Q&A's on Jack & MERLD

I am curious about how Jack has progressed with MERLD over the years.   I am wondering how Jack is able to manage the academic load as well as social interactions based on the intervention he received.     
0-18 mon.  Developmental milestone rock star baby.  Happy.  Adorable.  Bright.  Our pride and joy.

16-24 mon. - Burnt his hand on a hot exhaust pipe.  Had to get stitches above his eye after falling face first onto a gravel driveway (ER tied him down to a board).  Discovered a cyst in his neck from a branchial cleft = at least two months on antibiotics, which we put in cow's milk often times heated up in a plastic (not BPA free) bottle in the fricken microwave.  Cyst was successfully removed from his neck after he was given a concoction to wipe his memory of the experience.  We were grateful the cyst was taken care of, and moved on.

2 years - First time someone mentioned something about his language.

3 years - New baby sister was born, noticed he regressed.  Six months after that (summer before preschool) LOTS of concern about his speech.  He had already developed coping mechanisms to cover for his speech by this time, but we were so good at understanding non-verbal cues, we remained unconcerned.  We knew he was bright, empathetic, and were so amazed by the things he WAS doing, it annoyed us quite a bit that all anyone ever wanted to focus on was language.  (If I'd known then how much it would effect his social skills, I would have gotten more active sooner.)  He was reading by this point.

3-year-old preschool - was okay.  Positive the first half of the year.  Not so great the second half, when he was expected to sit a lot more, and follow verbal instructions.  Still, no behavioral incidents, but there was an assistant teacher annoyed that he wouldn't do various things, like put his bare feet into paint.

4-year-old preschool - crashed and burned on day one (see first blog entry).  Took him out of the class and kept him home the rest of the year. *This was also the year he was misdiagnosed with autism.

Kindergarten - was day after day heartbreak.  *This was the year the school sensed we'd been withholding an autism diagnosis, attempted to get us to share that diagnosis, we refused with request to get a second opinion first, were told that was all fine and good, but ultimately the school would make the best choice for the school, GOT the second opinion by mid-year from the Camaratas in Nashville, who concluded Jack did not belong on the autism spectrum, that his diagnosis was the worst they'd ever seen, that Jack had MERLD (mixed receptive expressive language disorder), that we should be very happy about how bright and charming he is--that once he decides what it is he wants to do in life, there will be no stopping him, and then the Kindergarten Center stopped bringing up autism, but had no clue what MERLD was, so they assigned a permanent teacher's aide in the room, Jack was often taken by his second speech therapist (God bless her) out of the classroom (where she recognized he was being penalized for speaking out of turn and sent to the hallway) to join her for OTHER kids' speech therapy sessions (1/3 of the students, we were told) where he helped her by reading to the other children, and we capped off that terrible year with a final note from the aide (who loved him), "Jack was not allowed to get a drink of water today because after spending the afternoon outside at the park, he was too noisy in the hallway."  Jack had come home that day, walked straight to the fridge, pulled out a bottle of water, drank it dry and then told me he had been bad at school and that's why he didn't get water.  "What did the teacher tell you?"  "That water is for good kids."

Unfortunately, I sent that damn notebook to school with him on his last day and never saw it again.  I suspect the teacher read what the aide had written and decided we didn't need evidence of her prejudice, spitefulness and neglect.

We moved out of that school district.  We were unsuccessful in finding a Montessori that was interested in taking Jack.  I gathered local Montessori was becoming nervous at that time about becoming the alternative school for children with special needs.  "We don't have the resources for your child," we were told at one facility.  Just as well.  It would have been three hours of driving per day.

We took a chance that the area we live in now would have a school that would be a good fit for Jack.

First Grade -  There He Goes Again.  First meeting.  Note from his teacher.  I cried during the drive home from that meeting.  Happy tears.  Huge relief.  We had purchased a house so that he could attend there, after all.

