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 Posted: Tue Jun 12, 2007 10:06 pm
*rubs temples* So we had an appt with the ped today. She took close and evaluative look at him. She then looked at me and said " Time to get evaluted and registered with EI" We knew it was comming but it felt like a load of bricks dropped on me. His trunk and legs are kinda weak. His right arm and leg are more so afftected and have "spastic episodes". That's why when he crawls he falls on his face. He drage tha arm and leg rather than actually using them properly. Because the muscle is so much weaker it "spasms" after useage. It's hard to watch him. She also warned that his other tendencies amy lead to a later diagnosis of a ""spectrum""disorde AKA autism ect. We won't really know 100% about his hearing for a while. We do know he isn't hearing whispering ect. You have to speak loudly to get his attention, he always has fluid behind his ears ect which we are told aren't good signs. There is also concern over his vision. He was born with "cloudy" eyes which has some what slowly disipated but not completly. So we need to go to see an optomatrist which i'm petrified to do. He has a hard time picking things up and frequently misses. He usually just kinda gets into the general area and feels around. He is also having a really difficult time with depth perception. I'm at a loss here. I now know for sure that i will not have anymore kids which is devestating. I am a genetic carrier and more than likely all my children will have these "flaws" . How do you take all that in. Your a good mom but please refrain from having kids because they will all be "special needs". Today was just too long i'm off to relax and get some sleep. It's one am and my day starts at promptly 715am or Eric and Al can't function. How i long for life without such a strict routine! gonk
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Posted: Tue Jun 12, 2007 10:07 pm
Angelique~Yuna I hope that everyone is doing well. We are doing good here. Ben is still not walking yet, but I know he's close. As for self feeding, we are getting there. Some days are of course better then others. Sometimes, he likes me to feed him and refuses to hold the spoon and scoop his food. xd I am still getting his white blood cells checked everything month because the levels are not normal, but they lately they've been getting better. He recently had a thyroid test done, and everything came back fine on that. I won't be on much during the summer. My husband and I are leaving this afternoon to visit families in Montana for a week. Then we will be moving to Des Moines, IA for the summer because my husband has a job working for the iowa attny general. I have no idea if we will get internet access over the summer or not. I will be back here when we return in Aug so I can have my baby here at home. Ben also starts school at the end of Aug, so life will be intresting. I wish you all the best of luck and you all will be in my thoughts and prayers. Thanks for all the support out there. I appreciate it. I will come on and let everyone know when I'm back, so please don't kick me out of the guild. I will return in August, sooner if I have internet access over teh summer. heart We're missing you! Try and keep us updated as much as you can hun and i hope everything goes well!
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Posted: Tue Jun 12, 2007 10:10 pm
Prokopy Yes thankyou, they are both doing good as are my other children. Sergey had his first kiss the other day with his girlfriend. He was very proud of it and phoned to tell me straight away. i have not seen him so happy in many years. I was very proud. Vlad is also doing well, He now always knows who he is talking to which is good as he has lots of brothers and sisters to remember. He knows his name in braille ( i thnk that is right i had to translate that). and we are learning him to swim now which is good fun. Oh thats so cute! You should be proud. Seems like he's turned out to be a really good guy. OOOh i love when kids learn to swim. It's so cute and good bonding time. Alec is scared of more than about 4 inches of water but we're trying! I'm so happy that you all are doing well. Keep up the good work. I wish you all happiness.
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Posted: Fri Jun 15, 2007 7:17 am
Um Hi. i only just noticed this thread biggrin
Anyways, My little brother, whom i look after full time, has severs Autism and physical handicaps He is in a wheelchair. His name is Phoenix and he is nearly 8. He is the most amazing paino player ever and when he is playing tis liek the only time he is ever happy. In september he is going to a special boarding school which knwo how to deal with him because i jsut can not look after him now becasue he is so big. but he is still going to be coming home at weekends and holidays, if he wants to.
well i dont really know what else to say. so bye
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Posted: Fri Jun 15, 2007 7:26 am
Quote: Oh thats so cute! You should be proud. Seems like he's turned out to be a really good guy. OOOh i love when kids learn to swim. It's so cute and good bonding time. Alec is scared of more than about 4 inches of water but we're trying! I'm so happy that you all are doing well. Keep up the good work. I wish you all happiness. Yes i an very proud of Sergey. It has taken me many a year to convince him that girls do not smell. I like to teach my children to swim. it always has been my job. My young daughter Kseniya is also very scared of water, we do not know why, it is hard for us to make her even have bathtime. And thankyou, i wish happiness to you and your family also.
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Posted: Sat Jun 23, 2007 4:54 pm
Just popping in with an introductory post. I'm kris, or Princess on Gaia if you prefer. I just joined the guild. smile
My daughter's name is Kalyea, and she's an autistic. She's 15 now and considered 'high functioning', and getting good grades in regular age appropriate content with a few modifications. She was diagnosed as medium-severe when she was 3; it's been a long, hard fight to get her where she is today.
Of course, though she's pulling out of the woods and seems to be developing well and will probably be able to function in society on her own someday, she's also smart enough to know she is different and she's starting to question why kids don't want to be friends with her, and why boys never like her. That in itself is heartbreaking.
Looking forward to getting to know the members in here. While I'm usually busy on Gaia and may not always be very active in here, I'll pop in when I can.
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Posted: Tue Dec 11, 2007 4:44 pm
I can imagine what for a fight you must have had over the past 15 years PiercedPrincess.
