the diapers off him and just let him have his accidents. I gave him rewards for going on the toilet. We went straight for the toilet and not a potty because he never liked the smaller potties. When did your little guy turn four? Frankie had just turned four when he got it. How is he doing with talking? Did you notice that he is talking more? I think that also was a problem for Frankie with getting it. He had only just started talking in two words at that point. Don’t panic though. I have read it can take them longer, even into their fourth year. Frankie had summer school that year when he learned and he would still be difficult about it at times. He didn’t like underwear so I let him not wear them for awhile. Frankie seemed afraid of the toilet for some reason at the beginning. Does he seem afraid?

  15. Hi Austen is exactly 4 yrs and 2 months today. Yes he has had the word explosion. His expressive speech has improved beyond belief. He still gets confused with pronouns and talks in the third person but this is improving everyday. His comprehension is still behind and has difficulty responding to some questions, but if you simply the question you get a good response.
    His transitioning is still a problem at times and can have momentous melt downs which are very distressing for him and us. He is very loud and is rarely quiet. If he is not talking he is making unusual noises, I wonder if it could still be a form of stimming.

    He is very smart. Still loves letters and numbers, he wants to spell all the time. He still loves logos, credits at the end of TV shows etc and never ceases to amaze us when he reads out words that we didn’t know he knew.

    He is incredibly loving and affectionate and very protective of his little 2 year old brother, who is not talking yet. ( possibly another HL3).

    Our main concern is the toilet training is not progressing and he does hate sitting on either the potty or the toilet. He does seem a little afraid of the whole process and says that he just doesn’t like it…..so lots of wet pants and tears despite offering rewards and bribes for sitting on the potty. We have been trying on and off for two months with not one success. 😓. Any tips would be gratefully appreciated.

    1. I wish I had more advice on how else to help Austen with the potty training. I’m so happy he is doing well in the other areas though. Frankie also had trouble with the pronouns and third person for some time in his fourth year.

      Frankie also makes those unusual sounds. We call it humming. It has lessoned over the years, but it seems like when he is happy, he does it more. We wouldn’t care but him turning six this month we don’t want other kids to make him feel badly about it.

      Austen definetely sounds like Frankie, not only in the timeline of talking, but the other little quirks and the affection. My little guy Noah is two as well and him and Frankie are very close. I know with Frankie he has these unusual fears sometimes. Things he used to love sometimes makes him nervous. He still isn’t good with transition, even if we tell him. We use a lot of social stories to try and ease the fear. Did you try to have him read a book about it himself? When I have these problems with Frankie, I make a social book for him or buy one. Sometimes making my own works better because I am able to include pictures of things he will know. Like when he had to get on the bus for a school trip, we actually make books that show what he will really see and do. And then him reading it helps. I also tried different potty seats because the ones that moved seemed to make him nervous. And then once he liked one, it had to be that one. AT this point I don’t need to do that anymore and he even stands up and goes, which I thought he would never do. I will also look stuff up to see if I find anything else. Did you try emailing Phyllis Kupperman?

  16. Hi there
    I found your blog about Hyperlexia 3 and wanted to ask you few things.
    My son just turned 3 and has a spectrum diagnosis. He is very social with us and his team says the autism symptoms are mild.
    He is talking in sentences already, understands at age level, reads hundreds of words, and can answer many Wh questions.

    Yet he is also scripting books and can’t hold a conversation beyond the greeting. It feels like he wants to converse but he doesn’t know how yet. What age was Frankie when he started to converse?

    1. Hi Julie 🙂 I apologize for just responding now. I don’t always get alerts when there is a post on the site (I have to look into that). Frankie’s speech was more delayed than that. He was reading when he turned three and he used scripted language like your little guy to try but for Frankie, it was to communicate. He started two words when he turned four and by four and half he was talking in short sentences and it got better from there. The main thing with HL3 is the reading early. Some have speech issues and some don’t so it seems like most of the differentiation comes from the reading aspect. Also, they have to have taught themselves to read not just being taught. So if your little guy taught himself to read and he is having these issues, then it’s probably just part of the HL3 and it will improve as he gets older. Did you read the articles I have posted?

  17. Thank you for your encouraging words. We will persevere with the potty training but since our last communication we still haven’t had one success. We live in Australia and I will take your advice and email Phyllis Kuppermann.

    Do you have any issues with Frankie showing agression when playing with his peers. Austen is in pre kinder and can get very frustrated during group play if things aren’t going they way he would like e.g someone takes a toy off him. He has bitten on several occasions in recent times. We find this aspect of his behaviour very distressing. He doesn’t bite at home, occasionally he might lash out at his mum or brother but it is very rare.