There was a hiccup that October, when he got in trouble for swatting.  His teacher assured me she didn't think he was the instigator or that he'd swatted as much as he'd been accused, but he copped to all the allegations, so they went forward with the usual punishment, which was to have him sit aside with the principal at lunch.  I called Dr. Camarata in a panic... He said, "You are his advocate now.  There was always going to be a tough year..." and other things that made no sense at the time.  Looking back, I get it now.  No kid is perfect.  Every kid has something.  I had to stop fearing that the forward progress would somehow be taken away from us.  If I truly believed in him, I had to own it.  Live it.  Make it happen.  I consented to the punishment.  The ladies involved reported back, saying they almost caved because he was so pitifully apologetic about the whole thing, but the principal did not cave and to this day, he gets consistent high marks in 'respect toward others.'

Second - Fourth - Struggling to think of things, except that he was in two school plays and a spelling bee.  I know there was much more than that, but what stands out is how much every adult who worked with him at the school seemed to feel inspired by HIM.
I've had requests to keep former teachers informed of his piano recitals, ball games, etc.  They are invested in his success.

Throughout elementary, he had O.T., which ended by fourth grade, I believe, and he's had speech throughout.  He's had IEPs since 1st Grade.  His standardized test scores remain low compared to his true abilities, so it was recommended in 4th grade that he take the revised test, which is streamlined. Same grade level of content, but modified for children who take a lot more time processing written word into knowledge. It's the equivalent of providing a braille test to a blind child.  He does better with the modified test, but I don't know if he'll ever have his true intelligence reflected by test scores.

I think of my own brain (which he leans towards) and how the questions are poorly written, such that a creative brain can't help but find several answers plausible given the myriad of real life scenarios, and what with these tests notoriously known for having trick questions all over them, or those frustratingly asinine A, C, and D but NOT B choices, every question is a lot harder just because you're determining whether the test writer is a straightforward no-tricks no-frills author, or a jerkwad who loves to torture people.  Such tests for someone like me are like tossing an OCD person into a room with a floor covered in multi-colored marbles and instructing her to simply sweep the marbles up and put them into the trash.  HOW can you throw away perfectly good marbles?  And if keeping them, shouldn't you also organize them into size/color/clarity of glass?  By the time someone comes to check your work, you're knee deep on the floor in groupings while all the rest of the 'good instruction followers' have been excused for recess.  Too bad none of them will get to play with marbles while they're out there.  And I hope no woodland creatures confuse the ones they threw away for berries!  See??

Tests are stupid.

"Something a true poor test taker would say," I've often been told.

I wish I could write the standardized tests.

Jack began using noise reducing headphones in second grade.  He is also taken to a quieter place to do his tests if he needs it.  He doesn't always.  Gradually since first grade, he's had to rely less and less on redirection.  His brain wanders if he's had a lot of verbal instruction to absorb.  His speech therapist began working with him on expected behaviors so he could understand why not making eye contact creates a chain reaction of frustrations, or answering a question inside of his head still leaves the questioner in the dark, etc.  It's as if he's visiting our world and learning our customs -- each and every one of them -- like an explorer from another land.

Fifth Grade -  Transition into Middle School

We were given a choice when signing Jack up for middle school (which starts at fifth grade where we live). He could choose two of three options:  music (choir/band/or orchestra), art, or a study hall.  It was strongly recommended we go with the study hall and then choose music or art.  Jack chose art, which was difficult for me, because I was a band geek since the fifth grade, and I was also aware of Jack's strong proclivity for music.  Figured it would be an easy A for him, an area he could excel without effort, a place to make lifelong friends, but he really wanted to do art if he had to choose... and,  "He's already taking piano lessons," Tom reasoned (not a band geek).  I love art, don't get me wrong.  I was just sad he couldn't choose both, I guess.  Especially because I'd been excited when we moved here that he had the opportunity to do orchestra (he probably wouldn't have chosen an orchestra instrument anyway), and then he wasn't going to be able to take advantage of that opportunity.  Had to let it go, especially because at the time of decision, we had NO idea how well he was going to transition into middle school.

