Today is our first OT and SLT session, at this stage I need to attend with Elliot and just sit and watch and try not to speak or interject.  Those of you who know me well will know that this is pretty hard as I love talking :o)  With Elliot’s best interests at heart I have to curb my desire to talk and ask lots of questions, I force myself to sit quietly.  We arrive early and sign in.  I have been spending the last few days discussing with Elliot that we were going to play with Miss Caroline (OT) in the gym and then Miss Christie (SLT) in her room with her Buzz Lightyear toys.  The therapists have recommend to keep the sessions light and not really make a big deal about the fact he is having therapy.  So instead we just say that we are going to play with the cool toys that they have.  Which is not a lie.  Elliot has his OT session in a gym that has various different types of swings, trampolines, balance boards, climbing walls, ladders, soft blocks and lots of different obstacles to challenge they kids with gross motor issues and lots of toys also to help with fine motor problems.  Anyway here lies a big whoops I hadn’t realised that we would not be seeing Caroline the therapist that did the assessment.  On arriving we find out that we are seeing someone else Miss Joyce.  Usually changes like this can really throw Elliot off.  I have a quick chat with Elliot to reassure him that this was totally fine and that I was sure we would have even more fun than we did with Caroline, fingers crossed.

The OT session starts and Joyce the new therapist introduces her self to Elliot.  Elliot is very reserved and takes a long time to move away from my side.  He speaks very quietly when spoken to and avoids eye contact completely and is really mumbling so much so Joyce really struggles to get anything out of him.  He starts to warm up a little to Joyce but is using mainly one word answers and trying his best to communicate without words.  Joyce does really well to get him to speak to her but still he is very “shy”.  She tries to get Elliot to use his “loud voice” something we have been encouraging him to do to speak a little louder,  with mixed results.  The session continues and Joyce encourages Elliot to do exercises that involve a lot of movement.  One of his favourite exercises were with the flip flop faces and bean bags.  He had lots of coloured cups that he had to throw bean bags into to turn the cups round whilst being pushed on a swing.  By the end of the session he was doing a lot better at responding to Joyce.

Next he heads in to the SLT with Christie, we wait for 5 minutes to be informed by the receptionist that Christie is unlikely to make it.  Elliot gets upset and bursts into tears I guess 2 unexpected events in one morning are a little hard to deal with.  The receptionist tells us that we are welcome to wait and we should be able to get  15 minute session with Christie she just wont be in time for the 30 minute session we had booked.  We decide to wait as Elliot was pretty upset.  Christie turns up and we start the session.  The SLT sessions are a little hard to get used to as we are just sat playing with toys answering questions and generally chit chatting.  I kind of struggle with this a little as I am thinking we are paying a lot of money to sit around chatting.  It soon becomes evident towards the end of the session that the questions re being asked for a reason and that Christie is already highlighting possible issues with Elliot.  When he talks he is blending words together and struggling to get out full sentences.  Things I had not realised until it was pointed out.  As we only have a short session Christie asks me to do a few exercises with Elliot and try to determine if he can pronounce each letter of the alphabet and if he can pronounce the phonetic equivalent.  We don’t think that these are particular issues, we think it is more of the phonetics when letters are blended together.  Christie asks him to do a few tongue exercises and feels that his speach issues maybe related to his tongue muscles not being developed properly this we will discover over the coming sessions.

Elliot is still going to his TSSV sessions on a Monday morning without any complaint.  He has attended 6 sessions now and I am not sure whether we are making a huge amount of progress yet.  I am feeling pretty guilty as we get lots of follow up work to do outside of school and I don’t always get a chance to do it all.  His session notes don’t seem to be changing much maybe this  this week I get around to doing more.

Elliot: Session 6

• Cheers: participated with encouragement, imitated peer ideas.  Loved the marble run! Really participated with the marble run and helped figure out the problem and fix it.
• Challenge: maintaining group peer play, speaking to peers.

Firstly I think we need to get a recommendation for a good mental health professional in the area.  I have heard of Damien Korb and I am thinking he might be a good place to start.  I check in with the PTS therapists and they highly recommend him.  So here starts my next mission to get an appointment slot.  I contact the centre for developing minds who take our details and mail out an information pack.  The paperwork arrives a few days later and I am greeted by what seems to be pretty standard statements referencing payments.  These companies will NOT deal with insurance companies and you MUST pay for their services directly.  This is not giving me  a warm feeling about getting any help towards any of this treatment for Elliot.  Up until now the sessions have been costing around $150 but this one is really going to hike up the tally @ $600.  Hope this guy is worth it.  With all these escalating costs and no sign of help from the insurance company we will soon need to ask a very serious question of our selves.  “Can we afford to live here?”  We have a couple of avenues to explore before we get there but these are very real questions when the few sessions we have been to and have organised are totalling nearly $5000.  Fingers crossed we find a way around the blocks the insurance company are putting up.  I have a strange feeling that the old insurance company would have covered Elliot but AppSense changed providers this year.  I need to see if I can find out.  Hmmm…….another project .

We had a great trip to England and Elliot seems to have coped pretty well with a change in environment and has only had a few “episodes” We are back from the UK and ready to get back to a routine and get on with our plan for Elliot.  We haven’t heard back from PTS yet so I guess I will need to chase this up.  This really seems the American way, Californians are so laid back.  At times it can be a little frustrating especially when you just want results and answers.

After a break of 3 weeks we head back to TSSV with Elliot.  I am curious to find out how he will react as he hasn’t been for some time.  I spend time to explain to him that we are going to play with our friends Hayden, Derek and Sameer.  He was quite happy to do this especially as we were taking Grandma with us.  As we had been away for 3 weeks Miss Debbie asked us to bring some photographs of our time in England.  We didn’t get chance to print anything off so decided to take the ipad with us.  Elliot really enjoyed showing his friend the photos and continued to have a great session with his friends. He had a little upset at the end of the session when the play didn’t turn out they way he expected.  He soon got over this with some encouragement from Miss Debbie to use his flexible brain see session notes below.

