As you might have ascertained from the title, this will be sort of "Debbie Downer" post. If that is not your cup of tea, I don't blame you, but this isn't the post for you.
Still with me? In that case, forgive me for whining and thanks for listening.
There are lots of extras that come with our life with our wonderful child who has special needs. We are regular parents who love our child, feed him, clean him, entertain him, teach him, discipline him, work to pay the bills, clean the house, grocery shop...you know all the normal stuff. Then on top of it, there is the extra running around to doctor's appointments. There is the research required to become an expert on a million topics you wish you knew very little about. Not only is there the running to appointments, but then we're the at home therapists too. We work SO hard for every little thing. There is so much work involved and so much of it is emotionally taxing as well.
The one that I left out is the topic of this post: advocacy. It can be rewarding at times, like when you accomplish something that will make a difference for your child, or when you raise money or awareness for your cause, but mostly it is just hard...and stressful. It is so confrontational. I feel like I am always fighting with someone.
I fight with the therapist who wants to discharge my son prematurely due to a "plateau," defined as several weeks without measurable progress.
I fight with the doctor's office who overcharges us.
I fight with the insurance company who won't cover needed treatments or medications.
I fight with evaluators and teachers who give unfair and inaccurate assessments of my child.
I fight with myself over decisions. Decisions on how to proceed with therapy or treatments. Decisions on what battles to fight.
Gosh I am so sick of fighting all the time. The stress, oh the stress of it sometimes.
But he is worth it, SO worth it!