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Posted: Wed Nov 30, 2005 5:42 pm
biggrin Reposting this from the pregnancy subforum: I thought some of you could help her out or have some info on it. heart p r i n c e s s Has anyone else here had a baby with a choroid plexus cyst? It's a cyst on the part of the brain that makes brain and spinal fluid, and is a warning sign for Trisomy 18. Luckily, my baby's hands, feet, and heart all look good, but we're going back for a followup ultrasound in week 28, just to be sure that the baby isn't very sick.
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Posted: Wed Nov 30, 2005 8:15 pm
part of the top of one side of my baby's chromosome 8 is missing. It's caused 2 hles in her heart and she may have some learning dissanilities and developmental delays. She will probably have to have surgery on her heart between 6 and 12 months of age.
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Posted: Mon Dec 19, 2005 6:48 am
hey everyone just popped in to say hi! and give a quick update. Eric is ..ok ..he hasbeen kinda sickbut it seems to be clearing now and he is making awesome progress with his aba. sorry i havent been around a whole lot but life has been crazy! i just found out im pregnant and trying to figure out how when and where we are getting married and then eric ontop of it all @_@ i should be around alot more now. how is everyone? Rabid-Llama-- sorry to hear about that ..my cousins daughter had the same thing but the holes closed themselves by the time she was 5 months old so ya never know. Ihope everything turns out ok.
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Posted: Mon Dec 19, 2005 8:12 am
Hello.. i dont have a "special condition" child.. but i can only imagine what you guys are going through! I wish you all the best! You are ALL in my prayers!! heart biggrin
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Posted: Thu Jan 26, 2006 7:20 am
Wow...I haven't been able to post on here in a long time but here's a small update...My son, William (3), got into that special school I mentioned earlier.,...It's basically a special education preschool/kindergarten...so he's been going since November and the changes so far are great...he's starting to talk a little more, not much but anything is better than nothing at all...he's becoming more social being around all the other children there...he's already got his entire alphabet learned, can count to 13, and is starting to piece together words such as "no" "hi" "yes" "go"...basic stuff but to me it's a very big step with him...we've also started seeing a woman from an organization here that comes to your home and tries to help the whole family with ways we can interract and activities that might help him get caught up more so age wise...through assessment from the school, basically everything but his motor skills is at about the level of an 18-24 month old....his motor skills are great though...so for now, until we can get insurance to be able to see a specialist and get a diagnosis, he's said to have developmental delays...we're pretty sure it's autism to some degree (the teachers, the woman who comes to our home, AND the woman who cuts his hair ((she also has a special needs child)) also share this suspicion) but you know...without a diagnosis it's just speculation at this point...
Well, I hope everyone had a great holiday season and that everyone is doing well now...*hugs* to everyone!!!
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Posted: Fri Feb 03, 2006 10:27 am
Though my son is not special needs I work with developementally and emotionally disturb adults... In fact, there is a lady who lives in my home who is the victim of "shaken baby syndrom" which not only paralyzed her from the waist down but aslo stopped her mental developement at the age of 18 months... I have also taken care of a few cereval palsy and car accident victims!!!
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Posted: Fri Feb 03, 2006 3:22 pm
My younger half-brother is special needs. He might have FAS. He has severe speech delay. He also has ADD which makes things difficult for him when you think about the other disabilities.I love him very much. My mother also teaches kindergarten and for the past 7 years she's had an autistic child in her class. When I get out of high school I want to go to college to be a special needs teacher, hopefully elementry school. To make a living while i'm in college I plan on being a special needs ad. I believe not alot of people can teach children with disabilities. I think the all have potential. They just need a little extra love.
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Posted: Thu Feb 09, 2006 5:47 pm
onlyateardropaway - you said you wanted to be a special education teacher. do you have a particular area of interest?
I've had another difficult year with trying to get accommodations for my kids at the public school. Things are looking up, though. I'm also in the process of learning about becoming a parent support person.
