Adult Down Syndrome Center: 25 Years of Holistic Care



the day I came to the Down syndrome clinic was the day that molded the whole rest of his life they were totally focused on the patient who had Down syndrome and I felt 100% confident that they had the knowledge to guide us all the way I would describe Colleen as somebody who is very loving happy my mom at that time she had fallen and fractured her skull the family was all very focused on taking care of mom but not focused on what was going on with Colleen Colleen was living with my mom and started leaving the home in the middle of the night so I told mom that I would just take her home with me my background is a nurse when we brought her home she was what I would say in a complete mental breakdown well I knew I was out of my room so I looked up the Down syndrome center and she loved them pulling right up looking at her talking to her and I actually think she started to have a little crush on doctors should you thought dr. Sequoia was cute didn't you it's right Colleen was 34 and dr. Sequoia and dr. McGuire started coming up with a plan of care and I thank God that it turned things around she has come farther than before even the breakdown my siblings when they saw her they were just totally shocked she was talking to them telling them about her life she was telling him all about her work everything that she does and they were just in awe seeing a patient like Colleen improve be able to participate in Enlai more fully you know that's really that's what this is all about advocate medical group adult downstream center opened in January of 1992 no we started serving adults with Down syndrome two morning's a month and it just continued to grow they provide a wealth of information that you just can't get anywhere else and without them he wouldn't be doing what he's doing today he lives in an apartment with three other gentlemen – with Down syndrome I've been fine carrying at Sherman and general to watch them Santa take walkins fairs and Andhra sighs I'm a piece of they connected Anthony up once they knew he wanted to attempt volunteering the opportunity to volunteer gives them a sense of purpose gives them a chance to give back you know people are off and doing for them now they are doing for other people we provide that only health care for people with Down syndrome but also their social needs and their emotional needs everyone here has been his biggest cheerleaders it didn't matter what Ian said he was doing whether it be the job the Weight Watchers always keeping it in his mind and I think helped me with staying active and eating healthier and sometimes it's like complicated we do a variety of things here with regards to cooking classes and Zumba classes friends have been made because of our programs a number of things that really extend beyond typical primary care physicians office many times we will have new patients come into our clinics that are twelve years old through all the different changes in their lives through adolescents transitioning over into adulthood when I graduated from medical school in 1984 the life expectancy of people with Down syndrome was less than 30 and it has grown to about 60 so there's a much larger population of adults with Down syndrome than there was the past but one of the things that became very clear to us as time went on is that there are huge gaps in the knowledge about taking care of people without syndrome one of the things that we have that no one else in the country has is the volume of patients so ongoing research is really an important piece of what we're doing trying to proactively educate people about early intervention and what to be aware of and what to look for in thinking back I had to been telling Janet every red flag thing there was her walking had changed and she also was walking behind me hanging back Janet said to me Bo I think we need to start calling on some Alzheimer's medicine we do have an Alzheimer's support group for the caregivers of a person with Alzheimer's and Down syndrome it's very hard on that patients very hard on the families and we really want to see what we can do to help them improve the situation it's a relief that when it comes to his medical needs that we can come somewhere where they understand it really gave the future I think is very bright we've come a long way and I think that the lives of people with Down syndrome come such a long way during that time as well thank you to the adult Down Syndrome Center for making all the little puzzle pieces of Anthony makes sense and it helped to mold a pretty special young man here right yeah right thank you we love you

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