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We had a very fun and busy kid-centric weekend. I often think those are the best kind of weekends, although they leave me completely exhausted.
Our weekend started early, on Friday, with a trip downtown to see Sesame Street Live. I admit, I liked the show. Cute songs, cute characters. More than anything though, I loved seeing my girls get into something that was designed just for them. Seeing their eyes light up, hearing them shout Elmoooo!! It was a little bit joyful.
I have to hand it to Chee – she was awesome. I had hung a few signs in the kitchen telling what to expect on Friday at the show. That it would be loud, there would be lots of clapping and singing. All things that tend to trigger an over-stim meltdown. I’m not sure if reading those signs helped her process what was going to happen, but like I said, she was awesome. She clapped, she got down and danced (to the Alphabet song of course), she waved Hi and Bye to everyone. She was awesome (did I say that already?). She did get a little upset the last 15 minutes. She cried on and off. But when I told her Five more minutes till the show’s over, she calmed right down and made it through to the end.
(Dad’s wearing the Elmo shirt. What can I say?)
Following The Big Show we did lunch out and then a shopping trip to IKEA, which is always an experience, and that was followed by an ice cream treat and cool rides.
We woke up to clouds and forecasted showers this morning which threatened to cancel our special outing today. But the clouds moved on, the sun started shining, and off we went – Horseback Riding at Chee’s teacher’s house. What a fun day! Chee has ridden a few ponies before – this was no pony. She loved it. She’s very comfortable around horses. She didn’t show the least bit of trepidation. This was completely unlike her sister who shrieked Noooooo at the suggestion she pet the horse or if a dog came too near. Ess did not like the animals. Not one bit.
Chee’s favorite part was feeding carrots to the horses.
I noticed on the way home that she was scripting scripting galore. She was going through entire Caillou episodes scene by scene, word for word. She hadn’t been doing that in the morning or while at the horse outing. There she interacted with the other kids, talked to them, seemed to be very comfortable. I wonder if the scripting is something she used to help get herself re-organized after being socially “on” for the better part of the afternoon. I have heard that kids will outgrow the scripting as their language develops, but that stress can bring it out again. I wonder.
Sunday is going to be a true day of rest for us. A lot of fun and busy stuff this weekend for two little girls. I They need a break.
Chee still seems to be doing okay despite her Shingles. I do think she’s in some discomfort, but not enough to slow her down. They are not getting better yet, and in fact each day they look a little worse. But I’m told to expect that.
I think about her managing all this stuff this weekend – a big, live show followed by a busy day and then a social outing with her peers and some ginormous horses – all the while having an assumingly very painful rash. That is pretty amazing. A testament to just how well-regulated she’s been lately.
I’m proud of both my girls.
I have read in various blogs, essays and articles, of parents not wishing to fix their child who has Autism, a language disorder, or is otherwise developmentally delayed. Therapies are eschewed in favor of a desire to accept the child as is. As in, this is how he or she communicates or plays or whatever. It’s different than how the vast majority of us do the same thing, but it’s just as valuable and we should accept it.
The value part of the equation is a no-brainer for me. My child, and every other human being, is valuable. Period. Valued because of their differences, not in spite of them. And for some things, I can accept that there is a difference. Hand flapping, for example. It doesn’t bother me the least when Chee flaps her hands when she’s excited or upset. Just because it’s a trait commonly connected with children who have Autism does not make it socially unacceptable. Nor do I feel it is unique to children and adults who are on the Spectrum. Maybe more common among that population, but not exclusive.
When it comes to using language and communicating effectively, I feel differently. I do not accept now that she will forever struggle to express herself or have difficulty answering basic questions. Especially when she is as yet so young and especially when the struggle is not due to not knowing the answer, but is in not being able to retrieve it. I also do not accept that she will always have social difficulties. I don’t believe Chee prefers to play alone, I think she is unsure of how to play with her peers.
What I DO accept, however, is that Chee learns differently.
When Chee first started speech therapy, my mindset was that our goal was to get her caught up. I didn’t want her to struggle in school and stand out as different than her peers.
