Autistic Children Blog

Beth’s been a bit of a grumpy bum this weekend. Mind you she got her you know what this morning so if she’s anything like me it’s no wonder she’s been such a cow! Yesterday she was most disappointed because Bridie was going to a party at a gym and she wanted to go too. She does all the convincing things such as “But Laura is my friend too, Laura really likes me,” which makes it hard to explain because I’m sure she does like Beth, she just doesn’t need to invite her to her party. Beth and Bill went to Grandma and Grandpa’s instead where Beth had to be changed twice due to digging in the wet garden and getting herself filthy. She’s in one of her insolent moods, lovely to live with. The others aren’t much better, it’s that time of year where they are more naughty than nice.

I went out last night and Beth was still wide awake when I got home after 11pm. I told her to hop in with me so she got straight in and went straight to sleep. I think she can sleep with me again tonight, otherwise we’ll be up ’til all hours. She’ll do all she can to make sure that she doesn’t go to sleep and I just make her lie and be quiet so she tends to go to sleep a bit earlier, to ease the boredom if nothing else.

Beth had choir today with Donna Williams. Donna has moved the choir outside in a little paved area which is just lovely. The problem with Beth was that there was so much to look at and fiddle with. She went in a shitty mood and tried to bring everybody else down to her level. She kept sitting down and fiddling with stones, overturning big rocks which were in walls to see if there were any bugs or beetles that she could play with. Donna asked her to put back some stones at one point as she had picked them all up from a pets grave. She played with snails and basically did anything she could not to join in. When I got her up by whispering sweet threats in her ears she stood with her arms folded, for the most part not singing at all. When I asked her to use her voice she yelled out loudly rather than sing.

Donna did a lot of the favourite songs that they have learned including 2 that Beth had chosen. Donna is excellent at making up songs too so she asked everyone how they were feeling and Anthony (her accompaniest) played a suitable tune. For example Kayla was feeling happy, Tilly was feeling friendly, Gwen was feeling hot (It’s 31 degrees out today). Beth’s turn “How are you feeling Beth?” – “Bored.” Great, thanks for the input! They sang about that too. In the last song about bubbles Beth kept calling out that she wanted to change her pad. Then after it had all finished and she finally got to leave as she wanted, she disappeared down the garden for a play!

Paul in his insanity decided to take the kids to Knox to buy my Christmas presents this afternoon. I settled in to watch an episode of Dexter and with 10 minutes to go heard the dulcet tones of Beth outside the door. I had told the kids that there would be no more treats for them as Christmas is only 3 weeks away. Well that didn’t go down well with Beth. She had such a tantrum about getting a dvd that Paul had to bring the whole lot of them home. She continued it for some time, even running out the front door to try to get back in the car. We told he she had to go to her room to calm down for a while. Paul took Bill and Bridie swimming so Beth’s now reading and I’m on here. I squeezed in my last 10 minutes of Dexter too so I got some time I guess!

I’m feeling a bit bad today after last nights post. I guess I shouldn’t write things while feeling shitty. I’ve spoken to the parent of one of the children I wrote about and she let me know that her daughter had no idea that she had upset me as she had and that she was just laughing as Beth had her bathers under her top and it looked like she had big boobs. She pointed out that if any other child had done the same thing they would have laughed. I guess I am oversensitive, more so with Beth than with my other kids as I know she is an easy target.

 I also spoke to Beth’s teacher again today and she said that no, Beth hadn’t said anything about playdates and sleepovers that day. She said that she had had a word with all the children about speaking about things that other kids weren’t invited to, she didn’t single out Beth but just said that everybody has been in a situation when they didn’t get invited to things and that it hurts at times. The kids did understand as we’ve all been there. I just feel bad for the parents involved as even though I didn’t use the real names they realised who I meant and understandably it would have hurt their feelings. So for that I do apologize and I thank them for their communication today.

I’ve had Bill home the last few days and Beth home today too. Bill got no sleep last night with a bad cough and Beth decided to follow suit with the coughing this morning so figured as I had him home I’d leave Beth home too as I’m off out for brekkie for Bec’s birthday tomorrow and didn’t want her to get any worse and have tomorrow off. In the end she was fine.

Last night Beth came home all excited talking about packing her bag for a sleepover and to get her bathers to go for a swim at a friends house. I’ll call this friend Tina. I explained to her that Tina hadn’t said anything to me at all about a playdate and while I knew that she did indeed have a pool it was something I’d have to discuss with her parents. Beth has never been invited to anybodies house before as a playdate and I assumed that she had heard the kids talking and thought that she was invited too. I planned on talking to Tina’s mum when I got the chance.

