Tuesday, July 27, 2010

Introducing Mr Monkey

I just read a post on another blog somewhere on the internet, that talked about the use of harnesses on children. I won't link it because it really wasn't very pleasant. It basically took the mickey out of them and the parents who use them.

I use a harness for my son. Meet Mr. Monkey.

I bought him off eBay a few months ago. Best thing I ever did. Not only has it saved my son from being hit by cars or being lost in a crowd several times, but it is also useful for teaching him proximity. He can wander around a little bit, and so has his independence, after a fashion, but he can never stray too far from safety.

I realise that people can see right through the whole 'facade' of it not really being a backpack. But it still looks alot cuter and more friendly than a regular harness. Especially to the child who has to wear it. (And it's handy to be able to keep his dummy in it). I never needed one with the girls. They were taught to stay with mum, not to run off, to hold hands when crossing the roads and to behave themselves when out and about. But I still have not had success teaching this to my son.

Autism means that regular teaching methods don't work, and on top of this, it will take longer to teach him anything anyway. Autism for my son means that he may become anxious if we go somewhere different, or even take a different route to a familiar place. This anxiety usually manifests in non-compliance and tantrums.

It also means he is prone to running off - not because he is naughty, but because he may be afraid. On the other hand, like any other toddler, maybe he simply wants to go his own way. The problem is, he cannot understand that he needs to stay with mum/ wait here/ pay for items/ etc. Communication is indeed our biggest problem.

Something else to be considered, is that if someone came along to snatch him away, he would not know what to do. He is totally vulnerable in that sense. He cannot talk or communicate at all. If he cannot even respond to his name, how can I expect him to comprehend other instructions? It is stressful enough for parents to think of regular children being snatched.... then how much worse for one as vulnerable as Erik.

And so tantrums - to one degree or another - are an inevitable part of any outing for us where little man is involved. He is severely anxious, and there are serious communications issues. Ultimately this all adds up to being a threat to his safety.

But people outside - the public - they don't know this. You can't detect autism going on physical features the way you can with say.... Down Syndrome, for example. ASD children usually look like just an average kid. So people don't know at a glance that there is a disability here.

So I can understand if people jump to conclusions when they see a mother with a screaming kid on the end of a 'leash'. Really, I can. And if she looks frazzled, well she must have a bad case of 'parentitis'. But if she wants to have a more pleasant trip out, why doesn't she take the time to teach her child how to behave? She must be lazy. Or uncaring. Or both. Or something. Maybe she's just stupid and selfish. And anyway, all that kid really needs is just a good smack on the bum. That should get the message across. Better than treating him like an animal on the end of that leash. How cruel!

Yeah, I can understand... I used to think that way too before I found out that my son had ASD. So I guess I deserve it. It's certainly a lesson learned in judging others. But really, I don't care what people think. If that's what they want to presume by merely looking at me with my son, then that's their problem.

No....that's not entirely true. I care. Deep down, I do care.

It hurts when people jump to conclusions. When they make judgements about your parenting methods or skills when they have no idea of the facts. It really does hurt actually. I don't know why I care about other peoples' opinions, but I think it means alot to me that people are aware of the truth.

I suppose I can put this down to one of the lessons in life about humility. I am so sorry that I used to do this. It was ignorance, but still, it wasn't right. God has taught me not to judge, because you just never know a person's story or circumstances.

We love Mr Monkey. Mr Monkey helps me keep my son safe, and helps me teach him other skills. And the boy doesn't actually mind having to wear Mr Monkey at all. In fact, he has become a normal part of going out.


Thursday, July 22, 2010

Itchy Heads

We have head lice. That's right. Head lice. You know those nitty little things that crawl around and bite your head? And lay eggs? And are really hard to get rid of? Yeah. Them. I can hardly believe it. This is the first time ever we have experienced it.

It's funny, almost exactly 2 weeks ago, I remember my head feeling incredibly itchy one day after I came out of the shower, having washed my hair. It was strange, I remember wondering why it was so itchy. About a week later, I asked somebody to check my head, as I suspected I might have a case of the dreaded head lice. But nothing was found. I thought maybe it was just hormones or some other inexplicable reason. *shrug* Who knows. Can't be lice because we didn't see any eggs or bugs. Checked the kids and also found nothing..... not that they had been complaining of itchy heads anyway.