As I’ve become educated about developmental “delays” and have grown to appreciate her differences, and observed what makes her unique, I no longer think of the purpose of language and occupational therapy as getting her caught up. I realize now that what separates Chee from her peers has everything to do with how she learns and processes the world around her.
She is an incredibly strong visual learner. Far stronger visual learner than a typical child, and far stronger than other means of learning within herself. So strong of a visual learner that at 2 years old she was spelling words. By 3 she had taught herself how to read. Read well. Above and beyond what you would expect of a child her age.
Wherein the spoken word will not completely register with her, the written word makes a strong impact. When I need to get through to her, writing it down helps. Far, far more than telling her.
It’s sort of like her brain is over-developed in this one area, but at the expense of other areas. I view my job not as to FIX her, but to help her become more well-rounded. To use more parts of her brain.
I want her to make friends.
I want her to learn appropriate social skills.
I want her to express her thoughts comfortably and freely.
If she had strong arms, but weak legs, would I not help her develop her leg muscles so that she could use her entire body to her fullest ability? I know I certainly wouldn’t let the muscles atrophy simply because she was naturally gifted at using her arms.
If Chee were diagnosed as having Dyslexia, rather than Hyperlexia, there would be no question that I would have her in whatever therapies necessary to help her overcome Dyslexia and learn how to read. Because not knowing how to read would be considered a huge disadvantage in life.
I consider not being able to engage in reciprocal communication, answer simple questions, or make friends to also be a disadvantage.
I respect Chee’s learning style, and I will work with her natural born tendencies and interests to help her acquire skills that she is not naturally picking up. Body language, for example. Reciprocal communication, for example.
Chee is not broken, and she’s not in speech therapy, occupational therapy, physical therapy and special needs preschool so that she can be fixed. I’m not signing her up for a social therapy group this summer so that she can be transformed into something she’s not.
She’s in those programs because she’s unique. Because her mind doesn’t operate in typical fashion. Together, her therapists, her teachers and me, with Chee as our guide, we are learning about her … so that she can learn how to navigate her world, to be the best possible person that she can be.
My goal is not to make her just like everyone else. I don’t think I could even if I tried. There will be others who are more socially savvy than her, better artists, stronger athletes. Everyone is gifted in some area. Just like the parent of a gifted athlete wouldn’t allow their child’s athletic (gross motor) skills to develop at the expense of their mathematical abilities, neither will I let Chee’s reading (and visual processing) skills develop at the expense of her social skills or fine motor skills.
My job as a mother is to hope for the best for my children. To provide them every opportunity that I can to be the best that they can be. And to accept them as they are – at whatever their best is.
Sometimes I surprise myself with the thoughts that run across my mind. I think I embrace Chee’s neurodiversity, but then I have a random thought that stops me cold and reminds me that I’m not yet where I want to be, where we all should be, when it comes to respecting differences.
I find it easier to love and accept differences in other people’s kids than my own. Perhaps because I’m not as vested in others’ kids. Reluctantly, I admit I find it harder to be as accepting of my own child. Don’t get me wrong, I do love, embrace and cherish her. Every aspect of her. Parts of her that are atypical, however, it’s not as easy for me to be all blasé about how great they are. Sometimes I find myself wishing she’d just be like other kids. Normal kids. I don’t really feel that way. Just sometimes I think it – sometimes for just a minute or two, sometimes longer. Mostly they are fleeting thoughts.
A couple of things this week have given cause for those thoughts to zip around my head. The thoughts have been fleeting. I don’t ruminate and feel sorry for myself and wish I had a different child. Not at all.
I’ve written before that Chee is Hyperlexic (take an early reading ability and mix it with a language disorder along with a splash of sensory processing disorder and you’ve got Hyperlexia). There’s not a ton of literature on Hyperlexia, but what’s out there is pretty good and offers excellent suggestions on how to communicate better with your Hyperlexic child using her reading skill.
Again, I’m reluctant to admit this, but sometimes I avoid trying something new with Chee. If this new and different thing works, then it reaffirms (again) that she is different. I know she’s different but sometimes I feel like I’m looking for her to overcome her difference.
