What is MERLD?

Two of my children have mixed expressive/receptive learning disorder (MERLD).  What is MERLD? Why is so little written about it?

My children are not autistic.  Many children with MERLD, which is a communication disorder, are prematurely placed on the autism spectrum because many of the symptoms, for lack of a better word, are similar: echolalia, behavioral problems, repetitive behavior or stimming.

My son was diagnosed at age four with moderate to severe MERLD by a hospital speech therapist.  My daughter was three and diagnosed with mild to moderate MERLD through her preK speech therapist.  Both are very social, chatty kids.  But, as my now seven-year-old son puts it, “My brain doesn’t always work right.”  Both children are average to above average intelligence, as a great many kids with MERLD are, but many tasks they cannot complete at school without hands-on assistance, especially math and reading.  Both children, through intervention, are learning to communicate on their grade levels.

Think of MERLD as an “aphasia” of the brain.  The kids hear what you are telling them, but somewhere between hearing and understanding the words, things get jumbled up…the wires get crossed.  It’s like learning a new language.  You can hear someone speak it, but you “get” only some of the words and quite often respond through context or whatever you can “pull out” of the conversation.  It’s also like a stroke victim who must relearn how to speak.  The words go in, it takes a while to assimilate them, and then to find the “right” words to express what the person wants to say.

This blog and the book in progress will focus on living with MERLD.  The activities of daily living.  For example: How do you speak to a child with MERLD? Normally. If your child uses a different word than an “accepted” word in a response or jumbles up sentences, correct him.

Child:  A carrot rabbit fast runs.

Immediately say:  A rabbit runs fast. He likes carrots, doesn’t he?

And then go on.  Your child  will catch on and catch up.  Consistency is the key to learning.

I welcome all comments and am gathering testimonials to use in my book which will include expert commentary from speech language professionals.

Stay tuned.

Cie

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13 thoughts on “What is MERLD?

  1. I was so excited to find your site! I was so lost on what was and is going on with my 9 year old son Seth who we adopted from Russia Siberia, when he was 3.5 years old from a small orphanage of only 50 kids. He was one of the only boys with a true boys hair cut everyone else had a buzz as short. as they could go. Seth was a last minute referral the day before we got there. We say several boys all were clean and well kept cut nails and ears were clean so we think at least it was orphanage that took well care of the children and they weren’t just “warehoused like many are.” Seth had a smile on his face all the time. Responded appropriately with us as strangers played with us but didn’t want held too long but was fine when the caregivers did hold him.
    Seth learned English quickly in a month we knew 75% of what he said and others. By 3 months 95% of everything he said everyone could understand. By 4.5 he was reading and adding and subtracting numbers under 20.
    He did go to pre-school where he was ahead of the native speaking children on his BASE knowledge. But spoke in broken sentence and would respond to a question with one or two words only no sentence. We had him tested and evaluated and he qualified for Head Start Program for Speech Language and OT.
    Kindergarden the teacher in the beginning of the year was very impressed how well he read and did Math way above all the other kids reading at 1.5 grade level and 1. grade level for math. Still needing Speech Language . I noticed in January of that year a loss of what he could do in math he no longer could do it in his head and when I would ask him what comes after 6 he couldn’t do it where before he could. He still at 3rd grade losses and needs to be almost taught math from the grade before. Language is the same and no one has been able to answer WHY? I still with the DX MERLD.
    He has had a full evaluation and has ADHD with NO Coexisting DX of any kind, just ADHD and is on RX for that.
    We had him tested at Akron University Audiology and speech center they are who DX MERLD Severe Expressive and Severe Language Memory disorder and a Mild receptive language disorder. Prognosis per Akron U: Prognosis for improvement with these skills is good due to the number of other strengths that Seth possesses. Which they didn’t mention in the report. He also has Atypical Left Ear Advantage across multiple test and sub tests which indicates Hemispheric Dominance for Language is established in the right cerebral hemisphere (very rare) a mixed dominance for language, also DX Akron U. What I can’t find out is WHAT DOES ALL THIS MEAN, for his future learning, life, college, so on. Will he learn to correct himself or do kids like this always struggle and how much. I have a daughter now 27 year old who is dyslexia and has learn to self correct and learned how to cope or correct herself and be aware where she will reverse things. She complete college with a 4 year degree. Will Seth do that?
    If you have any information that can help me answers these question I would be internally grateful. I have searched for answers to all of this since Seth was in 1st grade when he fell to below 5% for reading and needed Chapter One reading and no longer could read a 2nd grade level as he was at the end of Kindergarden. He took all year to catch up to read at 1st grade level.
    Thanks Densie

    • Hi Denise! Thank you for your post. My only expertise is as a writer and a mother of two children with MERLD. I wish that I could answer your question, but I just don’t have the knowledge to do so. But I would like to speak with you about addressing your concerns in my book as well as on this blog. Maybe we can help others, too. I will post another entry sometime later this week and try to find some information that might guide you. You sound like a wonderful mother, Denise. Hang in there and let me see what I can find out for you. I want to let all the parents know that it is you who guide this blog and the book with your comments and questions. Feel free to email me personally. I will send you my email.

