We took Isla to an Educational Psychologist to try and get a better picture of where she is at.
She has made so much progress in recent times. In particular her verbal language and comprehension have improved but I suspected large gaps remain.
I hoped to get some ideas on how to tackle her areas of learning weakness and to create a workable plan for her last 2.5 years at primary before starting college.
The assessment consisted of two appointments of two hours duration. On the first appointment Isla's cognitive level would be tested. The second would focus on her academic level and capability based on the results of the first test.
On our first visit, Isla was a little apprehensive going in but once there was happy to play with the toys while I chatted to the psychologist about her history and what I wanted from the assessment.
Then it was Isla’s turn to get some testing done or do some “jobs” as the psychologist liked to call them.
For the next two hours she did many activities such as pattern recognition, verbal comprehension and pairing, working memory activities and some number work.
I decided to sit in during the testing and thought she had done pretty well. I was proud of the explanations she had given to some of the verbal questions and her focus.
She even knew the answers to some of the harder questions. Our Paediatrician had warned me that these types of tests may result in an Intellectual Disability diagnosis.
But while I sat there I thought to myself that she obviously didn’t know Isla very well at all.
I was actually wondering how I could justify the ORS funding* we had been given when her results came out better than expected!
However I was suddenly brought down to earth with a large thump! Isla was sent out to play and we went through the results.
The verbal section that I witnessed did come out average for her age but everything else fell well below.
This resulted in her falling into a low intellectual disability category. It was explained that her verbal ability can lead others to believe that she is functioning higher than she actually is.
This was the first hard truth of what was to come.
So what is low intellectual disability (ID)?
The diagnosis of ID is based on measuring a child’s learning and problem solving skills known as IQ (Intelligence Quotient) and also their adaptive behaviour. What they can do in comparison with children the same age, for example everyday social skills, routines and hygiene.
For Isla her IQ was slightly lower than 70. Her age functioning was 6.5-7 years and I was told that it most likely will cap here or near here.
This puts her in the bottom 2% of the population. This is consistent with her receiving ORS Funding, no more feeling guilty that she doesn't qualify - there's one silver lining!
Although Isla has good verbal skills, she cannot think laterally which is quite common in those with autism. We then talked about what this means for Isla’s future.
She will never get normal employment unless with a mentor who can give her a task and supervise her.
She is unlikely to live fully independently when she is older. Her idea of socialising is not like the way we like to socialise.
Hers is very tasked based. We should not worry about the academics but concentrate on skills that will help her be independent in the future.
She will never get close to NCEA and will always operate at a pre curriculum or primary school level.
There was nothing said that I didn’t know deep down but to be told it so directly hit me harder than I thought it would.
The last snippet of hope that she would suddenly catch up was pretty much quashed in that room. I was a little numb driving home. I couldn’t speak.
I felt this huge, overwhelming sadness for Isla and this huge sense of responsibility.
This is the chronic sorrow I have talked about before in my blogs. Something that a special needs parent deals with occasionally when hit with the reality of their situation.
That punch in the gut that hits you when you let your guard down.
However once I had time to process and work through those feelings you realise nothing has changed. Isla is still Isla.
In some ways it takes the pressure off me to keep looking for ways to get her to progress and wondering if we're doing enough.
We are much better to teach her the value of money, how to prepare food and cook than worry about basic maths facts and spelling.
It will help her a lot more for us to work on her social skills so she communicate effectively with others rather than trying to get her to write stories.
We just need to concentrate on her having a happy life doing things to the best of her capabilities than to stress her to do things she actually isn’t capable of.
She is totally in the right environment at school. Being in a satellite class is perfect as anything else would be way too stressful and counterproductive for any learning. Her brain has to work so much harder with everything she does.
Even a visit to a stimulating environment can exhaust her (which it quite often does).
We had the second appointment yesterday and I took along my husband so he could hear the explanation by a professional first hand rather than my relayed attempt.
We didn’t sit in for her testing this time but went and had a coffee and came back for the overview again.
This time I was more prepared and wasn’t so much of a shock when Isla was showing well below in most areas. Although she is in Year 6 she is more consistent with Year 2.
Do I regret going through this process? No. Although it has been a huge reality check and hard to take in, it was almost refreshing someone giving it to me straight.
We now have a baseline of where Isla is at so can focus on the things that matter.
*The Ongoing Resourcing Scheme (ORS) provides support for students with the highest level of need for special education in New Zealand.