Guest guest Posted September 15, 2010 Report Share Posted September 15, 2010 Thanks Margaret. I appreciate all the information you have shared. I will be reading the files and talking with her pediatrician as well. We will be having an IEP soon, so I am hoping that her diagnosis is done before that so that we can tailor the IEP around the autism diagnosis. I live in Boston. As I continue to listen to all of your responses, I see more of the autism in Zoe. She cries when songs are played. I used to think it was only slow songs, but not it can be slow or fast songs. I believe this is sensory related. Before I thought she was just over reacting. My bad. Again, thank you. Virginia ________________________________ To: Sent: Wed, September 15, 2010 8:57:55 AM Subject: Virginia  HI, Everyone.....Virginia....welcome to the group. My son, Gareth, is 22 y/o with the DS/ASD/OCD dx. He was dx'd @ age 5-6 ish by numerous individuals. His Ped suspected it, sent him to a child psychologist who verified it, and then, sent him on to a neurologist who agreed. Nowadays, there are developmental pediatricians, etc. What does her doc say? Start there. Go to the files section and read some of the articles about dual dx. Print them off and take them to her doc if your struggling with their acceptance. To me, the big " A " dx opened doors to more extensive therapies (speech & OT) but, the biggest help was just understanding why my kid acted like he did......the meltdowns, the sensitivity to sounds/lights, the head banging, the flop and drop, lack of communication when he use to talk/sign, don't touch me, etc. Also, it will help the school district understand and gear her education more towards the autism way of learning as opposed to regular learning. Autism should become her primary dx for schooling.....not the DS/MR. It is the autism that will impair/impede her education/life forever. Where do you live....someone may be able to direct you to a local doc or medical connecter? Take care, Everyone. Margaret Mom to Gareth, 22 y/o, DS/ASD/OCD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2010 Report Share Posted September 15, 2010 Hey folks - Where is that great DS clinc in Boston?? Is there an ASD clinic there as well???? > > > Thanks Margaret. I appreciate all the information you have shared. I will > be > reading the files and talking with her pediatrician as well. We will be > having > an IEP soon, so I am hoping that her diagnosis is done before that so that > we > can tailor the IEP around the autism diagnosis. I live in Boston. > As I continue to listen to all of your responses, I see more of the autism > in > Zoe. She cries when songs are played. I used to think it was only slow > songs, > but not it can be slow or fast songs. I believe this is sensory related. > Before I thought she was just over reacting. My bad. > Again, thank you. > Virginia > > ________________________________ > From: " mfroof@... <mfroof%40AOL.com> " <mfroof@...<mfroof%40AOL.com> > > > To: > Sent: Wed, September 15, 2010 8:57:55 AM > Subject: Virginia > > > HI, Everyone.....Virginia....welcome to the group. My son, Gareth, is 22 > y/o with the DS/ASD/OCD dx. He was dx'd @ age 5-6 ish by numerous > individuals. His Ped suspected it, sent him to a child psychologist who > verified > > it, and then, sent him on to a neurologist who agreed. Nowadays, there are > developmental pediatricians, etc. What does her doc say? Start there. > Go to the files section and read some of the articles about dual dx. Print > them off and take them to her doc if your struggling with their acceptance. > > To me, the big " A " dx opened doors to more extensive therapies (speech > & OT) but, the biggest help was just understanding why my kid acted like he > > did......the meltdowns, the sensitivity to sounds/lights, the head > banging, the flop and drop, lack of communication when he use to talk/sign, > > don't > > touch me, etc. Also, it will help the school district understand and gear > her education more towards the autism way of learning as opposed to regular > > learning. Autism should become her primary dx for schooling.....not the > DS/MR. It is the autism that will impair/impede her education/life forever. > > Where do you live....someone may be able to direct you to a local doc or > medical connecter? > > Take care, Everyone. > Margaret > Mom to Gareth, 22 y/o, DS/ASD/OCD > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2010 Report Share Posted September 15, 2010 Thank you all for the feedback! You are awesome! I am just soaking it in. Virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2010 Report Share Posted September 15, 2010 http://www.childrenshospital.org/clinicalservices/Site1869/mainpageS1869P0.html I would check out Boston Children's first!!! -- Sara- different pathways lead to Nirvana. