Aspergers – over diagnosed? May not be a syndrome for much longer…

This is an interesting article that I stumbled over this morning – take a look at the link below – suggests that Aspergers is over diagnosed and as a result (in order to pull it all back in) may be removed completely and included within the Autism spectrum once and for all… Interesting…

http://www.thedailybeast.com/articles/2012/02/07/asperger-s-over-diagnosed-ill-defined-may-not-be-a-syndrome-much-longer.html

 

Long time no blogging :o(

As it is quite a while since the last update I thought it was about time that we have a quick catch up.

So much has happened in the last couple of weeks that I really don’t know where to start. ¬†The great news is that I am so happy to be able to say that Elliot has made AMAZING improvements over the summer. ¬†It is fantastic to think that the little boy that we thought we had lost is reappearing. ¬†I really don’t know how to describe the change other than it’s like we had a jigsaw with a few pieces missing, we have found the pieces and the jigsaw is now starting to form a ¬†clear picture. ¬†All the therapy programmes he has been involved in are really starting to pay off. ¬†His speech is hugely improved his confidence is at an all time high and he is finding it easier to speak to adults, his sensory issues have all calmed down. ¬†I.e he can wear his crocs without socks something that only a few weeks ago was a huge issue, he can leave the house without having to have a big routine and run up to leaving. ¬†The daily melt downs have reduced and generally we are using the golden tickets to reward his good behaviour rather than having to use them to help him deal with “difficult”¬†situations. ¬†It still remains that socialising and interacting with his peers is really hard for Elliot but he is getting better at it and with all of his other sensory issues dying down hopefully the interacting with his peers will now become easier.

If anyone is reading this and skeptical that these “therapies” can help,¬†Elliot is definitely a prime example of what a difference early intervention can make. ¬†The difficulty is that it is a combination of things and I guess we have been really lucky in that we found the right plan for Elliot a lot by luck rather than judgement ;o)

To be honest in the back of my mind I am a little panicked, as I want to keep the momentum going and don’t want him to regress. ¬†Especially as we have a big move ahead of us back to England. ¬†I am in the middle of packing up the house and trying to locate what services may be available in the UK. ¬†We are a little undecided as to the best course of action for Elliot when we go home, as I am pretty sure that if Elliot were to be reassessed the diagnosis would be quite different already. ¬†Do we tell the doctors in England and the school about Elliot’s Diagnosis??? ¬†Or do we see if they pick up on anything themselves?? ¬†Even writing this I know the answer and yes we will tell them where we are with him. ¬†I made myself a promise when we started this journey and that was to try not to compare Elliot to other children and that I would help him to be the best he could be “normal” or not. ¬†As it happens with the improvements he has made this summer he is functioning very well and I am sure he would just be seen as a very shy boy with a few quirks. ¬†I guess this remains to be seen…….

GOOD LUCK ELLIOT xxxx

Thanks for all your help…….

….ok so the title is a little misleading as we didn’t really get any help from Appsense.¬† Simon was faithfully promised by his boss that he had his back, maybe to piss up it and tell him it was raining………

Anyway I can’t be too harsh as they have amended his commission plan to help with our cash flow but that is all.¬† I know I should be happy that they have changed that but it was part of Simons salary he was entitled to so basically I am NOT happy.¬† The logical side to¬† me says what did I really expect.¬† I really didn’t expect¬†much¬† I know Appsense are growing and can’t be seen to be making exceptions for Simon.¬† The truth is though that I feel really aggrieved at the way he has been treat this year and saw this as an opportunity for them to put things right.¬† I am not naive and I never expected them to turn round to us and say here is the $6500 you have spent on therapy and we will give you a salary increase to cover Elliots therapy each month.¬† Don’t get me wrong that would have been nice but I am a realist.¬† If they had looked into incorporating PDD in the current policy that would have been great.¬† If they had said to him look you probably wouldn’t get group therapy paid for in the UK but would definitely get OT & SLT,¬†therefore we will¬†give you some money towards it that would have been great.¬† Faith restored and I would happily settle back into living out here and living out the remainder of our contract and possibly staying longer.¬† The fact is they didn’t and I am really fed up.¬† Again it isn’t about the money it really isn’t, it is the principal.¬† Why should we be out here for the benefit of Appsense and be out of pocket every month, relying on our savings to pay for something that would be covered in the UK.¬†

Anyway ranting is not getting me anywhere and if wasn’t for the fact the therapy programme we have Elliot enrolled¬†is doing him so much good I would have our bags pakced and we would be on the next flight home.

PS. Dear Aetna Broker have Appsense opted out of Mental health coverage???????¬† I await your response with baited breath as I may have another trick up my sleeve………….TBC

Final week of intensive therapy…..

Ok so the last post got taken over with a rant about medical insurance which could go on and on but at the sake of boring myself and anyone else I think it is really important to focus on what our money is getting for us. 

