Guest guest Posted January 12, 2003 Report Share Posted January 12, 2003 > Hi , I have to say that I am very lucky to be born in Holland because there are a lot of facilities for the handicapped to make sure that they are able to live on their own. First of all the state provides you with an income if you are invalid for 80/100%. This is not a very high amount but it is for a family 100 % of the minimum-wage. That's about 1200 EURO per month. This is not including additional subsidies for rent and child support. Second, Most of the extra cost you make because of your handicap are also paid by the state. For example cost for changing the house ( to make it accessable for a wheelchair ) There are also different types of housing projects. It is possible to rent a house, made accessable for a wheelchair by the housing corporation. These corporations are obliged to offer a certain number of accessable houses. There are also FOCUS-houses. These are houses where the people can live on their own but have professional help within their reach 24 hours per day. I think there are some more possibilities I don't know about :-) I am in the position that I live in a house owned by my family so I don't have these problems but in Holland there is always a way if you want to live independently. I used to own my own company but I am not working anymore. I needed too much energy for work and it wasn't worth it. I have my family now and I would like to use all my strength to give them a family life as normal as possible. I hope I answered your question, Take care, Eddy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2003 Report Share Posted January 12, 2003 Hello Eddy, you have a beautiful family. Congratulations on your little baby boy, he is very cute. I'd like to ask again that anyone that could, to please send me pictures and a short bio. so that my fundraiser will work well. I need alot of people. Thanks to those that already responded, but I need more! I won't use anyone without prior permission. Thanks, Susi New member > Hi guys, > > I am already reading this group for a while but I never posted a message. > First I would like to introduce myself. My name is Eddy and I live in Holland. > I have SMA type III. I am living together with my girlfriend and god blessed > us with a beautiful baby boy last october. I will also post some pictures so > you can imagne a face with a name :-) > If somebody would like to see my family album, they can see it here : > http://photos./eddy_thailand > > Eddy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2003 Report Share Posted January 12, 2003 Welcome, Eddy. I'd definitely like to visit Holland someday, Amsterdam especially! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2003 Report Share Posted January 17, 2003 Edna- you can certainly give Bill our e-mail addy. The MDA coordinator (not sure if that is her exact title) is McGuire; the # I call to get to her office is 410-494-7072. I was also given some contacts for " respite care resources " from a case manager/social worker @ Mt. Washington Pediatric Hospital. *Developmental Disabilities Administration 410-902-4517 *Abilities Network/Epilepsy Foundation 410-828-7700 or 1-800-492-2523 (headquarters) *United Cerebral Palsy Assoc. 1-800-451-2452 or 410-484-4540 contact:Arnetta Gibson 410-242-9010 x233 *Creative Options 410-780-4095 contact: Tim Rache, Director of Support Services *Caring Network 866-227-4644 (toll free) I have only been in contact with McGuire not any of the other resources yet. I am not sure exactly what services are available or what Bill might be looking for but I figured it would give him a starting place. How about insurance/SSI/ Medicare? Hope this info is helpful and my apologies for taking so long to get back to you ~ life is finally getting back to " normal " around here and Callie is doing great since coming home from her first hospital visit. Praise God!! new member Hello! I am 53 and live in Florida. I met a very wonderful 24 year old young man on my group for caregivers site. He has SMA and was being cared for by his grandmother until her recent death. Now he is trying desperately to find all the services he may be entitled to in Central land. I am hoping that some of you can help me to help him find out who does what and how to get things rolling. He has a case manager but he is not very responsive (that was being kind!). I think your group would be very helpful to him in many ways. Please let me know how you got services and what types you have , especially if you are in land. Edna ednawinona@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2003 Report Share Posted January 20, 2003 Welcome Therese, This is a great group of people! I am sure we can teach and learn from each other. Sounds like you are a busy person. I hope you work out the respite situation. Our area programs are great about respite, if you aren't working that is. We are offered, through 4 different agencies, many more hours a week than we use. I know some people on the list get no respite services. I'm looking forward to hearing about all of your experiences with . Gail :-) Gail-Mom to Seth 6 ds/asd/pica, jo 10 the gymnast, 12 the pianist, 25 beautiful but a pain, Jen 27 the wallet breaker, Grandma to Errick 6 ALL boy and wife to , my hero. << Hello, My name is Therese. My daughter , has DS and has recently