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2010 Report Share Posted September 15, 2010 Hi Virginia, We used to live in Boston until this past month. My daughter is two and half and she was recently diagnosed with Autism through Children Hospital Boston and also through ICCD (Integrated Center for Child Development). The Down Syndrome clinic coordinator and director both helped us to first screen our daughter and then get an appointment with the center for developmental medicine. The developmental medicine department in Children Hospital Boston do a complete evaluation and gives you a report with their recommendations for treatment. Since the Down Syndrome clinic is part of the Developmental medicine department you have better chances of getting an appointment earlier if you contact Lombardo (the coordinator at the Down Syndrome clinic). You could also contact the ICCD. They have almost no waiting list. We called and they gave us an appointment within a month. You could ask for Dr. Castro (he is the director) or Dr, Menea. We saw Dr. Menea, and she was great. We also contacted Charlotte Gray, another mother with a child with DS and ASD. She runs a group for families with children who are dually diagnosed. The email of the group is morningtravelers2@.... She was very helpful. Our pediatrician was extremely helpful too. If you need a new pediatrician her name is Dr. Robyn Riseberg from the Southend Community Health Center. Hghly recommended!!!!! I hope this helps. If you need more information please let me now. Miriam > > > Hey folks - Where is that great DS clinc in Boston?? Is there an ASD > clinic there as well???? > > > On Wed, Sep 15, 2010 at 8:43 PM, V N <vtnvtnvtn@...<vtnvtnvtn%40yahoo.com>> > wrote: > > > > > > > Thanks Margaret. I appreciate all the information you have shared. I will > > be > > reading the files and talking with her pediatrician as well. We will be > > having > > an IEP soon, so I am hoping that her diagnosis is done before that so > that > > we > > can tailor the IEP around the autism diagnosis. I live in Boston. > > As I continue to listen to all of your responses, I see more of the > autism > > in > > Zoe. She cries when songs are played. I used to think it was only slow > > songs, > > but not it can be slow or fast songs. I believe this is sensory related. > > Before I thought she was just over reacting. My bad. > > Again, thank you. > > Virginia > > > > ________________________________ > > From: " mfroof@... <mfroof%40AOL.com> <mfroof%40AOL.com> " < > mfroof@... <mfroof%40AOL.com><mfroof%40AOL.com> > > > > > To: <% > 40yahoogroups.com> > > > Sent: Wed, September 15, 2010 8:57:55 AM > > Subject: Virginia > > > > > > HI, Everyone.....Virginia....welcome to the group. My son, Gareth, is 22 > > y/o with the DS/ASD/OCD dx. He was dx'd @ age 5-6 ish by numerous > > individuals. His Ped suspected it, sent him to a child psychologist who > > verified > > > > it, and then, sent him on to a neurologist who agreed. Nowadays, there > are > > developmental pediatricians, etc. What does her doc say? Start there. > > Go to the files section and read some of the articles about dual dx. > Print > > them off and take them to her doc if your struggling with their > acceptance. > > > > To me, the big " A " dx opened doors to more extensive therapies (speech > > & OT) but, the biggest help was just understanding why my kid acted like > he > > > > did......the meltdowns, the sensitivity to sounds/lights, the head > > banging, the flop and drop, lack of communication when he use to > talk/sign, > > > > don't > > > > touch me, etc. Also, it will help the school district understand and gear > > her education more towards the autism way of learning as opposed to > regular > > > > learning. Autism should become her primary dx for schooling.....not the > > DS/MR. It is the autism that will impair/impede her education/life > forever. > > > > Where do you live....someone may be able to direct you to a local doc or > > medical connecter? > > > > Take care, Everyone. > > Margaret > > Mom to Gareth, 22 y/o, DS/ASD/OCD > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2010 Report Share Posted September 15, 2010 Thank you, Miriam! This is great information. Can you