      Cheryl

  2. I found this because a friend was talking about her son and a possible diagnosis and I was looking for info. It sounds a bit like this is an auditory version of dyslexia? If so, do you know if they are doing any research into the two together?

    How young were your kids when you thought they might have a problem?

    • Hi Selmada, think of MERLD more like aphasia. Better yet, think of it as a computer that gets input, but somehow the wires are crossed and the data doesn’t get processed the way it should. That’s what happens with MERLD children. We found out with both our MERLD kids when they were 4. My children have no auditory problems, nothing out of the ordinary. Just processing issues that resemble autism processing issues, although MERLD is not autism. Please advise your friend that getting an early diagnosis is crucial to early intervention.

  3. Hey Cheryl,

    I am 20 years old and currently at university where I have only in the past year have been diagnosed with MERLD.

    As a child:
    I always from when I was younger hated reading, my mum would compare me to all the other kids “you don’t read enough”, even till my age now she would complain saying the cause of my ‘symptoms’ is because of not reading enough books to get better vocabulary.

    Sixth Form:
    In fact, I did well in school. I never enjoyed history, nor english, but I loved computing, art, psychology, biology… I went on to taking these types of subjects for A-level and got ABB. At this point, it was not apparent that there may be a problem. I believe it to be because art is creative in expressing artistically not verbally, computing & Biology have set right or wrong answers (also a lot of visual aids e.g. diagrams to explain) and psychology is very factual based.

    University:
    Even now I find it hard to explain myself but as I got to university to study a degree in Communications and Media Studies it involves tonnes of reading, essay work and a lot of theory work requiring background reading etc…. Here I struggled to keep up. Seeing everyone else manage and wonder why I am incapable got me upset and frustrated thinking I’m stupid. I would go to lectures and not be able to keep up with writing notes; remembering the first half of what they say, then go to remember the second half and forget the first then panic and forget it all together! It took me forever to read as I would read a whole page and think afterwards: “I cant remember what I just read!” In essays, I would be stuck for hours thinking of the exact word I wanted to use or a way to write what I am thinking in my head.

    Bad memory?!:
    I would always complain about my memory. My mother would reply with ah I have the same problem, we all do. But what child at around 13 has memory problems?? It is so easy for a parent to dismiss symptoms as nothing (understandably, no one wants to think their child could have a disorder of any kind). It is so easy to understand those with physical problems (something visible) compared with mental disorders, therefore it is so easily overlooked. Funnily enough I was always good with remembering my lines for plays. I see now, it is easy for me to memorise and repeat it back (after lots of memorising) however I can only tell you exactly what it said. I cannot take in what I memorised and use it myself (put it into my own words).

    Diagnosis:
    I took a test at university thinking it could be dyslexia…. after £180 pounds spent to take the test they told me I wasn’t. I actually wasn’t happy to hear that, I was so desperate to find a cause, a reason for struggling more than others, to prove that I am putting in just as much effort if not more than everyone else yet struggling so much. He looked into the results some more, finding symptoms of MERLD.

    The test:
    Looking back at what I struggled with so much in the test, it was questions where I was shown pictures (simple ones like a beach ball) and told to say what they were. “Sure” I thought, “easy enough, its a beach ball”. He then would say “now explain to me what it is without using the word itself”. It was incredibly embarrassing to not be able to do it. We then moved on to a reading passage and questions at the bottom he told me I had a certain time limit to read it. Easily enough I read through it all but when he took it away and asked me questions on it, I failed miserably. I could barely remember what the topic was let alone answer the questions. When he gave me a second chance (to read it once more) I improved slightly. He then let me choose a passage to read for a 3rd time and write a short essay on it. He was impressed with my ability all of a sudden.

    Now?:
    So here I am now (2nd year at university), the passed 2months I have been struggling with my course (exams coming up) leaving me stressed, the stress leaving my immune system vulnerable, becoming ill and taking antibiotics had left me with symptoms of depression and it all spirals from there. Especially feeling like I had no one to talk to and that no one believed me (especially with not a very pro-active mother).

    I stress now that so little people take symptoms seriously, and if you don’t deal with them (or at least try) when your child is young, it is harder to deal with when they are older and have so much more problems in their late teens than ever before.

    What next?:
    It is soo nice to hear about other people’s stories (so comforting).
    I do not know where to go from here. I have been recommended to see a psychologist I think it was but I am worried about the costs (I’m in the UK) and whether it will be a waste of time! Is there actually any proven help for people with MERLD?

