Communication disorder is NOT a delay!

[Skelosia]

I was recommended to come over here for support etc re: my DS, but thought, no, I'm okay. But, although I am okay, sometimes I get so frustrated with people not understanding that it is a disorder etc that I should come here just to vent.

To bring you up to speed:

My DS who is now 7 was finally diagnosed with a Communication Disorder last year. We always knew he was different. We checked for Autism and Deafness, before it got settled that it was a 'simple' SLI (For those who don't know, that means a Speech and Language Impairment). I think his official term is Auditory Processing Difficulties. He had an ABR, but his auditory nerves are responding effectively. But it is what happens after that is his issue. He hears the words, but he can forget them, or get confused by what is meant, and cannot express himself as he struggles with word finding. It sounds a lot worse than it is. He CAN speak, he CAN process instructions. But not always and not always effectively. It also takes a second or three for him to respond (hence the deafness suspicion). There are things which are found in children with ASD, such as an inability to get that 'Pull your socks up' does not mean literally, that others have a different view to him (he can get very agitated if you find something funny and he doesn't/doesnt get the joke) and a change in routine has to be planned in advance to prepare him. You won't have a conversation with him, unless he initiates it, and he will repeat the same information several times. His life is affected by it, albeit subtle-y(sp?), unless you are a care giver. He can come across as rude, as sometimes he will not reply to you at all.

So as you can see, there is a problem, and it isn't developmental, it is a disorder (why am I justifying myself here? You have all probably been there and got the T-Shirt).

Today, I was meeting up with a friend and got onto the subject of DS. She told me to not worry, that he will grow out of it! FFS Seriously???????????? I told her rather sharply that he will never grow out of it. Trust me, I would much prefer it if he did! All that can be done is SLT and giving him strategies and support to live a relatively normal life. Then I think that this is what all parents do, isn't it? But I know no different. He is so far my only child. I have no idea how I will cope if my new arrival is 'normal'. Life is never dull with a child who brings you a box of nuts when you asked for your boots! I just wish people would understand that it is a real thing, that has real effects.

Since DS has had the diagnosis and been on the SEN register at school, he has improved tenfold. But I still see the problems behind the bravado. He is just coping better now as he is not fighting everyone to be understood any more.

Sorry for the long post, but it gets my goat. Especially as his behaviour could never be put down to poor parenting - except perhaps the rudeness.

Anyway, hello

[Ineedmorepatience]

Hi skelosia I have a Dd who is 10 and has a dx of Asd. Communication is a big problem for her, she can talk the back legs of a donkey but actual communication is a different matter, so I know what you are talking about.

She often has word finding difficulties although probably not to the extent that your Ds does. Yesterday for instance she was trying to clean something sticky off her drink bottle, she was standing by the sink flapping as she does and she said "I need a wipey thing". I asked her what the name of the wipey thing was but she really struggled to think of the word.

She has big problems with sounding rude as her language is abrupt and if someone asks her a question she will answer it. I have learnt never to say things like, "would you like to get your coat on?" as she will answer "No"

I find it hard when people say they dont see a problem with the way she is but then will look down their noses at me when she is having a moment.

You have definitely come to the right place

[Skelosia]

Hi Ineedmorepatience thanks for the reply

Yes, that word finding comment is apparently common in children with ASD and communication difficulties. My DS doesn't do that - though I wish he would! Instead he just stops. Then it is an investigation. Sometimes I can help him if I have a good idea of what he was going to say, but sometimes I can't!

I am a better person though, for having to deal with DS. Not just since the dx, but before too. I have more understanding, more patience (some of the time). DS has taught me so much, but most importantly that mum knows best!

[Asheth]

Hi Skelosia! How long did it take you/S&LT to recognise it as a disorder rather than a delay? My DS is 4 and sounds very like yours. We're about to start S&L therapy. And I must admit I'm clinging to the hope that it is a delay and he will 'grow out of it'!

I tend to lurk on the SN boards, particularly on threads to do with ASD as I'm aware that I can't 100% rule it out at the moment.

[kalpamum]

Hi skelosia. I have a 12yr old with complex difficulties, she under S&L but much support at school for difficulties that a very similar to your DS. I was told and though myself that she would grow out of difficulties but has not! Can I ask what support your DS is provided with, I have an appointment next week with school and S&L and would like some ideas. Thanks

[babiki]

Asheth, the word 'delay' does not automatically mean that children will 'grow out of it'. It is a rather unfortunate term tbh.
For example, my son's label is global development delay - many people thus assume it is temporary... I don't even use it anymore, I just say learning disability as that is what it get changed to once children are bigger.