been diagnosed with PDD (PDDNOS). I have been tuning into the group posts for the last few months as we went through the diagnostic process. is 12 years old and I feel a little guilty that she has just been diagnosed. It was actually a new teacher this year that suggested that displayed many autistic behaviors. I found the Disabilities Solutions Issue on DS-ASD and Joan¹s article and that was a turning point for us. (Thanks Joan!) Up until then, I knew was not like other DS kids but I didn¹t have a clue as to why. We live in Seattle, Washington with Ken (Dad), and ¹s two sisters, (18 yo- away at college) and (15 yo). attends a public middle school here in a self-contained classroom that uses life-skills and visually based communication models. Our big focus educationally is communication, behaviorally it is getting her to socially interact with others. is non-verbal and uses a communication device with some success, especially when highly motivated by things like, ordering at Mcs, etc. She loves every Disney movie ever made, listening to music, drawing, cooking, swimming, bowling, boating, going to the ocean beach and playing with her dog, Cody. My biggest challenges are handling ¹s care and juggling a full-time job while my support systems are eroding. My mother in law, who used to be my ³crisis² sitter is now in a nursing home. ( My side of the family all live 1500 miles away.) My oldest daughter, who adores , is now away at college and my 15 year old helps out but is so involved with her own activities now that she¹s seldom available. So I need to make that big leap of faith into getting a respite care system set up soon. I¹m having a tough time with it. At first, this dual diagnosis made me very sad but somewhat relieved to finally know what was really going on with my daughter. It also helps to know there are other parents out there facing similar challenges. I look forward to getting to know all of you and your children. Therese Mom to (DS-PDD) >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2003 Report Share Posted January 20, 2003 Hi Therese, My name is a and we're neighbors! I live in Everett so I'm maybe a half hour away. My Hannah will be six on Wednesday and she was diagnosed last year as being Autistic there at Children's in Seattle. We are also non-verbal and our big thing that happened at Thanksgiving is that Hannah has finally learned to suck. She has been using a g-tube since birth for all her liquids. I can't believe that I actually packed up all the equipment from my kitchen counter and put it away - the only bad thing is that I'll see less of the UPS man since he won't be bringing so many medical supplies to the house anymore! : ) Just kidding ladies! I also have a 12 year old son who has Tourette's syndrome and Obsessive-Compulsive Disorder and an almost 8 year old daughter who just has middle-child syndrome! Well, glad you're here. Hope you can find the help and support you need. Blessings, a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2003 Report Share Posted January 20, 2003 Welcome to " Stilligan's Island " support group Pat! It sounds as if you are no stranger to this disease. I was diagnosed in 1987. (although I had the disease many years before that.) I am sorry for you that your remission of 6 years ended, but hopefully with some of the newer meds now available, you will get back into another remission, even it it is with meds. What do you think caused the disease to come back after 6 years?? Isn't it great to find others with this Stills Disease?? Not that we are happy that others are ill..just that it makes the " dragon " a little easier to drag around day after day, when we know we aren't doing it alone. You probably already know how informative, and wonderful this group is. We even have fun from time to time. Where do you live Pat?? Do you live alone or with family? Anyhow ...again, welcome!!! ~~tricia~~ Wisconsin ***************************************************************************** *************** -- new member Hi my name is Pat, I have been a lurker for the past 3 weeks. I love this site already. I was diagosned in 1988, by a rhemi, and I really thought I beat this disease. For those of you out there that think a remission wont come, please have faith, it very well may...I was in remission for at least 6 years!!!(you really do lose track when you are feeling great as to the length of time) I mean a full remission..no meds..this was after 2 hip surgeries(I had a core decompression done in both hips) this was due to AVN of both hips from the high dose of predisone I was on. When I finally came off that and tried gold shots(had severe reaction) then went to MTX for 2 1/2 years prior to the remission. Gradually after 6 years of a healthy life, it slowly started to come back. I had my share of medrol pacs and finally celebrex for the past few years and in Aug of 2002, I really started to flare and have been since. I have started on remicade in Oct. some improvement, but still have the temps and fatigue off and on. I dont have mtx in it yet, not sure why..I will call rhemi tomorrow(hes been away) after everything i have read about remicade with mtx, maybe that will help. I just wanted to say Hi to everyone and please hang in there. Thank you for this web site and for all the sharing it really does help a lot!(where were you in 1988?) Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2003 Report Share Posted January 20, 2003 Welcome Pat. It is always good to know there are many that understand itsn't it? I use the nickname Melt, yes stands for PattyMelt :0) I have had Stills since 1977, what were you doing then? In 1988 I was fortunate to be working, and doing well. Since then I have had more activity also but always hanging in there with the best attitude I can muster. Enough about me, again Welcome, we shall look forward to knowing a new friend. Melt in So.Cal. > Hi my name is Pat, I have been a lurker for the past 3 weeks. I love > this site already. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2003 Report Share Posted January 20, 2003 > Hi Therese.... It's so nice to meet you! We live in Manson, WA on Lake Chelan. I know there are other Washingtonians on this list also. I hope they write. My daughter, 7, has not been dx'd with ASD, but shows many charactaristics. She's doing terrifically though, especially since we started a bunch of sensory stuff with her. She's verbal, but hard to understand. Says 2 to 3 word sentences. This group is great! I hope you'll read and join in a lot. I think we all love to hear about every one else's kids. We leave for Puerta Villarta tomorrow, so if I don't respond soon, that's why. WELCOME! mom to 7 ds, Ty 9 and Kelsey 11. Hello, > > My name is Therese. My daughter , has DS and has recently been > diagnosed with PDD (PDDNOS). I have been tuning into the group posts for the > last few months as we went through the diagnostic process. is 12 years > old and I feel a little guilty that she has just been diagnosed. It was > actually a new teacher this year that suggested that displayed many > autistic behaviors. I found the Disabilities Solutions Issue on DS- ASD and > Joan¹s article and that was a turning point for us. (Thanks Joan!) Up > until then, I knew was not like other DS kids but I didn¹t have a clue > as to why. > > We live in Seattle, Washington with Ken (Dad), and ¹s two sisters, > (18 yo- away at college) and (15 yo). attends a > public middle school here in a self-contained classroom that uses > life-skills and visually based communication models. Our big focus > educationally is communication, behaviorally it is getting her to socially > interact with others. is non-verbal and uses a communication device > with some success, especially when highly motivated by things like, ordering > at Mcs, etc. She loves every Disney movie ever made, listening to > music, drawing, cooking, swimming, bowling, boating, going to the ocean > beach and playing with her dog, Cody. > > My biggest challenges are handling ¹s care and juggling a full- time job > while my support systems are eroding. My mother in law, who used to be my > ³crisis² sitter is now in a nursing home. ( My side of the family all live > 1500 miles away.) My oldest daughter, who adores , is now away at > college and my 15 year old helps out but is so involved with her own > activities now that she¹s seldom available. So I need to make that big leap > of faith into getting a respite care system set up soon. I¹m having a tough > time with it. > > At first, this dual diagnosis made me very sad but somewhat relieved to > finally know what was really going on with my daughter. It also helps to > know there are other parents out there facing similar challenges. I look > forward to getting to know all of you and your children. > > Therese > > Mom to (DS-PDD) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2003 Report Share Posted January 20, 2003 Hi Tricia, I really dont know what caused the remission to end...I asked myself that question over and over..work? sadness..I have 2 close friends that lost their son(17 yrs old) and the other one lost her son in law of 5 months. . so there was a lot of sadness, Im not sure...buts its back... I live in MA with my husband of 30 years(this Oct.)and my 16 yr old daughter. I have 2 sons that live next door to me, one is married. Its nice to have someone to talk to about the illness.. Thank you for welcoming me to the group...How about your self ..do you live with family? Bye for now Pat > > Welcome to " Stilligan's Island " support group Pat! > It sounds as if you are no stranger to this disease. > I was diagnosed in 1987. (although I had the disease > many years before that.) I am sorry for you that your > remission of 6 years ended, but hopefully with some > of the newer meds now available, you will get back > into another remission, even it it is with meds. What > do you think caused the disease to come back after > 6 years?? > > Isn't it great to find others with this Stills Disease?? > Not that we are happy that others are ill..just that it > makes the " dragon " a little easier to drag around > day after day, when we know we aren't doing it alone. > > You probably already know how informative, and > wonderful this group is. We even have fun from > time to time. > > Where do you live Pat?? Do you live alone or with > family? > > Anyhow ...again, welcome!!! > > ~~tricia~~ > > Wisconsin > > ] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2003 Report Share Posted January 20, 2003 Hi melt, thanks for the welcome, yes it is good to know that there are people who understand the illness..1977..hmmmmm.I had just had my first son in 1976.... ...did they dx you right away? Im just interested because it took my primary care forever to refer me to a rhemy, who by the way dx me almost immed. I also look forward to making many new friends here and enjoying your company. thanks,Pat > > Hi my name is Pat, I have been a lurker for the past 3 weeks. I > love > > this site already. