When I realised my child was different (the journey of Miss E possibly being on the autistic spectrum)

Posted by

The first thing Miss A (who was 3 years old at the time) said after meeting her little sister Miss E for the first time in hospital was “She’s sooo tiny”, followed quickly by “When can she play?” We laughed and told her it would be a while before the baby could “play” with her. Miss A had been longing for a sister even before I was pregnant again, so we were thrilled that she got a wish. In my head, I imagined them both playing happily together sometime soon in the future and couldn’t wait for that time to come.

One year passed, and Miss E hit all the usual milestones. She smiled, she babbled, she rolled, she crawled, she walked. The only thing was that after a few months of trying solid food, she decided to stop eating altogether. She would just chew but spit food out and not swallow it. We figured all kids go through fussy stages and the occasional food strike so we decided not to push it. She was still breastfeeding round the clock and looked like she was healthy and thriving, so we weren’t too worried. “One more year and everything will be easier and the kids will be running around playing together”, I thought to myself, imaging how Miss A was like at 2 years old, chatting away non-stop and running after her friends.

Then as the next year passed, the doubts started creeping in. The only words Miss E could say at 18 months were “row row” (for “row row your boat”) and “dada” and some form of her sister’s name. When we arrived at 2 years old, there were a few more words, but not many. Mostly she had a fascination with numbers. She could recognise numbers under 10, but could not yet say other basic things like “mummy”. Life still wasn’t anything I imagined it to be yet. It still felt very much like we were still in an extended form of the baby stage.

“You can’t compare her to Miss A,” people would say. “She was so advanced”. So came the problem of having a first child who actually talked early. We didn’t know what “normal” was.

We tried starting Miss E in childcare at 2 years of age. It was the same childcare Miss A went to and she learned so much there and really thrived. We wanted to give both kids the same opportunities in life. The first couple days were disasters. After 1-2 hours, the educator would call us in, saying Miss E wouldn’t stop crying and vomiting and as she wouldn’t eat or even drink water there, they didn’t want to stretch her out too much. Easing her into the new environment slowly was their approach. Every kid struggles at first but they all eventually settle in, they said. However, that day didn’t come for her.

After a couple more weeks, not much had changed. We tried every angle- staying with her for a while, slowly inching out of the room, leaving quickly, saying bye, not saying bye…The educators were lovely and allowed us to take as much time with drop off as we wanted, and to come in on her non-childcare days to stay and play with her and get her really familiar with the environment and the educators. To their credit, they really did their absolute best. They would even play her favourite songs and try to incorporate all her favourite activities to make her feel at ease…but each time ended the same way- with her eventually falling asleep on someone’s shoulder in exhaustion from crying the whole time, and us being called in after just a couple hours because she absolutely refused to eat or drink anything there. Unlike other kids, she just couldn’t get that we would eventually come back for her. To her, being apart was really the end of the world.

After two months of giving it our best shot and taking every approach we could think of, we decided this was no longer financially or emotionally worth it. Even though the educators were so willing to take her on, we knew it was hard on them too as she didn’t follow the schedule (she would fall asleep early with the crying) or want to do what anyone else was doing. Someone always had to end up just holding her. It was unfair on everyone, including the other kids the educators had to look after. It was time to raise the white flag. We took her out.

In Victoria, we have maternal and child health nurses who sees the kids for regular checkups from birth until they are 3.5 years old. Unfortunately for us, the nurse we were seeing did not pick up any red flags at Miss E’s 18-month or 2-year-old checkup. “There is such a wide range of normal at this age”, she assured us. As long as they are saying a couple of words, it is fine…apparently.

When Miss E was in childcare, I actually mentioned to the educators that maybe she couldn’t grasp the whole separation situation because she was “a bit behind”…and they actually seemed a bit horrified I would suggest that and assured me that everything she did pointed to the fact she was very intelligent. I think they thought we were perhaps coddling her too much (which we probably were to be fair) and suggested making her do things like walking into the centre herself and not constantly carrying her in the baby carrier to give her a sense of independence (which we did). Even after spending two months with her, just like with the maternal child health nurse, they didn’t pick up any red flags. 

