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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.

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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!

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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!

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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.

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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.