ABR Improvement #4

So we're starting to get into the improvements that are a little more subtle now, but no less amazing.

This improvement centres around Ayla's hip mobility and her ability to bend forward from the hips. Here's a photo from November 09:



You may be able to see that in order for Ayla bend forward from the hips, she needed to raise her bottom off the table. This also meant that she would overbalance and fall forward off the table so the person challenging her needed to hold her high up on her arms to control her movement.

Here we are in April 2010:



This photo may not look much different to you guys but I was there to watch her challenged in this position both times and the difference is really astounding. Her bottom doesn't need to lift as far off the table and her 'helper' is only holding her wrists. Not only that, but I noticed that when she was moving into this position, Ayla showed much less apprehension about bending forward because she knew she was more stable.

So there you have it! ABR improvment number 4....done!

And Another Opportunity to Keep it Real

And another stunning opportunity to keep it real and something we all experience....

Andrew Bolt is a blogger who also writes columns Melbourne's Herald Sun, Sydney's Daily Telegraph and Adelaide's Advertiser.

A mother writes of waste and filling forms

Saturday, April 24, 2010 at 12:04am


Kevin Rudd is spending up to $1 billion to fix the disaster he caused by spending $1.5 billion on often useless, unnecessary or dangerous insulation.

Meanwhile reader Elizabeth wonders how many more forms she must fill in for the Rudd Government - and how very often - to keep getting a carer’s pension of just over $100 a fortnight for looking after her autistic son:


Dear Andrew,

My name is Elizabeth and I am a 39yo married mother of three boys aged 17, 13 & 7. My husband is an accountant who works full time for and although I am a university qualified accountant, I work as a Family Day Carer, currently working a 36 hour week. I enjoy working with and caring for the children that I have and get great support from my Family Day Care scheme, however the primary reason that I began working as a Family Day Carer was so that I was able to work and at the same time care, for our youngest son Nicholas, who has autism, an intellectual disability and epilepsy. We are very lucky in that his developmental issues were picked up early and although his autism was not officially diagnosed until last year (meaning that we missed out on the Federal Government’s Autism package for those under 7), we received early intervention services for him since he was three years old.

He is a delightful child in his own way – he enjoys playing sport more than anything else in the world. He is not yet able to join in teams as he cannot understand the rules, the need to do follow the rules or even why he has to share the ball around. However we do the best that we can to expose him to as much of it as possible. As much as Nicholas is delightful, he is also not easy to care for. As with most children with autism, he has little concern or understanding of the feelings of others. He repeatedly tells us that he hates us, or doesn’t love us, or will tell either my husband or myself to find a new place to live. He told me that God shouldn’t have made me his mum, because he didn’t want me, and that when he wakes up in the morning I should be gone. I know that he doesn’t really understand, but is still heartbreaking. He finds reading particularly difficult and is in the reading recovery program at school, but each night he ‘melts down’ when it is time to read the reader and get some homework done. Most days are one big argument with him refusing to get out of bed, eat breakfast, get dressed or showered, put shoes on, clean his teeth, eat his lunch, drink his drink, hold hands while crossing roads, do homework, eat dinner, put a jumper on, take a jumper off, listen to a story, go to bed, go out, get in the car, get out of the car, say hello to people who say hello to him or give his parents a hug (let alone a kiss). And this is tiring. Very, very tiring.



We have the help of a psychologist (who is amazing) but at $150 per hour we can only afford so many visits to her each year (only half is rebateable by Medicare). The medication (melatonin capsules) that we give him to get him to sleep (otherwise he will still be up at 11.30pm) has just gone from $36 to $43 for 30 capsules. His occupational therapist that we need for various issues such as toileting (he is still not night trained and has a fear of defecating), distal tremors, handwriting and other fine motor skill issues costs us in excess of $100 per hour.

But all of this is okay because each fortnight the government gives us a Carer Allowance of just over $100 per fortnight. I know that you are probably thinking that $100 a fortnight is good money, and it is, and we are grateful for it, but it doesn’t come close to covering the costs that we incur in raising Nicholas. To help him cope at school, both with the routines, expectations, and the social side, we have to write ‘social stories’ for him and if we are lucky he will let us read them to him! We do this in the hope that he will get something out of them that will help him at school and in life. We need books and other resources to help us do all of this. We stay up way after midnight writing these stories and attaching the appropriate visuals, printing them and laminating them so that he can’t rip them during an autistic ‘meltdown’. We need specialists such as the ones mentioned above. We need medication to make him sleep and medication to stop seizures as well as oodles of stickers for sticker charts for desirable behaviour. We need ear plugs for him for the football because although he loves going and watching he cannot cope with the noise due to sensory sensitivity. We have to make sure that we sit in the same place each time so that he knows where we are. He has to eat the same food each time because this is his ‘football food’. We have to go the football using the same route or he becomes anxious about where we are going.

