i am ok...

Hi Guys, I know I have been absent from this space for a while. Life just took over. school holidays happened then three weeks ago on the last Friday of school holidays Luke had a Seizure.

It was scary. life has paused in a way since then. because it has been so busy with appointments and crazy commitments that this little blog just didn't seem as important. and I knew you would still be here when i came back.

some things I have just dropped and some things in the business of everything that has happened in the last three weeks has helped me to forget just how scared I was in those moments.

It did remind me once again that nothing REALLY matters.

only the ones you love.

Luke is fine now and he is doing well, in fact I would even go as far as saying that he had a positive outcome from his seizure and that is his repetitiveness has disappeared. I'm not saying that doesn't have issues still but this did in a strange instantaneous way mysteriously disappear.

All i can say is that the brain is one amazing muscle. such a weird thing to happen ( and some people have suggested that may be he just grew out of it but it was such a before and after thing that I can only hope that his brain was in someway making some connections that were not there before).

 

So I have completely dropped the toilet training thing because really why am I pushing him so hard, Id rather him just be happy and we have picked up OT and Speech therapy again.

words like pleasure and magic have completely taken over words like nourish because there have been so many moments when magic and pleasure have been the only things keeping me going and there has simply been no time to nourish myself.

 

So while we are on the topic of magical moments for myself there has been one really good thing happening here and that is that I have been making more soaps and I have been SELLING them  !!! I cannot tell you just how excited I am about selling something that is handmade creative yumminess!!! Very soon there will be some changes coming to this blog (yet another reason I have stayed away, hoping that things would be up and running by now) so that hopefully I can sell them online and you too will be able to enjoy how delicious and bubbly they are.

Progress

 We are having a lot of progress with this little cutie pie. We have been in touch with Autism SA and now have funding for Luke to get some more therapy(and hopefully some resources) so I am looking forward to seeing even more growth.

He is loving school and bringing home lots of new words, although he is finding it hard to settle his body again and this will be something we focus on in therapy.

He is beginning to take himself off to the toilet now. Over the weekend we had a lot of success with him taking himself and hopefully I can begin to see the light at the end of the toileting tunnel. I have been working on toileting for probably a good nine months now ( yeah I deserve a gold medal for all the washing I have done!) and though for most of that time he has been able to go to the toilet I recently realised that his biggest problem was that he isn't getting the signal to actually go. He has low muscle tone and this could have been affecting it. We now have some little com pics that say "poo coming" and "wee coming" so I am hoping that this has triggered a bit of the thought process.

All this at the same time as trying to control his food intake because he is still pooing about 3 times a day, it was six so we have progress.

His drawing has become quite good quite rapidly, he loves drawing animals and they actually look like what he says he is drawing! This morning he drew a pig with hay and a few weeks back he did an awesome drawing of some mice.

I thought I was going to have to keep him home sometimes from school but his energy has been really great, though he is napping in the bus on the way home. He is doing amazingly well considering everything!

Scrap It

Updated:

Luke has begun school with a beautiful happiness and a lot less dramas than I would have thought. But I do miss him terribly I was still drawing on the abundant love that he gives so freely and now he is at school it is easy for me to miss hugging him and tickling him and all of his smiles throughout the day.

He is in the very beginning stages of learning to read which is super scary to me, he loves all of his teachers, he loves catching the bus to and from school, he loves his new friends and he is doing very well.

We will be starting therapies back up very soon and I have some resources in mind to purchase, so things are looking good.

Lukes Journey

In these last few days of the year I thought it would be nice to share some of my favourite photos of Lukes year. Luke has had an amazing year of growth, you will see from the photos that he is an incredibly happy little guy. It is hard for me to fathom just how many building blocks we have put down this year. So many days I felt like we were taking steps backward, so many days there were new push pulls between us.

  There is no way that I could have worked him out yet. We have sensory issues still happening and it seems like nothing is working again, we are on the loop somewhere back at the beginning. But knowing what it is that bothers him is so helpful, even if I don't know what input he needs.

 Not so long ago he couldn't build a tower of four blocks, HA! I have won so many battles but I am well aware that we will have new ones this coming year I am sure that the growth next year will amaze me just as much as this year has.

