“Pugh, Pugh, Barney McGrew, Cuthbert, Dibble, Grubb.” The importance of play!

Whilst driving along in the car on the way back from an appointment the other week, I was listening as ever to radio 4. The obituary show “The Last Word” came on and they were talking about the death of Gordon Murray, the creator of Camberwick Green and Trumpton (children’s television shows in the 1970s). It brought back memories. I used to love those shows. So, in a fit of nostalgia I went on Youtube and looked it up to see if I could find any old editions to watch. Well, what a funny treat!!!!

Aside from the happy memories that came flooding back, several things struck me. Firstly, how slow paced the programmes were in comparison to today’s fast, frantic world. It seemed to me that this taught children to wait. Secondly, I was struck by how lovely the language was. It is full of beautiful vocabulary and rhyming! Such an enriching experience for kids! Mind you, I did laugh out loud when the episode I watched talked about how “Windy Miller likes cider” and tells children that “cider is good”. I can’t imagine that being in a children’s programme today, can you?

I’m sure that every generation looks back with nostalgia and thinks life was much simpler, but I really do think that for my generation of children we preoccupied ourselves more simply. You couldn’t access tv cartoons almost all day long, you couldn’t play games and watch things on phones and tablets, in the car, in the supermarket, in bed and at the table. We spent our time playing games with real people and real toys and not just that, but also created games out of abstract objects. This enabled us to use our imaginations and be creative. We developed so many skills through this.

So where am I going with all this? Well, lots of parents ask me what they can do to help their little ones with communication difficulties? I’ve found myself saying “play with them” a lot lately. Play helps children develop in so many ways. It develops language skills, helps them with vocabulary, but more than that it helps develop their symbolic understanding, their attention and listening skills, memory, abstract thinking, social skills and imaginations. Play is important for the development of their brains. Learning to play well, both by themselves and with others, sets children up to be contented and sociable. It is through play that children engage with and make sense of the world around them.

It’s good for parents too. It will help you bond with your child and encourage them to communicate with you. Spending time when you focus completely on your child will tell them their value to you. It can bring you closer together.

Play enables children to explore and to imitate. This is where it is crucial to their communication development. They’re listening to and learning language when you play with them.

Play doesn’t have to be complicated. You can involve them in drying the dishes and make a game out of it. Get down on the floor and make some roads out of masking tape. Push cars along them. Pretend to stop at some imaginary traffic lights. Grab a saucepan and some dry pasta and pretend to make a meal. Feed it to a doll, or a toy doggie. Pretend to wash a toy car with a water spray. Push a ball backwards and forwards between you. Sing songs and nursery rhymes to them. Encourage them to join in. Play clapping games, swing them in a blanket, blow bubbles, count pennies, build towers and knock them down. When you’re doing this your child will pick up lots of new words and lots of skills. You will find yourself commenting on what you’re both doing and saying things like “look the blue car is wet”, or “oh oh, it’s fallen down”. Believe it or not simple comments like these are exposing them to verbs, adjectives, nouns and concepts.

Give it a go, I promise you it will reap rewards.

October 26, 2017

Phonological processes

What is a phonological process? Speech sounds are complex to say and sometimes little ones can have difficulty producing them accurately until they are more developed. They tend to replace these “tricky” sounds with ones that are easier for them to say. We call these substitutions phonological processes. Normally children will grow out of these by a certain age. Below is a guide for you on the most common phonological processes:

Substitution/process	Description	Example	Age when typical child stops process
Reduplication	When a complete (or incomplete) syllable is repeated	e.g. baba for bottle	Between 2 – 3 yrs
Affrication	When a non-affricate sound is replaced with an affricate(ch or j)	Joor for door	3 yrs
Final consonant deletion	When the last consonant in the word is left off	Child says “roe” instead of “road”	3 yrs
Fronting	When a sound normally produced at the back of the mouth is produced further forward in the mouth	Tup instead of cup	3 ½ yrs
Backing	When a sound normally produced at the front of the mouth is produced further back	Child says “gog” instead of “dog”	This is very unusual and when we observe this process it is often an indicator of a severe phonological difficulty
Stopping	When a fricative sound like f or s, or an affricate sound like ch or j is replaced with a plosive sound such as p or b	Stopping /f/ fish → tish Stopping /s/ soap → dope Stopping /v/ very→ berry Stopping /z/ zoo → doo Stopping ‘sh’ shop = dop Stopping ‘j’ jump → dump Stopping ‘ch’ chair → tare Stopping voiceless ‘th’ thing → ting Stopping voiced ‘th’ them → dem	3 yrs 3 yrs 3 yrs 6 months 3 yrs 6 months 4 yrs 6 months 4 yrs 6 months 4 yrs 6 months 5 yrs 5 yrs
Weak syllable deletion	When the weak syllable in a word is deleted	Banana becomes nana	4 yrs
Initial consonant deletion	When the initial sound is left off of the word	“bunny” → “unny”	This is very unusual and when we observe this process it is often an indicator of a severe phonological delay
Cluster reduction	when a consonant in a cluster of sounds is left out	“plane” → “pane”	4 yrs (without s) 5 yrs (in s clusters)
Gliding	When an r sound becomes a w or y sound and an l sound becomes a w or y sound	“robot” → “wobot” “yellow” →”lellow”	6 yrs

