It’s just hard, this thing called normal. And we want to share what we are up against, not so you can feel sorry for us, just so you can understand.
One of the things that I personally have a hard time with is when family and friends fail to realize that it’s harder for families with children and family members with special needs to do some of the “normal” things that people do on a day to day basis. Oh yes, don’t get me wrong, we will try, our other kids count on it, but it’s just not going to be common when our choices are to get a sitter and leave someone behind or consider so many extra things.
First and foremost – and likely the easiest to deal with – we have gear people! Our children have GEAR. Oxygen tanks, trach supplies, feeding pumps, special food, medicine, emergency kits. Where they go, their gear goes! But, with that handy pack mule (often known as ‘daddy’) we can move on, because this is where is gets a little more unpredictable and complicated for us.
Some of our children can’t walk on their own and can’t sit in a stroller for a significant amount of time. Often we are asked to go somewhere where Dylan can “just stay in her stroller.” For some kids this works, you would think being up with the crowd is optimal right? It used to work for us, but we have turned a corner. Dylan is developmentally around 18 months and as with every 18 month old, she is fine while we are moving her stroller, but don’t think about stopping because that just isn’t going to fly! She wants to be on the go! Her wobbly, unstable walking gives her a freedom that she won’t willingly give up unless she is being entertained. Neighborhood Barbecues? Harder.
Often more severe special needs people don’t have full control of their limbs so playing and entertaining themselves is very difficult, as is keeping them content when that are outside of their normal surroundings and toys. If we want to be able to go somewhere and it’s suggested they can just sit or lay on a blanket to play, sometimes this won’t work. They can’t easily see or get to their toys this way. Sometimes it will, and we will seek out those opportunities, but please understand… this might not always work for us. Parks? Harder.
A lot of children with behavioral special needs have issues with being over-stimulated. Lots of people, lots of lights, lots of activities? Wow, does this present an uncomfortable situation! Going the movies? Harder. And speaking of movies, some of us have very vocal children who tend to make noises and yell, and laugh out of place.
Most people don’t have to worry about what temperature their child is every moment and the unpredictable heat and cold of outside weather, not to mention water (swimming anyone?). It is not terribly uncommon for little broken bodies to lack the ability to adjust their body to respond to temperature changes. So for parents and family of these little ones their temperature is always top of mind. Heating blankets and cooling vests are a common need. So camping? Yep, harder.
A common diagnosis from brain trauma and other brain related special needs is Cortical Visual Impairment (CVI). One of the very common symptoms of it is that people with CVI are extremely sensitive to the sun. They are fine for small time periods, they can close or guard their eyes, but planning a day at the amusement park? You can probably count them out. We even tried these adorable baby sunglasses but they didn’t work for us. Being outside? Harder.
We have worries that you can only dream of. Being out of our comfort zone only makes those concerns and fears stronger. Going out to eat? Harder! Even if every other patron in the restaurant is understanding and patient, which we know isn’t always the case!
But more important than all of that, we want you to know, even though we recognize that life is hard and you might hear us wish our child could do something to make “normal” things easier, it doesn’t mean that we don’t appreciate every tiny little thing that they do. It doesn’t mean that we don’t see them for the absolute miracle that they are. We want to share our dreams for our children and how difficult things are without being told how appreciative we should be.
I do not intend to come off whining about how hard life is, because even with “normal” being harder, seeing the beauty, love and successes around us is a lot easier for families like ours. Many of us have seen someone we love right on the edge of death at least once, if not several times and this gives us an appreciation for life that typical families can’t imagine. Our special family allows us to live life a little more slowly and appreciate each tiny milestone for what it is.
Even though it’s harder, we wouldn’t trade it for the world.
And to those who do understand and go out of their way to make sure that our family doesn’t miss out on “normal”? We notice. And thank you, your help means everything to us.