The laws for special education can seem rather confusing. Has anyone had any trouble getting school accommodations in place?
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Posted: Sat Feb 11, 2006 7:15 pm
onlyateardropaway My younger half-brother is special needs. He might have FAS. He has severe speech delay. He also has ADD which makes things difficult for him when you think about the other disabilities.I love him very much. My mother also teaches kindergarten and for the past 7 years she's had an autistic child in her class. When I get out of high school I want to go to college to be a special needs teacher, hopefully elementry school. To make a living while i'm in college I plan on being a special needs ad. I believe not alot of people can teach children with disabilities. I think the all have potential. They just need a little extra love. Come to michigan! come to my school district! *playfully begs and pleads* Ok guys. I come with an update of sorts. Last time I updated... the school passed naaman's autism certification since i have issues with the neurologists office. (namely i still owe her some money. rolleyes Apparently my son getting help isn't as important to them as me having my balance to zero..) Well.... I got his progress reports on paper a week ago, and we just had parent teacher conferences this week. ! It went so great. He seems to be doing especially well for his speech therapist this year. She must really like him. Maybe he found a good connection with her since he seems to do well with people he feels secure with ya know. Anyways, she says he met his yearly objective of doing those things at least 50 % of the time.. so now she is going to work on him meeting those same goals at more than 50%.. she thinks maybe 75-100% .. 100% might be expecting a little much but hey.. we still got half a school year left. OT didn't seem overly satisfied with progress, but she says he is making progess in a way to meet her hopes by end of the year. His main room teacher gave him some high marks. Not as great as speech, but at the conference, she has said that he has really made a lot of progress in teh past few months. I guess there is a little boy who sits with him and talks to him. I want to make friends with his mom and have playdates. I suspect he could be good for naaman to play with outside of school. 3nodding Also, she said the school had an autistic consultant come out to their class room a few weeks ago,a dn she had put out some visual cue cards. She set the room up. Then, she came back this past week, and soon as they started their new program with the cards; his teacher says he knew where they all were already. And, his main teacher didn't even know the lady had put them out even.. but naaman knew.. and remembered EXACTLY where they were. She said that was the best day they've ever had. He went to each activity and stayed for his time. She said she'd set a timer.. and he wasn't allowed to get up till the timer went off. She also said the consultant is seeing about getting him some kind of weighted vest for his aux classes. Well, i guess she had brought one, but it was too big. Also, she is looking into some new technology for the same kind of therapy but instead of it being weighted.. it is like a snuggled jacket.. just soemthing that lightly hugs most of his body. Still haven't gotten anywhere with potty training... gonk gonk Omg.. potty trainign is teh bain of his childhood for me. If there is ever one thing that feels like it's almost insurmountable it's that... i mean.. even his speech delay isn't so hard for me. it's this potty training business. I tried pulling out some cloth udnerwear for him. then i had josh come in the bathroom while naaman was on teh potty. i had josh show naaman his underwear. I point to it and says underwear! then i grab a pull up adn hold it next to dad's underwear. I say "are these the same? nope.. not the same". then i got the underwear and hold it.. "these ARE the same! don't you want to have the same as your dad?" xd of course, he didn't seem very interested... I"ll just keep trying it... keep reintroducing it to him. i know it will be a hard adjustmetn even if he learns to use the toilet as it will break his routine..
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Posted: Sun Jul 09, 2006 10:00 pm
This year I finally managed to get a neuropsych evaluation done for my son. Turns out that he really has an anxiety disorder. I suspected this for a long while but having the neuropsychologist's report is really quite detailed. (Before we thought he had ADHD with ODD, Sensory Integration Dysfunction and possible mood disorder.) The neuropsych report ruled out the ODD. One less set of letters in the alphabet soup of labels. If you can manage it, I'd definately recommend a neuropsychological evaluation to pinpoint where the trouble is stemming from. 3nodding NLD on the Web - an Introduction to Neuropsychological Assessment
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Posted: Sun Jul 09, 2006 10:14 pm
Graceangel Come to michigan! come to my school district! *playfully begs and pleads* Have you ever heard of bridges4kids out of Michigan? There are a lot of Michigan-specific resources and information on that site. My son just started OT again for the first time since he was three. He still has sensory issues but I can't do the same things with him that I could when he was little.
