MERLD - late diagnosis

Hello, all.
My six year old daughter was just diagnosed with MERLD. Although I noticed something wasn't right when she was about 2 years old, everyone I talked to told me that she was probably just "late" and to give it more time. By 4, there was little improvement and she then started kindergarten. After working with the school psychologist, speech therapist, special ed teacher, regular ed teacher, and her personal aide, still no one could give me an answer. She had SOME markers for autism but not enough to put her on the spectrum. Tests for her receptive and expressive language were incredibly low (better than 1% of her peers), but still no one told me MERLD was a possibility, and at the time I had never heard of it. Finally, behavioral problems surfaced this year during 1st grade after having a wonderful kindergarten year, so I consulted a LSW through the behavioral health system in my community, within a week the possibility of MERLD was discussed. I sat in his office and cried, although it was sad to know that she could have MERLD, it was equally relieving to finally put a name to what it was my daughter was experiencing. I'm still not very familiar with what this disorder is, how it works and what causes it, or what treatments are out there. I know speech therapy is the most highly recommended, and my daughter was recieving ST services through the school until this past November when that faculty member resigned. Since then, behavioral problems have increased and I have not seen the same rate of improvement to her language skills. Working on trying to find a private ST to work with her, but until then any helpful suggestions or tools I could use at home or suggest to her teachers would be greatly appreciated. In general, any support from other parents who have gone through or are experincing raising a child with MERLD, I would be so thankful to hear. I just want to do everything I can to make sure that my daughter is recieving the best treatment and attention possible.

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Hello Natalies mummy,

Im sorry to hear about your daughter having MERLD you have probable seen from my post that you commented on Son Cameron just turned 3 also have MERLD. he doesn't go to private speech any more we are waiting to decided if he will cope with it as he is in a speech and language program for 3-4 year old and is doing block of speech and OT at the development centre as well as OT playgroup.. he goes to daycare 2 days a week and now he is in in the 3-5 year old kindy section he is doing really well he seems to be learning from the kids and thriving don't get me wrong he is still a long way behind and Im really not sure how far but as a guess I would say 9 - 12 months with Receptive he can sing and talk beautifully when he understands what you want from him and has just starting asking questions and answering question which is a huge deal to me and with regards to your post about toilet training he seems to be telling us ! but Im not getting my hopes up slowly slowly.

he had his first day of the pre kindy speech program and he didn't want to participate ( which didn't surprise me as he is always reluctant in new places that are crowded) but one thing that surprised me was his behavior towards other kids ! he was pushing them and shoving them and I honestly felt like crying Cameron is usually caring and so gentle ( of corse the occasional scuff over someone taking his toys ) this was the first sign of behavioral issues with him so if you have any tips on this Im all ears!

What annoys me most about MERLD is the fact Some people think oh no he is fine there is nothing wrong with him and then the next day I get oh yes he is Autistic you need to get him reassessed ! ARGH drives me nuts.

and with regards to your other post Cameron was a natural Birth and was fine up until the age of about 20 months when he started biting and not joining words together properly. I did think for a while that is was due to a big bout of Antibiotics as he has an infection and blockage in his testicles ( yes I know OUCH he was scream in pain and was on them for for 4-6 weeks I think I stopped them before the doctor told me too. as they were doing much ) I didn't know then that there is a connection between development at that time and prolonged antibiotic use.. but honestly there could be so many reason or just one its the way he is and who knows his dad might have been MERLD and maybe my brother was my dad could not be tt until he was over 4 ! its one of those question you will most likely always ask yourself WHY.. but you will never find out so its best to try and not focus on it .. any way welcome to the site and I am new here too.

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It is frustrating more professionals don't know about MERLD and how it affects children. It goes beyond language...if you cannot understand what is being said OR expressive yourself to get your needs met, it affects your behavior. This SHOULD be only common sense, but it's amazing how many "experts" try to pin those behavioral issues then on autism.

If you go to and join, you'll find hundreds of parents whose children have MERLD.

If you want a true expert on MERLD, that would be Dr. Stephen Camarata at Vanderbilt University.

