I'm Khris, SAHM and homeschooler to Jack who is now 7 and has Asperger's Syndrome and possibly Bi-Polar disorder, and Lucy who is 3 with Post Trumatic Stress (medical).
Welcome one and all!
Looking forward to getting to know all of you!
We adopted Dylan from birth and he has fetal alcohol spectrum disorder. His special needs range in that he has sensory issues, ADHD, and he has very aggressive tendencies that can turn violent. Dylan is also developmentally way above his physical age cognitively and physically which makes parenting often very difficult.
Hi everyone, I'm Jesse! Mama to Violet and Zoe. Violet is 2.8 years and Zoe is nearly 5 weeks old.
Violet has some pretty serious speech delays and possible hearing loss--we are in the process of getting her evaluated. She has a speech eval. tomorrow and a hearing eval. later in the month.
Its a scary time for us.
My dear son #2 aka Babyzilla is age 6
Expressive Receptive Language Disorder
Sensory Integration Disorder
though he is waiting for his final OT and Speech appts. the ice storm here killed them as scheduled!
My teen has ADHD and still has a touch of ODD from time to time.
Its nothing like it used to be
Like Khris we homeschool all four of our munchkins
I also have a 21 month old who was full term but is not devoloping speechwise b/c he has "innapropriate role models" :
okay that's it for now...
I'm Andrea - I have three boys - 12 year old twins & an 11 year old
I am mom to 3 kids, ages 2, 4, and 7. My 7yo has Tourette's Syndrome and occasional bouts of OCD. We are homeschooling him for first grade after public schooling him for kindergarten.
I'm glad this forum is here. I do not post often, but I am a big reader. Just wanted to let everyone know I'm here, and I'll try to be better about posting. I'm on the quiet side in real life, too !
i have often posted here about my best friend's daughter, hannah. she was dx in 2001 with pdd. i have known her since her birth & she is closer to me than if she were my niece.
i am so excited because i have just been hired as hannah's in home mental health aide. 20-30 hrs. per week i will be in her home, helping her, playing with her, just loving her. she is amazing. i am planning to just follow her around & do whatever she does, all day long. i sat with her, on her dining room table one day, & stacked plastic cups w/ her over & over again. i kept thinking, why am i having SO much fun?! but i was!
a friend has a child w/ down's syndrome, she was w/a group of her friends who were all discussing their children. one of them all of a sudden looked at her & said, oh, we are SO sorry. she was like, sorry for what? they were apologizing for talking about their "normal" kids in front of her. she is so awesome, she said, don't apologize to me, i feel sorry for YOU! not one of them has a relationship w/ her kids like she has w/ hers.
i tried & tried the other day to MAKE myself feel sorry for hannah, & i truly could not think of one reason. she is amazing.
peace & love to you all in your journeys. i am so glad this forum is here!
Glad there's a board here for me.
I also have an extensive background in working with and advocating for Individuals with special needs. I managed a group home for some time and then worked as a technician and evaluator in an Assistive Technology Center. We worked with people of all ages and disabilities and did assessments, evaluations, implementation and training for the local school systems.
glad to "meet" everyone!
my daughter is almost fourteen months old and she has down syndrome (as you may have noticed from my little replied shout out to all the ds mamas )
i'm glad to meet you and hope that we become a support to one another.
~ star baby
He's done pretty well, but had breathing issues at his first stay in the hospital (was way too doped up on coedine, so second time around we made the nurses be careful about the doseage) and then didn't eat for five days after his second surgery and got dehydrated, so he had to have an IV (the original one from surgery he kicked out of his leg) put in his head. He couldn't breastfeed at birth (couldn't form suction), so I've been pumping for 7 1/2 months, feeding him with a special cleft nurser. He's been a tough scar-former so the surgeon thinks he needs more lip revisions.
He might be done with all his surgeries when he's in his early 20s. He's got lip revision at 3 yo, bone graft & lip revision at 8, braces maybe at 8, rhinoplasties (nose jobs) that won't start til 16, and then I think he'll get a tooth implant at 20-something for the section of gum he's missing. He'll also probably need agressive speech therapy. He's a great baby though, loves his mommy and rides in the sling.
My 5 year old has also always had sensory issues, but I think we didn't notice them for a long time because she was cognitively and physically advanced for her age. She seems to be mastering a lot of her issues with age and attention, which is great.
We homeschool, and for our family, this is the best situation for the girls continued growth and development.
I'm looking forward to spying on the collective wisdom of all of the mamas here, and hopefully adding a bit of my own
The truest answer to violence is love. The truest answer to death is life. The only prevention for violence is for the heart to have no violence within it. We cannot prevent evil through any system devised by mankind. But we can grapple with evil and defeat it, but only with love—real love.
I previously spent time on the TTC boards and then the Pregnancy boards here, but since Sam was born in December haven't logged in more than a couple of times. I felt like my issues were too different, I guess (plus, who has time when they are caring for an infant?). What I'm trying to say is I was very happy to find this forum tonight.
I just realized the other day that for the first time since Sam was born, I am 100%, completely, totally okay with the fact that he has Down's, and wouldn't change a hair on his beautiful head. It's not that I've been upset for six months, but there has been a tiny part of me that at times has felt sad, cheated, envious, or overwhelmed, despite my intense love for my wonderful boy.
Today I am really at peace. Wishing the same for all of you,
p.s. to Anna - pumping for 7 1/2 months!!!!! I am so in awe of you! I only made it for 11 weeks before the pain and exhaustion got too much for me (I had poor flow because of having had breast reduction surgery). Now I get donated milk from the Milk Bank. Aleksander is so lucky to have you as his mama!
An update on Aleksander (if it's okay to post this here) - He's now 10 months old & just had his 3rd surgery Tuesday the 10th of June (almost 2 weeks ago). This surgery went great and he was home the next day! He's been a bit grumpier than usual, but he's stopped waking up in the middle of the night for his Tylenol dose and is back to his usual destructive behavior (even at this moment, there are cheerios all over the office floor).
I'm also still pumping, though at the moment I'm taking fenugreek trying to get my supply up because he keeps eating me out of house & home!
he is severaly disabled.. has very low muscle tone.. blind. hearing impaired, g-tube fed, tracheotomy.. you name it
heres his site & has a link to his story.. its lonnnnnnnnnng though.. so if you got a few hours..lol
By the way Anna that's wonderful you are pumping. I only made it 6 months. My daughter couldn't nurse either do to her heart condition that went undiagnosed til almost 4 months. At first she was being classified as failure to thrive.
Have you ever seen the yahoo group pumpmoms? They have LOTS of great ideas on increasing milk supply.
I'm Leah and I have a 9 month old named Salem with heart problems. Her biggest issue is hypertropic cardiomyopathy where basically the heart muscle just works too hard and thus thickens. She is on a beta blocker and we do routine echos and ekgs to make sure it's still working. She also has pulmonary stenosis, a mytral valve leak and a VSD. The pulmonary stenosis may cause a need for surgery later.
Because of her heart problems and a couple of physical markers she is being screened by a geneticist for Noonan's Syndrome. The geneticist saw her at 6 months and said she had a couple of markers but not a lot and we go back to be re-evaluted at 1 year. Unfortunately they don't have the genes isolated that causes Noonans so it's a purely clinical diagnosis.
ds is 2y.o. dx shortly after birth with renal insufficiency secondary to posterior urthral valves. progressed to end stage renal dieses at 10 months(started dialysis).failed transplant at 24 months(my kidney)and is scheduled for transplant # 2(from a way more than generous friend) on 8/7!
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