I cannot speak for everyone, but I will do my best to help give a voice to people who can't express themselves.

My name is Paxton.  I'm 25 years old and I'm in college.  This is my fifth year, and I'm a long ways off from graduating.  I have Asperger’s syndrome, hereditary spastic paraplegia, Ehlers-Danlos syndrome, asthma, and eosinophilic GI disease.


I wish I were like all my friends who live in dorms, have snowball fights on the quad when there are snow days and drive around to Starbucks, Taco Bell and the diner near the school.  I wish I could drive anywhere.

I wish I was taking the same math classes other kids who have been here as long as I have are taking, but I'm not.  In my head, I guess I make up for this because people always say they wish they could draw like I do.

We want to be independent like other people our age but sometimes need your help.  That could be something as simple as a text message every half hour for young adults with separation anxiety to feel safe enough to hang out with their friends.  Or something like pushing the wheelchair if someone is too tired to push it but doesn't want to go home yet.  We know you say that it's like we can't make up our minds...we want to be independent but we want some help.  Sometimes the only way independence can happen is with your help.

We want our own space, but we also want to be somewhere safe.  My parents and I compromised on this by turning the extra room upstairs, which is next to my bedroom, into a den with a futon, table for my hamster cage, TV, and a place to put my DVDs.  I call the two rooms my apartment.  Maybe there is some way you can help your son or daughter feel like having his or her own space, like making a basement into a really cool room or making a spare room into a den like we did.


We want to stay connected to our friends.  If we can't leave the house or have to spend a lot of time in the hospital, this could be done by having our friends come over for a movie (but again, in our own space), or by setting up a webcam or Skype account so we can still feel connected.  Nothing feels worse than being out of the loop.

Some of us, even in our early to late twenties, are still not done going through puberty.  We might finish late.  Telling us we're acting like a teenager, while accurate because of teenage hormones, just makes us feel bad because we don't always know why things are happening to us.  Even if we know things about puberty, we still might not understand how that relates to us.  What's happening might scare or confuse us, and that in itself can put anyone on edge.

If younger siblings have moved out, gotten jobs, gotten married and are successful, please know that we sometimes feel bad, sometimes because we are not there yet, sometimes because we know we might never be there, and sometimes because we miss our siblings.  But please know that we don't hate our siblings.  They are different from us and we are different from them.  Everyone is different and we are trying as hard as we can just to be us.

Some of us can't stand to be in certain places.  We're not being brats who just don't want to be there.  It could be something about the bright lights, the large noisy crowd, the temperature, or seeing something that is upsetting to us that may not be upsetting to anyone else, or a memory of something that happened here.  Please understand that being in these places is not only uncomfortable, but can cause some of us to have panic attacks.

We know you work hard for us, and we love you.  Not every parent bonds with her 18-year-old by suctioning his trach at night, diapering and dressing his 24-year-old for bed, mixing tube feedings for her 22-year-old, or positioning his 19-year-old in her wheelchair.  But the ones who make life bearable for their grown-up children with special needs do.  

And we thank you for that.