Guest guest Posted September 5, 2007 Report Share Posted September 5, 2007 Welcome Kerri My son is 8, with the dual diagnosis DS/PDD but not verbal. It is hard because he gets frustrated so easily when no one understands. You will find this group awesome for information. Holly New to the group Hi everyone, I am new to the group. I have 3 children - my girls are 14 and 10 and my son is 8yrs with DS and possible spectrum disorder. We are having more testing done in December. A little bit about Jake: he was born 2 months premature and weighed 3lbs 7 oz. He stayed in the NICU for 2 months. He has had many medical issues which has resulted in 21 surgeries. He was born with tetralogy of fallot with a double outlet right ventricle and an ASD - he was repaired at 6 months and just had his pulmonary valve replaced and his right ventricle reconstructed May 21, 2007. He has had 10 sets of ear tubes, UPPP, nissan fundoplication/pyloraplasty with G-tube and has severe sleep apnea and is on bi-pap every night. Despite all his medical issues he is reading, writing, doing math and has a wonderful memory. The teacher was going over everyone's street address in the class and in one week Jake could recite everyone's address including zip code!!! That got me thinking that maybe there is something more going on. Jake is very verbal and has a wonderful sense of humor. At times he has a very hard time paying attention and can be impulsive. He does stim at times with his stuffed animals and has some OCD qualities. He likes routine and he can recite many movies and songs. I would love to connect with others that are experience these same issues. Thanks, Kerri Rochester, NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2007 Report Share Posted September 5, 2007 Welcome Kerri, << At times he has a very hard time paying attention and can be impulsive. He does stim at times with his stuffed animals and has some OCD qualities. He likes routine and he can recite many movies and songs.>> These types of things can be typical for any DS child but can become a problem when they interfere with learning. Jake certainly doesn't sound like he has any learning problems!! You must be very proud of him. And what a brave boy and family to have traversed the maze of severe medical complications and to have all survived. If he does have any Autistic tendencies it sounds like he may have some hyperlexia issues (which in my mind sounds good) or maybe he's even a little savant! Does he use his memorized movies and songs to script? ie to respond to conversation? Anyway, you're very welcome here...I'm Sherry in Florida mom to dtr 18 DS-Autism and Crohn's. We now call her the " sourpatch kid " cause sometimes she's sweet and sometimes she's SOUR. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2009 Report Share Posted July 28, 2009 Hello all, My name is Kathy I am 35 years old from Northern Ca. I have a two year old son with DS named . My husband is . We are 16 weeks pregnant and will be having another child a girl this time that was also diagnosed as having DS. Both are trisomy 21 and not genetic. We did not know about until about a week after birth. When we got pregnant again we did a full screening and found out early that she had it too. I know this group is for twins and triplets and adoptive multiples. I was wondering how many other families were out there that had more than one birth and were found to be non genetic. We will be at the conference this weekend and would like to maybe meet you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2009 Report Share Posted August 2, 2009 Welcome Kathy, Although our family is different than yours, we will keep you in our thoughts for a safe delivery of your little girl. Our family has four kids with the youngest ones are twins Tommy (Ds) and Liam who are two year old toddlers. Welcome! Sandi McMillan www.tommyupdate.blogspot.com > > > > Subject: New to the group > To: Multiples-DS > Date: Tuesday, July 28, 2009, 12:19 PM > > > > > > > Hello all, > My name is Kathy I am 35 years old from Northern Ca. I have a two year old son with DS named . My husband is . We are 16 weeks pregnant and will be having another child a girl this time that was also diagnosed as having DS. Both are trisomy 21 and not genetic. We did not know about until about a week after birth. When we got pregnant again we did a full screening and found out early that she had it too. I know this group is for twins and triplets and adoptive multiples. I was wondering how many other families were out there that had more than one birth and were found to be non genetic. We will be at the conference this weekend and would like to maybe meet you. > Quote Link to comment Share on other sites More sharing options...
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