The Coming to terms..

This morning at a meeting with Eloise’s educator at our local Early Intervention Centre, I realised something.

I still havent come to terms with Eloise’s Autism. 

The moment Eloise turned 3 just a few days ago, I felt mounting pressure at the fact that in just 2 years, Eloise will have to be prepared.. for school.

Late last year, I made the decision to keep Eloise at daycare, instead of moving on to a Pre-school. The daycare centre has a pre-school programme, so I thought keeping her in a familiar environment will help her transition to the pre-school programme. She also has a support worker employed to help with Eloise’s care.

The childcare centre have apparently decided, without involving me in the decision, that Eloise will not be going into the pre-school room until next year.

It hit me.

Eloise is different.

But in my mind, the only thing that tells me, is that it is infact more important for Eloise to be moving up to the Pre-school room.

Sure, the moment she moves up there she will have a meltdown. She will sit in the corner all day, line up toys, refuse to participate, and be extremely upset.

But what will happen in 12 months time?

She will have a meltdown. She will sit in the corner all day, line up toys, refuse to participate, and be extremely upset.

Her Autism isn’t going away any time soon.

In a conversation with one of the centre’s office staff, the moment I mouthed the words “special school” tears started streaming down my face.

Am I so discriminative that I can’t handle the thought of Eloise going to a special school?

And again, at a meeting with Eloise’s educator at the local Early Intervention Centre. The moment I mouthed the words “special school” tears started streaming down my face.

From the moment she was born, I wanted to send her to a private school. I was even considering having her baptised catholic (she is baptised Christian) so she would get into the best schools in our area. There’s not much point now. Even if Eloise doesnt need to go to a special school, she will most probably be needing the extra support of a special class.

I don’t know why it bothers me. It just does. I thought I had let go of the dreams I had for her, and created new ones. I suppose I hadn’t caught up to Kindergarten yet.

Out of Reach…

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I don’t have much family. I don’t have my parents in my life due to a difficult childhood.
Even though I don’t have a big family, I feel that family is the most important thing in this world.
I want to have more kids. I want more people around the dinner table. I want to share christmas with a brood of screaming children. I want to play cricket in the backyard. I want to watch my kids fight and argue with each other, and teach them to be tolerant of others. I want to play eye-spy with a car full of children on holidays. I want to make a whole lot of beds in the morning. I want my kids to have “hand-me-downs” from one another. I want to be a busy mum. I want my daughter to be a sibling. To have someone to love other than mum and dad. To have a partner in crime, someone to blame. Someone to look over and let into her bed when theyve had a nightmare. I want her to know what its like to be a sister. I want a whole row of toothbrushes in the bathroom. I want a stampede of kids running through the door after school, with their dirty shoes and bags flung all over the floor.

Dreams are always crushed.

We have recently learnt that we cannot have any more children.

“Here’s the thing. None of us know what we’ll do or how we’ll react when life lobs lemons at us like hand grenades.”

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So I’ve been reading a lot of books about Autism in the past week or so. I read half of “All I can Handle, I’m no Mother Teresa (A life raising three daughters with Autism)”- Kim Stagliano last night. I have to say the book was a little bit everywhere, but it did give me an insight into life with Autistic children.

I have reserved a stack of books at the local library. It seems everywhere I read, I see references to the dangers of vaccines. I loaned the book “The Age Of Autism”, and after reading the introduction I threw it in the “read” pile, as I wasn’t interested in reading about the controversy of vaccines. There couldn’t REALLY be mercury in vaccines, could there? Reading “All I can Handle” indirectly exposed me to the argument of Vaccines causing autism. I have made the decision to read “The Age of Autism” and possibly “Evidence of Harm” if i can get my hands on it. I know it’s a very controversial topic, but please take a look at the graphs in this link. The first graph shows Autism rates vs. MMR and measles vaccinations 1988-1995. The trend is quite confronting, as I have only been exposed to the media desperate to dissipate any claims of harm by vaccines. From what I have read, it seems the evidence of Vaccines causing harm to children is there, but not widely advertised by the media. Another example of the biased media.

