My Son has a Speech Delay – Period

If you’ve been reading my blog, you’ll know that my five year old son, Lex, is speech delayed. He is not autistic, he does not have aspergers and he is not ADHD - he is speech delayed. His speech is delayed because when he was born, his tonsils and adenoids grew so quickly, they compressed his ear canals, and his ability to hear was reduced – which means if you cup your hands together and speak into your hands, you’ll have an idea how Lex heard the world. Unfortunately we don’t know how long this went on for or what he missed developmentally, because a speech delayed child isn’t deaf, so when it was finally diagnosed, we rushed him to hospital to have his tonsils and adenoids removed, plus grommets inserted in his ears. That was September 2009.

The reason I took him to an ear, nose and throat (ENT) specialist in the first place is because when he really started trying to speak – at around three years, nine months – his tongue was coming out of his mouth, not dissimilar to how I have seen hearing impaired people speak. Until this point, I wasn’t worried about Lex’s speech delay because I knew he was exceptionally intelligent and he was communicating with me all the time – just not with words. The ENT took one look in his ears and said he has compressed ear canals. He also asked about his behaviour – which was quite wild – and said this is typical of a child with these symptoms. He then asked if Lex snored. Yes he has snored since he was born, to which the doctor replied – no child should snore.

Since the operation, we’ve moved back to Singapore and Lex has been in speech therapy. His progress is astounding. But he’s not there yet and Lex is extremely frustrated with his inability to communicate and the fact people don’t understand him, which often results in bad behaviour – especially at school. But that is another story.

Lex will catch up. We are determined to do everything we can to help him do that, but right now he needs time, patience and love, but he also needs the people in his life to work just that little bit harder to understand what he is saying in whichever way he chooses to communicate. It’s not easy – in fact, it’s downright frustrating – but we know, without question, what we do now will set him up for life.

The problem is TOO many people around us are constantly pushing us to have him diagnosed with something else. These people are not specialists – in fact they are often people who have absolutely no idea what they’re talking about. Some people make observations gently, and are not offending us in anyway, but many people are downright rude in their assumptions. Yes, some of Lex’s behaviour is not dissimilar to an autistic child, BUT he is not autistic. He is speech delayed. The problem is, while a LOT of information is circulating around autism, aspergers and ADHD, speech delay and associated behaviour information seems to be lacking. Do a search and let me know if you find anything of value? I didn’t.

Based on my understanding (as a mother, not a specialist) a speech delayed child goes two ways – quiet or loud. Lex has gone loud and his behaviour is reflective of that. The good thing about him being loud is everyone knows there is an issue that needs to be fixed, whereas the quiet kids can get lost in the system. So that’s a bonus – we absolutely know to act.

When a child is speech delayed they often react with “difficult behaviours” to a situation, and if you’re not paying attention, oftentimes the behaviour is seen as bad or attention seeking. We work very hard to identify what happened before Lex “changes.” It can be a change of circumstances he’s not happy with; being with an adult he isn’t comfortable with; too much noise and chaos; people interfering with him – such as physically guiding him in a direction he doesn’t want to go and having his protests ignored, and so on. We don’t always know, but we do know that certain changes in Lex indicate that something happened and he is not happy about it. Slowly he is telling us what these things are, but we’re not there yet and he’s still at a stage of slipping back into physical, rather than verbal communication more often than not.

So a speech delayed child typically acts up because something happened before the “naughty” behaviour and the important thing is identifying what happened. Liz Elks and Henrietta McLachlan published some information somewhere (I was only given a copy of a couple of pages) and they listed out some advice.

What is the child communicating?
Be aware that the child is probably trying to communicate through his behaviour and look for what he is ‘saying.’

Use positive statements
e.g. “Walk in the corridor’ is preferable to “don’t run.”

Be aware of your own behaviour
How you respond to the child’s behaviour may be aggravating the situation, are you reinforcing the behaviour? Are you part of the problem and so part of the solution?

Consider the antecedents (causes) of the behaviour.

Does he understand the task?
Always check the child has understood what he has been asked to do and ensure that your language is appropriate to the child’s level of understanding.

Use structure
Reassess the structure being used. Does the child understand it? Is it being used?

Stress aggravates!
Remember that for most verbal people, communication is harder when they are emotional. This is also true of children with speech delay. The more upset they are, the harder they will find it to use appropriate language and communication, and so the more likely they are to resort to communicating through their behaviour.

