# Anyone here with special needs family members/friends?



## StargirlCupcakes (Jan 25, 2014)

I'm new here so not sure if I can post about this stuff but from browsing through this forum I think it's ok? I'm a mommy of a wonderful little 4 year old boy who happens to have autism. It's been a long struggle (but totally worth it!) the past few years as he's getting bigger and learning new things, and new ways to make messes and end up hurting himself. Lately we've especially been struggling with food choices, interacting with other children, and BEDTIME. Ohhh bedtime. I've learned of special needs beds for kids like him. The one I'd love to get him is basically a twin size crib with really high rails so he can't, for lack of a better term, escape in the night! Sadly insurance won't cover it for us so it's more of a dream. Anyway, I was wondering if there were any other fatties or FA's on here with special needs kids (or family members, friends, etc.) and if so what are the things you struggle with? Any FRIENDLY advice and tips is always nice, too! Thanks for reading.


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## CastingPearls (Jan 27, 2014)

I have a nephew-in-law with medication resistant autism. He's in his late teens and doing well. His mother has been through so much and loving and taking care of him has changed her life for the good. He's a good sweet young man.

There are quite a few people here who have special needs people in their lives. I hope they chime in. You're not alone.


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## HottiMegan (Jan 27, 2014)

I have two kids. One that was born with multiple physical difficulties and the other that his doctor said that he most likely has aspergers but doesn't want to make the diagnosis official so he isn't pigeonholed until it's needed. It has been more of a struggle with this little guy (he's five) than it has been for his brother, who has endured 20 surgeries in his 10 years of life. 
Our biggest struggle is keeping the tantrums at bay. You could look at him funny or laugh at a joke wrong and it throws him into a tizzy. Some days are better than others. My whole family recognizes his behavior as an aspy since my 15 year old nephew has it. I'm not a routine kinda person and it's important to have the routine for Alex. Despite being on eggshells often, he's a fun person to be around. He's very attached to me. God forbid another person addresses him that's outside the family. He slumps down and tries to make himself as small as possible, as if to disappear and get away from some person trying to talk to him. (He's a very beautiful kid, so he gets attention from strangers) And OMG potty training was a 2 year long nightmare!! He refused to use the toilet until about 2 weeks before he turned 5. He still wets the bed at night though. (I have a friend who has 3 autistic kids and she said one of her kids didn't train until 7 years old)

On your bed issue, are there organizations around to help with special needs kids? In my area there's an organization called Far Northern that helps with autistic kids and special needs kids. They were a godsend when my oldest was a tot. They cut him off at 3 because his issues were physical and not mental. They also did some evaluations on Alex but they only saw him a couple times because i listened to the pediatrician and waited too long to get help for him. (i wanted to get therapies for him at like 1 1/2 but the ped said he didn't need it) This organization helped pay for tips to specialists and found special equipment for my oldest. They also advocated with insurance. Do you have some Autistic helping organizations? They might be able to help fund a bed. I wish you luck with that. Alex was an escape artist, but we don't need to restrict him anymore.

Sorry for the long winded response. I hope it makes sense


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## penguin (Jan 28, 2014)

My nephew is 9 this year and has Asperger's. He's lived in another state since he was four or so, so I haven't been around too much for the daily stuff in a while. He's a Houdini, and had figured out locks and keys before he was 2, so they have to keep the house locked up tight or he runs off to explore. Often naked, as he's not a fan of clothes. Bedtimes have long been an issue for him, with him staying up far too late and having trouble getting to sleep. He's only become verbal in the last two or so years, and is able to read and write now, which is great.

I can only go by what my sister has done and gone through, but trying to get a bedtime routine that works for him isn't easy. He would often watch a movie to fall asleep to while cuddling one of his special toys. He loves sea creatures, so it's usually one of them.


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## Saoirse (Jan 29, 2014)

One of my brothers is mentally retarded. I dont know what the official diagnosis is, but i believe it had something to do with lack of oxygen at birth from the umbilical cord wrapped tightly around his neck. He is my father's son from his first marriage and he lives with his mother. 

He is an amazing guy. He's always had a job, did well in school and gets to travel, play sports and hes in a drama club! He's has always lived with his mother and he always will, but shes so awesome with him and makes sure he does a lot. 

Growing up, he was always the funny guy, an absolute ham. The neighbor kids all loved him and he would always join us on adventure on our bikes or tromping through the woods.

Since visitation rights ended when he turned 18, I dont see him as much as I used to. Its a sensitive topic with my dad. He loves his son so very much, but they divorced when my brother was young and it took a loooong time for my dad, his ex and my mom to all get along. I always thought he was missing out on life with his father, but my the way his mind works... he's not missing out on much. He has a great life where he is.


I work with a man that has some form of autism, Asperger's I think. He's a little awkward in social situations and he can get overwhelmed very easily. but man, is he awesome! Funny, sweet and a true friend. I love seeing him at work!!


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## Tad (Jan 30, 2014)

My son has had a few diagnosis over the years, but more or less Aspergers is what it all comes down to. Which is notably different from Autism*, so I don't know how much of this applies, but for what it is worth....

