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Parenting a child with invisible learning differences (Dyspraxia)

1
My gorgeous daughter is nine years old and to look at her you would not notice anything out of the ordinary. She was diagnosed with Dyspraxia (Developmental Coordination Disorder) aged 5, following an NHS Occupational Therapy assessment which placed her motor skills in the lowest possible category. Dyspraxia is primarily a disorder of planning and executing sequences of movement, yet despite the diagnostic focus on movement, it is also so much more than this. Medical circles use the term ‘developmental coordination disorder’ but the emphasis on motor
SelfishMother.com
2
skills ignores the wide ranging impact of Dyspraxia on many other areas.

Alongside motor issues, there may be challenges with ‘executive functioning’- planning, organisation, attention and memory. Speech production may also be affected, resulting in Verbal Dyspraxia for some children. In school, challenges with motor skills affect writing and many children with Dyspraxia also have dysgraphia (handwriting difficulties). The ‘dys’ family (dyspraxia, dysgraphia, dyslexia, dyscalculia) have a tendency to co-occur and are rarely found in isolation.

SelfishMother.com
3
In my daughter’s case, she has Dyspraxia, Dyslexia, Dysgraphia and is currently undergoing assessment for inattentive ADHD (formerly known as ADD). Dyspraxia does not affect intelligence, but challenges faced often make learning a tough journey. It is within a learning environment that these challenges become glaringly obvious.

There are quite a few ‘labels’ going on here, so I want to share a few thoughts about parenting, our journey and any wisdom gained, in the hope that it might help others on similar journeys feel less alone. One of the

SelfishMother.com
4
main challenges for me as a new mother, was knowing there was something ‘wrong’ early on, feeling isolated and constantly worried. I spent many baby group sessions wondering why my baby was so incredibly clingy and why she would not crawl off like the other children. I also wasn’t aware of many other children growling throughout ‘Baby Sensory’- although in retrospect it could be called ‘Sensory Overload’. I now know this must have been torture for a child with sensory issues. Parent fail moment!

Dropping her at nursery was traumatic for

SelfishMother.com
5
us both, and I felt as though she was perceived as ‘hard work’ and me as an overprotective mother. Despite being a January birth, we were told she was ‘school ready’ aged 4.5, and off she went to Primary school as the youngest in her class. As trainee parents, if only we knew then what we knew now- a double whammy of a very young child and one who had invisible (not yet diagnosed) learning differences!

To any parent out there who is in the ‘gap’ between ‘knowing there is something going on’ and diagnosis, my heart goes out to you. It

SelfishMother.com
6
is a lonely time and one which I spent afraid both of knowing and not knowing. I felt that if milestones were reached, health visitors were happy. I recall one instance when I shared some concerns and was advised to ‘imagine I was a tree’, clearly perceiving my concerns as deluded. My advice is to find a good GP and to request referral as soon as possible, as early intervention comes with lasting benefits.

Upon receiving the Dyspraxia diagnosis years later, I felt relief as it explained many of the challenges and behaviours we had observed and not

SelfishMother.com
7
understood. As a parent, once you start reading about your child’s condition, it is hard to stop. I advise you to keep away from the internet and unregulated forums, and to stick with official organisations and charities for facts. On this journey, there is also a fear about what will pop up next. I took university courses, wrote articles, found a job as an SpLD assessor and went into school to talk about Dyspraxia. I now think knowledge was my coping mechanism. Knowledge is wisdom, but make sure it is from the reliable sources.

Daily contrasts with

SelfishMother.com
8
other children were less obvious in the early Primary school days, where the emphasis was on fun and finger painting. These days, other Primary 5 parents proudly display the Harry Potter trilogy their child is reading, whereas we are lucky to get through short graphic novels, reading a few pages a night. This is now a triumph in our house! In the beginning, this contrast stung slightly (I’m being honest here- is it just me who checks the homework folder of playdates to compare the reading level?) but now I understand that we need to take triumph in
SelfishMother.com
9
small gains and it is all relative. So long as our child is happy and learning at her level, these are our priorities. I recall when the school report came out in first year, and a new Mummy Friend declared “we should open them together and compare”. I swiftly excused myself and wanted to scream “SHE IS INTELLIGENT BUT SHE FINDS LEARNING HARD, SO A REPORT WILL NOT REFLECT HER ABILITY!” This has since been the case with a cognitive assessment (IQ testing) undertaken by a Psychologist who made a major scoring error which I would be unaware of
SelfishMother.com
10
without my training. But that’s a whole other blog…