Strategies based on pleasing others may not work
Children with speech delays are not often motivated by making others happy, and so behaviour strategies dependent on this are not effective.

This is the first time I’ve ever read anything that helps explain my son’s behaviour. It makes me wonder how many children out there are speech delayed and either getting lost in the system because they are quiet, or worse, diagnosed as something else, when what they need is to develop their speech?

I needed to write this blog because we have been under intense pressure the last few years with our son – pressure that has had an impact on every aspect of all of our lives, including our marriage – because we are dealing with something extremely challenging, and the hardest part is having people pressuring us into diagnosis of “something” because it’s important to be clear cut – Lex must be put in a box that can be ticked. If Lex was diagnosed in Australia with autism for example, the school wins because they get a specialised free teacher subsidised by the government, a teacher who invariably helps with all of the kids – so a free teacher. If he is diagnosed in Singapore, he can be kicked out of any school that does not have a philosophy of supporting “special needs” children. I will not allow my child to be diagnosed with something unless I am absolutely CERTAIN that the diagnosis is correct. If we get it wrong and allow Lex to be diagnosed, that’s it – he will think of himself as different for the rest of his life. That is what I truly believe.

The thing that no one seems to be paying attention to is the HUGE challenge this presents for the parents as they fumble around, trying to work out the best thing for their child. No one seems to appreciate how exhausting it is to work with a child like this to help them be their best. No one seems to understand that the external pressure to get your child diagnosed when you clearly know that this is not the issue is really NOT appreciated and it makes the situation WORSE. No one seems to know anything at all about speech delay and the behaviours associated. No one seems to have the patience and love to help a child who is speech delayed get through this time without judgement. No one seems capable of stopping and taking the time needed to understand a child who is communicating every day, just not with their voice. And no one understands how painful it is for the parents of a speech delayed child when the system decides they are too hard and gives up on them.

Lex has been through so much change and if people just had a little bit more patience, they could see that he’s getting there BUT it’s not easy for him, and all we need to give him is patience – lots of it – love, and probably the most important thing – we need to believe in our little man.

It’s hard though, we’ve had so many people put so much pressure on us. So many people have made our life so much harder. We’ve made dramatic decisions to ensure our children are OK, decisions most people would never have to make in their lives. But we’ve done it, because we believe in our little man and in his potential. We believe in him more than anyone else. No one can make us doubt him – no one. But we’re VERY strong, stubbornly so, and while that might not be a good thing all the time, I believe it is when it comes to my son.

I’ve written this blog for other parents who might be going through what we are going through. We don’t know anyone else going through this, and that in itself makes it extremely challenging, so if you know anyone, please do share this with them. They need the help, just like we need the help – and sometimes it’s nice to know you are not alone, and to know that your confidence in your child is valid. Trust us, it is.

And to those parents who share similar experiences, I say this – if your child has a reason for being speech delayed and you’ve dealt with the “reason” – all you can do is insist that everyone gives your child love, patience and the time necessary to help them catch up. As our specialists say – this is not a quick process. Also tell anyone who doesn’t know what they’re talking about to piss off until you get your child up to speed – only listen to specialists that you TRUST and know what they’re talking about. We have met some specialists who did not earn this trust. The need to diagnose is very strong in some. The reality is, some of our children may indeed end up being diagnosed with a behavioural disorder after we’ve done everything we can to help them catch up. However as parents, we need to insist that the “system” gives us the time we need to get our children through the entire process with speech therapists, occupational therapists and behavioural therapists before any further steps are taken. I know how hard this is, but please, until this is done, DON’T let any other person convince you to change your path.

You know your child. YOU. No one else does. So try and resist the pressure people put on you – even when they think they are doing the right thing. With that said, following this path means you may suffer as we have, with Lex being kicked out of schools because we wouldn’t get him diagnosed with anything other than speech delay. If it helps at all, just know that there are two parents sitting in Singapore who really know your pain.

Parenting is hard under normal circumstances. It’s intensely challenging when your child is speech delayed. It’s overwhelming when everyone around you thinks they are an expert about your child. BUT it is downright despairing when people give up on your child because it’s just too bloody hard.

Be strong, find a community facing similar challenges, and even though the pressure can be so intense it almost breaks you, hold on for your child.

Yours, without the bollocks
Andrea
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