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Speech - Speech and more speech - has been my experience. I have also sat in on many of the sessions to learn their techniques so I can work with her at home. Are you in the states?? Does your child have an "IEP" Individual Education Plan? If you are in the states there is an "Individuals with Disabilities Education Improvement Act" Your public school is OBLIGATED to review your child's education and determine an individual plan. This plan should include a complete evaluation to determine specific goals and objectives as well as their plan to reach these goals and objectives. This should include speech therapy twice a week - possible resource room help - My daughter also had behavior issues due to her disorder and had a school social worker - spend time with her - teaching her social skills, conflict resolution, etc. In no way should your school not have had a speech therapist available for her at least twice a week. It is their obligation and you need to demand this!!!! Once you start mentioning IEP's people should start jumping.... Grab as much help as you can. What has been helpful with my daughter as well is a notebook that is documented daily with all her teachers, therapist etc. with what they have worked with her on. I ask for homework or copies of what they worked with her on so I can re-go over this at night. My daughter needs lots of repetition to learn. Has she been evaluated for her concepts?? I am thinking at her age she may have a lot of these down - What, When, Why, How, below, middle, above, half, whole, he, she, her, them, etc. - Which ones hasn't she mastered?? Once she has been evaluated you should have a list of which one's she knows and doesn't - Pick one a week and inundate her with them. Once you have a speech therapist ask for handouts to take home and work with her on. There are websites that have games, books, computer games that specialize in language disorders "superduperinc." There is another mom on this site as well that is a speech therapist and she always has excellent advise. I have spent a lot of time trying to figure out why this has happened as well as what the specific answer is to fix it and I haven't found any answers - What I try to inundate myself and my daughter with is our plan - What can I do on a daily - weekly - monthly basis to teach her the little things - concepts, numbers, math, word wall words, comprehension - What can I do to make sure the schools have a plan - that they communicate and coordinate this plan - every day can be a challenge - but when a behavior changes - a concept is mastered - you gain hope. I've learned to attack it the best way I know how - some days it seems to be working - and actually those days are getting larger in numbers. Now I have to go knock on wood!! My daughter is the same age by the way - let me know if you have any other questions...

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I totally agreed with kyrylo speech is the way to go with kids with MERLD. My son is 4 he started school when he was out of early intervention at 3 and he is being in school ever since, but I also got him one hour of speech at the children’s hospital here in NJ. And I went to every visit, because even though he is getting speech 3 times at week and OT 2 times at week, I felt that he needs outside speech so I can be involve with his progress and get ideas from the therapist. He is doing great! He is still behind, but I know he is getting the help he needs. Make sure to insist on the IEP program for your child, the school system is obligated to meet your child’s needs no matter what!!!! As soon as I have any suggestion from his doctor (developmental pediatrician) I make sure that they will implemented at school, it has not being easy, but I will do wherever it takes to make sure my son gets what he needs PRONTO! Is our obligation as parent to make sure our kids get the best they can get! And we don’t do anything about it, who will.

Sorry my English is not the greatest (Spanish is my first language)

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Woud you suggest going the Private school or Public school route with for a child with MERLD?

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If you are in the states the public schools legally are obligated to get your child all the help they need. The public schools are supposed to have therapists ranging from Speech to OT to Resource room to social workers. All of these professionals are there to make sure our children get the help they need. With private schools they are not obligated to provide any of this support. There are private schools that specialize in learning disabilities - however be sure to make sure you are not putting your child in with kids below their capability. I purposely did not put my daughter in the special education preschool in our school district because most of the children had down syndrome and autism vs. speech and language. I did find a preschool that specialized in speech disorders and that worked well. Since then I have my daughter in public schools and have been staying on top of her education - making sure she has speech, resource room etc. then following up during the week with what they are working with her on. Depending on her progress and social issues which may come up in later years - Middle and High school - I may transfer her to a specialized school. I think it depends on your district as well. It seems on these blogs that in other areas of the country and even other countries - the school districts are not as on top of the kids with special needs. I believe however that the
"Individuals with Disabilities Education Improvement Act" is a nationwide mandate in which case if your district is giving you problems you just have to scream on up the ladder or perhaps even get attorney's involved. That will get the school jumping!!! My district happens to be very accomodating which I am lucky - I also knew the "buzz" words to get the ball rolling - good luck!!!

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