When it was time to pick Bridie up from school I didn’t realise that Beth had stuffed her bathers under her top. When she saw Tina come out of school she leapt from the car and called out “I’m ready for the playdate” very excitedly. Tina and another friend Julie both looked in confusion as I ushered Beth back to the car, telling her that no, she had had the day off sick and she was to wait in the car. The girls asked me what she meant and I explained that Beth had thought that Tina had invited her for a swim in her pool. Tina started laughing which started Julie and the other girl with them laughing along with her. I was feeling rather rung out by kids up coughing all night and said to them “You don’t need to laugh at everything that she says, she just wants to be your friend for goodness sakes.” Both of the girls stopped then and Julie commented that yes I was right and that it was really sweet.

Now I don’t want you to get the wrong impression here. Both of these girls have been lovely friends to Beth over the years, Julie in particular is fantastic with her. I just wanted to show what happens when there are a few girls together. By themselves they might have had a bit of a chuckle but it was full on raucous laughter and I felt horrible knowing that this could happen at other times. Luckily Beth doesn’t seem to realise when these things happen. I then proceeded to embarass myself by turning to Bree and bursting into tears. I’m feeling a bit sensitive today anyway and I’ve been in tears off and on since. I’ve sent an email to Beth’s teacher explaining that Beth seems to be a bit obsessed about going for a play and wont stop talking about it. I think that kids don’t realise that when they talk about sleepovers and swim play dates that if Beth is there she thinks that she’s included. It can be quite hurtful to her to know that she’s not invited so she keeps pretending that she is. It’s a hard one because they are only kids and that’s a fairly grownup concept to get your head around. I know they meant no harm at all and Beth didn’t even care but it hurts me nonetheless. I am so dreading high school.

I can’t believe it’s nearly Christmas. I am so organised this year, it’s unbelievable!

Normally I don’t like to put the tree up until the 1st December but this year we went even earlier. Saturday I took Bridie Christmas shopping with me and she desperately wanted to put the tree up when we got home. As I have mentioned there has been a lot of emotional things going on in our lives lately and I didn’t think it would hurt to put the tree up a few days early. I’ve done most of my Christmas shopping and wrapped nearly all of it so I am ridiculously early.

Last year was the first year that I’ve put presents under the tree. Beth always had a habit of unwrapping everything, even if it wasn’t for her. I even tried wrapping it in front of her so she’d know how boring somebody elses present would be. I guess there’s that temptation or the magic wish that it may turn into something else after it’s wrapped. I get it, I love the magic of Christmas myself. She promised me religiously last year that she wouldn’t touch any presents so for the first time the tree looked gorgeous with most of the presents set around it. This year we’ve done the same thing. Bridie is the main one who’s instigated it this year, she was my helper, putting decorations on the tree and putting the presents around it, she’s so excited.

I’ve found this year pretty easy for the kids. Beth still likes to play with some toys so I got her some of those Zhu Zhu guinea pig toys that whiz around the room and make noises. You can get various things such as loops for them to run around in. I got her one with a little pram that they push while moving. If she likes it / them then I can get her the rest for her birthday in March. I’ve also got her a book on the Pixar movies. This was quite hard to find and very expensive in some shops. I went to a bookshop who kindly looked it up under Pixar Encyclopaedia as we didn’t know if the book existed.  I wanted one that isn’t just about the characters but about who plays them as that’s Beth’s passion, knowing all the information about the actual movie. Both myself and the girl in the shop got excited when we saw one called Pixarpedia. She said it was overseas but could order it through their database and it would only be $20. Bargain. Bev and John picked it up for me but the price was in fact $80! I think the girl had read it as $19.95 instead of $79.95. I ended up looking it up on Fishpond and luckily they had it for half price. I’ve ordered it and will take the other one back. I know sometimes you have to pay a lot for books but not for an 11 year old. I think that’ll be Beth’s Santa present though I don’t usually like the expensive presents to be from Santa. Why should he get the credit!

Once again Beth has decided not to talk to me about anything in the future, including what she wants from Santa. I don’t know what it is but she wont talk about anything that is going to happen, even good things. I’ve decided that next year we’ll get her an Ipad as I’ve heard that they are fantastic for kids with autism for schedules for high school. A friend whose son is going to high school next year has one and says it’s fabulous. They took photos of all the classrooms / lockers / recreational areas and have put them onto his schedule. At each time of the day he can refer to his Ipad and see exactly where he has to be. I can go to the high school next year and do this with areas and even pictures of staff members to alleviate the stress of the new situation. Then when her transition days begin I can whip the brand new exciting Ipad out and hopefully it’ll be the cherry I need to get her to check out the new school.

I’ve got my Bill home today with a dreadful cough. We’ve all been lucky this year with sickness (touch wood), I’ve been thinking how we’ve missed it. Please don’t let the last couple of weeks of term be filled with sick children. I’ve got way too much socialising to do!

Sorry I haven’t written for a while. I’ve been flat out during the day and it’s hard to get onto the computer when the kids are home. There’s been nothing major to write about either.

We had a fairly busy weekend. The kids went to Bev and John’s for Saturday night as I had a garage sale on Sunday. It turned out to be an absolute fizzer but never mind, lots of donations for school’s white elephant sale anyway. Beth apparently went to sleep looking at all the traffic going past on Burwood Highway, along with the trains it can be seen from the bedroom window.

