Months 3-4 review

Ongoing Goals

• Dietitian appointment

• Weigh in

• Challenging fear foods

• Recognizing thoughts and feelings

• Building positive thinking skills

• Self Care

We have been quite busy over the last few months and this post is very past due. Here are some highlights:

• Joint meeting with an Autistic Professional and our Therapist

• Sam went back to work, part-time

• Relaxing the food plan and schedule over the holidays

• Sam picked up a flu bug

• Christmas

• Visits with friends

• Meal out with co-workers

• Birthday

• Euthanizing our beloved cat

• Anxiety

Dietitian appointments

It is always a pleasure to meet with our dietitian. She offers good advice and starts off our week right. With the changes in our routine and the problems we face she suggested that Sam step up and prepare breakfast some mornings so that I can get my sleep. The first week this worked out fine, then we started to fall into the same trend as before. Late start to the day, missed snacks, and some diners not complete. The reason why we fell behind was because the days where it would be useful for Sam to prepare breakfast were not defined in our schedule. We talked about it and added Sam’s breakfast days to the schedule and this is now working well. Concerning completing meals and snacks, I am at a loss in how to motivate Sam. Although this may not be true, I feel she seems to intuitively know how much to eat to just maintain her weight and does not push herself past that point.

Due to the fact that this is a long journey to recovery and it does take us a while to adjust to our meal plan we have altered our dietitian appointments to every 2 weeks. Then as it got closer to the holidays we also decided that there would be a lot of meal changes so we postponed meeting with our dietitian until after the holidays.

Weigh ins

No big changes here. Sam's vitals and weight remains stable, with no to small gains. I do keep looking at the positive side as there are no major set backs. This is hard because of course I would like Sam to recover her weight quicker. Additionally, over the holiday’s our doctor’s office is basically closed so weigh-ins in December/January are irregular. We basically are going over a month with no check in. Also to note, strides forward have been hampered with unpredictable steps backwards. Sam got a flu bug and dealt with GI issues. Sam is a trooper and does put forward the effort but does depend on her team to keep her on track.

Challenging fear foods

The fear foods that we have tried have mostly gone well. So far the fear foods that I have given Sam are ones that I know she likes and have been home baked. The first batch of shortbread cookies did not last long. Shortbread cookies are always a Christmas time favourite and I am very pleased that Sam did not need much encouragement to eat them. Chocolates also are not an issue. During the Christmas season they are more plentiful and this is good. I have also seen some great progress. One day after playing outside Sam asked for hot chocolate and I added marshmallows while Sam added a mint candy cane. Another win was a request for chocolate ice cream. Our Christmas dinner was just the three of us with me cooking a bit larger turkey than usual. The leftovers were made into turkey pies which are now frozen and ready to eat for future lunches. And Finally, to finish off the holiday season, we very much enjoyed a birthday cake.

There is one interesting discovery we have had. Food anxiety. We have had issues in the past around one of the breakfast meals. First off when she works on the next week's schedule it gets dropped. I didn’t allow this as I felt it plays into Sam’s restriction of foods. So I made it again. This is by no means a filling breakfast in my opinion but when given to Sam she struggles to finish it and it sets off a feeling of being full. The full feeling continues throughout the day resulting in skipping the morning snack and struggling through lunch. I have come to the conclusion this breakfast is causing anxiety which causes physical issues of her feeling full. When anxiety is high the last thing your body wants is food. So presenting Sam with a meal that creates anxiety is very counterproductive and I need to be mindful of her thoughts and feelings. Sam wakes up with anxiety, It is a part of her ASD. When low it is manageable. How do we keep it at a low level? Sam manages this well in her own life with planning. Knowing what to expect and having a plan and/or a routine helps keep her anxiety low.

Recognizing thoughts and feelings

Discovering that Sam experiences a “Full Feeling” with her anxiety is interesting. This does fall into being able to recognize thoughts and feelings. Understanding what your body is feeling ties into your thoughts. Those with Autism do have sensory issues. Not just with external senses but also internal senses. Being aware of physical feelings and being able to identify them with your thoughts becomes an art of its own. Besides work in therapy on thoughts and feelings I feel that yoga brings so much to this area. Yoga practices mindfulness of sensations to both your physical and mental wellbeing. It is my hope that in time Sam will be able to identify both her physical and mental states.

How I feel and how ED is affecting us

Sam’s ED is affecting me by taking a lot of my time. Preparing meals and snacks that have the appropriate amount of calories that are needed to maintain/increase her weight takes time as does our morning routine of fitting in yoga. With being at work in the evenings my time is limited. I don’t get enough sleep and we have gotten into a habit of a later start to the day, we now have been skipping meditations and our morning snacks. Furthermore, due to the difficulty in getting the appropriate support we need through our public health system, treatment for Sam, which involves ongoing therapy and dietician appointments, costs our family a lot financially. I do get frustrated, stressed, and warned down.

The mental health issues around the way the ED and ASD brain functions seems to hinder the ability for reason, motivation, and being able to perceive consequences. We’ve tried no yoga if a meal is incomplete but it seemed like the wrong consequence as yoga is way more than an exercise, it brings mindfulness and an understanding of connection to body and mental wellbeing. I feel yoga is an important part of my day and Sam’s. I try to remain patient but it is hard. Many days I feel frustrated. Usually at this state I go back to the FEAST website and read through the many posts of other caregivers' experiences to get the encouragement and strength to keep going with this battle. Visiting this website and reading the experiences of others puts things into perspective and makes me realise that everything is OK, I just need to keep going. We have slow progress, baby steps forward and very very little steps backwards. Our struggles really seem minor compared to what others go through. This I am very grateful for.

Other tid-bits

First, Sam has gone back to work part time. Besides the importance of social connection with her co-workers and with horses her income will help with maintaining the cost of her therapy. Also, many fun activities have taken place over the past few months. One yearly family activity we do is a family craft project for Christmas gift giving. This year Bob cut out some Christmas shapes in wood that Sam and I painted (mainly Sam).

Sam had a few get-togethers over the holidays with her friend. She enjoyed the effects of our Christmas snow storm and built a snow fort in the drifts it left behind. We had a quiet Christmas day with a great meal, leftovers made into turkey pies. Our Christmas Eve routine visit with close friends moved to boxing day. And Sam enjoyed a dinner out with her co-workers. We finished off the Holidays with a non-eventful New Years Eve and a wonderful Birthday celebration. January 1st was Sam’s birthday. She had a visit from her friend that joined in on the celebration and of course there was a yummy birthday cake.

January 4th

A very emotional day for both me and Sam as we had to say good-bye to our cat Sparkly. Our cat has been part of our life for over 20 years. Sam had taken over the care for Sparkly and had extended her life by well over a year. She took control of her feeding schedule a few years back and gave her meds daily for over 10 months. Sparkly had a very long and good life, we loved having her around and she is very missed.