http://childhealthsafety.wordpress.com/2009/06/03/japvaxautism/

We had another speech pathology appointment today. We haven’t started our Occupational Therapy yet because we are waiting for the funding to come through. When we first arrived Eloise was very closed up and having a hard time with activities. When the S/T turned the touch computer on to play the Wiggles game, she refused to come over and press any buttons but instead lied with her stomach on the table, screaming on and off. She also made a lot of funny faces, like a REALLY freaky, over the top ear to ear grin. Not because she was happy, but its the face she makes when she’s having trouble dealing with a situation. The S/T tried to pick her up and take her over to the computer, a mere 1.5metres away, but Eloise tantrummed and dropped to the ground, having a meltdown. We then proceeded to play the game ourselves until we finished. She then began jumping around the room (she does this ALL the time at home) so Jackie went and got a giant pillow (they were out of trampolines) to jump on. Immediately after jumping Eloise was reachable, co-operative and actually “home”. It was amazing! Now I am even more excited about starting OT, and getting Eloise’s Sensory “Recipe” which they call it to help with her sensory problems. The S/P and I were both amazed by how well she reacted to the jumping exercise! She just needed some physical stimulation to get her back into the sensory “sweet” spot for just a little while.

Eloise is under-sensitive to movement and seeks out movement by: Jumping, spinning, playing rough and tumble games, running back and forth, running away

Eloise is under-sensitive to touch and seeks it out by: Wanting long hugs, wrapping herself in blankets, squeezing herself into tight places, lying flat on the floor, putting objects in her mouth, rarely crying when she gets hurt, closing herself in the closet

Eloise is under-sensitive to sound: She doesn’t appear to hear what people say, she likes toys that make certain sounds

Eloise is over-sensitive to sound: Cries/screams when people sing

Eloise is under-sensitive to sight and seeks it out by: Flicking the lights on and off, watching repetitive movements (closing/opening bin over and over for example), lining things up

The past few weeks it has appeared that Eloise has become a little worse. Her behaviours and sensory seeking have been more apparent and it has been more difficult to calm her down. The last 2 days Eloise has cried/screamed/tantrummed for over 4-5hours per day.

On thursday we’re travelling to finalize the funding, which will open up therapy options, and help with equipment costs. It will be a relief to get it all sorted out finally!

We are pretty sure this month’s fertility treatments hasn’t worked unfortunately.

Some time to re-group and an amazing weekend

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So here we are, our little family of 3, learning to live with the challenges of Autism.

It seems at the moment that Eloise’s behaviour just keeps becoming more challenging every day. And then, when you least expect it, Eloise will have a good day. These days are few and far between, but all the more cherished.

On Saturday we went to the park, and it was just a brilliant day. We took a little picnic with us and ate while Eloise played. it was great to watch her feeling like a normal child. We left to get icecream, without a fuss. When she understood that she was getting icecream leaving the park didnt matter so much anymore! She had a rainbow icecream from the park cafe and got into the car without a care in the world. We went for a drive and she ate her icecream, and fell asleep. It was a magical day.

In contrast, the day before we couldnt get her in the car without what felt like breaking her arms. It takes so much strength to get her in the car! We went to her early learning group and Eloise stood/lied on the floor for quite a while before coming inside the room. She moved quickly from one thing to another, without paying any attention to the activity. She took items from one activity and put them with the other, where she felt they should be. Then when it was time to pack up she tantrummed. We then had group time with a book, and Eloise spent most of this time on the other side of the room bent over a table crying/screaming until we eventually coaxed her to join in. She then kept trying to take the book off the teacher, and refused to sit on her mat for more than 3 seconds, then back to the table on the other side of the room. She was unhappy. Then it was music time, and she screamed in the other side of the room the whole time the music was playing. When Michael tried to calm her down I tried to get her interested by pointing my fingers (it was the song “can you point your fingers and do the twist” by the wiggles) which sent her over the edge! We then had outside time and she spent most of her time standing inside the cubby house. We did have some time where she was playing with the toy lawn mower and climing the jungle gym which was nice. It was a hard day. When we got home I was extremely stressed, because of the horrific day we had had and because our house was so unorganised, as we were re-organising Eloise’s hundred’s upon hundred’s of toys still and they were everywhere.

