Wow just WOW.. This week has been nothing like the first week of holidays. The rose tinted glasses are well and truly off, the band aid has been ripped off and wow!
I decided to write this weeks blog today (I know it is early) but mainly because it is Easter weekend and I don’t actually know when the next time I can sit down and write, so I shall apologise now for the blog being early:)
This week has been completely not chilled!
Monday was beautiful, we had some family friends over and this was wonderful, seeing the kids laugh and enjoy themselves was magical. MO after 5 minutes decided he needed to go on mine and dads bed watching gumball to calm down as there were too many people but he was good. BBG was interacting with the families baby and the week actually started really well. All the kids went to bed well and I went to sleep the calmest and most relaxed I have been in a while. That night MO got up a fair few times. He did come and wake me up at one point but generally he stayed in his room or wandering backwards and forwards to the toilet. This has been waking SB up this week. So I am not sure if it is the heat or just that MO is getting noisier in his night time walkabouts but whatever it is, I am exhausted by it. The night time walkabouts have been happening every night this last week. I am really hoping for an uninterrupted nights sleep tonight to function!
Then we got to Tuesday. I was a bag of nerves. I was going to the consultant at our local hospital, this consultant I had never seen before, BBG’s usual consultant was only locum and now we were seeing the consultant that specialises in neurology at the local hospital. I don’t know why I was worried, BBG is under GOSH and she is under them for a reason. Anyway, she explained that basically she was just the person in charge of BBG’s care if we were ever in this hospital. Our consultant is still GOSH but she will deal with everything from her position at the hospital and monitor BBG locally. She asked what was wrong so I explained for what felt like the 1,000th time. She asked the same set of questions and did the same sort of confused noises. She then examined BBG. Here she did a lot of reflex tests and for the first time in a while BBG was finally floppy floppy in front of a consultant, her reflexes were absent until the consultant kept trying them. She lay motionless other than to follow the consultants hands around with her eyes and then slowly her head. BBG just laid there. On examining her back the consultant said that she had mild scoliosis. Thankfully as it is mild it means that is just needs to be monitored and hopefully that is all. For the first time it was actually said not just hinted that this isn’t going to just be a case of next year she will be walking and all this will be in our past. It was said that it is complicated and that we will be back for a while and when she is 4 we will try a range of tests that are more invasive that they won’t do on babies generally. This is where I wish I had my hubby with me. My rock. We were expecting it to just be a simple appointment of being told, yep she is gaining weight, yep she is under GOSH, right see you next appointment. I know this doesn’t sound like a big deal but it was a huge thing for me to hear. Apparently with all the abnormalities that BBG has even though they are all mild/moderate they all need monitoring and indicate this is not a simple muscle strengthen fix. It sucked.
BBG was put in her jumparoo and after a couple of minutes had given up. The day in the life of BBG, wanting to play but too tired to play and her muscles letting her down
So after that appointment we met up with one of MOs friends in the park… and all I will do here is copy the open letter I wrote on my fb page:
To the lady that stared,
Today I was at the park with my children and having a play date. My son was getting more and more frustrated and ended up lashing out in an autistic rage melt down.
I took my son out of the prying eyes of the parents. As something had upset him, now this could have been simply some one came to close to him or someone said something in the wrong tone. He can’t deal with social situations and as a mother I did fail him today.
I took him away from prying eyes. I held him close as he is a danger to himself when he gets worked up. I had him pinch, punch and kick me. I had him screaming into my ear. It broke my heart. After what seemed like eternity I called my husband to come and help as I was tired from holding him. My husband took him away again from the other children, he sat him down quietly and calmly and held him while my son punched and scratched him.
Then you came over. The park is huge and you decide to stand 3 foot away from my husband. You decide to call your kids over to said spot. You proceed to watch and just stare.
My son is not naughty, he has autism. You were there and so knew I was involved in the boy lashing out and yet instead of politely asking if we were ok and if we needed help or just simply walking away you stared and made us feel uncomfortable and my son lash out more.
We could not simply put him in the car and driven home, we couldn’t physically carry him home, we had to deal with him there and then for his safety.
I get that not all disabilities are visible, I do honestly understand that but anyone who saw the incident would have known there wasn’t something quite right about it. You see autistic meltdowns aren’t like a normal child’s melt down, there is nothing you can do or say to calm my son and it can take him over 30 minutes to settle. They can start over nothing.
My son started self harming when he was at home, in his safe spot. He started smacking his head and biting his wrist. He has now calmed right down and asked me why he isn’t normal and he saw your nosiness and felt upset by the whole situation. That breaks my heart. You may just be being nosey and seeing what all the commotion is about it’s human nature but your actions caused my boy to hurt himself.
