First of all, let me say that this is very much a "keeping it real" kind of post and it might be a little different from my usual tone. I try to post a lot of positive things on here and on social media as well. I like to talk about things we've done as a family, things that have worked for us, and finding the good in tough situations. I also really like to post pictures of our kids and dog because I happen to think the three of them are pretty stinkin' adorable.
But I've read several different posts here lately about sharing only your "highlight reel." Meaning you post only really spectacular stuff on Facebook so that the world will think you have it all together and that every single detail of your life is uber fabulous. Now it's kinda hard for me to keep a straight face as I type this, but if any of you read my stuff here or on Facebook or wherever and mistook me for someone who has her crap together, then I am truly sorry for that. I'm someone who bumbles and stumbles and makes a lot of mistakes but I do try really really hard.
For me it's a fine line between wanting to focus on the positive and also wanting people to know what our life is like dealing with autism and immune deficiency. On the one hand, we have a good marriage, two precious kids, a service dog, a host of family and friends that love us, a home and many other blessings. Korban can talk, tell us he loves us, and give hugs and kisses.
We like to be out and about so our kids can experience things. We believe hands-on is the best way to learn. We've been to parks, parties, movies, restaurants, children's museums, science museums, plays, aquariums, zoos, even Sea World and Disney World, water parks, Churches, conferences, concerts, as well as just about any sort of sporting event we can get too. Due to Korban's autism sensory issues, we've had to work very hard for these things but it's been so worth it. I can look back and say there was honestly much more good than bad. Most of the time there is usually some bad with all good. There are moments to overcome. I'm not always the best at pushing on--I'd rather give in and give up most times, but not Brad. This is why Korban can go to ball games. He doesn't just go but actually soaks it all up to talk about for weeks. I could do a post just on Korban's sporting experiences. There has to be a time of overcoming the bad such as anxiety and overstimulation. It's a revolving door that has to be dealt with before enjoying the good.
But speaking of the bad...we've also had no time for each other or even ourselves, little sleep, black eyes, busted noses, scars from being clawed until blood ran down our arms, bite marks, bruises from being hit that hard. Korban has told me that he wants a different mother and wants me to die. We've fought to protect our daughter from a brother who can't control his behavior sometimes. We've fought to protect him from HIMSELF.
Korban has autism, severe anxiety, obsessions, compulsions, severe sensory issues and an immune system that doesn't work as it should. He cries, screams, and has meltdowns in which he sometimes hurts himself or lashes out at whoever else is around. He throws and breaks things, some of them that he cares very much for, then is upset over why it happened and when he can get the next one. Basically there is very little impulse control. Over the years, he has picked his own skin off when nervous, pulled his hair out until he had bald spots, bit himself, banged his head, and has even tried to poke his own eyes out on several occasions. If that wasn't enough, every four weeks we go to a children's hospital three hours away to hold him down while he screams and begs us to stop just to get him hooked up to an IV that will infuse him with a blood product full of immunoglobulins that will compensate for what his body is not able to produce.
Was that hard to read? Are you glad I just stick to the happy stuff mostly? This is our life, ALL the parts of it. So I'm saying it now to let everyone know the good, the bad, and the ugly. Things aren't always rainbows and butterflies. We've had a lot of hard times, but we choose joy. I've said it before, I'll say it again: hard does not have to mean bad. I've had a lot of down times and been consumed by worry and fear but I know I can't stay there. My family needs me to be more than a bitter, angry shell of myself.
We do see lots of doctors. Korban takes medication. We use nutritional supplements. He does intensive therapy three days a week. We recently got a service dog for him. Things have been looking up and we are SO thankful. The aggression and self-injury, which had always been the hardest thing for me too deal with, is better than it's ever been. We've worked so hard and it's finally starting to seem like we might be getting somewhere instead of spinning our wheels.
So that's why I was kind of blindsided when I heard this week that there are people who are concerned we are doing too much for our kids. I believe the statement was "too many children's museums and pizza places and does Korban actually need all those doctor's appointments anyway?" (News flash: he does. I mean, we don't HAVE to do so much therapy but given all the issues I mentioned a couple paragraphs ago, I really don't feel like sitting on my hands and just hoping it all goes away. As for the IViG, I'm pretty sure that if you don't follow the doctors plan of care for immune deficiency they call that medical neglect.)
Needless to say, when I heard this I was upset to say the least. And I explained and justified myself. The point by the person was, we shouldn't be spending our money to do those sorts of things. I mean, for crying out loud, I don't even have a job! I spend my days running back and forth to therapy and eating pizza after playing at the children's museum you know. ;)
I told Brad awhile back that he couldn't afford me. He laughed because he knows it's true. What I was saying is, we literally could not afford to pay for somebody to take care of our kids every day and do what I do.
Anyhow...we aren't rich by any stretch of the imagination. I'm paying student loans on a degree I'm not using. But I'm so glad I get to be home with my kids. I really wanted to be able to stay home with them and I'm incredibly thankful it worked out so I could. Brad does have a good job and he works very hard to take care of us.
We are on the road a lot, due to all the aforementioned appointments. So we've always tried to do at least one fun thing while we are out in hopes that our kids will remember that instead of just an endless parade of doctor's offices, IV sticks, etc. We're already there, so why not make the best of it? And we KNOW we aren't rich. We've gotten very good at planning outings, purchasing year long passes while they are on sale, scouring Groupon and Living Social for deals, saving money by packing our own food, etc. I need to do a separate blog post on how to do family outings on a tight budget because we've gotten it down to a science over the years. And we've done it because it's important to us.
Why is it important to us? Because, unlike the person making the comments about us, I don't think that just because we have a child with disabilities we need to hide out at home and feel sorry for ourselves all the time. How is Korban going to learn how to navigate the world if we don't take him out and show him? I'm glad we started young and I feel like our little "field trips" are just as important as any therapy he's done.
Also, it builds family unity. When Selah first started play therapy back when things we so rough with Korban she basically told the therapist that she'd like for him to just move to his own house and she could go see him every now and then. :( It went from that to seeing our family as a team. She later told her therapist that she helps to take care of Korban, he plays with her, and Mommy and Daddy take the family places so we do fun things. Much happier scenario in my mind.
Moving along to the second incident I mentioned; the second kind of person. Friday afternoon the kids and I were walking Jet on the trail behind our houses it had been a long, tiring week and I was glad it was the weekend. While we were walking, my cell phone rang. I answered it and was surprised to hear the voice of an old friend of mine, someone I had not gotten to talk to in quite a while. She told me that she had just had me and Brad on her mind and that she was thinking of us and our kids. She said she knew we had been through a lot with Korban and that we do a lot and some days we get up and think "why am I even doing this?" (It's true. Some days I just want to climb under a rock.). But she went on to say that she thought we were doing a great job and that our hard work was paying off because Korban is doing so well. Y'all, it blessed me so much. I can't even explain it! Not only did it bring joy to my heart, it made me realize how much I want to be that type of encourager to others.
I've now realized that I got way too upset about the negative encounter. Honestly, It's pretty cool that someone thinks we are doing too much for our kids as opposed to not enough. Although I'm sure there are those out there that feel that way too. You can't please everybody and unless you are living in their situation you really don't know. I'm one of those who just wants everybody to be happy with me, but the older I get the more ridiculous I realize that is. All that being said, there really are two kinds of people in the world: Those who build others up and those who tear them down. Which are you going to be?
