Autism Awareness Month Day 14

I woke up thinking how can it be Thursday already? This week is flying! It’s soon the weekend again yay!!!! I overheard MrJK tell Nae-Nae that they are going to town straight after breakfast so she should tell me what she wants to wear so I can iron it. Her response to him was just a simple “Ok Daddy.” I just sit there sometimes and just marvel at their conversations. When I need to go somewhere and need her to come with me I have to give her a whole story as to why, when, how etc and even then she still moans. But MrJK says it and there’s hardly ever any fuss. She’s a real daddy’s girl and I actually wonder some things she does with me is just to wind me up? Well no I know it’s not that simple. She knows that her Dad is quite similar to her in personality and when he says they are going at a specific time and to one shop that’s what he means and they will go straight there and straight back without stopping to talk to anyone they see. Whereas me, I usually have a plan but once we’re out it might change a little bit and I will communicate the changes as they happen but I suppose it’s not always helpful. I am also quite well known in my town in comparison to MrJK so there’s always possibly someone that I will see in town who I might want to briefly stop and talk to. Nae-Nae does hate that and she can end up pushing me on or pulling me away if she’s had enough when I’m mid-sentence. It’s because it’s cutting into whatever she has planned next in her mind.
JJ and I left the house for school and work leaving the King and princess to get ready for their adventure on the bus to town. I drove to JJ’s friends house as usual and wondered whether the routine with the phone would change. Nope on cue he still did it but I saw him glance to see if I was watching so I turned away as if I wasn’t thinking about it because I didn’t want him to feel pressured to try another way. He just can’t change that pattern right now, it’s just something he needs to do in that way. It’s quite fascinating especially as he can be quite flexible in other things.
It’s Thursday and on Thursdays I usually cook dinner. Yes I do it at least once a week lol. MrJK has the other days covered. It’s always a Thursday as this is the day when I often have time off work or I’m working locally from home that I can finish early enough to cook and have dinner ready when the children like to eat. I forgot to do the weekly food menu this week so everyday we’ve been playing it by ear. The food menu works extremely well when it’s in place. I usually sit down with the children and we plan what we will have for dinner for the next fortnight. As they are also at the age/capacity to understand nutrition value, well Nae-Nae has an obsession with it, these meals will take all those factors into consideration. We ensure they are well balanced and not too repetitive. We only do it for the evening meal though.
These children are slightly privileged as they have a freshly cooked meal everyday. They do not eat yesterday’s leftovers. In my day my mum or me would cook something that could last 2-3 days and guess what? That will be what we will be eating for the next 2-3 days. MrJK and I cook just enough for the meal and a little extra so that either one of us of both of us can have the leftovers for lunch the next day. At times MrJK will want something different to what the children are eating so he may make that for the two of us around the menu. This is still better than early days when JJ and Nae-Nae wouldn’t eat the same things as each other so there were times where MrJK would cook three different meals a day. It was craziness but essential at the time.
So my mistake today was forgetting to ask both children what they wanted to eat at the same time so I just asked JJ in the car and what he asked for I thought yes that’s easy as they will both eat that and I will just call home at lunchtime to tell Nae-Nae the plan. Well… It sounds simple enough but when I rang home at lunchtime, MrJK advised me what Nae-Nae wanted for dinner and that they had bought the ingredients for me when they were in town. I thought that’s fine, it’s something JJ likes so I will go with that as they bought all fresh ingredients which will need to be used whereas what JJ wanted was a pasta dish so it only required some fresh ingredients which I did already had at home but could be preserved until tomorrow or Saturday.
I worked from home in the afternoon so I had a quick catch up with MrJK about their shopping trip. I wasn’t checking on him or anything and I don’t normally check on what he does, I’m no longer that control freak, I simply wanted to know so I can add it to today’s blog. Well… He explained that they left the house at 8.30am which for Nae-Nae is a great time as its early enough for the town to not be too busy. He told me that the bus was quite empty so she was happy to get on the first one that came. If it’s full she will be reluctant to get on it. Oh I have a biggest meltdown in the world story all about an experience getting on a bus but it’s a long story so I’ll save it for another blog. Anyway, MrJK advised that when they entered the shop she put her hands in her ears. She’s got a thing about not wanting to hear music playing in shops. It’s a recent thing as it didn’t used to bother her but now it causes her complete discomfort. For that reason if I need to go food shopping and I’m with her I tend to go to the smaller version of this shop which is on the other side of town as it doesn’t play music until Christmas. However it’s only easily accessible from our house by car and MrJK doesn’t drive so it’s not really an option for him so he goes to the town superstore.
MrJK stated that they whizzed around the shop, she took her fingers out of one ear to pick the ingredients for dinner. She often cooks this meal with me, well she chops the vegetables and watches me do the rest so she knows exactly what it requires. They paid for their items at the self service point which she loves as she likes to scan things. Then straight back home again in a flash. They didn’t stop anywhere else and certainly didn’t stop to talk to anyone so for both of them it was a successful shopping trip.
When JJ got home from school I told him what I planned to cook for dinner. The look on his face said it all. He had planned in his mind all day what he had told me and even though what I was suggesting is something he likes he still wanted to eat what he suggested just because that was what he prepared his brain to have. I read the signals correctly as I asked him “But you still want to eat what you planned in you head to eat right?” He nodded and walked off. He seemed so relieved that I din’t tell him he can’t have what he planned. Well there was a dilemma for me. Which child do I please in my decision? JJ is used to having to give in to his sister’s needs and I actually don’t like watching that any more. Just because she screams louder doesn’t mean his needs are any less so I try not to let her control all situations as much as possible. When I have planned a day out and she decides she doesn’t want to go last minute, if MrJK is at home I will still take JJ and leave her home now whereas before it would just get cancelled. I don’t want JJ to grow up resenting his sister for the things he hasn’t been able to do due to her needs. I saw it beginning to happen so I had to snap it out quickly. She developed a phobia of flights so for years we had to remain inland for family holidays but JJ had great experiences of travelling abroad and he wanted this to continue, so last year I decided to just take him alone, just me and him and MrJK agreed to stay with Nae-Nae for a week. We went to New York and had a blast. It came at the right time too, just after his big brother was murder, which affected him deeply so this was a distraction he needed.