 Having a diagnosis has been a good thing, it was a shock for Paul but I think my heart had know for quite some time, there were times I just couldn't put a word to what was wrong but it was always there.

Now in a way I think he doesn't have a disability he has special abilities rather like a super hero.

He has a beautiful ability to love. I feel incredibly connected to him. that is an understatement.

For me it is more like an amazing emotional gravitational pull.

 He includes others in this amazing love he gives, you cant help but love him. So many of our family are besotted with him. Of course he is a kid and has his moments just like any other kid, usually though he has a tantrum its because of a sensory issue etc.

 Now for some really special photos! Luke's Kindy gave us about 170 photos of Luke at kindy, here are four of my favourite.

 Lukey as pappa bear in Goldy locks and the three bears.

I cried when I read the report that the kindy gave the school when part of it said "Luke has a HUGE heart and has been loved, and loving, within this setting. He has built strong relationships with staff and peers and we will miss him terribly. He has a Happy and joyous disposition which will serve him will throughout his life. "

 I can only hope that he meets just as many beautiful people in this next chapter of his life and that he makes as many beautiful connections.

This last one has to be one of my absolute favourite photos of the year. SO SO CUTE!

The Best Snippits

Today Blake has gone on a spontaneous short holiday with Nanny. This little guy has been super happy with the slow pace that is happening here for the first Monday in our holidays.

He learnt how to do Hi fives " up high, down low, ohhh too slow". So cute!

I have a tone of spring cleaning to do around here while the pace is a little slower. It will be nice to freshen a few places up and organise a few things.

Also Luke's journey is moving along, he has been accepted into a special needs class. It will be a different school to Blake but we are all hoping it will be the best thing for Luke.  :)



Progress

The days here can be super intense. intense is the best word to describe the therapy that is happening with Luke. He requires a large amount of sensory activities throughout the day, there are days when of course it just doesn't happen I totally drop the ball or it happens in an organic way. There are days when I know he really needs me to focus on it and give it a lot of attention. There are so many days where I wish I had given him more.

 So i bet you are wondering what it is exactly that we do?? Well Luke is on a sensory diet and for him a lot of times that means doing sensory things that calm his system down. Luke can become very jerky throughout the day, like he cant control his movements. It is kind of like watching a small bird one second his head is looking one way and then the next it is the other way but it is almost like there was no movement in between because the movement was so fast. There are other times when he can become lethargic and we need to give his system a kick start. So when his system needs calming Luke tends to seek out things like rocking, banging his head against something, swinging, having his body being squished,  having deep pressure applied, chewing and most recently we have introduced body brushing and joint compression (aka bone bumping)

 The body brushing and bone bumping is to happen every two hours. Then he often wants something else like he wants me to rock him or squeeze him. it is really important that we are awear of the out come of each activity. Does it calm him or does it increase his alertness? Ultimately we are trying to get his system to be ready for other activities so that he can learn. It is far too hard for him to focus and concentrate when he is bouncing around.

So  once his body is in a state that can learn we are then working on: body strength, finger strength, fine motor skills, gross motor skills, puzzle work, block work, scissor work, hand wrining skills- drawing, sequential work- what comes next? Also language skills including concepts like same and different, boy and girl, doing words, size concepts, spacial concepts and using Key Word signing to help convey these messages.

This is what happens on the days when we are not seeing a doctor, pediatrician, gastoenerologist, occupational therapist, physio therapist, speech therapist, hydro therapist, opthalmologist or it is just a kindy day.

This is becoming a long post but I had it on my mind that I wanted to make a list of  Luke's progress because the days slip by so fast that sometimes it feels as though we are not making any progress.

A list of what Luke could not do at four but now can.

Dress himself

go to the toilet ( we are still having accidents but he can do it!)

sit cross legged on the floor

take more than two hand steps doing the wheelbarrow

 build a tower of more than 4 blocks

cut with scissors

draw a square

listen to a story

have his hair cut

answer a question

tell you something he did at kindy

go on a swing

open the car door

use a peg

draw a person

recognise any letters

recognise something is the same- he now does the sign

say a sentence more than 4-5 words

give you a hug with his arms and apply a bit of pressure

crab crawl

ask for help

understand the difference between boy and girl

know children at kindy's names

sit at mat time and listen (still could be a little better)

There a probably lots more small things that he has learnt too,but we are making progress!

