Sunday, November 6, 2011

When they take a few steps back

For the last few months well most of this year, Josiah has been doing really well steadily making progress. Since my hospital stay or when we are not really sure but he has stopped speaking to significant adults that previously were part of his talking circle. He is still talking to his friends at school which is great but still it is concerning that he has gone a little backwards. Who knows what the cause is, but trying not to worry about it and just let things be, continually encouraging him in the same way we always do. The main change that has happened is that he has stopped soccer as the season ended, I have been thinking of ways we can replace this activity with something else as it does seem to help him. Very soon (in less than 5 days) I will be heading in to hospital to have my third baby, what is fortunate it is all completely planned being an elective (stupid word) caesarian we can organise everything so that there is stability and fun for Josiah when this little baby makes an entrance.

So the last few weeks and maybe months have been spent booking appointments ahead of time for therapy and what not and organizing his schedule, so that everything is taken care of. I have managed to do up a new morning and evening routine that includes his therapy and school activities and I been enjoying the use of boardmaker to do this. This is one thing that we desperately need we are in the process of getting a grant to buy this program I know I could continually use it over and over again.

The main motivator for all this work is to help Josiah and some of his behavioural issues. This week has been better but we have been dealing with some major behavioural and anxiety issues. To the point we spend 2 hours just getting dressed, the anxiety in going out to the shops, to school and to church has all increased. He has been retreated to his turtle like status, where he will hide or crawl up into a ball. The challenging part is to remain patient and understanding, some days are better than others. It reminds me to get back to basics so out come the timer and we used that again mainly for us to stop pestering the poor child and give him some space while he deals with what is going on. We did discover that he does struggle with another child and he worries that this person is going to bully him and he is simply unable to ask for help, this was heartbreaking to hear. This accompanied with another slip up when I got sick and Josiah ended up at school without a water bottle he went through the whole day without asking for help. I would guarantee if he could he would have asked but he just couldn't. It does break your heart.

Along with the issues with progress at the moment we finally got our Assessment of Josiah's speech back and it is unfortunate that now he has slipped backwards into the category of Severely Disordered Expressive and Receptive Speech Delay, which is as bad as it gets. The positive part is that the parts he scored the best in relate to understanding and receiving instructions which will be of benefit for his schooling and just about everywhere. In dealing with this I did feel more grief (in comes in cycles) mainly because I wonder and fear how long this will take for him to improve and what effects this will have on his learning, his social development and also his schooling. I am faced with the need to once again fight for more therapy for Josiah so that he can get the help he needs because at the moment it isn't enough for him to actually get anywhere. So going to get out my letter writing skills and write some letter so government people to get some action as I am sure that we are not the only ones in our situation.

Next I will post the routines and what not we (maybe I) have done up for Josiah they look fantastic feeling happy about what I have achieved.