What does the future hold . . .

What does the future hold . . .

Does this question haunt you as it does me? How about, ‘what more could I be doing right now?’

As a parent of two sons, both having a developmental disability; these questions run through my mind every moment of my life. How can we prepare our life or our ‘after life’ so that our children do not end up living a life of ‘less’ but instead of life of ‘more’ or at the very least, a life of the same as if mom and or dad were still here.

Work, housing, transportation and social interaction are all matters that need careful consideration. In addition, we must factor in where we are currently at, in our case our sons currently need constant care or supervision and trips outside of our home are for the most part limited in time, distance and place. As an example, visiting our neighborhood grocery store can often turn into a very emotional and patience trying experience.

High school has been a great experience for our sons, they enjoy going there and know what is expected of them and with whom they will be spending their days with. But what happens when high school is over, then what? With each ‘phase’ of life come new questions and anxieties, most of which always work out as if according to plan, but right now I’m looking for the ‘plan’.

Speech is another factor, in our case our sons are for the most part ‘non-verbal’ and having a two way conversation is something I dream of but frankly not possible. Keep in mind that my sons understand very well what is being said and the intent; communication becomes much more than being verbal. I find myself at times frustrated and though my sons may not understand why, they do see very clearly my emotion and how it makes them feel.

Assuming the fact our sons have Down syndrome (DS) and that a common trait of those with DS is to be ‘happy and loving’ would be ok until you factor in Autism and now you are dealing with a social element that requires ‘patience’ beyond anything you may have ever encountered.

Emotionally the very act of discussing this topic for me, can often lead me to change the subject; crying about what our sons will ‘live like’ if we are not here to care for them is unimaginable. But it shouldn’t be, we have seen amazing things from amazing people in the care and time people have spent with our sons; so should we just assume that this will magically happen when ‘the time comes’? Or should we be doing all we can now to assure that the ‘net’ appears when our sons need it most?

Enjoy every moment of everyday and make progress everyday for what the future holds.

What does your future hold?

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About kellykrei

Husband to Michele Martinson Krei for 32 years and father of 21 year old twin boys, Kyle & Hunter, both endowed with Down syndrome and Autism Spectrum Disorder.
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2 Responses to What does the future hold . . .

  1. basekamp says:

    I was So having this day today with my youngest son. He also has an ASD and, altho he can communicate vocally, he is not very effective at it- choosing to try to get the listener to “mind-read” his intent. I know it will get better but some days it seems like we’re under a pile. Hugs to you & hope for the best for Kyle & Hunter.

    Like

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