The whole family is affected by the needs of a child on the spectrum not just the parents so taking care of the siblings well-being is very important in my view too even if they are equally on the spectrum as their needs are different. They may have the same diagnosis but they cope with different things differently and they like different things. I used to get comments from people saying “Oh gosh you have two children on the spectrum poor you.” I can laugh about it now but it could cause an offence. From my experience parents with children with additional needs don’t need pity they just need people to recognise and understand. I don’t have the “woe is me” attitude so personally when people say to me “Aww sorry” or they give me the face of sympathy like I have just been bereaved or the child is dying can be a little annoying. Yes it’s not a walk in the park raising children with additional needs but ASD isn’t a disease so we’re not looking for a cure we just want people to understand it a bit more so our children can access what they require and they are treated on face value and not in line with some statistic that some researcher put together.
Anyway back to my cooking decision. Guess what I did? Yes I cooked both meals! Nae-Nae helped me cook the meal she was having by cutting and preparing the vegetables and MrJK half cooked JJ’s meal for me so it was a result all round. The best thing was, there were three people in the kitchen at one time cooking and we all survived without arguing or ‘killing’ each other. It doesn’t happen often. When I’m cooking I don’t like MrJK there as he makes me feel nervous because I know he is watching my every move and cleaning up underneath me. It can be very stressful. Today he didn’t do that which was a miracle! I thank God for that lol.
I haven’t been to the gym for weeks because I’ve been so busy with lots of things but not going has been causing me underlying distress. I hate dead money. I don’t like paying for something that I am not using and although I am still doing some exercises at home now and again I just didn’t think it was good enough. I can be hard on myself sometimes though. I spoke to one of my sis’ and she is like my virtue personal trainer. She understood where I was coming from but reminded me that soon I will have lots of time to do it at the same time agreed that if I wanted to get that feeling out of my head then best to act. So I decided to act. So after I cooked dinner and the kids were settled I went to the gym and joined a class I had not done before. It was a step n tone class and there were times I was out of my depth in keeping upas it was like musical ballet and tap which I never connected with but it was a great workout so I felt so much better after it.
I came home and the family had already started playing ludo so I had a quick bath to get the sweat off and then I joined in. We had such a laugh and there were no tears even though a certain child didn’t win. The training is working. It’s the small things!
Happy days.

Peace and love

MrsJK