D-day

This is my lovely boy, the apple of my eye, my first baby. He filled me with great joy when he was born…he made me a mum, and that has been a big title…a huge one! Not just because it is my role as a mum to teach him a bunch of life lessons, but because it has been me who has had to learn even more to be able to bring him up the way he deserves. There have been many kinds of tears along the way: tears of joy, excitement, frustration, fear, love, lack of understanding, pride…tears of not knowing how to react, what to do, how to help…tears of feeling helpless.

It was a very important day yesterday for our family because we have finally been given his ASD (Autism Spectrum Disorder) diagnosis. Autism is not an illness nor bad parenting, it is not caused by vaccines and dedinitely not something I or we have or haven’t done. Autism is a condition which means Antony does and feels things differently to other children. He struggles with communication and expressing what he is feeling, for example if he has a tummy ache or a headache or if he’s just feeling a bit sad. Imagine the impotence of seeing your child complaining because he is in pain but you can’t do anything because, poor little thing, he can’t explain what he’s feeling or where it hurts or the frustration of seeing your child crying and agitated because he can’t explain this or that and doesn’t fully understand reasoning…it’s heartbreaking!

It’s been a few years of difficult times trying to make your little voice come to light, seeing little words, phrases and sentences flourish little by little. His speech is still very tender, and yet he is bilingual…he understands his mami and daddy, it’s amazing how he knows which language to speak according to who he is talking to. It amazes me when I hear him reading and count to 1000 and beyond non-stop. I love his brilliant memory and the happiness he radiates day to day…and those massive cuddles he gives!

I love him more than life itself! I love how clever he is, his joy and his energy…oh how I wish I had at least half that energy! I love him with his obssessions and repetitive behaviours. I pray to God for wisdom, patience and strength (because there are days where tiredness takes its toll!) so that his dad and I can bring him up and guide him throughout his life. I love you, my dear son…sweet boy of my heart! I celebrate who you are and I hope the world can get to see the purity of your soul.

The Good Doctor

As most people know, the US churns out hospital-based TV shows by the bucketload. This year I heard about a new one, and it obviously interested me. It centres around Dr. Shaun Murphy, a young surgical resident starting his first placement in a leading-edge hospital. The twist is that he has autism spectrum disorder and savant syndrome, which means he’s brilliant at what he does but sometimes has difficulty communicating with his colleagues.

It’s an intriguing concept, and certainly a brave one. ASD is already pretty poorly understood by the general public, and as it’s such a wide spectrum, there was a great risk that an unsympathetic performance might simply reinforce the stereotypes.

Thankfully, Dr. Murphy is being played by a brilliant young actor, Freddie Highmore. Like all the best actors in US TV procedurals, he’s British putting on an accent. So a British neurotypical actor is playing an ASD/savant American doctor. And it works.

It’s made by the same people who created House. However, Dr. Murphy isn’t played like House was: he isn’t arrogant in his superior knowledge, he isn’t deliberately abrasive with his colleagues. He’s flawed, yes, but he’s also funny – sometimes deliberately, other times not so much – and I suspect many of us can relate to what he’s going through.

While most episodes are thought-provoking, the one we watched most recently was even more so. Spoilers follow, so skip the rest of the post if you haven’t seen the episode “22 steps” yet.

Dr. Shaun Murphy (from abc.com)

In this episode, Shaun treats a patient suffering from ASD. However, his symptoms differ greatly and Shaun struggles at first to relate to this patient (as he’s never met another person with ASD). The situation the patient is in is obviously stressful, and Shaun eventually connects with him using numbers – hence the title – as a way to help him self-calm.

The thought-provoking part of the episode for me was how the patient’s parents coped with the situation. They took all the decisions about his treatment, including trying to get Shaun excluded from the surgical team because they were afraid that his “limitations” would put their son’s life in danger. They were so focused on what their son couldn’t do that they’d stopped seeing what he could do.

It made me wonder. Do I do the same thing with Antony? Do I limit him because there are things I don’t think he’s capable of doing right now? I make sure to hold his hand whenever we walk by a road; should I let him be more independent and walk on his own? Should I allow him to choose his lunch at school even though I don’t think he really gets the concept of it? Should we let him decide what to wear or when it’s time to go to bed?

I don’t want to be that controlling dad who prescribes everything that Antony does. I want more than anything for him to be independent, but I worry that giving him that independence might be the wrong thing to do. What if he runs into the road and I’m not quick enough to catch him? What if he chooses a meal and it’s not what he wanted and melts down when he can’t change it later? What if he chooses to wear just his underpants and melts down when we try to explain how impractical that is? What if he chooses to stay up all night watching the same episodes of Paw Patrol over and over?

