Struggles

I haven't written an update in a while. Not a lot has been going on. I feel like we are in a little bit of a rut. Therapy, MDO, therapy, MDO, therapy... Same thing each week. I think a lot of it has to do with the weather, the cold, just how gloomy & miserable it's been for the most part (we did have a few nice days this week though thank goodness)! I think about Madison's delays/struggles a lot, and here lately I feel like its what I'm thinking about 75 percent of the time. I'm thinking about what she's done in therapy, how I can implement that at home, how much time have we spent doing things to help with her speech/OT/PT issues that day vs just playing or watching a movie, how can I get her to make the sounds she's been struggling with (like her E sounds), and the list goes on and on. More often than not, at the end of the day I'm beating myself up. I should have done this with her today, we should have tried this, am I doing enough to help her, would she be better off in a specialized preschool... It is exhausting. There are a lot of days I feel like I'm on the verge of tears throughout the day. 

I also feel like I put so much pressure on myself to diagnose Madison. Maybe she does just have a communication delay, balance issues & sensory issues and there is no syndrome or underlying factor causing all of it. In my gut though I feel like there is something else going on, that there has got to be a reason she's having all these issues (and I know it could just be that she has this unique genetic abnormality, but that gives us nothing to go on). I feel like a horrible parent because there is a part of me that wants her to have a diagnosis, a label, something that can give us more direction in the best therapies & things to do to help her. Right now I almost feel helpless - we are doing what we can, but is it enough? Are we doing the right things? Are we asking the right questions? Are the doctors running the right tests? 

I think the biggest issue I see right now is Madison's speech / communication. We are in speech therapy twice a week now. We are also probably going to do another evaluation with a different therapist for a second opinion / different perspective. Madi also had an appointment with the Child Development Center at Vandy in April to do some testing. I know you aren't supposed to compare your child to others, but as a mom with a delayed child how can you not? Most kids her age that we are around are talking in sentences & a lot are even having real conversations with you. We are still not getting a lot of 2 words together (except for I want), and definitely no 3+ words together. She hadn't been able to say I love you, thank you, simple words like that & she's not saying a lot of things spontaneously - she still has to imitate a lot (even though she had improved in this). I know how frustrated it makes me, especially when she gets frustrated & lashes out because she can't get out what she wants to. I can't imagine how frustrating it is for her. I just wish so badly I knew what to do to help her. 

Maybe we will get some answers in some of these upcoming appointments. I just want the absolute best for my child, and I'm hopeful that she will catch up & be right up there with the kids her age. There is the possibility though that she will always be behind, and if that's the case we are still going to do what we can to help her. I know she is so smart (she can point to all the letters of the alphabet, she just can't say most of them), I just hate to see her frustrated & unable to tell us what she wants/needs.