As the months passed after Miss E’s second birthday, it suddenly became more apparent she wasn’t up to the speed of her peers. At 2, there is definitely a wide range of normal. However, at 2.5, it suddenly seemed like everyone was talking but her.

Then came the difficulty which is admitting to yourself that your child is behind. Every time I thought “Hmm…maybe we should chase this up”, Miss E would have a sudden burst in language or skills and make me think “Oh she will suddenly catch up and surprise us like she’s doing now”. There was a seemingly instinctive denial with thoughts like:

But the maternal child health nurse wasn’t worried.
The educators at childcare didn’t pick up on anything.
Are we just overthinking this and worrying too much?
She’s just delayed. She’ll catch up. Just give her time.

The thing is, Miss E could talk at that point. She had a lot more words at 2.5 years old. She could rattle off numbers, letters, and colours and name body parts and animals and all that. So it actually took us a while to realise that where she was lacking was that she wasn’t talking in a social manner. Yes she could point things out and say what the object was, but she didn’t answer social questions like “Did you go swimming just now?”, “What did you eat for breakfast?” Questions like that fly right over her head. She doesn’t even nod or show any non-verbal signs of acknowledgement. She knows her name, but if you ask her “What is your name?”, she won’t reply. She absolutely adores Miss A and follows her around everywhere and plays with her and they have lots of fun together, but there is no back and forth conversation. It’s Miss A driving the play and Miss E laughing, giggling and parroting her sister’s words and actions.

I also started noticing that she would get lost in her own world playing and would not even turn around when other people are making a loud noise or laughing about something in the same room. There was no natural social curiosity that other young kids have. There was no wonder of what other people were doing. (She has had her hearing checked and shows no signs of hearing impairment.)

I remember one day at home I passed the room where the kids were playing in and overheard Miss A encouraging Miss E saying, “You have to talk so we can play lots of things together and be best friends forever”. It made me shed a tear because I knew how much Miss A wanted a sister to play with. It still does just thinking about it now.

Finally my husband had to snap me out of my oblivion and emphasise that we needed to get a professional opinion on her. At worst, we get told she’s fine or just delayed. No harm done. So we booked another appointment with the maternal child health nurse. This time, we went to a different centre and saw a different nurse. The nurse listened to our concerns and booked us in for a Brigance test which basically assesses their development and skills. Miss E scored well below average on the test. My husband was the one who took her for the test and as he came home and rattled off the list of things this nurse had noticed in Miss E and about her test results, I was suddenly slapped with reality. Suddenly hearing a third-person perspective really drummed in the seriousness of the situation. I went from that natural self-protective mechanism of reassuring myself things were in my head and that they were likely okay…to suddenly feeling horribly guilty for not realising what was happening and taking action earlier. How could I be so blind? Why didn’t I push for a second opinion earlier?

From there, it was a whirlwind of action. With the test results, we went to a GP (general practitioner) who then made a referral to see a paediatrician at the Royal Children’s Hospital. Feeling like we’d fallen behind the 8 ball already and didn’t want to waste any more time, we decided to spend the money and go down the private route. Through the public system, you could be waiting for many months and we felt at her age with these being the crucial years in development, we couldn’t afford to waste any more time. Even through the private system, we had to wait two months to see the paediatrician.

While waiting, we signed her up for a heap of activities to socialise her as much as possible. We started music class. We joined three playgroups, one for kids on the autistic spectrum. We cut her screen time down drastically and read as much books to her as we could, borrowing heaps from the library and buying all her favourite books online or from stores. We made a conscious decision to talk more to her and narrate everything, something which is considerably harder to do with second-born children! I have never been so aware of the “first child privilege”. It does exist! I remember talking constantly with Miss A when she was a baby. But with her talking in my ear all day when we had Miss E, I just wanted peace and quiet!

