Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 In a message dated 8/28/02 8:21:24 AM Eastern Daylight Time, mick8_7@... writes: > I have a 2year old ds/asd complete av > canal repair 1 year ago.We just discovered Mic has 16 symptons of > asd. and I am lost scared and confused.I just got the ds/heart under > control and now this Hi Laurie, The good news is you have found out early. This group is great and you will learn a lot. Disability Solutions Newsletter is a good start. I hope someone will show you how to get to that site. I am still finding my way around so not to much help there. There are many interventions that will help. You will have a lot of reading to do. Welcome.. Diane (mom to Rochelle 6-ds/asd/celiac and Danny 8-ld/asd) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 Welcome Laurie, I am glad you wrote, I think the best thing I did was to start reading all the things the people on this list are writing, you cannot imagine how much you will learn because these folks have so many great ideas and are feeling what you are, some have older kids and some younger, it doesnt matter, cause we are all family. I know you feel overwhelmed right now, this will get better, give yourself some time, then when you feel ready to dig in, ask all the questions you want, cause this group knows. If they dont know then they will just be here to support you, God Bless you, Dawn, 5yrs. asd/ds (so glad that the heart problem is under control now!) > Hi, My name is laurie drago I have a 2year old ds/asd complete av > canal repair 1 year ago.We just discovered Mic has 16 symptons of > asd. and I am lost scared and confused.I just got the ds/heart under > control and now this.It seems to me asd is alot more confusing than > ds.Its been less than a week the eval was done and my mind is hiding > somewhere and I cant find it.Any sites /groups or advice is needed > and would be greatly appreciated.Thank you Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 Hi Laurie- I remember that feeling when my " typical " twin, got the PDD diagnosis. He was just 26 mos old then, and I was already overwhelmed with s DS and trying to do everything I could for all of my kids. It really felt like I got kicked in the stomach. I went home and cried for for about a day and went to my first support group meeting less than a week later. What struck me about this group was the level of education of the women in the room. I was not expecting that. It was not a touchy-feely " i know how you feel " group, but rather a " you need to do this and this and this " group. It was empowering to see that there were things I could do to maybe improve 's situation, particularly because he was so young. That's when I started to learn to advocate for my kids. Incidently, is no longer on the Autism Spectrum, and will begin a regular ed kindergarten program with only minor modifications next week. Learn as much as you can, try as many things as you can even if you're not sure it will help. I used the " I don't want to regret anything later " fear to motivate me to keep me on top of things. Consider professionals a resource, but you are your child's only true advocate. Good Luck! Ruth, mom to Shauna, 7, twins Mike (PDD) and (DS/PDD?) 6, and who will be 1 on Saturday. > In a message dated 8/28/02 8:21:24 AM Eastern Daylight Time, > mick8_7@y... writes: > > > > I have a 2year old ds/asd complete av > > canal repair 1 year ago.We just discovered Mic has 16 symptons of > > asd. and I am lost scared and confused.I just got the ds/heart under > > control and now this > > Hi Laurie, > The good news is you have found out early. This group is great and you will > learn a lot. Disability Solutions Newsletter is a good start. I hope someone > will show you how to get to that site. I am still finding my way around so > not to much help there. There are many interventions that will help. You will > have a lot of reading to do. Welcome.. > Diane (mom to Rochelle 6-ds/asd/celiac and Danny 8-ld/asd) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 Hi Laurie, Wecome to the group. You came to the right place for support and guidness. My name is Pam and I have identical twin girls with DS. Their names are Hannah and and also has ASD. They are 7 years old and just got diagnosed in April. I knew there was something different about her after age 2 because she was not progressing as fast as Hannah was. Every time I brought up my concerns to the peds. the brushed it off as she having more of the " downs " in her. But I knew in my heart that wasn't true. Anyway, I fianlly got her to the right doctor and to me it was a relief to know she had autism because we could then get her the right treatments. Plus I love proving somebody wrong!! lol I know this is hard on you. Read all you can and ask us as many questions as you can think of. We would all be happy to help. I learn something new all the time. There are no stupid questions. I'm know you are glad to get the heart surgery out of the way and very happy he is doing so well. My Hannah had heart surgery when she was 3 months old. It was a very scarey time!! She is doing great now!! If you could get Mic into some kind of Applied Behavior Analysis therapy it would be a good start. And he will still need ST, PT, and OT. And I would focus more on the ASD instead of the DS. Get down in the floor and play with him as much as your time will let you and try to get him to make eye contact with you. There are different ways of doing this. Use something he really likes like a toy or music to get his attention. Like I said, Read all you can about the treatments for ASD and go from there and ask ALL the questions you want. You will get