Dyspraxia, Dyslexia and an Anxiety Disorder: Living with and Loving our Special Son, an interview by Kirsteen McLay-Knopp with Kirstin, a kiwi Mum

Family FYKirstin kindly allowed me to interview her about life with and for her son Toby, who has recently been diagnosed as having severe dyslexia and mild dyspraxia (a developmental disorder which affects fine motor skills and can present as problematic for children undertaking tasks such as writing and tying shoe laces).  As well as this, Toby, age 9, has been diagnosed as having an anxiety disorder.

“When he was little, Toby never crawled, he just shuffled along on his bum,” Kirstin recalls.  “Apparently that can be an indicator of dyslexia.  Then, once he started school, it became clear that Toby had major difficulties with reading and writing.  We asked the school whether he had dyslexia, but they said he didn’t.  By Year 4 Toby was playing up and causing major disruption in class.  We know now that it was because he couldn’t understand and he wasn’t receiving the help he needed, but the school didn’t recognise this at the time.  Toby was usually punished by being sent out of class… which, of course, was exactly what he wanted.”
Kirstin and her husband felt certain that there was more to Toby’s behaviour in class than just “naughtiness”.  Finally, they made the decision to change schools.  At the new school, Toby’s learning difficulties were identified within a week.
“It was such a relief to have professionals say that there were issues behind the behaviour and learning difficulties,” Kirstin recalls.  “You often feel these things in your heart as a parent, but it’s really great to know for sure, it means you can move forward.”
Toby’s dyspraxia and his anxiety disorder also affected his brain-bowel co-ordination.  Kirstin says that knowing this makes it easier to understand him having “accidents”.  “Not knowing and thinking that this shouldn’t be happening, that a kid his age should be getting toileting cues, sometimes made us harder on Toby than we should have been,” she says.  “Understanding is the key, then you can look at strategies for moving forwards.  With help from support organisations, we’ve now been able to put measures in place to help Toby in this area too.  The advice of other parents who have “been there” is invaluable, as is the reassurance offered by professionals with experience working in this field.”
Kirstin says now that it is apparent what the issues are, measures can be put in place to help Toby cope.  “His anxiety disorder means Toby gets stressed if, for example, there are lots of other kids around making a noise,” she says.  “He now knows when he needs to go off for quiet time by himself, which helps him get “back on track” and his teachers accommodate that too.  As parents, his Dad and I have had to learn to be more patient, as our stress rubs off on him and his anxiety disorder makes him more sensitive to everything.  Lots of children are like this anyway [pick up on parental stress], but with Toby it’s magnified.”
“Toby has always been Toby with his own special personality, which we love,” Kirstin says, “so there’s a degree to which his diagnosis hasn’t affected our family too much, we’d already lived with who he was for 8 years before receiving a professional diagnosis.  But it just feels good knowing that there is a reason for behaviour which otherwise can seem quite random and frustrating at times.”  Kirstin says children with dyspraxia don’t cope well with spontaneity or changes from routine.  “I heard one Mum say that with dyspraxic kids you can be spontaneous… so long as you give them three weeks notice first!”
Dyspraxia and dyslexia can be genetic, as can childhood anxiety disorders (which may or may not carry on into the adult years), Kirstin says.  “My brother had dyslexia, but it wasn’t picked up until he was in High School,” she says.  “Teachers and others are more aware of these conditions and attuned to how they present than they were some years ago.”
Toby is now in Year 5 at Primary School and, thanks to extra support and a teacher aid, has recovered most of the reading he had fallen behind on.  “It can be hard for him,” Kirstin says, “his little brother, who is two years younger, finds reading easy and Toby takes this and other things very personally.  We try to encourage him by stressing how far he has come in the last year or two and being honest with him about the fact that he was not receiving the right support for who he is before.  We recently went to an Intermediate School Open Night and I was so thrilled that Toby was excited about the future… in the past the thought of big changes like this could bring out his anxiety… he’s even been known to make himself throw up as a result of becoming anxious, like at the start of a school marathon.  We used to find homework very, very difficult too.  Toby hates writing, but fortunately some strategies which are used for children with dyspraxia and dyslexia have been put in place to help with this.  As Toby’s confidence grows in any particular area, his anxiety levels are also better able to be managed.”
Kirstin says she and her husband hope that in the short term future Toby will “integrate into Intermediate School without too much difficulty.  Things have certainly gotten so much better with him since he has been diagnosed and also as he’s gotten older.  For the long term future we just hope that things won’t seem so hard for him and that he’ll find something he really enjoys and can work at.”
Kirstin says it’s really important for parents who feel their child might have issues affecting their learning, to talk with others and not feel shy or embarrassed.  “People often don’t want to think that their child is ‘different'”, she says, “especially in the case of ‘hidden disabilities’ such as Toby’s… it can be easier, sometimes, to bury your head in the sand and ignore what you know in your heart.  In our case, we had a gut feeling and we didn’t let up until Toby received the appropriate support.”
Photograph above: Toby kayaking with his brother and Dad, thanks to Kirstin and her family for supplying this 🙂
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Dyspraxia, A Parent’s Perspective, by Tania Broadley