October 6, 2017

Oro-facial assessments

Cutting corners is a really bad thing

This has been on my mind for a while now so I thought I would say something about it. I came across a social media group for speech and language therapists and someone had posted a question about teaching a child to say the s sound. The child in question wasn’t able to make the sound without air escaping from her nose. So, the therapist wanted advice because what she was doing wasn’t working. I read the responses with interest. It is always good to see what other therapists do and the approach they take. A few therapists gave suggestions about different techniques to use, to see if it helped. Fortunately, many more all said the same thing (including me). The majority wanted to know if the child had had an oro-facial assessment and strongly advised referring the child to a specialist cleft, lip and palate clinic for further assessment.

The reason most of us recommended this is because speech difficulties can be caused by a variety of factors. Sometimes there is something different about the structure of the vocal tract. For example, the child has a tongue tie, has a cleft palate, or their velum isn’t working properly (that little piece that dangles down at the back of the throat). They may also have a condition such as dyspraxia or weak muscles which will impact on their speech. Sometimes, they just haven’t learned to say the sound properly, or learned to say it the wrong way when they were much younger and kept on doing it that way. The treatment methods for these difficulties will vary depending on its cause.

My point is that if you don’t know the cause then you can’t treat it properly. In fact you could make things worse by putting the child through ineffective, unnecessary therapy. Too often therapists don’t do an oro-facial assessment. An oro-facial assessment s when the therapist will look at a child’s face (for things like facial symmetry), look into their mouths, get them to say “ah” and then ask them to perform a series of tasks involving moving their tongue up and down, puffing out their cheeks etc.

I believe this to be a vital part of assessment and I always do one when assessing a child who has been referred for speech difficulties, but I am dismayed to find therapists that don’t and it causes me concern. I have seen patients who have been in treatment for a long time and never had one. I have performed this assessment with patients and discovered conditions such as a weak velum, that ultimately needed surgery.

I did some locum work for a neighbouring health trust and on my first day when being shown around my new clinic room, I asked where the alcohol gel and gloves were kept? The person giving me the guided tour ( a therapist) asked me why I needed them? I responded “for oro-facial assessments” and was told “oh we don’t really do them”!!!!! I kept my poker face on, but was so, so shocked. It is ingrained into every therapist at university that you should always perform one as part of your assessment. However, I have noticed increasingly that this is left out. Corners are cut and it is not good folks!!!

So, to every parent I say “please ask the clinician to do one if you are seen for speech difficulties”. To every therapist colleague of mine, I respectfully say “please, please don’t cut corners and leave this out, as you cannot treat someone effectively without a full understanding of what is occurring and you cannot gain a full understanding without performing an oro-facial assessment.

Thank you x

September 19, 2017

Transgender children

We had friends round for dinner this evening and towards the end of the meal as we were sat around the table the conversation turned to news items we’ve seen this week (as it so often does). We started talking about the news item this week about the Christian couple that removed their child from a primary school because the school were supporting a transgender child by “allowing” them to wear a skirt! Of course it is a much deeper argument than just about the clothing the child was wearing. The parents at the centre of the reporting stated that “our concerns were raised when our son came back home from school saying he was confused as to why and how a boy was now a girl. We believe it is wrong to encourage very young children to embrace transgenderism, boys are boys and girls are girls”.

Naturally, the media have been all over this event and have invited the parents to talk about their decision on chat shows and radio shows. The conversation round the table tonight saw a frank and full discussion about this with varying opinions being offered.

I’ve been thinking about it ever since (it’s now the wee hours of the night) and decided to write a blog article about it. Now, I hear you saying “what has speech and language therapy got to do with being transgender”?

