Purposeful activity…

I have to do a lot of convincing to get Frances on board with the idea of going to social groups. Usually, she will say things like, “I don’t mind groups; I just don’t like the people.” Though it sounds funny to us, she is quite serious.

She always has at least one group ongoing.

Of this group, the one that she has been going to weekly for several years, she says that she doesn’t like the people or the activities. We actually don’t give her the option of not attending. At this point, opportunities to socialize are opportunities to learn and to hone developing skills.

Also, at least once per year, her name comes to the top of the waiting list for a social group at the local children’s hospital (whose primary focus appears to be autism and ASD).

This year, the interventionists of the upcoming session asked if they could interview Frances on her own to determine her suitability for a group that starts this week.

I explained that she probably wouldn’t agree to an interview without me present and that the prospect of joining a group would not motivate her to be independent in this respect.

So, I had permission to be in the room while the interview was conducted. Her answers were not entirely predictable: she thought she had some friends (she doesn’t say this consistently), she liked to be on her own during recesses and lunch (she didn’t mention that she doesn’t know how to not be alone at these times), and she didn’t find this kind of group very helpful at any rate.

Near the end of the session, she truthfully said, “I’m really not much of a people person.”

Now, I completely understand this: she says it more often these days, and I believe her.

As clever and as smart as she is, however, she doesn’t believe Pink Cup Dad or myself when we tell her that social groups develop her social skills, that when she starts practicing and using her social skills she may enjoy interacting with people more than she does at the moment.

The reasoning behind development of these groups is that, as kids take social risks and interact, there are professionals on hand to intervene in order to start interactions, sustain interactions, and even end interactions. The children learn about cues and how to read them. They learn about what subjects are typically okay to discuss in different situations.

Personally, I like the groups even though it’s a struggle to get her to go; and, in this case, the parents will have their own concurrent group, too, which is a new development in the programming.

I jumped in at the end of the interview only to ask Frances if she had any questions for her interviewer about, perhaps, group size, the attendees, the activities or the expectations.

I also reminded her that there are times when she feels very lonely and that, perhaps, she could learn how to be less lonely by joining this one group.

I think that’s what did it; when asked a third time, she said she would give it a try. Yay!

The only downside is that this will mean that our time, from Tuesday to Saturday, will be busy: private group on Tuesday, horse riding lessons on Wednesday, hospital groups on Thursday, violin and flute lessons on Friday, and volunteering at the barn on Saturday. (She starts violin lessons on Friday just before her sister’s flute lesson.)

I’m actually starting to consider Monday to be a break! Except, of course, throughout the day during the week, there are appointments — one or two per day — that keep the girls and myself busy.

But it’s all good — it means someone (either Frances, Pink Cup Sister, myself, or, rarely, Pink Cup Dad) has access to a resource from which she or he will likely benefit.

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Changes

Things have been insanely busy around the Pink Cup House, but I wanted to catch you up.

Frances, at nearly 11.5 years, is changing.

For one thing, she has become very tall and lanky, and she’s starting to appear more teenager-ish.

For another thing, she is now likely to share facts with people as a way to connect, and she takes advice about how to interact. The risks she takes often pay off. Recently, I overheard her approach a group of adults and say, “Hi. My name is Frances.” People spoke positively about her to me frequently throughout the evening.

Moreover, she now combines honesty and humour to affect someone. For example, with all four of us in the car one recent evening, we had the following conversation:

Me: One day, girls, we’ll get a new car.

Frances: When Daddy finally agrees to spend some money…

We all laughed out loud.

As I mentioned before, her teacher has described her as “delightfully sassy.” The other day, I asked Pink Cup Sister to go to the basement for a step stool. She came back empty handed because all she could see was something that looked like a bench. Pink Cup Daddy went down to the basement and grabbed the stool. At this point, Frances said, “Don’t worry, Mummy. You won’t have to be disappointed in me: I know what a step stool is.” ๐Ÿคญ

So, “ribbing” her sister, her father, and, sometimes, me has become second nature to her.

She still plays with horse dolls, skips from place to place, but she is growing up.

Honesty as truth speaking…

Yesterday, we had a support worker from a respite program come to our house for an interview.

We are members of an organization that offers this summer service (a support worker comes to take Frances out into the community for a few hours each week) as well as monthly opportunities to socialize at well-planned events.

As it turned out, we had met our support worker before, last year, at one of the few events that Frances had actually wanted to attend.

