Sunday, January 22, 2012

Special Manners 101: We all get worn out

I am under half way through 2 months of extra appointments, endless phone calls, and unwinding red tape. I'm not sure what is going to pop up after the end of February and I don't have the energy to think about it. I am already beat. Someone asked me how my day was. I told them that it was good because the fact that they asked on a Sunday meant no doctors could ruin it.

Let me fill you in a bit. My son sees therapists, a regular doctor. a neurologist, a dietician and a muscular specialist all the time. We average about 2-3 appointments for him a month besides the three therapies a week. Until the doctors find something else to look into. We are looking at the mobility folks, the eye specialist, the ENT, a sleep doctor and study, new braces which require a casting and I can't remember the rest right now. This all with in the first 3 months of this year. I also have a medically fragile husband, an autistic daughter with 3 therapies a week, a fairly above average almost teen and my medically interesting self that all have our own issues.

Then there is insurance issues that need to be dealt with, schooling to be done, money to be earned, laundry to be folded..... all the normal stuff and then some. For every specialist there is a packet of paper work, tests to go through and the stress of going through it all. There is the lack of sleep from pain. If The Boy can't sleep, than mom doesn't sleep. Normal stuff in normal families can wear a parent thin. Special needs parents deal with all of that and so much unrecognized more.

Special Manner #107: You have it tough, and so do we - so give us a break.

When a parent has a bit more on their plate some things slip off the edge. Don't judge. Again, it is just that simple. If you are up for a bit more, you can always offer to help, but try not to push to hard. Sometimes we don't think the crumbs need to be dealt with or we know they can be handled later. No big deal.

If a special need caregiver is a bit sharp with you, don't take it personal unless you did something to deserve it. Lack of sleep, proper food, and general mind rest can  make things a little harder to smile through. We can be a bit um... short tempered. Keep in mind that we try to be calm for the kids, not cry in front of them, and not yell at the doctors... that means anyone else is fair game when all that locked up crap is too much to deal with anymore.

We worry about our child's life, money, the car, the insurance, the other kids, our spouse, the house, the law, the school, the therapy, the doctors, the money (yes I repeated that on purpose... it is a huge worry tied to every thing else,) if we are doing the right thing, are we doing too much, too little.... I could keep going but I would hope that you get it.

We don't want to take it out on others. We don't like to ask for too much help in case we use up what we may need later. We know our kids best. We don't always trust others to do our job. It's hard for us. Be patient when we start chewing on your leg or puling out our hair. We will be fine after we put in some time in the adult time out. 

My point is that sometimes it adds up to a meltdown. It isn't that we don't like you, love our kids, or are ready to call it quits. It just means we need to chill out and regroup. We don't need interference that makes an already tough life tougher. We really don't need to be judged if the dishes aren't done, the laundry not folded or we forgot to make the bed. At least we changed the diapers, paid the phone bill and went to the 12 appointments in the last 2 weeks.

Remember that you are not alone and that you can make it through the storm... after all, look how far you've come.

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