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Posted: Mon Jul 24, 2006 3:15 am
Fletchen, I agree with you, a neuropsych evaluation is a wonderful thing. My husband had one a few months ago in the midst of his recovery from brain surgery, and we'd like to continue having them through the years, so that he can see written proof of all the gains he's making and has made, even if he doesn't recognize them in everyday life.
Unfortunately, we went thorugh the "alphabet soup" game with our thirteen year old when we were trying to get a diagnosis. I wish we'd been able to get a neuropsych eval for her, but our insurance was so nitpicky that we had our developmental ped dropped from the list... *sighs*
She had many of the same issues that it seems you're describing with your child. We collected many diagnoses that were just pieces of the whole (she had sensory issues, speech delays, developmental delays, tics, ADHD behavior, auditory processing disorder, etc). She landed somewhere on the autistic spectrum, and since then, we haven't thought much about her being a child with a diagnosis, she's just who she is (and she's a fantastic, almost frighteningly intelligent kiddo).
How old is your son?
Anyway, I hope things are going well for you and your son, and that the neuropsych helped give you guys some direction on where to go from here.
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Posted: Tue Nov 07, 2006 11:15 am
Hello everyone!
I have a 19 month old son with moderate cerebral palsy. He was born at 28 weeks due to me having a placental infection that led to a placental infection.
Talk about a guilt trip I have been going through! I don't smoke or drink and I took extra care of myself, so I've been left asking why and how did I get this infection. Some health care providers say it may be due to the extremely vascular uterine polyps I had during the first trimester and other say that wouldn't cause the infection.
The 2 days leading up to my son's birth were crazy. I went to the hospital 2 times saying there was something wrong and my doctor kept sending me home. question The third time I went in, I was dialated and gave birth very quickly.
My son was then airlifted to Loyola Med Center and stayed there for 7 and half weeks. He had a grade III hemorrhage and has bilateral PVL which are cysts that show where the brain damage occured. PVL usually indicates cerebral palsy.
Connor is improving all the time and we hope he will be walking by the time he is ready for preschool. We finally received his stander from the state (it took Illinois 8 months to send it!) and now we are waiting on his braces, walker and bath chair. He is getting OT, PT and DT twice a week each and speech therapy once a week - although speech is a very strong point for him.
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Posted: Fri Nov 10, 2006 8:19 pm
I worked with the mentally/physically handicapped (adults) for 10 years. I also have a step son who has aspergers(sp?). He is 13. My hat is off to all you wonderful parents!!!!
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Posted: Tue Nov 14, 2006 5:04 pm
I know I posted it elsewehre.. but, one big step we've made is that naaman will now wash his hands by himself. Bathtime is half and half now. He will willingly go in.. and prefers to sit on a stool.. you know like they do in animes? Well, he likes that... except for the hairwashing. Still no potty training... but, I was talking to a customer in my store. i told her about naaman. She said her nephew is ASD and had the exact same problem.. adn his parents were totally undone as to how to get past it. It ended up the grandma took the son for the day.. to her house and made him sit on the pot for like... 8 hours until he went both pee and poop on the pot. And, she said she would bring him food, drink, and stuff to do while sitting there. But, he couldn't get up unless someone else had to use it. and even then, he couldn't have a pull up or nothing on him adn would have to hold it. I am thinking I might try it next week when he is on thanksgiving break. sweatdrop
His speech is really coming along. The language and reciprocal language is still an issue.. but meh. They didn't build the great wall of china in a year.. so, i am still looking up.
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