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 🙂