Ok so we are new to America and how things work so what do we do with the information that Elliot has social pragmatic skill issues and a potential speech and language delay.  I say potential as Simon and I don’t really believe he has an issue with his speech.  Whilst we decide we fill out paperwork to get him signed up at the purposeful play program to get started with the social play issues.  Now I am thinking Aspergers I don’t want to wait I want to get Elliot as much help as possible so I decide to speak to the paediatrician and tell them what Paula discovered after observing him and what she recommended.  They gave me the details of a few specialists in the area.

One of which was Paediatric Therapy Services. I have heard really great things about Christine Bacon at PTS so decided to give them a call.  I explained Elliot’s issues and she suggested an OT (Occupational Therapy) and SLT (Speech and Language Therapy) Screening so that they could decide what would be the best plan of action for him.  I discussed with her that we were thinking maybe Aspergers and she said there were lots of children in the bay area like Elliot.  Apparently because there are so many engineers and “techies” here there are more confirmed causes of autism in this area than in the whole of America.  This was nice to know at least we wont be on this journey on our own.

Great news we got in at TSSV (Teach Social Silicon Valley). We start 7th March hopefully Elliot will enjoy the group and get a lot out of it we certainly hope so, as it is $125 per session!!!

Even Better news follows on Friday, all the hard work had paid off with Elliot, after being told that he wouldn’t pass the entrance exam for Mulberry he passed and got into the JK programme,  Well done big guy we are so proud of you.

Elliot has settled well to joining the purposeful play programme he seems to be trying to join in with his peers but needs constant facilitation from the group leader.  At least he is trying to join in which is a start, below are the session notes, the cheers are the bits he has done well with and the challenges are the bits he is finding hard.

Elliot: Session 1

• Cheers: first day with the group. He joined right in and followed along with the imaginative play and structured play. Was a little quiet, but was actively engaged in the group activities. Did not hesitate to act out the story with friends. Was willing to be the leprechaun; did not want to wear the hat – this is fine – many of my little friends don’t like wearing props (sensory thing, new thing, unexpected, etc…) I never force a child to do something he does not want to do – rather I act as though he will do it when he is ready and I always leave the opportunity open for him to change his mind without losing face. Example: “you might want to try later, I will leave it here just in case”
• Challenge: maintaining group peer play

Now we just need to co-ordinate diaries with PTS (Paediatric Therapy Services) and get him assessed so we can see what the experts think

I guess now is a good time to start considering our options for summer programmes.  Mulberry have lots of great summer camps available but will these work for Elliot?  I check in with Bonnie and Paula and ask their advice.  I suspect that they will be very busy and quite chaotic, all things that Elliot really struggles to deal with.  Bonne and Paula confirm this and feel that the environment is not going to be beneficial to Elliot.  OK so this is not a huge but school finishes June 10th and doesn’t start up again until September.  I need to find something to do with Elliot.  Just at this stage in pops an email from TSSV offering an intensive summer programme.  It consists of 2, 2 hour sessions over 4 weeks, sounds great right?……….crunch time it’s $1600 wow wee open that check book again :o)

In the meantime the session notes from his March sessions at TSSV are below:

Elliot:  Session 2

• Cheers: he wore the leprechaun hat today! No problem at all, even wore it over his face for the surprise “guess who” picture. With prompting and choice of 2 able to add to the “fill in the blank” story. He knows the answers, just is quiet and needs time to respond. He does use gestures and communicates with the group – he is aware of what is going on around him. He needs to develop confidence in social interaction, and he is in the right place for that! Shared his Woody Lego with his friends and let his friends try it.
• Challenge: maintaining group peer play, social confidence, using a loud enough voice

Elliot:  Session 3

• Cheers: Was so happy with the snow ball fight – he had fun, did not hesitate to throw the snow balls (wadded up paper), smiled and a little quiet laugh – he really enjoyed himself. Used his body to throw – really got into the play. Able to use the grabber without instruction. Listens to direction, listens to peers, adds comments with his body – becoming more comfortable with the group and using his voice. I do not push for using voice – this just makes the child more anxious, rather I act as though “of course” he will talk when he is ready. If someone says “he is shy” it reinforces to the child that he does not need to talk – I like to say “he will talk when he has something to say” this reframes it to a positive goal rather than a challenge.
• Challenge: maintaining group peer play, speaking to peers

It’s been a few weeks since our meeting with Bonnie, Paula has had the opportunity to come into class and observe Elliot.  So a meeting is set up at school to discuss what Paula observed when she spent the afternoon in class with Elliot.  We had a long meeting discussing what he is like at home versus how he is a school.  Although we have never had any trouble getting Elliot to go to school when he is there he is very quiet and really doesn’t  join in with his peers.  He has been in school since September and should have started to bond with some of the children in his class.  Unfortunately Elliot stands at the edge of where the children are playing and is very interested in what they are doing but is completely unable to join in.  At times he will head to where the other children are playing and play at the side of them but never with them.  All of these things were noted by Paula also and she also asked lots of questions about his Speech and Language.  As he is very reserved at school he rarely speaks and when he does it is very quietly and can be quite mumbled.  Paula deduced that the main issues affecting Elliot are Social Pragmatics and a speech and language delay also .  As Elliot is so vocal at home and Simon and I really don’t struggle to understand him we thought this was nonsense but whole heartedly agreed that he has social issues.  This in mind Paula gave us a few ideas of next steps and what would be best to help Elliot.  She suggested we try out a Purposeful Play Group where children are directed in a play environment and learn how to play together.  An other option would be to contact our school district and insist on a assessment for him.  As we are looking at moving soon we decided to hold off on that idea but would maybe re visit later.

