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 –  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

Intensive summer sessions week 2

Another week of pretty full on therapy sessions for Elliot start with a 2 hours session at TSSV, a 11/2 hour session at PTS, another 2 hour session and TSSV then his usual 45 min OT and 30 min SLT session.

Last week was pretty hard on Elliot and he took a lot of persuading to join in his groups and a lot of reminding of what was coming next and how much fun he was going to have.  Luckily this week was much easier for him and he took it a little more in his stride.  His therapists tell me he is always quiet but is willing to speak out more.  We have pretty uneventful sessions this week other than play in the park on Wednesday is cancelled because of the rain seriously in the middle of June in California crazy weather we are having. 

As Elliot is getting used to the groups I decided that we need to increase the social things that we do with him in terms of play dates with friends.  He has quite a few friends that we plays with regularly but is telling me he doesn’t want to play with them.  Rather than press the issue I have kept the stress low due to the therapy sessions but that will be all changing next week as I will start to integrate more into the week and just push him a little bit further and see how we get on.

On another topic we finally have the Elliots report back from the specialist and have all the information we need to start claiming back some of the $6500 we have spent on therapy so far.  This in mind I call the insurance company to see how we go about claiming the money back.  Only to be told that we are not covered through Appsense. WTF…….. we have just paid $600 for this report that Aetna told us we needed to claim back the monies only to be told we can’t claim back a penny.  Surely this can’t be right.  I speak to Simon and he gets on to the insurance broker and we wait patiently whilst he does some research and gives us and update.  Believe me when I say this is not over yet………..

Finally it’s the weekend…..

Before the weekend starts we have another OT & SLT session with Christie and Joyce.  Elliot really enjoys his sessions with Joyce and is continuing to do well with out me staying in the room with him.  As I sit in the waiting room I can hear him screaming and laughing and generally enjoying himself.  The good news is that as the weeks go on it is taking less time before he is warming up to Joyce and really getting into his sessions.  Joyce as ever is really pleased with his progress and gives me a quick update.  It seems that Christie (his SLT) was concerned about the Specialist wanting to put him on Zoloft last week and has mentioned it to Joyce.  She has a quick chat with me and just reaffirms what everyone else has told me.  Whilst Elliot has issues he really doesn’t need to be on Zoloft there are lots of things we can talk about doing before we get to that.  I breath a big sigh of relief and am tempted to hug Joyce but think she may not appreciate it ;o) 

This year is proving to be a really hard journey not just for Elliot but for me too.  I know that Elliots “condition” isn’t life threatening and there are children with much worse forms of Autism that really struggle to function but it is still heart breaking as a parent regardless.  Trying to get him the right help has been hard and invloved a lot of soul searching on my part.  As Elliot is so borderline it is difficult to be sure where to start with him and to be sure that certain characteristics are not being imagined or to wrap bad behaviour up in the “or he can’t help it it’s his condition umbrella” and also to be sure that you are not missing anything and that you can fully see what is happening.  All this considered in a new country with a Health system that is so different with out the support of family and friends can definitely be very over whelming.

The good news is that after the sessions with Christie (SLT) we always feel and know we are doing the right thing as we can both see a huge difference in his speech and his language.  Elliot is always so receptive to her and really opening up.  It really helps that this weeks exercises involved Pixy dust and tootsie rolls (for anyone British reading this sweets)  Elliot thought this was great so much so that when I asked him what he had enjoyed the most in our fun packed day of, going to the park and playing in the sand box and the water sprinklers, then going to Bens birthday party at the splash pool then going for tea at McDonalds he said he enjoyed seeing Christie in the morning the best :o)  You can’t ask for more than that….

The third therapy session of the week

So in addition to the Monday session at TSSV we have a session in the park on Wednesday.  Again the same as the Monday session working on SLT and OT in a group setting helping to encourage the children to socialise and integrate in a group setting.  The session starts in the sand pit and I sit at the edge with Elliot to try and encourage him to join in.  I realise that me being so close is not helping so I move away from the group and let the therapists get on with it, that is after all what we are paying for.  I sit just in view so that Elliot knows where I am but far enough away from the children that I am not interfering.  I watch with interest as the therapists engage the children and keep there cool when they act out.  There are lots of very cool activities such as playing in the sand, climbing on the play structures and an obstacle course, finally the children make pictures from things they have found in the park such as sand leaves flowers. 

Elliot from my observations has been stood on the outside of play reflecting and watching a lot.  He hasn’t joined in as much as I would have liked but I have to accept that Elliot is a very shy little boy and these situations make him feel really uncomfortable.  All of these things can make his anxiety worse.  So I have to be careful to find the happy medium as I need to push him beyond his comfort zone but not to far.  I guess the trick here is to determine how to do that.  The specialist tells me that the anxiety is currently his biggest issue but I am not so sure so I speak with the lead therapists at TSSV and ask for some advice.  I tell her that they are wanting Elliot on Zoloft and ask what she thinks. She also agrees that Zoloft is too extreme for Elliot and that he does start to respond he just takes a long time to warm up.  I have high hopes for this summer as the majority of his therapy is group situations to help him.  Fingers crossed it’s going to help.