:: PRISMS

Nico

by Jean Weil, Nico's mother

Nico in a chair My husband and I met while I was living and teaching English in Mexico. We moved to Kentucky because I wanted to live and raise our family there. Nicklas was born in July 2007.

We thankfully began signing with Nico from birth, not knowing how important it would be. It was also important to us that Nico ("Nick" in Spanish) would be bilingual. We were really surprised when he was officially diagnosed with hearing loss at three months. We started with his hearing aids when he was nine months old.

Because he had unexplainable hearing loss, low muscle tone from head to toe, and chubby hands and feet, we were sent for genetic testing. On September 25, 2008, the geneticist called me at work and told me that he has SMS. He was fourteen months old.

With the new diagnoses, he was referred to different therapists and doctors. He started services with First Steps Early Intervention in Louisville. He had PT, OT, ST, and a deaf-oral teacher.

Nico was diagnosed in May 2009 with an allergy to casein (milk protein). After we eliminated that from his diet, he improved a lot. His behavior was better. And he no longer had a continuous runny nose. He just seemed to feel so much better.

Now, one year after the diagnoses of SMS, Nico is 26 months. He signs over 100 words and on occasion uses multiple words in appropriate sequence. He knows his alphabet. He grinds his teeth all of the time. He is very aggressive almost exclusively to me. He bites and slaps, but I think it is because he has trouble calming down. His mood swings are extreme. Little changes trigger meltdowns. He especially does not adjust well to new people entering the room or making eye contact. However, he is active, happy, and affectionate. He walks and runs. He goes to a regular day care. He does great around other children. He wears orthodics that go in his tennis shoes. Hearing aids cause him to get ear infections. He has been on many rounds of antibiotics. His hearing loss is minimal, so we are leaving the aids out at this time to keep his ears healthy and avoid more antibiotics.

I am honored to be Nico's mother. I couldn't survive a day without him. I love him with all of my heart. No matter what the future brings, I am blessed to be the one to spend it with an angel, my Nicklas.





Family Support Contact Another SMS Parent Meet Some Special People Join the SMS Listserv Poems and Articles	Nico by Jean Weil, Nico's mother My husband and I met while I was living and teaching English in Mexico. We moved to Kentucky because I wanted to live and raise our family there. Nicklas was born in July 2007. We thankfully began signing with Nico from birth, not knowing how important it would be. It was also important to us that Nico ("Nick" in Spanish) would be bilingual. We were really surprised when he was officially diagnosed with hearing loss at three months. We started with his hearing aids when he was nine months old. Because he had unexplainable hearing loss, low muscle tone from head to toe, and chubby hands and feet, we were sent for genetic testing. On September 25, 2008, the geneticist called me at work and told me that he has SMS. He was fourteen months old. With the new diagnoses, he was referred to different therapists and doctors. He started services with First Steps Early Intervention in Louisville. He had PT, OT, ST, and a deaf-oral teacher. Nico was diagnosed in May 2009 with an allergy to casein (milk protein). After we eliminated that from his diet, he improved a lot. His behavior was better. And he no longer had a continuous runny nose. He just seemed to feel so much better. Now, one year after the diagnoses of SMS, Nico is 26 months. He signs over 100 words and on occasion uses multiple words in appropriate sequence. He knows his alphabet. He grinds his teeth all of the time. He is very aggressive almost exclusively to me. He bites and slaps, but I think it is because he has trouble calming down. His mood swings are extreme. Little changes trigger meltdowns. He especially does not adjust well to new people entering the room or making eye contact. However, he is active, happy, and affectionate. He walks and runs. He goes to a regular day care. He does great around other children. He wears orthodics that go in his tennis shoes. Hearing aids cause him to get ear infections. He has been on many rounds of antibiotics. His hearing loss is minimal, so we are leaving the aids out at this time to keep his ears healthy and avoid more antibiotics. I am honored to be Nico's mother. I couldn't survive a day without him. I love him with all of my heart. No matter what the future brings, I am blessed to be the one to spend it with an angel, my Nicklas.
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