8.10am I wasnt feeling the best (few extra aches and pains than usual) so decided to get the few town jobs done early. Ryan was in a very happy bubbly mood. Dropped Alex at school and had the usual run of questions, and Ryan answering himself, coming from the back seat. “Why did you use the wipers? Why is the fish tank shop shut?, because its early. Why is the frozen coke not working? Can we see the waterfalls? There’s Dads van. His shop is shut. Why is it shut? Can I go in Dad’s shop?”
Finally he stops to take a breath and I say “We are going to a shop to buy some pins for making things today.”
All good. We park. Wait 10 minutes for the shop to open. We talk about what we nèed to buy. We listen to music and look at ourselves in the sun visor mirrors. We see the staff put out the signs and Ryan knocks on the window and calls “hello!” Ryan finds 4 on ground and 4 on the parking meter and puts the coins in.
We got a basket (to keep Ryan’s hands busy), find the 2 items we need, pay and got back in the car. All still going great, Ryan calm and listening well 🙂
Drive down to church (only 4 blocks away). I told Ryan we are just popping into the office to pick up a piece of paper.
“Yes. Will the screens be down in the hall?” (Screens for music at the Sunday children’s programme)
Me “No, it’s not a church day. We are just going to the office”
Ryan “Yes, I’m not tall enough to reach the screens.”
Me “We are only going to the office. You need to stay with me please.”
Ryan “Yes, stay with you.”
Got the form I needed and I thought I might quickly fill it out (rookie mistake). Nope, that was the moment Ryan dropped to the ground, then ran off to the hall. Poor ladies setting up for a craft morning had “Mr noise and energy” yelling “I want to dance in the hall. Why are the screens up? Where is the music?” while jumping up and down and flicking his hands fast.
They nicely talked him, reassuring me he was okay, answering his questions and one kind lady even danced with him, then took him by the hand and walked him back to the office with me. I decided I’d have to drop the form back later and we went to the car. But Ryan decided he was going to kindy (his old kindy is right next to church) and attached himself to the gate, screaming and crying. Teachers and kids were looking, parents in the carpark and a poor little girl, who looked quite concerned, were watching me gently try to prise his fingers off the gate and manovere him towards the car, calmly telling him to get in the car, which was parked right by the kindy gate (again rookie mistake knowing how much he loved kindy even 3 years later) His screaming “help me, help me, I want to go to kindy” and repeatedly grabbing at the gate bars didn’t help the situation. I can’t imagine what people were thinking!
Finally got him into the car and another short battle of wills to get him in his carseat. Seeing him start to become unresponsive/heading into meltdown I resorted to bribery (distraction of maltezers) – not my best parenting move but also helped him to snap out of his tantrum before it became a full-blown meltdown. Halfway home he burst into tears and said “I’m sorry I wanted to put the screens down.” 😦
9.11am Home, shattered and emotional. Why do simple things need to be so hard? Why does 1 hour out feel like 10 hours? Why does Ryan act like all is right with the world while I’m still processing what I could have done differently… knowing I didn’t use visuals or realise a quick drop into somewhere where it’s different to his expectations would be difficult. Even though I know he finds it incredibly difficult to stop himself when he wants to do or see something, why did I put him in a situation that I knew would be very hard for him? Why do I feel like a failure when people see what looks like a very naughty child not listening to his mother? Why do I feel like people are now going to talk about what they saw, judge Ryan, judge me, behind our backs. Why do I even care what others think! 😦
Times like this I find myself wanting to stay home, where a controlled environment makes his behaviour easier to manage, but I know he is never going to learn to self-regulate or control his impulsiveness if he never goes out. And then looking back on this morning I wonder if most of my feeling tearful/sad/angry/frustrated/over-emotional is just me not feeling well, and my ‘version’ of how the whole situation went down could be described by someone else as not a big deal at all 😦
Ryan put his monkey hat on, sorted washing and turned a load on, played catch with Toby outside and had some marmite toast … all while I answered a phone call – and actually helped someone with some useful disability related information they needed, which improved my mood of helplessness … and I ate chocolate biscuits…
We finished the activity we started yesterday by adding a door and buttons to a cardboard box we painted… to make a washing machine! Ryan loved helping put it together. We used way too much sellotape and then had to reopen the box to put the bowl inside (duh, I forgot before taping it all up!) And then had to reattach the door due to my not factoring Ryans strength lol. He told me what to write on the dials (hot, warm, cold and wash, rinse, spin) and then took his socks off to test it out!
After lunch we had horse riding. And another frustrating meltdown over Ryan wanting to do a load of washing after his ride. At home I had said “no washing at riding today, we need to get water” and he helped me put the water bottles in the car to take and get filled. Going to the water place is usually a great incentive to keep Ryan moving and I thought it would help the transition leaving RDA. The RDA coaches said “no washing today” and even though he checked the machine, saw there was no washing he still threw himself all over the floor, screamed, yelled and refused to leave the building. All I could do was wait it out. As well as being hard to watch him struggle with the fact that he couldn’t do the washing, it was embarrassing – and then I feel guilty for feeling embarrassed There were a number of people around, his coaches, a school teacher and students he knows (not from the school he attended), RDA volunteers … and I couldnt do anything to help him. I had just been told how much of a different child he was and so much calmer than when he was brought to RDA by teacher aides… and then he throws a massive tantrum that turned into a meltdown. A few people came to try and help but I explained I just had to wait. I tried distraction with music on my phone, talking about the water place, and tight hugs to calm him but nothing worked. When he finally calmed (about 15 minutes later) and walked to the car he was very quiet. In the car he said “I’m so tired Mum” 😦 Heart-breaking looking at his sad face 😦
We got our water bottles filled and then parked to wait for Alex to finish school. I gave Ryan a touchpad with an ABC tracing app, put his favourite song on the cd player and while he sang and laughed, I sat and cried. Some days it just all feels too hard 😦
I was going to delete all the above and just say it’s been a hard day and show you our cool washing machine we made … but I like to keep it real. And if I don’t share the good and the bad how will people know what we are thinking/feeling when times are rough. And apart from stopping him hurting himself and trying to distract/divert/encourage a change in direction there doesn’t seem to be much else I or anyone can do. He was very pale and tearful this afternoon and asking repeatedly for a haircut. This is an unusual request and I wonder if he means his head feels strange as we are still decreasing epilepsy meds. When we were increasing and he was having lots of noticeable absence seizures he often complained of an “itchy” head behind one ear. Looking at the photos from this morning I didnt realise how yellow he looked (a thing that happens to him when neurological stuff – seizures/migraine – is going on according to one specialist). He ate a good dinner and hopefully we both feel better after a long sleep…