One Amazing Day

We have been in a constant pull between the amazing accomplishments and the walls that we still need to push through.

 Everyday seems harder than the last and somehow easier. Can I muster the strength today? Is a question I dare not ask myself because that would mean seeing that there is no way I can possibly do it all. I say thank you a thousand times a day.

 We have some amazing people supporting us, though there are areas where I see I really need more or just a different kind. This little soul has so many lessons to teach me, so many ways to expand my heart. I am blessed.

 Everyday there is so much more to learn. Can I push the boundaries, can I find a way, what needs to be done now, what does he need now, will we ever make it and how will we ever know if we have.

 How is he going to live in a world where people are so unkind to each other. Where it is only the few who see that we are all connected, we are all the same even when it seems on the surface we are very different. 

My Amazing little guy strayed away from the group on his kindy excursion to the Adelaide fire station and got some very special treatment. They were the most amazing guys looking out for Luke and making special accommodations for him. About 30 seconds after this last photo was taken the fireman had to get Luke out of  there pretty quick smart because he was off on an emergency, very exciting!!

Today

Right now: I am staying positive.
I am right in the middle of toilet training Luke and we have had some major breakthroughs.
I am learning a lot about Sensory Processing Disorder, had you ever heard of this disorder cos I hadn't!
And while I am learning a lot about this disorder Luke is just learning and becoming a new little boy.
I am not pushing him at all while we are toilet training- we are not doing any of his OT or speech, there is enough learning going on.
He actually asked me to go to the toilet this morning and then did #2- we have success :)
We have had our accidents and bad moments but today feels amazing so I'm just going with it.
This last weekend we had a big cook up and I made enough meals for the rest of the week, yippee no cooking for me (unless I want to) so nice to have a break, we don't have takeaway where we live so that's not an option for busy times.
I am hoping that we get there.

Thoughts

We are officially in the first week of school holidays here and I the boys and I have had a lovely time playing, catching up on life around the home and taking a sigh of relief from all the stuff going on with Luke. Apart from spending some time each day doing a bit of 'homework' with Luke I have been able to have a rest from the thoughts surrounding the issues with Luke and now that I have had some breathing space there are many things that were talked about during the last ten weeks that are circling around my mind.

During this break from 'Luke thoughts' there has been alot of thinking about our journey to a simpler life, there is always a lot of talk about it around here in some form or another from the extreme dreams that I am totally not ready for like owning a farm to finally getting us some chickens to spending more time bush walking and expanding our veggie beds. Lately there has also been a lot of talk about the hierarchy of food that we buy. I already have my own system but I recently bumped into the zero waste home and discovered that there is more that I could be adding to my list. Here is the order that I usually purchase items in:

1.Local and organic

2.Local or Organic (depending)

3.Then Brand name- hopefully an Australian brand

4.Then Home brand

We are still buying from leading supermarkets, which I am not super happy about but has really been our only option at this point with Luke. Because taking him shopping is an undertaking within itself and it is simply impossible to take him to more than one shop. So we have been doing the best that we could but on the horizon is the thought that he will be at school soon and this will free up more time for me. And although we live quite a way from where we could get what I really want the time may be soon there to go further. Anyway I do worry that at some point these supermarkets will simply only sell there own brand products and we wont have too much choice because we have voted with our dollars  to buy the cheapest option for too long.  Not to mention that in Woolworth's especially I notice that they are not putting other Organic brands on the shelves to meet demand but are putting there own organic home brand products.

But the next option to add into this is no packaging. It now seems obvious that the energy put into the packaging could well be more than put into the product itself and then the packaging goes straight into our landfill or worse still into natural environments killing it. My six year old is already aware of this through movies like happy feet and finding nemo as well as wildlife shows and is constantly ask questions relating to it. I have been questioning where I can get all of the above options without having to go to a gazzillon different places. I realise that I am going to have to put some systems into place if I want to not be bringing in more packaging.Yesterday I spent some time sewing up some veggie bags so I no longer have to use plastic so the question is: Where can I get Organic Local Not packaged goods mostly in one place????

