SO this week has been world book day at school! As you can see our little darlings dressed up for the event and they were all so happy to be able to donate some money to the world book day charity to provide reading books to the children in Africa. They were extremely excited to be doing this especially as their uncle writes books and these captivate all of them but especially MO who if he could would read all 20 every single night! It does help that Uncle J has researched into the best fonts and pictures to use for ASD and children with learning difficulties but MO loves them because they are actually factually correct as Uncle J has a marine biology degree and MO likes the fact they don’t lie to him. (quick plug https://www.amazon.co.uk/Chris-Crab-Jon-Adams/dp/1495959430/ref=sr_1_3?ie=UTF8&qid=1488652613&sr=8-3&keywords=chris+the+crab I am sure there is a smaller link but this will get you to his first book)
MO had a big old meltdown because a certain book we were reading lied to him this week. The book in question was one with flaps and pullys and all sorts. Well one of the badgers wasn’t hiding from his mummy and the book says he was… the book is now not allowed in his room and he will never read it again. This was something that I didn’t even pick up myself, usually we vet things to minimise meltdowns but MO and his literal thinking is really getting bad at the moment at home and we do not know why. this book being one of the things that set him off this week.
Another time this week where we had to deal with a meltdown was over toothpaste. I thought I had brought the correct brand as the one he likes to use and it turned out it was wrong, he just could not get past this, he could not understand it is still toothpaste just with red and blue stripes in, once the initial shouting and meltdown had finished, he just rolled up into his ball and just sobbed, I don’t usually but I decided to pull him close to me and whisper into his ear how it will be ok. Usually if I do this he will go crazy again but I just felt like I had to comfort him and thankfully this did it. Needless to say his school day was shocking but we understood it was because it started so badly over some toothpaste!
2 meltdowns in 2 days that could have easily been avoided but because we were off the ball we didn’t realise. We felt terrible, we felt like the worst parents in the world and our hearts broke, I have only experienced the heart break once before and that was when MO on the 2nd day of school turned to me and said some older kids tease him and he didn’t know why and this had the same reaction, once the kids were in bed, tears would just fall, tears that my boy is different, tears that he will experience this the whole way through life, tears that he won’t cope with certain situations.
I also failed as a mother with BG. We are so conscience of not letting the kids know that we are stressed and upset about BBG, however we do understand kids pick up on situations. hearing your daughter say that she hears you cry and knows about my worries is upsetting. I tried not to cry that night, however in the bath the flood gates opened not because of BBG but because of her sisters love and kindness and her empathy, then that turned into tears as MO doesn’t know how to have empathy and then it turned into tears of poor SB he just runs around the house like nothing is wrong but his “I love you” every 2 minutes are probably his way of knowing there is stress. I just seem to be failing this week.
Although saying how much I failed this week I also had some fun! I discovered snap chat a couple of weeks ago and this week I learnt how to use filters and then how to save the pictures. SB really enjoyed turning himself into a sweetcorn cob and burning up to make popcorn but I love the picture above. This picture always makes me smile to see him so happy and the laughter he had when he saw he was wearing sunglasses and lipstick was hilarious, BBG also got in on the action and turned into a big eyes bunny rabbit! I felt like I was winning as a Mum and was actually able to do this whole mum thing without feeling guilt!
Sooo BBG has had a whirlwind of a week. On Tuesday we had phsiotherapy. BBG was having such a fantastic day! I was constantly saying, “she is never like this” or “I have videos to show she is never like this”. I felt like a phoney! Poor old BBG on Wednesday suffered big time poor thing. She would not do anything! I decided to walk to baby yoga to see if the fresh air woke her up a bit… well the answer to that is nope! Infact during yoga the teacher came over and mentioned that Olivia seemed extra tired and floppy. She carried on being like this until Friday night. It was horrible just having this completely awake child just cuddling into you, not being able to hold her head, not gripping just like a doll. Friday she was back to talking, back to moving herself and you wouldn’t of even thought there was a problem other than the lack of rolling etc. The again today (Saturday) she is having an ok day. her grip is hit or miss, her head is bobbing all over the place and she is just weak! I compiled a folder on my phone to show the physio of the last 2 weeks, both good and bad days and realised 6 days she was completely floppy! 6 out of 14 days… I thought it was once or twice a week this shocked me. It shocked me how normal it has become that I just don’t realise. Tuesday the physiotherapist said she wanted to see us fortnightly, unfortunately the next appointment wasn’t until April/May time but we booked in and just thought we would continue to do the exercises, then Thursday the childrens centre called, they want us to go in Tuesday, I was shocked but relieved and was just praying that on Tuesday we would get to book our appointment for the following fortnight…. well today we had our confirmation letter which also included a letter for the next appointment at the end of March! This one however is including an occupational therapist with the physiotherapist, I am not too sure what that appointment will entail but I am looking forward to it.
Since our last consultants appointment people have kept asking about BBG and when we are likely to hear about the next appointments. We have been saying “4 months, 4 months and we should get the letter saying when our appointment is”. Well Friday I was doing the food shopping when I had a phone call, Great Ormond Street (GOSH) saying they had been trying to contact us and can we come in Monday for a full day of testing! I obviously said yes! I was just so happy that they had managed to get us in so quickly! Through the day though I got more and more anxious…. they want us there before 9am… we will have a pushchair going up with the commuters… what if the train gets delayed and we miss our slot… what if we get lost on the way there… what about the steps on the tube up and down with commuters – just WOAH! my brain was working overtime! I booked a hotel, I would go up on the Sunday and meet Dad there in the morning that way if the train was delayed at least BBG and I would be at the hospital. Then over today I was getting more and more panicked, I had visions of all sorts happening and so thankfully my mum agreed to have the big kids for a sleep over so that Dad can come up with me and BBG the night before. Don’t get me wrong I still phoned the hotel to make sure they could accomodate pushchairs and made sure they had a cot in place. I made sure that I could pay on arrival so that in the morning I don’t need to worry and just get to the hospital. I also clarified it was only a 9 minute walk! I am still nervous, my heart is still doing 10 beats a second. This could tell us what is wrong, this could answer so many questions and yet it can also bring back a lot more questions, a lot more ponder and a lot more uncertainty. I don’t think I can deal with uncertainty. I just need to breathe but every time I sit down to just breathe my mind starts wondering and overthinking everything!
One of the ways I have been taking my mind off of MO and BBG is knitting. I have been doing it for a few weeks now and I especially love hand knitting scarves, the different wools giving different textures, thickness and warmth its amazing. I then brought bespoke HUGE knitting needles so I can knit hats 🙂 I had wool and scarves etc coming out my ears so a little facebook page later and I can still get my brain into something not health and worry related and not clutter up the house, killing 2 birds with 1 stone!
So this week has been so positive and yet I still can’t help but kick myself at being a crummy mummy! Next week will be better, next week I will not cry every night… unless happy tears 🙂