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!

Day care

A nice byproduct - or so we think - of Wills lack of speech is his biting. We have had many instances of biting and a terrible experience at our previous child care centre. This new however is just brilliant. They were aware of his biting prior to enrolment and have engaged the services of special education support. My gosh, she was excellent. The hardest part at the moment for the staff and for Will is, his bites can be varies. They can be observed as frustration, as interactions, and as affection (like kissing).

So we are working on re-direction if we think he is going in for the kill, making him less reliant on touch (hard for a tactile boy) but making him wave hello, goodbye etc without touching the other kids, visual cues, special Will books etc.

At this stage, they are working on the development of the plan, it has to go through both the care centre and Adam and I. It it all negotiable with all of us, we are consulted all the way through the process.

So, progress is being made. It is making me feel very confident that Will is being supported in a positive light and that we can make steps to being bite free as well as increasing his speech development.

People who havent seen him lately, or dont see him as regularly are amazed at his progress, we dont see it as much as we are with him all the time. So again, things must be heading in the right direction!!

Blood Test

Will had to go for his blood test today. Our paed recommended we go to the local hospital as they bulk billed and if we had of gone privately it would have cost money. Fair enough. So I took Will this morning to our local hospital - which is a large Sydney hospital, where the Pathology section was full of people. Urggh! I hate waiting and even more so with a two year old who hates waiting! Luckily we ran into A's sister in law and niece, who were there for Belindas pregnancy check ups. So Aunty San played with Will and kept him amused.

Our number was called and in we go. There the bombshell was dropped. The tests were not bulk billed and would cost $460! Oops! Hoping the credit card had enough of a limit. Must be close now!!! I ran into a friends mother that I have known since primary school and they were able to chase it up for me and luckily I dont have to pay for it. Not that we wouldnt have not paid for it, but it would have been nice to be prepared!

The lovely ladies did a great job with him, he was crying and trying to move the whole time. I had his legs and other arm under control and one lady had his arm. She was holding the top and the bottom while the other lady was taking the blood. Bloody little git was moving his elbow the whole time. She even commented on how strong he was - low muscle tone my backside!!

The waiting game is on now. It is a six week wait for the results to get back to our Paed from Concord Hospital. Hopefully it comes back negative all over! Then we can really get on with things!

Thats all for today!

Second Speech Appointment

We had our second speech appointment today. Last time we had to work on 3 signs - more, finished and help. Will grasped the more sign really easily, got the finished sign but has not really understood what is meant by help. So we will continue to work on help.

Our ST was amazed by how well Will is doing and how receptive he seems to be when she asks him to do things. She was playing with bubbles today and we both think the he attempted and said bubble. Then she was showing him a DVD that had children talking on it. He did the 'p' sound - per, and then tried the 'h' sound - her. She was very impressed.

So this week we have to work on the sounds, really push for the beginning sounds of things, ber, ber, ber bubble, per per per pop iykwim. As well as the sign for go and play games and use 'ready, set, go.' Hopefully by the end of the two weeks, Will will be doing the sign for 'go' and maybe even having a go at saying the word. Fingers crossed!

Paed Appointment

We had our paediatricians appointment today. It went better than I could have imagined. Like anyone, you always envisage the worst and think that the best outcome isnt going to happen. He discounted any link to the ASD, which was incredibly relieving.

Will has low muscle tone, of which we were aware of, as well as the fact that he walked late (18mths) sparked an interest in Dr W. But he was pleased with Wills behaviour and the way he walks and gets up onto his feet and such, so he isnt concerned with gross low muscle tone, but more concerned with his low muscle tone in his face which could be contributing to his speech delay. At this stage, Will is going to have a blood test to look at muscle enzymes in the blood and see what impact it has on his speech and whether this is linked to Oral Dyspraxia. I have had a quick look on the WWW for information and what it basically means is that sufferes arent able to move their mouth, tongue etc to produce audible sounds/words. Dr W is hopeful that Will doesnt have this, as are we, and he just wants this discounted. So we will have the blood test and the results come back in 6 weeks - another llllooooonnnnnggggg wait!

If the results are negative, and Dr W is happy, then we go back to him in six months. This would indicate that Will has an isolated speech disorder and progress should occur through his continuation to speech therapy. We have another therapy appointment tomorrow, so I will be back with more information!

Words we know

As of the 23rd of February Will uses or has said on occasions:

mum, dad, tiger (our dog), gar (shorten version of tiger), ball, cheese, chair, shoes, car, stair, ta, keys, he sort of says up and down, look, there, whats that, truck.

Thats all I can think of now - hence the reason of the blog.

He also signs 'more' and 'finished'. They were the signs we had to work on in the last two weeks and I am surprised by how well he has picked these signs up. He uses them when prompted, we practice them when playing and when eating. He gets really excited when I acknowledge him, so I think it is making him more communicative and feel understood.

I hope this continue to work, our ST said that he would pick it up quite easily as he was watching her attentively when she was explaining it to him as well as the fact that he likes to mimic you. It is very rewarding when he makes the correlation between words and signs!

My first blog post!

Welcome to the world of blogging Mel!!

I have decided to create a blog of Wills speech development. A and I were a little bit concerned prior to Will turning 2 that he was not heading in the right direction speech wise. He had met other milestones along the way but just not his speech. I wanted to get in there straight away and get intervention started so that Will would not be left behind.

We began speech therapy late Jan and he was assessed at having a moderate speech delay both receptive and expressive, although his receptive language skills were better than his expressive. At 2, he had about 15 words - the accepted standard is somewhere between 50 - 200 words! Not even close.

Our speech therapist is very positive about Will as we have him beginning speech so early and he will be more prone to developing at a faster rate than had we left it.

On a more personal side, I was devastated with the news. While I knew that there was something amisss, it does hurt when you get the final assessment and the news is confirmed. I struggled with it, along with A, but we are optimistic that Will has the capabilities to be a 'normal' speaker. I was thinking negatively, all the terrible 'what ifs' that suck you in when you are down and out....but his progress while ever so little keeps A and I very positive.