This is the first post I have done in months, things have been fairly busy. I probably could have been blogging about all the goings on whilst it was all happening but to be honest it is hard to find the time and energy these days.
Here’s a little update on where we are with Jack and his assessments therapies etc..
Jack had a couple of occupational therapy assessments, one in February and we were supposed to have another soon after, but we only got the second one there at the end of April as they were short on Occupational Therapists. The OT is now going to do a school visit before the report is completed. Jack had an appointment with a paediatrician at the hospital in March. I was expecting Jack to get his official diagnosis of Dyspraxia at this appointment, which we had been waiting almost two years for. But no, as the latest OT assessment wasn’t completed, I was told to come back in 6 months time!! The whole appointment was a whirlwind I didn’t even get a chance to discuss Jacks emotional and behavioural problems, the actual paediatrician herself was only in with us for a few minutes, not quite what you expect after waiting so long for an appointment.
I’m expecting the OT report to be completed before the end of this month. I asked the OT about the kind of help is Jack likely to receive when the assessment is completed. I was told that they are rolling out a “new model”. Where the parents go in for ONE workshop to learn how to help their child achieve a goal and you go back in a few weeks to say how you got on with it. So basically Jack will not be getting any occupational therapy from a trained OT on the HSE (Irish public health system). After 2 years of being on the waiting list, this is all we are getting, Jack doesn’t even get to see an Occupational Therapist. I wish I had known this back in 2015 when he was originally assessed rather than waiting almost 2 years on non-existent services.
Back in 2015 when Jack had his original assessments, which is called the Assessment of Need, they told me Jack would be referred for a psychology review in 12 months. They told me the waiting list is about 12 months, so they would put him on the list. The Assessment report also confirmed this. Both I and Jack’s school have been trying to chase this review. I eventually received an e-mail from the Disability Officer saying that she has been in touch with the psychology department and they have backdated Jack on the list to October 2015 (the date his assessment was completed). So he obviously was never on the list in the first place! The waiting list is 81 weeks which means he should be having his appointment any day now. So it is a good job I chased this otherwise he would never have been seen.
The public heath system here in Ireland is an absolute joke. “Early intervention is key” is what we are told. It is so important that children get services and assistance early, to lessen the impact of their condition as they get older. My situation isn’t the worst by far. There are kids with greater difficulties and needs than Jack out there who are not even getting the assessments let alone the services. These poor kids are just left to struggle on. Now I have to try to find the money from somewhere to get Jack private OT and physio. What annoys me most is that I could have done this two years ago, had I known, firstly that this whole process would drag on this long and secondly that there would be no services at the end of it.
I have had a few visits to Jack’s school and they have now referred Jack for the “School Age Disability Team”. This team will consist of a Psychologist, Occupational Therapist (OT), Physiotherapy, Social Worker and Speech and Language Therapist (SLT). This has softened the blow a bit. The only problem with this is there is a 12 month waiting list. So he will have about a year with no help from the public system. This is something else that could have been done a year ago. What I have learnt from this whole process is that you need to keep chasing and enquiring the whole time in regards to assessments, waiting lists and services, otherwise you can be overlooked or simply fall out of the system.
My main concern for Jack is his emotional wellbeing. Jack can be extremely quiet and withdrawn in school and have full on aggressive melt-downs at home. Also the couple of little friendships he had in school seemed to have disappeared over the past few months and Jack seems to be playing on his own a lot at break-times in school. He seems to need help with social skills. Thankfully the school have set up a little buddy group that meet-up in the hall for part of the lunchtime break, which will hopefully help a bit.
I have been doing quite a lot of research into OT and physio activities that we can do at home to help Jack’s fine motor skills and build up his core strength amongst other things. Pinterest has been my go to place for all things therapy related for Jack. I have boards for OT, Physio, Social skills, Emotions & behaviour plus many others. My Pinterest page is here
So for the next couple of weeks it is more waiting and then more chasing for the OT report and the psychology review.