My oldest son was diagnosed with Asperger Syndrome (a form of autism) when he was 11, I always knew he was different then other children his age, but for me Mike was just Mike and I never thought much of it until his head mistress at school accused me of abusing him because of the way he behaved.
She ask me if I would agree to have him checked out and if needed diagnosed at the hospital.
So for 6 weeks I had to take Mike to the hospital each and every day, after that time we got the diagnoses and that's where all the "fun" started.
High School was a complete nightmare for Mike, he was singled out of everything, from lessons to school trips (which they never took him on, because he was too much work ...my a**...)
He is 18 now and at collage to study ICT, he's doing pretty well and also managed to find a girlfriend there.
He got engaged to her on her 18st birthday (she was 18 a day before Mike turned 1 cool
Mike still worries me in certain things, because he is so different and goes of the hook for the tiniest thing, which makes him an easy target for bullies.
Also, his personal hygiene is almost none existent.
His logic when it comes to having a shower or even just to put some deodorant on, never ceases to amaze me.
I told him a few days ago to at least put some deodorant on before he was off to collage, he told me he didn't see the point in doing that, because once he reached collage on his bike he would just be sweaty and smelly once more...it can be a real nightmare to get him to have a wash....
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Posted: Thu Jan 03, 2008 9:45 am
My 18 year old daughter has a rare form of spina bifida - when she was born there were 8 reported cases of her type in the world of which she was one. We have been really lucky as she doesn't have hydrocephalus which is very prevalent in SB kids. She walked at 18 months and can ride a 3 wheel bike despite what the doctors always said. They also said she would never dance but I have over 40 dance trophies in my living room. when she was 11 she had surgery for dislocated hips and has been in a wheelchair ever since - she is now 18 and a senior. She drives a regular car (no hand controls) and has a lift to load her chair and then uses a walker to get to the drivers seat. She is already taking college courses in computer science and has a part time job as well as being in the extra curricular music programs offered by her high school.
Lots of bumps along the way but she is a beautiful accomplished young lady and I am very proud of her.
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Posted: Mon Jan 07, 2008 1:09 am
angelbaskets I'm so glad your daughter managed to archive all that.
I think sometimes when a doctor says things like 'she/he will never be able to walk' it's a motivation for that person to do it, just to prove them wrong.
Not saying that is why, just saying it's a possibility, I know it would be a motivation for myself.
I know my partner, after he had his accident was told he could never walk again, but he did and I'm glad he did.
Right, got to go on my morning mission now and try to get my oldest out of bed.
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Posted: Mon Nov 03, 2008 10:05 pm
UPDATES!
Eric- Is doing really good and was moved to a regular school. He is in a special ed class with only 5 other kids. He also still has his aid. Thanks to a new cocktail he is doing very well and starting to sight read!!!! He also is making really good eye contact and his listening has dramatically improved. He's having some eye issues so he might need glasses and they think he is dyslexic (he got that from me). OH and he lost 2 teeth with another one on its way out! All in all he is doing awesome and was very excited to be Ben 10 for halloween!
Alec- Had yet another surgery. That makes 5 now along with countless procedures. He goes this week for shots to try and fix his immune system. We now know he is allergic to sunlight. Found out on the 4th of july xd He needs a repeat surgery to perm. fix the tube going from his eye to his nose(maybe). He was just put on some meds (melatonin) to help with the sleeping issues (4 hours broken up over a whole day is not enough! It was like an hour at night then 2 hours in the mid morning then 2 or 3 20 min power naps sporadically) Tonight was dose one and he's finally asleep!!!! He was formally diagnosed with autism and some sort of defiance thing. So as soon as he's 3 we will be working on placement. Still not sure what's up with his motor planning and skills. He still has that ""Baby"" walk and falls alot. The hole in his heart closed and he is down to only one med for his reflux. He also is down to one med for his allergies and only 1 inhaler. He still wont eat so we are doing a special type of almost formula to keep him growing which is something else he is finally doing. Now we have to watch him though because he is having problems regulating his blood sugar. Gotta keep oj and cookies on us at all times or he gets lethargic and falls asleep. Apparently thats bad lol. Al was Eyore for halloween but he couldnt take all the people and noise so he ended up chillin in the car most of the night.
So updates people it feels like its been forever!
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Posted: Mon Nov 03, 2008 10:07 pm
PiercedPrincess Just popping in with an introductory post. I'm kris, or Princess on Gaia if you prefer. I just joined the guild. smile My daughter's name is Kalyea, and she's an autistic. She's 15 now and considered 'high functioning', and getting good grades in regular age appropriate content with a few modifications. She was diagnosed as medium-severe when she was 3; it's been a long, hard fight to get her where she is today. Of course, though she's pulling out of the woods and seems to be developing well and will probably be able to function in society on her own someday, she's also smart enough to know she is different and she's starting to question why kids don't want to be friends with her, and why boys never like her. That in itself is heartbreaking. Looking forward to getting to know the members in here. While I'm usually busy on Gaia and may not always be very active in here, I'll pop in when I can. Welcome. I think it's awesome how much both you and her have achieved! Eric has started to notice he is different and classifies kids as "like me" or "not like me". IT's aweful when they try to engage and get blown off.
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Posted: Sat Nov 15, 2008 6:45 pm
To be entirely truthful I've had little to no experience with special needs individuals. I want to say though, that I have so much respect for those of you who parent special needs children especially. You are amazing people, and so are your kids.
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