And today in the mail I received yet another letter from Centrelink telling me that I must ring them and inform them that I still care for Nicholas and whether he has spent any nights in respite care or hospital recently, or they would cut our allowance. This is on top of the forms that I have to fill out each year or so regarding all the areas of his development. This form goes for pages and pages and on it I must mark what Nicholas can (and therefore by default, cannot) do. Then his paediatrician must also fill out a similar form and return it to me. If I do not get these forms back to Centrelink within 3 weeks of receiving them, they will cut our Allowance and he will lose his Health Care Card. Andrew, he is autistic. He is intellectually disabled. He may grow out of his epilepsy, but he will always be intellectually disabled and autistic. He will never live the life that most people do, he will never be able to do what his brothers do. He most likely will need to be cared for to some degree for the rest of his life. And as far as respite goes – what respite? We cannot leave him with anyone, he simply wouldn’t cope. (And it’s not as if the offers are flooding in, either.) I have spent one night away from him since he was born seven and a half years ago and then I was in hospital, after collapsing with exhaustion and falling face first onto the floor smashing my face and breaking my nose, my husband and children finding me unconscious in a pool of blood. I cannot understand why the government insists on me having to continue to fill out these forms and ring them to confirm that I am not ripping off the system. Each time I look at them and see the items that he is capable of doing, and see the huge number of things on the list that he cannot do, it is like my heart is being ripped out. I cry for days, but I keep going because my children need me.

The Government wastes so much money. Money that would pay for the Carer Allowance for a family of a disabled child, money that would pay for some respite care for parents with disabled children (and the siblings) who just never get a break, money that would pay for more services such as speech therapy, psychologists, occupational therapists. And yet, the government is worried about whether I have had respite from my child without letting them know. Do they really think that I have the time and the energy to try to think of ways to rip off the welfare system?

I will continue to fill out forms as I am asked. I will continue to ring when I am told. I will continue to be slapped in the face by my child’s disability and I will no doubt, continue to cry on occasion. And I will do this because it is what is best for my child and my family. But I cannot stay silent any longer. I am telling you this story in the hope that you find it all as unfair and frustrating as I do, and in the hope that should you choose to write or talk about it, people’s eyes will be opened. Not only to the struggles of families like mine, but also to yet another example of wasted resources and an uncaring and insensitive government.

I apologise for the length of this email and know that I have rambled, but thank you sincerely for taking the time to read it.

Yours truly,

Elizabeth

Is it just coincidence that this EXACT topic was discussed with Ayla's Speech Therapist and Physio this week? That it has also been a topic of conversation amongst friends 'in the know' this week? Maybe it's just that we all received these pointless reams of paperwork to complete this week.

YES! My daughter still has a disability....something tells me that this isn't going to change in my lifetime.

Build a Bridge? I think not....

Do you remember way back in the beginning of my very first blogs where I said that I wanted this to be a space for 'keeping it real'? 'It' being life as a special needs parent. Although I still have some ABR improvements to share with you all, I was reminded of my promise last week and feel like that reminder needs to be shared.

I am a forum member of a Yahoo forum specifically set up for parents of children with Cerebral Palsy in Australia. It's a place where we can ask questions, find out information, we can post information that we think might help someone or we can speak openly about the trials and tribulations of being one of these "CPecial Parents", without judgement. In other words....we're amongst friends that get us.

Last week, one of my CPecial Friends posted something on the forum that left us all close to tears (if not bawling). It was something that we have ALL felt at some time but have possibly never put words behind. The post was titled, "I Hate My Life". Well, SHIT! If that doesn't just say it all. Do I feel this right now? Well, no. All is well at the moment. Have I felt this before?..........you seriously have NO idea how many times.

So, in the interests of 'keeping it real' and truly sharing what it is like to be a Specials Needs parent, I have quoted below the forum post from my CPecial Friend, with permission, of course. I have removed all of the names of her family members for the sake of privacy.