The thing that gets me is that you purposely came to stand close by and watch and then you wandered back to where you originally were. It’s humiliating knowing you literally came over to nose at us struggling and once you had had your fix you walked away! What was the point!
I guess I’m writing this as I know I’m not the only one to have dealt with this kind of nosiness, in fact I know it will happen again to us at some point, but I hope this open letter makes people realise that sometimes just stand where you were to start with, you don’t need a better view, we aren’t a show for you to watch we are human beings. If you don’t understand come and speak to me and I can explain don’t just stand and judge!
I am so grateful for MOs school friends mum, she helped me while I awaited for Dad to come. She was so understanding and we have decided next meet up will be at one of our houses.
Tuesday was awful for me and MO. He saw the lady and he has now refused to leave the house without a fight. He was fully aware of that lady. He was well aware of what was happening.
Yesterday was Dad’s birthday, I needed to go food shopping and thankfully my mum was also going food shopping and to the shop I wanted to go to. After bribing MO and promising him I would leave my shopping trolley in the middle of the shop and walk out if he needed me to, we all bundled in the car. I will only take MO to waitrose as the whole shop just has this relaxing vibe about it. We met up with mum who gave BG and MO a bar of soap to hold as we went to find my dad. On the way to find dad I somehow ended up in the salad department and had lost my train of thought. I had gone into auto shop mode and forgotten MO needed to give this soap to my dad. I was just about to put some salad bags into the trolley when he started to get frustrated, started to grind his teeth, clench his fists and growl. I dropped the bags and found my parents quickly. Peace was restored. We went around the shop as normal. We even bumped into the SENCO of the school which was nice. However this in its self troubled MO who then started to do a lot of stims (self stimulation) for the rest of the shop, so I now had a flappy armed, twitching child. At the checkout he looked like a cross between a chicken and a robot. However he was happy and I decided to treat the kids to a happy meal. Other than that Wednesday was quite uneventful, we had the slight frustration, a couple of minor lashings out and that was about it until pj time and MO took 10-15 minutes to take his clothes off and fold it neatly into a pile. He doesn’t do this unless he feels uncomfortable or anxious. The events of Tuesday and shopping had made his internal demons come forward. That night MO was up more than 50% just wandering. It is heart breaking. I think this is harder to watch than him lashing out as you know he isn’t coping but you really don’t know what to do.
I decided to immediately order some sensory toys for next day delivery out of the gofundme money. This money I was going to save up and order some bigger pieces and do maybe a joint order with Wetogethr however I couldn’t wait until Saturday to order. My boy needed his stuff now. So I ordered a couple of light things which has come in handy today, we still have a bit to add to the order as well if needed. I went to my mums with SB, BBG and BG while dad stayed in with MO. Was lovely to hear the other kids play with their cousins and made my heart smile when Dad sent a picture of MO watching the lights and he had been for 15 minutes silently.
We knew MO was different when he was 20 months old. We moved home from Prague so that we could be with family for support. We have now been on this journey for 3 nearly 4 years and it is getting harder. I don’t know how many more nose bleeds I can take, I don’t know how I am going to cope with the summer as at the moment long sleeves hide what my son does. He isn’t a monster but he is such hard work. Even when he is not being violent it breaks my heart when he can’t do things like other children, that he self harms, that he gets weird looks just because he looks like a robot chicken but thats because he is self stimulating. There are maybe 20 minutes in the day when I can look and not worry about anything as he is in his element and you wouldn’t realise there was anything wrong. BBGs specialist health visitor was amazed to find out his behaviours are bad even though he is in Reception as they generally don’t show themselves so bad in the school environment until year 1. That the SENCO, has asked US for help with MO and that the consultant isn’t really sure what help she can give us as we are doing everything in our power to let him have a normal life. The fact these small sensory toys have already made a difference I cant wait to get more and hopefully all of it will make for as normal a life as possible.
Some of the sensory equipment, including one amazing tube of light that MO will not stop looking at when its on and a never bursting balloon bubble that he blows up and can push, pull and squeeze as much as he likes in frustration it will not break.
Can not wait to get his dark tent to put his light things in as they just instantly calm him
ASD and holidays suck! Hypotonia with body abnormalities suck! This week sucks! Bring on Easter and chocolate!
Dads first ever handheld, he doesn’t get hugs except maybe once a year, and in fact doesn’t get any affection from MO so this hand holding on Wednesday while he was watching his bedtime tv made us all cry with happiness. This week has brought out some positives and I am glad it was on one of the biggest things for an ASD child and their parents, we got affection.