What if this is a good as it gets?

I’m willing to bet that it is.

One day, our children will have grown up.

For many of us, as special needs parents, that means they will still be living with us.

We may still be feeding them, changing them, cleaning them, and putting them to bed.

Our homes will look like small manufacturing plants with the amount of assistive devices we will need and that’s just to get them to the bath.

So what then?

What happens after our children have received the best that society and culture can afford to them?

They will always, always be our children and need us.

If you haven’t had these thoughts yet, I don’t mean to scare you.

My wife and I look forward to the future with our son.

My wife has her retirement car picked out for her and my son already (it’s only some indefinite period of time away, these are important decisions).

However, we are left with a rather stark reality. The cute factor will be gone.

My son will need to be shaved and all the other daily maintenance routines that we do for ourselves, he will need some degree of assistance with.

He is already five and it is noticeable that he is a larger than typical size to be pushed around in a stroller, which will in the very near future be a wheelchair of some sort.

The day will come when all of the kid friendly products are no longer useful.

They won’t come in appealing colors or nice materials.

All of the support that we can drum up to support our child because he is still a child in terms of advocacy for treatment options, etc will run dry outside of our immediate circle of influence.

The “we have to do something for our children” crowd mentality will dissipate.

We will be left to our own devices, left to find another doctor because he is no longer pediatric and find willing, understanding therapists that will work with him as compassionately as the ones he had when he was younger.

One day we will be faced with the difficult decision about whether we can provide the best care for him as we age.

Questions you ask yourself about your aging parents, not your child.

Do I think my future as bleak as all of this sounds?

I would be lying to you if I didn’t think it could be.

However, there is always hope.

There is always an unheard voice.

I think we are that voice.

We cannot quit and we cannot grow weary.

It is the most enduring and grueling endurance test on the planet.

I think we can win. I think we can change the story.

I don’t think our children have to grow up to be the cast-offs from society because of their differentness.

I would like to think we are a more involved generation of parent caregivers to our special needs children.

Or maybe we’re just more connected.

Our goal is not have them sit comfortably from the side of life and watch it go by with unexpressed frustration.

Our goal, our life’s work must be for them to be involved in life, to participate, to be engaged.

I’m not sure about you, but just because I put the first third of my life behind me, did not mean that I stopped participating. 

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