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.

Key Words

Today Ive been sick,  nothing too much I'll be better tomorrow. But since I have spent the day in bed I have been worrying about Luke going to school. I know that he will be fine, but its all the little things, I need to prepare him more - I am yet to do the little things like go and get him a school uniform  and it freaks me out that I'm not prepared

 We really need to brush up on his Key Word signing. Especially while blake is home because there is not a lot of calm at the moment. Blake tends to wind or whip Luke up and Luke just isnt getting a break from it. On the positive side there is a lot of fun happening and a lot of laughter.When I dont use the key word signing I can ask luke to do something four or five times and he won't "get it", but as soon as I use a sign it's like his little brain snaps into gear. Luke can also be very repetitive at times and when I use a sign in response to him he will stop repeating- like he finally got the answer.

So today I though I would share a link with you that you might find fun. Blake loves using the Key word signing, its like a secret language to him. You can simply type in a word on sign.com.au and up it comes. May be you too can have a little secret word with you child or with your partner. :)

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!