Age of MERLD Diagnosis?

Hello everyone - I'm new to this board and am going thru some things that sounds so similar to what all of you are. My son is 5 1/2 and we have not yet had a MERLD diagnosis, however he has been tested every year since he was 20 months, only to be told he has a language delay. I have never been completely convinced that a language or speech delay has been the root of it.

After reading all of your posts and doing a little more web research however, I feel strongly that it could very well be MERLD. He started Kindergarten last week and I have an appt with his teacher already next week. She is curious to talk to me about his test results over the years and learn more about him in general. He does not express himself well at all and doesn't always seem to "get it" when spoken to, and doesn't always answer questions appropriately. He is very social and likes to play with friends, although they don't always understand him. He cannot converse as his peers do.

I'm hopeful as this sounds like it could solve our mystery as to what our situation my be, but frustrated as we have never before gotten this diagnosis and I've never even HEARD of this disorder before just a few days ago. I think it could be because my son can speak some and has been diagnosed "delayed" by around 7 months, so perhaps they've never thought MERLD could be our situation.

However, after reading all you have to say above, I am very interested in what the school's SLP would say about this... does anyone out there have a child that received a late diagnosis of MERLD? It sounds like so many here found out around 1 1/2 - 3 years...

I am hopeful that this could be it and can improve with proper intervention. Lord know I've been praying for an answer/guidance...

Any thoughts/suggestions would be greatly appreciated.

By Laura3092
Posted September 15, 2009 at 12:33 pm
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Hi,

I was told my son was developmentally delayed through the Chicago Public School system when he was evaluated at the age of 4.

At the age of 5 my pediatrician suggested I get an actual diagnosis and he recommended a developmental pediatrician.

The developmental pediatrician is the dr. who gave my son the diagnosis of MERLD.

My son is now in 1st grade. He did well in Kindergarten. He received speech and OT in school. I also get him speech once a week outside of school at our own cost. Insurance will not pay for it. He is a friendly talkative boy. He will be 7 in October.

By seafoamrunner
Posted September 24, 2009 at 2:08 pm
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My daughter's diagnosis was changed from autism to MERLD when she was a few months short of 5. (She is now 6 and a half.) She was not a "late talker" by the traditional definition and started using single words at the normal age but she was not combining them into phrases by 2 and apparently wasn't understanding phrases either. When younger this appeared to be autism but when she gained more receptive language the autism traits went away and it became more clear that we were dealing with MERLD. She can speak quite a bit nowadays and understands almost everything if the sentence structures are simple enough, but her expressive language is still significantly behind her peers.

Anyway I think it is good that you are investigating this possibility, and I hope you are able to get appropriate help for your son!

By CMTDST
Posted September 25, 2009 at 9:33 am
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Hi Jax Mom! My little boy was diagnosed with MERLD at age 5 1/2. This diagnosis was based on many surveys completed by us (his parents) and his preschool teachers, and 6 hours of observation and testing. We have been concerned with his speech and language development since he was just a baby. He didn't coo and goo as much as other babies and was late in saying his first words. His speech improved so much when he entered preschool at age 3 and he is in kindergarten now and his speech is still improving. From your message above, Wesley sounds EXACTLY like Jax! He enjoys other children and has begun creative play within the last year, but we are still concerned about some of his "autistic behaviors". A couple of teacher's have mentioned Asberger's to me but what we have read said Asberger children do not typically have speech problems, so now I am wondering if he may have mild high functioning autism. Our main concerns are Wesley's meltdowns when he doesn't get "his way", his eating habits, and lack of meaningful conversation skills. He eats very small bites of food and he really prefers to drink than eat. Does Jax meltdown or have eating issues? Does he ask questions? As you can tell, we are not totally convinced that we are just dealing with MERLD here. We approached the school about speech therapy and have been told that since he is smart and not suffering academically (he is already reading), we are out of luck so we will have to pursue help outside of the school system. Occupational therapy did not seem to help a whole lot and we are wondering if behavior therapy may be best to help with social skills and self control for his "meltdowns" and also continue speech therapy. Have you ever read any Carol Gray books about Social stories? I look forward to hearing from you about Jax and things that have helped him and what your plans are to help him.

By Cie
Posted September 26, 2009 at 8:54 am
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Hi everyone,

My son was diagnosed at 5 (moderate to severe) and my daughter at 3 (mild to moderate). Which OT for a tremor in his right hand and intensive ST for two years (3x/wk) and now at school (1-2x wk) and various specialists (reading, math) my son is now mild-moderate and my daughter is mild. Did any of you get an MRI to rule out anything physical? I sure wish I knew a couple years ago what I know now about the disorder. How to parent, etc. with it. I definitely would not have been so passive about his learning (watching Oobi and Sesame Street a lot). Our children need interaction to create the brain connections. Definitely limit TV. Remember that what they pick up and retain could be inappropriate and inappropriately used in social situations. The kids pull what they can pull out of their brains when they cannot think of the proper response.

I've decided to write a book on living with MERLD as there's very little information out there about it. We're the parents and our kids have the disorder, so we are the experts. The book is from a parenting and child POV. Do any of you have other issues? Meltdowns could be from frustration. My son gets frustrated, but blows it off. He does not know he has MERLD, just that his brain doesn't work sometimes (his words).

I am still in the process of gathering interviews. Please email me off-list if you prefer. But our dialogue on list may help others. I will not use any information without permission.

Thanks! Cie

By bethanya99
Posted September 27, 2009 at 2:45 pm
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My daughter Audrey just turned 8 two days ago, and she was diagnosed with MERLD in August. Prior to that, we were told that she has a "significant speech delay" and "sensory integration dysfunction". As her mother, I felt that she might be on the autism spectrum. Audrey is social though, and loves to play and spend time with her friends. She also loves to watch "Tom and Jerry", because there are no words and is therefore easy to understand....and she thinks that it is hysterically funny. I agree on limiting T.V. These children seem desperate to find ways to communicate, so they will copy phrases heard in shows and use them( sometimes inappropriately) in conversation. Audrey can read wonderfully--her fluency rate is about 118 words per minute, but she lags in comprehension. Instead of processing auditorally, she processes visually. If I provide Audrey with written instructions she is usually able to do what is required. This applies to chores and to school work. If, however, a test is given orally she struggles to understand what is expected and becomes extremely anxious and worried. Audrey has been diagnosed with Anxiety Disorder-NOS as well as MERLD. The psychologist who diagnosed her feels as if the two conditions feed off of each other, and this has become a vicious cylce. Audrey has trouble with language, so she is anxious and Audrey has difficulty with language because she is so anxious. At this age, Audrey has said things to me like "Mom, I need you to give me some medicine so that I can have words like yours". She also says "I'm trying really hard, but the words aren't working". Most recently she said "Mom, sometimes my ears just start talking, and it makes my whole body feel crazy. Can you make that stop?"
All I can tell her is that we(myself, her dad, her teacher, her speech therapist and her occupational therapist) are all trying really hard to make things easier for her.

By JaxMom
Posted September 27, 2009 at 6:25 pm
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Thank you to all of you for your kind responses. We are still struggling along, but Jack doesn't seem phased by any of it - almost oblivious he has any issue at all. Have any of you found that same reaction? He is 5 1/2... I think also he may have a bit of ADD - he is not hyperactive at all, but really has a great deal of troule focusing in class, staying in his seat, etc. But once he focuses and applies himself, he can do the work with no problems. Does this sound familiar to anyone else out there?

Thanks again for all of your responses... Jack's Mom

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