Well, this morning, my little Miss Jane walks around scratching madly and saying that her head was itching badly, and could I check her head for lice please. Clever girl. I checked. And I nearly died. At first I wasn't sure what I was looking at was indeed eggs, as I've never really seen any real live ones before. Only in pictures. When I tried to move one along the hair shaft, the jolly thing wouldn't move. Then I saw other ones just like it nearby. And then I knew for sure.

Oh the joys....

My first instinct is to place her in solitary confinement, put on a space suit and gas the little buggers out! But I can't do that and it takes all of my self control to not panic scream and tell her to stand still and not touch anyone else in the family. Um, hello. What about myself? I think it's a bit late for solitary confinement now! I cracked up laughing. What else could I do? I suppose this would have to happen sooner or later. I guess we are lucky to have gotten away with not having any for this long, with the Big Miss being in grade 2 now, and Miss Jane in grade 1. So now, I am pretty certain that I have had them all this time too.

Devastated about that.

Treating the kids is one thing. Treating my own hair is another. My hair is waist length, curly and thicker than most. Oh, this is going to be fun.

So all my previous plans for today have had to be scrapped in light of this new problem. But when something of this calibre drops into your lap I guess you don't have a choice but to deal with it and place everything else in the 'On Hold' basket.

Speaking of things coming in out of the blue, my little mans cold seems to have taken a turn for the worse today. He is pale with dark circles under the eyes. Mild fever, not eating. Falling asleep where he stands. I am worried. I have put him to bed without further ado, and am keeping an eye on him as I treat these other little pests. And I have been informed that I must babysit my nephew as well, as my mother must be out to view my auntie's body before the funeral tomorrow. In truth, I don't really mind - he's such a darling and I love him to bits - but it does mean that it's another thing to juggle today. It also means that I will have to bundle up Miss Jane, Baby Miss, Little Man and Little Nephew into the big van to go an pick up Big Miss and Little Nephew's Brother from school. Should be ok. Should be.

My weapons of choice: Poison Foam and the Fine-Comb of Death. Those nasty little bugs cannot escape me now! Muahahahahahaaaaaa!!!

Right now the three little ones are asleep, so I guess I better go and wage war on these little nitty-nits.


Sunday, July 18, 2010

Gimme Five!

I know, I know... I haven't posted for over a week now. The reason is that I have been so busy getting kids all back into the routine of school and catching up on things, that I really haven't had time. Also, my dearest aunt passed away a few days ago. She finally lost the battle with pancreatic cancer. This woman was the closest thing to my own mother. I am still numb. The funeral is scheduled for this coming Friday. So apart from the business of life and the grief of loss, there hasn't been much else that is blogworthy happening anyway.

My boy still insists on me assisting him to feed himself. It's very annoying, but at least he is still eating. I can't really say there have been any other new developments..... but an old one seems to have resurfaced!

Little man is now giving me high fives again! He used to respond to this when he was around 12 months. "High five!" we'd say, and he'd raise both arms up into the air with an expectant look on his face. He stopped it pretty quickly though. I recently did it again with him - the proper way - lifted his hand and clapped my own onto it saying: "High five!" and he loved it. Now, he responds by raising his own hand into the air expectantly, with a big grin and a giggle. So cute. He is also slapping his hand into mine when I say "gimme five" :). Very happy. I used to do that with him ages ago too, but I always had to help him respond to it. Now he does on his own.... but only with me! With anyone else, he needs prompting. I love this because it is a way of communicating a greeting to people, and I fully intend to make use of it in future as a way of helping him connect with friends and family.

Nothing else to say at the moment really. Except that I might try another mud cake recipe this week. (Am searching for a mud cake recipe that meets my standards satisfactorily :P - still haven't found one).


Tuesday, July 6, 2010

Regression Or Jealousy?

Remember how little man started feeding himself a couple of months ago? In case you missed those little memos, the relevant posts are here, here and here. They basically mention that he has started feeding himself, is continuing to feed himself, and again, is continuing to feed himself, all accompanied by lots of yippees and yays and happy-happiness.

