Autistic Children Blog

I feel like a bit of a dill at the moment. Our keyboard was getting stuck on the delete button, (no doubt thanks to food dropped) therefore sending all my emails to the deleted items bin. That was ok til I realised that all the emails that I had saved to read later had disappeared. All the unread crap was still in the deleted items folder but anything that I had read was gone. Not in the deleted items, not in the recycle bin, just not there. The annoying thing was that they were the emails that I wanted to keep. I got home today and it happened again. I called our computer guy and he had this new wiz bang way of looking at my computer via his. We went through things with him sending me an email. After looking on something else I said to him “See, that email’s gone now too.” I’m sure I heard him laughing under his breath as he suggested I go to the drop down menu on the right of the screen. It has the options to “show all messages” and “hide all read messages.” Hmmmm somebody’s been clicking on my inbox! I was so glad I hadn’t gotten him out to the house.

Beth amazes me. She can change things on the computer like this without fully mucking it up. Maybe she does it just to mess with my head! She changes the screen saver constantly, here and at her grandparents house. She fixed the heater in my car the other day. I have to stop myself at times when she’s ‘playing’ with something broken as she’s often showing me how to fix it. I’d love to be in her mind sometimes. I think it’d be scary, overwhelming, loud. I also think that with certain things there would be an amazing clarity, knowing that what she thought was spot on.

We’ve had lots of problems going to school this week. Every morning it’s a battle to get her out of bed. Twice she’s gone back to bed after breakfast. I’ve come out with her clothes and she’s snuck back in. She seems to be enjoying school but she clearly loves being at home with me more. I guess it’s a compliment but it drives me batty at the moment. It’s hard to tell whether she’s genuinely sick at times and can often only base my decision on how many weetbix she has consumed. Usually it’s 6!

We had swimming last night. Once again Beth responded well to Paton. Paton has changed her name from Caprice and it’s almost a weekly joke as I tell Beth to say goodbye to Paton. She smirks and waves “Goodbye Caprice!” Last night it was with an accent. “Adios Caprrrrice” as she rolled her ‘R’s. Paton is so good with her. I noticed last night how excited Beth was. Paton would be in the middle of saying something and Beth would just leap in the air and spin around, spraying water everywhere. Paton would wait patiently and continue her sentence. Bill came with me last night and commented on how well Beth is doing, he hasn’t watched her swim in ages. She seems to be really ‘getting’ it.

Not sure what this weekend holds. Paul is sailing all weekend so I think we’re going to all go and watch him on Sunday. Have a good weekend everybody! xxx

I had a HAGS meeting today. For those of you who don’t know, HAGS stands for Happy Autism Group Support. A group of friends and I decided to start a support group that focusses on the positives in having a child with autism. We had all been to support groups that the focus seemed to be people whingeing about their kids. Not that we have a problem with whingeing, we all do it ourselves, but not ALL the time. We’d met people who seemed to want nothing more than to ‘beat’ your life story with a worse one. It would make you feel that your worries didn’t count because somebody else had it much worse than you. It started off with 4 of us going out for dinner. We had such a good time that we joked that we should call ourselves a support group, then our husbands couldn’t complain about us going out to dinner all the time! It’s grown a lot since then (3 years ago I believe) with up to 30 members on our mailing list. We’ve done school holiday programs, mum’s nights away and frequent dinners. The funny thing is that often we don’t even talk about our kids with autism. We have a bond that has brought people from all walks of life together, we ‘get’ each other and more importantly we like each other.

We had a meeting scheduled today. It’s normally on a Monday but we had a special guest today and we adapted around others availability to see them. Katie and Bec came out from Dogs for Disabilities. We got our lab via a companion dog program through the guide dogs. She is in effect a Guide Dog reject, a John West dog for those of you who live in Australia. We were on the waiting list for 3 years but she was well worth the wait. As a guide dog she would have been dreadful. She pulls when she sees other dogs (not so much as she’s gotten older though) she ferrets through bins to eat whatever she can, she chews on things and she has been known to poo in people’s bedrooms when visiting (sorry again Tiff!) I had visions of a blind person reaching out for their chewed up stick, stepping in a pile of poo and being dragged across a road of traffic to sniff another dog’s bum! Despite all this she’s a wonderful dog. As far as companion dog duties are concerned she does bark if she sees Beth out towards the car when she shouldn’t be, or outside the front door at night. She doesn’t help in meltdowns or anything like that. We did decide from the get go though that she was to be a family dog anyway and she’s fantastic at that. She goes to her bed while we’re eating, in fact she starts to go there as soon as she sees me bring the plates to the table. She waits at the door to go out to the loo and barks to come back in again. She’s pretty fantastic.