Hi Cpecialfriends,

Does anybody else hate their life? I'm sick of getting up every morning and have nothing to look forward to. I'm really starting to resent what I have to do to take care of (my daughter) and also that (my husband) gets to get up and go to work most days and is doing what he wants to do. Its not so much the physical demands of (my daughter), its more the behavioural/emotional and seizures that really gets to me.

Do any of you feel like this and what do you do about it. I've been seeing a Psychologist for the past few mths as I haven't been coping with things, and we've been talking about my feelings about my life and how unfulfilled I'm feeling. I have always told myself that what I'm doing for (my daughter) is the most important thing to me and therefore that is the meaning in my life, but I've come to realise that deep down it isn't.

Do I try to find something more fulifilling which might mean less commitment to (my daughter), or do I just build a bridge and get over it. Am I entitled to find a life that makes me happy, or should I find some way of accepting that this is my life, there is nothing I can do about it and that I will hopefully find happiness in Heaven.

I'm sorry to burden you all with these thoughts/feelings at this early hour but its probabaly the only chance that I'll get to post, and I've been trying to post about it for a few days now.

I would really like to hear what you think even if you think its not what I want to hear.

CPecial Friend (you know who you are), thank you so much for posting your true thoughts and feelings and allowing us all to benefit from your honesty. I only hope that we (your fellow CPecial Friends) were able to help you too.

If you are the parent of a child with Cerebral Palsy (CP) and you live in Australia, feel free to drop by our forum sometime. We would love to meet you and your little ones and you never know, you just might find some kindred spirits.

ABR Therapy Improvement #3

So before Masterchef starts (I know I'm a sucker for cooking shows!), I thought I would put up another improvement. Here we go.....November 09:



The position that Ayla is supposed to be in is "Tailor" position....you know, sitting cross-legged. She can do that fine....unless you challenge her with a little shove! Notice how Ayla has kicked her legs out of Tailor position to maintain her balance? Pretty clever but really this is just another way the kids with CP overcompensate for their inability to sit completely independently and maintain it.

And now we see April 2010:



Ta Daaa! A quick shove and she has still maintained her Tailor Position!!!! Yay!....and now I am going to maintain my Tailor position on the couch for Masterchef....seeya.

ABR Therapy Improvement #2

Here comes another BIG improvement.....

This time we are looking at Ayla's abdominal strength and her ability to control her movement going from sitting to laying down on her back. This is Ayla in November 2009:



You can see in this photo that in order for Ayla to control the backwards movement as she is laid down, she kicks her legs up to balance her weight in an attempt to gain more control.

And in this photo....


She almost has a 6 pack!!! No, seriously.....look at those bulging Ab muscles. She is keeping her legs down and letting her abdominal muscles control the movement backwards. sigh What a champ.

Oh and by the way....today for lunch, Ayla happily ate last night's dinner. Told you it was yummy.

Love it when a plan comes together

Ok, so it wasn't really planned but it was a good title, right??

Whilst the Little Mrs (Ayla) was throwing her nightly tantrum tonight I managed to somewhat 'zone-out' and throw together a crazy yummy meal, so I thought I would share it. I would love to say that I took a photo....but I ate it before that even entered my mind. I really wanted a stir-fry tonight but it is becoming increasingly more clear that soy and I are not friends....not even for tamari. So, I have had to get a little creative.

Minty Apple and Pork Stir-fry

1 Pork fillet, thinly sliced
1 Granny smith apple, peeled and diced
2cm Ginger, peeled and cut into matchsticks
1 heaped tsp Tahini
½ tsp mild Curry powder
1 heaped tsp Honey
1 Lime
½ tsp Fennel seeds
¼ cup Chicken stock
Handful Mint leaves, roughly chopped
Stir-fry veges of your choice, julienned.

1. In a medium bowl mix together tahina, curry powder, honey and fennel seeds. Add pork slices and toss around until coated in ‘paste’.
2. Preheat Wok on high heat, add apple, ginger and coated pork and toss around until the pork is almost cooked. Add stock and onion and continue tossing until pork is cooked through.
3. Once pork is cooked through, add all the veges at once except any green leafies. Toss the veges and pork around until the veges begin to soften slightly. You can add a little more stock if you feel that it needs it but keep in mind that this stirfry is meant to be more dry than ‘floating’ in sauce.
4. When the veges are almost softened (but still crisp), toss through the mint leaves and green leafy veges until wilted.
5. Remove from heat and squeeze the juice from 1 lime all over the top of the stir-fry. TA DA!!!
Serve on its own or with rice or quinoa.