I’ve noticed a calmness in Beth that hasn’t been there for a while. She’s been much happier too in my opinion. I’ll have to speak with her teacher about it to see how she’s been in the classroom as at home it’s been terrific. I wonder if the pill has anything to do with it. We had an inspection today on our house which we are renting while we eventually build our new house. It’s quite amazing how much nicer our moods are when the house is sorted and easy to look after. I think we’ve all been so much calmer. You know what they say, cluttered house, cluttered mind. Well mine’s been cluttered for years. I got rid of so much stuff for the garage sale. I’ve decided that unless I love it it’s not going into the new house with me. I’ve got boxes and boxes of stuff that have moved from house to house. Now it’s all gone and it feels terrific.

School is always hectic at this time of year. What with school swimming, school productions and excursions and organising Christmas things it’s flat out. We’ve also got some awful things going on at school. One of our beautiful grade 1 girls has been battling liver and lung cancer for the last 11 weeks and we now know that she hasn’t much longer to live. My heart goes out to the family, I can’t even comprehend the hell that they must be going through. They’re a religious family which is a blessing. Whether you are a believer of God or not, I believe that at times like this it must give you strength. It’s also wonderful for little Mikayla who truly believes that heaven will be awesome and God is waiting for her. My kids have been very affected by this, especially my Bill. Bree calls him my Eeyore child, the one that thinks that the world is against him. She gave an Eeyore example which was something like (Think in an Eeyore voice) “Why does it always rain on me, there are no clouds anywhere else”. He does tend to be like this but on a serious note, he’s also my sensitive one. He often asks me if I miss my mum who died when I was 13. He worries about me dying and how much he would miss me. He has however never contemplated his own death until now. I feel so bad for him as I of course cannot tell him that he wont ever die or even that I wont ever die. I’ve told him that only the good die young, that Mikayla is such a special little girl and that God needs her help in heaven. We’ve ordered some ceramic fairy mushrooms from a potter lady at school, with the biggest one having Mikayla’s name on it. She’s so worried that she will be forgotten so I sent her a message to say that we will always smile when we look at these. I’ve asked at school about Bill seeing one of the psychologists offered so I don’t know how much more I can do. It’s an awful situation but unfortunately one that sometimes is unavoidable. I’ve sent a message to the parents involved apologizing in advance if Beth blurts out something inappropriate! You know how kids with autism are, they call a spade a spade. To her credit she is actually quite concerned about Mikayla and has watched with interest when there has been stories on the news about her.

We had Sensational Kids this morning. We haven’t been for a while due to staff holidays and time changes. Unfortunately Whiskers (occupational therapist) wasn’t there today so we just had Rod for speech therapy. Wow, what a great session we had! Rod has done some new training and approached todays session differently. He set up a real life situation which he and Beth wrote out and then acted. We decided to do going to the movies. Beth devised a step process to how this would be done. She needed a bit of help at first as she jumped from me saying “let’s go to the movies” to sitting down at the cinema. Still, she picked it up well. First we had to decide, get in the car and get there, buy the tickets, buy the food and drinks, go into the movies, come and out go to the toilet, go for hot chocolate and go home. Interesting enough although it’s almost exactly what we do, we always take out own popcorn and maltesers and drinks though she put in that we buy them there.

We acted out the scenario. We had puppets for Bill and Bridie, Rod and I played Paul and myself and of course Beth played Beth. I started by looking on the internet and us all decided that Cats and Dogs was the movie we would see. We got in the car and drove to Belgrave. Rod (with the aide of a toy) played all the extra parts. First Beth went up to buy the tickets. When asked she told which movie it was for and that it was for 3 kids, 2 adults. When it came to the food however there were major stumbling blocks. She doesn’t understand money anyway but that wasn’t really the problem. For some reason she got stuck on wanting to get 10 tubs of popcorn, 10 tubs of maltesers and 10 drinks. We explained that we only had 10 dollars. She just kept asking for the same thing. In the end she ordered a drink for $5 and maltesters for $5. She then had no idea what to do about the popcorn. We helped out, telling her that if she got a smaller maltesers then she could afford the popcorn too.

We then went into the movies where she shared out the ‘food’ and drink. She then insisted on using the real toilet and Rod and puppet Bill pretended to go to the boys toilet. We then went to order our coffees which was so cute. She ordered Rod and I a cappuccino, Bill a baby chino and Bridie a milkshake. She had a hot chocolate with a marshmallow. We then drank them and went home. At the end of the session Rod asked if there was anything she had trouble with and she straight away said the money and the food which I thought was great. Usually when she’s stuck on something she tries to change the subject or mucks around but she worked through it and recognised that as a problem area. I was so proud of her. Of course she got dumped in the ball pit at the end as a reward. Rod said it was a terrific session as she stayed on task for the whole 45 minutes. Clearly this new way of doing things agrees with our Bethie Boo.

