PJ is almost five months old and has Down Syndrome. He was born with an imperforate anus and was taken from me at birth and rushed to children's Hospital for
emergency surgery. He had an infection and almost didn't make it. I feel blessed everyday that he is alive and well. He still has two more surgeries to go. PJ is my youngest of 5 boys. My third son, Joey, also has a learning disability. He has dyslexia, an expressive language delay, apraxia, and is ADHD. I have also started a blog at patrickandhisbrothers.wordpress.com.
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Down syndrome
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Getting to know each other!!!
Discussion started by suelmayer@earthlink.net , on 16 February 07:46 AM
Take a moment and introduce your child and your family.
Sam is 10 years old, he has a brother Ben (16) and sister Danielle (13). He is the joy and source of daily smiles in our family. Sam has Down syndrome, a brain injury, apraxia, dysphagia, respiratory/immune issues, bi-lateral conductive hearing loss and his recent diagnosis of hip dysplasia and Perthes. I have written about my journey with my children on my blog www.suemayer-specialneedsmom.blogspot.com.
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Ryan is 18. he has autism with slight mr. he is my joy! i love him beyond words! his main mental issues are ocd and social anxieties. he talks enough to let me know if he is sick or what he wants or needs but other than i love you mom. he doesn't have alot of spontaneous speech. he has gi issues. some days diarrhea, some constipation. plus anal phishers. he has polypoid cystitis, kidney stones and a heart murmur. Ryan had a gran mal in 2009 that i believe was caused by seroquel. (or the combination of that with other meds) he still has tremors from that time. ryan is still on anti seizure meds now, but has had no other seizures since coming off that med. he has to be on miralax daily due to meds(sometimes needing enemas and suppositories). when ryan was first diagnosed the said he may never speak and would probably live in diapers. i am relieved to say, they were wrong!( though i have some big messes at times! ) Ryan loves dinosaurs and is a walking encyclopedia of knowledge, on this subject! he adores swimming! fishing, the witte museum, zoo's. he loves to google museums, godzilla and old tom and jerry cartoons. he loves all the old godzilla and all disney movies, animal planet and discovery channel. he is very funny about alot of foods textures and temperatures! Ryan has very distinctive taste buds. he knows the difference and prefers ground sirloin to regular hamburger. he often has problems with his appetite so i started him on ensures last year. this gives me some piece of mind that when he doesn't eat like he should. at least he is getting nutrients and vitamins. he is very sensitive to lights and sounds. noisy cafeterias at school can really spin him up! he was very hard to get to sleep for years( hyper-active at night) but now it seems, he is on a good regimen( this has taken years). many of ryans medical problems started at puberty. this has been ongoing since 2006) he makes me smile and sometimes laugh, everyday! and is so funny with how literal he can be! it is alot of work, but i feel very blessed. to have, such a beautiful angel on earth!
Wednesday, 27 July 2011 21:47
My son, Terry is very independent. I remember one night at a dance at the school that I helped put on. Terry was not dancing....he loves to dance and is good at it. I thought that maybe he was shy. I asked him to dance with me and he said no. Of course I was a little hurt. I asked him why he was not dancing. His answer could have flatten me...he said "because I am not like them!" The moral of this story....watch what you wish for. He does not think that he has a disability or that he is that different from any one else. We always treated him like everyone else and that is how is thinks. Not bad after all...just the truth.
Friday, 08 July 2011 12:22
Thanks Riley's Mom, I also checked out and loved your blog. Riley is a handsome little guy!
Thanks for the sign language link.
Val, please share with us...you have a wealth of knowledge from your life and experiences.
Melissa, please do and I hope Bright Beacon gets more and more parents involved.
Thanks for the sign language link.
Val, please share with us...you have a wealth of knowledge from your life and experiences.
Melissa, please do and I hope Bright Beacon gets more and more parents involved.
Thursday, 07 July 2011 19:11
Hi Sue, Thanks for this post! I work with Bright Beacon and I am collecting some stories from users for potential blog entries. I will check out your blog and would love to hear more from you. Best wishes!
Thursday, 07 July 2011 16:54
Your blog is beautiful! My son, Riley, is eight. He experienced a grade Iv brain hemmorhage in utero which left him with multiple disabilities. I recently started blogging myself at http://rileys-smile.blogspot.com/.
Tuesday, 12 April 2011 21:18
You need to check out my blog for Special Needs. Sign Language helps many of them as you will see on my blog as well as hearing children.nI cannot open your link
www.signwithmeva.blogspot.com
www.signwithmeva.blogspot.com
Thursday, 24 February 2011 22:04
I hope that I can help this group with the experiences that I have live through. I have a son with DS who is 36 years old and a daughter with MS who is 34 years old and I have TBI and am mmmm years old.
Let's talk.
Val
Let's talk.
Val
Wednesday, 16 February 2011 17:36