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

Comments

Anonymous said…
I am no expert, but I think far too much labelling of young kids goes on. In my experience of working with SEN kids in mainstream primary school in the UK, the motivation for getting kids on the SEN register wasn't always to do with directly helping the child. Having said that, the result of a child getting on the register (for various reasons - often to do with being "on the spectrum") would be additional one-to-one time with an appropriate adult within the school, which did benefit the child. I feel sad that a child would have to be given this label, just to receive support, that I think 30 years ago, would have been provided by the class teacher, because their class would have been smaller, therefore the teacher would have been able to give more of their time to individuals. I say blame the system and culture - not the teachers!

I'm not sure if you know, but 'A' has poor concentration skills, she is a proper day dreamer (like Alice in Wonderland!). I have had various people (friends and family) suggest that I should see if there is a reason for her being like this!!!! WTF??? Like you, I am in no rush to label my child. Why can't it just be a personality trait? Why does there have to be a 'problem' to investigate. Too much faith is taken away from us parents to make appropriate decisions for our kids.

Good luck with everything to do with getting Lex's 'voice' heard.
Cx
I've been wracking my brains on who is C with daughter A in the UK, then I saw your book comment and worked it out. I CAN'T believe that A has had anyone questioning her - she's an amazing little girl!!! I hate the labeling, I hate the ignorance too and while I agree the support structure is mostly good, it's not always good when your little one needs something else. It's definitely a mindfield xxxxxx
Michael said…
Andrea, Knowing Lex's personality and all of his funny little traits we spent plenty of good quality time with him here in Australia and we beleive he has a strong personality and a very big heart all kids can be naughty and loud at times and let me tell you our Max is now 2 and he is no different to Lex or Jax for that matter, Loud when he needs to be heard or understood and loving and quiet when he he feels safe and understood. Good luck with his progress I'm positive he is strong enough to make up for the lost time and he will become the amazing person we all know he is destined be. XXX
Michael darling, it's so nice to hear from you - when are you going to accept my skype invite? We'd love to say hello to you guys!!!! And you know our boys, so you know what I'm talking about. These days Lex is all chat, chat, chat.... sometimes I wish he'd just... no I can't say it!! xxxxx
Shannon said…
WOW your post is MY LIFE....I'm dealing with this RIGHT NOW or have been. THANK YOU FOR THIS!!!!!!
Shannon, I'm so glad that someone out there can say I'm dealing with this. As you may also feel, it can feel very alone in this world, so it's good to know we're not, and all we can do is believe in our kids and filter out everything around us that just confuses things and doesn't resonate with our own experiences. Thanks for reading and responding - I really appreciate it. It's a slog, but our kids will get there xxxxxx
K A B L O O E Y said…
Wow, this resonates with me. Your post makes some of my daughter's past behaviors explicable; never before have I connected them with her speech delay, but they very well might have been. Hmm. Thank you. And keep trusting your gut and doing what you think is best, because you know your kid better than anyone.
Hey Kablooey, I think that's the thing that gets to me the most, everyone is trying to link the behaviours to something else, because there is such a small amount of information tied to speech delay. The problem is no one knows enough about it and I won't allow my kid to be diagnosed with something unless I am absolutely convinced they're right. It's the inconsistencies that have always stood out to me. I worry for parents of kids not as strong as me. What sort of harm is being done in a society so keen to diagnose kids? I just want my love to be OK and I'll do what ever it takes to get there. Sometimes it's a fight though.... as you well know xxxxxxx ps thanks for reading and feeding back xxxxx
Anonymous said…
I'm in the USA. My youngest has "moderate to severe" speech delay. You are most definitely not alone. Mine is the "quiet" one.
Thanks for commenting and in some ways, you're lucky you've got a quiet one. I've got one climbing the walls with frustration and it is his volume and associated behaviour that attracts the unwelcome attention... xxxxx
Fidj said…
I read this almost in tears as I am at the end of my tether with my situation so similar. I need someone to talk to as I am in the uk and they seem so quick to label here, there must be a reason! We beleive our loving little 3 year old boy is speech delayed only, he went to the school nursery where we had a meeting as he was having tantrums as he can't communicate so well at all, then the next week we were called in to the headmistress with the teacher and told all these things about him that we did not see at all at home. I understand they may see things at school but feel they are looking into other behaviours BECAUSE he can't speak well. I told them this. We have countless discussions saying the same thing and they seem to be ignoring what we are saying. We saw the health visitor who didn't seem worried, that didn't plese them as they want one to one for him as they have 25 other children, now on mon we are seeing a developmental peaditrician, they have written a left which I opened to read and if you read it would say he was autistic and he is so not! Like what we have said has been not listened to . They are a good nursery who are trying to. Help our son and I understand he may need the one to one to help him but not saying things that we do not agree with to the professionals. I am fighter and so is my husband, my dad is a scientist so we will fight to do what's right, hence so many discussions as we just won't lie down and accept it. One minute they say speech the next saying he is more like a toddler etc. so we are following the channels but I won't have him mis diagnosed because they need funding for one to one. I feel scared, frightened , alone and am fighting for our child. Just feel like I need some advise and support as we are currently dealing with all this. Thanks it helped reading this blog so much
