Wednesday, April 27, 2011

Forced Perspective

I have written about perspective and how one perspective isn't always the right one or the wrong one. Lately, I have had a lot of people that have different perspectives and ideas and outlooks in my life. Some I can say I am happy to have there, others... well not so much.

Why? Not because their outlook was wrong, incorrect or different, but because the victim can't see outside a box. You know, the people who always tell you that you should walk in their shoes but refuse to walk in yours. The ones that won't give you the benefit of the doubt and you always feel like you have to defend yourself.

Some things I have learned in the journey is that even if you have a kid with special needs doesn't mean you know what someone Else's life is like. But that also means that they don't know what it is like for me. We all may experience similar parts of special needs worlds ( like appointments and therapy and more therapy) but the outcomes, life challenges and life altering things are VERY different.

When I had Tyler my sister had been in a situation where her child was VERY sick. He had been virtually in kidney failure since the day he was born and no one knew it. When they did figure it out it took lots of things medically to keep his life going. He had a few issues with growth that she had to deal with but eventually he was sick enough to need a life saving transplant that has changed his life.

She wrote me a letter that I got when I was in the hospital recovering from a c-section with some advice. I don't know if I know where the letter is exactly but I can probably say after 5 years not all of it applies. But some did then and it was VERY comforting to know she had been through a lot and got "it." She never stepped foot in the NICU with her son, but she did with mine. She never went through painful brain surgeries with her son, but did have to do painful things to him to get him to grow. Her path was VERY different, yet there is a similarity into how we are feeling.

Kayden is now a healthy, crazy, to much energy almost 7 year old who you would NEVER know had any of those problems. Her "special needs" world is small small and consists of not one thing that I have to do as Tyler's mother. But she still worries like I do when he needs tubes, or a small surgery and even a large one. Why? Because to her it is a BIG deal. To her it is her world and her pain and her suffering that is real to HER. To me, it isn't brain surgery but I think that for her it is a big deal and she deserves and needs comfort.

We had infertility issues right along with my brother and his sweet wife. We were comparing med lists for several months to cross off what ones the other is NOT doing and thinking we were lucky. We got to the end of our financial and emotional rope much sooner than they did and they kept going. We opted for a cheaper course of meds and got them maxed out and decided we were all done and scheduled a hysterectomy for July. We got pregnant, they are still stuck in that HORRIBLE roller coaster ride.

I sat through 2 pregnancies of my sisters laws and while I prayed for them to have healthy children and that they were happy, I was miserable. While I was so thankful that they all HAD healthy children my heart was breaking. Telling my brother and his wife that we were pregnant was hard and heart breaking for them and for us. I don't know what their journey is like for them. But I imagine ours and think, that must be really hard for them and share what I can in what I feel is comfort. In return, I had hoped and prayed that that comfort would come to me in our time of need.

I had found a long lost college friend while we lived in Arizona and found we had gone through a lot of similar but not similar things. She has children with Autism. ( I will be the FIRST one to stand up and say I have NO idea what that is like. ) I am open to wanting to learn and understand but do know that Ty is a sensory ball of fire like those that I do know with Autism. I also see how functioning they are and am quite jealous of their functionality in society. But I don't know what it is like for them

These are the ones that never want to walk in my shoes. The ones where similarities are there but vast differences aren't. They complain about this and that and when another perspective is brought in they say something like " You have no idea what it is like for me." My answer.. no I don't. But do you know what it is life for me? When they tell me that I should walk in their shoes, that means they want to walk in mine....right?

Recent example: Lately Ty has not been getting on the bus in the morning. For one reason or another we miss the bus and I don't have to leave to take him to school until 9. Every morning there is someone parked in the Handicapped stalls that doesn't have a permit who is sitting there sipping her diet coke waiting. The OTHER stall is filled with another mini van doing the same thing. In between that stall is places for van access of kids with wheelchairs. And a car that squeezed its way in.

We end up not parking there and having to drive around the school or around the side of the building furthest from his classroom. For me to walk that distance is no big deal. But for Ty it is a HUGE deal. He gets tired, he starts to trip and he wants me to pick him up. All the while women in van 1 and 2's children hop out and run to class and mom drives away.

Well there are people who don't think that is wrong. One said person said to me about the situation. " I park in handicapped parking all the time while I wait for my husband. I see nothing wrong with it. But I have a handicapped parking permit now and it totally helps when have to walk into the hospital." Um yes.. see when you NEED it, it does its job. What you failed to realize is that WE NEED IT. And someone was using it who DIDN'T NEED IT. But since you have physically healthy children with all working appendages you don't live in my world to understand why that would be offensive.

Why then do you expect me to want to try and understand you on sensory issues.? Or why would you think I wouldn't feel obligated to defend myself against what you have to say? If you are complaining day after day of bed rest and all of a sudden hit a magic number and have no restrictions would you EVER be complaining. Because we know if you were EVER in the NICU it would be way worse than anyone and the complaining wouldn't stop... even though you "said" you were so over being pregnant.

The "reminding" it could be worse can sometimes be the forced perspective we fight against. I fight against it when I feel attack. I embrace it when you will discuss it as an adult. We all have different things we see. Are they right? Are they wrong? No... but perspective changes depending on the path we are on.


singedwingangel said...

When my middle child was in PICU on life support I was a basket case. I could not wrap my mind around the fact that the chicken pox had gotten him there ( he also had RSV but that was exacerbated by the chicken pox). In the room next to him was a 16 yr old boy who had collapsed in school on life support, he had meningitis, other side a 4 week old baby who crashed in her pediatricians office from RSV. All of us knew fear and worry and trepidation, but in our own shoes, what we were dealing with. As bad as Jesse was I could not imagine him being in a coma from illness as the 16 yr old was, and had been for nearly 3 weeks. Jesse's coma was medically induced to allow his body to heal. It is a scary place to be, and yet even when we think we have it bad we look around and realize that there are so many others who have it worse.

Miracles Happen said...

And not just having it worse, but that some have walked that line so many other times that they forget that you haven't and forget to show the compassion that you deserve. They aren't trying to one up anyone. Sometimes those who have tried to give the compassion never feel validated in their own trials. It's a give and take by those who want to force a perspective on someone..

Joy said...

Can you mention the parking situation to the school? Maybe they can post a notice or stand guard of the spots for a few days and remind others of what they are there for.

I had a disabled parking permit while I was on bedrest and had to be in a wheelchair when I went out. I refused to let my husband use the disabled spots though. He could easily wizz me across a parking lot in my wheelchair and after having a mom with ALS I understood that others in wheelchairs, or not, are not nearly as mobile.

Life as a Convert (Khourt) said...

I cant stand when people park in the handicap stalls.. Pisses me off to no end especially when they dont need them. The other day I was out with my boyfriend who is in a wheelchair.. I know how hard it is as a parent when somebody is in the spot but to see first hand how hard it is for a more grown person is even harder. He doesnt have anybody to help him out when he needs it. So that just makes me even more angry.