They're back

Got the call from my son this morning that Cully had some hard seizures this morning.  Julie told me later that there was only a couple in each cluster. A call to the neurologist was made and we were instructed to let them know if we see an increase.

We have our hands full here. We now have a Cully that is just completely unhappy in every way. It's non stop whining or crying all the time. He does not know what he wants and one moment he wants to be held and then he does not want to be touched.  This is what we were told to expect.

I am not sure how to work with his social or autistic issues with him like this. Do we let this go for the duration of the ACTH or not?  Is it even possible? Just five minutes of Cully like this will wear anyone down and I do not know that either Julie or I could manage working on many tasks with him.

Nothing has really been mentioned on this blog about Cully's autism and most of the time nobody has seen anything more of his actions other than his non stop running and activity. Stick around and spend time with him and this is what you will see. ......When frustrated with being told no or trying to play a video on the Ipad Cully will start hitting himself in the head with both hands and yell no! Another action he has been doing more of is pulling his hair with both hands. And it's becoming much more frequent too. When he has any sign of a hang nail or a piece of loose skin on his fingers he has to have it taken care of immediately. He will continue to tell us "owie" and hang on us to fix it right away.  If he has a runny nose or should get a little buger on his finger he will completely FREAK OUT and keep saying "EWE EWE".  It's the degree of how he acts about this that makes this an issue and the only way to resolve it is not for him to wipe it off his finger but rather he has to give it to mum or I. There has to be a transfer to someone to make it go away.

There is no doubt that Cully is going to have several issues to live with but I want to grab some control of as many as I can as early as I can and nix them before they are set in his ways. Like the hair pulling and hitting. If I can get that to stop then I would have to imagine that as a young man or adult he may be able to live a much more mainstream? life. I hate using the term "normal".

I am seeing that it may not be possible to continue working for the moment when we are having so many issues in the home. I can not afford not to work but at the same time I can not see how Julie can deal with this on her own and there is really no other options. For the time I am hanging on to see if we see improvements on the home front but if I see missed chances to improve Cully's future then I will certainly be stepping away from my employment for a while.