Well, recently, he has decided that he wants me to feed him again :(.

I know! ... can you believe it??! Ohhh... what a let down! I'm so sad.

The thing is, he can still do it! He just doesn't want to. He wants me there. I don't know if this is a regression thing, or if he is jealous. By jealous, I mean that he sometimes does seem to be jealous of his baby sister. He sees me feeding her, but not feeding him. He cries and whines and sooks until I go there and 'help' him. And all I really need to do is put my hand over his. If I try to scoop up food, he resists where I go and leads the spoon elsewhere in the bowl. Sometimes all I need to do is scoop food on it with him, then let go so he can put it into his own mouth when he is ready. But he always wants me there and wants my hand on his.

I really believe he just wants my attention. He can still do this! But he won't anymore. To try leaving him go hungry until he feeds himself is not an option. It never is with autism in the picture, because he really will just go hungry. And yes, I have tried this approach before - back before I knew there was a problem and just thought I had a fussy kid. It doesn't work, and only leads to more whining, then a big tantrum. So frustrating :(.

I really don't want to go backwards with this, now that I know he can do it. It is good for his independence, and much easier for me given that I have an 8.5 month old baby to spoon feed too!

I have posed the issue on a forum but the answers I got were not what I wanted to hear LOL. However, it is good to know I am not alone in the situation. In a nutshell, more experienced ASD parents advised to keep feeding him anyway, as it is better to get the food into him (which I agree about) than worry about it all going backwards. And probably in time - possibly a very long time - he will eventually start feeding himself again. As I said, not what I want to hear *cry*. But I will take their advice anyway, mainly because I don't know what else to do. He needs to eat. He is already too fussy for my liking, and I don't want to make things worse.

I still cannot - for the life of me - understand why he just suddenly stopped.

Here's hoping.


Sunday, July 4, 2010

An Afternoon Out With Chocolate & Raspberry Cupcakes

This week, I had the honour of doing cake for a housewarming/birthday for a friend who recently moved here from another state (yay!!). Both she and her hubby turned 30, so it was all a bit of a mixed do. Chocolate and raspberry were the flavours chosen, something simple, and the rest was up to me. Since it was for birthdays as well, I decided to do a 6" topcake in addition to the cuppies. It had a slightly different take on the same flavours.

We took the whole family, and so ended up arriving a little bit later than we intended. Read on to find out how Mr Boy did for the afternoon :).

The topcake. No buttercream here. The inspiration for this cake came from picky cook, though the recipe itself is so far removed from the original that I can't even say I adapted it. I literally just used the idea. Turned out yummy though! The chocolate cake has a raspberry puree type filling and covered in creamy chocolate ganache. The ganache is half dark-half milk chocolate. Topped with handmade red blossoms. The birthday numbers were inserted when we got there and set it all up.

I made 48 chocolate cupcakes with raspberry buttercream.

Note to self: 4doz cupcakes is WAY too much for a only 20 people!! Haha!

Three dozen topped with modelling chocolate blossoms, all handmade.

One dozen topped with red fondant blossoms, also handmade.

I absolutely loved the colours on these. And I thought the red provided a bright occasional change from the brown.

All set up. We arrived a bit later than intended, so I didn't worry too much about a perfectly straight arrangement. Just pop 'em on and let people start eating! I think my fondant numbers could use a little work though... I really need to buy some cutters!

So; sometime after lunch, we packed up the whole family and headed out across the city to my friends house. My SIL did offer to babysit one, some, or all kids, but we chose to bring all of them along - even Mr Boy, though I considered leaving only him. The whole experience would be so much easier without autism to take into account, but I didn't have the heart to leave him to spend the day at home while we had a nice time out and about. On top of this, any social experience is beneficial for him. And so with a big smile on his gorgeous face, he toddled out to the car with us.

