update on frankie

I think the doctors know quite a bit... But at the same time I don't agree with doctors or people putting limits on what a child can or cannot accomplish. Provide them with the opportunity, and as with Whatdidyousay's niece, they will never cease to amaze you. Children are little sponges- even children with cognitive issues. They just need to see and experience it consistently, and things will start to set in. He can do it, he just needs the opportunity.

The children I've been surrounded by, (and some with more severe intellectual disabilities) have made some amazing progress. One child who is deaf and also HA's autism over time demonstrated his receptive understanding of signs, and directions. His expressive vocabulary has been improving each year. Another child who is deaf and also had Down syndrome has made great progress, especially in the last two years. She is telling stories, and recounting memories from the day through ASL.
I realize Frankie has some different things going on, but there is more to him than meets the eye. Don't let the doctors limit what he "can do."
 
well, all of my kids underwent a really big learning stage as toddlers, and i think frankie will too. he IS learning, but its very slow. today for instance, he "waved" at me. he wasnt trying to wave or anything but he made his hand wave, if that makes sense. hes learning to do different things with his hands. i also hold him in my lap and we watch music videos on youtube and i clap his hands for him..he still cant clap BUT he will relax his hands so i can do it for him. so there are little things here and there that are good. i really like seeing him enjoy music though..i think that is helping him more than anything.
also, his occupational therapist tried to sell me this "therapeutic brush" for 5 bucks. i get the concept, and i already do it on my own, but the reason it was hilarious was because it was one of those cheap plastic things you get when you have a baby? except it had a fancy name, i cant remember it at the moment though.
 
They used that at my sons old school. It is really helpful for a lot of reasons, including promoting circulation and helping with sensory issues.
 
Have you try infant massage help muscle tone? You use long gentle strokes down extremities and back and stomach. Seems help.
 
of course, and i already do that..but..it was the cheapy free plastic newborn baby hair brush that they give away at the hospital..and they wanted 5 bucks for it! :D
im noticing that if you slap the word therapy before any product, you can expect an automatic markup. i saw some "therapy blocks" which were your every day wooden blocks on sale for 100 bucks!
 
frank loves massage..after his bath i get out his baby magic stuff and give him a good rubdown..he is such a cuddle bug anyways, he just loves it.
 
frankiesmom said:
the one i am trying to get looks like a stroller.. might pay for looks like a wheelchair, which we definitely dont want because he CAN walk, but not very far, and then the whole falling thing.
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from experience dont go special stroller(i still have nightmares about mine)

my dad up till i was 8ish used a really good canvas pack which he cut leg holes in and placed a firm cushion in the bottom

the backpack allowed to hunting,tramping and enjoy "normal for my family" actives
 
oh no..frank is 30 pounds now, and there is no way i could haul him around..im too fat and out of shape!
 
frankiesmom said:
oh no..frank is 30 pounds now, and there is no way i could haul him around..im too fat and out of shape!
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You could get in shape. There are people who carry their eleven year olds on their back and originally thought they were too out of shape to do it.:P
 
oh i could...but i think even if i were, lugging around a heavy kid wouldnt work for me. even more so if he were 11 :D :D
 
frankiesmom said:
oh i could...but i think even if i were, lugging around a heavy kid wouldnt work for me. even more so if he were 11 :D :D
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I agree..I do not think it would work either. I also think lugging him around may set you both up for some head injuries from the Frankie throwing his head.

My daughter used to do that.. out of the blue she would fling. She has busted my nose and lips a couple of times. No... she did not do it out of a fit. She also head banged a lot when she was tired. The doctor told me it was soothing to her.
 
he does it whenever i go to get him out of bed..or whenever. it drives me crazy because you never know when hes going to do it.
he can do it all he wants in this bed though, i am so glad that he has one now!
 
frankiesmom said:
i still show him stuff, and he does seem interested. so its a good sign!
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That is a very good sign as long as long he it not obsess with the item.
I took care of my niece that has aspergers, I was going take her on the
swan boat with my daughter and I brought both girls a balloon before going on
the ride and my niece became so obsess with her balloon I could not interest her in anything else and we where not able to take ride on the swan boat.
My sister has not accepted the fact that her daughter needed help. The doctor said her daughter was just very 'shy' and that was why she did not made any eyes contact with her own parents! My niece also has low muscle tone , she was not able to sit up as a baby, she would fall to one side and , was not able to nurse very good. She can sit up now and her muscle tone has gotten better.
The doctors said she should send a to group home for kids that will never be able care for themselves and live there her whole life!
 
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:D
 
Sawweeet!! That is the most awesome bed, evah!! :)

The kid in it is just as awesome! What a cutie!
 
whatdidyousay! said:
That is a very good sign as long as long he it not obsess with the item.
I took care of my niece that has aspergers, I was going take her on the
swan boat with my daughter and I brought both girls a balloon before going on
the ride and my niece became so obsess with her balloon I could not interest her in anything else and we where not able to take ride on the swan boat.
My sister has not accepted the fact that her daughter needed help. The doctor said her daughter was just very 'shy' and that was why she did not made any eyes contact with her own parents! My niece also has low muscle tone , she was not able to sit up as a baby, she would fall to one side and , was not able to nurse very good. She can sit up now and her muscle tone has gotten better.
The doctors said she should send a to group home for kids that will never be able care for themselves and live there her whole life!
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nope, hes never obsessed over anything and he makes really good eye contact with us, luckily!
 
frankiesmom said:
nope, hes never obsessed over anything and he makes really good eye contact with us, luckily!
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I am sooo Happy to hear that!! I know my niece has a really hard time making eyes contact. She was so worried about going to the airport because of this . She thought TSA would think she was a up to something bad for not being able to look them in the eyes!


Frankie's bed is great! It is huge , he looks very cute in it , he is very cute !!
 
aww that is sad! no, frankie LOVES attention from anyone, and lots of hugs. his bed is pretty large, its a twin size, but with the frame and all..i love the wireless remote it came with, that is really nice!!!
 
frankiesmom said:
aww that is sad! no, frankie LOVES attention from anyone, and lots of hugs. his bed is pretty large, its a twin size, but with the frame and all..i love the wireless remote it came with, that is really nice!!!
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What is the remote for? To raise and lower the guard rails?
 
nope, to raise the head and foot..the top rail you just unclasp and fold down..its really nice and convenient.
 
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