Our Disability Story · Uncategorized

In the Beginning Part 1

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Wow, where to being? Should I start talking about how my Princess was born 18 years ago, to two very shocked parents? We had no idea she had Down Syndrome before she was born. After two perfectly healthy boys, we were not prepared to cope with a baby with a heart defect and developmental delays.

Or should I start talking about the dreams I began to have for her as she grew; dreams of a happy, rich life surrounded by people who love and cherish her? Dreams of boyfriends and prom dances, jobs and travelling?

Maybe I should just jump in and talk about how she is 18 years old this month. She is a twelfth grader and in four months she will be moving away from home. Gulp. My dreams for her are coming true. She will graduate in a couple of months and on July 1, 2011, she will pack up her belongings and move in with a supportive roommate. Who also happens to be her step-cousin – is that even a proper relational title???

How we got here was – as most parents will relate to – at the speed of sound, on the back of a turtle. Throughout her years in school, we have always insisted that she be included in the regular classroom, with a modified curriculum. We were able to hold onto that until high school. In this high school, they refer to the classroom being included in the building as inclusive. The upside is she still takes her options with the regular school population.

Throughout high school, she has had her share of teenage angst. The main, and really only cause of this angst has been boys. Sigh. To think that when she was a baby I thought she would never experience love. As I look back, I realize that was such a silly notion. She describes her feelings by saying, “when I sleep, I dream about him and I hear love songs in my head.” What woman couldn’t relate? Of course, this also means she has had her share of heartbreak – “why is he DOING this to me!!!” was her lament when she was unceremoniously dumped.

With all the boyfriend drama going on around the house, it is amazing I even had time to think about what was going to happen when she turned 18. But, ever the pragmatic, I started the process months before her birthday.

I applied for AISH (Assured Income for the Severely Handicapped) as well as PDD (Persons with Developmental Disabilities) in 2010. I also started the process of obtaining guardianship and trusteeship over her affairs. What a process!!!!

I found PDD very easy to work with but AISH was a gong-show. Disorganized and frustrating. I applied, they lost the application. I re-applied, they did a screening and then said we had to supply more information. I supplied the information. They said we had to come in to sign the final papers. We battled a snowstorm to make the appointment. While we were there, they said that no, we weren’t signing papers, this was an interview (???).  During this “interview” they asked how long she had had her congenital heart defect. Unbelievable. When I called back a few weeks later, I was told a mistake had been made and we shouldn’t have been called into the office – we could now make an appointment to go in and sign the papers. Yikes!

When we went in to sign the papers, they couldn’t tell me what health benefits were covered by AISH, they had no documentation to give me or anything. The worker said she would just need to supply her AISH number at a pharmacy if she wanted prescriptions covered. But she had no idea what was covered. Or how much.
But I digress to vent. 

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