Sensory Delay Frustration

Britni - posted on 11/08/2013 ( 1 mom has responded )

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Hello All. My name is Britni. I am the Mother of a beautiful 5 year old little girl named Aysia, a 3 year old little boy named Jase and my 1 year old step-daughter Trinity. I had Aysia 7 weeks early. About a week after giving birth, the NICU nurses called me and said something was terribly wrong and I needed to rush over as soon as possible. My baby was sick. What mom wants that phone call? They already had EMT's at their location ready to transport her to the children's hospital in Macon, Georgia. Aysia ended up having a Necrotizing Entercolitis. 25% of her small intestines had to be removed and her valve we need for absorption. After three months in the NICU and four surgeries, I thought once I got her home that the storm was over. I am in the military and not just in the military but I am a military police officer. I had my daughter in daycare briefly, but with my work schedule it ended up being easier to move my sister down with me and have her provide childcare. When i deployed, the kids were kept home the whole six months I was overseas as well. So when I returned home and the doctor mentioned social delays I assumed it was due to Aysia not really being around other kids. Out of nowhere I am receiving calls from a nurse stating that Aysia needs to see an Occupational Therapist. Before her first visit she began daycare (which oh boy isn't cheap!) and immediately I began to notice a BIG difference, but it has been almost a year now that we have been seeing this therapist, and I have mixed feelings. The therapist believes that with a lot of Aysia's gut being gone that is the cause of her delays. When we are visiting her however I don't know how half of the activities she does with her are supposed to help. So I am reaching out to Moms and Dads who have children who have seen OT's to find out what I need to be looking for. What kinds of activities work and don't work? Aysia can be very stubborn and her OT has also mentioned that she probably needs anger management. I have been reading posts and am very happy to know that I am not alone in the frustration. Being in the military it is easy to become so adapted to the military way of thinking. I have to remind myself that she isn't a co-worker or someone i supervise. She is my daughter, and frustration wont get me far. It would just help to get advice from others in my shoes versus the person doing the evaluating.

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Frances - posted on 01/22/2015

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This is all new to Many of us. I font Think that the Sensory Processing Disorder has any thing to do with her intestines. My 3 year old is going through the same thing. He had his first visit with the Occupational and Speech Therapist this week. He is still in the evaluation process. But I noticed things about 8 months ago that led me to believe he had some Sensory Issues. He was in Scottish Rite Hospital in Atlanta the 1st of January this year. The Neurologist there picked up on the SPD And Being behind in his Vocabulary. I'll pay attention to Raylans Therapy sessions and help you any way I can. I hope your Daughter is doing well. Frances

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