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.

🙂

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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.

🙂

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! 

 
 

Good changes

Like many children with ASD, Frances has a severely restricted range of foods that she will eat.

I have to explain: there are several foods that she will eat in general, including vegetables, but, in a single week, she will focus only on one or two foods. (She also won’t eat food that is soft or food that is at room temperature or combination foods such as sandwiches, soups, pizza, etc. Food served must appear the same way that it has always appeared or it’s “not the same” and she won’t eat it.) Meltdowns at meals are inevitable even when the food options and appearance are acceptable, and we’ve accepted this as being just the way it is.

Anyway, this week’s appointment with the occupational therapist pretty much consisted of me telling her that we didn’t stick to the food plan that she had devised. We were supposed to make it so that Frances couldn’t eat the same food within a three-day period.

Yikes, that schedule didn’t go well. First, it represents change for which Frances has a low tolerance in general; secondly, we went on vacation and food sources were restricted mostly to restaurants. We did have a two-bedroom apartment for the duration, but our plan of buying groceries and eating in wasn’t as practical as we had anticipated that it would be.

Also, with the disruption of routines that vacations bring, we didn’t want to add to this stress by forcing a change in her eating at that point.

Now, this week, we are home, she is settled at school as well as in her social group, piano lessons, and horse riding lessons, and we are trying again.

I can say for certain that it isn’t “just picky eating”, and she really won’t eat anything if she gets hungry enough. She just won’t eat. So, a strict schedule involving foods that we know that she will eat is definitely the only path to take.

In contrast, Pink Cup Sister IS a picky eater. The difference is that there is no pattern to what she will or what she will not eat. She simply likes something or does not like it, and she is hard-pressed to tell you why either way: it tastes good to her or it does not. She also will attempt to eat what she doesn’t like if she’s hungry.

But, with Frances, it is hard work getting her to eat what she needs. It’s certainly in her best interests to keep trying and making sure that she has whatever supplements that she requires. There just isn’t much left in her range of acceptable foods after ruling out softness, room temperature, combinations, and differences in appearance.

Fortunately, Frances is very good at achieving goals, and I’ll help her do this, too.

She’s such a gentle soul that I always want to tread softly over ground that is difficult for her.

Social events and stress

Frances started crying and melting down as soon as she entered the car on the way back from day camp yesterday. At first, there was no identifiable trigger: we had no idea beyond possible tiredness what could have been bothering her so much.

The meltdown continued all night: eventually, as she related the behaviour of the other day-camp children and begged us not to send her again, we knew that the episode had a social trigger. Being around the other children had been very stressful for her.

So, we had a dilemma, Pink Cup Dad and I: allow her to avoid a social situation because she finds social situations stressful and she misses the opportunity to practice the skills that would help to ease the stress in the future; make her go and we add to her stress.

The best that we can do in that situation is to wait until the following morning to see if her reluctance to go is still present and determine what would be in her best interests at that point. 

This is what we did. She woke easily and got ready to go with only the usual fuss this morning — there was no reluctance to go. 

So, once there, I quietly informed the camp workers that she had been having a hard time and asked them to call me if she were to find the day too stressful.

In the past, we have withdrawn her from day camps after only one or two days; at other times, she has coped well enough to stay the course.

So far, we’ve had no calls or texts this day. This doesn’t mean that we will avoid a meltdown this evening; it simply means that she’s coping until the end of the day.

You can’t tell…

At Frances’s birthday party a few weeks ago, one of the well-meaning coordinators remarked that she couldn’t tell that Frances has ASD. 

Well, being very high functioning does help her in public, but here’s one of the (many) things that people can’t see…

Frances won’t go into a room, or stay in one, by herself, and it has been this way for several years at home and at school.

She developed differently in that respect. As a toddler, she didn’t respond if I left a room, and she didn’t mind being in a room alone.

As she aged, this changed dramatically, and it affects her life profoundly. Now, at the age of nine, she follows me from room to room (even waits outside the washroom), and refuses to play if someone isn’t in the room with her. We’ve tried a number of ways to help her overcome her fears, but nothing so far has worked. 

High-pitched screams, nonstop crying, repetitive complaining and panic, prevent discussion in the moment; discussion outside the moment has not been remotely successful.

This week, we moved her dollhouse to the upstairs hallway so that she could play outside the rooms and not feel alone (and Pink Cup Sister, Pink Cup Dad, or I could still do our own things). It’s not ideal as someone always has to be upstairs, but it’s a minor improvement.

Because she won’t enter or remain alone in rooms, and she won’t sleep alone, she is my very cute, very constant companion.

She now has a behavioural therapist (who specializes in ASD) who comes to our home weekly, and we think that this could be a very positive thing. She has only had two sessions to this point, so it is too early to expect any changes.

Still, I’m hopeful because some change, no matter how small, always helps in some way.

Laser tag

I think the following is a good example of how a high-functioning child with ASD can really struggle.

Frances wanted to go to a classmate’s birthday party to which she had been invited because, in her own words, she doesn’t usually get invited to parties.

I worried about it beforehand for weeks because of her sensitivity to sound as well as her tendency to become overwhelmed by her environment in general. I was worried that any meltdown could put a damper on a little boy’s birthday party, too.

Yesterday, she went to the party. She participated in all of the laser tag games with the other attendees.

She stayed close to the father of the birthday celebrant during the games of tag, and close to me in the party room, and she seemed to have had a good time.

Unfortunately, the special vest worn during the laser game weighs about 5 lbs. — and it made Frances uncomfortable. Specifically, her shoulders were affected. 

That’s all that she could focus on during the rest of the party, and she mentioned it to anyone who spoke to her.

I just kept redirecting her attention to whichever activity was occurring — emphasizing that we had to let her classmate enjoy his party — and that’s how we made it through to the end of the event.

All in all, I’d have to say that it was her first time making it all the way through a party, and she did well.

This morning, she didn’t want to go to school (no surprise) because of the discomfort in her shoulders — so, I kept her home for a couple of hours. She wasn’t happy to go, but I’ll know at the end of the day if she was able to get some enjoyment out of being there.

Progress

School mornings are difficult for Frances. They typically involve huge meltdowns and outright refusal to go to school. We do get her to school (where she does well throughout the day), but not without a great deal of effort to get her dressed, fed, and ready to leave the house.

Today, everything progressed in a predictable manner until there was sudden silence: I found her in the living room, rocking herself in a rocking chair. Ten minutes later, she was still rocking. Ordinarily, the meltdown would last until the teachers took over, but we stood a good chance of delivering her into their care without tears!

I ran up the stairs to tell Pink Cup Dad that he had to take her to school NOW while she was still so calm (and he did).

Now, I’m looking forward to seeing if the rocking chair works for her tomorrow as well.

Flashing lights

I posted recently about how change can produce meltdowns.

Yesterday, there was a good example of how too much visual information can produce meltdowns.

At the hospital at which she had an appointment, there was a test of the fire alarm system. Unfortunately, this partly consisted of several lights silently pulsing.

At first, Frances tried to hide from the lights. Then, in a darker area of the reception space, she got distracted by stackable molded chairs and the opportunity to climb and to rock.

But a headache had set in for her and nothing seemed to help: removing glasses, avoiding looking at lights, crying.

She definitely didn’t want to go to school afterward.

We’re very accustomed to sound bothering her, but visual things overstimulate her, too.

(She actually loves light and is very drawn to anything that emits light, but, in this case, there was just too much and she couldn’t control it.)