    Thank you,
    Alexandra

  4. Wow I’m so pleased I found your site. My son has ADHD, but the principal yesterday told me she thinks K might have MERLD…..so the investigation begins :-)

  5. I dont understand much about the difference between ADHD, MERLD, autism.. but I know one thing.. my child suffers from something serious.. He is not like other kids of his age.. he does not understand what I tell him. THen how can he reply? he is running all the time, picking up this or that, throwing it all around.. He understands only simple commands, that too, with many repetitions.. My family had many genetic problems.. my brother has schrezophrenia.. i thought atleast next generation would be fine.. but now i understand.. My genes are worst ones.. We dont have any right to marry or have kids.. If we try we will make only bad kids.. Society will never accept us.. I dono why God is testing us so much..

  6. I’m so excited to find your site. My 4 year old son seems to have what you had described. Which then also translated to his social intelligent. He doesn’t seems to play well with other kids in his preK class due to him lack of communications. So he ended up playing independently. I put him he Pre-K is to learn, but more importantly to learn how socialize with other kids. I’m actively seeking for therapy to help improve his language development. If anyone’s kids were successful treated, please enlighten me. I feel so helpless and heartbroken.

  7. I can’t thank you enough for this site. I no longer feel alone trying desperately to help my daughter with her MERLD. She was diagnosed at age 5, and at age 12, still struggles. I thought for years she was autistic, and others tried to convince me that she was. Her school and pediatrician have provided little help in understanding this disability. It has been a struggle since 1st grade, and I have fought and fought to get her the proper intervention that she needs. I really appreciate Alexandra sharing her experience. It helps me to better understand my sweet daughter, Wish I could get some teachers to understand MERLD.

  8. My Daughter has been diagnosed with Merld she is now 10. I was wondering what kind of behavior problems you guys experience with your children? And if they improve?

  9. Pingback: Pre School for 2.5yo with Development Delay

  10. Hello ,

    To all of you great parents since the age of 4 my daughter was only cooing and I knew that she was responding a little abstract than my 7 year old .now if you’re a parent of more than one child you know that they are all different and you have to parent them differently.I had to fight and I still fight as an advocate for my daughter Heaven is her name.Please keep in mind that the condition which we speak of is not as popular as Dyslexia, ADD,ADHD,Autism , Asperger’s Syndrorm or Any other Learning Disorder.In saying that i simply mean you have to educate others as you’re getting educated about you child’s condition.I have spent thousands of dollars on private schools, speech therapist and even read where my child would have more of an advantage in Public school(wrong) the only benefit this offered is an umbrella of a team that tested her on several different things and came back with nothing!!!!When I said I was removing her from that school after 2 years and oh yeah it will take about that for them to notice,document and evaluate the student before any special services are done.The school then decided to make her Special Needs..what does that provide yoou may ask a team that works with her minimally documents and doesn’t really push her they are caregivers that say do the best you can .at the end of the school year if she has not achieved on her grade level they can decide to move her forward anyway…Sound good((((((NNNNNNNOOOOOOO)))).Because you will have the same issue over and over . I got tired of that so I decided to home school now, this may work for some depending on your situation but,this was way more than I could handle as there is very little information on MERLD.So now she i back in Public school since I missed the deadline for her Private School Tuition Sponsorship given her in the state of Georgia….That’s not going well as she is not on track with the track that their currently on she is now in the 5th grade and she has to take the CRCT this always horrifies her due too her ability(NOT DISABILITY)…she must pass math and she has a very horrible Math teacher that refuses to help her.I have what you call an IEP meeting this is standard for special needs student this is when all the students teachers and parents have a round atble about the child’s weakness, progress and then a plan wish me luck and feel free to ask any questions as I consider myself to be a great source when it comes to Speech Pathologist,Physiologist,Psychiatrist,Predication,Developmental Pediatrician,Public schools,Private Schools,And home schooling but most of all I am My daughters biggest Fan!!!!

  11. I’m very glad to find your site as well. Our little girl was given the term ‘expressive language delay’ at age four, which I was uncertain of. I think this description is much closer – it has always seems her wires are a little crossed up or ‘holes in the map’… She is very intelligent – so sometimes she can fill in the gaps, and other times when she tries it is all backwards or one-off etc.. She sounds like a three year old at nearly six, and it stands out when she plays with other children. Her father and other family members did not see the issues – some still think she is just ‘stubborn’ or ‘playing us for all its worth’. She has anger bursts when she can’t be understood or when things were not as she thought she heard. But, being more of a visual learner myself, I identified with her difficulties from before she was two…finally getting a test on my suspicions. She also has some ‘auditory overload’ that comes and goes.. seems like some things ‘echo’ when she doesn’t want them, reminded of sounds and words from days or weeks ago by some thing or other…although she has difficulty remembering something someone just told her. I identify with that, though – as my memory does the same thing to me at times. I have learned to either ignore it or use it to advantage to remember information by ‘method of loci’ memory. I have an uncanny visual memory and also had ‘echolalia’ problems in preschool, which I outgrew by first grade but the social interactions were still difficult all through school. I am also always being told I ‘jump from point A to point D’, leave out words in conversation, assume someone knows that I am starting in the middle instead of the beginning etc… I’ve heard it can be genetic… Knowing is the first part- and then we can work together to help little girl to achieve her potential.

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