If you’ve kept up with me so far you can see that the families that have shared their stories are sharing from places of deep pain. We all thought, like Grace, that life would be very different from what it is.
The type of disability doesn’t really make a difference to the degree of stress and pain we deal with. It also doesn’t make a difference how the child entered our family. The degree of difficulty is mostly the same.
While all parents worry over their children’s future. Stress about the choices that their kids make and do their best to fight for their kids; when you throw in a disability it sends that whole stress/worry/fight thing to a whole new level.
The crazy thing about a hidden disability is that anyone who doesn’t know about or understand that the person has a disability expects that person to behave like an average person. At least if you are missing an arm no one is going to expect you to play basketball or write with a missing limb. Yet people expect our kids to make choices, make changes easily, organize their thoughts, process information, respond appropriately and learn like everyone else.
As parents we can hope that our children will progress. However, they will only ever be able to function within the parameters of their disability. That person with a missing arm may be able to get so good at using a prosthetic device that they’ll be able to play basketball, who knows. Or like Bethany Hamilton in Soul Surfer, be able to learn ways of coping that allow the return of some freedoms. They will, however, only be able progress within the parameters of a missing arm. There will be somethings that they won’t be able to do to the full extent of what they were able to do with two arms.
The brain has an amazing elastic ability to learn, but brain damage is still permanent. A stroke victim is able to relearn many things but perhaps to the level that the person was before the stroke occurred.
Teachers, professionals and the general public expect my son to respond and behave like an average teenager. He can’t do that. There are parts of his brain that have been affected by the FASD. There are parts of his nervous system that have been affected by trauma. There are parts of his emotional make-up that have been affected by anxiety and RAD. Apart from a miracle, those things can only be healed to a certain degree. He can progress, and he has, but there will be a limit.
One way you can be supportive of our families is to let go of your expectations of our kids.
* they might not be okay with hugging, check first
* they may never say, “I love you”, keep saying it to them
* when you give them a gift their response might be flat or even inappropriate, don’t take it personally, it might take days or weeks before you see the real response to the gift
* they may not understand your emotions or respond appropriately to them that doesn’t mean they have no compassion
* they may not be able to handle family gatherings or large crowds of people for a long period of time – let them leave, or not even show up, it doesn’t mean they don’t like the people gathered
* you may have to show them repeatedly how to do something, don’t expect that they will get it on the first try or even the tenth or that they’ll remember when you ask them to do the same thing tomorrow – some stuff just doesn’t stick
* don’t say, “Read the directions.” they might as well be Greek
* when they say they can’t eat something, respect that, don’t push
* if they need a light on to go to sleep or a certain series of activities, respect that
* they may need to bring all their own ‘stuff’ for a sleep-over, they might not make it through a sleep-over, respect that
* don’t expect good grades, rejoice in whatever accomplishment they’ve made
* do NOT compare them to a sibling or friend or cousin in any way, they aren’t the same
* there’s a good chance they aren’t good with money
* ALWAYS keep a promise if you make one – this is really important! Trust is a huge issue and once they decide they can’t trust you, well, they won’t, that’s it, you’re done.
Tomorrow we’ll look at those expectations from inside the family!
**If you are new here you might want to know that this post is part of a series on hidden disabilities. I am going to be continuing this series for all of October as part of the 31 Days Challenge. You can see all of the amazing topics over at The Nester’s! To go back to the beginning of this series click on the Alphabet Soup tab and you can see the indexed list of chapters.