 

 

Background

This collection of short stories has been compiled by five members of HAGS – Happy Autism Group Support. HAGS is a support group for people who live in the Dandenongs  and who care for children and young people who have autism.

HAGS has 15 members, whose children range in age from 3 to 15, all at different stages of their education, and learning in  variety of settings.

 A frequent topic of discussion at HAGS meeting is how frustrating it is to ensure our children get access to the education they need.  There are a large number of issues that relate to this, and the purpose of this collection is to highlight the challenges we face and the problems in the education system that must be fixed as a matter of urgency

We ask you, as a Member of Parliament standing for re-election, what is your commitment to the following”-

1. A significant increase in new funding to the  Department of Education and Early Childhood Development to be directed to Integration funding in the Program for Children with Disabilities (PSD)
2. An immediate  change to the eligibility criteria in the PSD  based on needs rather than the supply of funds, and the removal of criteria that exclude children with aspergers who have significant behavioural and learning challenges
3. An increase in the level of specialist school-based support services including Occupational Therapy, Speech Therapy and Psychological services so they are   available to children on the autism spectrum on a regular and ongoing basis. This may include allocating new funds to schools, to secure this through private providers
4. Removal of the eligibility criteria for entry into the new Ferntree Gully Autism school to include those with autism who have IQs above 70.
5. Provision of parity in the level of integration funding between the public sector and independent schools.
6. Provision of access to appropriate before and after school care at primary and secondary level through school programs or flexible child care funding packages to parents of children.

 

 

 

From Bec

My son is 8 years old and has autism. He is now in grade 2 of a mainstream school which has a great integration program and a commitment to supporting children like my son. He was diagnosed when he was 3 ½ years old, and attended a specialist kinder before starting school. Unfortunately the kinder did not believe he would need integration support at school, and it was not until Term 3 of prep that he received level three funding under the Program for Students with Disabilities.

 His behaviours at school include frequently absconding (once nearly being hit by a bus), refusal to get into and stay in classrooms, hitting, kicking and punching  teachers and students, climbing fences and trees to escape, screaming, and  hiding in the school yard.  He has no concept of danger or impulse control, and is highly anxious. It is nearly impossible to engage him in learning in the classroom and he cannot read or write.

Before he received aide funding in prep, the school used it own funds to employ an aide for some of the time. The other time I would have to pick him up at 12 noon. In prep and grade 1 he only attended school 4 mornings a week as there was insufficient aide funding. Sometimes, even with aide support, his behaviour was so extreme I would be asked to collect him. The school has been very supportive of me and my son, but he simply can’t be managed without a full time aide.

The school considered applying for an increase in funding but is fearful of actually losing funding. Other parents in my autism support group have told me that, increasingly, principals are reluctant to ‘rock the boat“ with the Regional office.

I contacted special schools and Wantirna Heights autism school and was told that because his IQ was over 70 he was ineligible to attend.

My son has not had regular speech therapy, occupational therapy or psychology services at school. Because he does not have full time aide support at school, and I may be called at any time, I have been unable to even consider paid employment. This means we can’t afford private specialist services. So the Education Department isn’t providing them, and I don’t have the money to pay for them.

The first two years of my son’s primary schooling have been the worst of my life. I now suffer stress related physical illnesses including heart problems.

Raising my son is so hard. I just wish we could get the services he needs. There’s something very wrong with the whole system. It’s not fair on my son, or principals, or teachers or the other kids in the school.

From Sandie

My son was diagnosed with Aspergers Syndrome last year in 2009, shortly after starting Prep at a small mainstream school.

He is highly sensory-seeking and not able to sit still for more than a few minutes at a time, his sensory defensiveness means he finds groups of people distressing. He is not able to stay on task – personally or academically, and is distracted from simple tasks at school including drinking water or eating his lunch. His low muscle tone means he cannot play sport will or hold a pencil properly. He does not register personal body sensations such as food on his face or body temperature. He needs adult help to identify the likely cause of physical discomfort and distress.

A total IQ score cannot be calculated for him because, like many people on the spectrum, he is brilliant in some areas and lower in others. Despite this, he does not qualify for a specialist school, yet he also does not qualify for aide support in a mainstream school. He has a ‘severe pragmatic speech disorder’, yet his pragmatic speech score (which is ‘severe’ and well below peer level) was the criterion that disqualified him from aide funding in 2009.

Six months after spending substantial personal funds on limited occupational, psychological, and speech therapy, he qualified for FACHSIA funding when the qualifying age limit was extended from six to seven years. Since then this government-funded therapy has seen my son’s speech improve, he is learning to write, and he is learning social skills through psychology to enable him to integrate better at school and overcome his anxiety. Next week when he turns seven we will lose access to this funding; which we have benefited from for just over a year, and we cannot afford to continue this level of support to him as a single income family.