Michael sent me to have some time to myself which was nice. I had a coffee and something to eat, and read a magazine. I came back and Michael had sorted all the toys out and was vaccuuming which was really nice of him.

To have such a lovely weekend was just what we needed. I have been doing some more reading about living with Autism. Its alot to take in.

We also began using visuals. They arent quite organised to be of great use a the moment, as all the different types of visuals are all on the same board. When I have a minute I will make some choice boards, and a routine sheet so I can use the visuals to show Eloise what our daily routine will be. This will help stop Eloise from feeling she is out of control. I’m hoping we will see the Occupational Therapist soon so we can work out how to manage her Sensory seeking behaviours.

Speech Pathology and an Information Overload!!

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We received Eloise’s written Autism assessment in the mail yesterday, and with it a HUGE amount of photocopies to go through! Its a lot to take in!

Today I’ve been taking photos of places we go, i.e preschool, KEIS early intervention centre, nan and pops house, park, supermarket etc so we can create a weekly planner, with pictures of the main things that we will be doing on that day.

I’ve also been taking photos of different foods Eloise eats, so we can start using a visual choice board to hopefully help Eloise communicate what food she wants a little better.

We also need to re-organise her toys into separate containers so we can create a choice board for toys, instead of Eloise being able to get her hands on whatever toys she wants. This will help with learning communication skills, learning to make a choice, pack the toy up and “finished” by putting the visual of the particular toy in the “finished” box.

I have been reading about toilet training, and am hoping I will be able to create some visuals to get this started sometime after we have the other visuals implemented.

The speech pathologist was using “chat boards” today with Eloise which I noticed Eloise responded really well. A chat board is a piece of laminated paper with different actions and expressions that could be used for a certain game. Today we used the blocks chat board, where Jackie was teaching Eloise to point at the action she wanted to do in order to get more blocks. Eloise eventually stopped tantrumming so much and pointed to the “build it up” one to get more blocks and said “be be up”. Eloise did not go well with turn taking, but we will be working on this by ignoring the tantrum and continuing with the activity until it is again Eloise’s turn. If she is still tantrumming, asking “finished”? with the hand sign.

I haven’t even started the paperwork for the funding, I only got my hands on the application today.

Eloise also got to use an i-pad today for the first time. She used it well for a first time although she seemed to be pressing the same sequence of objects. We are hoping her i-pad skills will improve, and the speech pathologist also said she will be trialling the i-pod touch with her as well, as it’s a bit sturdier but on the other hand the screen is much smaller. hopefully she will react well with one of them so we can implement it into our life to assist with communication, and help her learn.

We are hoping to organise a session that Michael can attend at the end of the week to talk about discipline. Which we are finding a challenge.

Eloise will also hopefully be starting Occupational Therapy once a fortnight. This will help with Eloise’s sensory needs.

We are looking forward to a reduction in her tantrums! At the moment it seems she is feeling frustrated a lot of the day. It’s really difficult to be on the receiving end of the tantrums, and hard to control your anger as its very frustrating! We hold our breath a lot!

Eloise has started constantly walking backwards with her face to the ceiling, jumping up and down instead of walking, and hiding in her dark wardrobe for LONG intervals, and when I discover her there she shuts the door on me.

All in all we are doing well with the challenges we face, there’s a lot to organise and many many avenues of therapy ahead! Looking forward to it!

A BIG Suprise!!

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It has been a big week! We just came home from a week in Sydney Children’s Hospital at Randwick and have had some HUGE news.

