The ‘undulating tsunami’ of the COVID-19 pandemic brought massive challenges to families with children with additional needs.

One Cork mum praised her children’s Early Intervention Team for their support – in-person and virtual – over the last year and said her family were trying to see the silver linings in the dark COVID-19 cloud.

“We’ve had an undulating tsunami and then it calmed down and then we had another tsunami. We’ve had to draw on our psychology support quite a bit for both kids. The first wave seemed to affect one quite severely. The younger one seemed to just breeze through it. This time around it has completely flipped,” said Dearbhail Gildea.

“We conquered one in the first wave and got everything calm again with open conversation and we got through it, got engaged with the team. They were great to engage with the school to help us work through the situation. Then the schools closed again and new circumstances arose. But we were able to pick up the phone, and we were able to do some Zoom calls, and that helped.”

Autism Spectrum

Dearbhail, who is based in Dunmanway, has two children, a son and a daughter, who are on the autism spectrum. Her family have been engaging with their Early Intervention Team since 2012 and it was the team who helped them cope with the struggles that lockdown brought.

Progressing Disability Services for Children and Young People (PDS), the new model for Children’s Disability Services (CDS), aims to provide a clear pathway and fairer access to services for children with a disability and their family, based on their need, not diagnosis, where they live, or go to school. The emphasis is on working in partnership with parents and education staff to support children with a disability to reach their full potential.

Reach full potential

Dearbhail highlighted the fact that the service showed how helping the children to reach their full potential was a ‘two-way street’, with the family being provided with the tools to manage home life with their children’s additional needs.

She also praised the role the ‘key worker’ assigned to her family has played and the value of the team taking a joined-up interdisciplinary approach to the children’s treatment plan.

“At the end of the day, we’re the parents, we have to figure out here at home, we have to make it work.  We’ve managed, in one way. I have one child who is extremely social and wants to be out there meeting people, and another who never wants to go out the door so it is always a balancing act. Sometimes with the key worker it is about venting. It has been an interesting time, and a great time of learning. Last year there were definitely issues that crept up on us from a psychology point of view that may not have surfaced for some time had we not been put in this situation. So we have to take the silver lining on this one. We did quite well conquering it as we did.”

Dearbhail explained how the family first started with the team.

“My son Gearóid started with speech and language therapy back in 2011. And then we transferred into an Early Intervention Team in 2012, and then we had a natural transition into the West Cork CDS in 2013. Then a couple of years later, my daughter Martha came on board and we had her assessed into the system as well,” said Dearbhail.

Positive experience

“From the outset, we have had a very positive experience. We would have met the Early Intervention Team  -  the speech and language team, the occupational therapist and the physio. They were the initial three people that we met with. It was fantastic to actually get the different opinions of the three different disciplines for a child. It was superb. We would have always considered that they engaged extremely well with us and from the outset, as I said, have had a very positive experience.”

The Early Intervention Team developed a family plan and a key worker was assigned.

Importance of key worker

“I can’t stress enough the importance of the key worker. For us, that person has held the whole thing together, it has been the core component of the team and how it works. I know that puts a lot of responsibility on the key worker. As parents, it is great to be able to pick up the phone and even if it is just to reassure us that we are doing everything right and just have to get through it. That means an awful lot.

“The team will sit and listen to us, and we are able to express very openly what’s going on and they can streamline then the priorities for us going ahead. I think overall, the team have been very beneficial to us, they really are doing a brilliant job for us in providing us with the tools that we need here at home. It’s great to know that it’s not just one discipline that you are dealing with, we are covering a range of disciplines in speech and language, OT, psychology, so it’s great that they can engage with each other as well. And we have the opportunity as well to have maybe speech and language therapy and OT together and that’s been hugely beneficial to us.”

Dearbhail said that the plan helped alleviate a lot of the frustration her and her husband were experiencing.

 “I suppose we can feel ourselves quite fortunate that we’ve been in the service quite a long time you do build up good relationships. Again personalities can change as people move on to other things, we’ve had new individuals that we are working with but, at the same time, it never felt disjointed in any way. There was always a cohesion to the system. On top of that, the kids are going to the same buildings all the time regardless of who they are going to see and that was crucial for us as well. It helped a lot. And for us we felt very much part of the system throughout the whole thing,” said Dearbhail.

Tools to cope

She admitted that the system is not perfect, but said it does provide parents with the tools they need to cope. “We can never say it is a perfect system. I think that one thing that everyone should be aware of is that it comes back to the individual family. At the end of the day, the service is there to provide us with tools that we need, there’s no magic wand in these situations. As a family, we have to make a strong commitment to keep engaged, and believe me, you hear stories of people who haven’t had an appointment with their OT or their speech and language therapist for a long period of time and I completely understand that too because the system is just overwhelmed with numbers,” she said.

“Like anything, the system itself needs support from government, from legislation, and so forth. For us, we just always made the point that, okay, it can get frustrating waiting for appointments but I have to say, having a person appointed to us, a key worker, even if I can only have a conversation with them on the phone to express concern, sometimes that’s enough to alleviate a crisis.

“I think for the teams to work successfully, there has to be really positive engagement from the parents, and we have to keep pushing forward. If the answer is that the service isn’t there, keep pushing for it. The more we ask for it, the more people will understand there is a need for it. And hopefully in time it will come together for those who really need it.”