0<\/span><\/a><\/div>The Disability Life (from mom)<\/p>\n
Life is what it is\u2026\u2026 everyone is born, grows up, goes to school, makes friends, college, family, and such. We hope for the best and try to overcome hurtles. One thing we don\u2019t expect is to have a different life from the beginning. We hope our children are born healthy, happy, five fingers, five toes. Unfortunately this isn\u2019t always true. Many children are born with differences that make life a challenge for them and their families. You have to consider things you would have never thought of.<\/p>\n
For most people getting in and out of your car is such a simple act they don\u2019t think about it. Those with wheelchairs or walkers it can become an event at times. After doing it for a long time you begin not to want out go do things just because it takes so long or you rearrange your whole schedule to get some things out of the way when you don\u2019t have wheelchairs and such to get in and out. Small town trips or errands are difficult because the constant getting in and out. Or space for bathing, you and I can just walk in and out of the bath or shower. A lot of space is needed when bathing a child or adult that cannot move for them-selves. I never thought how important carpet would be until I saw how it helped my children when trying to crawl. So now I need to make sure I get a home that has carpet. For most people it\u2019s the other way around. You want hardwood floors. It\u2019s better really, less dust, good for asthma, and such. \u00a0Its many small differences at times you wouldn\u2019t even have the first thought about.<\/p>\n
You really need to plan for the future that can or will take care of your child if anything should happen to you, realizing that you will be taking care of your child their entire life. You expect to be like every other mother or father in that \u00a0once they reach their teens you can move on to the next part of your life and pursue a career, school, or anything. \u00a0There are so many things that are different in the life of disabled people; cars, homes, play, trips, ongoing therapy, doctors, equipment needs, overwhelming costs, and so much more. The thing is; this life is so different and it does take a lot from those taking care of them and many do not understand or know what all is involved until they experience it themselves. Waiting months at a time for equipment, appointments, tests, surgeries, the list goes on. There are rewards in this life such as a smile on your child\u2019s face, breaking those communication barriers, passing physical goals, and a great community of people that come together to help those that are disabled.<\/p>\n
My children have about 10 different doctors, 4-5 different therapists, 6-7 teachers and helpers, 2 home health nurses, a few organizations that have contributed to their well-being and happiness, and (to many to count) individuals that have and continue to help. It can become overwhelming scheduling, organizing, and making this all come to together. I have showed up once or twice the wrong day to an appointment or activity. Lol. After a while you just learn to laugh at yourself. All you can do is the best you can and know that as long as your children are happy and as healthy as can be then you are doing all you can.<\/p>\n
At the ages of 16 and 6 Derek and Dylan will need a new wheel chair every 5 to 10 years, need a new van every 10 to 15 years, new standers or walkers every 5 to 10 years, accessible adaptions made to their home when needed, special communication devices, new therapy equipment (bikes and such), household devices that make it easy for them to live every so often (lifts, self-help devices, bath chairs, beds, etc).\u00a0 Unfortunately, these things cost an enormous amount and like always it is the parent\u2019s responsibility to provide for your children as insurance or Medicaid does not cover most of these things. I was adding the cost of these pieces of equipment and over the course of their lifetime, it added up to almost 1 million dollars or more. I was amazed. I didn\u2019t really think it would be that much. And this is typical for all that have been faced with this type of life. I commend any and all who work so hard to help those that are disabled, their family, friends, and community. If it weren\u2019t for them, I don\u2019t know how any disabled person would have a decent life. They are a great group of people, I can\u2019t say it enough.<\/p>\n
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