    1. Hi Gayle, I apologize for taking so long to respond. Like I told Julie on the last post, I’m not getting alerts if someone posts here. In the future, you can email me from the home page. Frankie did and still does get frustrated easily. It was worse when he was younger. As his speech developed, he got better with certain issues but it was always a slow process. How is Austen’s speech? Frankie’s started to improve at four but it wasn’t until four and half until sentences started to come. Speech causes them to have a lot of anxiety. Frankie still has a lot and some of it is the speech and some of it, from what I have read, seems to go along with the HL. When did Austen start to read? Is his school using a visual schedule for him? They need a lot of preparing before they do things that are out of the ordinary.

    2. I just looked back at your past post and he really does sound A LOT like my Frankie. The behavior issues isn’t unusual for our guys. It kind of goes along with it. It does get easier. I was thinking with the potty, does he seem afraid of it? Frankie was for a bit. Even my younger son who is 2 and doesn’t have any issues seems afraid of it. I use social stories to try and prepare Frankie with things.

  18. Austen is now 4 and a half and having some assessments. They want to diagnose him as Autistic, the main reason is that when they observed him playing he was stimming a lot. Has Frankie reduced his episodes of stimming over the past 2 years?

    1. I’m so sorry I am just seeing this now. It’s been a crazy few months with work and I haven’t been on and these posts for some reason don’t go to my email. Frankie still sims. We call it his “humming” and it has lessoned greatly, but he still does it and it is something we have to remind him of. It happens when he is excited mostly. Frankie is 6 and a half and it is still definetely something we work on with him, so don’t get frustrated. I look at it like nail biting. It’s a habit and the more they become aware of it, the more they lesson the behavior. The good thing about HL3 compared to ASD by itself is that they have that social component and the older they get, the more that kicks in. So Frankie is aware of the effects of others and vice versa whereas kids with just ASD tend not to recognize the social cues that help them “normalize” the behavior.

  19. Hi there,

    I have a 3.5 yr old (little over 3.5) that resembles Frankie so much. First of all, you have given me hope. Thank you for that! As my son gets older he is fitting the same timeline as your Frankie boy. Most everything is on T since 2 years old. I have had my son receive SP but it didn’t seem to be helping. My son just enjoyed playing with the toys. Now I have been waiting for the school district to get involved but the waitlist is endless. They are quick to rule out or DX w the spectrum, but Ive tried to explain to them time and time again about Hyperlexia type 3 and they are clueless. What do you recommend when dealing with the school district?

    1. Hi! I love that I can you give you hope because it’s something that I didn’t really get to have because NO ONE knew about HL3. I’m sorry it took so long to respond. My boys have been going back and forth being sick. Where are you from? Every country and state is different. My best advice is to not doubt yourself, fight for what you know to be best and trust yourself. Be your son’s biggest defender and don’t be afraid to make a stink! My mom always told me “don’t make them hate you” and that would be nice, but I had no choice but to be someone they knew wouldn’t sit quietly. I am straight to the point and I make sure I know what I am talking about before I speak to them. I’m a teacher, so I know the bull, and I am not afraid to tell them like it is. If it gets bad enough, you may need a parent advocate. I had to settle for the ASD diagnosis because it was the closest I could get to getting him help. But it drives me nuts because they want to treat it all the same. My case workers know how crazy I am though so although they take into account the diagnosis, they listen to me when I come in with the research, the techniques and advice for them. Now it’s more of a partnership instead of a fight. Make your voice heard, don’t be afraid to piss them off. These people only go by what’s written in stone and HL3 isn’t yet.

    2. Oh and start emailing people about HL3. Even the superintendent of the district. I tell everyone about it. I give them this website. I give them the research. I tell them I know I’m the “crazy parent” and I will continue to be so they need to get used to it. I have a bit of a reputation now and that’s ok because I get what Frankie needs.

  20. Thank you so much for your words of strength from one mom to another. They have a way of instilling fear and make me feel my son will never speak if he doesn’t get help NOW, but then tell me I have to wait for services, etc. I will be that “crazy parent” and they see they cannot influence me to just go with what they know via their textbook. I know my son best! I am sure they will remember me as well. hahah. I will be his biggest defender for sure. April is the evaluation for services. I have started him in martial arts which he is starting to take better instructions when it is one on one with the instructor. Trying to get him potty trained which he is slowly getting an understanding of. But I am not pushing… He is starting to repeat all words I ask him too and is doing simple requests that I ask him to do fluidly. I see improvement as he gets older. Thank you once again! Frankie is such a heartbreaker and your angel! I will be in touch with you.

