Don’t give up, make adjustments and revisit later – A day in the life parenting Autism while climbing my mountains

Often in our lives there are things that we attempt with our children that do not always work out as we planned first time around. I have found that’s it’s not because they can’t do it or won’t ever do but sometimes reasonable adjustments need to be made to make it possible. Sometimes people in general are rigid about the way things are done or should be done but we don’t actually consider our rigidity and expect others to conform to that approach but at the same time the world views those on the spectrum as rigid.
One thing I often say to myself when someone tells me this is what they do and this is how to do, is why do we have to do it like that? Is it because someone wrote it in a book one day and because of that we have to do it?  Right that makes sense…! A lot of things we do in life don’t actually make any logical sense to me but we do it because that’s what we have been taught to do in that way and then we wonder why those on the spectrum who might be quite logical don’t get it or resist doing it! I just want to leave that thought with you all.
These last few days have been days of overcoming things that used to be hard or we stopped doing cos one or both of them found it hard or we had to consider revisiting things but putting different adjustments in place, compromising on some level for things to be bearable and in fact enjoyable.
I was sitting on my bed just pondering about life when Nae-Nae just entered the room and said “Mum can you cut my finger nails and toe nails please?” Now that seems like a ‘normal’ thing to hear but no I almost collapsed at the sound. One of the things Nae-Nae and JJ have hated most is having their nails cut and their hair washed. Oh my gosh the screams we used to get. Hubby and I had to practically pin them down to cut nails so it wasn’t something we did regularly but when they started growing long we had no choice. I hated doing it as much as they hated it cos for some reason it caused them high levels of distress which caused me high levels of distress to get it done. I can’t even remember all the different things we tried to make it easier for all of us. I think I blocked that out of my brain and all I could hear today is Nae-Nae asking me to do it.
At the sound of that I instantly stopped whatever I was doing and cut her nails. No drama, no tears, no struggle. It was a beautiful experience. As I was flowing I called JJ to do his. He wasn’t as willing but when he saw that Nae-Nae had hers done first and he didn’t hear any screams from the room he happily complied also. I think I was in shock quite frankly, but this is them all over. There are things that seem so unbelievably difficult and I wonder will it ever be easy or achievable without any drama and yes things like this are testament to the fact that all things are possible. Just cos it’s hard today doesn’t mean it will be hard for the rest of their lifetime. We have to keep revisiting it as it may be that the approach we had wasn’t right for them or they change so certain things that caused them distress become a minor.
I was on a roll that evening and asked Nae-Nae if I could wash her hair. She said yes and asked if she could go under the hood dryer and have her hair steamed too. I just laughed out loud! Usually this whole process takes ages and Nae-Nae just wants me to do it quickly so she can get on with life. She was requesting the longer process, wow!
I listened to her giggle to herself as her hair was being washed and she had an excited look on her face as I wrapped her head and hair with cling film so she can sit under the dryer for a hair steam. She sat there with her IPad in her hand singing away to s song she was playing as she waited for the timer to ping. This was a picture I never imaged seeing. It really warmed my heart. Our children will do things but in their own time and in their own way.
Summer holidays is in full swing and although I’m still at work all day at the moment, when I have a day off I want to make the most of the time and take the children out. Hubby takes them out as much as he can but usually they just request to go as far as the back garden or at best the local park. They have fun playing indoors more as they don’t really like the heat especially when the flies and bugs are out. However on my first day off I went to a sad sad funeral in the morning and then back in the afternoon to take over childcare duties while the hubby did his work assignments.
I spoke with the children before I left in the morning and asked them what they wanted to do. Neither of them could agree on one thing so I suggested Bowling. Now bowling was something we used to love doing when the kids were younger. JJ is super good at it and would have liked it to be a regular family feature but one day Nae-Nae woke up and on that day the bowling experience was difficult. The crowds, the noise, what other children were wearing was an issue, putting the bowling shoes on was an issue, just everything. It was meltdown city that day. Since then the thought of going bowling as a family was not high on the agenda. JJ still kept going but with youth club and his friends parents.
As I suggested it I thought of every possible adjustment I could make to ensure it would be a bearable experience and something that Nae-Nae wouldn’t be so adverse to. I thought about when it will be most quiet aha dinner time! I got into the mind of other parents and thought lots of people will probably go earlier and home for dinner or across the road and eat at the restaurants on the retail park so the bowling hall will be less busy. When I explained this to Nae-Nae she got the logic behind my thinking and visualised the calm and more peaceful experience.
I thought about the lighting and showed her pictures of what it would probably be like at the time we go, dark with discos lighting. She smiled at this idea. Even if there are other children there she won’t be able to see what we are wearing. I thought about potential queues so I rang the centre and asked about concessions and queues. I spoke to a really lovely lady who made some pretty cool adjustments for me. I explained there’s a chance that I might not get through one game but if I do I want a second game. She worked it out so that I paid for two games at the price of one with extra provisions thrown in. If you don’t ask you don’t get.
We had dinner before we left and I recorded Nae-Nae’s 6pm food channel show. She will not leave the house if she knows she is going to miss it but I explained if I record it whatever time we get back she can pretend it’s still 6pm and go through the usual routine thereafter even if it means staying up a bit later that night. Oh I had every angle covered!
We went bowling, got there and Nae-Nae was told by the lovely lady that we didn’t have to wear the bowling shoes like she used to hate. But guess what Nae-Nae said “JJ and mummy can wear our own shoes but i’m wearing the bowling shoes.” I just laughed in my heart. I offered to make things easy for Nae-Nae and get her to use the ramp slide thing for the bowls but no Nae-Nae said she wants a challenge even if she doesn’t win. I was like “WHAT???” Even if she doesn’t win?!?! No way I didn’t just hear that but actually I did.
JJ is very good and I wanted him to play as he would normally but I wanted Nae-Nae not to hate bowling again so I thought I would not try too hard and at least let her come second. She didn’t need much help though as she got lots of strikes and was very pleased with herself. We got through both games. It was quiet the lighting was perfect and the games were perfect. JJ is so good with his sister too and championed her throughout and wiped us out at the same time which is good for him. He often makes sacrifices even though he is also on the spectrum but I didn’t want him to do that cos it was about returning to his first love too.
When we finished Nae-Nae ran to the arcades. I thought she would just want to go home but no she wanted to play some more so I let them.
Everything worked out better than expected. I asked Nae-Nae if we can come again she said “yes mummy it was fun.” YES!!! A success! Bowling is back in our lives. It’s all about revisiting and trying again with adjustments. I wish I didn’t take this long to do it but hey.