This line of thinking, no matter how fleeting, needs to stop. When I do try a new recommended communication approach with her -it’s generally met with pretty darn good success. To wish against that, to wish that she would just learn “normally” like “everyone else” is plain foolishness. There is no normal in learning. Everyone has their own style.
Chee’s style is that she learns really well from reading. She gets the written word moreso than the spoken word, particularly if she’s upset.
Often when she wants something she’ll ask for it in a whiny tone and then continuously whine louder and louder. When she’s doing this, I can’t seem to get through to her. If I raise my voice to get her attention, she gets louder. If I ignore her, she persists and will get completely worked up.
Her SLP and OT both recommended that I write down Stop Whining (or whatever it is I want her to do) to see if that helps her process it. For several weeks I’ve not done that because I keep thinking she should be able to hear me and stop whining without me having to write it down. The thought running through my head that that’s the normal way to process and understand.
Today, I gave it a try. She was whining about wanting her toy school bus (that I had taken away from both her and Ess because they were fighting over it). She started in, I want bus! I want bus! I want bus! And immediately goes into flapping her hands and bouncing up and down, super dramatic about getting that bus off the top of the fridge.
So I handed her the following note.
Use your big girl voice. Ask nicely.
She immediately ceased whining while she read it silently to herself.
Then, Mommy, can I have the bus now, please? as polite as can be.
Stop fighting it, woman. She doesn’t listen well. She does read well. Yin and yang.
My new mantra: Embrace the difference. Celebrate it.
I was reminded this morning of one of the most frustrating spirited aspects of Chee’s personality. If you’ve read Raising Your Spirited Child, you are probably familiar with the concept of Negative First Reaction. Of all the traits the author describes as spirited, Negative First Reaction is the one that describes Chee the most. By a lot.
Chee is an equal opportunity negative reactor. From clothes to food to experiences, she is Miss Reluctant. Reluctant? Okay let’s be honest. She’s Miss-No-Way-In-Hell. Case in point from this morning. Last week I bought her a couple of new long-sleeved tees. I pulled one out this morning and launched into a laid back but excited super cute, how cute is this, look there’s a puppy on it sales pitch.
Chee took one look at the shirt and started, No. Noooo. No new shirt. No wanna wear a new shirt.
Oh, c’mon Chee, this is a cute shirt. And you love puppy dogs.
She grabs it from me, with great gusto I might add, and whips it across the room, yelling, I don’t want to wear that shirt. I want a different shirt.
Okay then.
This same scenario has replayed itself many times over in the House of Chee. Some of it has likely been due to her sensory processing challenges, but I don’t think that’s really it. How do I know this? Because once Chee finally experiences/tastes/wears something for the first time, she’s fine with it. So if it was true Sensory Defensiveness, I assume it would take a little more than me holding her down and forcing a pair of shoes on her feet (yes, I admit, I’ve done that, with great success thankyouverymuch).
Fortunately, Chee does not have a Negative First Reaction to every thing all the time. She’s random. I’ve tried to find a pattern, and if one’s there, it’s escaping me. She tends to go in phases. The year she was two she didn’t like any new shoes. She has gone through book rejection phases. No new books allowed at all.
Food rejections are harder to help her overcome. I can’t pry her mouth open and shovel tacos in. Luckily, Chee likes a variety of food. But when I want her to try something new and she decides to flip out and vehemently push the utensil away, I feel kinda stuck. I can’t make the same thing every day in an effort to wear her down. It took two years (two years!!) of twice a month offering her some variation of tacos (taco salad, soft tacos, hard shell tacos) before she’d finally deign to put a bite in her mouth. And now she loves them. She asks for them. I want tacos for dinner. Yay tacos!!
Negative First Reaction doesn’t have anything to do with her Hyperlexia or being “special needs.” I have a number of friends who describe their very typical kiddos as being strong Negative First Reactors. In Chee’s case, she comes by it honestly. As in genetically.