Every parent goes through this, I’m sure. There’s no handbook for parenting but I think it’s reasonable to say that there are rough guidelines. I don’t think even that exists for children with ASD as they’re all so different. You get to know your child and their “limitations”, and act accordingly. But what this episode brought into sharp focus for me was that I’m not going to accept that Antony is limited forever. I accept that there are certain things that are problematic right now, for definite, but I’m not going to lead with the assumption that it’ll always be the case. So yes, I’m going to continue holding his hand until I’m sure that he isn’t going to run into the road. But also, I’ll give him the chance to choose his meals and if he melts down we’ll back off and try again later. I don’t think it’s right to insulate him from the things that make him anxious, but I also don’t think it’s right for them to be right there in his face if there’s an alternative.

Language development

I’m not an expert on language, and certainly not on bilingualism. Sofi is far more qualified than me to talk about this. However, I have some observations on how Antony’s language skills are developing and how I think that it works in his little brain.

There isn’t an awful lot of literature about bilingualism in autistic children. What there is shows what you might expect: it tends to vary. Studies on bilingualism in general tend to show that as long as the child is immersed in both languages, there’s no reason why they should suffer a language delay (though, like all children, some bilingual children do have delayed language).

One of the first signs with Antony that there might be something different going on was that he didn’t hit many of his communication and speech milestones. He was late pointing at things, late with his first words, etc. He used a lot of babble instead of real words. So when he actually started forming syllables (‘da’, ‘ma’, etc.) it was a relief for us. Unfortunately his communication development has been a slow and sometimes frustrating process.

He has a lot of vocabulary. He’s always been good at identifying objects, animals, people. He’s particularly good at remembering names. I’m pretty sure that he understands what we’re saying most of the time. Most vocabulary he has in English he also has in Spanish, and vice versa.

What I find really interesting is that when Antony learns vocabulary it tends to come in both languages at the same time. This is particularly obvious when it comes to abstract concepts. An example:

Every day when I pick up Antony from school we walk home. As part of that routine in an attempt to help him communicate, I ask him certain things about his day. These are questions like: “Did you have a nice day at school?” and the response is usually “Nice time at nursery”. These are phrases that Antony has learnt rote and that he tends to fall back on. I also ask what he’s done during the day and I’ll sometimes get one-word answers like “glueing”, “painting”, “slide”, etc. So to try to elaborate I go further: “Did you play out today?”. Usually I just get a “ye” answer or silence. But earlier this week, out of nowhere, Antony answered “not play outside today”. Mind blown. Where did that come from?!

This abstract concept that Antony had just switched on (being able to say what he hasn’t done rather than what he has) played on my mind until I got home. I wanted to see if it was available in Spanish too. So, arriving home, I asked Sofi to ask him if he had played outside. I phrased my question so that she wouldn’t get where I was going — it’s really easy sometimes to give Antony prompts and not allow him to work it out for himself. So, she asked something along the lines of “Antony, jugó afuera?” [my apologies to Sofi if I got that wrong!]. He answered “no jugó afuera”.

Now, he still hasn’t got the hang of his tenses yet so tends to just repeat the tense as per the question, but wow! he applied the same concept of not having done something. This is new and it happened in both languages at exactly the same time!

The way I like to think of this is that rather than having one language centre in his brain like monolingual children, Antony has formed a more complex structure. He effectively has two ‘bins’ – one for English vocabulary and grammar and one for Spanish. On top of that, he has an abstract concept processor which deals with things like “not having done something” in a language agnostic way. His clever little brain code switches to the appropriate language / bin, picks out the grammatical construct and vocabulary for that language and then drops out a fully formed sentence. To me this makes a lot of sense. It also makes sense that it’s this abstract concept processor that Antony’s brain has trouble with, and that’s where his communication delays are. It must be incredibly frustrating to understand what you’ve been asked but have no way of framing a response.

I wish we could get inside his head to know what he’s thinking…

Envy & Pride & A Hat

Antony’s school has a Twitter account that they use to keep parents informed of what’s going on, sharing pictures of children doing their work, etc. They highlight children who’ve done something amazing, such as being kind or excelling at a particular task.

Sometimes, when I see other children from Antony’s class featured, I feel a pang of envy. It’s completely irrational, but it’s there. As a parent I feel that Antony should be featured every day because of what he has to overcome just to do what for other children is normal or natural. When he strings together a 4- or 5-word sentence, I want to hold him up in front of the world and shout about how amazing that is, and how hard he’s trying.

We had parents’ evening today. This was our first one — when Antony was at nursery we talked to the teachers pretty much daily so knew exactly what was happening. It’s a bit different this year; we have a decent idea of how he’s adapting to full-time school, but not a lot about how he’s doing academically. Well, let’s just say that I’m full of pride after our meeting. He’s excelling and struggling where we thought he would — his photographic memory means he’s picking up phonics and numeracy skills really easily, but he struggles with fine motor control and in the social and communication aspects. But he’s settled really well, and everyone seems to adore him.

