Report for Nathan’s IEP meeting

I wrote this report for Nathan’s IEP folder and thought I’d share it here.

Parent Impressions

Nathan D. Andrew is a miracle. He has a severe and rare brain malformation. His chances of survival past birth were 3%, and past 1 year old, 3%. Additionally, we were told that if he survived, he would be a vegetable and have no cognitive or physical functions.

Instead, Nathan is a healthy, happy 3 year old that is typical in his emotional, cognitive, and social development. He is the happiest little boy that most people have ever met.

In many ways he is just like any other little boy. He likes playing with cars and listening to music. His favorite activities are swimming and reading books. He LOVES to turn the pages of books. He enjoys playing musical instruments. He thrives when other children are around and throws back his head with laughter at the antics of little kids – at their movements, sounds, and how they play. He manipulates mom and dad when he doesn’t want to do things and knows exactly how to best manipulate each parent separately. He has a group of 5 friends who know and love him, and cousins that understand he is different and enjoys playing with him in different ways. He loves having things in his mouth and can often be found sucking his thumb.

He communicates with eye gaze and by making different sounds. When he wakes up in the morning, he babbles and screeches, without crying, when he is ready to be picked up from bed. If he is watching TV on the couch and his TV show finishes, he screeches so we can hear him from anywhere in the house and change the channel. If he is hungry or thirsty and sees someone eating or drinking, he looks at the food or drink and then starts kicking or smiling and looking at us so we know what he wants. We ask him if he’s hungry or thirsty and if he smiles or screeches we know he is, if he looks away or his expression doesn’t change, we know he is not. If he is full or doesn’t want to eat any more, he closes his lips and/or turns his head away. When he is happy he glows and he wears and expression of thorough contentment. When he is tired or cranky or not feeling well, he gets whiney and lets us know, one way or another.

The main way in that he is different from other children is in his gross, fine, and oral motor skills. He suffers from severe quadriplegic cerebral palsy. He experiences fluctuating muscle tone, so his trunk and neck are hypotonic, and his extremities are hypertonic. He is not constantly hypertonic – he gets tight with function. If he wants to reach out, his arms get tight and draw inwards towards his body. If he tries to step, his legs get tight and he scissors when trying to walk. He has difficulty holding his head up and has minimal weight bearing capacity and very minimal balance. He is currently not mobile.

Despite these limitations, Nathan is a very active and curious little boy. He understands everything about the world around him. He anticipates activities. He recognizes places and people – even those he doesn’t often see. He doesn’t always cooperate in physical therapy but is learning that hard work is just a part of life. He is intelligent and has learned many things that were never expected of him, such as body parts, colors, and actions.

He is a delightful, constantly happy little boy that teaches others about joy, strength and perseverance.

Nathan communicates with eye gaze. He will look at what he wants. He is learning to hold his gaze longer and to look back at his communication partner to signify his choice. He has different sounds to express different wants and needs. A screech means he needs attention and that he is happy. Babbling means he is happy and wants to talk. MO means more and Elmo and mom. Looking away or making pouty face or not responding to a question means he is not interested. Usually you can tell by looking in his eyes what he needs. Anyone that is perceptive can tell his needs by analyzing his sounds, movements, and by listening to their intuition – he has a way of putting his needs in people’s minds.

Physical Development

Nathan is now able to bear weight on his legs for 5 seconds to 5 minutes at a time. He can squat to stand with balance support. He can hold his head from falling backwards when leaning back. He can lift his head up when in supine. He can roll from prone to supine. He can hold his head up when in prone if properly stimulated. In the pool, we can hold him almost horizontally and he will hold his head up for extended periods of time. He can sit up and hold his trunk for a few seconds at a time, when he wants to. He is learning how to balance and has improved considerably in the last couple of months. He can prop and side sit for a few minutes at a time. He is able to take steps when given max assist, but has severe scissoring. His head control is improving; he is able to hold it up when excited, but if he is tired or disinterested, he has little head control. He is not mobile and is not able to crawl or roll to get around.