So he has had a study hall since fifth grade, which I have to admit has been very good for him.  It's not study hall as we knew as kids... a room full of bored kids in a cafeteria, rarely able to get any help if we needed it.  The educators in the learning center are like tutors.  He gets one-on-one instruction on his homework for forty minutes a day.  This has made a tremendous impact on my life as well as his.   At first it felt like a crutch, but I've had to admit to myself for his sake that it is a needed crutch... It is helping him get around until he's strong enough to go forward without it.  

He still has a bit of a limp.

For instance, if he has a standardized test (our academic bane), he takes it in the learning center room, where he's given headphones to drown out any white noise if he needs them (though this is not quite the annoyance it used to be since he's been on a healthy diet).  If he doesn't finish a test in any of his classes, he finishes them in his study hall.  No one helps him answer the questions.  He just knows while taking his exams that if that bell rings during his regular class period and he's only 2/3rds through, he will finish it later.  This has shrunken his anxiety levels at school.  It took me awhile to accept this accommodation, however.  I really wanted him to be doing everything within the same time frame as all the other kids by the time he reached middle school, but this arrangement is speeding up his gap-bridging.  

We began his sixth grade year with a meeting at the end of his first week, during which I was told time and again how much he has progressed in just one year since his first day of 5th grade.  It had been obvious to me at home, but much more reassuring to hear the professionals at his school confirm.  So if it works, I'll embrace it... until I sense he REALLY doesn't need it any more.  Then I strongly encourage him to do more on his own and he trusts me when I say  that he can do it.  He's at the maturity level where he a) doesn't seem to care whether or not there's a stigma for being someone in study hall b) wants to get stronger academically on his own c) is aware he's becoming a man and doesn't want to meet life unprepared.

Is Jack able to read non-fiction  books and write reports about what he has read?   

He's shown big leaps in this THIS year.  He still needs someone to read over and edit/translate for him before turning his writing assignments in, but for the most part, an 80% improvement if I had to guess?  Some weeks are stronger than others, depending on how much he's expected to retain in other classes.  If he's cramming for math and science, his writing starts to get way too free formed.  I've compared it to Bob Dylan's poetry.  Which, Dylan did alright for himself, so I'm becoming less and less worried.  Non-fiction is actually easier for him than fiction.  It's much easier for him to explain what he learned about a planet than to theorize the feelings and emotions of a minor fictional character in a story... but we'll get there!

Was he taught accommodation skills to allow him to master regular classes at the middle school level?  

*He was taught how to hold a pencil a different way at some point because there was concern his hand strength was holding him back.  He holds it regularly now.  Has nicer handwriting than 50% of the members of this household.  If his hand was weak, it's in large part because he rarely ever used a writing utensil as a preschooler, but could have also been diet related/muscle tone/hand eye/whatever... it's not an issue any more.

Starting as early as first grade, I think it was recognized that classroom noise distracts him, and his language at that time was still frustrated, so he would at times shout out, "Be quiet!" when he was trying to do his work.  In second grade, they started giving him noise reducing headphones.  Over time the need for these has lessened quite a bit.  The other night I told him to turn down the music he was listening to because I was trying to read and he offered to bring me headphones.  He completely understands how background noise can pull a person away from formulating thought.  If he's trying to think and can't, he can mention it to his classroom teacher that he needs a quieter environment and he's allowed to finish his work in the learning center.

He has also had excellent speech therapists over the years who have rehearsed many situations with him to help build up his confidence so that he stops faking through.  He learned through his negative pre-K and Kindergarten experiences to keep his questions to himself (because he couldn't articulate his questions properly at that time) and never draw attention (or else he'd be sent to the hallway).  He learned the guilt of not knowing what had just been instructed, ("Why weren't you paying attention the first time!?!") and his confidence suffered for it.  He is hardest on himself.  Always has been. 

