Oh Dear

What a terrible blogger I am!! Not that anybody really cares and reads this. LOL!

Anyway, I am updating the list of words that Will knows. When we went to the Speechie at the end of January, he basically had about 5 -10 words. And these werent used regularly. But now, we have so many, and these are increasing everyday. I dont know if has been the speech or whether it was the time was right and he was about to speak. Maybe a combination of the two.

Here are the words: )in no particular order)

mumma, dadda, book, cool, alright, dog, cat, tiger, ga ga (our dog), drink, gurt (yoghurt), fruit, car, shoes, truck, two, book, please, ta, look, there, here, where, Keely, Tarlay, Brooke, Troy, Nin (Lynne), Anen (Aden), Nins (Neve), Poppy, chair, keys, ball, up, down, bye bye, ta ta, hello. Jude (his baby sitter Judy), moo, chew chew (train), towel, bowl, shower, bikky, ekky (brekky), ninna (dinner), ears, head, gone, dida (spider), tacta (tractor), Reuban, blue, red, more, Nat, shish (fish), poo, push, Paula, Coco (Paula's dog).

I am sure there are more, but we cant think of them!

Everything is going well. Still working on eating, but we will get there. We are trying different ideas and hoping that Will picks up on them soon enough, otherwise he is going to be hungry little boy lol.

Havent heard back from the doctors and we are very pissed at that. They are giving us the runaround. Bloody hell, tell us the truth. I am getting Adam to ring tomorrow and let him give them a piece of his mind. Quite forceful when he wants to! Especially helps out if we want another baby and there is something that we need to be aware of.

Signing off now!!

Been a while

Now, it has been awhile. Nothing much to report. Will is progressing really well, coming out with more words - our favourite at the moment is pwease. So cute, we make Will say it all the time. He can identify trucks and says something like it.

We still havent got the results back from the blood tests - but I spoke to the lady at the surgery and she is going to chase it up. I am hoping it still means no news is good news. Wills dribbling has decreased, it hasnt stopped but it is much less. We go back to the feeding clinic next week without much progress although I have to admit we havent been working on it too much. I will get stuck into it and see what can happen!

Will is going well at school, using more words and signs. He plays well with a couple of the kids there and is being shadowed less. We have to apply for more funding - even though his progress has been wonderful it hasnt completely changed and if he has a further block of support it just may be all that he needs to be ok at school.

I hope that he is able to be socially ok - my big fear is that during these years is that he becomes an outcast because of his biting. I hate being on eggshells when we are in a social situation as I am constantly shadowing him. I dont think others get it, and I dont think that other parents are aware of the anxiety that is we all are going through. This isnt deliberate actions of a bully but rather a behaviour that we are trying to 'delete' through increasing speech, social function at school and eating. But anyways.....

A few more

Tacta - tractor
Keewee - Keely (his carer at school)
Hi
Bye
Ta ta
Two

He is getting there isnt he!!!

More Words

We can add spider, shower, dinner, down, icky (bickie) , ecky (brecky) and all gone to our vocab. Will doesnt have speech for a month as our ST is on holidays, so we have some homework to do. For some reason he deletes the on set and says the rime. So we have activities for him to do that will encourage him to develop the skills for the onset.

It is great to see him voluntarily use the sign language and the fact that he uses them in situations not just with me. He will use them with family and at care which is great and it enables them to communicate positively with him.

Will is a bit grumpy at the moment, bit of a sick bear, I am certain he is getting the last two molars. And so am I, not happy considering it is the school holidays:(

I am so happy with Will's progress since we have started therapy and having seen how much he has come along. It certainly has made a change in him, dont know about the biting, I think it could be linked more to his low muscle tone and need for development rather than a communication frustration link. We will see, but all is going well at the moment:)

Update

Long time no post, quite a bit to write so brace yourselves lol!

After seeing the speechie we went to the feeding clinic. They said Will was a complex little character as he has some skills and not others. Most children who have eating habits like Will cant chew properly and have a linked bodily reaction, or have a psychological issue - chocking. Will chews like a regular child should - except he refuses to eat things that would increase the muscle tone in his face.

