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  1. #1
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    Smile New Here

    Hi, my name is Anne. I have a son, Justin, who will be 4 in October and a daughter, Alexa, who is 16 months. I'm not sure if I belong over here, but I thought I'd give it a try! Alexa has sensory issues. It started at 8 weeks old when she stopped nursing and wouldn't take a bottle. They put her in the children's hospital. She eventually (after 20 hours) got hungry enough to take a bottle so they let us go home. We began working with a speech pathologist. Her weight went from the 90% to the 25% over the next several months. I noticed that she never mouthed toys and found this odd. They did a bunch of tests for GI stuff but couldn't figure stuff out. Rather than subjecting her to more invasive tests, I asked if she could begin OT. Upon doing this we learned she had oral defensive stuff going on as well as sensory stuff with her hands. This explained why she would do a hybrid crawel, wouldn't pull herself up, or cruise. Once in OT all that changed and within months she was running around As time went on it was observed that she had low muscle tone and didn't seem to know where her body was in space. It's been overwhelming, but very educational. She started OT at 9 months, works with a feeding specialist, and just started speech therapy as well. To outsiders, they don't realize something is unique about her (she presents very well). Feeding has been the biggest stressor and it usually falls upon me. I guess I just feel overwhelmed that she's only 16 months old and involved in so much therapy. More importantley I know how blessed we are for such early intervention. Thanks for reading (if you made it this far)

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    Posting Addict wishing4agirl's Avatar
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    Welcome to our group. I would definitely say you belong over here. I have 2 special needs kiddos. One has massive heart issues (he's the one I talk about most), but my other is mildly autistic and it was his sensory issues/oral aversions that that actually we discovered the autism. I can attest that the food issues are BY FAR the hardest for me to deal with. The lining up of the cars, the OCD stuff, the defensiveness to change I can deal with, but he food issues nearly killed me. He's come a LONG way. He's 6 now and although yes he still has the issues, his eating is way better (take that with a grain of salt). So I do know there is hope. Again welcome to our group and don't be a stranger.

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    Welcome! I'm Tanya and I have 2 little girls, Alana and Madison. This board is excellent for support so I hope you'll stick around!

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    Thanks for the welcome! It's nice to find some people who have an understanding of what it's like to struggle. Yes Angela, feeding issues are the hardest thing we deal with! I can handle the low muscle tone stuff, sensory stuff in the hands, but the feeding makes me want to pull my hair out. Most of the feeding falls on me and my husband doesn't get how much it stresses me out. I have friends with babies around the same age. It's all good until feeding time hits and then they get that she's not just "a picky eater". When we first noticed that she was struggling and I was calling around for help, everyone said autism. Then they would meet her and say that wasn't the case with her. 8 months later they still say they don't believe she has autism, just the sensory issues. Only time will tell, I guess they don't feel that she exhibits any other symptoms. I'm sorry about your son's heart issues. That would be so stressful.

    Thank you for the welcome Tanya! I plan on staying around!

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    I have a friend who's son has lots of sensory issues (he's sensory-seeking so he'd ram his head into her and stuff). He's quite bright, has no signs of autism or anything, just lots of sensory issues.

    The Highly Sensitive Child deals with lots of sensory things - like kids who can't stand the way socks fit (my son is borderline on that - sometimes he just cries when we put shoes on). Maybe it'd have some ideas that could help you. The idea with that book is to help the kids learn to survive in a world made of people that aren't really quite the same as them - people who don't understand that bright lights and loud noises are more than just annoying, but are actually painful to people who are highly sensitive.

    Either way, good luck with everything and I'm glad you found us! My son is the same age as yours - he'll be 4 in October He's the reason I'm on here. He was born with a cleft lip.
    Natalie & Dan - June 2, 2001
    Samma - Nov. 5, 2004
    Tommy - Oct. 19, 2007




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    Mega Poster betsy0040's Avatar
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    Welcome! My son has some sensory issues, most especially with his hands, he doesn't like certain textures. Thankfully he doesn't have eating issues, although he isn't feeding himself with a spoon or fork yet and with his hand sensitivity he won't pick up certain foods to eat but mostly just squishy type foods (some fruits) so we do dried fruit instead.
    Elizabeth & Jamie - 7/17/2004
    Joshua - 11/23/2008, breastfed for 17 months!



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    Posting Addict kerina313's Avatar
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    Welcome to our little/big group. I'm a Mom to three special kids. My first is a VATER/VACTREL -- heart, kidney & spine. She's 5 and a pistol. My second was a T-18 girl, who gave us 2 days and then died due to her issues. My third is now 16 months and has no corpus collasum in the brain. (bundle of nerves that communicates). She a few months ago finally started EI and is now rolling all over and pushing herself up. She has low muscle tone and they just diagnosed her with "Congenital Estrophia" (lazy eyes) -- she's due for surgery for that next week.

