[blparent] Feel Letter

[Jessica Trask]

Feel Letter
Dear Parents/Guardians,
My name is Jessica Trask. I was asked by Carrie Gilmer the 
formerPresident of The National Organization of Parents of Blind 
Children to write this letter about my experience of being an Adult 
with Albinism.

First I’ll start explaining a little bit about the genetics of 
Albinism. It’s recessive which means both parents have to carry the 
gene for the condition. If you would like to learn more in depth about 
Albinism. go www.albinism.org this is the website for the National 
Organization for Albinism and Hypopigmentation they also have an online 
community that you can join to get support from others with Albinism 
and other parents of Children with Albinism. as well. There are three 
main types of Albinism they are Ocular Albinism, Oculocutaneous 
Albinism. Ocular Albinism as it sounds just affects the eyes. 
Oculocutaneous affects the eyes hair and skin to varying degrees. 
Ocular Albinism is generally X-linked with means the mom or other 
females in the family carry the gene for it. The can be determined by 
seeing an Ophthalmologist who can do an examination of the eyes.

I was born at Hartford Hospital in Hartford Connecticut on December 18, 
1980 to Richard and Joan Trask of East Hartford Connecticut. I have 
three other siblings I have an older sister an older brother and a 
younger sister. I grew up in Connecticut from birth to the age of 
eleven. I was diagnosed with Ocular Albinism or Autosomal Recessive 
Ocular Albinism when I was three or four years old. Which I believe 
through some research that I did earlier in 2008 that I either have 
Oculocutaneous Albinism type 1B or type 2. I haven’t had my feelings 
confirmed about it.

I started receiving services from a vision specialist from birth. They 
would come into the environment where I was at and do what needed to be 
done to help my parents and older siblings deal with having a child or 
sibling with a visual impairment. At the age of three I transitioned 
into the public school system in East Hartford and services continued 
through a Teacher of the Visually Impaired. I went to four or five 
different elementary schools from Kindergarten through fifth grade 
which was when my parents got divorced. Mainstreaming was not really a 
big thing yet when I was in elementary school. I never attended my 
neighborhood elementary school which was the one the my two older 
siblings and younger sister attended note my younger sister only 
attended the neighborhood elementary school from Kindergarten through 
third grade. more details to come on that in a little while. I was 
placed in special education at the time which mostly consisted of 
students who had behavioral problems. The whole time I was in 
elementary school I was only mainstreamed into Art and Music.

My parents divorce was finalized in early July of 1992 then a week or 
two after it was My mom younger sister and me moved out to Park City 
Utah with my mom’s boyfriend at the time. This was the best thing my 
mom could have done because at the time I would have been either 
transitioning to a middle school the year after that anyways. We lived 
in Utah for a total of ten years five of which was spent in Park City. 
I attended middle school and my first two years of high school in Park 
City My younger sister was only in the fourth grade when we moved out 
to Utah. I was fully mainstreamed when I attended the middle school in 
Park City from sixth through eighth grade. Which was a positive 
experience. I worked with five different Teachers of the Visually 
Impaired while I was attending school in Park City because of the 
nature of the position which at the time was only a part time one I 
believe it still is. My first two years of high school weren’t a 
totally positive experience because their idea of a good placement for 
me was to put me in a self-contained classroom with the most severely 
disabled students they had in the school. That pretty much went against 
what I was doing at the middle school. The basic thing was they didn’t 
think I would ever go to college so they had me working toward getting 
employment after I graduated. Between my seventh and eighth grade year 
at the middle school the outreach director of the School for the Blind 
had started a summer camp at the school for the blind so the students 
could receive instruction in the expanded core curriculum for the blind 
and visually impaired which wouldn’t happen very much during the normal 
school year because of course the time restrictions that the Teachers 
of the Visually Impaired have with the students. The Expanded Core 
curriculum includes Braille, Adapted Daily Living Skills, Orientation 
and Mobility, Assistive Technology and Adaptive Physical Education. I 
attended the camp the whole time I was attending school in Park City. 
We moved down to West Valley City just right before I started my Junior 
year of high school and moved in with my mom’s then fiancée at the 
time. I attended Hunter Senior High School for my Junior and Senior 
years of high school where once again I was fully mainstreamed into 
general education classes.

Then, after I graduated from high school I transitioned once again into 
the Rehab system. I’ve dealt with Vocational Rehabilitation Services in 
four different states. I started receiving Vocational Rehabilitation 
Services in Utah through the Division of Services of the Blind and 
Visually impaired. Then, in 2002 with my mom I relocated to Vermont 
where for six months we were living in Warren Vermont above a garage in 
an apartment above my grandfather and step-grandmother’s property. I 
was receiving services from the Vermont Division for The Blind and 
Visually Impaired. Then here in New York State I’m dealing with The New 
York State Commission for the Blind and Visually Handicapped .  I 
started receiving services in Utah in 1999 that went until August 2002. 
Then I received services in Vermont from September of 2002 to July of 
2004. Then from August of 2004 to currently I’m receiving services from 
the Commission for the Blind and Visually Handicapped. In both Vermont 
and New York I lived in two different cities when receiving services 
from their respective Rehab agencies for the blind and visually 
impaired. Now Living in New Hampshire with my new fiancee of almost two 
years. We live in Claremont New Hampshire.  I'm now dealing with the 
services for the blind in New Hampshire.
We had a little girl in mid October. We had her taken out of our 
custody by DCYFS in New Hampshire because they didn't think we could 
take care of her basic needs. We my sister-in-law husband and all of 
our friends we've told believe that they are using my disability 
against me.  If  there are any blind parents dealing or whom have dealt 
with DCYFS in New Hampshire please contact me by email my address will 
be on the bottom of the letter.

If you have any questions please feel free to email me at the following 
email address ashleejessandmark2012 at samobile.net

P.S
For those on the Blind Parents List you might recognize this letter 
from 2008 when it was published in the NOPBC news letter. By the 
President at the time Carrie Gilmer,