The non diagnosis

As I mentioned earlier, last week I met with the educational psychologist, JP, for the second time. She had some interesting things to say.

1. She still thinks Willow has developmental dyspraxia - despite other professionals pointing out that Willow doesn't demonstrate all the "classical behaviours" of dyspraxia. After talking further with JP and reading more about dyspraxia, I tend to agree with her.

2. JP thinks that Willow is highly intelligent with a severe disability (as opposed to being of average intelligence with a mild disability). On Willow's testing she performs in the low average range - which makes her look like she is only slightly under performing (ie, there isn't too much to worry about) when in fact she has significant issues that need to be addressed (but the significance of these issues isn't being picked up because the standardised testing has its limits). This actually makes sense to me - because it explains so much about Willow and the way she functions. eg, why she intuitively understands so much about the world and how it functions and yet she has such difficulty processing the information around her...

3. JP does not think Willow has a learning disability per se. This might seem a bit strange given #2 but JP pointed out that in her testing Willow did better with each subsequent question (which get increasingly harder) - so once Willow absorbed what she needed to do on the test (which took a few questions because she is slower to process information than average) she did better and better (eg, she got the first 5 easier questions wrong and the second 5 harder questions right). If she had a learning disability she would do worse and worse as the questions got harder.

So I've been doing a lot of reading about dyspraxia and I'm basically convinced that we are on the right path. I'm arming myself with information so that next time we see Willow's pediatrician he does not dismiss me out of hand and I actually find out why he DOESN'T think Willow has dyspraxia.

Because Willow doesn't qualify for any public support at school we have engaged JP privately to be our advocate. She will deal directly with the school to make sure that Willow gets what she needs. JP said that when she first met us she was so incredibly concerned about our situation. She felt that the school was totally unprepared for Willow and we were headed towards disaster. She has been amazing in addressing all the neglect I have received at the hands of DECS (and she is charging me a pittance, which is the best thing of all!)

Getting all this information, finding someone who will listen to me and hear my concerns, finding someone who does NOT dismiss me, who does not say with a wave of their hand "she'll be fine...", has been very emotional for me. The last five years have been so very sad and traumatic in so many ways. I have been dismissed over and over and over and over again. Here we are finally moving closer to a (non) diagnosis which brings both some relief and certainty but also its own gut wrenching grief because the future is neither clear nor easy.

We have a tough road ahead. A diagnosis is a nail being hammered into a coffin. It is letting go of hope and dreams, it is accepting that life has irrevocably changed. Grief is not linear and during times of transition it hits harder than other times, because that is a time when it becomes clear that your child does not "measure up" in the way most kids do.

So here are some of the things about dyspraxia that I have been reading that make me exclaim, "OH MY GOODNESS, THIS IS WILLOW!!!"

"Symptoms are evident from an early age. Babies are usually irritable from birth and may exhibit significant feeding problems." [Willow was a miserable baby. She cried constantly, was never happy in herself. She had huge feeding issues from day one... you can read all about it here.]

"Babies are slow to achieve expected developmental milestones. For example, by the age of eight months they still may not be sitting independently." [Willow didn't sit independently until 10 months. She didn't walk until 17.5 months.]

"Children with dyspraxia may demonstrate some of these types of behaviour:

are late in reaching milestones (rolling, sitting, standing, walking, speaking)
have poor awareness of body position in space
have difficulty hopping, skipping, jumping, catching or kicking a ball,
have difficulty pedalling a bike
are intolerant of having hair or teeth brushed, nails and hair cut
have very high levels of motor activity and are unable to stay still
have high levels of excitability, with a loud/shrill voice
are easily distressed and prone to temper tantrums
are often anxious and easily distracted
appear not to be able to learn anything instinctively but must be taught skills
constantly bump into objects and fall over
have continued messy eating
have poor fine motor skills, difficulty in holding a pencil or using scissors
produce very immature art work
are slow to establish laterality (ie, right/left handedness)
have persistent language difficulties
are sensitive to sensory stimulation, including high levels of noise
have problems with comprehension
have limited concentration and often leave tasks unfinished
have difficulty in keeping friends or judging how to behave in company."

[These are just a number of the behaviours that I've found listed on various websites which I've listed on the right hand column in my blog. I've picked out the behaviours that apply to Willow. I'd say she has about 80% of the behaviours that I have read about.]

This made me cry....

"At home, life can be a challenge, both for the dyspraxic child and for those around her. She may be incapable of being anything but noisy at times. The constant need for repetition of her own statements and questions, our answers and questions and for overt planning can be trying. She needs extra attention, which may cause contention among other family members. Dyspraxia affects judgement on all sorts of issues and may affect the ability to pick up on subtleties. Relationships between all family members carry extra strain. At some stage the child will need to understand the disorder as will all family members.

[All true. The strain on our marriage, especially, has been immense.]

And finally,

"Dyspraxic children are normal, bright, lovable, intelligent children who have difficulty planning and organising appropriate actions or behaviour. The understanding and help of all who deal with them is an essential part of their learning process. A dyspraxic child is not dumb, not stupid, not lazy and seldom uncooperative."

If you've made it to the end of this post congratulations. In fact, if you've made it this far in my blogging journey, congratulations. It has been a tough road to travel and it is by no means over yet.