Fine motor development

Nathan is now able to hold objects and to move his right hand towards desired objects. He is very good at grabbing daddy’s face and pulling mommy’s hair. He is able to turn pages in books with assistance. He can shake a rattle and other musical instruments and can play the piano. He has difficulty opening his hands when an object is placed in front of him, but with enough time and desire, he can get his hand to it and sometimes open it to grab the object. He has trouble letting go of objects when asked. He keeps his hands fisted most of the time. He can hold on to a tuning fork and move it to strike another tuning fork wherever it is placed. He enjoys coloring and painting and using his hands creatively. He can hit a switch placed in front of him consistently. His right hand is much stronger than his left hand. When in side or prop sitting, he can support himself with one hand while playing with the other hand.

Cognitive development

Nathan understands everything about the world around him. He knows who his family is. He understands many words and is understanding more words every day. He knows things like places (park, mall, store, best buy, etc) friends (he knows who Presley, Dylan, Gabriel and others); he knows when we offer to let him watch TV. He gets upset as soon as we park outside of the doctor’s office and screeches the moment we turn into his grandma’s complex. He understands cause and effect and object permanence. His favorite game lately is to go look for hidden treasures in the pool filter – he reaches in and pulls out objects that we hide there. He gets angry as soon as he sees the hart walker and the word MEDEK throws him into fits of anger. He identifies pictures with animals, things that go, and other objects. He is a captive audience when I read to him in Spanish and can now listen happily to stories that are about 10 pages and mostly words, no pictures. He is able to make choices using eye gaze and, if properly positioned, using his hands. He is working on matching pictures to objects and other more complex skills.

Social Skills

Nathan LOVES being around other children. Having other kids around sends him into a state of instant bliss. It is rare not to hear him laughing or to see him smiling when other children are around. He enjoys watching other kids play and wants to join into their play activities. At the park, he leans towards the swings and slides and wants to go where other kids are go, which he indicates by eye gaze and sounds. He loves playing in the sandbox with other children and engaging in circle time and singing with others. He tries to stand up and hold himself standing when other kids are around. Also, his head and trunk control improve considerably when surrounded by other children. He has not learned how to take turns and has not learned how to communicate and play directly with other children. If they hand him a toy he cannot grab it, and does not have any way of interacting directly with other kids other than to laugh and/or smile at them.


Nathan is generally a happy, easy-going child. If he is healthy, well-fed, well watered, and entertained, he is happy and smiley. However, Nathan is quite spoiled. Because of all of the medical issues that he faced in early life, he was cuddled a lot and held most of the time. He was not forced to do anything against his will. As he grew older he came to expect this so it is now quite difficult to get him to do things he doesn’t want to do. For example, he strongly dislikes being on his belly on the floor. If placed on his belly he will instantly start whining. If he is not picked up within a short period of time, he will start crying. He will not stop crying until his desire to be picked up is met – even if it takes 2 hours. Because of his physical limitations, he has never been disciplined. He is quite manipulative and skilled at getting his way. His inability to communicate often leads him to quick frustration which leads him to whining or crying. If he is doing activities that he likes, he is very happy and easy going. But if asked to follow instructions or do something he doesn’t to do, he resists strongly.


Nathan is a child with endless potential. His brain has showed amazing capacity for growth, plasticity and regeneration. His occipital cortex is missing, yet he can see. His brain is severely malformed, yet he is able to understand so much of the world and is gaining conscious control over his body.

This potential has to be harnessed by continued stimulation and intense repetitions. Frequency, intensity, and duration are key words when working with Nathan. He needs to repeat something hundreds of times to learn it, but if given enough time and repetitions, he will learn it.

We believe Nathan can gain many more skills if given a chance. As his parents, we are strongly committed to giving Nathan the best quality of life possible. If he can learn, we can stimulate. We do not accept any limitations placed on him by his diagnosis or by the Western medical framework.

We believe that Nathan is a very special child who is in this world to teach many lessons…lessons about courage, love, acceptance, and self-improvement. This is a child who has defied endless and immeasurable odds, and will continue to do so throughout his life.

We beg you to help him so he may continue to progress and develop. Thank you.

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