Guest guest Posted September 15, 2010 Report Share Posted September 15, 2010 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 Thanks! -Virginia ________________________________ To: Sent: Wed, September 15, 2010 9:43:23 PM Subject: Virginia  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, Dr. Riseberg is just a wonderful doctor who listens to parents. She is very reliable. I would send her emails all the time and she would answer within a few hours (sometimes minutes). If we needed a referral she would do one right away. She also has a good relationship with the Down Syndrome clinic and would call them if she needed resources to better serve us. In the process of getting an appointment with the Developmental Medicine (the waiting list could take several months there) she contacted a fellow doctor that worked in the Center for Developmental Medicine. She was very helpful. So, the diagnosis is done by the center for developmental medicine and by the ICCD. You don't need to do both. You can go to one or the other. There are other centers too. These are only the ones I went to. I did both mainly because I was told by many people (including some therapists) that my daughter didn't have autism, that it was all due to the level of her mental retardation. I wanted to know for sure that I was not crazy. The ICCD did a one-hour evaluation and provided me with a diagnosis right away: a one page letter that says that my daughter has autism and that they recommend 25 hours a week of ABA in addition to other therapies. I could have done a complete evaluation with ICCD but my health insurance didn't cover it and I would have to pay some extra money. So, I decided not to. But at least I got a diagnosis. A complete evaluation (a 4-hour evaluation with a developmental pediatrician and a psychologist) was done in the center for developmental medicine at children hospital Boston. They provided us with a 20-something page report that recommends 20 hours of ABA in addition to other therapies. So, we end up with two medical reports. The Down Syndrome clinic was a facilitator as it was also the pediatrician. They screened my daughter and helped me get support. I was contacting , the DS coordinator, very often. It surprisingly didn't take us long to get a diagnosis. We first started seeking out help this past April and got a diagnosis in May (from the ICCD) and June (from the Developmental Medicine). The easiest way to get an appointment will be to go to the ICCD. They are well respected and have more availability than children hospital. I would call them tomorrow and ask for an appointment as soon as possible. Let me know if you need more information. Miriam ez > > > 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 > > ________________________________ > From: miriam martinez <miriamdorcas@... <miriamdorcas%40gmail.com>> > > 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@...<morningtravelers2%40yahoo.com>. > 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 > > On Wed, Sep 15, 2010 at 9:22 PM, Sara Cohen <pastmidvale@...<pastmidvale%40gmail.com>> > wrote: > > > > > > > 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><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%40AOL.com> " < > > mfroof@... <mfroof%40AOL.com> <mfroof%40AOL.com><mfroof%40AOL.com> > > > > > > > To: <% > 40yahoogroups.com> <% > > > 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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