As school has progressed, my daughter has required a high level of support. At first, I found it difficult to face the fact that her learning was so challenged. I think for many parents, there is a type of grieving process in light of any form of impairment that impacts their child’s life. Despite having amazing teachers and a supportive school, I was afraid of Child Planning Meetings and parent nights, in case I would have to hear something I was not prepared for. Brace, brace! Not knowing

SelfishMother.com
11
another parent of a child with similar issues made this harder. I have now gravitated towards a few other mums of children with similar issues- those who ‘get it’ when I tell them I have walked round the block twice to prepare myself for potential sensory issues en route home!

It is hard but necessary to acknowledge the ‘blame game’- I speak from experience, and from talking with other mothers. Parents may lay blame at each other’s feet in genetic form, whilst mothers often feel guilt at having ‘done something’ to cause their child’s

SelfishMother.com
12
problems. I tortured myself about the drink I had before I knew I was pregnant. I blamed myself for having a fast labour. Should I have requested an earlier induction? I questioned personality traits in distant relatives. ‘Did I damage her? Was it stress from my doctorate? Was she oxygen starved? It’s my fault’. NO- YOU DID NOTHING WRONG! Please remove all thoughts of blame, it is important to acknowledge and understand your feelings but to dwell upon them is pointless.

As a parent, when your child cannot learn like their peers there is a

SelfishMother.com
13
constant awareness that their school day will be challenging, sometimes resulting in acting out after a day of bottling up frustrations. Emotional fallout from invisible disabilities can impact the whole family. There is no denying that it is stressful parenting a child with learning differences, alongside being the most incredibly rewarding experience. Some days, frankly, I want to run away but many I’m so proud of her I could burst. We have experienced school refusal due to worries about learning and not understanding the curriculum. In the early
SelfishMother.com
14
days, sensory issues (common in children with DCD) would result in stripping off of uniform just as the school bell went. We have also experienced shoe-related sensory issues (slip on shoes rectified this) but these issues often improve and they have done so markedly in our case.

At one point, I was afraid to collect my child from school knowing the daily fallout would last long beyond the journey home. Sometimes, her hand is red from picking the skin on her thumbs due to anxiety- emotional and behavioural difficulties are common in children with

SelfishMother.com
15
Dyspraxia and other hidden conditions. Strategies that work for us include helping her to understand why she does this, teaching her to swap skin picking for wiggling her fingers, clenching her fists or using a fidget toy when she feels anxious.

I recall the time the Learning Support teacher declared ‘she has traces of everything, but not enough to be diagnosed’. I felt like I had been winded and the ‘what next’ internal loop re-awoke. Out my books and nightly internet searches came again! My advice to other parents is to focus on your child

SelfishMother.com
16
for the amazing person they are and don’t become obsessed about labels, as I did initially. They are the same child before and after, but as parents we are human and ‘labels’ can arouse concerns for your child and their future.

Our experience has confirmed that Home-School links are very important and we use a communication sheet daily to swap observations. In terms of keeping up with the curriculum, differentiation within the classroom is important so that children can learn at their own level. In my daughter’s case, she receives extra,

SelfishMother.com
17
differentiated learning support for literacy and maths and is exposed to general lessons alongside peers. She has access to a computer for typing and her teacher gives her 1:1 support. Children are aware of differences and it is important that schools have an Inclusion policy in place. Where there are friendship difficulties or bullying issues, Circle of Friends is an evaluated intervention with positive results. Our supportive school have introduced ‘Easy End’ before home time, allowing children to rid their worries and focus on positives of the
SelfishMother.com
18
day. What a positive difference this has made for our family. If your school does not have this in place- I would recommend asking them to do so!

So, what support is there for families and children? Following our Dyspraxia diagnosis, we were given leaflets to help with motor skills and sensory issues and that was the sum of it. I joined the Dyspraxia Foundation, which is a wonderful charity. Unfortunately, there were no parent support groups locally, and it really would have helped to have another parent to talk to. I think the absolute lack of

SelfishMother.com
19
parental support is one of the hardest things as a parent. I had contemplated starting my own group to support other families, but we shall see…

I previously wondered whether my own background as an academic made it harder for me to have a child with learning challenges, but I think for all parents it is a shock on some level when your child struggles with things other children find a breeze. In order to cope, there is a period of re-evaluation as to what matters and what is best for your child. Our mottos are ‘learning should be fun’ and

SelfishMother.com
20
‘your job is to be a child’. Many children with learning and attention challenges have self-esteem and confidence issues. I made it my business to shout from the rooftops about all the strengths my daughter has. She can make Power-point presentations; she likes to give presentations and make videos. She holds a pencil like she’s digging in the garden- so what!