I resigned from my position with the Federal Government in January 2010 (who denied me leave without pay to care for my son) to support him at school in the absence of an aide. I have worked closely with the school to implement a range of physical and visual supports to aid him in staying on task and to keep him as regulated as possible. His unregulated behaviour is not only detrimental to his learning capability, but is also disruptive to his classmates. The school does its best to meet my requests, however my son is one of twenty students in the class, each with their own unique needs. The resources of the school system are extremely stretched and without an aide for him the school has limited capacity to deal with extreme behaviours, such as him running away when he is confused or anxious.

I will remain unable to return to work as I will continue to perform proxy-aide assistance to him at school. In addition he can not attend before or after school care due to his sensory seeking and sensory overload tendencies.

My son falls through the gaps – he does not qualify for an aide in a mainstream school, he is unlikely to be accepted into a private school because he does not have aide funding (and would lower academic scores on the MySchool website), and he does not meet the IQ requirements for acceptance to a specialist school that provide supportive therapies.

 

 

From Sarah

My name is Sarah O’Connor and I have an 11 year old daughter – Beth – who has autism. Beth attends a mainstream primary school at present and is in grade 5. She has level 4 funding and by and large it has been excellent.  I have however always had to source any specialist services that we have used. These include speech therapy, occupational therapy and social skills groups. This often costs me somewhere around the $250 a fortnight range depending on what therapies we are doing at the time or what we can afford at the time. A social skills group that Beth attended cost me $700 for 10 sessions, to be paid in advance. I have to travel 45 minutes each way to attend these services once a fortnight which means that Beth has to miss a day of school each fortnight.

 I believe that therapies like these could be arranged in schools. This would allow the children to attend school on a more regular basis and the therapists being able to observe the children in the school setting, rather than making suggestions to the parents to then relay to the teachers and aides, making it difficult to communicate what is required at times.

Beth has enjoyed her primary school years but as she gets older it is becoming more and more obvious that she is not like her peers. She has recently begun menstruating and has no problem calling out in class if she feels that she needs to change her pad. Beth is emotionally and behaviourally younger than my 5 year old in some things that she does. I don’t believe that she would cope at all in a mainstream High School setting. She has no stranger danger and no traffic awareness either.

I read with interest that an Autism specific high school would be opening up in Ferntree Gully. When I spoke with the principal of the existing autism primary school she told me that the children have to have an IQ level of under 70. Also, the year they are opening is 2012. This cuts us out on both levels as Beth would be in grade 6 in a special school. They are only taking up to year 7 in 2012. Also her IQ is over 70. I would be happy for Beth to go until she is in year 11 then see what happens then if age was the only issue. I believe that there has been false advertising about this high school as newspapers are advertising only that it is an autism specific school. Nowhere did it mention that the IQ level had to be under 70. Children with a low IQ already qualify for special schools so they have 3 options. It seems that my child has only 1.

I believe that the Education Department needs to realise that the stereotypical autistic child of these days is the higher functioning child, that often they do have an IQ of over 70. I know of children with a lower IQ who could manage better socially and behaviourally than my Beth. Where are these children to go? In my case, not only do I have the issue of bullying to worry about, I also have the issue of sexual abuse as my child is a very gullible girl. Already we have had to deal with her lifting her top up when kids have thought it funny to ‘get her’ to do things. God forbid what could happen with teenagers. There has been a lot to say about parents being able to send their children to the same one as their siblings. But shouldn’t parents have the same right to send their children to an autism specific school if they choose? I have the right to send my child to get an education and have this education in a setting that I feel is a safe environment. Surely that is my right as a parent and my daughter’s right as a human being.  I want high school to be a positive experience for both of us and I don’t believe it will be with the education system as it is currently.

 

 

 

 

 

 

 

From Margaret

I have a 14 year old son with Asperger’s Syndrome, or an Autistic Spectrum Disorder, as it is now known. He began his primary education at Haileybury, where he lasted 2 and a 1/2 terms as they found him difficult and did not want him at their school. He was fortunate to be accepted at the Currajong School, a private special school, which catered for his needs, but at the cost of enormous travel times, as we had to drive to East Malvern from Narre Warren East in peak hour for 3 and a half years. After a great deal of research, he then transferred to Belgrave Heights Christian School, where he has been very well supported. In saying that, there are many things that have either been very difficult to obtain, or have been obtained at great cost to us, both financial and in time. We have effectively paid double fees to obtain additional integration support, and have paid for many therapies over the years, including speech therapy, occupational therapy, psychology services, paediatricians and some alternative ones as well which are always expensive.  My son is very fortunate that we have the resources and the ability to chase and ferret out services to help him, but this is not the case for many families.

When my son was younger and I needed a mainstream school for him to transition to, I researched many, many schools within sensible driving distance of where we live, both government and private. I was told at that time that he was unlikely to get any funding at a government school as he had Asperger’s, although the amount he would have got in the government system had he been eligible would have been up to 10 times what he eventually got in the private system, so my only choice was private.