tell me more about Dr. Riseberg and why you recommend her? Also, who actually did the diagnosis? The Down Syndrome Clinic? The Center for Developmental Medicine? or the ICCD? Was it an extensive process as far as when you first applied and when she was seen and then when she obtained the diagnosis? Thanks, Virginia ________________________________ To: Sent: Wed, September 15, 2010 9:55:14 PM Subject: Re: Virginia Hi Virginia, We used to live in Boston until this past month. My daughter is two and half and she was recently diagnosed with Autism through Children Hospital Boston and also through ICCD (Integrated Center for Child Development). The Down Syndrome clinic coordinator and director both helped us to first screen our daughter and then get an appointment with the center for developmental medicine. The developmental medicine department in Children Hospital Boston do a complete evaluation and gives you a report with their recommendations for treatment. Since the Down Syndrome clinic is part of the Developmental medicine department you have better chances of getting an appointment earlier if you contact Lombardo (the coordinator at the Down Syndrome clinic). You could also contact the ICCD. They have almost no waiting list. We called and they gave us an appointment within a month. You could ask for Dr. Castro (he is the director) or Dr, Menea. We saw Dr. Menea, and she was great. We also contacted Charlotte Gray, another mother with a child with DS and ASD. She runs a group for families with children who are dually diagnosed. The email of the group is morningtravelers2@.... She was very helpful. Our pediatrician was extremely helpful too. If you need a new pediatrician her name is Dr. Robyn Riseberg from the Southend Community Health Center. Hghly recommended!!!!! I hope this helps. If you need more information please let me now. Miriam > > > Hey folks - Where is that great DS clinc in Boston?? Is there an ASD > clinic there as well???? > > > On Wed, Sep 15, 2010 at 8:43 PM, V N ><vtnvtnvtn@...<vtnvtnvtn%40yahoo.com>> > wrote: > > > > > > > Thanks Margaret. I appreciate all the information you have shared. I will > > be > > reading the files and talking with her pediatrician as well. We will be > > having > > an IEP soon, so I am hoping that her diagnosis is done before that so > that > > we > > can tailor the IEP around the autism diagnosis. I live in Boston. > > As I continue to listen to all of your responses, I see more of the > autism > > in > > Zoe. She cries when songs are played. I used to think it was only slow > > songs, > > but not it can be slow or fast songs. I believe this is sensory related. > > Before I thought she was just over reacting. My bad. > > Again, thank you. > > Virginia > > > > ________________________________ > > From: " mfroof@... <mfroof%40AOL.com> <mfroof%40AOL.com> " < > mfroof@... <mfroof%40AOL.com><mfroof%40AOL.com> > > > > > To: <% > 40yahoogroups.com> > > > Sent: Wed, September 15, 2010 8:57:55 AM > > Subject: Virginia > > > > > > HI, Everyone.....Virginia....welcome to the group. My son, Gareth, is 22 > > y/o with the DS/ASD/OCD dx. He was dx'd @ age 5-6 ish by numerous > > individuals. His Ped suspected it, sent him to a child psychologist who > > verified > > > > it, and then, sent him on to a neurologist who agreed. Nowadays, there > are > > developmental pediatricians, etc. What does her doc say? Start there. > > Go to the files section and read some of the articles about dual dx. > Print > > them off and take them to her doc if your struggling with their > acceptance. > > > > To me, the big " A " dx opened doors to more extensive therapies (speech > > & OT) but, the biggest help was just understanding why my kid acted like > he > > > > did......the meltdowns, the sensitivity to sounds/lights, the head > > banging, the flop and drop, lack of communication when he use to > talk/sign, > > > > don't > > > > touch me, etc. Also, it will help the school district understand and gear > > her education more towards the autism way of learning as opposed to > regular > > > > learning. Autism should become her primary dx for schooling.....not the > > DS/MR. It is the autism that will impair/impede her education/life > forever. > > > > Where do you live....someone may be able to direct you to a local doc or > > medical connecter? > > > > Take care, Everyone. > > Margaret > > Mom to Gareth, 22 y/o, DS/ASD/OCD > > > > Quote Link to comment Share on other sites More sharing options...
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