I am very quick to say No to things. Not so much food (although I was well into my 20s before I was willing to truly expand my limited palate and now I’ll eat nearly anything), but with clothing definitely. I tell my husband often, if there’s something you think I’d look nice in, just buy it, because if you ask me I’ll probably say no. That message must have sunk in because he came home with a new pair of shoes for me today that I probably would not have picked out for myself. I even like them.
Having a kid who is reluctant to try new things is not something that stresses me out. It has served us well on the playground (she avoids the high places). Hopefully it will serve her well when so-called friends offer her cigarettes, alcohol, etc. Maybe her take my own sweet time processing speed will give her the extra time she’ll need to make the right decision.
Meanwhile, I’ll hang her new shirts on the outside of her closet door. Eventually she’ll forget that she despises them and come twirling downstairs. Look! I’m wearing my new puppy dog shirt!
I have been wanting to try writing a social story for Chee. I was inspired especially by Christa and Ben at Hyperlexicon. She successfully used a social story to help Ben say goodbye to his beloved Chomper. It went so well for them, I figured it’s high time we give it a go.
A logical social story to start out with might be on the subject of Potty Training, but if the idea backfires or just fails miserably with her, I don’t want any setbacks connected to toileting. We have made a bit of progress of late. I consider anytime she sits on the potty and actually makes a deposit to be progress. We have had a couple of those lately completely initiated by her. The biggest contributing factor to that is little Miss Ess who has decided that she is interested in the potty. She asks to sit on it, usually shortly after wetting her diaper. She informs me when she has pooped. “I poop!” Chee, on the other hand, will staunchly deny having pooped despite strong (and I mean strong) evidence to the contrary. What a difference with these two. Perhaps if Ess will potty train this summer, it will be the catalyst that Chee needs. We’ll leave social stories out of it for now.
There are a few areas Chee could use some help. She has started pushing us lately when she doesn’t want to do something. I think she has picked this up from Ess to tell the truth. Only Ess does it in an age appropriate way – what you’d expect from a 15 month old. Chee is too old. At this point, it’s not terrible. She already has a story for that, though, the classic Hands Are Not For Hitting. It is currently one of her most favorite books. Often read and more often recited. Let’s not duplicate efforts, I say. Besides, a lesson we learned the hard way last summer was not to make too terribly big a deal about her hitting as it just makes her do it more. Yeah, we’ll try not to repeat that with pushing.
For the last few days she’s gone back to refusing to brush her teeth. Since her bedtime routine falls squarely in her Daddy’s lap, I’ll let him deal with that.
Garage therapy seems to be working. After I pull the van out in the morning, I leave the garage door open. The idea being the unknown is often scarier than the known. For the first few days I had to carry her to the van. Now she’ll walk down the sidewalk, to the driveway (not cut diagonal across the lawn), and hop in the van, all the while staring wide eyed into the garage saying, It’s okay, it’s okay.
That leaves us with one fairly big challenge for which a social story might just work. Getting her hair cut. Chee is solidly against it. She’s had her hair cut maybe 3 times in her 3 1/2 years. The last time was exactly six months ago. I somehow managed to trim her bangs (way too short) at home and, riding on that success, convinced her to go to the local Kids Salon to have the back trimmed. Leading up to that, we had been visiting said Kids Salon several times a week for many weeks. We’d go in, talk to the stylists, sit in some chairs, watch other kids get their hair cut, no pressure to actually get one herself though. Just getting used to the place was my strategy. It must have worked, or maybe the planets were properly aligned, because that afternoon she let about 3-4 inches get taken off the back (Chee has always been blessed with a lot of hair). It was a team effort by the stylists working that day and was by no means perfect. But the dead ends were gone, the bangs were straight, and she looked adorable.
The formerly cute short bangs are now even with her nose. The only hairstyle that I can make work is a ponytail that holds her bangs back. It’s not ideal, but it works. For now. Eventually there is going to have to be some measure of success in the haircut arena again. I’m pretty firmly against the hold-her-down-and-cut-it-while-she-screams approach.