He is now in Year 9, a challenging year for any parent, and in our case compounded by his Asperger’s. Although I have nothing but praise for his school, the services offered within our education system fall very short of his needs. He thinks very differently and he learns very differently from the average student, and this produces challenges on many fronts. With VCE only another year away, his needs seem to be increasing if he is to achieve this milestone. He is a bright boy, but his learning style often means he misses important information.

Special needs education needs a great deal of overhauling to bring it anywhere near to meeting the needs of these children. Asperger’s and autism are areas that often miss out due to the ‘invisible’ nature of their disabilities. Not only do we need to have portable funding so that parents can make appropriate choices for their children’s education, but the system needs to make enormous changes to cater for the needs of these children to give them access to the same education that is offered to everyone else.

I hope this information and my personal experience, although necessarily brief, gives you some insight into the plight of families with a child with special needs, particularly those on the Autistic Spectrum, and that you will be able to advocate on our behalf to bring changes to a very flawed system, including the advent of portable funding.

 

 

 

 

 

 

 

 

 

 

 

 

From Catherine

My son is 12 years old and in his last year at mainstream primary school. He was diagnosed with an autism spectrum disorder and ADHD when he was 5, and in 2008 was also diagnosed with an intellectual disability. He also has major language problems.

He receives level 3 funding which is about 15 hours aide time a week. He needs an aide for most of the time he is in class, and the 15 hrs is spread across 4-5 mornings. He needs constant reminders to keep on task, needs a significantly modified curriculum, removal from class for remedial literacy and numeracy, and regular supervised “movement” breaks. He also needs aide input at the start of each day and for any transition. He needs to be reminded to eat and drink. He constantly chews his fingers and nails and they frequently bleed.  Managing change is very difficult for him.

On days where aides are sick or not at school he really struggles. It is common on these days for him to come home and ‘explode” which can mean physical aggression, broken windows and hours of trauma for all of us. 

The funding my son gets does not cover a lot of his other educational needs. We pay for occupational therapy which is really important for school. They help with strategies to increase concentration, manage all the sensory issues these kids have (my son is a picker, a chewer and needs to move to concentrate), and help with the common problems these kids have such as fine motor difficulties. Every child with autism at school should have annual OT assessment, follow up sessions and time for the OT to spend with teaching staff and aides. 

Technology to help these kids – laptops, computer based social skills programs, ipads, IT based communication systems and organisers are all basic parts of education for kids with autism. We pay for these. We also pay for speech therapy, additional literacy support within the school, and psychological services including work on anger management, impulse control and other social skills.  In the last year we have paid $4,960 for literacy support, occupational therapy, speech therapy, psychology and assistive technology.

 

Next year he will go to mainstream high school, our only option as he would have to travel 4 hrs a day to get to special school. The social and academic demands will increase and the gap between he and his peers will widen. There is no before or after school care for these kids at secondary school so I cannot increase my work hours from the current 11 hours per week.

Fifteen hours of aide funding, and no regular school based speech therapy, occupational therapy or psychological services for a kid with autism, an intellectual disability and adhd is a disgrace.  I want my son to learn the skills he needs to manage as independently as possible and to have a job.  It is shameful we have to fight so hard to get so little.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Just a quickie today. I wanted to put a link to the newspaper article that the HAGS got into the local paper. The photo is also here

 

Please forgive me for the fact that I look like I’m wearing a towel. I blame my stylists for that as they told me that as it was a 33 degree day it was perfectly acceptable and I didn’t need to wear my chiffon wrap that I had brought along for the occasion. Of course the stinking hot day wasn’t captured in the photo nor in the words. Therefore girls I’m afraid you’re fired! I also need to point out that Amanda, you do pissed off very well! We were all told to have serious looks on our faces, hence the non smiles. It does tend to go against what HAGS stands for (Happy Autism Group Support) but it was called for on this occasion.

I’ll also post on here the files that we have sent out to many politicians and also to newspaper and current affair type shows. As an election is looming we thought it was good timing to get out there what our issues are. There are so many more kids like Beth out there, kids who are clearly autistic as far as behaviour is concerned but quite bright with it. It seems that the stereotype is still out there of the child who sits and rocks in a corner and wont let anybody touch them. I’ve met a lot of kids with autism over the years and over 90% of them have been higher functioning and nothing like the movies version of autism. That’s where we need the government to take notice. Get out of your caves and see what is in front of your face now, not what you think is there. I believe that something will be done about this, I fear however that it will be too late for my Bethie and high school. Still, in the wise words of Mary Poppins “If you reach for the stars all you get are the stars. If you reach for heaven you’ll get the stars thrown in.”

It’s Monday afternoon now. When we last spoke I had been to see Dr Mark and told that he wanted me to see our paediatrician in regards to Beth’s dreadful behaviour since getting her period. I couldn’t get in until the 21st of January so I called and made an appointment with Dr Jeff who runs the practice where we go. He’s very difficult to get in to see as he is the head doctor there and is very experienced and just wonderful with his patients. As he is more senior I wondered if he would feel happier about making such a decision about Beth.

