Local Primary School

Raphael is getting some early intervention in the local primary school to push his communication and socialisation skills.

So far it is working extremely well. He is really trying hard to use words to talk with people although his lack of distinct sound production ability makes it hard to understand.

It has been a long time since the last post

Q: So what has been happening lately?
A: The regular drudge of appointments of course.

In addition to the occasional doctor appointment, this is what a typical week looks like at the moment:

Monday: Signing with a deaf adult followed by the early intervention playgroup

Tuesday: Speech Pathology

Wednesday: RIDBC (Royal Institute of Deaf and Blind Children) videoconference

Thursday: Teacher of the Deaf - teaching listening skills.

Friday: Childcare in a mainstream childcare centre. We are hoping to give him some real world exposure rather than the world of therapy and "special needs" that he is immersed in for the rest of the time.

Early learning and Australian Hearing

My wife forgot about attending Early learning this morning and they called her asking if she was coming. Scrambling everything together, she was there within fifteen minutes and found that the she was the only person scheduled to attend the session that day. The whole place had been setup just for Raphael. I think that she felt quite guilty about forgetting because of this.

I certainly don't mean this to sound like I am berating my wife for forgetting; but quite the opposite. I mention it becuase this is the first appointment that we have forgotten in the hundreds of appointments that we have had. Annie has been the solely responsible for scheduling appointments with practically no help from me at all and to have only forgotten one, amongst the countless numbers that we have had, I think is amazing.

Well done Annie! I cannot think of a high enough accolade for you, you are priceless.

In the afternoon we went to Australian Hearing to have more accurate hearing tests and new molds made. His left ear is only hearing above 90-100db which places that ear in the profound hearing loss zone. His right ear is much better, being a 45-55db loss (from memory).

Early learning and first aid again today

Today was the second first aid lesson covering burns, bleeding and shock.

Our kids had a fabulous time in the early learning centre and Raphael's teacher commented to us today that she still hasn't hear him cry. I think that I have already mentioned that he is a placid child but I thought that I would provide this evidence to my claim.

He does cry from time-to-time but it is rare for him to decide that there is a good enough reason to dedicate the energy to a vocal cry.

First aid course

This afternoon Annie and I went to the first of four St John's first aid sessions covering resuscitation and Choking. These topics are particularly relevant for us because of Raphael's breathing and swallowing problems.

The course has been subsidised and held at Early Learning, who also provided child care in an adjacent room for our three kids which was fabulous. The kids all had a great time and we didn't have to worry about being too far away from Raphael for too long.

Early learning

My wife took Raphael to Early Learning this morning I believe that the general advice was that the Physiotherapist was happy with Raphael's development but the OT (occupational therapist) thought that he was lagging quite a bit.

The problem with his fine motor skills might be becuase other children his age are picking up small pieces of food with their fingers to eat but of course he doesn't get this experience; he can't even eat mashed potato, let alone a whole sultana. So we are going through our toys looking for things with small things to grab hold of. Of course we can't just give him tiny things because of the risk that he might put them in his mouth and choke on them. The only thing that I can think of at the moment is baby puzzles that have the little knobs on the pieces to pick them up by.

My wife believes that Raphael has made attempts at verbalising a few words:
All done: "Ada"
Zài jiàn (Chinese for goodbye): "Dyadya"
Gěi: (Chinese for give): Ge

She claims that the evidence is that:

• the sound is approximately correct
• he has said these things more than once; and
• he says them in conjunction with sign language (or action in the case of give)
  

I think that Annie is still being a bit optimistic about this being speech. I suspect that this might turn out to be another "head scratching incident" as he has not signed mummy in a very long time. But regardless of this we will use his sounds back to him (and with the correct pronunciation) to reinforce this behavior and with any luck he will learn that he has actually said an understandable word and not just a coincidental grunt.

Early learning - hearing consultation

This morning we had a consultation form a hearing specialist at early learning.

We talked about a general plan to help Raphael develop his hearing skills and came away from the session with a few things to do:

• Speak in sentences but emphasizing the key word to him, trying to include it in a sentence fifteen times if possible.
• Start communication with Raphael by vocalising before adding sign language. The idea is not to deprive Raphael from understanding by sign language, but rather to encourage him to use his hearing for communication as well as his vision.
  
• Continue to repeat back vocalisations to Raphael
  

Early Learning session today

Annie took Raphael to an Early learning session today and was pleased to note that Raphael was finally able to drop objects into a box. I am sure that more was achieved during the session but I was not present so I cannot give a full account.

Four appointments today

The four appointments today were: Gymbaroo, Australian Hearing, Let's Sign and a meeting with Raphael's future primary school principal.

I have talked about Gymbaroo before so I won't elaborate further here.

At today's Australian Hearing appointment, Raphael had another functional hearing test. He was seated on his mother's lap and sounds were played through speakers to his left or right and if he responded by turning towards the sound then he was rewarded with either a puppet in a window or a toy elephant drumming on the other side. The results of the test were the same as previous tests with regards to what volume and pitch he could hear. Ear moulds were then taken of his ears canals for the purposes of fitting hearing aids. He wasn't very keen on having his ears filled up with putty; but I have become quite adept at holding his head still.

Today was the last day of the 4 week Let's Sign course. I am a little disappointed that it is finished but I am very grateful to the teacher who went to the trouble of preparing extra signs just for me and giving me one-on-one help with the signs.

After the Let's Sign course we met up with the state coordinator of ELT (Early Learning Tasmania) and the principal of our local primary school to discuss Raphael and his older siblings in the schools. They are extremely supportive and have seem to have fabulous resources to help educate disabled kids and their families. I felt tears of gratitude well in my eyes when they told me what they thought they would be able to do for Raphael and his older siblings.

appointment day

Today was a busy day. This is my (Paul's) day off but Annie had to take the morning off aswell because of the number of appointments that we had lined up. Today we had:

1. Consultation with PEG nurse,
2. Gymbaroo (gross motor development for Raphael),
3. Consultation with ENT,
4. "Let's sign" sign language course, and
5. Tonight Raphael's Early learning teacher will come to our house to discuss a learning plan for Raphael.