She really likes her social story so far. She laughed her way through it the first time she read it. Now she asks for me to read it to her often. I found some perfect visuals (thank you, Google), kept it simple but made it fun, incorporating one of her favorite characters, Super Why, and the promise of a special treat from Target once her hair has been cut.
I’m too sure how optimistic I feel about the story helping to achieve our goal. Yesterday I asked her if she wanted that special treat from Target and she answered, No, I don’t want to get my hair cut. Guess I was a little too transparent, huh.
Ah well – we shall keep trying. Underneath that ponytail is a gorgeous head of hair just waiting to be unleashed.
I write a lot about Chee’s development. That’s much of what blogging is turning into for me, although I’m uncertain what I’ll ever do with it, a journal of how she is progressing through her development. It’s an unusual progression, certainly, especially her language. Her speech therapist said to me yesterday how fascinating she finds the human brain, Chee’s brain in particular, that she has mastered a very complex skill (reading) but struggles with a much simpler skill (answering Wh- questions).
I find the way her mind works fascinating. Her love of the alphabet transcends everything, down to her favorite cookies even. I recently bought Flotsam, a wordless book, as a tool to help Chee develop her storytelling skills. She’s so single-mindedly focused on words, that she often misses the pictures in a book (perhaps a literary version of can’t see the forest for the trees). A few months back I stopped reading new books to her and only would narrate a story by reading the pictures. She quickly lost interest in new books. Or she’d grab my finger, place it on the text, and say, Read the words, Mommy.
While Flotsam hasn’t become a favorite, or even oft-requested, she has taken more interest in it than I would have expected given there are no words in the book (except for the title page which, of course, she spends a great deal of time there).
Her descriptions of the pictures are very literal. There’s a boy on the beach. He’s got a camera. That’s about as far as she gets. There’s a fish and there’s an octopus sometimes make it into the story. She’s not telling much of a story.
I plug along with her though. Recently I bought The Big Red Barn and it quickly became a favorite. With its nice cadence and simple rhyming, what’s a word lover not to love? I enjoy reading it. Oops – that’s why it’s a favorite, I word read it to her instead of picture read it.
Often she is full of surprises, and shopping at Target yesterday was no exception. We had completed our usual popcorn and drink bribe in exchange for riding in the cart. Ess was desperate for popcorn but I am mean paranoid and won’t give it to her. Over in the $1 bins, I found an Elmo book about visiting the doctor. Great! Ess is madly in love with Elmo, this will tide her over. And it did, at least long enough for Chee and I to wolf down some popcorn and get it out of the cart.
Ess passed the book back to Chee. I hear her: Elmo and his mommy are riding in the car. They are wearing seat belts. Click click click. Elmo is going to the doctor. He’s going to get some medicine from Dr B–. Medicine to make you feel better. Page by page, she flipped through the book, describing what was happening in the pictures, infusing it with her own personal experience at the doctor (not at all a place she likes).
I felt more moved by the experience than proud. Storytelling is powerful stuff. An Elmo story, maybe not so much, but to be able to tell the story of your thoughts, feelings, and experiences. Powerful. It has scared me at times that she couldn’t find words to connect what she sees to what she knows and feels. I can see the baby steps happening. This feels important.
Yesterday Chee had her 2nd speech therapy appointment with her new therapist, Nancy. The first part was finishing up the evaluation started last week. I had Ess with me so my time was spent keeping her from deconstructing the office manager’s desk as opposed to listening in on the therapy. (Aside: I miss the younger Ess who sat contentedly during therapy chewing on a couple of toys. She’s a lot more work now.)
I was able to tune into bits and pieces of the session though. I heard Nancy ask Chee, When your hands are dirty, what do you use to wash them? She was looking for a soap and water response from Chee. She also asked her, What do you do with a fork. Eat, of course, being the desired response. Chee was unresponsive (unless you consider a blank stare a response) to both questions. Actually, I believe that was when she left the room and started spinning in the lobby. (Incidentally, spinning seems to be her newly-acquired sensory thing that she’s cycling though. She was never much of a spinner until the last few weeks.)