We found, especially when he was young, that logical consequences were by far the most effective way of reaching him. On the other hand you should or you shouldnt was next to useless. It was easier for us because our son is hyper verbal, so we could explain these things with a fair chance that the message would get through. Figuring out what the logical consequence should be is not always easy, and yes at times this provoked a tantrum as he didnt like the consequences. So for example, if instead of going to sleep he was out of his crib and playing with a favorite car, hed be returned to bed and the car removed from his room, with the explanation that since having it there was keeping him from sleeping when he should, it wouldnt be in his room at night. That sort of thing might not guarantee hed go to sleep, but hed at least learn to stay quiet so that other toys wouldnt get taken away, and in being quiet he wasnt self-stimulating so much, so the odds of going to sleep were higher (we were also lucky in that he was a good sleeper over all, he just hated the transition from being awake to going to sleep).

Also, while he didnt actually have a lock on his door, there were a lot of evenings where Id loudly walk away from his room, then creep back and hold his door knob tight. When hed get out of bed and try to leave his room the knob wouldnt turn, hed be satisfied that it was locked and he couldnt get out, and hed go back to bed.

One of his issues, and I dont know how typical this is for autism spectrum, might just be him, is inability to effectively screen out stimuli. Even as a baby, if he was handed around too much he wouldnt settle down. In elementary school he complained that it was hard to concentrate because he could hear all the pencils scratching against the paper. Going into a shopping mall for him is probably about equivalent to going into a night club for most people. So finding what was comfortable for him in terms of clothes helped (anything restrictive or scratchy, in the least, was right out). Allowing lots of quiet time, really working to avoid having to take him into stores (or minimizing the trip), when he was smaller if we were at a restaurant, as soon as wed agreed on his order one of us would take him for a walk outside until the food came, etc, etc, etc. Just think what it would feel like if you couldnt screen out every conversation around you, if every smell hit you like it was fresh and stayed with you, if you really noticed every person walking by, etc.

He was horrible at self-monitoring (still not great, but learned some as hes gotten older). So we could tell from the way he was dancing around that he had to go the washroom, but if you asked him hed say he didnt. He didnt realize when he was tired or frustrated or overwhelmed, even though the signs were clear to see in his expression or behavior. He felt emotions, but wasnt particularly aware of them. So he really needed external feedback and guidance You need to go use the toilet You look like you are hot, you should take off your socks/have a drink of water I know that you are mad that the kitty wont let you pet her, but that isnt a reason to throw your toysnot everyone will do what you want. Here is your stuffed animal, why dont you give it a hug? Again, verbal worked well with him, and Im not sure if that is the case with autism.

* There has been brain scanning work done recently that has found characteristic differences in the interconnections between brain regions in the brains of people diagnosed with autism vs neural-typical brains. In a follow-on study they found that the brains of people with an Aspergers diagnosis was mostly very much like those of people with Autism, except that they were hyper-connected in one specific wayit appears that these people develop an analytic focus that lets them partially compensate for some of their other challenges.


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## HottiMegan (Jan 31, 2014)

Tad said:


> One of his issues, and I dont know how typical this is for autism spectrum, might just be him, is inability to effectively screen out stimuli. Even as a baby, if he was handed around too much he wouldnt settle down. In elementary school he complained that it was hard to concentrate because he could hear all the pencils scratching against the paper. Going into a shopping mall for him is probably about equivalent to going into a night club for most people. So finding what was comfortable for him in terms of clothes helped (anything restrictive or scratchy, in the least, was right out). Allowing lots of quiet time, really working to avoid having to take him into stores (or minimizing the trip), when he was smaller if we were at a restaurant, as soon as wed agreed on his order one of us would take him for a walk outside until the food came, etc, etc, etc. Just think what it would feel like if you couldnt screen out every conversation around you, if every smell hit you like it was fresh and stayed with you, if you really noticed every person walking by, etc.



I totally forgot about stimuli for Alex! He needs regular intervals of being totally alone and not bothered. He is currently hidden off in his room to decompress of a day at kindergarten. In preschool, they had a special place for him to go so he could get away from the noise. Alex also, i believe, has some sort of auditory processing sensitivity. As a baby/toddler he would shake like a leaf and cry his head off at loud noises. Now he screams/cries and covers his ears while running away if there is a loud noise. Cant stand it when i vacuum. LOATHES it when i blow dry my hair. I have to warn him that I'm going to do these things to he can seek refuge. I can't even listen to music very loud because of his issues.


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## devinprater (May 14, 2014)

Well, I'm blind. Does that count?


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## bayone (May 18, 2014)

Yep. Works for me.

(That was just going to be "yep." What do you mean, messages have to be at least ten characters? Brevity=Wit, dude.)


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## devinprater (May 28, 2014)

Well, the technical term for it is retinopathy of prematurity. It can have minimal effects, but I just so happened to get the wrong end of the stick. But its better, I suppose, than not being alive, which was the other option, LOL


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## Russell Williams (Aug 2, 2014)

.My beloved autistic daughter faithfully studies the news on the Internet. Since she cannot read she has been using Windows, a Google search engine, and DragonDictate so that she can find articles of interest which are then, by DragonDictate, reads the information out loud to her.

Unfortunately she is not very discriminating about what pop-up program she downloads and so cleaning crud out of her computer is a constant problem. A friend of mine took Windows out of her computer and installed a form of Lennix. I am now desperately trying to find a screen to speech program that will work with Lennix. Apparently DragonDictate will not work with Lennix. I have attempted to use Gespeaker with her Kumbutu but, so far, have had no success. Any suggestions would be appreciated


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