Well firstly, people who are transgender are human beings and therapists work with human beings. Speech and language therapists do many things, but a large part of our work (regardless of the client type) is listening and empathising with people. It’s a caring profession. We share journeys with our clients and often come across situations where deep emotion is expressed. People trust you and open up to you in an intimate way and it is a privilege when someone does that. I’d even go so far as to say that it is sacred. Whilst at university we study modules in sociology and psychology to prepare us for this, as it is a vital element of our work. I believe this makes us sensitive to areas that others are not. A lot of clients will express some form of grief or another during sessions, whether it be a parent who is grieving over their child’s delayed development or an adult who has experienced a life changing brain injury.

Secondly, you may not know this, but speech and language therapists work with people who are transgender, mainly to help feminise the voice after someone has had male to female gender alignment surgery. So, we learn about being transgender at university. When I sat in a lecture theatre and was taught about what it means to be transgender and about the process of gender realignment it was revelation (please note that I use the term realignment rather than reassignment purposely, because reassignment suggests that gender is a choice, rather than organic).

At the time I had a family member going through the process and I was so pleased to develop my understanding of it.

It can be hard to ask someone who is going through the process, about it. I’m British and we Brits don’t like to ask personal questions for fear of offending someone. However, conversely some parts of society seem happy to make assumptions. So, when I heard the news article this week and saw the sorts of comments that were being posted on social media it really got me thinking. Some of the comments that were made were along the lines of:

they’re (the children) too young to know
the parents have planted the idea in their minds
children have fads and how do the parents know they won’t change their minds in a few years
the parents shouldn’t be indulging this
the parents are ultimately making the choice for the child
it’s too confusing for other children

I want therefore to take this opportunity to address these arguments in some small way through the little understanding I have. I’m going to attempt to do this in two ways, by presenting information about the subject (including research) and also offering you some personal insights I have, but before I do so I want to reiterate that this is a highly, highly, complex issue and that even specialists in the field have slightly conflicting opinions about it all.

Okay, so here we go for the factual stuff:

People refer to the term trans – what does this mean? Trans is an umbrella term for various people who feel that the sex that they were assigned at birth does not match or sit easily with their sense of self. The world is generally divided into two categories – men and women. Sometimes it is thought that trans is complicated because a trans person doesn’t fit neatly into these two categories. Indeed the concept of ‘trans’ raises questions about what it even means to be a ‘man’ or a ‘woman’. The trans spectrum encompasses transsexual and transgender people, crossdressers, and anyone who challenges gender norms. It may be that a trans person feels more the “opposite” sex and so chooses to use medical intervention in order to align their body with their mind or their outside appearance with their internal feelings. Crossdressers may dress to express the more masculine or feminine side of themselves, or simply because those clothes feel more comfortable.

So, what does the term transgender mean, is it the same as trans – It is someone who self identifies their gender identity as that which does not match the sex which they were assigned at birth.

What sexual orientation do transgender people have – people sometimes confuse gender identity with sexual orientation, and as a result, think that trans is another category of sexual orientation or sexuality. Trans, however, describes how you feel about your gender identity only. Trans people can be straight, gay, bisexual, or something else entirely – just like everyone else!

What is gender dysphoria – children are socially defined as male or female based on genital appearance at birth. The expression of characteristics that are not associated within society with one’s assigned sex at birth, is a common and culturally diverse human phenomenon, that should not be judged as inherently pathological or negative. Children and adolescents may not always feel that they fit with their assigned sex. The way they look on the outside may not fit with how they feel inside. The way they are expected to behave may be quite different from the way they actually want to behave. This overwhelming sense of feeling like the opposite gender causes strong discomfort and is called gender dysphoria (‘dys’ – meaning difficult or painful and ‘phoria’ meaning condition of feeling/mental state). (World Professional Association for Transgender Health, 2011; Royal College of Psychiatrists, 2013).

What is gender variance – by the age of 3 years, most children express an interest in or preference toward activities and behaviours typically associated to their specific gender. We call these behaviours “gender-typical” because the members of one of the sexes favour them. For example, boys enjoy rough-and-tumble play and identify with male heroes, while girls enjoy such activities as playing with dolls and pretending to be a mummy. By age 5-6 years, children have a strong sense of the gender-appropriate behaviour that is typical for their social group. However, some children develop in a different way. Some children have interests more typical of the other sex and sometimes want to look and act like the other sex. For example, a 7-year-old boy plays with Barbie™ dolls and pretends to have long hair and be a princess. A 6-year-old girl is only interested in playing outside with the boys, refuses to wear anything except jeans and t-shirts, and talks about being a boy. We call these gender-variant behaviours and interests.

