So this week has been the first week of the 2 week Easter holidays.
Other than the fact SB has taken this long to realise that We aren’t actually going on holiday it’s been relatively quiet!
I think we are now used to the routine of MO not coping with holidays and so we try not to plan much. It just means we don’t stress if things don’t go to plan.
The first half of this week MO didn’t want to go outside, he didn’t want to go in the garden, go to the park nothing. You could see that he was getting more and more frustrated, he was getting more and more fidgety, his fuse was short but he was coping ok-ish. I mean today he has been clenching his whole body and his vein on his forehead has been popping but he has only hit out a few times. Don’t get me wrong I do not condone him hitting and he gets punished in a suitable fashion, but to only lash out a few times today after a week of routine change is just amazing!
I got the kinetic sand kit out and for hours on end that’s what his done this week. The others went about their own business and MO carried on using the magic sand! We haven’t got a lot of the stuff but he did the best he could do, with the tools he had.
We are also currently fundraising for MO to get his own sensory equipment and this is going really well. (Please click here to donate- http://mk2.gofund.me/equipment-for-my-children?rcid=7e9873141e774b498c589ec3a1efe6c8), We would like sensory equipment at home just due to the fact he is getting worse, we want to just be able to say let’s go into your corner, let’s calm you down. So far due to valuable donations and shares our gofund me page has collected we hit 10% of our goal already either through the page or through cash which will all go in the same pot. Also due to our gofund me page a new company wetogethr (https://www.wetogethr.org/) has kindly started working with us to get some equipment and we are their first cause (with their help we have actually got 50% of our goal)! It’s amazing that they chose our gofund me page over all the others and I am truly humbled that they believe the sensory equipment will help our lives. some of our wish list has slightly changed but generally it’s just as there are better suited items for MO after talking through his needs with a company that wetogethr has been talking with. It was so interesting to hear that MO does certain things due to stimulation and what equipment would 1- work better at home and 2- give us more for our money which is obviously a bonus.
The gofund me page isn’t just for MO. It is also for BBG and a lot of the equipment is highly recommended for her as well. Although the consultants are looking more geneticwise apparently a lot of the conditions are based in the brain and therefore any sensory stimulation will make the brain work better. There is a lot more science behind it but basically along with physiotherapy, sensory play is just as beneficial. I have to admit before BBG I would have been sceptical with about half the things I have researched but now I am reading into it it’s all making so much more sense. Actually seeing it in practice does help a lot though.
BBG still doesn’t roll however on a good day can easily get onto her side now, it’s quite interesting to watch, she doesn’t use her core to move but her arms and legs swing over and it’s the strength and weight in her limbs that actually move her, I really believe rolling can’t be too far away! We are also testing her sitting by herself and she is no where nearer doing this however her arms do try and hold your legs to keep her upright, so her core still has no strength but my hope is we will strengthen her limbs to help her. I have to admit much like the sensory knowledge I also never realised how important strength in your core is. I didn’t realise how much it helped in moving and everything, really I guess it makes sense when you think about it but again, why would you ever think about it unless you have to? The other thing is BBG still isn’t swallowing anything thicker then puree and even that it is hit and miss. Also, when she proper laughs, that laugh that comes right from deep inside, it causes her to get extremely tired and quickly. It happened at mums house and she couldn’t figure out how to gain her strength back to get her breathing back to normal. He little chest rising and falling strangely and making his gasp/grunting noise. Her face was panicked and my mum although outwardly showed the right amount of concern you could tell deep down she was worried big time, she has never seen this, no one has and it sucks as you realise such a small insignificant thing we all take for granted causes my daughter such distress.
In total since Thursday I have spent around 5 hours either on the phone to people discussing test results or chasing hospitals or at appointments, it doesn’t sound a lot but when you think this week only had one appointment so is a quiet week for us you can appreciate what our busy weeks look like. We did get a call yesterday to say our local hospital want to see us for an update on Tuesday morning. So Dad won’t go to this appointment and will stay home with the big kids due to it being the school holidays.
On our appointment this week we found out MO has mild pectus excavatum, thankfully it won’t affect him day to day and will just mean he gets breathless a little quicker then his peers but that is something we can handle. It is also something we will pass onto the consultants just incase it helps them diagnose BBG.
Yesterday we went to the woods with the cousins. It was fantastic to see all of them go off together and really explore and play together brilliantly. Today dad took the big kids to the park so I could catch up on washing and relax a little. It’s been lovely to enjoy the weather especially with MO finally letting us take him outside.
Last night I also met up with some good friends and had a laugh. Don’t get me wrong dad and I have a laugh but there’s something about meeting up with friends that really energises you. Dad and I have so much on our shoulders neither of us truly relax at the moment. So those couple of hours away were fantastic. I will admit I had a little tear on my way home realising how stressed I am, how anxious I am and how much I don’t even recognise myself but those couple of hours I was back to me. It’s hard to explain. Tonight dad is out with his camera taking pictures to relax and in a couple of weekends we will have his friends over for his birthday BBQ and we can all relax and unwind. It’s nice to be away from reality sometimes.
These holidays are a lot less stressful then I thought they would be, but our understanding and strategies of coping with autism and MOs violent outbursts have changed, making sure we say things in a certain way, watching for clues that he is about to go from 0-100 and all of these things help a lot! And I honestly think not having solid plans and going with MOs flow has definitely helped instead of making him do something he really doesn’t want to do. It is going to be out of routine no matter if we make plans or not I may as well help the situation by letting him decide if he feels up to the busy zoo or the busy beach etc. Some days a busy zoo is a definite no no and other days it’s a yes but we go for opening and go as soon as it’s busy. Everyday I learn a new thing about my boy, and everyday it makes me realise how special and unique he is.