[Skelosia]

Asheth that is rather a bone of contention. It was picked up early on, at about 18 months, but we moved out the area. When I told the new doctors he had been referred for assessment, we went to see a new HV who also said there were issues. He was 3. Then we moved again, not totally out of the area, but to the other end of the city. As we were under the same PCT I didn't bring it up again until he started school and we still hadn't heard anything about an assessment. Then his teacher said that as his hearing was fine he was just naughty. It wasn't until a chance conversation was had, that I pursued it through the GP. And although I was a bit off with what I thought it was, I was right in that he was different. So, I guess you could say it was noticed when he was young. But last year we finally had all the right assessments, and it was a case of finding the cause. And it wasn't the SLT who diagnosed it as a disorder, but the paediatrician. She told me that the difference is that a delay would mean he would grow out of it, a disorder makes that unlikely.

kalpamum He sits facing the teacher, and has been given strategies by his SLT to ask for things to be repeated. He has a TA that he sees once a week and I think the classroom TA spends a lot of time with him to get him started. He has an IEP which focusses on his SAL targets, and his teacher has been fab in bringing him to his potential. It is a lot to do with understanding him. When we had behaviour problems the teacher brought in a behaviour book. TBH I don't think much is done in the classroom setting other than encouraging him to ask for help when he doesn't understand an instruction. I think they also reinforce instructions with pictures - very useful for any memory problem!

zzzzz It is not the issue of him being disordered, but the fact that my friend is so flippant about it. I have been told that he probably won't just 'grow out of it' so I don't need people around me treating it as if it is nothing! I don't want my hopes built, no matter how well intended. And considering his comprehension is that of a 4/5 year old, it isn't as if he is a couple of months behind. It is a significant issue in our lives, regardless of how well we deal with it on a day-to-day basis. Many with SN children will agree that it is hard going, and just because they have SN doesn't mean we are fabulously perfect parents. I have off days, more so now I'm pregnant, where I just can't deal with the repetition. And it is. Every day, when in his presence I have to be so alert to how we are both behaving. I am worn out every day regardless. I have looked after 'normal' children in the past, and although I know they are different when they are someone elses, but I have been so shocked at how easy they were! I ask if they want a drink, I get an answer! My friends 2 year old responds better than my 7 year old! Yes, he does sound like an ASD child, but his paediatrician assured me he isn't. The support he has right now seems to be doing the trick, and if it isn't a problem, then it isn't a problem and I won't pester for it. I am just cross that people that are supposed to support me just ignore the fact that it is more than a delay. At least with a delay, you know they will grow out of it!

And I would love for someone to tell an ASD parent not to worry, their child will grow out of it, because, after all, that too is a disorder. I don't believe they ever do. They just need a different set of skills to function in society.

[Skelosia]

No, he is definitely not static. He had improved a little, and at home w are coping. It us hard with the schoolas I obviously don't know what happens in the class room, but have seen improvement in last year where the teacher was adamant it was me, not ds who had the problem. A for my friend, i'm probably not going to have much to do with her from now on anyway, not just because of her flippancy on this matter but so many other things too. Yes,I agree, ds does display autistic traits, but pretty sure it isn't that! I do how the new arrival will help. He has been wanting a sibling for so long! Some one else one mentioned Ed psych. Maybe I'll look into that. I have been in touch with I can, and think they are fabulous! Definitely makes this journey less lonely.

[ThreeBeeOneGee]

Hi Skelosia, I think it might have been me that recommended this section on your other thread.

I struggle with this too, in that DS2 (Asperger's, ADHD) is not going to 'catch up' when it comes to social communication. He is making brilliant progress, but the gap between him and his peers continues to widen. I can see that his difficulties would seem like a delay, but it's a lifelong condition, and no amount of time is going to make his brain into a neurotypical brain.

[CouthySaysEatChoccyEggs]

Ah, the 'Global Development Delay' that in my DD's case has suddenly changed at 15yo to 'Moderate Learning Difficulties'.

Her development wasn't done in the same 'order' as an NT DC's just slower, rather her development has been rather unusual - crawling before she could roll over, for example. Able to cook a full meal from scratch before she could tie her own shoelaces. Able to shave her armpits before she was dry at night...

No, in my DD's case, it's not something she has 'grown out of', more that one set of issues gets replaced by another.

OK, she can talk now, perfectly well, albeit with a few mispronunciations, but that doesn't mean the people she speaks to at school actually socialise with her outside of school, unless they can't find anyone else to socialise with.

I've lost many people that I thought were my friends over the years - but after 15 years of it, with 3/4 DC's with dxd difficulties, I have come to realise that they aren't the right friends for me!