Nancy explained that in the typical course of language development, a child would wash her hands with soap and water, process it, file it away in her brain, and then retrieve it later when needed. She said it’s the retrieval where Chee is getting tripped up. She’s not tapping into that part of her brain, and it’s our job to help her tap into it.
I guess what she means is that it’s the retrieval to be able to verbally produce a response that is tripping her up. It’s not like she doesn’t know to use soap and water to wash her hands or to eat with a fork. She does those things many times a day. But she was unable to articulate responses to those questions. It’s my understanding that many Hyperlexic children struggle with answering Wh- questions.
This afternoon I conducted a little testing of my own with Chee.
Chee, Where do your shoes go?
Chee raises an eyebrow, a quizzical look on her face.
Pause, pause, pause, try to wait 45 seconds but not lose her attention…
Chee, where do your shoes go? This time I tap my foot.
“ON YOUR FEEEEEEET!!!” (Chee is very enthusiastic when she answers. This happens often. I can’t help but crack up.)
That’s right! Great answer! Okay, Chee, where do your pants go?
I get a quizzical look again, that raised eyebrow.
Again, the looooooong pause.
Flicking my leg, I ask again, Chee, where do your pants go?
“ON YOUR LEEEEEEEGGGS!!!”
Fabulous! Now, where does your hat go? I give no visual prompt.
“ON YOUR HEEEEEAAAAAD!!”
That’s right! Great job!
From there she proceeded to tell me where her shirt and her mittens go with no visual prompts.
So, I wonder, did I just help her tap into that supposedly untapped part of brain?
Later I asked her some questions about where things belong in the house. Things like ice cream, popsicles, eggs (she said they go in a pan). That particular one wasn’t going well. She always gave the previous response. So if the answer was freezer for, say, ice cream, she gave freezer again for, say, bread.
Then I thought to try writing my questions for her to read herself.
I wrote on a piece of paper, Where does cereal go? In a bowl! Where do I sleep? In a bed! Where do I ride? In a car! Fabulous!
From there I moved to sentences for her to fill in the blank. In hindsight, I think that is very easy for her. It’s coming up with a response to a Wh- question that is the challenge for her. I think. Although, she did a great job filling in the blank. Toys go in a toybox. I eat with a spoon. I drink water from a cup.
Lastly I wrote, Where do socks go? And before she could respond, I had to tend to a suffering Ess (suffering from being ignored in her highchair after she tired of catapulting food to the floor). Chee took my pen and wrote FEET under my question. Nice work!
I’m not sure what to make of all this. Clearly, I’m not a language development expert by any means. She seemed to do better with a visual prompt initially but continued on without it. Evidence of her strong visual learning style? The visual prompt with the tapping my foot and my leg. Writing out the questions for her to read.
Sometimes I’m so frustrated by my lack of understanding. I find myself looking for the magic technique for tapping (more of that darned tapping) into her mind.
Nancy’s words come back to me though. It doesn’t matter what she does or doesn’t already know, she said. It’s can we teach her?
I’ve got my money on Yes.
Before I became a mom, when I imagined the kind of mothering I would do, visions of Library Story Time, Mommy & Me Music classes, and Baby Tumbling filled my head. Sure I knew there would be feeding and diapers and sleep interruption, but those things were standard fare for the masses. We would go above and beyond. My baby and I would fill our days with our shared passion for books, music and somersaults. Books especially. There isn’t anything I anticipated with as much as excitement as Story Time at the Library.
I love reading. So it was thrilling when Chee became a lover of books (Hop on Pop in particular) at a very young age. Sometime around the 18 month mark, we attempted our first story time. I can remember writing about it to friends, laughing about her curious and busy nature, wondering how other parents got their kids to stay seated. Chee would not sit in my lap, she walked around the circle, took books off the surrounding shelves, took them out of other kids hands. She was aware of the librarian leading it, but didn’t pay any attention to her, unless she was trying to take the book she was reading to the group. I wasn’t especially impressed with that librarian so we didn’t go back.
