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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Milestones: the infancy through toddler years

So, we reached a milestone yesterday, but I really think that I should put it in some perspective, give it some context.

Frances has had many milestones to reach over the years. You wouldn’t know it unless you had been around us at the time, but there was a point at which we didn’t know if Frances would walk.

She was the “floppy baby” that parenting books sometimes describe; some of her reflexes that she should have outgrown by seven months remained while other reflexes were absent.

She was delayed in sitting, rolling over, standing, and crawling. Plus, she had pronated feet (which later required orthotic inserts).

Weekly visits with occupational and physical therapists improved her gross motor skills and her coordination, and she was diagnosed with hypotonia (low muscle tone). She did, of course, walk steadily by 16 months, and she ran with breath-taking confidence by the age of two.

Also, from the age of four months, it had been clear that she needed to have her eyes evaluated. At five months, she was diagnosed with severe bilateral strabismus (both eyes crossed) and, though she was seeing out of both eyes in alternation, there was the very real risk that she could lose her vision. It was the worst case her paediatrician had ever seen.

She also got her first pair of glasses upon her first visit with the paediatric ophthalmologist at five months.

Finally, once she was walking and had had eye surgery at 18 months to correct the alignment of her eyes, the rehabilitation centre asked me if there might be any more concerns of mine to address.

I didn’t realize that I was being gently nudged, but, besides her eyes, walking, and those other infant milestones, I really couldn’t think of anything.

It was true that Frances would require the daily use of eye patches for several years due to an “over correction” during the surgery (which meant that one eye turned outwards), but that was being addressed and it wasn’t their area of concern anyway. So, I was bewildered.

Then, a clinician asked if language was a difficulty. By this time, I hadn’t noticed until that very moment that, in fact, Frances was not developing new words or even really using the words that she had acquired so early.

So, if you’re still following…In summary, at first we didn’t know if she would sit, crawl, rollover, or walk. Then, we didn’t know if she would lose her vision or be able to see well enough to not be legally blind.

Now, at 18 months, we didn’t know if Frances was going to be able to speak. A speech-language pathologist evaluated her: she scored very high with receptive language and lower than average with expressive language.

From that point on, Frances and I attended early-communication groups on a weekly basis for about a year which, for a while, were concurrent with the gross motor groups that had got her walking.

She didn’t speak in these groups, and it made me nervous. But, one day, about seven months into the groups, during the “pick a song and sing together” portion of the session, I realized that I could hear the faintest little voice singing “Old Macdonald Had A Farm” for the first time! So, we knew that she would be able to speak which was an incredibly emotional moment. (I can see that moment so clearly: she was sitting on my lap while I sat cross-legged on the carpet.)

Did I mention in all of this that nobody suspected autism? If anyone did, nobody mentioned it even once?

But that’s another story for another time. I will say that Pink Cup Sister noticed, and would continue to notice, at this time that Frances wasn’t “emotional” and didn’t “play right”.

At any rate, Frances remains very myopic but, with glasses, her vision is now corrected to 20/20 and 20/30 which is pretty damn good.

Over the years, she has been seeing the orthoptist and the ophthalmologist every two months or every six months. We have virtually been fixtures at the children’s hospitals.

Yesterday, after more than eleven years, we were told that Frances no longer needs to be followed by the specialist for her vision and that she can see an optometrist like the rest of the Pink Cup Family!

This is an exciting milestone and, while trying to describe its significance, I have skipped over the parts where my doubts tugged at me throughout her toddlerhood and preschool years: Was there something not typical in her development? Like, for instance, she didn’t respond at all when put in a swing at the park; she never spoke a word at preschool to anyone at the facility; she didn’t like to be spoken to or to be asked questions; she didn’t like to be touched; she wouldn’t look at anybody…I really could just go on and on.

I should note that, before Frances was even three years old, I would ask several doctors and other professionals if we should be concerned about these things. Nobody was concerned, but my suspicions lingered.

Sigh… Deep down, I had always had suspicions that my daughter’s development wasn’t typical; but, if everyone who is supposed to help tells you that everything is fine…Well, then, what do you do?

I ended up doing A GREAT DEAL about it: there was a huge struggle to climb, by hook or by crook, through the different tiers of healthcare in order to have Frances examined by the right professional (a developmental paediatrician).

I promise — I will come back to that struggle and to those very important years spanning the ages of three to six-and-a-half. I know that I can think about it and write about it, but it’s so difficult for me that it has be at a slow pace.

Suffice it to say for now that the eventual diagnosis of high functioning autism spectrum disorder was very much anticipated and welcomed. We actually celebrated, but I’ll leave off here.

If you read through this very lengthy post, thank you.

🙂

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.”

😂 😂 😂

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!

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! 

 
 

Ad naturam 

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.