What is thought to cause gender dysphoria – although science has yet to pinpoint the causes, we know that gender-variant traits are not typically caused by parenting style or by childhood events, such as divorce, sexual abuse, or other traumatic experiences. Children do not choose to have gender- variant interests any more than other children choose gendertypical interests. Both types of interests represent what comes naturally to each child. The transgender condition is understood increasingly to have its origins before birth. Research studies indicate that the baby’s brain development does not always coincide with the sex differentiation of the rest of its body. Divergent development predisposes the baby to a future mismatch between their gender identity and their body (Gender Identity Research and Education Society, 2015). There is no evidence that social environment after birth has an effect on gender identity (Swaab & Garcia-Falgueras, 2009).

Do children grow out of being transgender – some children with gender dysphoria will not grow up to be transgender adolescents or adults, however, it is likely that the more intense gender dysphoria is in childhood the more likely it is to persist into adulthood.

What are the treatments for gender dypshoria – Treatment for gender dysphoria aims to help people with the condition live the way they want to, in their preferred gender identity. What this means will vary from person to person, and is different for children, young people and adults. Generally though for children if your child is under 18 and thought to have gender dysphoria, they’ll usually be referred to a specialist child and adolescent gender identity clinic (GIC). Staff at these clinics can carry out a detailed assessment of your child, to help them determine what support they need. Depending on the results of this assessment, the options for children and young people with suspected gender dysphoria can include:

family therapy
individual child psychotherapy
parental support or counselling
group work for young people and their parents
regular reviews to monitor gender identity development
hormone therapy

Most treatments offered at this stage are psychological, rather than medical or surgical.

Teenagers who are 17 years of age or older may be seen in an adult gender clinic. vThey are entitled to consent to their own treatment and follow the standard adult protocols.

By this age, doctors can be much more confident in making a diagnosis of gender dysphoria and, if desired, steps can be taken towards more permanent hormone or surgical treatments to alter your child’s body further, to fit with their gender identity.

Adults with gender dysphoria should be referred to a specialist adult GIC. As with specialist children and young people GICs, these clinics can offer on-going assessments, treatments, support and advice, including:

mental health support, such as counselling
cross-sex hormone treatment
speech and language therapy – to help alter your voice, to sound more typical of your gender identity
hair removal treatments, particularly facial hair
peer support groups, to meet other people with gender dysphoria
relatives’ support groups, for your family

Once social gender role transition has been completed and the care team feels a person is ready, then they are eligible for gender reassignment surgery which is a surgical procedure where a transgender person can alter their existing characteristics to resemble that of their identified gender .

So, now to my own thoughts on the matter:

Argument 1 “The parents have planted the idea into the child’s mind” – my first thoughts are that at 5 years of age I knew that I was a girl. At every age I knew it for sure and did not have any doubts about my identity. Did you know what gender you were as a child? How did you know? Was it because someone told you, or did you intrinsically know? If someone had come along and told me I was a boy I would have known it wasn’t true, because I knew I was a girl. What drives gender-typical or gender-variant traits cannot be changed through the influence of parents, teachers, coaches or therapists. Although a child may alter his or her behaviour in response to parental pressure or social pressure, such changes may be skin deep and may not reflect how the child truly feels.

The following information from http://www.mermaidsuk.org.uk states that “at the age of 5 or 6years, children begin to be influenced by social pressure to conform and may adjust their behaviour in public to blend in. This does not necessarily mean that the child’s “core traits have changed”.

Argument 2 As for it being a fad – well it might be? It’s an area with few studies, however, some of the evidence emerging is that some of children with gender dysphoria will not grow up to be transgender adolescents or adults. As with all medicine there are also opposing studies that suggest that the more intense gender dysphoria is in childhood the more likely it is to persist into adulthood. This poses a challenge then because how can you predict which children will continue to have gender dysphoria? Well you can’t and I would go so far as to say that unless we support these children to explore their gender and feel confident in it then they won’t be able to find out and we as a society run the risk of witnessing people suffer greatly and also of losing our precious citizens. Hormone blockers that delay the onset of puberty offer a temporary respite in which a child can explore their gender and become more confident.

I believe in listening to people, so I worry when huge swathes of the population dismiss the perceptions and perspectives of others. I have observed that when people don’t necessarily understand something well, they have a tendency to dismiss it. There is a fabulous website supporting transgender people called mermaidsuk.org and I found this powerful and insightful quote on it “the world is indeed rather a gender rigid place and for the most part people do not know very much about trans. Where there is ignorance there is fear and of course fear creates hostility”.

