A Blog About a Bloke-Living with WHS

And also when Ryley is well again..But for now..just consider making a hammertime suit, or investing in a music vest, while listening to tv commercial music and typing on the new electric typewriter. Tweet

I am not quite sure how to title this post. Today, I kept Ryley home from school. He has seemed really tired and lethargic all week, and he seems to have a really heavy cold. So. I just thought he needed a mental health day. He was pretty pleased to stay home too. And he has cheered up enormously. Braeden has also been out of sorts this week and I had to pick him up from daycare early yesterday. He made a miraculous recovery too once he was home. (Maybe we all need a holiday..Barossa is where I am thinking!) Anyway. None of that information is really relevant to what I want to post about. Ryley and I were sitting out the front in the sunshine waiting for David to come home this arvo when the kids next door started sitting outside. Nothing unusual there. They say 'hey' to Ryles and continued on hanging out. Ryley watched them for a bit then came back and sat down with me. What I saw in his eyes nearly broke my heart. So badly, did he want to jump that fence and...

Today we got our copy of this story. Lanceamus Jones is a little boy who happens to have Wolf-Hirschhorn Syndrome. This a lovely story with the simple message that everyone is special, no matter what their differences are. Ryley absolutely loves it!! So does Braeden. You can order it from here: Lanceamus Jones Tweet

If you double click on it, it should open in another page and you can see it better!   I know this will be hard to see, but this is my Ryley, aged around 2 and 1/2 years old when he had just started daycare. How tiny is he???!!! Despite the fact he has really only been a 'big' kid for a couple of years, I forget how he was always one of the really tiny WHS kids. So the daycare must have found it somewhere hidden away and gave it to me this morning when I dropped Braeden off. He didn't mind being in his standing frame when he was at daycare, but when it came to him being in one at home, he hated it! He still has a Kelly Chair similar to the one in the bottom right picture, only it is a bigger one. He uses it at school. I know I am bias. But geez he is a little cutie!!

So we all know Blogger has some...er...technical issues this week. I will blame them for my lack of posts. Ok? Actually, I wouldn't have had time really anyway. I am currently busy organising our major fundraising event for the WHS conference. So, I will plug it at some stage here on the blog. But if you follow BlogaboutaBloke on FB you would have already seen me plug it. But this post is about the most amazing thing in the world. Well, maybe not the most exciting thing (it's not about someone coming in and cleaning my house for me), but it is close enough. We have actually finished some of our renovations. Now don't all fall over. I know. It is fairly unbelievable. But, it's true. A little while ago we decided to start yet another project to add to the list of about 100 projects we have going at the moment. We decided to tear our front study apart and make it into Ryley's room. That way, the kids could start spending more time in their own spaces rat...

Thanks for the slippers Braeden. Thanks for the amazing things you made at school Ryley. Thanks for the plants David. And thanks for the parma that smells delish, and I am hoping tastes as good. Thanks for behaving yourself today. Thanks for giving me icy-pole kisses and arms-around cuddles. Thanks for the snuggles and the tickle-pickles. Thanks for making me watch Play School and Dora the Explorer 753 times a day. Thanks for asking me 'Why' after everything I say. Thanks for the handleading to the cheese yet again. Most of all: Thanks for just being Ryley and Braeden. No matter what the challenges may be, you both make me who I am today. I am so proud of you both. So I thankyou both (and David too), For making every day Mother's Day. Tweet

Truly. I am the most excellent mother. Hands up who thinks so. That silence sure is deafening. It will remain deafening after I tell you all my latest moments of excellent mothering. It began yesterday when I battled yet again with Ryley to dress him. Braeden has also decided it would be fun to have a dressing battle with me too. So joy of joys, I battled them both yesterday. Bus arrived. We get up on the bus and one of the kids from Ryley's class says "Hey! How come Ryley isn't in his Pajamas?" Ooooooohhhhhhhh Faaaarrrrkk! Told the attendant to put Ryley in his seat as I jumped off the bus and bolted inside (I don't think the attendant heard me actually, and meanwhile Braeden was just partying somewhere on the bus). Ran around like a blind woman searching for PJ's. Oh. Yeah. That's right . Don't have any clean ones due to vomit and...er...well...let's just say the pants were not clean. Grabbed the top he had worn the night before and...

Something that has frustrated me lately, not only as a professional working in the disability sector, but also as a parent of a child with a complex disability, is the government's lack of support, or rather, the inequality of support given. Last year the federal government brought in Helping Children With Autism  packages for families who have a child with an Autism Spectrum Disorder under the age of 7. Families are now able to access an extra $12000 to use for extra therapies or equipment. The agency I work for are one of the providers of these packages and there has been many many issues associated with this extra funding. Firstly, as a professional, I saw an increase in incorrectly diagnosed children. There were a number of families who actively sought a disagnosis of ASD just to get this money, despite the fact they were getting adequate early childhood intervention services. Very sad that families have to resort to that to get adequate help don't you think? There is...