Dogs for Disabilities is quite different from the Guide Dog program. They tailor a lot of it to your wants and needs. They can come out and help you choose the type of dog that you want. I love the fact that you can be your own puppy raiser. They will teach you how to teach the dogs. They will even come out and teach your existing dog if possible. People can choose a breed that they want. Of course some dogs aren’t good for this type of thing but Katie can advise which dogs are. She brought along a standard poodle, a groodle (golden retriever/poodle) and a golden retriever. The last one was like a big teddy bear, he was so cute. We’d like to get a puppy for company for Minka in a couple of years, it would also be nice to get one from a puppy for the kids as it’s a shame to miss out on all that cuteness. (Remind me of this when I’m up in the night tearing my hair out about all the wee spots on the floor!) It’s great to see somebody willing to develop a program for kids with disabilities, they’re starting to be seen and heard at last. If anybody would like any information please let me know and I’ll pass on the details.

Beth and I have had a lovely cruisey weekend. Paul has taken Bill and Bridie on a cubs family camp weekend. Beth would be a nightmare camping and I’ve never camped in my life – and never want to. It’s just not my thing. Being a long weekend, we’re had since Friday night to ourselves, and it’s now Monday morning.

Beth had another swimming lesson with Paton on Thursday night. She’s a terrific swimming teacher and Beth really responds well to her. She’s really starting to look like a swimmer now, she’s got the breathing on the third stroke thing down pat and is making lots of bubbles with her legs kicking. She gets rewards of somersaults or jumping in the deep end if she does well, and she often does. I’ll try to sneak a video camera in next time. You’re not meant to take film but as she’s the only one in the pool at the time it might be ok.

Friday night is when the campers left so we had a quiet night. In fact we’re had a quiet weekend. We’re very compatible, Beth and I. She’s happy to do her own thing which I allow within reason. I sorted heaps of stuff out, got some reading done and caught up on episodes of tv shows that I fell asleep watching. We had a sleepover of our own on Saturday night as Charlie and the Chocolate Factory was on tv and went til 10. Bethie watched it in my bed. On nights like these I realise why she takes so long to go to sleep. She just can’t seem to lie still. I would drop off and be startled awake by Bethie leaping around, even after the tely was turned off. Even if I left the room, I’d come back to find her spead out on her tummy over the whole bed. She just can’t keep still.

We’ve had all of Beth’s favourites that nobody else but me likes. Spaghetti Bolognaise is one of our all time favourites which we had on Saturday night for dinner. We had pancakes for Sunday breakfast and have had fruit toast every day for lunch. Nothing especially junkie which is good, just old fashioned favourites. Beth has an excellent appetite, something I’m eternally grateful for each time I speak with people whose kids with autism have food issues (lots and lots of them.) She loves her fruits and veggies. She has 6 weetbix for breakfast every morning, though this morning it was 3 weetbix and 2 pancakes. She doesn’t like to try new spicey foods which Bill does (though he’s a nightmare to eat veggies) but I can live with that. She does enjoy things like tacos and butter chicken so I think as she gets older she’ll try new things.

Well that’s about all I’ve got to share today. We’ve had a lovely quiet weekend enjoying each other’s company, all is well in the world! Hope you all had a good long weekend too xx

Beth and I have been to Sensational Kids today. Whiskers (not her real name) the Occupational Therapist wasn’t there today so it was just with Rod for Speech Therapy.

Beth was in a good mood today and was quite excited to be going to Sensational Kids. We had another Speechie observing today which doesn’t seem to bother Beth. Rod asked her to make up a story and tell him about it, draw it and then write 5 sentences about it. It became clear that Beth was chosing something from a movie when she started talking about ants and grasshoppers and life cycles. I asked her if it was from A Bugs Life or Ants and it was indeed from A Bugs Life. She did find it difficult to stray away from the story of the movie though we assured her that the movie could be the basis and she could make the rest up. They must eat seeds in the movie but she didn’t know what vegetable they were from so found that difficult. In the end it was established that she was on a farm and the vegetable she’d be planting was pumpkin. It was funny when Rod, writing upside down, missed the second ‘p’ in pumpkin and Beth had to correct him. The ants and caterpillars were to come and eat the seeds and the sun would be feeding the pumpkin.