Since it was afternoon, the little ones napped a bit in the car on the way. This was good, since they needed the rest to tide them over until we got home. But, it also meant that when we arrived, they were both grumpy because they hadn't napped properly. As we pulled into their driveway, little man began to cry. It is an unfamiliar place, so I fully expected this. He wouldn't come out of the car with his Papa - (wrong!) - I had to do it. So I did. We walked inside and he began crying again. Unfamiliar! There were people in the living room already, so I sort of had an audience this time. It's always a little bit nerve wracking when he's throwing a tantrum and there are people close by. Especially when they are strangers. But, what can I do? *shrug* This is life now. Hugs didn't work. Blanky didn't work. Even dummy didn't work. Already tired and woken prematurely from a nap, it was all a bit too much for the boy.

Just backtracking for a second: A little while ago, I had been reading somewhere about tips to diffuse melt-downs. This was at a time before diagnosis, when things were still in limbo and we weren't sure what was going on. I remember thinking: But my boy doesn't do any of that anyway, so it can't be autism. Boy am I glad I read that stuff now. I can't for the life of me remember where I got the info from, so please forgive me for not referring. It might not even have been on the web at all! Anyway, one tip essentially was to bring a toy or gadget - something the child cannot resist - to distract them. This is hard with my boy. He doesn't take much interest in 'things'. But I got lucky this time. In recent weeks he has been into this little shooting toy. Something we got from a Maccas happy meal once. You load the little orange missiles, press the little orange button, and it shoots. He loves it. It was perfect. Very portable, simple, not noisy, and he loves it. So I packed it along at the last minute. So glad I did.

Since nothing else would settle the boy, I pulled out the toy and gave it to him. It worked like a charm. He quieted immediately, and took hold of the toy. Didn't play with it, just held it. I guess it provided that extra measure of comfort that he needed. After this, we were able to continue on into the living room and greet people properly.

Little man clung to me for most of the time. He'd take my hand and try to lead me around the room or make me sit down so he could climb the couch and jump on me. This was a pain. We are trying now to teach him that it is inappropriate to climb and jump on couches - he's getting too big to let it go. So every time he got a 'no Erik, no climbing', he sooked. This happened alot. It was annoying. But honestly, apart from the clinginess, he did really well for the afternoon.

There were no other melt-downs... no major issues. He walked around, snuggled his blanky, clung to me, or clung to papa, nibbled a bit, but didn't really eat much, and just generally hung around. And we hung around, way longer than we had intended! - an indication of how successful the afternoon was for us.

By the time we left, he was so ready to go home. Impatiently waved his goodbyes (with assistance - he still doesn't do this on his own, though he knows what it is now), and happily trotted out to the car with me.

He did so well that afternoon, and I am so proud of him. And I'm very glad I decided to bring him along after all.

Cakes were a hit too :) Hooray for pleasant days!


Thursday, July 1, 2010


I have been reading through (skimming really) some other blogs written by parents of autistic children.

I am in awe of these people.

It just really reminded me that I am only starting out on this journey, and that I have a very long way to go. Their wisdom, the depth of experience .... amazing. Sometimes as I read about some of the struggles and difficulties they've had in various areas, I just think man... there is no way I could ever cope with that! And then I start worrying about whether these things will come up later on. My boy is still so young. Well, he'll be 3 in August. That's only two months away. It makes me wonder if maybe, I haven't really seen anything yet. Maybe the worst is yet to come? Or what if it already is worse than I think, and I just can't see because I'm in the middle of it? In that case, it is a good thing. If not, then in the words of Johnny Cash, I better "get tough or die". I have a timid and somewhat fearful nature at the best of times. Something I'm not proud of, but struggle to change. And I don't think timidity is going to benefit me or anyone else when I have to handle difficult situations.

Another thing that sparked within me was wondering whether or not we are giving Mr Boy the best help we possibly can. In many of these blogs, the writers give much credit to ABA therapy. And hours upon hours of time with it, and with other professionals ... the OT, the Paedie, the Speechie, Intervention workers, etc. But all that we currently have for the little man are Speech - fortnightly on average; EI - also fortnightly on average; childcare now once a week (yes, I consider that as a 'therapy' for him too). That's basically it. He will see the paedie maybe, twice a year? Is that enough? What more should I do? What more can I do... with a little baby in tow and 2 other kids to work around?

Suddenly, I feel so small and helpless. And right now, autism seems like a really big monster that I'm not equipped to fight.