This is the last week of intensive session as there are only 3 more of the TSSV sessions left.  The PTS sessions continue for another few weeks and the individual sessions for SLT & OT continue for as long as we keep paying for them ;o) 

OK so Elliot is always going to be  a shy conservative boy that hangs back and assess situations more than other children but he is learning to find his voice and that it is ok to have opinions.  When we started this journey with Elliot, all we hoped for was that we could help equip him and give him the tools to cope with being a quite person and to understand that it is ok to be that way.  Although all of this is way too much information to impart on a four year old the therapy sessions are really improving his confidence in talking to adults, speaking up, trying to correlate more coherent sentences and trying to be heard.  He still stumbles with his peers but is showing a slow and steady improvement.  Just this week I have managed to get him out of the house without as many prompts and even without as many security devices i.e half the toys from his bedroom.  He is doing so much better with change also.  Miss Christie was not available for his Friday session and he saw Miss Maria instead and he totally took it in his stride. 

Yay¬†for Elliot lets hope the improvements in leaps and bounds carry on……

Really no cover for PDD :o( we will see about that…….

This week is the final full week of intensive therapy.¬† I can’t believe how quickly it is going and how the costs are mounting, which reminds me we eventually heard back from the broker to say the we can get a big fat ZERO back from them.¬† It is a little disappointing that it took him over a week to confirm what we had asked him.¬† Anyway no point bitching too much or is there ;o)……….I guess the real frustration here is that health care is completely free in the UK and that a lot not all of Elliots treatment would be covered for free in the UK.¬† I think it is safe to say that it would be unlikely to find as many of the group therapy type sessions that Elliot has¬†in the¬†UK so we had almost decided that we were not going to see the money back for that.¬† But to be told we can’t claim back anything is soooooo wrong.¬†

The next steps I guess are for Simon to speak to his company and see what they can do to help.¬† This kind of puts us all in a very awkward position as we don’t expect any special treatment but do expect to have the same level of health care as would have been provided in the UK.¬† This does not appear to be the case right now.¬† The issue is what can we realistically expect his company to do.¬† We are in the less than favourable position now of Elliot already having a diagnosis which would make getting him insured difficult as it is a pre existing condition.¬† As it is costing us nearly $3000 a month at the moment we are relying heavily on our savings to live on.¬† Granted this is not indefinite but once Elliot goes back to School we will be spending $2000 a month for therapy and school fees.¬† Ok so it is our choice to put him in the school he is going to, however the teaching style here best suits someone with Elliots needs.¬† I guess from our point of view all we can do is flag how much it is costing us to be out here, ask to change his commission plan so we are less out of pocket every month and see what extra help/support the company will offer if any. I really am not holding my breath at the risk of airing our dirty laundry in public Appsense are not the company they once were,¬†they really have not shown Simon the respect¬†or courtesy that an employee that has been with the company as long deserves. Hey that’s just my humble biased opinion but I am sure many would agree with me.

I just want to point out here that this really isn’t about the money it is the principle.

Lets throw in an over night stay and see how this is handled……

This is the third week of intensive therapy and Elliot is continuing to take all we are throwing at him in his stride.¬†¬†He has accepted that he has Sessions on a Monday ,Tuesday, Wednesday and Friday and doesn’t question it anymore i.e I no longer need to bribe him with a target visit to get him to go ;o)

So this week I am adding a play date with some friends of his that he insists don’t like him anymore.¬† I organise it at our house so I can maybe be in a little more control.¬† We have a playdate with a school friend and then another play date with my friend who has 2 older boys.¬† It will be interesting how he copes with all of this and his therapy,¬†oh and we are going to go to Yosemite for the weekend.¬† Doesn’t sound like much but the last time we were away from home he really freaked out and didn’t sleep all night lets see how this week pans out……

Therapy sessions Р great continuing to improve in his group sessions albeit it slower but improvements are there.  Individual sessions he is doing Awesome ;o)

Play date at home with his friends –¬† goes really well the kids don’t play together all the time but they play associatively¬†interact a little and have a giggle together and he tells me at the end they can come again because they are his friends.

Play date with older friends – again he does really well considering he is in someone else’s house and the little boy is a lot more forward than him he manages to tell him he doesn’t want to play what he has suggested, Go Elliot

Play date in the park with school friend – always a little tricky as there is so much space and so much to do so they don’t need to play together but at the end of it he asked the little boys mum if her son could come and play at our house.¬† OMG we are finally making progress :o)

And now for the final piece this week the Yosemite trip.¬†¬†I know what you are thinking after throwing so much at him he can’t possibly cope with that as well…..Ok so we had a few wobbles after 4 hours of driving he asked if we could go home and refused to sleep in a hotel for the night.¬† He soon got over¬† it however and when we had to go home he asked why we couldn’t stay another night.

Well Done Elliot you have had a truly amazing week and continue to surprise me at how well you are adapting :o) xxx