Our voyage into the somewhat scary, very much unpredictable waters of being considered special needs has been at times slow, creeping up on us as we just moved through life. However, at other times it has been very much like careening down the side of a mountain without any breaks or ways to stop or slow the descent. Between my three kids, the list of special needs is long, the days are hard, and the future looks uncertain. The things that most parents take for granted, that most kids are just able to do, I am not able to take those things for granted, my kids are not able to 'just' do them.
Trying to describe to someone what our days are like is as difficult as trying to explain the concept of chewing gum to someone who has never seen, tasted, or heard of it. I am learning that everyone's experience with autism or epilepsy or anxiety is vastly different. Just like there are countless forms and varying degrees of severity that seizures take, so too there are countless forms and varying degrees of impact on day to day life that mental health issues take. Each of their chronic health issues bleeds over into every area of their life. There isn't one aspect of daily life that isn't impacted.
I am not sure if it is their unique make-up, or something tied in with their issues, but they are intensely private, not wanting to share much if any details of their lives. That makes it hard for me to communicate to others, especially those closest to us, why we can't or don't do certain things. I feel (fair or unfairly so) pressured by others to prove how hard our days are or for us to conform to what they feel will "fix" a situation.
So, in case you know someone in your life right now or will at some point in the future come into contact with someone who is considered "special needs" can I perhaps offer some suggestions for how best to support them? These thoughts are ones that I have personally had, as well as some from close friends walking a very similar path to us.
1) Listen. Just listen. Don't offer advice, don't compare them to another family you know that has that same issue...just listen.
2) Don't be surprised by the ebb and flow of the good, the bad, and the ugly. Sometimes there isn't a reason for things to just bottom out. Sometimes the family going through the rough season just has to wait out the bad days. Sometimes one moment things can be awesome and then out of nowhere it's as if a switch has flipped and they are as far from awesome as they can be.
3) Don't assume just because you see them on a good day, that that is their status quo. I know for us personally, we try to stick around home during the awful moments. So if you know us personally you see us at our very best moments, but more times than not, that's a far cry from our "most" moments. Does that make sense?
4) If you have a cold, a tummy ache, any kind of illness at all, please stay away. Often times any kind of illness (from a minor cold to the flu) causes special needs kids issues to flare up. It also tends to take them twice as long to kick something as it does for someone without the issues.
5) If you see a child (especially an older child) throwing a tantrum, please don't assume it's a result of bad parenting or that the child is "too old" to act that way. Please don't stare and above all, please, please don't comment on how you would handle the situation. If you haven't lived with someone who has a mental illness, then truly, you have no idea how you would handle the situation. I can promise you that as a parent, more times than not, we are doing the very best we can. We are trying to get our child to a spot where they can calm down and we are trying to minimize the disturbance to those around us.
6) Try your best not to pressure the family to get out and do more, be involved in x,y, or z. That just adds more stress and more of a feeling of all that we are missing out on.
7) On the flip side, offer invitations. We like to know that you thought of us. We just hope you understand that any plans we make are subject to change. The hardest thing that I have had to get used to is not being able to plan outings, friend times, field trips etc;
8) Please don't assume just because they are ____ age, they should be doing _____________. Just because they are six, they should be reading. Just because they are ten, they should be in fifth grade. Just because they are fifteen or sixteen, they should be learning to drive. When a kid has special needs, it changes everything. They develop differently. Generally speaking, things are harder for them. When a grandparent or an aunt or an uncle places them on the spot and asks them, "Well, why can't you ___________, you are ___________ years old now." how do you think it makes that child feel? I will tell you because I have seen the fall out from thoughtless comments like that before. It hurts them. It makes them feel like a failure. They are not behind because they are lazy. They are not behind because they don't care. They are not behind because they don't work hard. They aren't behind because we homeschool. They are not behind because they were just waiting for someone to spur them on to greatness with a comment like that.
9) Occasionally send a card or a note of encouragement, an email or a text to the family. Just to let them know you are thinking about them, praying for them, pulling for them. It can feel really lonely to walk this path, I cannot tell you how much I have appreciated random acts of kindness. They have truly made an impossible day doable.
10) If you are close to the family, spend some time reading up on the generalities of their issues. It will help you understand a basic frame work of where the family is coming from.
Day 8 update - plugging along on my less sugar challenge. I haven't had dessert in almost two weeks now - that is a HUGE deal for me :)