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 Welcome Pat!!!!!! Better late then never, ( regarding 1988)These people are fabulous, and nuts. { in a good way of course.} Let me know if you need anything! See ya around the wading pool. G.otF.M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 Hi Pat, you can reply to a message or post a new one but the easiest is to reply to someone's post but remember to trim the message to the part you are answering and delete the rest so the new email doesn't compile so much clutter in others mail boxes. Yes, my doctors called in my rheumy after 2 1/2 weeks in the hospital and he diagnosed me right away. He was from San Diego, CA and except for a couple of years when I moved has been my doctor, my savior ever since. With the new medications maybe yours and mine will settle down again. I really do believe stress is a major factor with this disease. Till soon, Melt Re: new member > ..did they dx you right away? Im just interested because it took my > primary care forever to refer me to a rhemy, who by the way dx me > almost immed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 Hello Pat, and a very special welcome to you and I am glad that you have joined this incredible support group. I am so sorry that you have been dealing with Stills for so long, but it was very comforting to read that you have also experienced a remission time of 6 years. I will remember those words and hope for the same. Thank you for being so positive. I look forward to getting to know you better. Sincerely, Sue #2 -- new member Hi my name is Pat, I have been a lurker for the past 3 weeks. I love this site already. I was diagosned in 1988, by a rhemi, and I really thought I beat this disease. For those of you out there that think a remission wont come, please have faith, it very well may...I was in remission for at least 6 years!!!(you really do lose track when you are feeling great as to the length of time) I mean a full remission..no meds..this was after 2 hip surgeries(I had a core decompression done in both hips) this was due to AVN of both hips from the high dose of predisone I was on. When I finally came off that and tried gold shots(had severe reaction) then went to MTX for 2 1/2 years prior to the remission. Gradually after 6 years of a healthy life, it slowly started to come back. I had my share of medrol pacs and finally celebrex for the past few years and in Aug of 2002, I really started to flare and have been since. I have started on remicade in Oct. some improvement, but still have the temps and fatigue off and on. I dont have mtx in it yet, not sure why..I will call rhemi tomorrow(hes been away) after everything i have read about remicade with mtx, maybe that will help. I just wanted to say Hi to everyone and please hang in there. Thank you for this web site and for all the sharing it really does help a lot!(where were you in 1988?) Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 Hello Pat and welcome im also fairly new to group just DX in early oct.To answer where was i in 1988 well i was 12 yrs old and bundle of energy i was prob everywhere!!!!! d.Canada new member Hi my name is Pat, I have been a lurker for the past 3 weeks. I love this site already. I was diagosned in 1988, by a rhemi, and I really thought I beat this disease. For those of you out there that think a remission wont come, please have faith, it very well may...I was in remission for at least 6 years!!!(you really do lose track when you are feeling great as to the length of time) I mean a full remission..no meds..this was after 2 hip surgeries(I had a core decompression done in both hips) this was due to AVN of both hips from the high dose of predisone I was on. When I finally came off that and tried gold shots(had severe reaction) then went to MTX for 2 1/2 years prior to the remission. Gradually after 6 years of a healthy life, it slowly started to come back. I had my share of medrol pacs and finally celebrex for the past few years and in Aug of 2002, I really started to flare and have been since. I have started on remicade in Oct. some improvement, but still have the temps and fatigue off and on. I dont have mtx in it yet, not sure why..I will call rhemi tomorrow(hes been away) after everything i have read about remicade with mtx, maybe that will help. I just wanted to say Hi to everyone and please hang in there. Thank you for this web site and for all the sharing it really does help a lot!(where were you in 1988?) Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 Hi Pat, Stress is what brought me out of a nice remission back in 1979. Sounds like you have a very nice family, and I'm glad your sons live next door. If you'd like to read about my " history " please go to www.stillsdisease.org and click on " member histories " and then click on " Tricia Looker. " I look forward to getting to know you better! ~~tricia~~ Wisconsin ***************************************************************************** ********** Hi Tricia, I really dont know what caused the remission to end...I asked myself that question over and over..work? sadness..I have 2 close friends that lost their son(17 yrs old) and the other one lost her son in law of 5 months. . so there was a lot of sadness, Im not sure...buts its back... I live in MA with my husband of 30 years(this Oct.)and my 16 yr old daughter. I have 2 sons that live next door to me, one is married. Its nice to have someone to talk to about the illness.. Thank you for welcoming me to the group...How about your self ..do you live with family? Bye for now Pat .