We had gone to a planetarium, and while waiting for the evening show, Frances had met London (about 17 years old) and stayed by her side. They were fast friends.

Frances even opted (unbelievably) not to sit with me during the show and to sit beside London instead.

London arrived at our house on time, and I showed her to the dining room.

Frances had arranged with me beforehand that she wouldn’t have to take part in the interview, but, as London and I spoke, Frances came in to the dining room.

“Hi, Frances! It’s good to see you again…”

Frances took a seat at the table.

“We had such a great time last time we met!” London said.

Finally, Frances spoke: “I think I vaguely remember you.”

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I love her honesty! Since Frances really does want to make friends and has such a difficult time doing so, we are working on learning when not to be so strictly honest (since she will not lie).

I wasn’t worried, tho’: London is familiar with this possibility when some people with ASD, Aspergers, and autism interact. Besides, many people find her honesty to be a refreshing change.

I have to say that, when she was really young, and we didn’t have a diagnosis, she would not have even acknowledged that London was speaking to her.

Greetings appeared in stages: at school, teachers insisted on speaking to Frances and greeting her. For years, Frances was not responsive.

When she did start to respond, it was usually indicated by a change in her position or moving her head away.

By the time she was around 8 years old, she would mutter a “hello” without looking up and without stopping if she were moving.

At 11, Frances may respond with a “hello” or “hi” or she may respond with an observation (that is or is not relevant to the situation). If it’s an observation, there will be brutal honesty. Either way, it is a response!

Growing up

I haven’t been posting much recently because I’ve been so busy attending to Pink Cup Sister’s needs, but also because it’s difficult to write about some things.

For example, Frances is acutely aware that her school mates are “growing up” and she thinks that she may be just as young socially as she was when she first started the school back in 2012 at age 5.

This isn’t accurate, but that’s how she feels. She actually has grown unbelievably, in leaps and bounds, from the little girl who never acknowledged people speaking to her and who never looked at anyone, into a young lady who is passionate about all things equestrian and very comfortable with the people whom she knows.

She is definitely older intellectually than her 11 years by quite a few years, and, yes, a little younger socially: she still wants to collect and to play (yay!) with horse dolls, while her school friends move into the more frequently seen middle-school behaviour of standing around while chatting on the school ground during recesses.

So, she’s gone from the little girl who didn’t want to/know how to play with other children to an older child who wants to play and usually has no opportunity to do so.

Recently, while at a horse show, we were surrounded by the people we know–her coach, the stable owner, other riders and parents–from the stable. Frances, though hoping for someone to play with, announced, “I don’t understand non-horse people,” and everyone said that he/she understood this very well. She then said, “I’m a ‘me’ person, not a ‘we’ person.”

But nobody agreed with her. I put my arms around her (because she sometimes allows me to do so), and I said, “I don’t know about that. These are your friends; these are your people.”

Maybe they don’t play anymore, but they all love horses and “the horse life”, too. We all share an understanding of what it’s like to muck around in dirt; we all know the physical labour involved in loving horses (some of us more than others). At that moment, the feeling of camaraderie was palpable in the spectator stands. I think she noticed as everyone was smiling.

As we fell asleep during our weekly sleepover, I confided: “Mummies and Daddies get a little sad when their children stop playing with toys. I hope you’ll play with toys for as long as you want to even if you only have yourself to play with.”

This seemed like a good idea to her, and we drifted off to sleep while the intense heat of the day eased off and a gentle breeze made us feel better about a lot of things.

In other words…

Frances’s use of language often impresses me.

Her teacher recently told me that she believes Frances is quite a few years older than 11 (which we’ve actually been told is the case) and that she is impressed by Frances’s very dry sense of humour.

I love her sense of humour, too.

Last night, at the dinner table, the following exchange:

Pink Cup Sister: What are you talking about? You’re short!

Frances: Let’s say I’m ‘below my growth curve’…

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No pink dinosaurs this year

It’s birthday-planning time again. Time has flown by in the blink of an eye.

I find it hard to believe, but Frances will be 11 years old this month. She is younger socially (about 8/9) and older intellectually (about 14/15).

But buying gifts isn’t as difficult as it may sound; she still only has one interest which is expressed in dolls and books and conversations and lessons: horses. (Thankfully, she has discovered, in the past year, Playmobil horse sets, so our options have expanded.)