Dyspraxia Collage

I have four children, all girls.  Katie is 10, Emma 6 and my younger twin girls, Jamie and Alyssa, have just turned four. Three of my girls have dyspraxia.  Emma also has ADHD.  Jamie does not have dyspraxia.  [For more information about ADHD, attention Deficit Hyperactivity Disorder, see The Forever Years post at the following link:  https://theforeveryears.wordpress.com/2015/03/10/understanding-kids-with-adhd-an-interview-with-a-mother-who-knows/  ]

Dyspraxia is one of many “hidden” special needs.  It is a neurological (brain and nerves) disorder in which messages from the brain to the muscles are disrupted, thus effecting physical and gross motor skills– movement and co-ordination.  Early intervention with occupational therapy, physical therapies and sometimes speech therapy help children with dyspraxia to reach their potential. [Source: Medical Questions and Answers, Australian Women’s Weekly, New Zealand Edition, February 2014].

Bringing up children with unique needs is mentally, physically and emotionally draining for me.  On the good days it can be very rewarding.  I feel a real sense of achievement when I overcome challenges.  Katie was diagnosed as having dyspraxia at the age of five and Emma at about four years old.  Alyssa is under Vera Hayward [Children’s Support Programme] and at this stage her dyspraxia seems to be mild.  I did not realise that Emma had dyspraxia until I was pregnant with the twins!

Some days can be overwhelming, juggling four girls, hospital appointments, dyspraxia and ADHD.  Other days I feel relaxed and confident.

My husband and I used to avoid a lot of social gatherings with the girls, because we found it too stressful and we felt judged because of their behaviour (like outbursts of temper).  Meeting other parents in similar situations to ours has given us the confidence to go back out on family social outings again.  It is also very comforting to know that there are other families out there with multiple (twins, triplets or more) children and unique needs, like ours.

Our girls are a true blessing to my husband and I.  I look forward to seeing what journey they each take in life.  They have made me a stronger, more confident mother and I’m so very proud of them all.

Thanks to Tania Broadley for sharing her family’s story with “The Forever Years”.

Dyspraxia 2 Collage

Some Further Information about Dyspraxia…

Developmental Dyspraxia (also known as Developmental Co-ordination Disorder and the Clumsy Child Syndrome) is a neurologically based disorder of the processes involved in “praxis” or the planning of movement to achieve a predetermined idea or purpose, which may affect the acquisition of new skills and the execution of those already learned. More specifically, it is a disorder of praxis, or the process of “ideation” (forming an idea of using a known movement to achieve a planned purpose), motor planning (planning the action needed to achieve the idea) and execution (carrying out the planned movement).

Dyspraxia may affect any or all areas of development– physical, intellectual, emotional, social, language and sensory– and may impair the normal process of learning, thus it is also a learning difficulty.  It is not a unitary disorder (like measles or chicken pox, where all those affected share a common set of symptoms) and affects each person in different ways at different ages and stages of development and to different degrees.  It is inconsistent, in that it may affect the child one day, but not the next– as if information is sometimes put away “in the wrong drawer”.

Dyspraxia is a “hidden handicap” as, under normal circumstances, children with dyspraxia may appear no different from their peers, until new skills are tried or known ones are taken out of context, which is when difficulties may become apparent.

In many affected children, dyspraxia occurs with or as part of other neurological conditions, so defining common symptomsdownload may be confusing.  Therefore a diagnosis, naming the disorder is often very difficult and sometimes the closest may be “shows some dyspraxic tendencies”.  A major international, multi-disciplinary conference on dyspraxia was held here in Aotearoa/ New Zealand in 1997, making it easier for parents to find a professional who is confident in making a diagnosis. If you think that your child exhibits some or all of the symptoms of dyspraxia, talk with your GP or peadiatrition about your concerns.

The following is information for teachers and others interecting with children with dyspraxia to be aware of…

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Related Links/ Information

New Zealand Dyspraxia Support Group:  http://www.dyspraxia.org.nz/

Australian Dyspraxia Support Foundation: http://www.dyspraxiaaustralia.com.au/support-group

Dyspraxia USA, resources: http://www.dyspraxiausa.org/resources/

Dyspraxia Foundation, UK (has some great film clips about living with dyspraxia for adults and for kids:  http://www.dyspraxiafoundation.org.uk/

Dyspraxia Association of Ireland: http://www.dyspraxia.ie/

Facebook Support Page for families: https://www.facebook.com/pages/DYSPRAXIA-Families-Support-group/115023848519242