Elliot: Session 5

• Cheers: so happy to show pictures of his trip – he explained who everyone was and what people were doing He used a big voice and full sentences to explain what was happening.
• Very engaged with his friends today – popped up out of the box; big smiles! Jumped for the popcorn song; made his box into a racecar – drew wheels and a steering wheel. Referenced his friends (used eye gaze for purpose)
• Challenge: maintaining group peer play, speaking to peers. Was upset at the end of the session when the boys hid in boxes to surprise their parents. Someone else had hidden in “his” box and he did not want to hide in a different box – but I encouraged him to hide behind it with me. He did cry a little when all the children were popping up so their parents could find them. I think he was upset because he was in a different box, but I commented that I was so proud of him for using his flexible brain and trying a different box. He got over the sadness very quickly.

Finally I get hold of PTS and discuss what we do next.  They suggest getting a further diagnosis to satisfy the insurance company so that we can hopefully get some money towards the treatment for Elliot.  The insurance company is not helping and we are told to reference a clinical policy bulletin board that doesn’t appear to cover much.  When I speak to insurance company again they are asking for a CPT code for his condition that requires the therapy.  As we haven’t officially had a diagnosis from a mental health professional it looks like this will be the next step.

After lots of tooing and froing with appointment slots and availability of 2 therapists we manage to get Elliot a slot to have a dual screening for OT and SLT at the beginning of April right before our trip back to the UK.  We are given a huge amount of information to read through and consent forms to agree to pay for treatment up front as the therapists do not work with the insurance companies.  The therapy is going to cost just short of $35 for each 15 minute interval I hope that the insurance company will fund it or some of it.

So the big day arrives for Elliots screening I have spent the last few days telling Elliot that we are going to meet some new poeple and see what fun toys they have and what fun games we may be able to play with them.  We set off for the screening and I try to stay up beat for Elliot as I don’t want him to be concerned.  Deep down I am concerned that our fears are going to be recognised and we can’t pretend there isn’t anything wrong with him other than him being a little quirky and shy.  Fingers crossed here we go…..

The session starts with the OT.  Elliot is very quiet and really doesn’t want to answer any questions, he is struggling to make eye contact with the therapist and generally feeling pretty uncomfortable.  He is asked a few questions and really struggles to answer.  My hopes that he is just a shy boy are fading fast as you can see the discomfort he is in just being asked a few pretty standard questions.  The therapist continues and tries to engage play with him which is pretty hard.  I am asked a few questions about Elliot in general about his gross and fine motor skills.  I thought he was developing normally and was just a bit clumsy, maybe there is a little more to this.  So I ask the therapist a question that i am pretty sure of the answer to….”Is Elliot just exhibiting behaviour that a very shy child does and are his delays related to his shyness?” I hopefully wait for the answer of “Yes” but know deep down what is coming.  I am told that there is something a little more complex at play here.  Big sigh…….After a few more questions for me and some exercises with Elliot we are given some profiles to complete for Elliot to give the therapists a better ide of Elliot and how he is functioning.  We are then taken to another room for SL screening.  We are greeted by a lovely, warm and friendly lady.  I have spoken to her many times on the phone, lining up the appointment for Elliot and discussing with her why I felt Elliot needed assessing.  I am completely at ease because she is going to tell me that I am of course correct,  Elliot’s speech is absolutely age appropriate and that the school just don’t hear him talk too much and have over reacted a little.  The therapist is asking Elliot questions and is struggling to understand him.  I am struggling not to answer for him as I fully understand him.  The therapist realises that I understand him completely and asks more questions and does more exercises.   The pennies slowly start to drop, he does indeed have a speech and language issue. As the session draws to an end Elliot is relatively unaware of what is happening.  The sessions are conducted in a playful environment so the children are most comfortable.  I decide to bite the bullet and ask the therapist “The question”.  Is Elliot’s condition Aspergers syndrome?  She nods and I struggle to fight back the tears although it has been in the back of my mind for so long there is always part of you that hopes that you are imagining it and that he is just painfully shy.  Oddly enough the therapist also had tears in her eyes I guess this and my gut instinct is why I like this place everyone seems to really want to help.

Ok so now we have an idea what we are dealing with and have some codes for the therapy Elliot needs it is time to get on to the insurance company.  PTS surprisingly enough are really expensive.  As we are going to need 2 lots of therapy a week between 30-45 mins, each 15mins cost nearly $35  the bills are soon going to mount up.  Armed with the information from PTS and a idea of the dialogue I need to use this going to be easy right?  Wrong!!!! I ring the insurance company and they tell me we are not covered by the codes for the therapy.  Ok so what do we do now?  We are due to fly to England in a few days for Easter so I guess we need to have a think about our options and find out what to do next

Not a lot to report re the TSSV sessions as we are in the UK for most April.  Here is the update for the session at the beginning of April.

Elliot: (Will be gone April 11, 18, 25) Session 4

• Cheers: very engaged with balls and hoop game – needed some prompting to pick up the 2 balls and stay in line next to friends – prefers to keep a distance from his peers – watches the group, needs confidence to join in. Once he watches for a while, he joins with a prompt. He needs to watch first, then do the activity. Big smiles when throwing the balls through the hoop. With prompt, told friends about his upcoming trip to the UK, and visit Grandma and “blow out candles” for her birthday. Also told about his 2 “Cars” cars and showed his friends.
• Challenge: maintaining group peer play, speaking to peers

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