Outcomes: we have to practice lots of lip exercises. This will increase the tone in his face and stop the constant dribbling. The dribbling occurs as his lips are strong enought to curl up like ours do. We all produce that quantity of saliva, we swallow, Will dribbles:(

* Make vegetables in cuts (like Julienne) as well as meats so that he can eat them like the finger food that he eats

*continue with the muesli bar thingies that he eats as they are good for the muscle production

*offer continuously and hope he gerrys that he needs to eat it

*miss out on foods if he doesnt eat. He isnt going to starve and they think that he also chooses not to eat rather than cant eat as he shows the skills of an eater

We are practising the lips, kissing with mouth closed. Tomorrow we are going to try the 100s and 1000s. These are spread on the table and Will has to pick them up with his lips - not open mouth or tongue. What a mess - we are going to be doing this outside!!!!

They seem very positive about Will and what he can do, and hopefully by the time his next appointment comes around in a month, he will have improved. He ate a meat pie at the Easter Show - can you believe it. Paula broke it into small pieces and he wanted it!!!

Other than that, we are looking into his headbanging. When he chucks a tantrum - frequently but only very short, he headbangs the floor, or door, or wall etc. I have found some research to suggest a preservative found in foods. Am going to investigate it some as well as my cupboard and fridge to see what we have and what could be contributing to this. It has only just started in the past month or so and only occurs if he is frustrated or angry. It usually stops the tantrum as he hurts himself, so it is quite horrible and we want to stop it. Have been looking at Sue Dengates website for reference.

On the speech front - he has said cat, park, sees (trees) lately and is really good at signing 'in' and 'help'. The help one we use when he grunts/screams in frustration. I say 'help' and he signs back to me and we figure out what to do next. It has been working well this past weekend.

Speechie on tuesday. More feedback then:)

Easter

We have had a very big weekend. Friday we were at Brooke and Troys, Saturday was the beach and baseball, Sunday was Adams family easter and Monday was my family easter. I dont think that Will ate anything but chocolate much to my misery and everyone elses pleasure:)

So, today, with all the toxins in his system he was a nutter at Speech Therapy. He couldnt concentrate, going from one activity to another and really not participating in the activities at all. But he is still progressing quite well. We are working on the signs for 'in', 'open', 'close' and 'help'. It all seems to be falling into place!

Thursday we have our appointment with the Feeding Clinic to see what they can do about his lack of eating 'solid' foods. Will really only eats soft foods, he is quite adept to looking at offered foods, sizing them up, and saying no to them. If they require chewing, then thats a no no. I will be back to see what they say later.

Poo!

Oh dear, we can add Poo to our words!!!!!

I can be sitting on the toilet and Will will come in and say very loudly POO! Or point to his nappy and say POO or blow off and say POO!!!!

Also, Will has finally got the concept of Ta. He readily used it when he gave things to Adam and I but he didnt say it when he wanted or got something. Now he does. It is so good and most times he does it without prompting. So he understands conventions of language.

The downside is, is that he stands at the pantry door and says ta, ta, ta and it gets progressively louder until something happens. Which is generally me redirecting him, not giving him food LOL.

The sign he had to work on was the sign for go as in Ready Set Go, but he still hasnt grasped it. We are also working on the sign for in and he seems to be getting this one easier.

So we are still making progress at a rate which is fantastic. Using a phonetic program from school Ants in the Apple, Will is making sounds. I sing Ants in the Apple A A A, and he responds A A A. We are looking at the letter A, P, S as he seems to have an understanding of the sounds. A bit of n, h, g thrown in for good measure.

I went to the GP to get a idea about what the paed was looking for in the genetic testing - FSH and it is autonomal dominant - basically Adam or I have to have it for Will to have it. And it appears we dont, so if Will has it, it will be a genetic mutation that can occur. So we remain positive that it is an isolated speech delay, mixed in with his low muscle tone and lack of eating.

And we got the approval for Will to have support at care. It means five hours a day for 10 weeks and hopefully his biting will have decreased as his understandings of the world have increased and his self esteem and confidence relating to communication moreso. Lets see!