I thought I would post an itinerary of our day, however good, bad or boring.... I had planned the day in my head and thought it'll probably be quite uneventful as I really needed to do the housework and hadn't really planned anything but that, as B was out to an activity in the evening. However as you read on, things don't always go to plan... I was in two minds whether to post 'our day' but it does show the reality of our lives with a child on the spectrum.
Just thought I'd point out I do try and go to the gym in the morning a couple of times a week before Jon leaves to work - if he's not working away, so that wasn't an added 'look how good i am moment' - I need to exercise in order to keep my stress levels down and hoping it will give me increased energy levels in the long run.
This is an account of our Monday.
6am wake up
6.30am at the gym - 20 Min's cardio, weight training, shower and get ready
7.40am back home - empty dishwasher, make Jon tea, help get boys ready, put last nights ironing away
8am Jon leaves for work
8.30am breakfast for us, bible time with kids and feed the dog
9.15am sort out boys activities, begin housework
10am prepare snack for boys, sort out games continue on with housework.
By housework I mean, washing/drying, tidying up from weekend, polishing, ds toilet room, kitchen and hoover. It is a light house clean up as in between this I'm sorting out conflicts and timing out computer allowance. They are playing together but its very loud so am now nestled in the conservatory sorting and cleaning the toys and books to keep a better eye on things.
11.20 play has become too boisterous so TV break
12.00 lunchtime
12.30 Younger boys are playing and B has decided to make micro lite models. I decided to hoover to finish off downstairs. L is crying and really upset and it doesn't take long to realise he touched one of B's models and B decided to punish him. Comforted L, he was ok. B did not understand why his actions were wrong at all, even though i kept my language very simple and that it is unacceptable to hurt others. He becomes very cross with me and goes on a rampage. Eventually goes out into the garden (yes it was raining) I put L to nap and i ask the others to tell me straight away if B leaves the garden.
1pm dealing with the episode. As its pouring with rain I see if i can coax him back in by cleaning his hamster - as this is something he wanted to do - it did not work. I decided to leave him and see if alone time will calm him down. Although still keeping an eye on him as our back garden is not totally secure. He comes into the house, not speaking or acknowledging anyone and takes several things back from the house to the play shed, including his yellow calm down bag. We leave him be as can see he is calming down. The other 2 are playing a nice game together so I distract myself by making a bread pudding.
2pm B calls to his younger brothers to come and see the den he has made. He seems much calmer now and I'm quite pleased that he made his own little den in the garden. It is still raining but the younger boys go out and play in the rain with their coats on.
2.15pm B comes in to say he wants to say sorry to L now. Its also time to wake him from his nap. I bring him down, B says sorry.
2.30pm All are now all inside and we have a snack (dried fruit) A new toy box comes down and the younger boys play. I'm feeling a bit tired now so sit down and watch the last bit of 'escape to the country' with B who asks several questions through it, as he tried to understand what is happening and what the point is.
3pm kids TV goes on, I decided i'll get more of a sitdown in peace this way
3.30pm craft time. We all sit round the table and do rub ons and stencils as well as magic painting. When they are settled into activity I start making dinner. The younger boys eventually trail off and play.
5pm dinner is served followed by pudding
5.30pm tidy up from dinner and the play room etc
5.50pm daddy comes home, early for a change
5.50pm onwards convincing B to get changed as he has a short break of archery and abseiling to go to - this is a short break of group activities for children with disabilities. Archery is something he has always wanted to try.
6.20pm finally, he is dressed appropriately and we leave the house
6.35pm arrive at activity. He is not keen to go, he hides and doesn't really talk to anyone. He does not like meeting new people and new surroundings. It takes a while to convince him but the group leader is prepared for him and i do leave (a rather anxious son) at the activity.
7pm come home and have a quick browse on the Internet - hubby is still making sure the younger boys are settling down to bed.
8.10pm leave to pick up B
8.25pm when i arrive, B is in high anxiety state and currently running around the site on shutdown communication mode. I try and find out what is happening but its a difficult time as everyone has come to pick up their children. I didn't get the full story until later on as I needed to deal with the current situation - find my son and calm him down. This is what had happened, B settled and did really well at the archery. He wasn't keen on abseiling but was encouraged to have a go. As he went down he got more and more anxious as didn't like it and by the time he hit the floor was in meltdown mode. The staff and i caught B and walked him back to my car but he was too agitated to get in, we had to restrain him so he didn't run off and for his own safety as it was getting dark. Its not nice restraining an ASD child but in this instance we had too. ASD children are very sensitive to touch so being held down is traumatic for them and they will use aggressive tactics to get away. It does not aid calming down at all. I had to call Jon to help me as there was no way i could get him home on my own and the site was going to close. Jon had to find an emergency babysitter - thankfully he did - our neighbour. When he arrived B broke free, the leaders had re-caught him. Jon and I quickly made a plan of Jon restrain in back seat, I will drive. We both grabbed him by the arms put him the car and away we went. We're quite used to the kicking, head butting and screaming by now. Just as we're to leave we discover they need to lock down facility and our other car is on site. They kindly agree to keep it open for us and hope our kind sitter would not mind driving back with us and taking Jons car (we couldn't leave it as Jon was out early tomorrow for work, its a work car so she would be able to drive it insured).
We leave site at 9.05pm and he is beginning to calm down restrained in back seat by dad
9.20 back in the car with our kind neighbour to collect the other car. When I got there the leader was able to fill me in on what happened from his perspective and we drove home
9.35 B is calm, we send him to bed etc
9.45 We go through the events together, the lessons learnt and to try and calm ourselves down from it all. When B is like that we have to be really strong, firm and our communication has to be basic, one voice in neutral tone. This is to keep his processing time right down, as he is highly anxious all his senses are on high alert and we need to keep everything calm. As you can imagine, this takes a lot out of you and when its over all your emotions just pop to the surface.
11pm head up to bed, although its difficult to sleep and could be up in the night looking after the children.
Meltdowns are not just an odd occurrence, its a very real part of our day, some are worse than others. We had prepared him for this evening events however on this occasion, it was too much. It is sad as you see the other disabled children appear to cope quite well. In someways this meltdown wasn't that bad, because I didn't have the younger children with me, it wasn't too public with lots of people watching us and I had help with people who understood.
B is 8 years old, nearly 9. He is quite strong for his age and his meltdowns are not like toddler tantrums they are really disturbing. Its hard to describe but its not a spoilt child having a paddy when things aren't going his way. After tonight's events and because of the other meltdowns/near misses we've had this summer, we decide its no longer safe for me to go out with just myself and the boys. It is too risky for their safety and Jon is not always local to help out. We do not have a big support network around us to help us, this alone is very stressful. We also think that although the day has been fairly relaxed due to the upcoming evening activity, the mini meltdown he had earlier in the day affected him more than we realised.
We are very thankful that we have lots of toys, a garden and that mummy has an interest in art (not quite sure that this is why i went to uni though??) We can always go out at the weekend and perhaps next summer holidays we will look to hire a carer to help us go out. It is a really hard balance as you want to expose your child to as many interesting and helpful activities as possible - i do not adopt the - 'i can't do it because I'm disabled' philosophy I'm much more 'we do it despite of my disabilities' - because of this, i guess we put our selves more at risk. I know that staying in may not really fit in with our life philosophy but I do have be practical and part of being a parent is keeping your child/children safe. I'm outnumbered, so we'll just have to do and plan things differently....
