What are the educational implications for a child diagnosed with Phelan McDeremid Syndrome? I have a student recently diagnosed. How do we go about planning an Individualized program for him. help!!!!!!!!
Hi Jan. I’m sorry for the delay in replying to your question. Just as with any student, you need to complete an assessment of the student and develop IEP objectives for that particular student’s needs. There is a tremendous amount of variation in individuals with PMS – some learn to speak, others use sign language, others use voice output devices; some are toilet-trained at an early age and others struggle to learn that skill. Some individuals with PMS learn to read and write. Not knowing anything about this child, I would advise you to set your expectations high and be prepared to work hard for this student! Dr. Kolevzon (Mt. Sinai) presented findings that 80% of PMS patients meet diagnostic criteria for autism. Based on that, I would recommend that teachers working with students with PMS utilize evidence-based practices for students with autism, such as Applied Behavior Analysis.
I am not a professional, but my wife is an elementary school teacher and often teaches an inclusion class. Our son has PMS also. We have learned that he thrives on a constant routine and seems to learn best through repetition and constant reinforcement. In particular, our son seems to pay more attention to learning aids that are technology based. He is really into Smartboards and I-Pads. He can and does learn. He just has to work harder and have a very patient teacher.
Was your question answered? My daughter has utilized Nevada Early Intervention services and now that her daughter will be three in December they are transferring her to the public school system and she will be evaluated and have Individualized Education Plan (IEP)Check with your State/County and local school district. Hope this helps.
Laurie
My daughter is 4 now, and attends the pre-k special needs class. Her teachers use the iPad to communicate with her, where it is touch screen, big enough to see clearly & speaks back to her. Signing is hard bc of her lack of coordination, so the iPad [& items similar to it] is what is working best. Hope this helps! Good luck!
My 32 year old daughter has just been diagnosed with Phelan McDermid syndrome. She is also bipolar. After 10 years of being well controlled on lithium, tegretol, and effexor, she has developed chronic kidney disease and we were advised to take her off of lithium and try other meds. None of the other meds have worked and she has been in the an inpatient psychiatric ward for 5 of the last 6 weeks. Does anyone know of any psychiatric facility in the country with experience in dealing with mental health issue among developmentally disabled adults? The facility she is in now is simply not equiped to deal with an 8 year old in an adult body and she is getting much worse instead of better.
Hi Gwen. I’m sorry to hear about your daughter’s heartbreaking situation. I wish I had some advice for you. Are you a member of PMSF? Have you posted on the member’s Yahoo group? That would probably be the best place to get some suggestions. If you are not yet a member of PMSF, please call our office 941-485-8000 or e-mail our administrative assistant at dianna@pmsf.org to learn how to get connected. I wish you the very best in finding the right facility and resources to help you daughter.
My brother is 22 years old and has 22q13. He just went through normal highschool in the special Ed class. He’s more like a 4 year old and that’s basically how he was treated. Nothing really special.
hola buenas tardes, tengo una amiga con una niña de 2 años que le han diagnosticado Phelan McDermid. por favor me podrian decir si en españa hay algun caso o donde debo dirigirme, gracias. Tere
You are not alone. Of the 7000 rare disease organizations, you have have an advocate amongst you like no other. Megan O’Boyle lives in VA and is tirelessly at all the right meeting and all the right avenues in Washington DC, from the Genetic Alliance to the NIH and FDA. Wishing you all the best.
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February 2, 2011 at 12:16 AM
Jan Aragon
What are the educational implications for a child diagnosed with Phelan McDeremid Syndrome? I have a student recently diagnosed. How do we go about planning an Individualized program for him. help!!!!!!!!
March 28, 2011 at 5:43 PM
Geraldine Bliss
Hi Jan. I’m sorry for the delay in replying to your question. Just as with any student, you need to complete an assessment of the student and develop IEP objectives for that particular student’s needs. There is a tremendous amount of variation in individuals with PMS – some learn to speak, others use sign language, others use voice output devices; some are toilet-trained at an early age and others struggle to learn that skill. Some individuals with PMS learn to read and write. Not knowing anything about this child, I would advise you to set your expectations high and be prepared to work hard for this student! Dr. Kolevzon (Mt. Sinai) presented findings that 80% of PMS patients meet diagnostic criteria for autism. Based on that, I would recommend that teachers working with students with PMS utilize evidence-based practices for students with autism, such as Applied Behavior Analysis.
October 17, 2011 at 12:17 PM
Philip Heath
I am not a professional, but my wife is an elementary school teacher and often teaches an inclusion class. Our son has PMS also. We have learned that he thrives on a constant routine and seems to learn best through repetition and constant reinforcement. In particular, our son seems to pay more attention to learning aids that are technology based. He is really into Smartboards and I-Pads. He can and does learn. He just has to work harder and have a very patient teacher.
October 26, 2011 at 3:48 PM
Laurie
Was your question answered? My daughter has utilized Nevada Early Intervention services and now that her daughter will be three in December they are transferring her to the public school system and she will be evaluated and have Individualized Education Plan (IEP)Check with your State/County and local school district. Hope this helps.
Laurie
December 27, 2011 at 8:58 PM
natasha
My daughter is 4 now, and attends the pre-k special needs class. Her teachers use the iPad to communicate with her, where it is touch screen, big enough to see clearly & speaks back to her. Signing is hard bc of her lack of coordination, so the iPad [& items similar to it] is what is working best. Hope this helps! Good luck!
February 26, 2011 at 10:40 AM
Gwen Moran
My 32 year old daughter has just been diagnosed with Phelan McDermid syndrome. She is also bipolar. After 10 years of being well controlled on lithium, tegretol, and effexor, she has developed chronic kidney disease and we were advised to take her off of lithium and try other meds. None of the other meds have worked and she has been in the an inpatient psychiatric ward for 5 of the last 6 weeks. Does anyone know of any psychiatric facility in the country with experience in dealing with mental health issue among developmentally disabled adults? The facility she is in now is simply not equiped to deal with an 8 year old in an adult body and she is getting much worse instead of better.
March 28, 2011 at 5:55 PM
Geraldine Bliss
Hi Gwen. I’m sorry to hear about your daughter’s heartbreaking situation. I wish I had some advice for you. Are you a member of PMSF? Have you posted on the member’s Yahoo group? That would probably be the best place to get some suggestions. If you are not yet a member of PMSF, please call our office 941-485-8000 or e-mail our administrative assistant at dianna@pmsf.org to learn how to get connected. I wish you the very best in finding the right facility and resources to help you daughter.
February 29, 2012 at 5:19 PM
Kim Seiler
My brother is 22 years old and has 22q13. He just went through normal highschool in the special Ed class. He’s more like a 4 year old and that’s basically how he was treated. Nothing really special.
March 7, 2011 at 1:15 PM
tere
hola buenas tardes, tengo una amiga con una niña de 2 años que le han diagnosticado Phelan McDermid. por favor me podrian decir si en españa hay algun caso o donde debo dirigirme, gracias. Tere
March 2, 2012 at 8:55 AM
Jonathan Monkemeyer
You are not alone. Of the 7000 rare disease organizations, you have have an advocate amongst you like no other. Megan O’Boyle lives in VA and is tirelessly at all the right meeting and all the right avenues in Washington DC, from the Genetic Alliance to the NIH and FDA. Wishing you all the best.