The Magical Life You Hadn’t Planned

Mr. and Mrs. C I have the results of your son’s vision exam. As we suspected he has albinism. Have you heard of that before?

Is that when someone is an albino? 

Yes, but that term isn’t really used anymore. Listen, I have a lot of information to share with you. First, I need you to know that people with albinism are usually legally blind too. That means that their vision is often around 20/200. I know this is a lot to take in and I want to give you some time to process this information but before I leave I need to reassure you that your son will live a “normal” life. In fact, people with albinism often have extraordinary gifts intellectually, musically, and socially.

Can you talk with us now? 

Of course I can. Let me get you a notebook and a pen so you can write things down as we go. Listen this can be very emotionally draining and it is a lot to take in so please let me know if you would like to take a break at any time. First I need to reiterate, albinism will
not keep your son from living a very healthy and productive life. This condition is not nearly limiting as it was years ago.

10553410_914747395206650_4125320828942472483_nNow, about his skin, the idea that people with albinism can not go out into the sun is a
ctually quite far-fetched. However, it is true that they have no pigment in their hair,
skin, or eyes so when he is outside he will need sunblock, a hat and sunglasses. As he gets older his tolerance will increase and he will be able to decide when he needs the sunglasses. Most of the families I work with who have a child with albinism use neutrogena 80-100 strength. I suggest you consult with your pediatrician and/or pediatric dermatologist.

As for his vision, you will want to have him followed by a pediatric opthamologist. I have listed the doctors in our area that take your insurance. You will also want to contact early intervention and the commission for the blind. I have included their contact information in this packet. They will provide services for your son until he turns three and then the school district will take over.

I have also included information about sensory processing disorder, because his vision is low his other senses may be heightened. It is something that can improve and dissipate as he grows older if treated by the proper therapists. I believe he will benefit from OT, occupational Therapy, when he gets older. I have listed the therapists in the area that accept your insurance.

I think that is more than enough for now. I have a folder for you, I have included a lot of information for you to go over when you are ready. There is information about N.O.A.H. (The National Organization of Albinism and Hypopigmentation) , a list of other families of children with albinism in the area, blogs and websites that you may find supportive and informative and specialists, therapies and interventions that should prove helpful.

One last thing before I go, I shared the name and phone number of a parent of two sons with albinism. You can learn more about their journey on her blog; She has an entire page dedicated to All Things Albinism.  I highly recommend you visit it when you are ready. Her boys are 8 and 6 now, she begs me to tell families that they have been to Aruba, Mexico, Disney World, and they play outside in the family pool all summer. Her boys have never been sunburned.  She will be a wonderful resource for you. She also insists I tell you that both boys are avid readers, play soccer, basketball, and run track. If it is ok with you I will share your information with her as well. She asked that I share the poem Welcome to Holland with you. I placed a copy of the poem in your folder as well.

Please don’t hesitate to have me paged if you think of anything you’d like to discuss. 10452318_1100869616594426_6449798891871463669_n

Published by tarsha benevento

I am an educator who thrives on helping others. I spent close to 15 years teaching and then as an administrator in the New York City Public School System. During that time I completed my first Masters Degree in Teaching Reading and and additional degree in administration. I currently tutor students in all subjects and grades. In addition, after completing the Parent Advocacy Class with The Federation of Children with Special Needs several years ago, I am a parent advocate. I plan to dedicate my time to helping other families of children with special needs.

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