    I'm also Mom to a 16-month old toddler boy -- who is twin to my ACC girl. So far no real issues with him.

    I hope you get some more answers to what it might actually be. Did they ever suggest getting an MRI done to see if there's something causing the sensory issue?
    Erin & Stephen 4/10/04
    Emily 5/16/06
    Sarah 5/22/09-5/24/09
    William Graham & Samantha Lynne 4/29/10
    4/1997, 9/2003, 6/2007, 1/2008
    -----------------------------------

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    Posting Addict wishing4agirl's Avatar
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    Quote Originally Posted by LoveJandA View Post
    Thanks for the welcome! It's nice to find some people who have an understanding of what it's like to struggle. Yes Angela, feeding issues are the hardest thing we deal with! I can handle the low muscle tone stuff, sensory stuff in the hands, but the feeding makes me want to pull my hair out. Most of the feeding falls on me and my husband doesn't get how much it stresses me out. I have friends with babies around the same age. It's all good until feeding time hits and then they get that she's not just "a picky eater". When we first noticed that she was struggling and I was calling around for help, everyone said autism. Then they would meet her and say that wasn't the case with her. 8 months later they still say they don't believe she has autism, just the sensory issues. Only time will tell, I guess they don't feel that she exhibits any other symptoms. I'm sorry about your son's heart issues. That would be so stressful.
    I was taught that you can have sensory issues and not be autistic, but if they have autism they will most likely have sensory issues. So it could be the case, but only time will tell. NO ONE thought my son was autistic either including the pediatrician. After she got the report (I brought her in a copy) she immediately went to her office to read it. She was floored because I had been correct the entire time that something was not right. And when it came to feeding no one believed me until they tried to get him to eat something that was hard, dry and crunchy (i.e. cereal, chips, pretzels, crackers, popcorn). Then when he started to gag and get sick they suddenly understood or when he would run from the table screaming as if the table was killing him they finally got it. Before that they just thought I was imagining it or over reacting. I would just sit back and smile at those moments and say "do you believe me now". And yeah the other stuff is slightly strange sometimes, but the food issue makes me go nutty. I mean I'm suppose to provide basic things for my children, but when one of those basic things I'm providing I can't get my child to touch it gets me every time.

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    Thanks for the responses!

    Natalie, I will look into that book. It sounds like it would have a lot of valuable information. I can't believe our sons are going on 4. It feels just like yesterday I was having him!

    Besty, Alexa just started holding a spoon (doesn't really eat with it though unless I guide her hand). She'll pick up most things but won't attempt to eat them. I wonder how she'd do with dry fruit. She's not much of a chewer.

    Kerina, I'm sorry to hear about the loss of your little girl. One of the women in my district has a son that was born without a corpus collasum. We've talked a lot about EI and what's been helpful for her son. That's great that your little girl has made so much progress. Good luck with her surgery.

    Angela, I could have posted the same stuff on the feeding issues word for word. Everyone thought I was overreacting, my MIL thought what I was discussing (sensory issues) didn't exist. Even when I had her go to OT and the feeding specialist started working with Alexa they felt it wasn't necessary. She presents very well, and then they started working with her and understood my concerns. I remember trying to explain to my husband when Alexa was 2-months old why it upset me so much that she wouldn't nurse or take a bottle. He didn't get that I felt that's what I was designed to do, nourish my child and she wanted no part of it.

  10. #10
    Posting Addict wishing4agirl's Avatar
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    Quote Originally Posted by LoveJandA View Post
    Angela, I could have posted the same stuff on the feeding issues word for word. Everyone thought I was overreacting, my MIL thought what I was discussing (sensory issues) didn't exist. Even when I had her go to OT and the feeding specialist started working with Alexa they felt it wasn't necessary. She presents very well, and then they started working with her and understood my concerns. I remember trying to explain to my husband when Alexa was 2-months old why it upset me so much that she wouldn't nurse or take a bottle. He didn't get that I felt that's what I was designed to do, nourish my child and she wanted no part of it.
    With Dakota everyone looked at his size. He was very normal size for the most part. At one point he went from the 50% to the 5% in less than a month. That is when they started doing GI tests. But I learned how to pack a mass amount of calories into a small amount of food and learned to doctor up the few foods he did eat so they had more calories. (Pretzels have a mass amount of calories when you soak them in an entire bottle of butter flavored oil.) Anyway, when most of the other therapist and doctors had us watch his feeding they had us bring in foods he liked. I NEVER understood that. What was that going to help? It wasn't until we started a "feeding group" that the therapists finally saw. They chose the foods which I LOVED and of course Dakota hated, but it helped the true Dakota come out. They realized he had MUCH more going on than met the eye. It was those therapists that realized he had MANY symptoms of autism. It is very frustrating. Even now people don't really get Dakota, but that is okay. He is amazing.

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