There is no handbook. There is no "right answer." There is no protocol. As I travel this road with a sick and developmentally disabled child, I realize more and more, that NO ONE knows what to do. February marks a year since we knew that Avery has Autism, and two years that we have known of her autoimmune disease. We are still searching for answers, hoping for miracles, longing for discoveries, and wishing for our sweet daughter to come back.... even if just for moments of each day.
In the last two weeks, we have had to make some tough calls. I have never been one for confrontation. I hate to "rock the boat." But as one friend of mine put it, "you are an autism mama now, so you have to stop being so nice." One of Avery's therapists just wasn't working out. I have known her for years, and feel so bad to have to let her go, but there was no connection to Avery, and what was for a time simply not productive, became counter productive, so I decided to make a change. We have already had a visit with the replacement, and I really feel like I made the right choice.
In addition, I had to let our babysitter who has been with us for almost 2 years go. There were multiple reasons for this one, one of which is that I just don't have enough hours in my week to get Avery all that she needs, work, be a breastfeeding mom to Kaylee, and a decent wife. I cut back my hours significantly at work, and am going to focus more on my girls for a bit. They need me right now... maybe even more than we need the paycheck!
More tough calls.
We are coming up on another milestone. Avery will be three years old on March 28th. Bittersweet. This will mark the end of her early intervention services, and the beginning of school district mania. Although she will be eligible to begin services, (PPCD or Preschool Program for Children with Disabilities) on her 3rd birthday, we will likely postpone her start date to the fall. Her current teachers, and the private therapies that we will continue are fantastic, and I am hesitant to move her mid year. We'll see though. I am scheduled to have several meetings, a tour and a big eval with Frisco School District all in the coming month. Yuk.
As for her Mastocytosis, Avery has started even more medications. She still has several dozen "spots" or mast cell tumors all over her body, and now she is also having flushing episodes several times a day. We are fearful of anaphylaxis, so we always have her EPI pen, and her doctors are at a loss. One actually told me this past week, that Avery is a medical mystery. Great. So now she is on six, yes, six different mast cell stabilizers. Poor thing is walking around like a zombie. In addition to her traditional medications, I have started her on more supplements to help boost her immune system. She is on 12 different supplements.
On a positive note, Avery is giving out hugs, kisses and the occasional "five" this week! She continues to drag us around by the hand as her attempt to communicate, and has been as happy and carefree as ever. Kaylee loves to stand all by herself with no hands! She is waving and starting to clap and point a little bit. I am delighted to see her make typical progress, but after seeing Avery have and lose all of these same skills makes me so nervous. I am trying to just enjoy it, but sometimes it's hard.
All we can hope is that we are informed enough, and that the professionals around us are informed enough to help us make the best decisions for our children. I continue to work tirelessly to be knowledgeable about the various challenges we face, and will keep doing my best to make the right "tough calls."