Here is the info I included with the Blue badge application for what it's worth. I was going to use this as an attachment to the DLA form but now I may need to stress more "pyhsical problems!"
Additional Information- re; Amelia Loft.
In addition to her learning disability, Downs Syndrome, Amelia has no understanding of danger and reduced communication. She also has sensory issues that no professional has really addressed with me. Any loud noises, wind rain, a dog on the other side of the street or a friend walking in the opposite direct. This is all too much for Amelia to take in. She will just freeze, cry, hold her ears, cling to my leg and refuse to walk. Constant encouragement is needed.
Amelia has very loose, flexible joints and walks with a wide gait and hyper-extended knees. This ?stiff-legged? manner of walking affects her balance and co-ordination and obviously the speed and distance she is able to walk. She also tends to walk with her head down, perhaps due to sensory issues (?) so she obviously needs additional support to ?see? where she is going and avoid bumping into things.
Amelia now wears ankle-foot-orthotics (AFOs) daily for half the day. In addition to this, we have now been assessed and have a major-buggy. This now gives me more chance to be selective about when/where she builds up her stamina/endurance.
Amelia has behavioural issues and often just simply refuses to walk and sits herself down in the middle of the road/pavement. With such reduce communication, I find it difficult to discipline this and spend 5-15 minutes trying to encourage her to walk again. This can happen several times in one ?short? journey.
Amelia is above average in both height and weight on the ?normal? growth charts and is off the Downs Syndrome height chart completely for a girl of her age. She is just over 100cm and the average 5 yr old girl with DS is 97cm. I simply cannot carry Amelia for any distance and I feel by doing so I am giving her the wrong idea of what she should be doing.
Amelia has no understanding of danger, cars, falling, or strangers. Will pick up litter off the floor, has even attempted to pick up dog foul(!!!) No understanding of boundaries, will try to pull me over into peoples gardens or into the road and as we walk I am continuously ?pulling? her in the right direction.
She tries to grab at passers by, hold their hands etc. She will stop and say ?hello? to almost everyone who passes by. The most worrying thing about this is that Amelia has shown a distinct preference to men, and will quite happily approach strangers. Trying to teach her the danger of this would be way above her level of understanding.
I have to hold her hand CONSTANTLY, let go for a second and she would try to get away, I often have to lift her in shops, ticket machines?etc to manage.
Amelia will walk passed parked cars in the street and try to open the doors.
Getting Amelia in and out of cars in a major problem. She often almost reduces me to tears, as I struggle to get her into the car, sit her in the car seat and the belt on. I usually have to get right into the back of the car with her when she is making a fuss, it is the only way I have found that I can restrain her long enough to get her belt on and tightened sufficiently to be safe.
When Amelia is being co-operative, she still needs to be physically lifted in and out of the car. I have tried to give her the extra independence and let her get out of the car seat herself, but especially when she is wearing her AFOs (and shoes 3 sizes bigger than her feet) she has difficulty manoeuvring in the restricted space of the back of a car. To aid these problems as best as I can, I push the front passengers seat as far forward as possible, but I can only do that if I don?t have a front passenger.
I really feel this is one of our major issues and to find parking spaces where I can open up the door wide enough to get Amelia in/out the car safely and into her major buggy is just a nightmare. So much so, that now I just hate taking her out anywhere, and that is no way for us to live our lives and no way for Amelia to learn, develop daily living skills or interact socially.