Living With 7q11.23 Duplication Syndrome
The last few years have been difficult, but as I learn more about the duplication I think back to the way I was taught in school. Learning that my children and I are affected with the duplication it has really impacted our family. We have to learn how to manage all our special needs and accommodate so we all understand each other. As I was growing up I didn’t know I had 7q. I just knew I was in Special Education from Kindergarten to 12th grade because of my learning difficulties. I see many similarities with my kids. I definitely had anxiety growing up. Thankfully I had wonderful parents and teacher who assisted me. I do recall having a routine which helped me learn how to manage my time better.
I didn’t speak until I was three years old and I was very lazy. My parents blamed it on my sister who was very motherly and would do everything for me. However as I entered Elementary School, I was definitely delayed. I had speech difficulties and learning difficulties. I was placed in the Resource Room in 1st grade. I didn’t mind being sent to another classroom. For me it was excitement as I got to leave class and go to a room where it was fun. What I didn’t realize I was actually learning, but in a different way. I recall myself being silly and hyper when I couldn’t do something. In fact, I still am. Mikey on the other hand shuts down when he cannot do work, and Gabi, which is hardly ever, as she is very intelligent, tends to get frustrated. I guess that is where she is a lot like me and wants everything to be perfect. (Both children have the duplication.)
In Middle School it was pretty much the same, but I was more aware of being sent to the “Retard Room”. I apologize for that term, but the kids who didn’t go to special classes called it that. It embarrassed me but I knew I had to go to make my parents proud of me. I remember getting angry and refused to do my assignments, but I knew I had to complete the work if I wanted to go back to the regular class. I worked hard, and got use to going especially because I learned that my best friend also had learning difficulties and we both knew we were not going to give up. We even made an agreement that when we grew up we were going to be Nursery School Teachers, which we are today.
As I got into High School this is where it became tougher. I knew this was the year when grades mattered and it reflected to where you could go to college. Math was my most difficult subject. I had to pass the High School Proficiency test and it took me forever. When I was a Senior I was in a Freshman Math class. It didn’t bother me much because I knew I was one of the oldest and these students looked up to me, but I did feel awkward as other students my age were taking higher math classes, and here I was taking “easy math”.
In 12th grade I asked my parents if I could be taken out of Resource Room. We had a Team Meeting, and we all agreed to a Study Hall and a Tutor for Math and Reading afterschool.
I worked my butt off knowing that I had to prove to my parents I could do it so I could go to College. After I graduated from High School Graduation I went off to American University in Washington, DC. My S.A.T. scores were low, but because I had some strings attached, the school (my dad, brother, and sister all went there) had me enroll as a Non-Degree Student. The Learning Services Coordinator requested for me to attend classes at The Lab School of Washington to get as much needed assistance as I took college classes so I could become a Degree Student the next semester. I was overwhelmed that I would have to be working my butt off. It meant I was not going to get “the college experience”, but I learned how to manage my time. There were plenty of times I would goof off when I could not do the work, but I was able to come back into reality and prove to my family that I could remain in college.
It was a great experience going to The Lab School. I got to meet many friends who were taking classes to pass their G.E.D. They actually looked up to me and were impressed I was in college already. We all helped each other and made sure everyone did well to succeed and get into college as well. There was one friend in particular who has become my best friend. We both have been there for each other, and today his wife and I are best friends as well. She is very supportive, and our kids are so close that they have become great friends as well.
In all honesty I was glad I had the extra assistance. It was just what I needed in order to succeed. As I got older I knew my brain didn’t work like other people my age. I had to organize my time. And, being the perfectionist I was, was very helpful It might have taken me almost six years, but I graduated from college with a 3.4 GPA. I even got special recognition as having a learning disability and not giving up even when my College Writing Professor told me I shouldn’t be in college. She would tell me my writing was unorganized and written as if I was in Middle School. It hurt as I worked so hard on assignments from the day it was assigned. I am really proud of myself as I have become independent. All my hard work paid off. I even stayed down in the DC area and got a job as Childcare Teacher. I lived in Maryland for almost ten years until I moved back to NJ to start a family with my husband. It shocked me as I didn’t think I had it in me that I would ever find someone to date.
Growing up with a learning disability or the duplication disorder has been rough. I am still learning how to manage my time, and now that I have two kids with it, I have to manage our time based on our needs. We do have a routine, but it can become stressful when something doesn’t go our way. My children are so much like me when I was growing up, despite the aggressive behavior that Mikey has. At time we are faced with issues and I tend to get frustrated or anxious. I have to remember I need to stop and slow down as my brain gets so overwhelmed too, and I tend to worry what others think when my kids are out of control when I know it is not their fault. It is just the way his brain is functioning.
I am learning something every day. I know for a fact that routine is very important for us and we need to stick to it to succeed in getting what we want. It is extremely tough, but if we are consistent our lives will be much calmer and we wouldn’t have to feel so anxious. I am thankful I found this group. The support we can give each other is what we need to help us get through the difficult days. If I am overwhelmed I will come to the group and ask for suggestions or advice, and from there I can get my thoughts together to help me deal with the challenging issue. I know for one thing I am not giving up on my children. I will get them the assistance they need to help them with whatever they are have trouble with. I know you as parents are also not giving up on your children and your children shouldn’t give up on themselves. You can do it and grow up to be whatever you want.
~ Kathi