When it came time to draw the picture Beth didn’t add in herself planting nor the pumpkin. Rod called her on it and she drew them in and circled them. Rod then asked if she had drawn them before he had suggested and she stated that yes, she had drawn them in in the first place. Although we shouldn’t have laughed we couldn’t help ourselves when she then told Rod he must be lying because she had done it and he was saying that she didn’t. It was said with a smirk so no malice intended.

Rod gave her ‘joining words’ so that her sentences weren’t just statements. She did really well with these with not too much prompting. She wrote “The sunlight feeds the pumpkin. Then the ants eat the pumpkin and they bring the food to the ant hill.” The word ‘then’ at the beginning of the second sentence meant that it was still relating to the first sentence. The ‘and’ was to extend the sentence. We are to do the res at home as Beth’s time was running out and she needed a Rod shoulder ride to the ball pit. It was a great session and I was very proud of my girl.

We had Beth’s friend Erin over for a playdate on Saturday. We had lunch then went off to see Gnomeo and Juliet at the movies. Not a bad movie, the kids seemed to enjoy it. Beth was so cute, as we were walking along she was pointing out things to Erin. “This is where they chain up their bikes Erin, this is the water fountain that we drink from Erin.” After the movie we had hot chocolates and milkshakes as has become our custom.

When we got home things were a bit different. Beth finds it difficult to understand that friends do what each other want to do. It’s not all about her. We walked in the door and Beth said “Let’s watch Shark Tales now Erin.” Erin must have said that she didn’t want to watch Shark Tales. I called Beth out of her room and explained that she needed to do what Erin wanted as she was our guest. Beth’s response was that no, as it was her house, Erin needed to do what Beth wanted! She kept asking Erin what movie she wanted and Erin clearly didn’t want to watch a movie. I could hear Beth’s voice rising higher and higher as things like “Right, I’ve made a decision, we’ll watch Shark Tales” started to be yelled in a high pitched voice. I called her out again and told her in no uncertain terms that if she kept insisting that her guests do what she wanted then they wouldn’t want to come for a play anymore. I told her that I wouldn’t invite them either as that wouldn’t be fair on them. To her credit she took it on board and went back to playing nicely with Erin and Bridie.

After a while Bridie, Bill and Erin played on the Wii and Beth played on her DSi. Her and Erin made lots of recordable noises too, playing them back in different modes such as a high pitched squeak or in robot speak. They all had fun which was the main thing. It did however show me so clearly how difficult it is for our kids to understand social situations. Beth’s version of having a friend over is watching a dvd or them watching her playing a game, she still hasn’t quite mastered the art of back and forth. Small steps though, she certainly enjoyed herself and I think Erin did too.

I’ve been feeling a bit pissed off this week. Nothing major, just a frustration at some people. I had a call from an old friend who had her son pre diagnosed with aspergers this week. She had a feeling as the signs have been there. She’s an excellent mother and deliberated for a while before taking him for an assessment. She decided to go for it as, if nothing else, it would help her to know what to do when his anxieties got the best of him. As those of us with kids on the spectrum know, anxiety is usually the main issue. It’s like it’s more extreme in our kids and counts for most of the behavioural issues that they have. Or at least that’s what I’ve found. Anyway, she was told that yes, he did seem to have ticked all the boxes. It doesn’t matter whether you think it may be true or not, the reality still hits you like a sledgehammer.