We had a family function at the weekend and there was no option for Nae-Nae to opt out as we were all going and Hubby was cooking at the function and besides its a family member she will usually not say no to visiting cos of her deep love for them. However this family member had moved house so it wasn’t the place she’s used to going to. I knew this would create an issue for her so I took photos of the garden etc to show her but failed to take a picture of the front door. My BADD!!! I realised as we arrived. We got there early which was good. Nae-Nae doesn’t like entering crowds but crowds can come after her. We got to the front door and I saw her face. Oh boy!!! She hugged me and instantly I knew I messed up!
We got in she toured the house jumped on the bouncy castle which she loved and then she had to get away from everyone and my relative had his iPad connected ready to play his music but thankfully he got that she really needed it so he had to make a reasonable adjustment and let her have it and find an alternative. She ran upstairs and I followed. Yes it was extremely antisocial but she needed to be in one of the bedrooms alone. I left her upstairs with the IPad and didn’t make an issue of it cos all she kept on saying is she needs to go  well she couldn’t cos daddy was cooking and it’s not round the corner so I wasn’t taking her home.  If it meant we could do what we needed to, we get to enjoy ourselves, JJ gets to hang out with our family and she stayed upstairs away from everyone so be it. The world has an expectation that everyone needs to be sociable anyway. Who made that up? Someone scientist wrote it in a book and we all follow it. Trust me Nae-Nae doesn’t need people to be happy. I see her father do it too there’s no depression there. Their own company is enough.
After a while Nae-Nae came down asking to go home. It was nearly her dinner time and silly mummy created a menu at home not considering this day. That day had pizza on the menu and we were at a BBQ with no pizza. Nae-Nae needed to go home and eat her pizza at the time she expected but we weren’t ready to go and even if we left at that time she would have missed her dinner time and the journey home would have been stressful. So we had to talk. Yes I got screams, cries the works. She went for my mouth but my reflexes were sharp and I intercepted it like the karate kid and caught her hand in mid-flow. She was trying to stop me talking and something in her head says grab my mouth, well not on this watch!
I laid down in the bed with her and hugged and comforted her. She needed to see love and patience. I knew I had to get to the root of her issue. She was struggling with the fact that the house was new. Our relative came upstairs on cue. God is good. He explained to her why they had to move cos that’s what she was asking me and after the explanation she settled down. She could also see that it was upsetting for us all and didn’t want to upset him either so she came off the anxiety mountain and discussed compromises. She agreed for me to order pizza and she had to have Ribena in a cup with a straw. That’s what she would have had a home so I asked our relative to buy Ribena and bendy straws as they only had straight straws at the house.  She said she didn’t want to eat in the house so I suggested places like the park or the car. She knew how ridiculous it sounded so she didn’t agree to anything so I just stopped talking and left her to play again.  When the pizza arrived I was downstairs and she knew it had arrived or she timed them but on cue she came down made a space for herself at the table that had the buffet on it lol and ate and drank with a smile. Once she had eaten she was fine. She moved around the house as though earlier didn’t happen. Those that came after would have never known that she was upstairs struggling for hours.

One relative in particular was really good with her too which helped. Nae-Nae likes helping make things and that lady allowed her to help mix the punch and went along with Nae-Nae and her questions about the expiry dates of every item. I was about to explain why she does that and the lady reminded me that she knows as she reads my blogs. That touched my heart deeply.
Another reason I write my blogs is to create awareness for my friends and family. It can help them understand why we as a family do what we do and don’t do. Sometimes it is emotionally tiring when I have to explain things to people and sometimes I think why do I need to explain? Why doesn’t the world know? But actually that’s the point if we the people that are experiencing these things don’t share how will people know? They won’t find all these things on their Google searches, plus this way I get to tell lots of people at once too and hopefully my blogs are of some comfort to others that are experiencing similar things.
There is hope in all things! All things are possible and with reasonable adjustments, here and there things that seem like they will never be achieved can be. We also need to adjust our minds!

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Peace and Love.

MrsJK x