In my previous post, I discussed the fact that some behaviours sometimes come and go, or change, well this includes her behaviour in response to stimuli such as sound (and the emotions of others).

In the past, when very young, she would hold her ears and cry (leading to lying on the ground and screaming) when her environment was too loud.

By the age of 10, she wouldn’t often lie on the ground screaming but would hold her ears and, eventually, cry.

Now, her facial expression clearly says “anxiety”, and she starts flicking/tapping her fingers which rapidly alternates with flapping her hands, while making sounds that quickly lead to crying.

Being in restaurants, school, theatres, buses, streets, malls, stores, etc. still causes her great distress. (So, I’m actually baffled by the private facility that provides her weekly social group when they choose bowling alleys as a venue.)

Of course, not all children with HF ASD react to the same stimuli or even to the same stimuli in the same situations, but Frances has always responded to “loudness” with obvious coping behaviours.

Recently, I’ve also noticed that where the emotion of others is concerned (such as if another child is angry or sad), she now repeats a word or a sentence over and over again while holding her ears and, then, while crying (when she previously would have cried without the use of language).

At any rate, we have two options when coping behaviours appear: remove Frances from the environment or have her listen to music on her phone with earphones.

Usually, we try earphones and music; if this doesn’t work, then we have to take her out of the environment either temporarily or permanently (depending on whether her distress continues and/or if she’s willing to try again.)

I wonder if the change in coping behaviours indicates an improved ability to communicate distress? Or if it means that Frances is actually in more distress than she would have been in the recent past? Or both?

Ah, so many questions as always where ASD and our girl is concerned.

Anyway, I’ve got to get some birthday shopping done now.

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Happy New Year!

I haven’t written anything in this new year mostly because — at some point in 2017 — my life became insanely busy.

Pink Cup Sister, who has a learning disability and a social anxiety disorder, now has the symptoms of a severe tic disorder. This disorder includes vocal, phonic, and motor tics, the latter of which pose such safety hazards as uncontrollable self-injury and episodes occurring where falling is a possibility.

Unfortunately, I have uncovered a health concern of my own as well involving my vision/optic nerves.

Now, Frances and I have always had an amply full schedule of appointments that has kept me very busy; with the added appointments of Pink Cup Sister and of myself, well, let’s just say that appointments are now my full-time job.

But that’s okay — it means that things are getting taken care of, challenges are being identified and overcome, and matters are being addressed in general.

And, fortunately, amid all the worrying and the hurrying, there are some moments that catch you off guard, ones that leave you breathless and utterly aware of how much there is to appreciate.

Perhaps you won’t be surprised to learn that it is often my children who gift me with these moments; in the case of Frances, the gift is often in the form of questions that allow me a glimpse of how amazing her brain is.

The other day, while I was taking her to school, the following:

Her: Did you ever realize that, if everyone just followed the rules, there would be no drama in the world?

Me: You are SO right!

We then, giggling, ran through the zebra crossing while stepping only on the black stripes, just because, and I felt light and giddy and free of concerns about the year ahead in that moment.

Worth a try

Frances: I think people are getting bored of me talking about horses at school.

Me: You’ve got to let others talk about themselves.

Frances: I let Sally talk about her guinea pigs, but it was so boring.

Me: You have to let yourself be a little bored, and then others won’t mind being a little bored when you speak of horses.

Frances: Okay.

I wanted to include this conversation, which happened before school, because I think I’ve found another way to reach Frances. (Also, it illustrates a difficulty that children with ASD may experience.)

I’ve heard professionals advise Frances to do a “social fake” where the child pretends to be interested in what someone else is saying. It doesn’t work with Frances. She doesn’t believe that her conversations about horses aren’t always riveting to others. So, I tried another approach by asking her to be bored for a few minutes.

By letting her know that others feel a little bored sometimes just as she does, she may start to realize when people don’t want her to speak and interaction could go more smoothly.

It’s just a thought. I’ll let you know if it does, or if it doesn’t, work.

Periodic update

One fascinating aspect of 10-year-old Francesโ€™s personality is that she remembers facts so well and that she shares them kind of…randomly.

For example, the following recent conversation was brief but interesting:

Frances: The atomic number of copper is 29.

Me: Okay, thanks.

There was no preceding conversation. We just happened to be passing each other in the hallway, and we both went our own way afterwards.

Part of me knows that Iโ€™ll have to help her understand that she canโ€™t start conversations like that with, for example, someone walking past her at school; another part of me does find it adorable.

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