At the other end of the scale are the people who desperately want their kids to get a diagnosis. I know of a woman who, throughout nearly her whole role of motherhood has tried to get one. She has three kids and through kinder and school has, one by one, taken her kids to specialists. She’s asked questions of parents who do have kids with autism/aspergers and knows all the right answers by now. She couldn’t get it to start with as she didn’t know enough about it but finally she’s hit paydirt and has got her 3rd child diagnosed. I used to feel sorry for her and those like her. How sad that she wants sympathy so much that she’ll invent problems with her kids just so that she’ll get it. Now though, I’m just pissed off. Not only because her kids will have a label that isn’t necessary. Not even that she’s rorting the system to fuel her sickness. More that my friend is hurting. She was genuinely worried that getting a diagnosis might do more harm than good, that she didn’t want to put a label on her child that may not be necessary. He’s a gorgeous child, a little quirky, a little different, the things we love about him. In the end it was to help him, to help the family to help him and to help the school to help him. Not much in it for her at all. I feel like people like this other woman are making a mockery out of people like her. Unfortunately she’s not the first nor the last person that I’ll meet who do the same thing.

Yesterday was the day that the little movie was made about Beth and Jessica. It’s for church groups, to show people that they don’t have to be afraid of disability. It’s a wonderful idea and should go out to schools and other groups also I believe. After speaking extensively with Lindsay and Richard who were doing the movie I realised how little people knew about disability. How isolating it can be for the whole family at times and especially for the child involved.

The girls were really excited and quickly changed out of their school clothes when they came home. I had done a big clean up of the house which entailed shoving everything into my room and shutting the door! Bridie is moving into Beth’s room this week and we have bought a double bunk but we’re not getting it til the weekend. We had taken Beth’s bed apart anticipating getting it last weekend so she just has a mattress on the floor at the moment. I hope people watching the movie don’t think that we don’t have a bed for her. It reminds me of Harry Potter under the stairs. We don’t bother getting the autistic kid a bed, they don’t need one!

When filming started the girls were singing songs with each other. Or at least I could hear Beth’s voice ringing out. She loves anything that gives her the chance to showcase her crazy side. They kept sending Richard out so that they could change their clothes, they were obviously playing fancy dress while they were singing. We then went up to the local park. What a stroke of luck, they had just reopened it yesterday after replacing all of the play equipment. Richard filmed as Lindsay and I talked. She told me she would love to come out to a hags meeting to discuss the parents perspective on our kids having friends who don’t have a disability. Richard had a flip camera which you can see yourself while taking a photo of yourself. He gave it to he girls to take photos of each other and them together.

After filming them playing Richard did a little interview with Jessica about what her thoughts are on autism and what she would say to kids who were scared of kids like Beth. Her answer was something like “Some people think they’re crazy but once you get to know them they are really fun.” I thought that summed it up so well. Her and Beth have become really good friends. She’s such a gorgeous girl and is wonderful with Beth. Earlier Richard had interviewed the 2 of them in the bedroom when they had been playing. They had answered together the questions about how long they had known each other and what they liked about each other. He said he would then show the photos and the clips with their voices over the top. I can’t wait to see the finished result. What a fantastic project. How great to educate the world that our kids deserve friends too. That they have feelings and humour and are worth being friends with. They are our future and more and more kids seem to be diagnosed with autism and aspergers each year. Maybe we have to try and stop putting them into our mold of what’s right. It’s possible we can learn from them and try to be more in their mold. It’s certainly more entertaining than ours!

I’ve got Beth home sick today. We had a school picnic last night which was fabulous, what a great school community we have. Bethie had lots of fun wandering around but she had a persistant cough and a runny nose. She came in with me last night and coughed for most of the night so I made the decision to let her stay home today. I regretfully decided that I’d have to miss art class. Then I figured that she’d probably just be watching dvds at home anyway so she could do that at Tiff’s house. She was really good so I was glad I went, I got lots done and I saw Beth open up and show a side that we often don’t see.

Beth’s always been good with Tiff and she hasn’t seen her for a while. We walked in and the first thing Beth said was “I like your hair Tiff.” Tiff had her hair cut a little while ago now but Beth hasn’t seen her in probably about a year. She notices things that nobody else does, especially not kids. She looked around the kitchen and commented how small her house was. Tiff replied that it was just the kitchen! Beth hasn’t been there before. She soon discovered where the dvds and videos were and went to work searching for what she wanted. She’s very narrow minded in which she knew which dvds she wanted, she just didn’t know that Tiff didn’t have them. Tiff’s husband Terry was there and Beth hadn’t seen him in even longer but as usual she remembered his name. She then took over the remote to put on the subtitles etc, she had a real knack for these things and often shows me where I am going wrong.