It’s huge thing to begin living as the opposite gender and not generally something that one would choose to do unless there were very real issues about gender dysphoria. I don’t think that any parent or child would pursue such a route unless there were very real issues and without much careful, consideration. I have not experienced living with gender dysphoria so who am I to say that “boys are boys and girls are girls?” The one thing that I have learned through my own experiences of mothering children with ASD is that you cannot judge another unless you take a walk in their shoes. It’s easy to sit on the side-lines and have an opinion.

My understanding is that many children/adolescents/adults who are transgender suffer a great psychological burden as a result of their unease at being in the wrong body. They also suffer terribly from a society that often stigmatises and discriminates against them. Research from the Equality and Human Rights Commission (2015) found that 91% of trans boys and 66% of trans girls experience harassment or bullying in school, often leading to depression, isolation and a desire to leave education as early as possible.

The suicide rate within this population is somewhere between 30 – 50 %. That is a staggering statistic! So, imagine a school year group and then imagine anywhere between a third to a half of it committing suicide. Such a phenomenon would cause outcry if it were to happen in real life, but it is happening in the transgender community right now. Many parents who support their children do so because their child has shared suicidal thoughts with them. It’s hard to stand by and see your child suffer and I applaud the parents of transgender children who go to great lengths to help them. They listen and they show them respect by really hearing what the child is saying. Just such a parent said “we got lots of opposition from our family; we were told what if they change their mind, but we knew that we had to listen to our child and that nothing else mattered.”

Now to the final argument against supporting transgender children “it’s too confusing for other children”. I think most children are quite resilient and can understand a lot when it is presented to them in the right way. I can see how it could be confusing, but then I think it presents us all with a perfect opportunity to think about gender and identity, but also to think about respect, kindness and understanding. It’s a great opportunity to teach your children about supporting others and not just accepting but respecting difference. I really like this guidance from East Sussex county council on transgender issues, (increasingly seen as the leading reference on the subject) which states that “transgender pupils should not be seen as a problem, but rather, as an opportunity to enrich the school community and to challenge gender stereotypes and norms on a wider scale.”

I guess at the end of the day it comes down to how we see our fellow human beings? Do we look for confusion and differences or do we look for the humanity we have in common and try and see how we can expand our own understanding?

September 12, 2017

How do you know if your child has speech and language difficulties?

We currently have family visiting from overseas (an in law) so for the last few weeks I have been acting as a tour guide. We’ve been to Cambridge, Oxford, Stonehenge, Bath, Eton, Windsor, Dunkirk, Bruges and Brighton. As we’ve travelled they have commented over and over again how beautiful everything looks and how quaint all of the old buildings are. At first I thought they were being polite, but then I realised that they were sincere! It made me ponder and I’ve realised that actually Great Britain is really beautiful. We live in a lush, green country and there are stacks of gorgeous historic buildings around. I’ve always known that they are there; it’s just that seeing them again through fresh eyes made me think about how much I have taken them for granted. When you are around something every day you stop seeing it, or you don’t see it for what it is.

The school term has just started and many children are just starting school. One of my colleagues over at Bridge Therapy (Stourbridge) recently posted an article on her facebook page about Head teachers reporting that the number of 4 year olds starting school without being about to speak properly is on the increase. The original article was in The Telegraph newspaper (http://www.telegraph.co.uk/education/2017/09/06/cases-rour-year-olds-arriving-school-unable-speak-properly-rise/) and talks about how because of the pressures of modern family life many parents no longer have time to talk to their children, but instead leave them to play with ipads and other forms of technology. They cite this as one of the factors that may be contributing to why there is an apparent increase in children nesnot being able to communicate properly. I’m not going to bash parents here, most of the time they do the best they can with the tools and knowledge they have available to them at the time.

However, another potential reason they cite did resonate with me and that is “that there is a failure to identify and support additional needs early enough” was the most common reason given. It’s a tough job being a parent!!!! Most parents have to keep lots of balls balanced up in the air all at once, but I wonder if part of the problem is that we are so used to being with our children that we simply don’t notice that they are having difficulties (a bit like not seeing the green hills and historic buildings). They are just our children and we are used to what they do and how they do it! Now don’t get me wrong I’m not saying that parents are complacent or lazy, but how do you know what your child is supposed to do and at what age?

How do you know if their skills are delayed? Speech and language therapists are highly skilled and have specialist knowledge. Most parents do not have access to this knowledge.

So, how do you know whether you should be concerned about your child?

The following is a guide to the skills that they should have acquired by certain ages.

