This past week 

For so many years, as is often the case in families affected by ASD, our autism sibling has been more independent as her sister’s needs have been addressed. It has been as if she is on the Frances Show where it’s all Frances all the time. 

This has recently changed, and both she and Frances are adjusting rather well to the change in family dynamics.

We have discovered that Pink Cup Sister has special needs as well — though not the same as those of Frances — and she has been receiving the lion’s share of attention recently.

How has Frances coped in situations in which I can’t pay her as much attention? She’s done really well. She doesn’t usually leave my side, but she will give us privacy when Pink Cup Sister, Pink Cup Dad and I have to speak of matters personal.

This isn’t to say that we’re not still working on goals with Frances, too: she struggles with issues of food, coordination when dressing, following sequences without verbal prompts, communicating when she feels unsafe at school and a host of other issues that would fall under the “social” category.

Recently, I was saddened and surprised to learn that a child in her classroom isn’t very patient where Frances’s interest in horses is concerned.

Now, as is sometimes the case with ASD, my daughter’s interest is all-consuming, and she will speak about horses frequently because that is the means by which she has discovered that she can relate to others.

The other child will frequently challenge Frances on horse facts and tell her that horses are weird, etc. He’ll say anything to bother her.

I’ve learned that another boy sticks up for Frances and refuses to let the mean boy’s behaviour go unchecked.

I think she’s had enough though this week: she tells me that she had the “perfect storm” for a meltdown when loud noise, too many people, too much movement and the mean boy’s comments combined and caused her to be overstimulated. She cried uncontrollably, and her wonderful teacher helped her through the episode.

The teacher did inform me that the boy is, in fact, being mean to Frances, and that she is keeping them well separated to avoid any more conflict.

There was also a change in her schedule that probably contributed to her meltdown, too: her father was away on business for the week.

Let’s just say that it has been a long week for all of us.

I’m so glad that it’s Friday. Yay, Friday! 

 
 

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For the first time, Frances is going to a day camp that isn’t operated by people that she knows.

It’s a big change, but it’s not as big as it could have been–she is also attending with two of her cousins with whom she is very close.

On the first day, there were no tears at separation, but there were many reassuring words and hugs (when she permitted).

It’s a nature-oriented camp that involves activities such as canoeing every day. Pink Cup Dad and I both enjoy canoeing, and we’re happy that Frances is enjoying being on the water (and that she is so closely supervised).

She is surrounded by the outdoors: (animals, dense forestation) with lots of activity (hiking, canoeing, crafting).

She has also met a girl who seems to be very protective and friendly towards her and who enjoys horseback riding, too. This has allayed some of my own fears. This is her new “best friend”. (While she uses this term with everyone with whom she connects, I’ve no doubt that she means it when she says it.)

I signed her up back in February and indicated on the application that she has HF ASD. To my knowledge, she has not required one-to-one support at all and has managed well while just having her cousins there with her.

Next year, perhaps she’ll be ready to attend a camp without her cousins. I can see this happening for her. 

Independence

One facet of my life with Frances is that her unusual development makes the future even less predictable than I could have imagined.

For example, I had a toddler who could be left in a room for a few minutes while I went to the kitchen, who didn’t seem to notice if I was in the room or not.

As she aged, Frances became less and less tolerant of my absence to the degree that I now have an eight-year-old who truly spends every single moment with me. 

Coupled with her intense fear of going into a room by herself, her need to be with me means that we are ALWAYS together: I am with her as she falls asleep, and she is with me as I try to drink my coffee in the morning.

School, and a weekly 2.5 hour group on Saturday, is the only real separation that we have — and summer vacation is about one week away. Both school and her social group end in June, and I am thinking about this often.

I am hoping that the next round of occupational therapy sessions (after the waiting list again) will address independence as a goal.

I wonder if her need to be with me will intensify as she ages. I just don’t know. I’m trying to take one day at a time.