I’ve always enjoyed the fact that Frances lines things up. In fact, to be honest, years before she got her diagnosis, I started noticing that she did this. It didn’t concern me because, as I said to Pink Cup Dad once years ago, Frances “always has a good reason” for doing so.
“Like what?” He asked.
“Like all of her baby dolls are watching TV.”
“That’s not a good reason…”
I can actually see his point now. She would have lined them up and THEN decided that they were watching TV because she doesn’t have storylines or narratives when she plays. The lining up is the priority and not the activity of having them “watch TV.” Her behaviour isn’t, and wasn’t, typical play behaviour.
Nothing has changed about this activity as she has aged, except that she isn’t interested in baby dolls anymore; she is intensely focussed upon horses and horse dolls and horse riding and horse-doll collecting and horse documentaries…
While waiting for an appointment recently, she sat on the floor and lined up her (Schleich) horses. She didn’t have a story that preceded or accompanied the lining up of the horses; she didn’t have one afterwards, either. I think it’s just what a herd of twenty-plus horses would look like if they were going somewhere.
Frances actually has many RBIs (repetitive behaviours and interests), and this is my favourite: she’s been doing it since she was about 13 months or so.
The behaviour to me seems harmless; if she likes lining up objects, why shouldn’t she? Certainly, it can be messy: I’ve literally seen hundreds of my books continuously lined up and looped around objects throughout the entire house because my 18-month-old daughter was THAT focussed. I was very impressed even as I picked up every single book.
I know that it’s a behaviour closely associated with autism and ASD. I like it.
So, recently, Frances and her class went to an art gallery. Pictures of the field trip were promptly posted online, and one, in particular, caught my attention.
Among her classmates, Frances is sitting opposite the presenter or guide for the tour. Quite clearly, Frances is speaking, and the guide is listening.
Out of curiosity, I asked Frances if she could remember what she had been saying. I mean, the photo suggests that it is an interesting conversation, and I love that someone had captured the precise point at which she was speaking, too.
Frances: The lady said that she was used to dealing with much younger children, and that we should tell her if she speaks to us as if we’re kindergarteners.
Me: Yes…But you were speaking. What did you say?
Her: I said, ‘Um, just to let you know — you’re speaking to us as if we are kindergarteners.’
(Her honesty, though legendary, is spoken in neither malice nor rudeness; she simply took the guide’s instruction at face value.)
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.
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.
Frances takes a break during one of her last few ballet classes.