His current school system has had their job complicated by having to first reassure him that he is not being bad when he's not understanding the teacher's instructions.  His time with his speech therapists helped him learn that it is okay to ask for help, or ask for something to be reexplained in a different way.  Once he learned those magic phrases, for the most part, his regular teachers have been ready with alternative explanations, either visual or anecdotal, none of them resentful of this task, but if they don't have the extra time, he is usually in a home room classroom where there is a teacher's assistant who can lean in and help him clarify.  They are also helpful for when Jack's attention wanders -- which I believe is a side effect to years of just not being in sync with the verbal world around him. He gets lulled off by his own thoughts -- MUSIC tears him away faster than anything-- and then a teacher's assistant taps him on the shoulder and brings him back into the now.
Every teacher's assistant has adored him, I should mention.  

Does he still receive language intervention?    

He does, but at this level he is mostly learning proper responses to specific social interactions.  He's in a group of other children and they rehearse social situations.  It's like taking an etiquette class.

Does he have any “associated” language based learning disabilities?

Reading comprehension at this point.  The words still dance around for him on the page, he's not completely caught up with vocabulary and so he's still second guessing the meanings of words.  This slows him down in all areas where he has to read first in order to comprehend the question and then answer, but he does very well once he's able to decode what he's read, and does remarkably well when he's given a visual aid.  Especially in video form.  If he's struggling with a concept for his homework, we Google a YouTube video on the topic and he'll watch it once or twice, then finish his homework just fine on his own.

Does Jack have an IEP with the school to address any accommodations he needs due to his diagnosis of MERLD?

He does.  It is much smaller than it used to be. Currently, three areas:

1. Jack will improve social functioning skills by becoming a better observer of typical interactions in peers/adults (i.e. perspective taking, maintaining personal space) and by identifying and generating 'expected behaviors' within the school environment in 4 of 5 opportunities. Progress will be measured by data collection,observation, and/or standardized testing
2. Jack will apply critical thinking skills in the school environment in 4 of 5 opportunities by identifying the main idea, inferring, reasoning, predicting, stating cause & effect, and drawing conclusions as measured by data collection, observation, and/or standardized testing.
3. Jack will increase organization and focus in the writing process by utilizing the grade level state standards and: a) using graphic organizers to stay on topic when given a writing prompt 80% of the time and b) show a 10 point increase from Fall to Spring NWEA

Do you do anything special with Jack at home to help improve his receptive and/or expressive language challenges?   

I'm constantly in tune with what's going on with him.  I go all over the place, from making sure he's eating right, "He seems spacey and irritable, blood sugar's dipped and he probably needs more greens," taking his nightly vitamins, doing fish oil shots with him, making him jog with me, insisting he help me make dinner, telling him he's in charge of his sister while I go to the store, adding exciting new hobbies (rock climbing) that get him off the computer, etc. -- I expect him to do things that I'm not sure most teenagers are expected to do any more, but so long as he steps up to the challenge, we go with it.  He grasps academic concepts more readily when he is being respected for his true age, I think.  This is HIS personality, though.  I have to have a different approach with my daughter.  I can be tougher with him than I can with her.  He thrives when he feels that I am trusting him with harder responsibilities.  She gets overwhelmed and closes down.  He picks up the sword and charges forward.  (My daughter is in the high ability program at her school, very strong reader, very verbal, amazes us constantly with her math skills -- recently had a friend tell me that Pick calculated all of her groceries in her head so she could stay on budget, "Almost to the dollar!" and this did not surprise me, but Pick cares A LOT more than her brother does about doing well and she can get bummed out if I push instead of reassure.)

Academically, I tell him to do his homework and he goes as long as he can on his own, but writing/reading responses always require that we sit side-by-side and do the assignment together.  He seems to respect my problem solving abilities for essay writing.  I've caught that, 'Wish I could do that,' look that I know will lead him to surpass me some day.  Role modeling goes a long way with him.  If he sees it can be done by me... he at least wants to try and get to that level.  Running, for instance.  He doesn't think he should be losing to his mom.

