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Amy Goes to College

It has been a long time since I last posted anything on here but not without a good reason….

As of August 17th, 2015 I have been attending the College Experience Program. I thought now

would be a good time to get a story out because one of my high school teachers contacted me

thinking I quit because I have not updated any posts on facebook or on my blog.

I’m still here! It hasn't even been 2 months yet but I have been learning so much about myself andlife. I wish I could say it has been easy and I’m loving it but the truth is….Its hard!

Even though adjusting has been difficult at times, I feel so lucky to be here. For those of you

who don’t know what the program is about, here it is…

The College Experience Program is a program for “young adults” with all different kinds of

disabilities. It is for those of us who would not have the opportunity to do well in a typical

college setting – even with modifications. We are learning what is important for us. The things

that most people take for granted. Life Skills.

For me, the hardest part was to be away from my family. We are close and I had NEVER been

away from home. I was also pretty lazy when I was at home. I let my parents and sisters do

everything for me. Once I got accepted into the program I began my “Community Habilitation”.

I enjoyed my outings and felt great learning how to go to the bank by myself, food shop and try

some basic cooking skills. Let me tell you, doing community – hab and living 2 hours away

without your family are two totally different things.

I was actually fine the first few days. I expected to be homesick but was loving the fact that for

the first time in my entire life I had a lot of friends! Girls to hang out with were hard to come by

in my Special Education classes in high school. All of a sudden I am in a house with 5 other girls

who can relate to me! That has been the most awesome part. All of us have our own issues

but we actually help each other out. No one is judging each other.

So, like I said, I am in a house. The house has 4 apartments. I have one roommate and she is

awesome. We each have our own bedroom and share common areas like the bathroom,

kitchen and living room. Our apartment is always busy with the other girls coming in for this or

that. Having my “own place” felt like I was dreaming. Until I realized that I left my mom at

home and I had to clean it and put food in the fridge. Once the food made its from the food

store to the fridge – by way of a shopping cart – how embarrassing, I had to figure out what to

do with it so I wouldn’t starve! Learning how to cook – for real- is one of the hardest things I

have been doing. I think I am getting better every day though. The first week or so I wasn’t

eating that much and we have to do so much walking here that I actually lost weight! My family

calls it the “reverse freshman 15”.

Back to the program – we take classes that will help us live more independently. We take a

finance class that teaches us about budgeting our money. Before the program my money was

my money to spend. After that was spent I usually just spent my dads. Now I have a certain

amount of money and if there is something I want to buy or an event I want to attend I need to

save up. That can be challenging.

We also take cooking classes. We are learning the very basics. Some of us know more than

others. I am starting from scratch.

Health and hygiene are also on our schedule. We are learning how to eat properly and be

healthy. Along with that we take fitness. I always hated gym in school but this is definitely

better. Right now I take a zumba class.

When I first came into the program we did what they call “boot camp”. We had to learn our

way around the neighborhood and be “tested” before we were allowed to walk anywhere

without staff. I felt so great when I passed that walking test on the first time. We also have

been doing “bus training”. We ride the public bus with staff members to and from the mall.

Our “bus test” is to get to and from the mall by ourselves. Unfortunately, this has not come as

easy to me as the walking test. I have taken that damn test 3 times and failed each time. I have

no problem getting to the mall, it’s the getting back that is messing me up. The first time I

failed was because when I got off the bus another student taking his test got off as well. Staff

members saw us walking together to our meeting spot and decided I had relied on him. I didn’t

even know he was on the bus, how could I have relied on him? The second test I was feeling

super confident. I was determined to pass. Well, my confidence got the best of me and when

we got back to familiar surroundings I was too eager and pulled the thing to make the bus stop.

When I got off I realized I had no idea where I was. I panicked! I was on a busy street, lots of

traffic and construction going on. I knew the plan….call the staff member who was testing you.

I called her and she said she would come and get me. I then proceeded to call my mom. When

she picked up the phone I was hysterical on the other end. I told her I was lost. She knew I was

doing a bus run that day and that I was feeling pretty good about it so how the hell did I get

lost? The way I described the scene: I got off, I realized right away I was not where I was

supposed to be. There was a lot of construction and people were rushing by me. I called the

staff. They took 2 hours to find me. A woman pulled her car up next to me and asked me

directions. Through my sniffles I told her “I don’t know! I’m lost!” The woman cursed at me

and sped away. I will never take the bus test again! The real deal: I got off, I realized right away

I was not where I was supposed to be. There was a lot of construction and people were rushing

by me. I called the staff. They got me in 6 ½ minutes. A woman did ask me directions and call

me a nasty name but other than that I was fine. They made me take the bus test again in a few

days. You think I’m going to say I passed the test, right? Wrong! Failed again….I was definitely

going to pass this time. Because I wanted to be sure not to get lost again, when I got on the bus

from the mall I asked the bus driver if he would let me know when my stop was coming up. He

did and I am happy to report that I got off where I was supposed to. Pass? Nope. Failed again!