By 18 months you should see your child doing:

Enjoy games like peek-a-boo and pat-a-cake and toys that make a noise.
Start to understand a few simple words, like ‘drink’, ‘shoe’ and ‘car’. Also simple instructions like ‘kiss mummy’, ‘kick ball’ and ‘give me’.
Point to things when asked, like familiar people and objects such as ‘book’ and ‘car’.
Use up to 20 simple words, such as ‘cup’, ‘daddy’ and ‘dog’. These words may not always be easily recognised by unfamiliar adults.
Gesture or point, often with words or sounds to show what they want.
Copy lots of things that adults say and gestures that they make.
Start to enjoy simple pretend play, for example pretending to talk on the phone.

By 24 months they should be:

Concentrate on activities for longer, like playing with a particular toy.
Sit and listen to simple stories with pictures.
Understand between 200 and 500 words.
Understand more simple questions and instructions. For example ‘where is your shoe?’ and ‘show me your nose’.
Copy sounds and words a lot.
Use 50 or more single words. These will also become more recognisable to others.
Start to put short sentences together with 2-3 words, such as ‘more juice’ or ‘bye nanny’.
Enjoy pretend play with their toys, such as feeding dolly.
Use a limited number of sounds in their words – often these are p, b, t, d, m and w. Children will also often miss the ends off words at this stage. They can usually be understood about half of the time.

By 3 years they should be doing:

Listen to and remember simple stories with pictures.
Understand longer instructions, such as ‘make teddy jump’ or ‘where’s mummy’s coat?’
Understand simple ‘who’, ‘what’ and ‘where’ questions.
Use up to 300 words.
Put 4 or 5 words together to make short sentences, such as ‘want more juice’ or ‘he took my ball’.
Ask lots of questions. They will want to find out the name of things and learn new words.
Use action words as well as nouns, such as ‘run’ and ‘fall’.
Start to use simple plurals by adding ‘s’, for example ‘shoes’ or ‘cars’.
Use a wider range of speech sounds. However, many children will shorten longer words, such as saying ‘nana’ instead of ‘banana’. They may also have difficulty where lots of sounds happen together in a word, e.g. they may say ‘pider’ instead of ‘spider.’
Often have problems saying more difficult sounds like sh, ch, th and r. However, people that know them can mostly understand them.
Now play more with other children and share things.
Sometimes sound as if they are stammering or stuttering. They are usually trying to share their ideas before their language skills are ready. This is perfectly normal, just show you are listening and give them plenty of time.

By 4 years you should expect:

Listen to longer stories and answer questions about a storybook they have just read.
Understand and often use colour, number and time related words, for example, ‘red’ car, ‘three’ fingers and ‘yesterday / tomorrow’.
Be able to answer questions about ‘why’ something has happened.
Use longer sentences and link sentences together.
Describe events that have already happened e.g. ‘we went park.’
Enjoy make-believe play.
Start to like simple jokes.
Ask many questions using words like ‘what’ ‘where’ and ‘why’.
Still make mistakes with tense such as say ‘runned’ for ‘ran’ and ‘swimmed’ for ‘swam’.
Have difficulties with a small number of sounds – for example r, w, l, f, th, sh, ch and dz.
Start to be able to plan games with others.

By 5 years they should be:

Understand spoken instructions without stopping what they are doing to look at the speaker.
Choose their own friends and play mates.
Take turns in much longer conversations.
Understand more complicated language such as ‘first’, ‘last’, ‘might’, ‘may be’, ‘above’ and ‘in between’.
Understand words that describe sequences such as “first we are going to the shop, next we will play in the park”.
Use sentences that are well formed. However, they may still have some difficulties with grammar. For example, saying ‘sheeps’ instead of ‘sheep’ or ‘goed’ instead of ‘went’.
Think more about the meanings of words, such as describing the meaning of simple words or asking what a new word means.
Use most sounds effectively. However, they may have some difficulties with more difficult words such as ‘scribble’ or ‘elephant’.

Since children are different the milestones listed above are a general guide. A skilled clinician will be able to ascertain whether there is cause for concern about a child’s development.

One of the most difficult aspects of being a speech and language therapist is that you sometimes have to break bad news to people. Often, when children are diagnosed with language difficulties a lot of parents will report that they didn’t know what to look out for.

