Ok so this week is the start of the intensive summer programmes we have Elliot booked into.  As Elliot really struggles with social situations and transitions into something new I am anxious that this week is going to have a really negative effect on him.  I have spent the last week preparing him the best way I know how which is by repeatedly telling him what to expect and when.  As he has never met any of these children before I explain where the classes will be held and who his teacher will be and that he will be meeting new friends to play with.

The first of this weeks session is going to be held at TSSV with 5 other children.  We head there on Monday morning ready to play.  Elliot is a little timid at being left with lots of strangers but I leave him as I know it is the best thing to try and help him cope better as he gets older.  Oliver and I head out of the clinic and come back 1 hour and 45 minutes later so we can go into the group for an update as to what the children have been doing.

Unfortunately Elliot is a little overwhelmed when I get back and he bursts into tears :o(  It seems like they have been doing some really fun activities and there has been an obstacle course and lots of fun activities for the children to do together.  We are given a hand out with 3 stick men on it and they are different levels of excitement.  With each stick man are peoples faces one concerned, one happy one sad..  The picture is to show Elliot how people feel when he is acting different ways.  It is a really simple tool but one I have really managed to use with Elliot to help him get some perspective on how his actions affect other people. I ask Elliott if he has enjoyed himself and tell him that we will get to play with his new friends and Miss Debbie and Miss Perna again on Wednesday but this time in the park.

Ok so after a pretty emotional week for Elliot and I we decided to have a nice fun relaxing day on the beach for Fathers Day.  We meet some friends that are here on a secondment from the UK, Elliot has quickly become close to their Eldest son Ben and I get on really well with his mum Clare.  Who it just so happens is an OT in the UK.  It’s strange how in life people just seem to come along right when you need them.  I am trying really hard not to overact to the fact a Dr wanted to medicate Elliot and it has been really great to use Clare as sounding board to see what she thinks.

Ok so after much deliberating here is what I am thinking.  Elliot doesn’t need Zoloft as he is managing to function daily with out too many issues. We will continue with the social summer programmes which are intensive group therapy in a social situation focusing on SLT & OT 3 times a week then his individual therapy once a week.  Then after 4 weeks we will reduce group therapy to once a week then his individual therapy to twice a week.  We decided not to increase individual therapy right away for 2 reasons.  We thought it would be too much having 5 lots of therapy a week emotionally for Elliot and financially for us.  Especially as the insurance company aren’t looking like they will help out if they can avoid it.  Watch this space……

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…….

Ok so now it is Thursday and I have talked myself around around in circles and really don’t know what to think anymore.  I keep telling myself to wait for the report from the specialist and read it, digest all the information and go from there but I really can’t wait 2 weeks I think we can do more right now.  Just on cue I get a call from SLT and they tell me they are running a special summer programme for 8 weeks focusing on OT & SLT with other children.  I jump at the chance to join another programme as the key piece that Elliot is really struggling with right now is socialising and this would give him a controlled environment to do this in.

Feeling a little better we head to see Ben Elliots new friend from England that he has quickly got very friendly with.  This would normally really excite Elliot but he has been a little cranky and everything seems to be causing melt downs and a lot of stress this week.  In the past we have just written this behaviour off as naughty but today it is clear that he is anxious and he is getting stressed out.  I deal with the panic and help him get ready to leave the house which takes 20 minutes by the time we leave the house both Oliver and Elliot are crying I have to say I was very tempted to join in.

We finally get in the car and I remind Elliot that we are going to see Ben and Clare and baby Alex and we are going to have lots of fun.  He calms down quite a lot by the time we arrive, is pleased to see Ben and goes off to play with him.  He is ok but not himself he keeps getting frustrated and whimpering and making funny noises.  These actions I have started to realise are because he wants something but doesn’t know how to ask for it.  I have stopped the intuition and am asking him to explain himself.  I tell him I realise he has a problem but he really needs to speak to me so I can help him resolve it.  This keeps happening over and over again and I just don’t seem to be able to help him out as he is having a really bad day.  I chat to Clare about it and it is really nice to have another persons perspective and she agrees that he seems anxious and stressed more than usual.  In the heat of the moment I feel the same too.  I guess I am guilty of watching him like a hawk for anxious behaviour since the Dr suggested he is very anxious.  I really don’t want to put him on Zoloft so want to understand how bad the issue is that the specialist has seen.  So continue to observe him.