Fiona
Andrea Edwards said…
Oh Fiona, I read your comment in tears, because I know EXACTLY where you are and I’m so glad I wrote this blog just so you know that you’re doing the right things and most importantly, that you’re not alone - because someone else is out there fighting the same fight. I don’t think the UK is any different to Singapore or Australia and while the system in place to support special needs kids is awesome, it’s not awesome when you’ve got a kid sitting in the middle. I know you’ve got a long fight on your hands. I know you’ll sacrifice a lot on the way to getting your son on track – money, career, time, emotions, heart break, etc… - because that is what it has cost us. But your little lad is so lucky his parents believe in him, so I’m here if you need to “speak” to someone, because it’s hideously hard. I’ve never known anything like it I have to say, but we finally found a speech therapy-focused school and that is what Lex needed. Once again we’ve been told he’s fine, he just needs to catch up on his speech and learn to manage his behaviours, and even though it is costing us a fortune to send him there, when he “graduates” we don’t believe there will be anymore bollocks. I know he’s absolutely 100 per cent fine, it’s the pressure from everyone else that does your head in - including putting pressure on you to diagnose a kid with something they aren’t to get the funding to support them. It changes everything – how the world looks at your child, how your child looks at themselves, and most importantly (and the most damaging) how a parent looks at their child. I think if I ever cross that line, then I will be doing the greatest damage I can to my child, and I know him – I not only know how awesome he is, I know how challenging he is – but I will not be forced into misdiagnosis. The problem is by making the stand we’ve made, we’ve made our life harder, but in the long run, it will be worth the sacrifices. So I’m sending you and your family all the love in the world and just hope you can get through this time as smoothly as possible, and “see I was right” when you make it is the sweetest thing of all xxxxxx
Andrea Edwards said…
Sorry Fiona, I meant to say - when reach the milestone where you can say "see I was right!" - it is a very sweet feeling indeed! Don't give up xxxxx
Mumof3boys said…
Thanks Andrea for sharing about Lex so lovingly. Our 3 1/2 yr old little man has speech delay and we are in the process of further assessment. However, I am so certain that we are not dealing with anything else.
Like you I have found it near impossible to find info and support for families who are dealing with speech delay. Our son gets very frustrated and often destructive when he can't express himself. Can you recommend any strategies or books that give insight into behaviour management for children with speech delay? We are having such a challenging time and don't want him to be labelled as the "difficult child" as he moves into kinder and eventually school.
Thanks again-your blog post has been a Godsend!
Stacey
Andrea Edwards said…
Hi Stacey, I can't tell you how much it means to me to get your comments, because like you, we were absolutely lost and trying to work it out amongst all of the external pressure - and that's on top of what we were already dealing with!! Also like you, there was nowhere to go for information. However, you have reminded me. I started a blog a couple of months back with a whole bunch of links to books and research but I didn't finish it. I'll also put together the things we learnt - by ourselves and through some of the good advice we got - hopefully it will help. If you post another comment with your email address, I'll send it to you but won't publish the comment. As it's an old post, comments need to be moderated, so that means I can keep your email private. Keep strong and fight for your little love - it is the hardest battle I have ever fought in my life!! Big NY love, Andrea PS: promise to post that blog soon xxxx
Anonymous said…
Thank you for the beautifully written piece...my daughter just turned 3 and she has speech delays. When she was born I promised myself that I would give time, space and love she needs to grow and discover who she is at her own pace without pressure. Despite a little help we are giving her with speech therapy I am strongly holding on to my promise, even if it means us against the whole word!

I could say a lot more but then I would ramble too much and you have written most things I would say!

Thank you.

Ck
Andrea Edwards said…
Hi CK, I can't tell you how much it means to me that you took the time to comment and share your experiences. Parents who are not going through this really struggle to understand what it is like for us, and how many times we experience a dagger in our hearts. Good luck, stay strong and just know you're not alone. Your little girl is lucky to have you fighting her corner. Many parents are so overwhelmed by the professional advice they get, they struggle to resist the pressure! It's bloody HARD!! I am planning on writing a really long blog on our experiences and lessons learnt. Will try and do it soon. If we can all share and learn from each other it will make such a difference - especially as there is nowhere else to go xxxxxxxxxx

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