Concerning Grace’s sleep difficulties, I contacted our CDNT in early summer where I took the opportunity to ask about Grace’s November start with the CDNT’s services as set out in her service statement from May last year. I was informed that she would not have access to those supports then and there was no guarantee of a date in 2025.
Grace’s service statement, as per law, should have reflected the needs set out in her AON report. It doesn’t. That document was supposed to be reviewed this past May. It wasn’t. We, as her parents, were also to be brought in to discuss it, but we were informed of neither. We weren’t. These are matters we are now pursuing legally.
It’s no form of compensation, but we are blessed that Grace has just started her second year in an excellent autism specific school. Among the myriad of public and private waiting lists, it was a rare but vital win. Grace had not been accepted to several schools such as the ASD class in our local one that Ollie attends due to oversubscription.
Her commute is a long one, a 65km return journey across Dublin, but she loves her class and she is making incremental developments. Yet her school has no multidisciplinary support, which so many special schools have been crying out for since the pandemic. The expertise of a full multidisciplinary team to guide the staff to support the children is essential.
We are under few illusions about Grace’s development. Small steps is all you can ask for, and we cheer them enthusiastically. Autism is not a linear condition. It demands a deeper kind of understanding, abundant with patience and praise. If you are being true, before you celebrate the wonderful child you have, you must first mourn the one you don’t.
Expectations, parents of autistic children are regularly told by experts, are a no-no. That is tough to hear but it is accurate. It’s compounding that the HSE use the same language to explain their delays. “I just want to manage your expectations” is a cruel phrase, even crueller when you’ve been hearing it for four years.
On one occasion a couple of years ago, I was told that my wife and I would be better speech and language therapists than a clinical professional. You don’t need a journalist’s nose to recognise when you are being gaslit.
As alternatives to the lack of therapies, workshops have been provided, attendance at which is supposed to be optional but woe betide if a parent isn’t in a position to attend because they are working or worn out. An absence is held against you almost as a black mark.
It’s not that those who work in this area don’t care — I genuinely believe they do — but I can’t help feeling they have been conditioned by their environment. They have become so numb, so overwhelmed, so desensitised to delivering bad news that it has become second nature to them.
Essentially, what has been forgotten is that the family are supposed to be at the core of their efforts. “Person-centred services” is an empty phrase. Funding/waitlist-centred services would be a more accurate title.
Early intervention, once a buzz phrase for ministers, is also a husk of an expression. If they haven’t already realised it themselves, their PR advisors have wisely stopped them from using the term because it means zip.
As this current Coalition are all but out the door, they have failed to implement their
National Autism Strategy as stated in the programme for government. Forgive me if I wasn’t doing cartwheels reading up about the recent launch of their autism innovation strategy. Until such time as what appears to be a postcode lottery means of assisting our children is ended, colour me unimpressed.
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Sharon and I know we are not alone. Among the thousands, there are four other Irish sports journalists that I’m aware of who have children who are neuro-diverse. There are so many families facing gauntlets and what unites us is that we have to fight for everything.
It is difficult and can often be terribly lonely. The journey can be brutal. Childminders in the past who after a day or two said they could no longer look after our daughter but were happy to keep our son because he wasn’t such a handful. We have learned only too well that rejection comes passively, politely, and in silence too.
No child’s life should be reduced to paperwork and pass-offs, but in Grace’s case that’s how it feels. It is enraging that the most vulnerable people in Irish society are suffering because of dysfunctionality and downright failure.
What Cara Darmody has done advocating for her brothers and their need for clinical supports is incredibly admirable. The State has let down John and Neil as it has her. No teenager should have to kick up a stink for services.
In our own way, we will continue to make a fuss. For Grace, always.
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