There was a part of me that worried there was something different about Chee even then. Why *did* all the other kids sit in their mothers laps and engage with the story teller? Why was Chee the only one circling the group and ultimately decreeing an early departure? The other kids out there that are like Chee, I decided, weren’t at Story Time because their mothers knew it already and just stayed home.
I didn’t give up. We found another Story Time that was much more engaging, and the librarian assured me not to feel the least bit uncomfortable with Chee’s wandering. We persevered at this one, attending for nearly six months. I kept waiting and waiting for Chee to join the group. And in some things she did. She eventually consistently participated in the Brown Bear, Brown Bear retelling with felt cutouts of the animals. Well, sort of participated. Were the pace a wee bit slower and the other kids a tad less rambunctious, she might have been more verbally forthcoming. But for the most part, she circled the group, climbed on and off chairs, tried to turn the stereo on and off, removed books from the librarian’s stash, and so forth. Eventually I did give up. It was soon winter and I had a newborn Ess and didn’t need to risk exposures anyway.
My dreams of mommy and me classes were not so easily dashed. We endured Musikgarten and Tumblebees with similar results. The 2nd round of Tumblebees is when I finally admitted defeat. Chee could not have been less engaged. She was happy, thrilled even, to be there. Just don’t try to make her follow the gymnastics circuit. My hubby would take her to the class and by the end of 40 minutes he was drenched in sweat from chasing her around. We dropped out midway through.
You might think I’d have been disappointed at the lack of realizing a dream that I held for such a long time. Surprisingly, that wasn’t the case at all. Chee is so fabulous in so many ways, and we enjoy books and music and somersaults at home, we didn’t need a class with a group of peers and moms to share it. She just wasn’t ready for classes yet, I told myself.
Hindsight being what it is, I now realize that her behavior was likely due to a combination of her Sensory Processing Disorder and her Hyperlexia. She has made really huge strides with SPD and in general her social interaction is improving.
Can you hear the wheels turning in my head? Yep, I think it’s time to try again. Ess resurrected my dream of sharing a Mommy & Me experience. And why not have Chee give it a try again? I’m signing us up for a Saturday Music Pups class. Before that I am going to sit in one with Chee and see how she does. If she is more participatory than our previous attempts, I’ll sign her up too. If not, I’m flying solo with Ess and Chee can stay home with her Daddy.
What I am NOT going to do is allow this class to be a barometer of Chee’s progress. She is consistently making gains. She is doing awesome both in language and social interaction. We don’t need a Mommy & Me class to prove it.
Ess, however, I have no doubt that she’ll rock it out.
The wind has shifted a bit here. Things aren’t quite what they used to be. I didn’t notice it right away, but suddenly I’m aware of this new thing. A good new thing. Something I’ve been looking for, and here it is, and I didn’t entirely realize it.
Chee wants to play with me. No, wait, Chee is asking me to play with her. For a long time I didn’t realize that she should be wanting to play with me. I just chalked it up to her independent and confident nature. She was gifted, I said to myself, at her ability to entertain herself. Selfishly, this was great. I never worried about finding time for myself or getting my housework done. Chee didn’t complain if I left the room to fold laundry. Nary a protest was heard if I spent an hour on the phone with a friend. Lucky me, right?
Not really. Unbeknownst to me, that was an indicator of her delay or impairment in social interaction. I believe the exact wording is a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people. There was one huge exception to this, however, and that was with books. Chee has loved books since she was just a few months old, sitting at age 6 months through entire readings of Hop on Pop. Time and again. Whether it was the cadence or the rhymes, I couldn’t tell you, but she loved Hop on Pop and requested it very, very frequently. She didn’t exclude other books by any means, her list of favorites was long and varied, but every story time began and ended with the beloved Hop on Pop. Usually more than once.
If she wasn’t listening to a reading recitation (it was quickly memorized), she was locked in a tight embrace with it. Her well-worn copy has been replaced by a crisp new version, but the taped-together, battered version is tucked away in a secret spot. I don’t think I’ll ever part with that book.