When it was time to go Tiff thanked her for coming. You could almost see the cogs turning as Beth nearly said thanks back. Then she looked at Tiff and said “Your welcome.” She then asked where Terry had gone as he had left for work.

Often with kids like Beth, I’m sure people think that they’re oblivious to what’s going on. If they seem to be absorbed in ‘their own little world’ it’s like they’re not participating in ‘our world’ at all. Beth remembers everything. She asks people about their families and their animals as well as their likes and dislikes, and stores them away. When Rod was talking about his brother at Sensational Kids Beth said “You mean Simon.” He was amazed that she remembered. That’s one of the things that makes me so proud of her. She cares enough to ask, then it shows that she’s interested because she brings these facts up. She might ask somebody how their child or pet is by name, even adult’s parents, she remembers it all.

I’ll just finish off with something that I read on facebook this morning. Don’t tell a child on the spectrum that they can’t do something that they’re already doing. If they’re already doing it then they know it can be done. You should say they shouldn’t be doing it or that they’re not to do it. They are so literal that you need to explain exactly what you mean. My Beth is great at loopholes, if there’s one to be found, she’ll find it. Sarcasm and hidden meanings just don’t work for these kids.

Have a great weekend everybody xxx

Beth is coming down with a bit of a cold at the moment. She does tend to be a bit of a drama queen when it comes to being sick and milks it for all it’s worth. She also seems to get naughtier when she’s not well. She’s been doing lots of fun things such as drawing on herself or on her walls and getting the honey out of the cupboard to squeeze into a spoon. She’s also been really sloppy lately, not taking much care of what she’s doing. Stuff like cleaning her teeth and wiping her mouth on her clean school top. Or this morning, Beth had her weetbix. Her tactile side means that she keeps putting her hands into the weetbix bowl. It doesn’t matter how often I tell her not to she still does it subconsciously. She had done this this morning and I told her to stop. She then ran her hand through her hair. I told her what she’d done and she just looked at me blankly and said “What?!” She drives me mental sometimes.  I often leave her with a flannel when eating and leave the room to do other things.

On the plus side we had a good session yesterday at Sensational Kids. We saw Rod first. He got her to write a story using 4 sentences. She wrote about the Powerpuff girls. She then had to draw a picture about the story which she did, then Rod coloured it in. She did this quite well. Of course her drawing was in precice detail with the right shade of blue, the right coloured hair and bow, everything. You could ask Beth to draw a Mr Men character and she’ll do it right down to how many freckles they have, she’s amazing like that. Rod then wrote a story about himself calling himself Super Rodney! He wrote 2 sentences and got Beth to write 2 sentences. She then drew the picture. Beth did find this a bit harder and chose a superpower for Super Rod that was Violet’s superpower in the Incredibles movie. She does seem to have a great imagination but most of her things are from a movie or TV show that she has filed away. Rod explained that he likes to start out with something fairly easy at the beginning of each session so that there is a ‘win’. This sets the tone for the remainder of the time.

Whiskers has a good session too. She too focussed on the positives rather than the negatives and has formed a close bond with Beth. As she pointed out, why would you tell a stranger how you are feeling. She needed to gain Beth’s trust so that they could talk about things that friends talk about. I’m so pleased with how it is going, Beth just loves going there.

After Sensational Kids Bethie had McDonalds for lunch and I took her to get a haircut. The hairdressers that we go to is excellent. It’s called Zozo’s in Upwey and the staff there are fantastic with Beth. She loves to get her hair washed as we all do, and chatted away to Zoe, asking her lots of questions as she does. It was a good day all around really.

Just a very quick one. Sensational Kids have just announced that for bookings make from this week only 50% off initial consultations for speech therapy and occupational therapy. Appointments must fall between February 23rd to March 25th 2011. The offer ends on Friday 25th February. Please mention either my blog or that it is advertised on Facebook. As most of you know we have been going to Sensational Kids for 2 years now and the results have been amazing. Beth speaks so much better since working with Rod and her self awareness has come along since seeing the Occupational Therapist. I can highly recommend going along to Sensational Kids if you think it could work for your child too. You can use Enhanced Primary Care and the Mental Health plan, both from your doctor. You can also use the PDD initiative 20 subsidised visits available from your Paediatrician. The link to them is here. Sensational Kids.