What Will Ben Need to Know?

Here we go again!

“What does Ben need to know to survive this world when he is 18 and what are we doing right now to get him there?” Not too long ago in Ben’s IEP meeting this question was posed to me.

It’s this type of question that causes me to stare at my ceiling at night. All. Night. Long.

When Ben was little and first diagnosed, I experienced grief, anxiety, loss, fear and shock. Shock is an appropriate word, it reminds me of a college day experience. My roommate played rugby and she needed more players for her team, knowing I played soccer she told me, “Lisa you will love rugby, it is just like soccer.” 2.5 seconds into the game as my head is buried 6 inches under the dirt I remember thinking “This is nothing like soccer. This is NOT what I signed up for.” Let’s be honest don’t most of parents have this thought at some time in the parent journey? Usually in the delivery room?

Being a parent of a special needs child adds yet another dimension to this thought. Don’t get me wrong I love Ben with all my heart and being his mom is the best thing that has ever happened to me. But there is a degree of surprise, of unexpected loss (AND gain) and fear that you might not be able to be all that your child needs you to be. Let me re-phrase that you WON’T be all that your child needs you to be. 

Yes parenting a special child brings the surprise, the shock and then you settle in. You find your new normal and begin to adjust, recognize the gifts around you especially the ones that those parents with “typical” (who’s typical?) children might not notice. This is the place I have lived in for several years now. I have gotten comfortable, not that life hasn’t come with its trials, but I have found peace and joy in the situation I am in. 

Now however I begin to embark on this new crazy adventure of anticipating adulthood. And those feelings of fear, surprise, anxiety fill my heart and my mind once again. What DOES Ben need to know when he is 18? The statistics say that 50% of those with autism graduating from high school are not able to find employment, what if Ben can’t find work? What if he can’t drive or navigate a bus? What if something happens to me? What if? What if? What if? 

Honestly I wish I had some great wisdom but maybe this post isn’t about wisdom, instead it is about honesty. I am scared. I love my son more than I could ever express in a silly little blog, I would easily give my life for him 100 times over. And I am scared. 

I am, but I will not allow fear to overtake me. I will not allow fear to paralyze me. I will not allow fear to steal the gifts that God has set out for me. I won’t because I have all of you. 

You support me. You encourage me. You love me. You have prayed for me. You have prayed for Ben. You love Ben. You support Ben. You encourage Ben. So I say thank you, I am deeply grateful.

It takes a village to raise a child, this is most certainly true.