Other than reading, she didn’t initiate the doing of anything with me. I, of course, approached her often. We sorted shapes, built Mega Block towers, stacked alphabet blocks, completed puzzles, sang songs and danced. All 100% initiated by me. If the phone rang in the middle of a Little People adventure, she never seemed disappointed if I left to answer it.
Over time as her language has improved, and her pretend play has expanded, and Sensory difficulties are receding, her interest in others is growing. She wants me to come play with her. Not just once in awhile either. It’s becoming an all-day, every day request demand.
Her play is not yet quite where it should be. In anticipation of Friday’s Parent-Teacher conference, her teacher sent home an IEP progress report in her backpack today. Under the category of social it is written that Chee enjoys playing alongside others but doesn’t engage in peer to peer play unless she has adult support.
That seems about right. Up until the last couple of months she hasn’t been even trying to engage anyone else in her play …she was content to play by herself. Before you can figure out the how of playing with others, first you must have the desire. The interest.
Interest seems to be there now. A long time coming, but it’s there. I admit to getting frustrated when she won’t take turns with me or when she shows off some of that rigid insistence on doing something the same way, every time. I check it, though. I leave my desire to follow the rules of the game and instead just follow Chee. I have to believe that now that she wants to play with me – turn taking and other forms of social reciprocity will surely follow. Surely.
Now, if you’ll excuse me, I’m being summoned. There are Princesses to rescue.
Recently, I was reminded of Hyperlexia. Reminded, I say, because I read about this disorder condition gift syndrome about 9 months ago, a few months after Chee began speech therapy. At the time, although she did have the fascination with letters and numbers and was beginning to spell words, she wasn’t reading. So, technically speaking, she didn’t have a precocious reading ability.
Things have changed. I wrote recently about some of her newest reading skills. She definitely can read. So I Googled up Hyperlexia and read a couple of articles. Yep, that’s her. No doubt about it. I can check the box on nearly every single characteristic of Hyperlexia. Not all to the same degree, but there’s a touch of each, some moreso than others. I’m not sure about the Social Interaction piece. I haven’t observed anything terribly unusual there. But then, I’m not 100% sure what to look for. The Language Development is what is most striking. This perfectly describes Chee’s early language development. Perfectly. This is from the website Hyperlexia.org.
- Early speech and language attempts were echolalic (both immediate and delayed)
- Good auditory memory for rotely learned songs, the alphabet and numbers, as well as good visual memory
- Comprehension of single words (mainly nouns) is better than comprehension of sentences
- Learning of language in chunks and transferring whole phrases into appropriate places (Gestalt processing)
- Marked abnormalities in form or content of speech including stereotyped and repetitive speech pronominal reversals: idiosyncratic use of words or phrases.
- Marked impairment in the ability to initiate or sustain a conversation, despite adequate speech.
I’m happy to say that she has come along way. Although she still has some of each of those characteristics, she’s making tremendous progress.
When I first read about Hyperlexia, I mentioned it to her then-SLP who said she has never seen it diagnosed outside of Autism, as though that settled the matter. Not yet willing to entertain the idea of Autism or ASD for my daughter, I didn’t push the subject.
I have changed. I am not so fearful anymore of labels. ASD. PDD-NOS. Communication Disorder. Hyperlexia. Whatever. She is who she is. Giving it a name doesn’t change anything.
What I am excited about though is the defining of it. The understanding. I admit to feeling relieved to find a place where she fits. I have spent a lot of time looking for answers. Maybe THIS is the answer. An answer that begs more questions.
What comes next? As a start, I ordered this book. I also plan to send a pretty thorough email to her teacher at school. Then what? Do I need to see a neurologist or developmental pediatrician to “make it official”? Does her therapy need to change? Should this affect her IEP?
I’m not trying to be obsessive and go overboard, but I would like to have a plan. Plans are good. My reading indicates that Hyperlexic children can struggle with comprehension. It seems intuitive to me that the earlier she gets intervention with that, the better. So, a plan.
Blog readers, if you have any perspective or advice to offer, I would be grateful.
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