As ever we get up early and head to our OT and SLT session at PTS. As Simon is home we don’t need to take Oliver with us to PTS so Elliot is a little reluctant to go in and see Joyce on his own. I tell him that he can have so much more fun with Joyce if I am not there and manage to persuade him to go in alone. Once again I sit in the waiting room and funnily enough wait for the session to finish. I head into the session and Joyce gives me a quick update and tells me he has done well and didn’t ask for me although he was reluctant to go in on his own. She is working with him to help him with the screaming and they have a couple of phrases she is encouraging him to use instead. I mention to her that that Dr thinks he is suffering with Anxiety and check with her to make sure he hasn’t been to anxious during the session, which he hasn’t so that is great.
As ever we head to the SLT session and wait for Christie to join us so Elliot can tell her what he has been doing during the week and during his session with Joyce. We get out picture map for the week and and explain what we have been doing. I tell Christy about Tuesday and the Dr/Specialists recommendation and she is shocked. Great this is the reaction I was hoping for. As a parent it is really hard to comprehend what is best for our children and not to ignore issues they may have. I am fully aware that Elliot has issues and just don’t want to be over seeing anything or on the other hand denying that he has other needs. Elliots chats away to Christy during the session and I have to say his progress is amazing me he is coming on in leaps in bounds. Christy does an exercise with Elliot and I have to say her technique is amazing she manages to make it fun so he doesn’t even realise, that he isn’t just having fun. I get the impression that the exercise they are doing is to check what blends of letters and sounds he is struggling with. Christie finishes the exercise and is quite surprised how well he is doing. She tells me she isn’t quite sure what the exact problem is that Elliot has. When prompted he really can pronounce words and access the words he needs. It appears that his issues are keeping the pace and momentum going. Christie is thinking we need to look at his tongue muscles again. She brings out some funky looking tools to try and liven up Elliots tongue and gives us some exercises to do daily. She also recommends to give him really hard sweets and encourage home to chew them and move them round his mouth with his tongue. In addition to this she gives me a tongue depressor to practice licking it in a certain why to improve his tongue muscles.
As the session is completing she tells me to carry on with the exercises and to continue all the great work because he really is doing fantastically. I think her exact words were “you guys are so awesome” I think all the stress of the week and the relief and realisation that he is improving is too much for me and a burst in to tears. OMG she must think I am terrible we have only been seeing her a few weeks and this is the second time I have cried on her :o( Christie is great and takes Elliot out of the room and lets him pick out some stickers so I can compose myself. She comes back in and tells me not to worry and that Elliot is doing great and that we really don’t need to look at Zoloft yet and that there are lots of avenues we can explore before that. I can’t explain how relieved I was to think that she agreed with me and I wasn’t imagining things.
As a treat for doing so well I suggest to Elliot that we are going to go to the Childrens Discovery Museum in San Jose.. He refuses point blank to go which is really strange as he loves it there. I bribe him and tell him that we can get the train there first as well. Still not interested Hmmmm wonder what is causing that??? Anyway I discuss with Simon and he suggests Olly plays nicely at home so it wouldn’t be an issue to leave him home with him. I tell Elliot that it is just us going on our own and he agrees he will go. How strange fancy having to bribe a 4 year old to go out and have fun. I guess I need to realise he has had a pretty stressful week. School is out we haven’t really got any structure to the week so he will be missing that.
We head to the museum and Elliot doesn’t get very engaged in playing as he did the last time we were there. You can tell that he is going through the motions so that he can go home. Rather than give in and take him home I encourage him a little more to try and enjoy himself. Although it would have been much easier to just go home I battle on and insist we stay out as he really needs to push his boundaries and get used to being out and doing different activities.
It’s been a very long week and very hard week. In all fairness Elliot isn’t the only one finding everything so hard it’s me. It’s so difficult to gain perspective when putting Elliots condition into very simple terms he doesn’t have a life threatening disease for which words can explain how much relief you feel. The relief is some what short lived when you just have one of those days and everything you try to do for him just isn’t working. Whether this day is harder than one where he acts “normally” and you start to think there is nothing wrong with him. You are left in a very dark place questioning your sanity thinking that you are making things up and giving Elliot issues and self diagnosing things that do not exist. I know also in the grand scheme of things that Elliot can functioning relatively normally again something we are really thankful for but some days are just so overwhelming. I think this is only the beginning of this particular roller coaster ride fingers crossed we can get off soon…….