Try it....you won't be disappointed! Ayla didn't eat hers but that was because she was too busy crying and telling me it was bathtime. That's ok. The new rule in my house is if you don't eat your dinner you will definitely see it again in tomorrow's lunch :)

On a side note....her tantrums are much more subdued than they were a week ago and mainly because she is tired. Lots of crying and raising her voice but no kicking and thumping the ground yet....Happy days.

Stay tuned for another ABR improvement in the coming days.

ABR Therapy Improvement #1

Thought I had better start putting up some of our newest improvements from the last ABR workshop.

Each workshop Ayla is 'put through her paces' with a set of movements that are filmed and photographed. It's called the Video Session and the movements are exactly the same for every workshop so that the photographs/video taken can be compared with those taken from her previous workshop. This is just one of the ways that we can visually 'see' the changes that we (her parents/carers/therapists)help Ayla to create.

One of the movements involves sitting Ayla on the edge of a table with her legs dangling over the edge. From this we can get an idea of her stability in this position. The next step is to challenge her by taking her off balance to the side and also backwards. Don't worry! She's never left to freefall.....we always catch her. This is a snapshot of how Ayla coped with being challenged sideways in November 2009:


You can see in this photo that Ayla's entire body moves as one unit as she tries to save herself. She throws out her legs and arms and becomes rigid.

This is the same challenge photographed less than a week ago..... April 2010:


Here we can see that Ayla's trunk and limbs are more 'connected' in that, they work together better and she is better able to segment her movements to support her trunk. Much tidier!

As a side note....Ayla is slowly becoming more relaxed now that we are home. We have had some horrendous nights getting her to sleep. Our first night home was a little ugly. Last night was better and I am putting it out there for BLISS tonight :)

Chocolate for Dinner

Chocolate for dinner....and it's not even good.

I feel like I have just spent one and half hours somewhere back in my past....about 4 years ago. A time when Ayla was around 7 weeks old and used to cry and scream for hours every night. Seemingly for no reason. She didn't have any pain that we could see. She had a full tummy, a clean nappy and more love than she possibly could ever conceive of having but still, every night from about 4 in the afternoon she would kick, scream, cry, scratch and just generally thrash around for hours, until finally she fell asleep. I remember my midwife giving me this article by Aletha Solter to read around this time and it helped a lot. Especially the bit about not leaving a baby to cry alone. Just being there while she cried.

Tonight, Ayla took me right back there. The kicking, screaming, crying, scratching, thrashing and now add to that biting and pulling hair. All I could do was lay on the bed next to her. It's been a very sleepless few days in Sydney for our ABR workshop. She's been waking every 15 minutes, all night for 2 nights now and this afternoon I could feel myself on a knife edge....the very same knife edge I found myself on daily until Ayla starting sleeping through the night about 3 years ago.

At first I felt angry and frustrated at her response to bedtime. Then I started to cry because I just couldn't believe how far past exhaustion I was. And then Aletha's article popped up like a vision before my eyes, as a reminder of what Ayla needed from me tonight. Just to be there and listen until she had finished.

Aletha says,

Infants are extremely vulnerable, and have a considerable amount of emotional pain resulting from an accumulation of stressful experiences. Distress can be caused by a traumatic birth or difficulties after birth. Babies experience confusion as they attempt to understand the world, and they are easily frightened and overstimulated. In addition, they feel frustrated as they attempt to learn new skills and communicate. All of these result in emotional pain that is stored in the body.

Ayla is a long way from being an infant these days......or is she? Her inability to express her emotions and needs verbally would definitely leave her feeling vulnerable. And the amount of travelling around that we have done in the past 3 weeks has quite possibly left her feeling frightened and overstimulated .....frustrated again. Tonight was a MASSIVE release of pent up emotions lasting one and a half hours. I felt totally helpless as I lay there beside her while she, somewhat, took it out on me before finally falling into an exhausted (if restless) sleep. We can't wait to get home and stay there..... at least for a little while. So, if you don't see us out and about, don't panic, we're just getting ourselves grounded again.

But in the meantime................ it's chocolate for dinner.