[Skelosia]

There is no valid reason for anyone to think it is our parenting either. We aren't overly strict, but not lenient either. One of DS's problems is listening and attention. We ruled out ADD, and we now understand that it is overloading of auditory information. He cannot cope where there is a lot of noise. And it was only the one teacher, who refused to support us, that had problems. He fell behind drastically in her class, but thankfully his Y3 teacher has brought him up to speed, and pushed him a bit harder.

In fact, I think he spent most of Y2 bored! He was sat with children of a lower capability than him, simply because they wouldn't support him. They assumed he was naughty and didn't listen. But in actual fact, with someone sitting there after the class instruction has been given, and making sure he knows what he is doing, and he is as capable as anyone else. He comes home now happy with school, because his brain is being challenged and he is learning. Since he has been challenged and pushed his behaviour has improved greatly. Coincidence?

It is the same at home. I have to keep an eye on him, and know when he is getting bored, before encouraging something new, or removing him from a situation for a break etc. He does not control his behaviour. I think this is partly because he does not know how to express his feelings (such as 'I want something new' or 'I find this too easy').

I don't see him as anything except my DS. It is how he has always been. Looking back, I can see where the communication difficulties started. I did everything the 'experts' suggested from the moment he could babble. He is 7 now and still does not understand the meaning of pointing. He will not follow your finger to the exact spot, but he does now look in the general area. He told me he loved me for the first time at 6. He would never wave as a toddler, despite being encouraged to. Before the dx, it broke my heart. All the other children roughly his age were waving, saying bye bye, telling their parents they loved them. I was lucky to get any response from him of any sort. But now, it all makes sense.

I also have to remember, I am extremely new on this journey, despite having known for about a year now. I am still learning about it, trying to figure out how it affects my son and how best to help him. The worst bit of it? Finding out how it affects my son is being learnt through books and research, and asking him if a certain scenario is true for him, because he cannot express it to me! I get fewer despairing looks in public now though, because I have been given better strategies of dealing with him in public.

[beautifulgirls]

Hi Skelosia

Are you yourself comfortable with the paeds view that he does not have ASD? My daughter has both APD and ASD, and many of the difficulties you mention she has. I may of course be entirely wrong, but things like not getting finger pointing and not understanding phrases such as "pull your socks up" sound more like ASD related issues then APD. Traits of ASD are of course a possibility without ticking every box needed for a diagnosis. I guess what I am saying is trust your instinct here if you are not truly comfortable with the advice you have had.

Sorry to hear about your friends. Some people get it with help to understand, others just simply don't believe you and will not listen to reason. The media has a lot to answer to as well in all of this with sweeping statements about naughty children being over diagnosed etc. If a friend is a good friend you will find they will learn how to understand, otherwise sadly time to move on. There are plenty of good people out there too.

[Skelosia]

I can't really say how I feel about the Paed's view. She did say he displayed ASD and ADD tendencies, just not enough to justify further investigation.

I have learned through all this that I know him best though. It took me 4 attempts to get the GP to take me seriously for referral. In the end I had to take loads of paperwork to prove my point, that it was a bit more than normal childhood behaviour!

We do wonder if he has SPD though. We despair with him at times. He will sit tightly wrapped in a blanket when the temperature is boiling, and we think that is because he likes the feel of it being wrapped around him. There are only a few foods he will eat, and he can tell the difference if you buy a different brand. We think a lot is to do with texture as well as taste. Then there is the excessive movement and spinning around. He goes crazy, literally bouncing off walls. There are things that do make us question whether he does just have a communication disorder, but at the moment, we are just waiting to see if he grows out of it, if it causes a problem, how serious it might get. Not wanting to create a problem if there isn't one, and feel that he has been through enough the past twelve months. Obviously a lot of life changes happening with the new arrival, moving house in the next few years, and September 2014 he will be going up to the Middle School. He has calmed down a lot since the dx. Time will tell if it is more though. His self esteem was probably crushed before. I remember I would go crazy at him because he 'wasn't listening', and I saw him crumble behind those gorgeous brown eyes. He genuinely had no idea why I was getting so cross, what he had done wrong. He had that from me for years. Now, his self esteem is being built back up, so maybe other issues will fade.