Armed with these thoughts the Autism idea is rearing it’s ugly head again but as Bonnie seemed so sure that he wasn’t I tried to ignore the thoughts.  That was until by complete chance I was introduced to a lady who wanted to know more about Mulberry as she was considering sending her little boy to the school.  She was concerned to know about the school as her son had recently been diagnosed with Aspergers.  We had a long talk about her son and the pennies started to drop it was as if she was talking about Elliot.

So with lots of information from the conversation I decided to start doing my own research.  I know it is dangerous to self diagnose on the internet  but the niggling doubts I had for so long about Elliot all seemed to be coming out.  “aspergers” all I can say is OMG how come we hadn’t considered this before.  Now that we are thinking Aspergers it’s time to start considering our options with all the fabulous resources available in Silicon Valley.

Although all thoughts are turning to Autism we still need to consider our options for school for Elliot next year.  It seems our options are pretty limited.  Due to his performance on the test he had before Christmas it is unlikely he would get into a Junior Kindergarten or Kindergarten programme at Mulberry so we would be restricted to redoing the 4 day programme again.  As we have plans to go back England in 2012 this is just not a viable option for us as Elliot would be so far behind his peers, this coupled with his social issues would make acclimating to school in the UK really tough.  Armed with this determination, to increase his options I decided that I would start doing additional work with Elliot at home and we would do the assessment for JK and K and see how he gets on.

We have just returned from a great trip home to England for Christmas to a little bit of a surprise.  Elliot took some Kindergarten readiness tests in December so we headed into school to get the results.  We met with Teacher Bonnie Elliots 4 day Preschool teacher at Mulberry to discuss what they found.  The tests are designed to determine how well your child is doing and whether they are ready for Kindergarten.  Although we are not completely blind to how Elliot has been doing since we arrived in California I think what we are about to find out is still a little bit of a shock.  Elliot has always been what we have described as very quite and struggles to integrate with his peers, I guess in England he would probably be described as a very shy little boy.  This aside we sit down to discuss the tests with Bonnie, in which many areas of development are assessed.  The expectation at Elliot’s age is to be scoring an average of 7 in all of the various areas.  Anything above this is determined above average and the child is doing really well.  This is where the good news starts and pretty much ends……..Elliot scored well over 7 in lots of areas in some areas 14 and 15 the bad news is that he scored 0 in lots of areas also.  So what could this possibly mean Bonnie seems to think there is some sort of learning difference in play here.  I’m not so sure and here is why………..

Since Elliot was 18 months old he has always had a very high pitched scream, this obviously doesn’t sound like much but this coupled with some other unusual behaviours such as reluctance to change in routines, his reaction to relatively normal situations, difficulty mixing in any large groups, especially his  peers and struggling to express emotions have made me wonder if he is on the Autism Spectrum.  From what little I knew about Autism I felt that Elliot was not severely Autistic but he certainly is exhibiting characteristics from the spectrum.  With this in mind I decided to ask Bonnie the question I didn’t want the answer to.  “Do you think that Elliot is Autistic?”

Bonnie answered with a very firm No but did feel that something else maybe in play and discussed the term “Learning Difference” again.  As Elliot is such a bright little boy I struggled to think how this could be the case.  Bonnie suggested that the next steps would be to enlist the help of the student support worker Paula Ramos to come into class and observe Elliot.  We also needed to start considering our options for next year as the test showed Elliot wasn’t ready for Kindergarten so we would need to make another choice.  Simon and I leave the meeting feeling pretty shell shocked no parent wants to here that their child isn’t the next genius in the making let alone has “issues” they need to overcome.  We certainly have a lot to think about until our next meeting with Bonnie and Paula.  Hopefully Paula will be able to come into class and observe Elliot pretty soon.

Crikey where to start.  Over the past few years there hasn’t been one defining moment but lots of little things that singularly on there own are not a concern,  but when you sit back and analyse them, it highlights something isn’t quite right.  Prior to being 12 possibly 18 months old Elliot appeared to be developing normally nothing to alarming but has always been a little shy.  I guess as children develop they do so much growing and changing in the early years that you maybe don’t always notice changes immediately.  At this stage Elliot’s shyness starts to become more obvious and over time is becoming worse.  He takes longer to warm up in social situations and finds it hard being around anyone even family unless it is someone he spend a lot of time with and is really comfortable with.  Not such a huge issue but he starts to get worse with him really not liking to maintain eye contact and trying to avoid it if he can.  His ability in social situations is worsening it is a struggle to get him to go to play groups and he starts to object more and more.  He develops a very high pitched scream that is really loud and it appears to be more obvious when he is excited and it becomes more frequent.  It starts to get increasingly difficult to get him to leave the house even if it is to do something fun like go to the park.  There are a lot of tears and upset if he doesn’t want to co-operate.   Along the way the shyness worsens and we find that we adapt ourselves to explaining what is happening to Elliot so he knows what to expect next this helps with the reluctance to do different things which throws us off the scent and makes us think that it is just a phase he is going through.

I think it is very fair to say that we get better and better at managing Elliot’s expectations so that any issues he has are pretty well hidden.  A few strange things happen along the way like he is stung by a bee on family day out and he has a really terrible reaction and is completely inconsolable for nearly an hour.  This results in a major paranoia about any flying insect and A few scenarios like this occur where something unexpected happens and he just can’t deal with it and it becomes a really big issue i.e. he falls over and has a tiny graze on his knee, not a big issue for most children but is for Elliot.  Going for injections becomes a big deal also.  As do hair cuts, ears being cleaned, hair washing and finger nail cutting.  Some of these things he becomes more comfortable with and others not so much He gets obsessed with wearing his sunglasses and WILL NOT leave the house with out them.  He also develops fixations. about footwear that cause huge meltdowns if he can’t wear what he wants.  All these little things are starting to add up……