My appointment was for 2pm on the Thursday. I love going to see Jeff because he usually gives you several alternatives to what you can do and explains in detail what each one entails. I explained the issue with Beth and agreed that she had been almost depressed since getting her period 3 months prior, not her happy self at all. While putting an 11 year old on the pill certainly isn’t something that I want to do, I hoped that we could try something for the 2 months until my appointment with the paediatrician. Jeff as usual was excellent and said we had 3 alternatives. Firstly he said he could call the paed, stick his hand down the phone, grab him and let him know that no, 21st of January just wasn’t satisfactory, we need an answer now! I liked that answer! Secondly we could try to make an appointment to see the endocrynologist who we had been seeing on and off for years. Jeff originally suggested that we go there as Beth is (and always has been) such a tall girl. I told him that we had only seen him last year and that he was not concerned about her height, in fact that she had nearly stopped growing. I asked Jeff if it was true that there was a correlation between girls getting their periods and stopping growing and he said that there was. The third solution was the Jeff decides to put Beth on the pill himself. He did have another one which in his words was “suck it and see” but as he didn’t factor it in his number alternatives I chose not to even think of it!

Jeff asked me what I thought. I explained that while I fully appreciated Mark’s reticence at putting Beth on the pill, if we tried anything after January we wouldn’t necessarily see the difference it would make in the school situation. She’d be in a new class at the beginning of the year and may be acting out anyway. At least if we tried something now I will know when we go to the paed if it has worked or not. We can then see what course of action to take. Jeff agreed and said that he had no qualms putting Beth on the pill. As he pointed out, she has been well developed for quite some time and has the body of a 13 or 14 year old. Therefore we decided we would trial the pill. I know that it’s not what any mother would want for her 11 year old but the big picture is that she’s not a happy girl and consequently she’s making our life not a happy one. She finds it difficult enough to understand her feelings so it must be so awful for her not knowing what is going on in her mind and in her body. It may not be that it’s hormonal after all and we’ll have to think of something else but I think it’s worth a try.

Friday was Bridie’s 6th birthday so we went out for dinner to our fave pizza restaurant, La Collina. Saturday was meant to be the school fete but due to the forecasts predicting flooding it was cancelled. Beth hadn’t understood properly as, at Bev and John’s in the afternoon, she came out demanding that we go to the fete. It was 4.30 and it took a while to calm her down, she wasn’t happy at all. She cried most of the way home, insisting that we turn the car around and go to the fete. It’s heartbreaking to see her like that. If I put myself in her situation and she really didn’t get that it wasn’t on, it must have been so disappointing for her that it wasn’t.

I had a HAGS (happy autism group support) meeting the morning. A few of us have done stories about our educational experiences and problems. Mine in particular was about the hope to get Beth into the autism specific high school. We’ve drafted various emails with information to many many politicians and to newspapers and news type tv shows. Surprisingly we haven’t heard from as many as we thought. Still, the local paper came and took a photo of a few of us along with a story. We weren’t allowed to smile as it was a serious topic. I hope it does some good, something needs to be done with this near epidemic of kids with autism.

What an emotionally draining couple of days. When I picked Beth up from school on Monday her teacher asked if we could have a meeting on Tuesday morning. She said that Beth had been calling out in class and being disruptive. She’s also been really defiant and rude at times, telling the teacher off for shushing her. We’ve seen the change in her at home too. Monday night she had Minka (the dog) in her room with the door shut. When I went in there to see what she was doing she had a squeezy bottle of honey that she was putting onto Minka. I must have just caught her as Minka wasn’t sticky when she came out. Beth was still up at 11 that evening when she came into the bathroom saying that she had to wash the honey out of her hair. I said it was tough, she put it there so she’d have to cope with it and sent her back to bed.

I got to school on Tuesday at 8.30am and Beth’s teacher organised Beth to go into before school care. We ended up having the meeting in the principal’s office. They were concerned that these moods are so out of character for Beth. Where in the past we have been able to jolly her out of her bad behaviours now she seems almost depressed. She’s not joining in with the other kids as much as she used to and is constantly being disruptive. The principal made a point which I hadn’t thought of. This behaviour has escalated since Beth started her period, 3 months ago. Coincidentally it was also the time we started seeing the naturopath though I don’t think that would cause such extreme behavioural changes, especially for the worst. Thinking about it made me realise that if Beth had inherited my hormonal imbalances that that could be the answer. We also decided to implement a reward system on an hourly basis so that she could see that at the end of each hour there would be a consequence for her behaviour. Her teacher reported to me at the end of the day that it had been a good day and that she would draw up a chart and tick each hour off.