    1. Your little guy sounds exactly like Frankie at that age!! I used to think Frankie may never talk or he would never get to that language explosion, but they do get there. I know you probably won’t believe me now, but in a few years, you will hardly remember the difficulties he had with so many of the HL3 characteristics! And with potty training, HL3 kids take more time. Frankie had just turned four, he took about two weeks but then he had it down perfect! So don’t worry! I always tell these people, just because HL3 is not on the books yet, does not mean it isn’t a real thing! 40 years ago, autism wasn’t recognized and now one in 160 boys has it. Like you said, you know your child and just because these people get paid for their jobs, doesn’t mean they know much. Go in armed with this information and do not let them take it foregranted. And you sound like me so I know your little guy will be totally fine! HL3 kids are intelligent and personally, I think Frankie would have gotten where he is today with or without speech. I think in the long run he needed more help with the behavioral issues like transitioning and being more social with kids. He loves kids and he loves us, but the speech made him hold back of course. I always say it’s like walking into a room of Spanish speakers and I only know English. I would look unsocial too. Oh and the repeating is a normal stage for them. They get it around three. echolalia it’s called. As the speech comes in, that will fade. And I’m jealous you’re in California! LOL

  21. Too bad you weren’t here in California. I’d love to meet you both and our boys play together.

    It’s been a hard road and I just about tried to find an answer for everything. I think my family think I am obsessed, but I found a lot of answers on your website which provided some relief.

    My little guy does have behavior issues now, ESPECIALLY with transitioning. Like one that you had mentioned too was when I took him through the backdoor instead of the front door at church. He about screamed and shook the church up because he wanted to use the original door he was use to. Now with practice, repeatedly using the other door and me giving him a heads up- he is fine with either door. Socializing is tough and you are right, I cant imagine socializing with kids when I don’t know how to speak with them yet. But, it cant help but become sadden when I see him sitting alone and not playing with others. He is also strong willed and likes to run the show as I say it. He’s like a man in a little boys body. There is so much similarity with our boys its crazy. The list goes on. I look forward to speaking with my little man as you do now.

    I will be in touch once there is a new progress to report.

    Take care!

    1. I wish we lived closer too. And when you describe your little guy, it really is crazy how similar they are. That’s why it makes me so angry when they don’t recognize HL3 for what it is. I get that a lot of the symptoms mimic ASD but our kids read early and learn to talk through reading and that’s a BIG difference. They are unique and should be treated as such. They shouldn’t be treating every issue the same way because it’s easier for them. And as the speech comes, so will the social. Frankie still doesn’t initiate conversation like other kids, but not every kid is going to be crazy talkers. And kids change so much as they get older. I used to think I would never be able to have a conversation with Frankie and now it’s like he never really had an issue at all. The more you can narrow down some of the issues, like you did with the church doors, the easier it will be. Let me know how things are going and email anytime!

  22. I will sent you a pic of us to your aol email since I cant post pics of my little HL3 littleman here. I hope you get it. I hope Frankie is doing well and talk with you soon,

  23. How is Frankie doing? Haven’t seen an update from you in a while. I hope you received my email as well. I’ve got some recent updates for you too.

    1. Hi! I didn’t get the email and I’ve been so bad about getting on here. Try emailing me again and I can’t wait to hear about the updates!

  24. Hello There,

    It is great to see Frankie making great progress and thanks for updating us on his journey. It certainly is helping me with my dd’d progress.

    Did you guys get any therapy for him- in school and/or in private?

    Thank you so much once again.

    1. We started the process when Frankie was 20 months but no one knew what the problem was until my mom found a private speech therapist when Frankie had just turned three. She also put Frankie on the spectrum, however, she told us that Frankie was HL and that was the first time we had ever heard the word. It wasn’t until Frankie still wasn’t getting great reviews at school when he was four that my mom really looked into HL and found Dr. Treffert. Then we were really able to help him. So, yes we continued with private help and Frankie qualified for two days of speech in school but once we knew what HL was we were able to help him a lot ourselves. In my opinion, Frankie got better with a lot from being in a school atmosphere, with me directing them based on Kupperman and Treffert’s findings and advice, and what he learned from the IPad apps and reading. I don’t think the therapy did much for him in the long run but it certainly didn’t hurt either. I’m very happy that this page is helping you 🙂

  25. I have a 7 year boy with HL3, we are getting special ed services since he was 4. Nothing was helping him, instead he had started to ask me why am I in special services? Why can’t I go with regular class 🙁 He started to talk around 6, we traveled all the way like you. We were not aware about HL3 until a month ago. Whenever we go they refer him in ASD, no other diagnosis were given. We were so frustrated, and from our inside we felt this is different. When we heard about HL3, that is the right diagnosis for him. All of our questions were answered at that time.
    It is encouraging to read this blog just feeling like reading my own story. Kudos for spreading the word about HL3!

