Hi Jake
I think you will find the subject very interesting and enlightening. There are many aspects of DS that can be challenging and equally as many that are so rewarding that sometimes it takes your breath away.
My daughter who is 27 years old now, and one of twins, her twin sister does not have DS, went to mainstream, nursery, infant, junior, high school and studied a BTEC course at our local mainstream college.
My daughter left school with two GCSE qualifications, Drama and IT, which helped a lot when she was doing her BTEC course. When we moved she was halfway through completing the qualification but sadly the area, although initially said they would support her to complete the qualification, was not as forward thinking as the area we had come from.
You might wonder why I would uproot us to a different part of the country. I believe that my daughter has gained far more independence and socialising abilities by our move than had we stayed in Staffordshire. Over the past ten years of living her my daughter has learned to read music and play the guitar, continued with her trampoline lessons in which she competed with able bodied contestants and won gold. Gained a Level 1, almost Level 2 qualification in English at a local college. Worked as a waitress and prepared for service in a bistro, is now attending a local charity cafe and receiving further cookery training.
My daughter can cook, iron, clean and tidy her room, make her own bed, wash and hang out washing, and her latest venture is learning to ride a bike. We go regularly to the local pub quiz, where she also goes on her own if she feels like it and I don’t. Is welcomed with her answers and by doing so has gained respect from her peers. She shops at the local shop and post office. Is well known to the local community and always comes back with a tale to tell after one of her outings. Though that can be said of all us. The shop is only a mile away but it can take an hour to get there and back when you are meeting so many people along the way.
Now for the negative. She is stubborn. I pick my requests carefully. Too trusting. Forgiving, even to those who have harmed her either physically or emotionally. Forgetful of everyday tasks. Believes that she can live independently without any need for support during the day or night. Would love to have a boyfriend, as long as they didn’t have DS, but on the occasions that she has been out with boys gets tired of them.
As for your last comments about becoming outcasts. I believe that she would be that way had we not moved to where we live now, as well as always being around the family. My daughter has had little input from social services, and we had no support until she was 14 years old and we received support through Direct Payments which is a support system that pays for personal assistants. You would do well to read the Care Act 2014 as to what is supposed to be provided by your local authority so as to give you an idea as to how people with DS should be provided for.
If you have connections and live in the right area and are prepared to fight for everything that will enable your young person to thrive and reach as near as possible happy and independent life then most people with DS will thrive. The danger is that they are institutionalised at a very early age and have little or no say, or even know what they like and dislike.
I have worked for the DSA in the past and used to arrange conferences and also have delivered many presentations on the subject of parenting children and young people with learning disabilities. I am happy to help you to achieve your ambition.
Best wishes Ildi
