NOTE: The following post was written by Nikki Cochrane, a foster mother living in India. We are publishing her questions here to help connect her with others who may be able to advise her.
My youngest, Brianna, is 22 months old and is blind and weighs only 13 lbs. We are sure she has sensory processing disorder. She won’t take anything by mouth at all other than a bottle, and isn’t gaining weight on formula. The problem is, doctors don’t have any understanding of sensory processing disorder here in India.
Yes, we have taken her to several doctors and ruled everything medical out. It seems that everyone agrees it is sensory processing disorder. However, we have no one here in India who knows how to direct us on making a feeding therapy program. We are doing our best to research what to do.
She has general oral aversions. She screams when we brush her teeth or try giving a massage with an electric toothbrush. She is also hyper-sensitive to other tactile input; she is overcoming touching different things… she used to scream when we would read tactile books, etc. She is still not great with it but is making improvement. She’s really sensitive to sound and cries when there is any loud noise. She likes to be held but isn’t much of a cuddler.
She doesn’t drink as much as we would like so we are trying to increase the amount she takes in to help her gain weight. We have decided against a feeding tube for now, unless her weight begins to drop. Just 2 months ago we started mixing things in her formula, and some things she will spit out and refuse to eat and some things in small quantities mixed with the formula she will take. We tried mixing the regular Indian food (rice, dal, curries, fruits) into a bottle and she won’t drink that. If we pour a little bit of that in with formula she will drink it. If we sit with her for 20 minutes we may be able to get 2-3 small spoonfuls of baby food in her, but it is a fight and she screams and cries and spits it out more often than she swallows it. She is 7kg with a BMI of 12.3 and we can’t get her past the 7kg mark on formula alone with the small amount that she drinks. She IS slowly increasing the amount that she can drink which is good.
Her sensory processing disorder affects her gross motor skills as well. She holds her arms and legs close to her body. We actually thought she might have a mild form of cerebral palsy, but that has been ruled out with an MRI. She does have delayed gross motor skills but is improving. It seems that what we thought was high tone is actually her just hugging her arms and legs close to her body as a result of stress in new situations, when things are loud, etc. When she is in bed at night and is relaxed, she is loose.
Brianna lived in a government orphanage until 17 months old and then came to us. She turns 2 years old next month and has been with us since January. She is blind so it is very likely sensory-related neglect. At the government orphanage she basically laid on the floor or in her crib all day every day. We don’t think there was any trauma but there was certain neglect. She has always taken a bottle of milk fine.
Anyone with more questions for Nikki, or experienced advice to pass along to her, please do so in the comments to this blog post so that other parents can also benefit.
Thank you so much to anyone who can help her!