Firstly, Eloise had her Autism assessment at ASPECT Australia and unfortunately was diagnosed with autism. I suppose this is the point where we should fall apart, but we are choosing to look at the diagnosis as a positive. Without the diagnosis of autism she would still be Autistic, but without the diagnosis nowhere to go from there, no funding for therapy, no chance for improvement. But with the early Diagnosis of autism Eloise has the best chance to close the gap before the “magical age of 5”.

After Eloise’s assessment Vicky, the assessor talked to me about not only the negatives we have gained from the assessment, but the positive things she saw in Eloise too. Eloise does have pretend play skills, although repetitive in its nature, are a huge benefit to Eloise and her development. She was also very adamant about how ‘visual’ Eloise is, which a lot of Autistic children are. This gives us a HUGE advantage, and opens up opportunities to communicate through visual aids, even through an I-pad, as Vicky was telling me. I-pads have hundreds of apps for Autistic children, and are used as a communication board for many young autistic children. We are very excited at this, as at present its very difficult to find out what Eloise wants, which is the cause for many tantrums! It would be great for her to be able to communicate in a way that doesn’t make her seem so different from other children.

As for Eloise’s dermatology appointment, Dr. Wargon is extremely happy with the progress of Eloise’s haemangioma. She has even said that she no longer thinks Eloise will need surgery (just 6 months ago the skin was very flappy, and she said without surgery would hang over Eloise’s lip) but just a little Laser treatment the year before school to hurry the process along a little. We are still using the Timoptol, which is a new treatment in the form of an eye drop actually, that’s applied to the haemangioma. We have been using it for 6 months and will be using it for the forseeable future.

I’m sure some people have seen the huge media coverage about the “new” treatment for haemangiomas called Propanalol. Eloise was actually one of the first in Australia to use the drug for haemangioma. Now its the main treatment for haemangioma.

The Gastroenterologist thinks that Eloise’s gastro issues are related to her Autism, as a lot of her symptoms are indicative of this.

Eloise is still being weaned from her Epilim, with no seizures so far.

Eloise’s DNA test came back with no abnormalities visible. This test skims over all pieces of DNA, looking for a piece missing, broken or doubled. Unfortunately this technology cannot look within each piece of DNA, to find the gene responsible. But this technology isn’t far away!

The Geneticist has taken my blood, Eloise’s blood, and Michael’s blood will be sent down from home to be saved for the near future. She is very excited that technologies have come forward so far in recent months and they are close to a breakthrough, giving us the opportunity to use new technology to find the gene responsible for Eloise’s NEHI. She said definitely in the next 1-5 years they will have the technology available, and they are looking for such cases as Eloise to use the testing on. They will also be able to offer us gene therapy, which involves testing embryos before transferring via IVF. They are offering this to us at no charge!

Now is the time to sit down, because we have some amazing news.

Eloise was seen by physio, and had a repeat exercise test from 6 months ago. 6 months ago her resting sats were 92, and desats down to 86 when running around. Just 6 months later, Eloise’s resting sats are 98-99, and down to 95 (94 for just a tiny tiny moment) when running around! After this I was SURE Eloise would be taken off oxygen completely, and began telling my new friends that I met at the hospital that also live in Wagga. Hours later we received the news that… (suspense..)

ELOISE DOESNT NEED HER OXYGEN ANYMORE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The specialists were not expecting this for quite a few years to come, and it is just AMAZING how far Eloise has come in the last 6 months! She still has quite a high respiratory rate, retractions and coughs quite a lot without the oxygen, but her sats are just beautiful in room air! Eloise will still need oxygen when she is unwell, and she still has NEHI so her lungs aren’t functioning as normal, which is easily noticed from watching her breathe, but she no longer needs oxygen! In the last 6 months she has come forward in leaps and bounds! We are shocked and amazed, and so excited about putting this time of our lives behind us, and looking to our future. And it looks amazingly bright!

Daddy’s Birthday and a Great day at the Gardens…

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Today was Michael’s 25th Birthday. We didn’t have much money but we had a great day! We had a picnic at the Botanical Gardens with a birthday cake, complete with candles! We played a little “cricket” and daddy and Eloise played chasies!

