Me: I’m so lucky to have you. Thank you for being you.
Frances: Who else would I be, Johnny Depp?
Me: I’m so lucky to have you. Thank you for being you.
Frances: Who else would I be, Johnny Depp?
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.
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!
So, last night, Frances came into my room with a piece of Scotch tape and a washable marker, then proceeded to get my fingerprint.
She said, “Thanks for the sample” as she left. Very mysterious.
There are times when I just don’t press the issue. Take, for example, the time that the cat was a pretty shade of purple and nobody seemed to know why and, certainly, nobody confessed. The cat didn’t mind, so I eventually left the matter alone. But, I still wonder: who…? Why?
I wonder if I’ll ever know why she wanted my fingerprint… 🤔
Frances has officially finished Grade 5. Her report card was excellent, and her teacher described her as “witty and sassy and delightful.”
Frances’s teacher and I actually discussed my child’s humour which she described as dry beyond her years. It often does catch me (and her teacher) off guard.
Take, for instance, the other evening. Frances and I were watching one of our favourite documentaries about a specific tornado — which she takes very seriously — when, during the segment of interviews with people who experienced the destructive event, her brows furrowed and she asked:
“Why do they keep putting ‘Survivor’ under their names? It’s not as if they could have used dead people…”
I’m so glad I wasn’t eating at that moment because I would have choked!
Anyway, she truly meant no disrespect — it was merely that the editing of the video had struck her as illogical and, therefore, funny.
And, well, I am still laughing…😂
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.
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’…
Me: Can I give you a muffin?
Frances: Gypsy moths are an invasive species.
Me: Okay. Here’s a muffin.
Because it remains a challenge for Frances, her social/pragmatic language often produces very unusual exchanges between us.
This one caught me off guard one recent morning, and I had to stifle a giggle.
I will always help as much as possible to make being with others easier, yet this is one facet of her personality that I absolutely adore.
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.