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.

Ok so we didn’t have a great start to the week but Elliot soon got over it and seems to be accepting the idea that school finishes on Friday with a beach party that Oliver can attend.  Before that we make our weekly trip to PTS for our OT and SLT sessions.  Elliot is quickly getting used to going into his OT session with Joyce on his own whilst I wait for him.  I can here him squealing and laughing so I guess he is enjoying himself.  We head into the session for the last 5 minutes for a quick update.  Joyce is really pleased with the progress he is making and is really working hard with him to try and get him to open up a little more.  Armed with the picture he has drawn with Joyce we head to our SLT session.  Again we have another good session with Christie and he is really improving with his conversational skills.  He is still struggling with some words and everything seems to get blended together when he has been talking for a while and the sentences are longer.  Christie does an exercise with him to try and get him to slow down so that he can get his words out more clearly.  It seems to be working so our home work this week will need to be working on this.

Elliot is pretty happy today as he knows that daddy will be home soon.  We head to the beach party and he doesn’t really join in so much with the other children but is more that happy to have Olly there so that he can squirt water at him :o).  The beach party finishes and we say our goodbyes and hope that we will catch up with some of Elliots school friends over the summer.  Infact we have a major break through and he asks if he can have some friends come to play at the house.  Lets hope we can sort out some play dates.

Riding high from the success and improvements at fridays sessions today should be  a breeze right?  Wrong :o(  I have been reminding Elliot that we have a play group this morning and that after that we will go home and head to school.  Just a formality really as he is pretty much used to this routine now, however reminding him generally makes life a little easier as he knows what is coming and there are less surprises.  I gave him a new car prior to going to the purposeful play programme (for being a good boy yesterday) so he is pretty excited to show his friends.  This seems to have helped him break the ice and he has a great last session with his friends, which his teacher comments on and is really pleased about.  Which is reflected by the class notes finally it looks like the social pieces are starting to click for him too, great :o)  (A small niggling doubt is making me think he handles situations better with a prop hmmm will consider this more as time goes on)  Also it looks like the mums of the other boys in the play group are free on fridays so we are going to meet up and have playdates over the summer.  Hopefully this will really help Elliot to play with children who have similar challenges to him.

Elliot: Session 9

• Cheers: shared about his cars from home.  Showed everyone his race car and talked about it.  Followed the group plan and kept with the group – kept his body with the group, less wait time before responding, did not hang back from the group, even though it was a noisy busy day he stayed near his friends and imitated some actions, joined in the fun of the recycle town.  Close to peers when popping bubbles with the “grabbers” had a big smile on his face.

• Challenge: maintaining group peer play, speaking to peers.

We head home and I am getting lunch ready before Elliot goes to school and I remind him that he needs to have lunch then he can go to school and play with his friends.  His eyes fill with tears he puts his hands over his face and breaks down.  OMG what is this for?????  I go to him and give him a big hug and he sits on my knee sobbing.  Through the tears he tells me that he doesn’t want to go to school :o(  In the whole time he has been gong to Mulberry Elliot has only ever refused to go to school twice once with the whole plaster incident a few weeks ago and today.  I am absolutely gob smacked as he gets upset when he is poorly and isn’t able to go to school.  So why the tears now?  I ask Elliot why he doesn’t want to go to school and he tells me that he doesn’t have any friends and that nobody will play with him because they don’t like him.  I can literally feel my heart breaking and swallow down the tears and try to stay strong for Elliot.  I tell him that he is a very quiet little boy and that there isn’t anything wrong with that.  I try and explain to him that when he wants to play with the boys at school he has to talk to them and use his “big loud voice” so that they can hear him.  I tell him that I know it is hard for him and that is ok too and that he will find it easier the more he does it.  For the first time on this journey and I am sure it isn’t going to be the last, I feel totally and utterly out of my depth.  How the hell do you explain to a 4 year old the complexity of social interactions and that for him it just doesn’t come naturally and he needs to work on it and probably always will.  He cheers up with a well timed bribe that if he goes to school I will take him to target and he can pick a new toy.  Total cop out I know but I needed to encourage him to go to school.  I have a quick chat with Bonny his teacher at school and explain the situation.  I know there are only 3 days left of school and there isn’t really anything more she can do to help I just thought she should be aware of the situation just incase he gets upset again.  He lets me leave him at school without a big fuss.

I head home pretty devastated. I am at a loss as to what I can do to help him more than I am already doing.  I guess there are a few things and PTS have already suggested another session during the summer so I get the paperwork out to tackle later (more paperwork :o(…).  I decide that I should maybe be upfront with a few of the moms at school especially the ones I know have signed up for JK next year.  I pull myself back together with a decisive plan of action and head to pick Elliot up from school.  On the way into class I chat with one of the moms and she tells me she has been helping Elliot join in play with another boy and that they had great fun together.  I suggested that we maybe get together over the summer to make an easier transition for both boys into JK. Yey she agrees and says she will message me so we can get together over the summer.   I also talk to another mum/mom and we swap numbers.  Fingers crossed that we manage to get some play dates going and this hopefully will really help.  I am more hopeful for what the summer can bring if we get organised and don’t overload Elliot too much

The rest of the day is pretty uneventful.  We head to bed and we are sat reading stories as he is in an amiable mood, I decide to play a game with him. He is talking to me so I put my hand in front of my face and talk quietly and he can’t hear me.  I also do a few other things like talk quietly without looking at him.  He tells me he can’t hear me and we have a little laugh about it and I tease him that I was using my quiet voice.  I tell him that I  have an idea should I use my big loud mummy voice he thinks this is a good idea and smiles when he can hear me again.  I ask him if he thinks maybe his friends at school just don’t hear him and that he needs to use a big loud voice like mummy when talking to them.  I am hoping to do this exercise with him over the next few days and see if it works for him. Fingers crossed.