After lunch and a little play Eloise went back on her oxygen for a little bit and we went to visit the animals, she was having such a great time feeding all the different animals that we let her out of her pram and off her oxygen again so she could explore. She had such a wonderful time, even though she became quite tired quickly.

Happy Birthday to my amazing Husband!

Beautiful Pulse Oximetry Results!

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So Wednesday night Eloise had an overnight pulse oximetry done at home. Although we use our own Nellcor pulse ox, it doesnt print overnight results on a graph/chart like the one from the hospital. The Results were great, only 0.4% of the night spent under 90%!!! 53.5% spent between 90-95 (steadily at 93), and the rest in OVER 95! amazing! Her Heart rate was good also, Between 80 and 90 bpm 80% of the night.

We will have an excercise oximetry done next week, which im eager for! Last time her resp team were a little dissapointed by her results as they werent as great as they had expected, but i’m really hoping she has improved since then, and will be allowed a little time off the oxygen.

I currently allow Eloise to have one 30 minute interval off the oxygen per day, to play freely without the cord. The resp team were adamant about keeping it on especially when excercising, and that she can have it off when doing quiet activities like watching tv of having a bath. But whats the point? It doesnt bother her when shes watching tv, she wants the darn thing off so she can run free! So ive basically taken their instructions and turned it on its head. I wonder how the team will respond to my “customising” of their instructions.

Its my gorgeous husband’s birthday tomorrow, and I havent bought him anything but a card. Our finances are so stretched at the moment we have had to ask for help from charities to even get to Sydney.

Thankyou to Country Hope, St Vincent De Paul, and Commonwealth Carers association.

It is hard to admit to recieving help. From the exterior i’m sure people have a hard time understanding how we can be in such dire trouble from the exterior. We have a relatively nice house, drive a relatively nice car, and my husband works 40-50hrs per week. But to put it into perspective, we take out loans to pay for medical expenses. My husbands work has cut all overtime. Michael had surgery on the 30th June, and had to take 2 weeks off work. Then I had a test 11th July- in Sydney, 6 hours away. Then I had more tests at home, and more tests and procedures in Sydney, 5th August. On monday we will be going back to Sydney for the week for Eloise’s admission. It feels like we have been playing a balancing act for some time now. And were finally starting to fall.

For anyone who is new to Eloise’s Story, Check out Eloise’s Story so far.

Things that go bump in the night…

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Eloise LOVES dressing up at the moment. Her favourite is as a “butterfly” (fairy). She bugs me and bugs me to put her “butterflies” on (her fairy wings). She quite often walks around the house in her play shoes, her jewels and says “smile!” (because she wants me to take a photo of her!) Its just so precious!!

Eloise is being admitted to Randwick children’s Hospital in Sydney for a multidisciplinary review on monday, until friday evening. Sydney is over 6 hours away, and especially long when driving alone with a 2 year old who loves to undo her seatbelt! This will be the third time in the space of a month that we have been to sydney.

Unluckily My first Clomid cycle starts while ill be in Sydney, so Ill be having hot flashes, bloated, moody, nausea and hopefully not blurred vision! The things we do to complete our families..

The past few nights Eloise has been having very disrupted sleep. She awakes frantic, screaming and terrified. She runs down the hallway as quick as she can and I put her into bed, and she cries and cries. I wish I knew what was happening! Its very unnerving hearing your 2 year old screaming terrified during the night.

Shopping with a toddler…

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So I go grocery shopping with Eloise, I wasnt feeling well so decided to pay for what i had and leave. on the way back to the car we call in to the health food shop. whilst i converse with the shop assistant, eloise proceeds to throw one whole dozen eggs on the floor. So for the next 15 minutes, the shop assistant and I crawl around on our hands and knees, and if anyone knows eggs, they are IMPOSSIBLE to scoop up with paper towel. so all in all, just a regular outing with a toddler!