My advice to any parent is to find your child’s strengths and then big them up. My daughter can’t write a coherent sentence but she can present to a classroom of her peers. Take the

SelfishMother.com
21
good stuff and run. Any parent of a child with invisible differences will understand that patience is a virtue and small gains and successes are cause for celebration.

I would hate for these thoughts to be perceived as negative, but I have wanted to share some of the issues we face on a daily basis. There have been days whereby I have been dying inside after a sensory induced dressing battle. I have forced myself to enter the playground, smile at other parents, hoping I appear less insane than I feel! Other times, I have been aware of stares as my

SelfishMother.com
22
child sometimes has a shrill loud tone- another intermittent aspect of her learning differences. I’m still wondering why she morphs into a broad Scottish accent on occasion though…? I have lied about my child’s diagnosis in the cinema to two middle aged women (because many people have never heard of Dyspraxia or sensory issues in my experience) upon receiving dirty looks whilst watching The BFG- a children’s film FFS! Every family has their story and overall we are a typical, mostly very happy family who just need to think a little outside the
SelfishMother.com
23
box to accommodate certain challenges. It’s been a learning curve and I think we’ve done okay so far.

As parents to children with or without learning differences, we all face challenges and will overcome them alongside our children. It may require shifting expectations and creating a new ‘norm’ and the truth is this can take time and acceptance. Our children are our children regardless of labels, quirks and blips. We love and protect them for it, perhaps even more so as a result? These days, the focus is on strengths, strengths, strengths and

SelfishMother.com
24
achievements however minor! I love the fact that the Harry Potter actor, Daniel Radcliffe and celebrity model, Cara Delivigne, alongside Einstein (probably), all have/had Dyspraxia. Parenting our neuro-diverse children requires us to be Educators, Teachers, Challengers, Advocates and strong people. I didn’t sign up for this- but I would not change it or my daughter for all the world!

Please google ‘Lottie Dyslexia’ to see her UTube vlog!

SelfishMother.com

By

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- 7 May 18

My gorgeous daughter is nine years old and to look at her you would not notice anything out of the ordinary. She was diagnosed with Dyspraxia (Developmental Coordination Disorder) aged 5, following an NHS Occupational Therapy assessment which placed her motor skills in the lowest possible category. Dyspraxia is primarily a disorder of planning and executing sequences of movement, yet despite the diagnostic focus on movement, it is also so much more than this. Medical circles use the term ‘developmental coordination disorder’ but the emphasis on motor skills ignores the wide ranging impact of Dyspraxia on many other areas.

Alongside motor issues, there may be challenges with ‘executive functioning’- planning, organisation, attention and memory. Speech production may also be affected, resulting in Verbal Dyspraxia for some children. In school, challenges with motor skills affect writing and many children with Dyspraxia also have dysgraphia (handwriting difficulties). The ‘dys’ family (dyspraxia, dysgraphia, dyslexia, dyscalculia) have a tendency to co-occur and are rarely found in isolation. In my daughter’s case, she has Dyspraxia, Dyslexia, Dysgraphia and is currently undergoing assessment for inattentive ADHD (formerly known as ADD). Dyspraxia does not affect intelligence, but challenges faced often make learning a tough journey. It is within a learning environment that these challenges become glaringly obvious.

There are quite a few ‘labels’ going on here, so I want to share a few thoughts about parenting, our journey and any wisdom gained, in the hope that it might help others on similar journeys feel less alone. One of the main challenges for me as a new mother, was knowing there was something ‘wrong’ early on, feeling isolated and constantly worried. I spent many baby group sessions wondering why my baby was so incredibly clingy and why she would not crawl off like the other children. I also wasn’t aware of many other children growling throughout ‘Baby Sensory’- although in retrospect it could be called ‘Sensory Overload’. I now know this must have been torture for a child with sensory issues. Parent fail moment!