    1. Oh I am so happy for you! I know exactly how you feel! This is exactly why I created this website. Parents need to know about HL3 because ASD is not acceptable for these kids. By the professionals not knowing about HL3 it hinders our kids from getting the proper help. So very happy for you. Please let us know how he is doing.

  26. He communicates well nowadays. He has a younger brother, they play together. But, social interactions with peers is still limited. He has obsessed with operating systems of any electronics. Wherever he goes, if he find any computer with different operating system, he wanted to explore that. It gives me hard time… Other than that he is happy boy with lots of talents.
    Now, I have the challenge with school system. He went to public school special education class for pre-k, k and 1st grade. They wanted to retain him in 1st grade in separated class, I do not agree with that. I am exploring private school options, not yet found the right place.

    1. Where are you from again? Until he gets a little older, dealing with the schools is always a headache. Don’t let them make you think you don’t know what’s best and they do because they don’t. Those articles by Treffert and Kupperman talk about the placement of our kids in the early years is the toughest because the schools want to place them in smaller self contained classes and that isn’t what they need. They do need smaller classes but intellectually, they are ahead. For Frankie, the mixed class with gen ed and special ed and two teachers worked best. I also have a younger son and he is helpful with bringing out Frankie’s anxiousness about talking with other kids. The social will come out as more language does although I think they will tend to be on the more reserved side for some time.

        1. Ok, so don’t be afraid to use the information you know and educate them about it. It seems crazy that we would have to do such a thing, but they just don’t know everything. I had to accept the ASD diagnosis for Frankie because that was the only way to get him speech in school and the three to one para and in class support teacher. Use the evidence from the experts. Don’t let them make you doubt yourself. I went through it all and I became known as being annoying, confrontational and probably a little crazy but I didn’t care. As an educator myself, I know that the parents who are more verbal about things are listened to more than the ones who aren’t. So best advice is educate yourself on HL3, then educate them and go from there. Do not let them judge your son on the similarities he may have to other things. And you do not have to agree to things even when they make you feel like you have to.

    1. You’re welcome!! It really is crazy because we think of these professionals as all knowing, but they aren’t. And this is coming from someone in the education system. Let me know how it goes with the school and remember don’t be afraid of them. Just throw me an email if you have any questions I may be able to help with.

  27. I have only just found out about HL3 and my son is six years old but we are in the UK so Im not even sure if this condition is even recognised over here.

    He has typical Asd tendencies im told by the professionals but he’s still undiagnosed as everything is slower in the UK.

    Your blog is amazing and thank you for opening my eyes to this.

    1. Hi! Thank you so much for the compliment on the site. We are trying really hard to get the word out about HL3. Unfortunatly, you can’t get the diagnose anywhere, but we hope with the information you can get from experts like Dr. Treffert, people will be able to use it to help their children. HL3 kids like my Frankie follow a certain timeline. I know I have a lot of information on the site, but just look it over and let me know if you have any questions. I’ve spoken to many people across the world and the problem is the same all over. No one has heard of HL and if they did, they only look at it like a splinter skill of autism. Even my Frankie has ASD on his IEP in school and it’s just the wrong diagnosis. But I accepted it to get him the speech help but I educate everyone on what HL3 is so they know I don’t care what is on his IEP, he has HL3. If your son sounds like Frankie, then print out the information and let them know all about this. As long as we are educated about it, we can help our kids 🙂

      1. I posted your comment on the Facebook page and some of the parents responded without realizing you wouldn’t see it. I will post them here for you but if you like, come visit our Facebook page hyperlexia3.com and we also have a group Hyperlexia Family Network.

        Here are the responses:

        Jodi Moulder Hi Bex, I’m also in the UK & have a 5 year old son. I have not had a great experience with the NHS but that is just my experience. We are going down the private route which is expensive but needs must. Our kids are amazing & need the support to reach their full potential. Always trust your gut as we as parents know our kids better than anyone.
        Like · Reply · Message · 1 · 21 hrs
        Manage
        Leanne Beardsley
        Leanne Beardsley Like Jodi, I live in UK with a 5 year old daughter, exactly same experience. I’ve found more help within the Hyperlexia community than any doctor/therapist we’ve dealt with so far. I also write about it too to help other parents. Good luck x
        Like · Reply · Message · 15 hrs

  28. Hi,

    Good to hear he is doing well in 2nd grade. My son is also having issues like being annoyed or not wanting to listen when he goes to new places/ classes. How do you work with him for this? Or which method seems to work well for him? Verbal reminders are not effective for my son, his teacher offer earned token system that seems to work well. Making peer level conversations, understand social cues are other challenging things for him. Please share the ideas that works best for you.

    Thanks.

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