In a day that was full of firsts, Antony went to school with his special hat to protect against bumps. He was so excited to wear it playing out, especially as all the other kids were interested in finding out what it was for. I know that the other parents will see him wearing it and wonder, but while part of me doesn’t want him to be obviously different, I prefer him to be safe.

Being bilingual and other fears.

When Antony started nursery earlier this year, a part of me was gearing up for a possible talk from his teacher, simply because I knew my child, I knew the whirlwind he is and I have always known he wasn’t your everyday child. I have always thought he was different…special!

When we were told he might be on the spectrum, I crumbled, though. A bunch of uncertainties and insecurities grew on me. I hated to think ‘I knew something was up’ and wondering whether I should have done something earlier. I started blaming myself, trying to think what I may or may not have done that caused him to be what he was. Had our parenting been poor? Had I done something during my pregnancy that caused him harm? Had I been a bad mum? Why was this happening? Why was this happening to our first born? I wanted to pinpoint the cause of our dilemma so badly.

Since that talk we had at school, our journey for a diagnosis began. I have lost count of the many questions we’ve been asked regarding our son’s behaviour. When we have to explain and go through his array of peculiarities, I can easily point the time and day he did something astonishing or when he had a bad meltdown. I feel my brain is turning into a catalogue where you can find things that trigger meltdowns, methods for coping with X or Y situations, things he likes and dislikes and of course…everything about his ‘Antonysm’, that’s how I call his little world.

Personally, dealing with his speech and communication issues has been one of the toughest experiences I have dealt with in my life. Because of my background in linguistics and keen interest in language acquisition in children, it had always been very important to me to play an active role in the development of my offspring’s speech and communication. I hail from the warm and humid tropics of Central America and so, as a native Spanish speaker, it was also crucial to pass on my mother tongue. Therefore, we decided to bring any children we would have bilingual.

Slowly but surely, we saw little words coming from his mouth in one language then the other language’s would appear soon after. But then, one day, we felt his speech was not developing as fast as other children his age, and there was the ‘he is bilingual, maybe his speech is delayed because of that’ kinda thought. I kept having that nagging feeling that there was more to it than his bilingualism.

I even fell into dark places of not trusting the way I have been bringing him up, where I wondered if being bilingual caused him any delays and I hate myself for falling into that trap, because, deep inside, I don’t think being bilingual is causing him any detriment.
Research on bilingualism in autistic children is scarce; experts haven’t found whether being bilingual is harmful for children with autism. I have been given advice from well meaning people in the past, telling me that perhaps it may be better to speak to Antony only in English, but my gut tells me that I ought to stick to what I have been doing since he was in utero – talk to him in my native language- simply because that is what comes naturally to me.

Antony amazes us. Every time he learns a new word in one language, its counterpart comes soon after and he gets it!
For example, if he wants an apple and he asks me in English, he immediately corrects himself, without being prompted, and goes for ‘manzana’ and it happens the other way round, too. He knows which language to use for the people in his life.

When I was expecting Antony, I looked forward to his first words and little sentences, I looked forward to his first curious questions and those ‘But why?’ moments. And then, as months went by, a delay in his communication skills became more and more apparent, and I became more concerned, wondering what I was doing wrong, why my little boy wasn’t saying yes or no, why it wasn’t until he was reaching his second birthday that he started calling us ‘Mami’ and ‘Daddy’.
I am no speech therapist, but there are moments I wish I was…the moments where I see how frustrated he gets when he can’t let us know what he needs/wants, when his efforts to speak end up in an agitated babbling that turns into meltdown and/or tearful screams. I often struggle to hold back the tears…and fail.

Even though I have got over that initial “shock” of the news, I can’t help but feel worried about the future:
• I wonder how Antony will cope with education and learning…I know he has great potential because I know he is very bright.

•I wonder if he will be able to pursue a career. I keep thinking whether he will get to go to university and study something he loves.

• I wonder whether he’ll be able to find a job that fulfills him and gives him a sense of achievement. I want him to realise he can be useful to society and feel proud of himself for doing so.

• I wonder if he will make friends along the way, if he’ll find people who cherish him and enjoy his company.

•I wonder whether he’ll fall in love, if he’ll find someone who will love him for who he is, with the good and the bad times. I hope he will find true love.

We may go through tough days with him, but we also have some pretty amazing days with him where he surprises us. We can’t stop and complain about our situation. What we have to do is support him along the way, be there for him and give him our unconditional love and patience. My son is a pure soul and I want everyone to know it!