Dropping her at nursery was traumatic for us both, and I felt as though she was perceived as ‘hard work’ and me as an overprotective mother. Despite being a January birth, we were told she was ‘school ready’ aged 4.5, and off she went to Primary school as the youngest in her class. As trainee parents, if only we knew then what we knew now- a double whammy of a very young child and one who had invisible (not yet diagnosed) learning differences!

To any parent out there who is in the ‘gap’ between ‘knowing there is something going on’ and diagnosis, my heart goes out to you. It is a lonely time and one which I spent afraid both of knowing and not knowing. I felt that if milestones were reached, health visitors were happy. I recall one instance when I shared some concerns and was advised to ‘imagine I was a tree’, clearly perceiving my concerns as deluded. My advice is to find a good GP and to request referral as soon as possible, as early intervention comes with lasting benefits.

Upon receiving the Dyspraxia diagnosis years later, I felt relief as it explained many of the challenges and behaviours we had observed and not understood. As a parent, once you start reading about your child’s condition, it is hard to stop. I advise you to keep away from the internet and unregulated forums, and to stick with official organisations and charities for facts. On this journey, there is also a fear about what will pop up next. I took university courses, wrote articles, found a job as an SpLD assessor and went into school to talk about Dyspraxia. I now think knowledge was my coping mechanism. Knowledge is wisdom, but make sure it is from the reliable sources.

Daily contrasts with other children were less obvious in the early Primary school days, where the emphasis was on fun and finger painting. These days, other Primary 5 parents proudly display the Harry Potter trilogy their child is reading, whereas we are lucky to get through short graphic novels, reading a few pages a night. This is now a triumph in our house! In the beginning, this contrast stung slightly (I’m being honest here- is it just me who checks the homework folder of playdates to compare the reading level?) but now I understand that we need to take triumph in small gains and it is all relative. So long as our child is happy and learning at her level, these are our priorities. I recall when the school report came out in first year, and a new Mummy Friend declared “we should open them together and compare”. I swiftly excused myself and wanted to scream “SHE IS INTELLIGENT BUT SHE FINDS LEARNING HARD, SO A REPORT WILL NOT REFLECT HER ABILITY!” This has since been the case with a cognitive assessment (IQ testing) undertaken by a Psychologist who made a major scoring error which I would be unaware of without my training. But that’s a whole other blog…

As school has progressed, my daughter has required a high level of support. At first, I found it difficult to face the fact that her learning was so challenged. I think for many parents, there is a type of grieving process in light of any form of impairment that impacts their child’s life. Despite having amazing teachers and a supportive school, I was afraid of Child Planning Meetings and parent nights, in case I would have to hear something I was not prepared for. Brace, brace! Not knowing another parent of a child with similar issues made this harder. I have now gravitated towards a few other mums of children with similar issues- those who ‘get it’ when I tell them I have walked round the block twice to prepare myself for potential sensory issues en route home!

It is hard but necessary to acknowledge the ‘blame game’- I speak from experience, and from talking with other mothers. Parents may lay blame at each other’s feet in genetic form, whilst mothers often feel guilt at having ‘done something’ to cause their child’s problems. I tortured myself about the drink I had before I knew I was pregnant. I blamed myself for having a fast labour. Should I have requested an earlier induction? I questioned personality traits in distant relatives. ‘Did I damage her? Was it stress from my doctorate? Was she oxygen starved? It’s my fault’. NO- YOU DID NOTHING WRONG! Please remove all thoughts of blame, it is important to acknowledge and understand your feelings but to dwell upon them is pointless.

As a parent, when your child cannot learn like their peers there is a constant awareness that their school day will be challenging, sometimes resulting in acting out after a day of bottling up frustrations. Emotional fallout from invisible disabilities can impact the whole family. There is no denying that it is stressful parenting a child with learning differences, alongside being the most incredibly rewarding experience. Some days, frankly, I want to run away but many I’m so proud of her I could burst. We have experienced school refusal due to worries about learning and not understanding the curriculum. In the early days, sensory issues (common in children with DCD) would result in stripping off of uniform just as the school bell went. We have also experienced shoe-related sensory issues (slip on shoes rectified this) but these issues often improve and they have done so markedly in our case.

At one point, I was afraid to collect my child from school knowing the daily fallout would last long beyond the journey home. Sometimes, her hand is red from picking the skin on her thumbs due to anxiety- emotional and behavioural difficulties are common in children with Dyspraxia and other hidden conditions. Strategies that work for us include helping her to understand why she does this, teaching her to swap skin picking for wiggling her fingers, clenching her fists or using a fidget toy when she feels anxious.

