A Dose of Reality

Life in the land of special needs. On duty 24/7. Feeding, toileting, bathing, shaving, entertaining, guiding, nurturing. Guilt that I am not doing enough. Irritability that there is not a moment of peace. Cross that I have to do this for the rest of my life. Love is: when he requests a family hug. Joy over every little bit of progress. Amusement when he happy dances to pop music. Delight because he can say 'oh shit'. Thick skin from dealing with stares and rude people. Sadness.... comes with the territory. The awareness that 'small stuff' is not important. Understanding that it is always possible to make a plan (if you want to!). Relief that we can leave him with trusted people... and take some time out. Happiness because we can now take him on adventures. Our life is different than most, yet similar to many others who walk the same path. Such is life! 

Up Close and Personal

I am doing a short photography course. It is very interesting and a real challenge. 
We are learning about Lightroom (online photography editing program) and lots of other fascinating stuff. Sadly, I broke my camera lens while doing one of the homework assignments.... but hey, such is life. Gulp.

Our lecturer has asked us to choose a personal project for the duration of the course. After much thought, I eventually decided to focus on Nick. He is extremely difficult to capture, therefore this project will give me the opportunity to really practice using my camera, working with light etc etc. Way harder than taking photographs of flowers! 

Let's hope he enjoys his 'male model' role as much as I enjoy my role as photographer!

Orange and Green Stuff

Oh my word, I am sick of eating Butternut soup, Butternut and Ginger soup and Curried Butternut soup! I can't for the life of me understand why Nick likes to eat Spaghetti Bolognese three or four times a week. Yuk.

But, hey, it's fabulous that Nick likes the soup. Woohoo, a new food.

I threw him a curveball today by planning a little family lunch, outside on our veranda. Me, the husband and Nick. No iPad, no music, no story CD's. No fruit and veg juice, no yoghurt and no toast with jam. Wow, lots of changes for my boy. We had soup!

Anyway, while we are on a roll, I decided to try something new. Edge +1 and all that. I found some baby marrow spaghetti at our local smart shop that looked pretty good, and I figured that it would blend in well with pasta. When Nick's supper had been cooked, I called him over to watch me serve it up. First the pasta spaghetti, then a small amount of baby marrow spaghetti. I added the mince on top and then chopped it all up.

Nick sat at the table, bowl in front of him, fork hovering over the food. He eventually ate around one third of the food and then started to sign for 'finished'. He ate a tiny bit more while I continued to send him reassuring smiles of encouragement. Eventually I could see that he was struggling a bit and after some thought I decided to remove some of the green bits of baby marrow. Voila, that seemed to do the trick. I guess that after years of eating Spag Bol, having some green in there was totally wrong! Generally, Nick polishes off a large bowl of his favorite meal, however, this time he only ate around two thirds. Needless to say I was really pleased with his effort and the fact that it was a relatively stress free experience.

Slowly but surely we both continue to make progress on this food journey of ours. Adding new foods to a very restricted diet is possible. The proof is in the pudding vegetables!

Family Time

We have had a proactive day that involved a few changes to our regular family routine. In fact, I threw Nick a huge curveball by postponing shower time until late morning! Wearing pajamas at breakfast time is not usual in this house! He helped me unstack the dishwasher, mix up a big batch of cereal, measure out some ingredients for Play Dough and assist with washing some dishes. 

In my quest to expand on Nick's limited diet, I decided to make Butternut soup for lunch. Unfortunately, I was missing two major ingredients, so decided to change the flavour by adding some curry powder. Nick is not used to strong tasting food so I only added a teaspoon! His lunch is pretty much the same each day, therefore it was a new challenge for him to have the soup, especially one that was a tiny bit spicy! Woohoo, he ate it. #happymum

Nick and his Dad went out for a walk to get some exercise in for the day. When they got back, I gave Nick the go ahead to have some iPad time. He had far too much, but hey, his folks needed some space. He also needed some time for himself and I think that it is important to respect that. 

We received an invite from friends to go out for supper to a local Indian restaurant. To be honest, I was a bit concerned about taking Nick, as my Butternut curry soup is far removed from Chicken Tikka Masala! Thankfully, the husband was adamant that we could make a plan and he ordered Nick a takeaway Spaghetti Bolognese from the local Italian restaurant. Everyone was happy and we had a lovely time, thank you very much. 

All in all, Nick was an absolute star. We were able to be spontaneous and go out at the drop of a hat. Our morning was upside down, yet Nick just went with the flow. I let go of the mother guilt and didn't worry about the extra time he spent on his iPad. 

It's been a wonderful public holiday for us today. Happy Women's Day, South Africa. 

Keeping it simple

Thinking up planned engagements doesn't have to be hard work. It is also not necessary to spend a lot of time on each engagement/activity. I find with Nick that if I spend too long on any one thing, the actual activity starts feeling like a chore. I don't want Nick to feel.....'groan, here we go again!' I prefer giving myself some sort of limit to guide me when to stop the activity, ensuring that I keep it short. Over time I have found that this approach keeps Nick interested and he is never resistant about joining me.

As always, when planning an engagement I take into account what Nick feels comfortable doing and ensure that I add in a little challenge. I decide on my objective/goals for the activity, what limits I am going to set and the style of language I want to use. It is so helpful to have a plan in place and it's not difficult to jot down your thoughts. I find that a written framework for an activity helps to keep me on track. I can also reflect on our experience and write down my thoughts on my approach for next time. Simple, yet effective.

Two easy planned engagements this afternoon. 

1:  I invited Nick to help me find the ingredients for Bolognese sauce. My role was to let him know what I needed. His role was to find each item. Nick is familiar with this type of scenario, however, this time I introduced items that he was unsure of. He did require extra scaffolding and I used eye gaze and declarative comments to assist him. My self imposed limit for this activity was seven items. Once they had been found, the activity ended.

2:  I asked Nick to turn off his iPad and invited him to help me wash the dishes. He responded immediately and came to check out what I was doing. I had set aside eight items. My role was to wash an item and pass it to Nick. His role was to rinse the item and place on the drying rack. Nick was unaware of what was expected, so I modelled the sequence for him before inviting him to take a turn. He picked up on the pattern quickly, although at times missed out on rinsing. I made little noises or declarative comments to remind him to rinse. 

We all have household chores to do and they offer up many opportunities for planned engagements. If you are a regular reader, you will know that we cook a lot of Bolognese sauce! No matter how many times I cook it, there is always a different way to introduce a new challenge to Nick...... and that includes cleaning up the mess! :)

Happy cooking!