This time the staff was on the bus with me and saw me talking to the bus driver. Damn! She

was sneaky – all in disguise – well, really just wearing sunglasses. I wouldn’t have known if my own mother was on that bus. I really have to start paying attention. I swear I didn’t see her. In my opinion, doesn’t asking the bus driver for help count as “life skills’? I mean if I was on a

public bus at home and was unsure of where to go, I would definitely be asking him. The CEP

apparently doesn’t think it does. At this time I am waiting to re-take my bus test. I will keep

you posted.

Living in a city setting rather than in the suburbs has been an adjustement too. I am not used

to hearing people shouting in the street as I lay in bed. Where I live we don’t hear police sirens

that often either. A few weeks ago there was some kind of fire right near our house. That was

pretty scary. I also experienced my first power outage away from home. It was during a heat

wave. We were without power for a couple of days. We all actually left the house and were

put up in a hotel down the road. It was not the accomodations I am used to and I hated sharing

a room with 2 other girls but I survived. I am very proud of myself for pulling through all of

these experiences. There have been a few times that I became so homesick and called home

crying, telling my parents I don’t know if I’m going to make it, but I always keep trying and I am

so happy when I realize that I did make it through whatever was freaking me out at the time.

My mom reminds each time that my worst day at the program is still better than the best day

being lonely and unmotivated at home. She also reminds me that when this program is over I

will be getting a job and that my goal is to live independently. I need to continue going


That’s what I meant when I said this experience is teaching me a lot – especially about myself. I

had to try very hard to even get into this program so it makes it that much more important to

be sure that I stay and finish it until the end. There are days that go so well and I am feeling

very proud. Then there are the days that I feel like I am the dumbest student here. I know I

should not compare myself to others, because that is what staff and family keeps saying, but it

is kind of hard not to. Especially with the bus. The first 2 times that I failed I was devastated. I

told my parents that I didn’t care if I ever tried the test again. It just seems like to much

disappointment to handle each time. I was completely fine with the fact that I would be stuck

within the 2 blocks that I felt comfortable walking in for the next 2 years. I know that is not

realistic and that eventually I will pass. Failing so many times has actually taken the stress and

pressure off of me. It is weird, but when I finally do pass I don’t know how excited I will be.

When I was living home I didn’t like going anywhere alone. Now I am going into stores by

myself and having to decide about what I am buying – for example, I needed a new curling iron

so I went to the drugstore down the road. I wasn’t sure of which one to buy so I had to ask

someone for help. This was a big deal to me. People that know me know that I can be awkward

when I have to talk to someone I don’t know.

For a long time I complained that I wanted to have the same kind of life my sisters had. I looked

at them as “normal” and wanted to be part of a group of friends like they had. I wanted to go

to college. I wanted to be like everyone else; anyone else. I know now that things are not

always what they seem. I never saw the hard work they had to do in school. I never really

understood the unrest that can take place in a group of friends. I didn’t really get what a pain in

the ass it could be to have to really take care of yourself. I mean, I am making my own lunch

before classes in the morning! I have to make sure I have what I need with me for the day. If I

make a mess and then go to bed, its still there in the morning! Yes, I am learning a lot. I just

learned something that will probably be one of the most important lessons…

I had my first lesson in DRAMA. If you’re thinking “oh, that’s nice, they offer theatre at this

school”, that is not what I am talking about. I am talking about the drama that takes place

between people over something silly. I am talking about how you can be great friends with

someone, they tell you one thing but mean another and then get angry with you. I am talking

about the kind of stuff that makes you think: What the hell just happened? I never

experienced any real problems throughout school because there were not many people to have problems with. I was usually the only girl in my class and guys don’t usually go for that kind of stuff. Well, I won’t get into too many details, because not only is it tiring but when I hear

myself saying it out loud its just stupid. Here is a brief description. I met a guy. His ex tells me

to “be careful” with him. I tell him I can’t talk to him. His ex tells me to talk to him if I want. I

want. I want to talk to everybody! I held myself back socially all through school. I made up my

mind that I was going to try to meet as many new people as possible and that I was going to

make a lot of friends. We plan to go for coffee. While we are there his ex shows up. She starts

screaming at him, then at me. He screams at her. The coffee place is crowded. I am

embarrassed. I yell back. Other people got involved. People who I considered my friends. Now

I am pissed at them. I am pissed at everybody for not minding their own business. Things went

from 0 to 60 in a matter of minutes. I realized later that these people had just as much trouble

letting things go as I did. I was so stressed out. Staff wound up getting involved after the fact

and we had a house meeting. The air was cleared but I was mad at myself for getting caught up

in all the craziness. I talked to my family afterwards and they all reminded me that I wanted

what everyone else has – this included drama. Everyone goes through it. I know it could

happen again but this is a “lesson” I do not want to take again.

So, do I like the College Experience Program? Yes!! Even though things can be rough from time

to time I am excited to be part of such a great program. I am having opportunities I wouldn’t

get to have at home. Good or bad these experiences will make me a better person. I want to

continue to spread awareness about genetic disorders and “hidden disabilities” and I want to

continue to grow as a person. Like everything else so far, it will take me longer to reach my

goals but this experience is giving me the push and confidence to keep going everyday. I love

my new life.

Meet Amy 

Hi, my name is Amy. Join me on my adventures as a daughter, sister, friend, student, teenager, and individual with Deletion 22 (DiGeorge Syndrome)

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