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 Hi Pat, Stress is what brought me out of a nice remission back in 1979. Sounds like you have a very nice family, and I'm glad your sons live next door. If you'd like to read about my " history " please go to www.stillsdisease.org and click on " member histories " and then click on " Tricia Looker. " I look forward to getting to know you better! ~~tricia~~ Wisconsin ***************************************************************************** ********** Hi Tricia, I really dont know what caused the remission to end...I asked myself that question over and over..work? sadness..I have 2 close friends that lost their son(17 yrs old) and the other one lost her son in law of 5 months. . so there was a lot of sadness, Im not sure...buts its back... I live in MA with my husband of 30 years(this Oct.)and my 16 yr old daughter. I have 2 sons that live next door to me, one is married. Its nice to have someone to talk to about the illness.. Thank you for welcoming me to the group...How about your self ..do you live with family? Bye for now Pat .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 Hi Judy, My name is Carmen and welcome to our family. I went through a zillion and one tests at home and then was sent to Mayo Clinic where they finally diagnosed me with Stills Disease. That was seven years ago and I've had a few remissions but since last year, no more.... ( I find that Prednisone does the best for me. I am currently taking Prednisone, MTX and Enbrel. I tried Remicade and it did not work at all. It will probably be a hit and miss for you like all of us. You'll find the right drug or drugs, hopefully. I'm glad to read that you've been pulling up our posts and it is reassuring to find that others are going through what you are and there is so much help and understanding in this group. Let us know how you are faring from time to time. Join our chats also. xxoo Ca. Carmen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 Hi again, Judy, I forgot to ask you where you live? I'm in Palm Spring, California, down in the desert and Pattymelt is just above me on top of the mountain. xxoo Ca. Carmen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 Dear Judy, Welcome to the group! Though I'm sorry you had to find us! I am 35 and was diagnosed this past summer after being sick for the previous year. This group has been extremely supportive and full of advice. I don't know much about Remicade, and I'm sure there are others here who do know a lot. But I know the different drugs I'm on (Methotrexate and Plaquenil among others) took a long time to become effective. It is possible that the same is with Remicade. maybe someone out there reading this knows...or has your doctor said anything about how quickly it should bring you relief? I know that after feeling sick for so long I wanted to feel better QUICKLY! But it was helpful to know that it would take a while before there was an obvious effect. I am also on Prednisone and that helped my inflammation and pain quickly. Please feel free to share more with the group, as you wish. I hope you get a lot of pain relief soon! Feel good, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 Hi Judy, My name is Dave and I would like to welcome you to our Support Group. Any time you need to " VENT " you can do it with us thats what our great group is all about. Take care. I hope you feel better. And welcome again !! Sincerely Dave, from South Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 Brrrrrrrr....Judy. I see where the East has been hit hard with freezing weather. My son leaves for work around 6:30 in the morning and says it's been below zero for the last week. He's in Michigan where we spend the summers but have stayed longer so my husband can do some snowmobiling. I stay in the house and read.. ) I shall try and blow some warm air your way. It was 85 today which is a bit too hot for me to do anything outside. It gets to be around 120 in the summer so we take off from here around April. Just in time to enjoy all the spring flower.....TULIPS......are you reading this, Sue? ) My favorite time of year! Stay warm, xxoo, Ca. Carmen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 Carmen Thanks for the email. I am from Collegeville, PA. It's been below freezing for the past two weeks. The desert sounds great to me. Judy Moyer, Paralegal Villanova University School of Law Farmworkers Legal Aid Clinic/Civil Justice Clinic Phone: 610-519-4123 Fax: :610-519-5173 E-mail: moyer@... The contents of this e-mail message and any attachments are intended solely for the addressee(s) named in this message. This communication is intended to be and to remain confidential and may be subject to applicable attorney/client and/or work product privileges. If you are not the intended recipient of this message, or if this message has been addressed to you in error, please immediately alert the sender by reply e-mail and then delete this message and its attachments. Do not deliver, distribute or copy this message and/or any attachments and if you are not the intended recipient, do not disclose the contents or take any action in reliance upon the information contained in this communication or any attachments. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 Welcome Judy! So, reading our posts has helped to keep you sane?? Okay then..we are doing better than expected! It does sound as if you have the AOSD. I think it's kind of a good thing to have a doc who's wife has the disease. He should want to learn everything he can about it. Do you have any idea if his wife is familiar with this support group?? They both might appreciate looking through the listed info on the site. www.stills.org I have not been on the Remicade. There are several members who are. I do think that it sometimes takes a few weeks to see/feel results. If it turns out that the Remicade does nothing, then I am sure your doctor will change you to something else. Did he happen to tell you what his wife is on? Where do you live Judy?? It's kind of interesting for us to sort of picture in our minds where the person is living. Again, welcome!!!! ~~tricia~~ Wisconsin -- New Member Hello All, My name is Judy Moyer, I am 39 years old. In July of 2002 I became very fatigued with muscle and joint pain. After my blood test (CBC) done by my primary dr. came back he said he suspected AOSD. (his wife also has it). He immediately started me on pred and sent me to his wife's RD. The RD sent me for every test (i.e. gastro, scans) under the sun (which all came back normal). It seems that since I don't have the rash and my ferritin level is only 2L but I have all other symthoms he hasn't officialy diagnosis Stills. I started Remicade last week still not any better. I have been a lurker since July. It has kept me sane to know other people are feeling the same way and not realy crazy. -My Birthday Feb. 12 Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 hi therese and katie!!! IT is hard with supportive comunity living, respite, medcaid, mrhome health aids, often i catch myself thinking or worring about nathan but one thing is it does help!!!! The only problems we are running into is summer hoursfor june and july, cause its at least 8-9weeks of mon-fri 7am - 5pm cares, and nathan is getting the max alloted, so now im am furthering my degree for more $$$ so i can take off or cut to part part time just for those couple months. I am getting worried, cause he is 11 turning 12 this summer and too old for day care one, grandma cant handle him for too long of a period (a couple hours ) anymore, and in todays financing most families need two incomes. I too often struggle between his cares and my personal goals/roles. In fact at my last work review i had all great and some commendables for points the ONLY bad thing to work on was taking many days off for ill son. SO i did remeind them and they wrent unhappy or anything they just have to keep everything how it is.... on paper, and it gives us something to work towards to i guess. shawna. New Member Hello, My name is Therese. My daughter , has DS and has recently been diagnosed with PDD (PDDNOS). I have been tuning into the group posts for the last few months as we went through the diagnostic process. is 12 years old and I feel a little guilty that she has just been diagnosed. It was actually a new teacher this year that suggested that displayed many autistic behaviors. I found the Disabilities Solutions Issue on DS-ASD and Joan¹s article and that was a turning point for us. (Thanks Joan!) Up until then, I knew was not like other DS kids but I didn¹t have a clue as to why. We live in Seattle, Washington with Ken (Dad), and ¹s two sisters, (18 yo- away at college) and (15 yo). attends a public middle school here in a self-contained classroom that uses life-skills and visually based communication models. Our big focus educationally is communication, behaviorally it is getting her to socially interact with others. is non-verbal and uses a communication device with some success, especially when highly motivated by things like, ordering at Mcs, etc. She loves every Disney movie ever made, listening to music, drawing, cooking, swimming, bowling, boating, going to the ocean beach and playing with her dog, Cody. My biggest challenges are handling ¹s care and juggling a full-time job while my support systems are eroding. My mother in law, who used to be my ³crisis² sitter is now in a nursing home. ( My side of the family all live 1500 miles away.) My oldest daughter, who adores , is now away at college and my 15 year old helps out but is so involved with her own activities now that she¹s seldom available. So I need to make that big leap of faith into getting a respite care system set up soon. I¹m having a tough time with it. At first, this dual diagnosis made me very sad but somewhat relieved to finally know what was really going on with my daughter. It also helps to know there are other parents out there facing similar challenges. I look forward to getting to know all of you and your children. Therese Mom to (DS-PDD) Quote Link to comment Share on other sites More sharing options...
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