It was going so well

One of the issues we have with Antony is that for numerous reasons he tends to bang his head. If he has a meltdown, he’ll throw himself to the floor. Sometimes he’s running and gets distracted and trips over himself.

So we get big bumps on his forehead quite often. It’d been a few weeks since the last one and he’d had a really good week. His teachers told us that he was really settled yesterday morning and he’d been a star eating his lunch.

Sod’s law dictates that such favourable conditions can’t persist, so at lunch he fell and banged his head again. School react like you’d expect when a child has an egg-sized lump suddenly appear on their forehead. Suggestions that we take him to the doctors or A&E. Now, we know that Antony is prone to bruising on his head so it didn’t worry us as much as them.

From experience I know that the GP won’t see him for a head injury. They’ll send us to A&E, but a 5 hour wait isn’t great when the patient struggles to sit still for 5 minutes. As always in this situation I call 111 – this makes sure the incident is recorded and we get advice from a professional. It’s usually the same: don’t let him sleep for more than an hour, call 999 if he goes unresponsive.

Thankfully this time he recovered quickly and after a dose of paracetamol he felt much better. But it pushed us over a line we’d hoped not to cross. We’re going to buy him a head guard. We talked to his headteacher about it and his concern was the same as ours – it’ll make him stand out on the playground. But safety is paramount. Now we just have to figure out how to get him to wear it!

Good days and bad days

Like everyone, we have days both good and bad.

A good day is like last Tuesday: Get Antony to school without fuss, he amazes us all by sitting through a 90 minute long pantomime, eats his lunch and his tea and goes to bed without complaint.

A bad day… well, I don’t have specific examples, but those are the ones where Antony comes home with bumped head notes where he’s had a meltdown and headbutted a door.  The ones where he refuses to eat his tea, the ones where he works himself up into a kicking, screaming mess because he wanted to wear a coat even though he’s indoors and it’s really warm. The ones where we put on our smiles and pretend that it’s all okay and that we’re coping. The ones that end with us wondering what we’re doing wrong.

Thankfully the good days far outweigh the bad. Both Antony and Lucas bring us so much happiness, and we wouldn’t change them for the world because who they are is amazing. But we are only human.

Autism

I felt it appropriate that my first blog entry is about the A-word. It’s the reason I decided to start blogging, and the thing that’s at the forefront of my mind every day.

Autism.

It’s a small word but means a lot. Word of the year for our family, I’d say.

We’ve known for a long time that Antony is different. Physically he hit all his milestones, but his language and social skills were always delayed or non-existent. As a toddler, eye contact was rare. He’s a little whirlwind — I’m pretty sure that he learnt to run before walking. He has an affinity for numbers and sequences in general.

Antony is 4. He started nursery in January of this year. We’d already deferred his start for a term because we didn’t feel he was ready for school. His language skills were still very basic, he wasn’t potty trained, he struggles to concentrate. We met with his nursery teachers, and they agreed it’d be best to wait as the January class was going to be a lot smaller.

A week into his time at nursery, we heard those dreaded words: “Can we have a quick talk about Antony?”. I think we knew what was coming, we’d discussed it a few times. “I’ve had a few children in my class who are on the autistic spectrum, and I think Antony is too.”

I think his teacher was worried we’d go into denial. We didn’t; we’re pretty pragmatic people, and our only concern is that Antony be able to learn. You see, we think he’s quite clever. He has an incredible memory, and is an amazing problem solver. They referred us to the Autism Pathway, and that’s a journey we’ve been on ever since.

Antony still hasn’t received his diagnosis. He started school proper this year. School, for their part, have been great. They’re giving him one-to-one support even though they don’t have funding allocated yet. They’ve set him up with a visual timetable and adapted their routine to minimise change. They’re getting specialist support in to educate his key personnel.

He’s seen a paediatrician and speech and language therapy has started. Best case is that we get a diagnosis in April next year. It’s a long process, and we’ve come to learn that the NHS gets an overwhelming number of referrals. We were told that we’re lucky his referral came before he turned 5; there’s a two-year waiting list for older kids.

So. We don’t know if Antony is autistic. We sort of know that he is, in that he struggles with communication, in that he does not play with the other kids in his class*, in that he has meltdowns when his routine changes, in that he repeats learnt phrases rote. I know that “autistic” is just a label. I know that nothing changes if and when he gets his diagnosis. But it would dispel those nagging doubts: Is he just a bit delayed? Is he just being naughty when he refuses to eat his tea? Should we discipline him more? Are all kids like this?

My hope is that this blog will help us connect with other parents who’ve been through this. Even if nobody reads it, we can hope for a little catharsis on those… challenging days.

 

* He does love to give cuddles to the other kids. He gets excited to see them and knows all their names. He just doesn’t actively play with them or talk with them.