As for my friend, I was warned about her from another friend. But I am not one to listen to idle gossip. But in this instance, they were right. Everything I have heard has turned out to be true. And I totally agree about the media thing. My mum had a similar view. I was a statistic, someone trying to blame bad parenting on something else. But there isn't anyone with a bad word to say about DS, as he is a loving, caring and thoughtful boy. I was ineffective in parenting pre-dx, but never was it my fault. In fact, I even asked his SLT what it was I could have done differently. I was told that it is just the way it is sometimes. Just got to move on, get on with it, try and ignore the skeptics among us

[Hyperhelpmum]

Really feel for you. Just wanted to clarify, paediatricians and SLTs use 'delay' to describe a child with normally developing skills that are behind for their age. Some may catch up and reach age appropriate levels, done may not ie if a child has limited language but language is being acquired in the typical pattern or if child has poor social skills for their age, more like social skills of a younger child, they are delayed. Of a child is developing in a non typical way e.g language is acquired in an unusual way such as using made up words or getting words in the wrong order e.g instead of I want apple, apple I want for instance or if social skills are not typical eg no eye contact or lack of joint attention (interest in a shared object/ moment eg child looks at dog then at mum and smiles then back at dog to say look, I like that dog, do you see me liking it?! Do you like it?!) that would be disordered. The child's development may be behind for their age but it is also not typical of normal development. Neither things are necessarily things children grow out of its just delays are slightly more predictable as you know where the child will go next. Disorder means the child will need help specific to them. A dx of either is heart breaking and not to be trivialised or compared. I think people have NO experience so say stupid things like they will be five or grow out of it. Try not to be hurt. It is lack of knowledge rather than lack of sympathy I think. Hope this helps a bit. I'm a Paed SLT with a 5 yr old DS with potential ADD but I still worry there is more to it-he doesn't answer me, is on his ow topic alot and struggles to follow instructions. Even those of us I the 'job' don't have all the answers and feel like we are blindfolded with our arms tied behind our backs with these little people who are different but not clearly why or how. It's exhausting.

[Skelosia]

Thank you Hyperhelpmum for clarifying the terminology used!

Next time she says that he will grow out of it, I will as her how she knows that. She has never really known what it is that is going on, because she never asked. I would tell her, but she just seems to go on that he will grow out of it.

Yes, I can see how a delay would be predictable. And how it doesn't necessarily mean they will grow out of it. If I did have a choice, I would choose the delay though!

I think that some of DS's problems are my fault. But I now know that the communication thing isn't. So relieved to be in good company though. It doesn't feel so lonely now.

[Hyperhelpmum]

It is not your fault. In my msc they told us a child could be locked in a cupboard and only exposed to language a few hours a day and they would learn to communicate. Human beings are sociable and driven to communicate if and when they can. It's no more your fault than it would be if he was not a fast runner because he was born with short legs. He was born that way. A mic of generations of genes, not even yours and his dads alone. It's no ones fault. He is lucky to be born to patents who want the best. He could be the child of someone ill equipped to cope or care.

[Hyperhelpmum]

Ps delay is used in the place of the very un pc phrase retarded. You would not wish that on your son. They are both disabilities. Try to forget terminology and labels. I don't think they change who the child is or what they need from us. Just my opinion.

[Hyperhelpmum]

Very true zzzz. They would show ongoing problems of course. It's not a real scenario just an indication of how normally developing children are hungry to communicate. Obviously any child subjected to such neglect would suffer long term issues. And also true that people can have normal IQ and no verbal communication. That's why I don't think labels are always helpful. Imagine if Stephen Hawkins had been born in another time. You can't always predict a child's outcome from a label given by medical professionals in early childhood. You would be shocked how recently that awful term I won't repeat was used. In our lifetimes (if you were born before end of 70's)

[CouthySaysEatChoccyEggs]

Hyperhelpmum - that has explained PERFECTLY to me why I always disagreed that my DS2 had a speech DELAY. Because he spoke like bloody Yoda for years. It wasn't JUST that he didn't say his first word until he was over 3 and a half, but the way he made his sentences - I is hungry, I is, things like that.

Nobody would listen to me. Even now, he says things in such a way that I know what he means, but the sentence isn't quite constructed the way it should be.

That makes it far clearer. DD was the same too.

So I would hazard a guess that DS3 will be too, when he gets past using single words.

Thing is, with 3 DC's with disordered speech, it would be easy to say that it is my fault. But if that's the case, why has DS1 never had that issue? Why was he able to hold a full, almost adult conversation with preschool staff at just 2.5yo about the definition of omnivores, herbivores and carnivores?!

I KNOW it's not me - and all who have come into contact with DS1 over the years know that too.

But disordered rather than delayed explains DD and DS2's speech far better.

[Hyperhelpmum]

Yes zzzz i guess that word is wholly unhelpful as many children with difficulties understanding and using language have normal IQ and normal development in all other areas. I still think in the past any delay was described with that word, even though we now understand it is not an accurate description of the whole child. Glad it helped Couthy. The sentences you gave weren't actually disordered as most if not all children use 'i' is or 'me' is. Is it your children's speech as in the sounds they produce or way they produce a word or their language the words they are using? I only ask as we do see lots of families where more than one child struggles with their speech sound production. It's not as common but we do see families with language difficulties too. Again, not your fault at all as you see from your first child.