Part of my educational background is leading writers to the conclusions they were hoping to make, but didn't, without telling them specifically what it is they should write.  So he presents an idea to me, I turn into his creative writing therapist, he gets to where he wanted to be, and his writing skills are getting faster with each year.  *True to his cycle, when it does eventually 'pop' in, I'm confident his writing is going to be incredibly imaginative.  It will take longer for him to get there, but he will, and it will be great.  This I know, and he knows I believe this, so... we have established that kind of relationship. 

Also, I just know what words he's going to need explained, so when we have conversations or read something together, I pause and ask and he admits he didn't know the meaning, I explain for him or he looks it up and then we continue.  A year ago he was asking me a lot of questions throughout the day.  He used to not be able to ask.  Now that he's 12, I have to prepare myself for anything, and some of the questions have been far beyond what my husband was ready for.  I keep in focus how old he is and what experiences/thoughts/feelings are age appropriate, and I do my best to help him answer those questions without insulting his intelligence.

He has always loved the computer.  As I said, videos help.
He also came up with the aid of closed captioning all on his own.  He doesn't need it any more, but four years ago or so, he started asking for it, and suddenly we realized he was picking up so much material that had previously passed him by.


Do you still believe that MERLD was the right diagnosis for Jack?  

I do, but I think it is a symptom of other things going on with the body/brain communication, not the cause.  As you know from my food/nutrition rantings this last year, I don't think MERLD exists by itself as an explanation.  Something has caused the MERLD.  Science at this point proposes the three possibilities:  Head trauma, malnutrition or genetics.  As no one on either side of our families has ever exhibited these learning issues, that rules out genetics, and the remaining two options always left me unsatisfied as an explanation.  *Might I say here how much it amazes me how frustrated people get with me when I'm not happy to be given the explanation, "It just is.  Nobody knows more.  Accept it."  That is so unscientific to me, but yet it's always the same people demanding I present more scientific proof for MY theories who become mad at me for not being satisfied with the current non-existing scientific explanations on this matter.   But anyway, I used to get really angry at the ideas of head trauma or malnutrition, but the more I've learned about nutrition in this last year, the more open I've become to the probability that the answer is complex, with nutrition certainly not to be discarded just because it comes across too new agey to too many (who aren't willing to eat better themselves) ...

Missing the right diagnosis is a terrifying thought.  "Should we have started earlier?"  Probably.  Maybe.  No?  Depends on who would have been there for you.  Our early intervention educators sucked.  They were so wrong and so sure of themselves and so offended when we (I) weepily requested second or third opinions, I know we did the best we could with the resources we had in the area we lived and the limited support system we'd been dealt... But all those things were far from ideal.  Very nearly worst case scenarios --  the worst being what poor children have gone through in terms of physical restraints in the classroom, locking in closets, or embarrassing contraptions recommended by experimental therapists leaning far too heavily toward Freudian fetishism.  

I know Jack is not autistic, because deductive reasoning insists that he is not... Everything that got him misdiagnosed at age five has disappeared, been overcome, or now makes complete and total sense in relation to what was going on with his language at that time, so therefore, not autism.  

Sure, afterwards the spectrum became redefined again and again, and people reasoned, "Well maybe he's autistic-light, or super smart kid autistic flavored."   That seemed unfair, and then it seemed like science had become random science fiction in which everyone was allowed to be an expert except the parents of the child in question.
"Some of our smartest students have autism," his Kindergarten principal told me (sign the paper...sign the paper!).  "Some of them even went on to college!  Maybe Jack isn't high functioning."  (sign the paper, sign the paper)  

No more readjusting the slider on the spectrum scale to keep him on it!  He was judged at age five for things that do not exist now.  The race coordinators don't get to move the finish line out another marathon's length once the runner's in sight just because they insisted at the beginning of the race that there was no way the kid would ever finish.  