With all the intense and sudden socialisation and endless words hammered at her, she seemed to improve a lot. By the time the paediatrician appointment rolled in, she was a different child. Yes she still didn’t have that social language or conversational skills, but she was certainly more interactive and coped better in social situations than she did previously. Her social curiosity also increased. When she saw the paediatrician, she smiled and say hi and bye to him. She pottered happily around the room exploring things as we spoke to him. He observed that she was actually social in nature and didn’t seem to have a lot of quirks autistic kids typically have like being fussy about certain things. She didn’t eat solid food until she was almost 2, but now she loves her food and is generally not fussy, unlike Miss A! She is also improving a lot with all the recent attention and effort we’ve been giving her.

So the diagnosis is still a question mark at the moment. It could be autism, it could just be a developmental delay, it could be something else. The main concern with her is just her social language. Autism is a spectrum and my gut feeling is that she is on it, just perhaps more towards the high functioning side so things aren’t black and white. The next step now is assessments with a speech therapist and child psychologist in a couple months’ time to rule out anything else, and then reconvene with the paediatrician to see where we need to go from there (likely speech therapy and occupational therapy). One thing which was reassuring is that he assured us there was no rush to actually go into therapy judging where she is now and how she’s currently doing. The risk of pushing too hard too soon is that they develop a negative association with therapy. Hearing that alleviated a lot of the guilt of not getting over my denial and seeking professional help earlier.

Seeing how much was suddenly improving and understanding in the last couple of months, I felt like the next step in her emotional growth was to wean from breastfeeding altogether, and sleep train her. Breastfeeding was definitely an emotional crutch for her, and she would ask for it whenever she was anxious socially. I felt like at this point, it was actually holding her back from growing emotionally. She was also just at the right age and mental growth point that I felt she could handle having her “comfort item” taken away from her and having to learn different coping strategies. I guess I will go into detail on a future post, as that topic probably deserves its own post. But in a nutshell, we went through the weaning process and sleep trained her and finally moved her out of our bedroom with her Miss A. It was rough for all of us initially for sure, but overall was such a positive move for her. She has learned new coping strategies and developed a good nap/sleep routine and is taking great pride in earning stickers for sleeping on her own in her own bed. 

So that is where we are currently at as of December 2018. Has this all been mentally and emotionally exhausting? For sure. However, I feel it was a short moment of being overwhelmed and now it’s turned into an intense determination to do my best for her. Just seeing the results of her improving so much from everything we’re doing makes it all feel manageable. I feel like I’m definitely in a good acceptance period at this stage. Acceptance that this is our life (filled with a flurry of activities and appointments) for the next couple of years at least.

From time to time though, I’d be lying if I said I didn’t mourn what could have been if Miss E was “normal”. At almost 3, she probably would be talking in sentences by now and emotionally capable of handling childcare and I would have the option of studying or working a regular job. She and Miss A would be the best of friends now running around and chatting with each other. To be honest, I probably mourn more for Miss A than myself because I know how much she wanted a sister…However, I then stop and remind myself that Miss A doesn’t actually feel she’s missing out on anything. She doesn’t know any different and absolutely loves her sister the way she is. She doesn’t need me to feel bad for her!

Through Miss E, I have gained a new perspective on life. All her social activities has forced me to get out and talk to new people (as an introvert, this is difficult but I’m learning). I have learned so much about the mind and body in researching autism. At the end of the day, it’s honestly not a negative diagnosis at all if she’s on the spectrum. It’s just who she is and how she views the world. She doesn’t have a life-threatening illness or severe medical condition that requires lifelong care. With help and support, most autistic people are able to integrate themselves well into this world and live very successful lives. There is nothing holding her back at this point. We are so blessed to live in Melbourne, Australia, where there is so much awareness and help is easily accessible. We are also blessed to be in a social/financial situation where we can give her the therapy she needs (not to say it won’t hurt a lot). Also, I kind of like that we’ve been able to enjoy this extended baby phase and appreciate all the little cute moments and milestones she’s been slowly making. Miss A was such an early talker so she felt so grown up so early and I can barely remember the baby/early toddler phase when they start mumbling words and saying cute things. So I will be lying if I said there aren’t dark moments, but at the same time, there are so many positives that I’m able to pull myself quickly out of the moment.

I will keep you guys updated as we go along. Until next post…

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s