None of Us are Alone

A friend of mine invited me to join an autism spectrum family support group on Facebook. The administrator of the page has a son that has been diagnosed with Asperger’s. He is about the same age as Travis.

I accepted the invitation and then sat down and read through her posts and the related comments. Her posts detailed stories and experiences of raising a son on the autism spectrum. I was surprised at how many experiences we had in common. And I am reminded that our family is not in this alone.

The further back I read in her timeline, the more I realized that all of us parents of children with different abilities want and hope for the same thing. That our children become able to live independently of us. Because they are likely to outlive us.

That they find a path to happiness.

Maybe a job or volunteer opportunity that they enjoy. Community activities that get them out of the house.

And we worry about our expectations as parents. Are we asking too much? Are we not pushing hard enough?

I know that I am constantly second guessing every decision that I make.

I want to honor Travis’s wishes. But maybe with a bit more encouragement (or nagging) he can accomplish more than he thinks. Maybe he is not giving himself enough credit.

With most parents there comes a day when raising children that the parenting is done. This is the case for us with our daughter, Corey. We try to offer advice only when she asks for it. We understand that she may or may not follow it. And we are ok with that. Because we know that she will come out of whatever situation alright. No matter what decision she makes.

Parenting Travis is different. I just do not see an end in sight. I have been working so hard to lift him. It is a heavy weight to bear. Most times I feel like I am working harder than he is. But am I? Maybe it takes a herculean effort on his part to just get out of bed.

He tells me that I do not understand. That I cannot know what it feels like to be him. He is right. But I am trying.

I want to let him choose his path. He just does not understand the reality of his situation. And when his life gets to be too overwhelming he goes to his fantasy world. A world with dragons. Where he fights evil. Where he fits in. Is even a hero.

Travis is an adult. But I wonder if we will ever get to the “give advice” stage of raising him. The idea that we will have to continue parenting forever is mind-blowing. And gut-wrenching.

We love Travis very much. You already know that. But carrying the weight of his needs gets heavy.

That’s why it is important to have support. Our friends and family offer support. Writing this blog and reading your comments helps me. If reading our story helps people, it makes me feel good.

And being a part of a support group helps. Sharing ideas and struggles. Knowing that none of us are alone. Knowing that we have a place to share our load makes it easier to carry.

In one post on the support group page the writer shares that her son is inside a business asking about the possibility of getting job training there. In her post she says, “I hope they are nice to him”. (Ok, been there.)

In another post the writer shares that her son decided that he couldn’t go where he had planned to go because his headphones were not working properly. Fortunately his new ones arrived in time so he was able to go. (Been there.)

She writes about choosing our battles. (Been there. Quite a bit actually.)

She also writes about wishing there was a better system in place to meet the needs of her son. (Same here.)

She writes about getting advice, no matter how well-intentioned, from people that have not lived her experience. (Yep, you guessed it. Or more likely read about it in my blog. Been there too!)

Apparently we all worry about the prescriptions and medications that our children use.

And about moving our kids into their own places, because it is good for them. But admitting that we need it too.

There were posts about the Department of Vocational Rehab wait lists for job coaching. Working through disability paperwork. Our children being sensitive to our moods. Living in a fantasy world. Blaming parents when things do not go as planned.

Sound familiar? I think I have hit upon most of these concerns in my writing.

One thing I noticed while reading comments in this group is how lucky I am to live in Colorado. Not only because I love the outdoors, but also because it appears that the state of Colorado may have more supports in place for individuals with disabilities.

I am grateful to my friend for thinking of me and inviting me to join this support group. In reading down the timeline I also saw that my friend shared a few of my blogs to the group. I hope that by sharing our experiences I can help to lessen the weight for other members of the group.

“There will be days when it takes all the strength we have as special needs parents to hold it together. On those days BELIEVE in the promise of tomorrow and know that you are not alone.” - Author Unknown