Back to Luke and those circling thoughts...Luke is in a position where we need a group of people to help him on his way and to make a diagnosis, not just one person will be able to give this. But Luke has more than one issue, he is a whole being and has a whole group of issues and one thing may be able to help connect those dots for him so that the other dots can be connected easily. Luke is at an amazing Kindy with a fantastic team who have in the last few weeks fought tooth and nail for him. And I am so extremely thankful that they have done that for him, he needs it. He received 6 hours of support! Amazing! But what completely baffles me is that he only received this after a fight, after being firm, after tantrums were thrown. With other children being completely left by the wayside.

Is that not so ridiculous!

The government completely refuses to fund help for these children just because there problems seem small.

Although the government will end up paying for these children ten fold in the future. Are we not supposed to be fixing the problem not just waiting to patch it up later.

Not only that the system is so screwed that if you choose to go private and pay a whole pile of money you will no longer receive public support- even if your child really needs both or even if this would help your child get there faster and therefore relive the problem sooner.

Now you will have to choose between the care that you get in our instance we are choosing some public and some private. Private can become super expensive especially if you need more that one type of person. I would love to switch Luke over to private speech because public speech is simply sparse in that you might only see them twice in 10 weeks but we cant afford to put one more person on the private list.

We are the lucky ones, we can afford this although we will take a hit we will be ok. Luke will most probably be diagnosed with a developmental delay or a  form of mild autism but what if you were dealing with more than that. How on earth do you pay for the help you need?????

Then you do pay for the help you need and you get doctors who are over worked who are slotting you in amongst the 50 other patients they are seeing today.

I am giving myself a headache.

To me the Luke thing and the Food thing are the same THING.

Because I could take an environmental standpoint or I could take a political standpoint and may be these ways would get me further. But I am not a fighter! I see others taking that route and it doesn't inspire me. 

When are humans going to stop doing things with only money in there mind.

When are they going to stop thinking in dollars.

The only lens I can look through at this is love.

If we all just started to care about each other, it would be so different.

When you care you do the right thing, when you put love in you make love come back to you.

We made it!

We made it through super crazy appointment week! Yippee! Although I was super tired by the end and only had one free day on the weekend Paul was determined for us all to do a hike. So we did a local 4km bush walk to get us going since we hadn't hiked in quite a while. Luke walked almost all the way, Blake led the way and thought it was super easy and I enjoyed looking at my feet for 4kms as I always do on our bush walks otherwise I trip and fall and it is so not good falling off the edge of a cliff!

 Can I tell you that I was POOPED! Then we all got colds. 

But anyway now that the craziness is all over we should make it into a smother rhythm now. Appointments will be more spread out even though we still need to add in a physiotherapist and a gastroenterologist (if thats even how its spelt) cos yup he also has poo problems that my Doc cant sort out. 

 The OT has been really great, she thinks Luke could catch up in a much shorter time frame than I imagined possible. We have speech homework and OT homework and are probably gonna have to get our hands on a few 'tools' to help Luke.This week I am going to be doing a toy clean out to get ready for Easter holidays and sort out the stuff that will help Luke before I buy him a few new things like a kids size fitness ball and some fancy pegs both to help his muscles. 

Things are looking hopeful.

Right now we cant take Luke into many public places so I will know when we have 'caught up' when we can take Luke out for pizza! That would be amazing!

You know what else would be amazing....some posts here not about Luke. Seriously missing crafting!!

At my own pace.

Today I am reminding myself to take things at my own pace. 

Next week Luke has 5 appointments in 5 days! Its going to be a busy week and I am nervous and worried even though I know that I have no reason to be. It is going to be mentally very draining. Each new person wants to know exactly what has happened from birth till now and they also want to know what the person before has offered, what assessment has been made and what has been done. It will be tough, I'm not great at remembering details.

 (on my table, a chocolaty milky drink and a home-made banana muffin)

We will have two, possibly three assessments one of them we are half way through.

We also have a haircut this weekend which can still be tricky.

We will make it, I will have a good cook up on Sunday so that I don't have to cook so much this week.

(in my kitchen- roasted pumpkin for pumpkin soup)

 I will remember that it doesn't matter what little amount of cleaning gets done or how big the washing piles get all that matters is that we are all happy and all feel loved. That we are together.

(in my garden- Blake has his own little green house going)

There could be some amazing results from this next week. Results that could be the beginning of changing our lives for the better. I will take what I can at my own pace. The rest will be what it will be.