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Infants » Newborn Development

Visually Impaired Newborn

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Dear Dr. Susan:

I am a private duty nurse for a 1 year old boy that only weighted 3.12 pounds when he was born. He has congenital anomolies so he has a tracheotomy and a gastrostomy tube for feeding. He seems very alert and playful. He receives physical therapy once a week and his parents and I work with him the other days. He is supposed to wear glasses but it is almost impossible to keep him form pulling them off. He is able to roll over and to sit up by himself. The family concerns right now seem to be on his surviving. His heart did stop twice and he is on an apnea monitor. He seems to be quite stable and I can see the potential in that bright little face. I want to do everything that I can to help him reach his potential whatever that is. Does your program deal only with normal infants” I don’t know about any Head Start programs available but I think he is too young for that right now. He likes colors, movement and sound so we try to get him toys that include those elements. He gets tired very easily and sometimes over-stimulated. I guess what I am asking is, “Is there any more that we can be doing for this little boy to improve this chances of a near normal life?” Thanks for any ideas you can give me.

Thank you for writing. Head Start has infant-toddler programs in some areas called Early Head Start, but if he is medially fragile, it is wise to wait. Our families have multiple handicapped children as well as typically developing little ones. Absolutely, do sensory integration therapies as much as possible, which means arrange toys, spaces, and equipment, play dates and other events which mix and match as many sensory sources of input as possible.

You can make simple toys and games. Try using Christmas lights hidden in paper towel tubes, making obstacle courses playing hide and seek. Reinforce self-feeding and walking activities, including the best – knee walking. Get him into all fours position, dangle toys on strings from couches or chairs so he can reach, grasp, and release. Encourage dumping and pouring water, sand, mud, and fun stuff. He can help mix in a bowl, he can put toys into and out of containers. He can build, construct, etc. He will need help, but he needs to know he is “doing” these tasks, even if he’s not doing this whole thing. He should feel as if he is using reciprocal motions such as up, down, in out, stretch, bend. Create some activity boxes for him with sets of household objects to sort, arrange, bang on, and group things together like pots and pans. He needs to go from place to place and find objects to choose of his own free will.

Contact your local Association for the Blind or Sight enter, or CP Center, and enroll him a day or two a month in an early intervention program. They are the best at sensory integration usually, and have the best range of adaptive materials. They can also advise how to keep those glasses on. Stress high contrast, varying light sources, flashlights, and other on-off intermittent types of light and stress fun and play rather than “work”.

Have the family let me know any concerns they have about survival. I can put them in touch with others who have similar issues. How is his language? What words or sounds for words is he making.

Again, thanks for writing  and keep in touch.

Susan H. Turben, Ph.D.

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