Epic Fail

Ugh, epic mom fail today.

So we signed up for the Talk Tools clinical trial at the conference in July.  Then we found a volunteer therapist (because Emma is not currently getting speech therapy we couldn't just use her existing therapist) and we were all set.  I forget when we did the first baseline session, but it was around sept/oct.

The clinicians had so many problems and delays that they could not work out the therapist had to quit at the end of November.

I was gutted, and mad!  We want to do the trial to help get this therapy approved for all therapists to use, and so we can get it for Emma.

Anyway, I approached her previous therapist from early intervention 3-5yo, and she agreed.  I couldn't believe it.  We scheduled to start in January, giving the team plenty of time to get stuff fixed.  And she has much more flexibility and seems into the whole discovery thing.

In the meantime I already moved back X-rays for Emma to have a palate expander from September to March - which is now cutting it really close because it's a 3 month trial!

We started a week ago.  We did the first video session and submitted it.  There were some things the therapist didn't do quite right, so we had to repeat it.  

We did two, on the following two days - leaving one to go.  Then she got an email from a guy who helped design the study telling us there was a problem with how we did the other two and we would have to start again.

So on Friday we did a fourth session, with two more to go.  Both me and the therapist were pretty frustrated and Emma was getting fed up having this camera in her face and having to do the same things over.

Today the therapist came to do session "2" (really 5!) and we got started.  Right at the start em made a mistake and said an answer, when she was supposed to just read the question.

I stopped the camera and said (nonchalantly) that we need to start again.  Well, Em burst into tears and ran over to me.  She was inconsolable for over 10 minutes.

I felt so bad.  We went up to her room and I let her know many times that she was not in trouble, she did nothing wrong and if she wanted to stop we would, no problem.  She said she didn't want to do the video.  She actually asked if she could get right to the therapy!

I was so worried she was done completely, bc we are only doing this for her.  Scott went in and "let her know we all love her very much, and when the difficult part is over we'll go out for dinner to her favorite diner!"  That saved the day and she's agreed to do the other two video sessions!  

It's so hard to remember that this stuff can be weird for kids, especially when they are as agreeable and capable as Emma.  I tend to assume she gets it as well as I do, but she's only little.

Time to remember she's my baby, not a project to be carried out.   Probably one of the toughest parts about being a special needs mom.