On behalf of Beth I went to see Dr Mark in the afternoon. He said that in these cases, if she was 2 or 3 years older he would suggest putting her on the pill for a couple of months to see if there was any change. At least that way we would know if the changes were due to hormones. However as she is only 11 he was loath to do this and suggested that I see the developmental paediatrician that we haven’t seen for a while. I got home and called them only to be told that there are no available appointments until the 21st of January! Unbelievable. I was put on a waiting list but told that there’s 20 people ahead of me. I was nearly crying on the phone. There’s no point in us going somewhere else as if we are a new patient the waiting lists will be there wherever we go. One of the frustrations in my support group is that nobody has found a really good paediatrician that they can highly recommend so I guess it’s better the devil you know. I think it’d be easier to cope if I didn’t have Bridie’s moods to deal with too. I’m feeling pretty frazzled and drained at the moment. I think I’ll call the doctor and see if there’s anything else that he can do.

We had an eventful finish to last week. On Thursday Beth was to be in the grade 3/4 classroom as the grades 5 and 6’s were off to lightning premiership, a sports day. Beth doesn’t participate in sporting events and between myself and the principal we agreed that it is best that she stays back at school during these times. I felt it was unfair on the other children in Beth’s team as she dawdles along, not trying at all. If there is a relay then this means that her team always comes last. I don’t want the other kids resenting Beth for not giving a stuff if she wins or not.

On Thursday when I went to pick the kids up I was called into the principals office. Beth had gotten into the teachers office, rifled through her bag and got her phone out. She then had apparently tried to download applications. She also painted on other kids artwork. I was so angry at her for both things but especially for the fact that other kids things were ruined, something that my poor kids have to put up with. The principal and I discussed what her punishment should be. The next day was fabulous Friday when the kids get extra time outside to play games. It was also the grade 5 and 6 sleepover on the oval. We decided that Beth should miss both of these things. Of course Beth was most upset when I told her this and went wailing out to the car. My friends Bree, Bec and Prue were out there and wondered what had happened as Beth can be very melodromatic when upset by something. Bree said that she held her hand to her forehead, wailing “what has she done to me!” I was so angry at Beth and let her know it too.

When I got home I called Paul to tell him what was going on. His first question to me was why was she left unattended. I hadn’t even thought to ask that question as I was so cross with her. The next afternoon I went to the principal and talked further with her about it. Bree came along with me as I hate anything that may be construed as a confrontation. I was even feeling a bit lightheaded, that must be where Beth gets her melodrama! Bree started off for me then I let the principal know how I felt. She told me that Beth is not funded for an aide for one half of lunchtime and that is when the incident occurred. I asked if there was anything else that could be done and we decided that when she is not aided that she could walk around with the yard duty staff member. If she is with her friends on the oval then she is fine, but when she is by herself then that’s when she looks for trouble. Much as at times she doesn’t want to be supervised, we would explain to her that it is necessary after she did what she did, at least for the time being. I believe it was a good outcome.

I guess my biggest frustration is what Beth is doing. For those of you who read my blog regularly you know that I hate that she has no respect for others property. I hate that she does things that even a 4 or 5 year old would know isn’t the right thing. As I said to the principal though, awful as it is, that’s the way that she is. In our meetings it’s all been about getting her ready for high school and giving her the responsibility of a grade 5 girl. She needs to be more independant and she needs to get used to less supervision. The reality is though is much as that’s what we want for her it just isn’t going to happen. Rather than worry about what will happen if her aide time gets cut in high school, let’s deal with her the way she is now. I’ll worry about that when the time comes. I am constantly diligent in checking what she’s doing when at home or at somebody elses house. If there’s a quiet time I think she’s up to mischief. Often she’s just sitting reading or going through the dvd pile, then I can relax for 5 minutes and have a cuppa with my friends. I always have to check though. She’s into everything. She doesn’t do it to be malicious, she does it just because. She’ll pull pens apart or draw all over herself with them, she chews on whatever she can find, she pulls batteries out of things, anything she can fiddle with she does. She always has and unfortunately she probably always will. I wish it wasn’t true but the only way to stay sane is to try and prevent it from happening.

Saturday I went to my friend Dom’s wedding so the kids were at Bev and John’s for the day. Sunday (yesterday) was Bridie’s birthday party. In the morning Paul took Beth to Donna Williams house for choir which she’s started up again. She set it up in the garden so that the kids could dance around. Beth didn’t want to go but Paul said she had a good time in the end. In the afternoon we went to one of those awful playland centres. Bridie wanted to have it there as a friend had hers there. She got to sit on the throne on wheels and be pushed around with all of the other kids walking behind her in a train singing happy birthday. She loved it and was beaming the whole afternoon. Bethie had a good time though she got told to get out of the toddlers area. She must have looked ridiculous in there, she’s as tall as me now so probably looks odd enough jumping around in a playcentre.

Once again when we all got up this morning Beth tried to pull the sick child on me. Bill had a bit of a cough when he got up and she looked at me and said  “I’m sicker than Bill, cough cough.” I replied with something like “Tough, you’re going to school!” Nice mummy!