Later in the day after many melt downs we meet Simon and go for a meal out, which is a disaster.  Elliot continues to be difficult and Oliver joins in for good measure.  We get home and get the kids into bed and I just burst into tears I feel so overwhelmed by Elliot and how best to deal with him that I really don’t know what to do, I feel absolutely cheated and that someone has stolen our happy little boy and left us with a nervous mess.  After a long chat Simon and I decide that we are not going to try Zoloft yet and that there must be something else we can do first.  Just to be sure that we are not missing something that the specialist has seen I decide to ask some advice from his therapists he sees on a friday.

Big day today. Elliot has his session with the child development and behavioral specialist just to get some clarification as to exactly what we are dealing with and that he is on the correct treatment/therapy plan. Although his therapists have told me they think it  is Aspergers they are not  able to make a diagnosis just treat the symptoms/ /issues.  He needs to see a specialist for an “official diagnosis”  Although I am not really up for labeling kids I need to get this done as we are having serious issues with the insurance company and struggling to get any help from them any how that’s a whole other issue.

So currently the sessions we have elliot enrolled in are very child friendly and he doesn’t even realise he is doing anything that is benefitting him.  I very naively assume that this session will be the same.  We go into a room and for the next 90 minutes we are both asked lots and lots of questions.  Interestingly Elliot opens up to the therapist right away and really tries to talk to him and have a conversation.  As this isn’t one of Elliot strong points he soon gets stressed out and this in turn affects his speech.  For the rest of the session I am asked lots of questions and Elliot does a few quick tests to determine muscle development etc which are all fine.  The big issue is that Elliot gets more and more what I think is agitated as the session goes and he starts to exhibit some very strange behaviors.  He is throwing him self on the floor on and off chairs, reverts to baby talk and starts licking himself and me.  All things I haven’t even seen before or have I????  I am pretty confused and to be honest quite tired by the time the session finishes.  The therapists sums up and gives me an action plan to best help Elliot.  Here comes the shocking revelation…………. apparently Elliot is quite a complex little boy and has lots of issues that need addressing but before we get started we need to address the anxiety that the therapist has seen.  He thinks the best course of action is ZOLOFT!!!!!!  Being very naive I just say ok as I don’t know hat Zoloft is.  He suggests I go home and speak to my husband and maybe make an appointment to come back without Elliot to discuss Zoloft.  He feels that a lot of Elliots issues are because he is anxious.  If we help him deal with his anxieties a lot of his “issues” should go away.  It is at this stage that the Dr explains that Elliots constant need to take something with him i.e a car or some kind of toy where ever he goes the lack of flexibility and the tantrums and the melt downs that he has are because he is anxious and doesn’t know how to deal with how he is feeling.  This is also how he feels when it comes to socialising with his friends or trying to socialise.  It all seems to make sense so I carry on listening to everything else he has to say.  He suggests to help him we need to have a stricter schedule and to use picture charts to help him visualise how the week is going to work out.  If things need to change then we can adopt a ticket system.  The system involves warning Elliot that something needs to change and to give him a ticket if he deals with it well then he can trade his ticket in for a reward.  The other things we need to look at are the sensory processing he is struggling with he can’t tolerate anything too hot too cold when eating.  We also think that he is getting over whelmed when in large groups because it is just too loud for him.  For this he suggest we continue with the OT to help him with his motor skills and to help desensitise his surroundings.  He also feels that he is having problems taking perspective which is affecting him integrating with his peers he just doesn’t get the natural inclination that most children get to be able to join in play.  He also has a pretty sever language delay he is struggling to initiate conversations, request what he wants and articulate correctly.  These are all quite large issues to address with his gross and fine motor also needing addressing but not as urgently.

Armed with all this information I feel pretty over whelmed and ask for a little clarification and the DR once again suggests that Elliot really needs to get on top of the Anxiety as at the moment it is over shadowing everything else.  He wants the anxiety controlling.  He thinks Aspergers may come closer to the surface but at this stage he has so many issues that he diagnoses PDD Persuasive development disorder or at least I think that is where we got to.  I kind of switched off when he kept pushing the drugs.  I guess I should go home and do some research and work out what these “drugs” are.

I head home in a daze tell Simon what the Dr has said and look up Zoloft on the internet. WTF!!!!!!!!!!!! Zoloft is an anti depressant wow is that not a little extreme.  I think it is fair to say that whilst I spend the next few days mulling this over I am going to be on an emotionall roller coaster.