great advice here. I know I have. WELCOME!!! It will get better in time once you have your facts straight and set some goals. Pam mom to identical twins Hannah (DS) and (DS-ASD) age 7 mick8_7 wrote: Hi, My name is laurie drago I have a 2year old ds/asd complete av canal repair 1 year ago.We just discovered Mic has 16 symptons of asd. and I am lost scared and confused.I just got the ds/heart under control and now this.It seems to me asd is alot more confusing than ds.Its been less than a week the eval was done and my mind is hiding somewhere and I cant find it.Any sites /groups or advice is needed and would be greatly appreciated.Thank you Laurie -------------------------------------------------- Checkout our homepage for information, bookmarks, and photos of our kids. Share favorite bookmarks, ideas, and other information by including them. Don't forget, messages are a permanent record of the archives for our list. -------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 welcome laurie, this is THE PLACE to be for ds/autsim, my name is shawna, i have two boys, nathan is 11years old with ds, autism, add/hd, ocd etc and nichlas who is 9yrs with LD/dyslexia? anxiety disorder/depression. the prime thing is you have found out at a very early age this is great for planning his education and splecialized therapist help. welcome to the group. shawna. --- mick8_7 <mick8_7@...> wrote: > Hi, My name is laurie drago I have a 2year old > ds/asd complete av > canal repair 1 year ago.We just discovered Mic has > 16 symptons of > asd. and I am lost scared and confused.I just got > the ds/heart under > control and now this.It seems to me asd is alot more > confusing than > ds.Its been less than a week the eval was done and > my mind is hiding > somewhere and I cant find it.Any sites /groups or > advice is needed > and would be greatly appreciated.Thank you Laurie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2002 Report Share Posted August 29, 2002 Welcome, Laurie ~ You are among friends and lifelines here and I'm so glad you've found this list. Like many here, I have been through the denial phase of knowing Duncan (6 years old with ds/pdd) had this additional challenge, but just not being able to cope with the feelings of how enormous it seems. Like all things that can overwhelm? Take a step at a time, day at a time with this resource to help you add and enchance and try things. Like the wise ones here have told you - the autistic issues are the focus for you - ds is secondary (except medical issues related...Duncan had a full repair of an av-septal defect when he was four months old and I can relate to feeling like okay...ds AND heart surgery with meds leading up to it...ICU...now Austism? Not fair! His plate has had plenty! Put life isn't fair and meanwhile we get on with the living part and we are all here to help in any way we can. You are never alone. This list helps me so much remember that when there are tough days. Hang in there! Ann PS: Where do you live, Laurie? It's always nice for us to know logistically where we are - could be you have a friend close by for a visit! I'm in Washington, DC. > Hi, My name is laurie drago I have a 2year old ds/asd complete av > canal repair 1 year ago.We just discovered Mic has 16 symptons of > asd. and I am lost scared and confused.I just got the ds/heart under > control and now this.It seems to me asd is alot more confusing than > ds.Its been less than a week the eval was done and my mind is hiding > somewhere and I cant find it.Any sites /groups or advice is needed > and would be greatly appreciated.Thank you Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2002 Report Share Posted August 29, 2002 Welcome Laurie, What more could I add to what everyone has mentioned and definitely agree WE are all not alone and this has been a Godsend. Thank God, you found out the second dx. My son is 14 and when he was 12 is when I ran across the Disability Solution Newsletter which has open many doors. I've learned to search and understand this second dx's characteristics that applied to my son which has enable me to begin seeking support, programs, & treatment needed. So learn as much as you can about the dx and how it affects your child. It is nice to know that there are others who have been through this road and who can be of an assistance in helping. Is your child enrolled in Early Intervention? Take care & once again WELCOME! Irma,14,DS/ASD > > Hi, My name is laurie drago I have a 2year old ds/asd complete av > > canal repair 1 year ago.We just discovered Mic has 16 symptons of > > asd. and I am lost scared and confused.I just got the ds/heart > under > > control and now this.It seems to me asd is alot more confusing than > > ds.Its been less than a week the eval was done and my mind is > hiding > > somewhere and I cant find it.Any sites /groups or advice is needed > > and would be greatly appreciated.Thank you Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 In a message dated 8/28/02 5:21:24 AM Pacific Daylight Time, mick8_7@... writes: << Hi, My name is laurie drago I have a 2year old ds/asd complete av canal repair 1 year ago.We just discovered Mic has 16 symptons of asd. and I am lost scared and confused.I just got the ds/heart under control and now this.It seems to me asd is alot more confusing than ds.Its been less than a week the eval was done and my mind is hiding somewhere and I cant find it.Any sites /groups or advice is needed and would be greatly appreciated.Thank you Laurie >> Welcome Laurie. You've found the best group for you and Mic. Gail :-) Quote Link to comment Share on other sites More sharing options...
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