I recall the time the Learning Support teacher declared ‘she has traces of everything, but not enough to be diagnosed’. I felt like I had been winded and the ‘what next’ internal loop re-awoke. Out my books and nightly internet searches came again! My advice to other parents is to focus on your child for the amazing person they are and don’t become obsessed about labels, as I did initially. They are the same child before and after, but as parents we are human and ‘labels’ can arouse concerns for your child and their future.

Our experience has confirmed that Home-School links are very important and we use a communication sheet daily to swap observations. In terms of keeping up with the curriculum, differentiation within the classroom is important so that children can learn at their own level. In my daughter’s case, she receives extra, differentiated learning support for literacy and maths and is exposed to general lessons alongside peers. She has access to a computer for typing and her teacher gives her 1:1 support. Children are aware of differences and it is important that schools have an Inclusion policy in place. Where there are friendship difficulties or bullying issues, Circle of Friends is an evaluated intervention with positive results. Our supportive school have introduced ‘Easy End’ before home time, allowing children to rid their worries and focus on positives of the day. What a positive difference this has made for our family. If your school does not have this in place- I would recommend asking them to do so!

So, what support is there for families and children? Following our Dyspraxia diagnosis, we were given leaflets to help with motor skills and sensory issues and that was the sum of it. I joined the Dyspraxia Foundation, which is a wonderful charity. Unfortunately, there were no parent support groups locally, and it really would have helped to have another parent to talk to. I think the absolute lack of parental support is one of the hardest things as a parent. I had contemplated starting my own group to support other families, but we shall see…

I previously wondered whether my own background as an academic made it harder for me to have a child with learning challenges, but I think for all parents it is a shock on some level when your child struggles with things other children find a breeze. In order to cope, there is a period of re-evaluation as to what matters and what is best for your child. Our mottos are ‘learning should be fun’ and ‘your job is to be a child’. Many children with learning and attention challenges have self-esteem and confidence issues. I made it my business to shout from the rooftops about all the strengths my daughter has. She can make Power-point presentations; she likes to give presentations and make videos. She holds a pencil like she’s digging in the garden- so what!

My advice to any parent is to find your child’s strengths and then big them up. My daughter can’t write a coherent sentence but she can present to a classroom of her peers. Take the good stuff and run. Any parent of a child with invisible differences will understand that patience is a virtue and small gains and successes are cause for celebration.

I would hate for these thoughts to be perceived as negative, but I have wanted to share some of the issues we face on a daily basis. There have been days whereby I have been dying inside after a sensory induced dressing battle. I have forced myself to enter the playground, smile at other parents, hoping I appear less insane than I feel! Other times, I have been aware of stares as my child sometimes has a shrill loud tone- another intermittent aspect of her learning differences. I’m still wondering why she morphs into a broad Scottish accent on occasion though…? I have lied about my child’s diagnosis in the cinema to two middle aged women (because many people have never heard of Dyspraxia or sensory issues in my experience) upon receiving dirty looks whilst watching The BFG- a children’s film FFS! Every family has their story and overall we are a typical, mostly very happy family who just need to think a little outside the box to accommodate certain challenges. It’s been a learning curve and I think we’ve done okay so far.

As parents to children with or without learning differences, we all face challenges and will overcome them alongside our children. It may require shifting expectations and creating a new ‘norm’ and the truth is this can take time and acceptance. Our children are our children regardless of labels, quirks and blips. We love and protect them for it, perhaps even more so as a result? These days, the focus is on strengths, strengths, strengths and achievements however minor! I love the fact that the Harry Potter actor, Daniel Radcliffe and celebrity model, Cara Delivigne, alongside Einstein (probably), all have/had Dyspraxia. Parenting our neuro-diverse children requires us to be Educators, Teachers, Challengers, Advocates and strong people. I didn’t sign up for this- but I would not change it or my daughter for all the world!

Please google ‘Lottie Dyslexia’ to see her UTube vlog!

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Mummy of two gorgeous girls- 9 and 7. I was once a clever academic (a psychology Doctorate was gained somewhere along the line) but now find splashing in the sea with my family is much more fun! Over the years, I’ve been lucky enough to work on research projects as diverse as mental health in unaccompanied asylum seeking children, addictive behaviour and parental adjustment to a child’s chronic illness. My passion now lies in promoting Inclusion and strength based approaches to neurodiversity.

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