World autism awareness day

So today is Autism awareness day. I’m glad there is a day designated for Autism and where people stop being judgemental and learn about the condition. Although today is autism awareness day in our house it is autism day every day. Everyday we are learning new things, everyday we are learning more about how MOs mind works. 

It’s crazy to think I’ve thought MO has had autism since he was 18/20months and he is now 5 and yet everyday I learn a new thing. Recently his self harm has increased and I learnt if he is anxious about something he nibbles at a spot on his wrist, he will do this either until it turns red or until it is bleeding, in fact sometimes I swear he bites it right off! When he is angry/frustrated or confused MO will bash his head, slight annoyance equals him slapping his head, major annoyance means slamming his head on surfaces. Thankfully he has a high pain threshold so I think it can’t hurt that badly but witnessing it hurts my heart. 

I’m still learning the way he takes everything so literal. This morning it was Asking him to sit still in the car so I could buckle him up. I did the buckle and got in my seat, all hell broke out, he thought I hadn’t buckled him and after calming him down I realised he thought the buckle somehow will attach itself to him, we do this process daily yet a slight change of wording made him freak out.

This week at school he has been so unsettled, he has made the class evacuate once and has lashed out lots. Thursday we went up to do an emergency revision of his one plan. It went so well I hope the new steps will help him. I don’t know what’s causing him to freak out but something is and hopefully the Easter break will help him calm down, relax and get more energy for when he returns to school. Hopefully a new term is a new MO! 

It is extremely hard sometimes to raise MO physically, and emotionally but I do know I wouldn’t change his cheekiness. Take his school Easter disco, apparently he was really busting a move and doing the splits! Then yesterday again out comes the funky dance moves when MO was at a party, ok the party was a superhero party and my Dino boy went as a dinosaur but he didn’t care. 

Please excuse the lack of top, he does have shorts and socks on, MO was boiling but just had to try the colourful cake!

As for BBG we had an ultrasound at GOSH and were told BBG has water around the brain however this wasn’t there in the December scan. Their not sure where it came from or why it’s there so have suggested to us BBG will probably go under a general anaesthetic for an MRI but he can’t say for certain as that’s BBGs consultants job to decide. 

So although we left GoSH with no answers we left with yet another puzzle piece, hopefully one of these new puzzle pieces will click into place and a diagnosis will be made. She still isn’t rolling or trying to sit up, she still slams her arms back when playing and does get exhausted all of a sudden so we still can’t have her doing tummy time unless either really watching her or if she is on a really padded surface as her head just comes down with such force. Her core doesn’t seem to be getting stronger and she still curves her back. Her progression has either stopped or is going at a snails pace but although this keeps getting me down I’m still going to keep ploughing on with the physio and baby classes, I’ve got to, I’ve got to hope And I’ve got to believe I can strengthen her enough to sit up or roll without help. One thing I don’t know how to help is her babbling or lack of babbling. She does make a ahhhh noise and her cry is soft so I know she can make noise but she is silent 97% of the time it’s rather strange and I don’t know what exercises to do to help her or if I can help her. She’s also not responding to her name, she turns to sounds so isn’t deaf she doesn’t recognise her name yet. I’m not going to worry but it is scaring me a little. 

BGs school is putting her forward to get some help as a young carer as she helps so much with MO and BBG, not because we expect her to but because naturally she does. So hopefully she can get this so she has some BG time just her to be a ‘normal’ child.

While MO was at his party, SB and BG were playing mummy’s and daddy’s and I loved watching them play. SB was the mummy and proudly declared how the baby had come out of his tummy. It’s just beautiful watching children play and laugh. Just realised how much time MO takes as I never just get to watch and smile at how the others play. 

Easter holidays have now started and despite SB asking every day if we are going on holiday we are staying home and doing day trips this holiday. Fingers crossed it is all calm in the household but not sure this will be the case I’ll let you know next week!


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