There have been years when things seemed to stall a bit and I've worried again that maybe something else more serious was going on... When the OCD symptoms showed up, I really REALLY doubted everything again.  Enough research, a year of conscientious eating, rapid and astounding results in him (and the entire family) and I feel much better.  The combination of puberty hormones clashing with a screwed up GI tract treated through a very nutritious and easily absorbed diet, and the OCD is gone.  His sleeping is the most regular of his life.  Anxiety levels down.  Conversational skills way up.  The list goes on and on, so how can I pretend the two aren't connected?  If his GI was screwed up at the same time he was supposed to be developing language, arguments have often been made that malnutrition causes learning disabilities (it's one of the possibilities listed for MERLD that I loathed).  Maybe, after all, that's what it was.  "There is absolutely no scientific evidence to that fact!!!"  I've been told... many times.  So.

Worse case scenario, my kid orders salads when we eat in restaurants and he hasn't eaten a McDonald's cheeseburger in over 18 months.  If I'm wrong, he's still eating as healthfully as the rest of America should be, and he's running a sub-30 minute 5k, when the year prior to that, couldn't make it down the driveway without yelling at the top of his lungs that it was the worst day of his life.  IF there's something else going on... what else can we do but keep comparing notes and following the latest studies?

MERLD shut the fake experts the hell up.  "Huh?  What's that?" and then you get the opportunity to explain for once, rather than have to endure the unsolicited uneducated sympathy.  But it's a worthless diagnosis academically if the school system has no idea what it is, or no means to do anything for it.   WE are very lucky.  Our school recognized immediately through Jack's test scores given by the Camaratas (their non-verbal intelligence tests) how bright he is, and then took it as a challenge to NOT FAIL HIM and his potential.  I have no idea how many other MERLD children had gone through this system, but every educating individual I've come into contact with seems fascinated by him rather than burdened.  If something didn't work, they adapted quickly.  He rewards their efforts by rising up to the occasion.

We know how awful it is when a school doesn't have the resources or worse, think they know what's going on, but don't.  Kindergarten did not care about the MERLD diagnosis.  It pissed them off, actually.  Especially his regular teacher.  What can you do? We explained what we already knew, that he was struggling to process verbal language.  It wasn't autism, so they ignored him the rest of the year and actually seemed to enjoy sending home negative notes.

MERLD isn't well known.  Maybe if it had been, we'd have gotten earlier intervention.  

It sounds as though he is able to navigate schoolwork and social settings adequately which is hopeful.

His transition into middle school amazed us all.  Again, the responsibility of having his own locker, locker combo, walking around with his backpack (movies with kids doing this helped prepare him), and he did great.  The first week or so had some confusion, but as of today, he hasn't even lost a book in almost a year.  (Used to lose at least one library book per grading period-- or a water bottle per week.)
Socially, his aloofness seems a gift. 

If you can’t fully grasp what you are reading and/or what someone is saying to you, it would seem as though your life would be a constant struggle.   

It's so tough, because you never want them to hurt, but from my perspective now, I've worried far more about it than he ever did.  Jack's most difficult year remains ages 4-5.  It has been steady improvement ever since.  It might not have always seemed that way, but growing pains, hiccups, all children have them.  He has improved, and keeps improving.  To date, his speech is no longer an issue.  He's filling in the skipped parts.

We're heading into the teen years and those are traditionally brutal for all, but he seems so content with who he is, I cross my fingers and hope what happened is that we got the toughest parts of growing up out of the way early.  If something is a challenge (Taming Hulk), we all work at it until it's no longer a challenge.  I have faith in this process.  In some areas it means he's ahead of his peers.  
It will balance out.

Also,  I have found various websites with parent support groups but was wondering if you found any in particular that you can suggest I explore?

I've met many fantastic parents, but most of the groups are for parents with much younger children. If you find one for tweens, let me know.  :)

***

Publishing this publicly.  Likely to revise it here and there.  In the time it took to write this, Jack went up another notch in personal responsibility.  Last night he made dinner, set the table, dished out, cleared the settings after, did the dishes, studied for his medieval history test, and finally checked over his sister's homework for me.  I got out of his way and let it happen.  I might be riding a pretty big high now as I click *publish*, but believe me when I say I understand the love from where all of these questions sprang.



© Copyright 2013 Angeline Larimer