Here are some things to look out for that may indicate your child is having difficulties with language understanding and use:

Does not use gestures (e.g., waving, pointing) (7–12 months)
Doesn’t understand what others say (7 months–2 years)
Says only a few words (12–18 months)
Doesn’t put words together to make sentences (1½–2 years)
Says fewer than 50 words (2 years)
Has trouble playing and talking with other children (2–3 years)
Has problems with early reading and writing skills—for example, may not show an interest in books or drawing (2½–3 years)
Has a limited vocabulary compared to children the same age
Substitutes general words like “stuff” and “things” for more precise words
Has trouble learning new vocabulary words
Leaves out key words when talking.
Uses certain phrases over and over again when talking
Doesn’t talk much, although he understands what other people say
Uses short, simple sentences or speaks in phrases
Uses a limited variety of sentence structures when speaking
Has little interest in social interactions
Goes off-topic or monopolizes conversations
Doesn’t change his language for different listeners or situations
Has trouble understanding things that are implied and not stated directly
Doesn’t understand how to properly greet people or gain attention
Doesn’t understand riddles and sarcasm

Now, a friend jokingly commented to me that this sounds like the average teenager. My reply “ha ha, teenagers will mostly be doing this through choice and not inability”. If your child has difficulties with understanding and using language you will see these signs well before they become teenagers.

June 29, 2017

Hello world!

July 2017

Parents ‘blamed’ for children with autism’s behaviour

The headline sounded familiar, so familiar in fact that it really captured my attention and I had to read it. A BBC article (see here: http://www.bbc.co.uk/news/uk-wales-40717652?SThisFB) describes the experiences of many parents, who how through a lack of understanding from professionals about autism and its effects, are then sent inappropriately on parenting courses. This resonated with me so much that I just had to “throw my penn’th worth” into the debate and write a blog article about it. When I read the article my first thoughts were “surely that isn’t still happening”?

The article (which is short) discusses an investigation into the experiences of parents and a new initiative in Wales that is designed to support families better. It reports that parents are often “blamed” for their autistic child’s “bad” behaviour and subsequently sent on courses to improve their parenting. As many of you will know I have 3 children diagnosed with autism spectrum disorders. Each one of them is unique and special in their own way. Each of them despite having similar diagnoses is different from each other. Their journeys were/are different. They were all diagnosed at different ages and had very different educational experiences, despite living in the family, same town, healthcare trust and education system. By far the hardest diagnosis was with our first child. It was apparent to us from the age of 7 months of age that he was “different”. He did not like to be hugged or touched and as soon as he was able to, would actively “wriggle” free from our arms in order to avoid being hugged. As he developed he did not play with toys in the way that they were designed. He would just throw them all over the room, or line them up into beautiful lines. We proudly looked on and thought that he was creatively making car parks. He had developed a lot of irrational anxieties about all sorts of things. He did not play with other children well and would mostly just whack them. He had poor eye contact, delayed language, disliked changes in routine and was very hyperactive. In fact, we had never heard of autism at that point and thought that he had ADHD. He was like a “whirling dervish” and was constantly busy. Keeping him safe was very challenging as he had an amazing capacity to defeat any regular child safety precautions and equipment. He was super talented at either climbing over or opening safety gates (from 1 year old). He would remove socket covers and merrily throw them over his shoulder, even though I struggled to remove the darn things when I needed to plug something in. He would move items of furniture like his highchair to use as a ladder to gain access to the things he found fascinating. He would do this as soon as your back was turned for a second. Unfortunately, he had a fascination/fixation with electrical knobs and caused a kitchen fire by the time he was two. I’m wincing as I confess this, because I’m worried that the people reading it will think “how was he left long enough to get to a cooker knob to cause a fire”? Believe me he did it in no time at all (whilst I was breastfeeding my younger baby). He could remove himself out of his car seat in minutes and his pushchair too. I sewed a series of rucksack type buckles onto his car seat in order to delay the amount of time he took to get himself free. We nicknamed him Houdini!! He would run away constantly if you let go of his hand for a second and keeping him safe was a full time job. Most days were very challenging. By the time he was 2 ½ I was seeking help. When I did, my health visitor said “oh I’m surprised you have left it so long, we’ve been worried for a while”. I’m not surprised they were worried. I would go to the health visitor’s clinic with him and my new baby, and my oldest son would run a little course between turning the taps on/off constantly, emptying the fridge of the vaccines, throwing them all over the floor and then emptying the steriliser unit of speculums. Once he had completed the course, he would begin the circuit all over again.

So, at the age of 2 ½ we began attending CAMHS. It took 3 further years to get him a diagnosis. During that time we attended CAMHS regularly (almost weekly) and had every aspect of our lives and parenting examined, queried and assessed. We were asked to implement strategies and techniques and did so with patience AND frustration. We were willing to do anything we could to support our child, but throughout the entire experience I always felt like a giant finger was being pointed at me. This finger came with the implied message of “you are a rubbish parent because you cannot control your own child” or, “you’re not doing it properly, you’re not trying hard enough”. At one point a professional actually said to the two of us that our child’s difficulties were as a result of the environment we were providing for him. When we queried this and responded “well, why is our other child okay if the environment is so bad”? The answer we were given was “well, it’s his emotional interpretation of the environment” to which my husband got very cross and very abrupt.

