Ready to Throw in the Towel

It seems like the last 10 days have just been full of things not going right in regards to Evan and things that he needs. First last Thursday I thought it was reasonable to expect that I would be able to take my almost 3 1/2 year old into the grocery store for 5 minutes while I picked up his prescription. Well I was wrong, first Evan did not want to hold my hand in the parking lot and when I made him hold it he was mad and threw his train across the parking lot, then when we get into the store to the pharmacy he decides that he is still mad and lays himself out on the floor. I talk to the pharmacist and then take Evan over to check our blood pressure, I am not even able to finish mine before he is off and running to another section of the store and just as I grab him the pharmacist tells me that the Rx is ready. Great, I have Evan hold the bag so he can be my helper, and he does okay until we get to the door and then he decides to throw the bag and that he does not want to hold my hand anymore. I finally get him einto the car and I am so mad because I should be able to take him =into the store for less than 5 minutes.

Then we go to church on Sunday and Evan is in this great group called champions which pairs a special needs child with a coach so that they can be included in the typical sunday school classrooms, so there are specific parking places for the champions parents those were all full, all of the handicapp spots were full and half the cars did not have a placard or license plate. So I had to park far away from where I needed to be. I was so tempted to just turn around and leave but I knew that Evan's aide takes the time to be there for him and I wanted to him to be in his class. Plus, I really enjoy the service, it is a nice time for me to be by myself and listen. Well, I was just so frustrated and I was touched by the message so I just lost it when after service I went and picked Evan up and a friend gave me a hug. I was just saying how tired I was of fighting and being the one to take care of everything to get Evan what he needed and how I was tired of being strong and I was ready for someone to take care of me for a change. Anyway, I recovered and we went on with our day.

So then it began again with the whole fight to get authorization for Evan's orthotics. He got casted 5 weeks ago and we are still trying to get insurance and Alta authorization. Our insurance will cover the majority but we have a copay and deductible to meet. The biller at the orthotic place was supposed to bill medi-cal as well but she did not do that until yesterday when I talked to her. She was trying to get an authorization from Alta for the remaining balance but Alta needed denial letters etc. So I had to talk with Alta and billing at Hangar orthotics, they should have been talking to each other but they both dropped the ball on that. It was so ridiculous that I have been the go between and these two have not been communicating with each other. I was so mad at the fact that I had to fight so much for what Evan needs. He needs orthotics to help him walk better and keep him from toe walking. After several phone calls we got things figured out and we are going to get all of the authorizations, insurance coverage and denials that are needed and then Evan will get recasted so that his AFO's will be made from a cast that is current and not 7 weeks old which would be what would happen if we used the casts that are 5 weeks old. So today I went and took care of getting some things that I needed to get done for this process and hopefuly we will get the other needed things so that Evan can get his new pair of AFO's.

It is a known fact within the special needs community or at least among my friends that more often than not the anger and frustration that come from raising a child with special needs do not always come from the child or their disability but having to jump through hoops and fight to get things that your child needs and deserves. I am so happy to have an agency like Alta to help pay or pay completely for things that our insurance does not but I hate having to jump through hoops at times to get their services. I also hate that rarely do people call you back after the first call and that people drop the ball and do not communicate with who they need to communicate with. I almost always have to make calls and double check that things that a dr. ordered etc are being done. His modified barium swallow is the perfect example, I called the Dr. office to see where we were in the process and she claimed that the referral was faxed over after our appt in February, well it was not recieved by Sutter so she faxed it again on 4/1/08 so that is the date we were put on the waiting list. The office would never have known about this problem if I had nto called to check, same with the orthotics, I had to call to see what the hold up was. This is a constant frustration of mine. It is already hard enough to deal with having to quit my job, take my son to 6 therapies a week, countless dr. appts, be in debt and have no extra money at all and actually be short on money, be told that we make too much to qualify for SSI and that my son is not disabled enough to qualify for In home supportive services. It is times like this that I have the irrational thought of just pretending Evan is typical and stopping all therapy and special education, getting a full time job and putting him in regular daycare and saying screw it all. I of course would never do that it would be such a huge diservice to Evan, but I just wish things could be a little easier especially for something that is so important to him such as orthotics.

Well I will get off my venting now and tell you that Evan can say in his own little way the word hot dog, he has been taking a daily nap for about a week and he also has been starting out in his own bed at night. Also, he does this cute little swing of his right arm when he walks, it is so adorable. I hope to video tape it and post it sometime on here. And I will be a new Auntie any day now and I cannot wait to meet my new little niece.