Now, don’t get me wrong I’m not saying that parents should not be sent on courses to improve their performance. In fact, it’s a big part of the therapeutic role to coach a parent, but when a parent is experiencing the level of difficulty that we were with ours, precious time is lost and wasted. The time we spent being “blamed” could have been spent more productively addressing his actual difficulties.

The BBC investigation/article quotes a solicitor, Julie Burton from Bangor. Julie rightly makes the point that parents of ASD children are often being told that they’re not adequately parenting the child. She comments “They’re told all they need to do is adopt particular strategies from parenting classes and all their problems will be solved, but it’s missing the point – you can be the world’s best parent, but if you’ve got a child presenting with really difficult behaviours, no amount of amazing parenting, or parenting courses is actually going to address the root cause.”

There are certainly some evidence based interventions and strategies that can make a difference to a person with ASD such as social stories, visual timetables, PECS etc., but at the end of the day the person will still have autism. The strategies that we were asked to implement and try (during our 3 year attendance at CAMHS) were all aimed at improving our parenting and not focused on helping us understand our child better. They were designed to fix us (under the assumption that we were broken), rather than help our child. As a result we missed out on crucial insights and opportunities to “get into his world” and help him cope and understand “the world” that he was living in a bit better. Picture this, your child has a temperature and you take them to the GP, only to have the GP focus on your physical presentation. Instead of physically examining your child the GP starts asking you a series of questions about your lifestyle and then gives you advice about how to dress better etc. Most of us would be outraged in this instance, yet that is what it can feel like when you are the parent of an ASD child. This is what often happens. Of course there are some good clinicians out there and some good CAMHS teams, but all too often they begin their investigations focusing on the parents and not necessarily the child. Sending the parent of an ASD child on a parenting course is akin to sending a parent whose child presents with gastrointestinal symptoms to a diet club. It’s not addressing the problem. The parenting strategies we were taught were based on the premise that consistent discipline and approaches would remedy our son’s behaviour.

There are several problems with this:

His behaviour wasn’t him being “naughty”. His behaviour was as a result of numerous factors such as not understanding the world around him, being frustrated because he couldn’t communicate, having sensory integration difficulties, becoming anxious at things like changes in his routine and ultimately being a square peg trying to fit into a round hole.
We weren’t poor parents who lacked skills. Okay, I admit we weren’t perfect…show me a perfect parent. No such thing exists. We all have strengths and weaknesses. We were doing our absolute best in very challenging circumstances. Looking back on it, I think we did a pretty good job given everything. Ironically, my son got a diagnosis when he went to school and the “professionals” began struggling with the same aspects of his behaviour that we had been for several years.
That made us feel that we hadn’t been listened to, or respected. The effect of that was that we did not work together collaboratively as a team for the best interests of our child. It’s hard to be an effective team when one party feels judged.
In the BBC article a mother of an ASD child talks about her child’s sensory processing and subsequent aversion to being washed or having his hair combed. She said “there are things he finds very difficult – like bathing, having his hair brushed and changing his clothes. So quite often his clothes are grubby, his hair is tangled, his hands are dirty, but he is healthy, he’s happy and we are trying to educate him”. But an unconventional appearance meant she had “a daily fear of being reported to social services. If you step out into your front garden someone can see you, and if you raise your voice in the house someone can hear you. You feel there are eyes everywhere and everything that happens they will interpret through their own filter, they won’t try to understand it from your point of view, they don’t necessarily know about the autism, so living in that sort of situation there’s a daily fear of that happening.” This can be a very real fear if you have already had to jumps through “parenting course hoops” and prove yourself.
It was a waste of time. We know from research that the earlier the intervention the better the outcome. We spent our son’s early years focusing on the wrong elements (whilst we went to parenting courses). Sadly we will never know the difference it could have made to him?

In the 1970’s many parents of children with ASD were overtly accused of causing their children childhood psychosis (the then used label for ASD) through “cold” parenting. In the 1990’s parents like me were made to jump through hoops for years being sent on parenting courses. It’s sad to think that in this day and age we still haven’t moved on much. In my opinion we’re getting it wrong. It’s time to rethink how we as professionals assess and treat these children. I’m going to start with me and do exactly that and reflect on my own practice.