Ms Linda Whitmarsh:

In terms of regression during Covid, one of my boys is Finn and he has always had a lot of complex care needs. He needed his therapy and intervention years ago. During Covid, as the schools were closed, he completely got out of his routine. Everything was topsy-turvy and it was so hard to keep him regulated and focused. As a family, we took him for walks and did everything that he enjoyed. One hears stories about how bad the HSE is and how services are so awful yet if one had come to live with us during the time of Covid one would have discovered that it was an absolutely horrific time. It was the worst time that we have ever experienced, and worse than all of his hospital admissions due to cystic fibrosis, because Finn got into a routine of having faecal smearing episodes. At night time we would have settled him in bed but later when we went into his room to check on him we would discover that the walls, floor and the child were covered in faeces. These episodes lasted for three months. My husband and I are strong together but seeing our child standing in his room and covered in his own faeces took its toll. I resorted to ringing occupational therapists and begged them for assessments or an appointment for Finn but we just got a phone call from someone who outlined strategies but we had already done all that. Had Finn intervention beforehand then maybe these episodes would never have happened because he would have been able to regulate himself and we would be able to deal with that.

We found it hard to deal with these episodes for three months whereby we had to clean his bedroom every night and sometimes two and three times a night. It was only later that we figured out what was going on. I mean that these episodes happened because his oldest brother went to bed a little bit later and as a result Finn wanted to act out. However, as Finn is non-verbal he could not tell us that. Had he got an intervention, and speech and language therapy, when he needed it, when he was four or five years old, then we would not have found ourselves in such a position and where we are today.

Early intervention is so vital and is part of Article 25(b) in the UNCRPD but that has not happened. I will always regret that Finn did not get early intervention. That regret keeps me up at night along with worrying about what will happen to him when I die or when my husband and I are no longer around. We also regret that so much time has elapsed without interventions because Finn only said the word "dad" last week. We wonder if Finn had gotten an early intervention would he have said the word "dad" four years ago.

What can be done now? Finn came out of the period of Covid and that took a lot of work. We wonder how much better he would be had he received services in time. In fact, the services were too late to benefit him. We, as a family, went through an awful, hard three months and even his brothers saw that. It is hard for a whole family to experience that and explain it to our other children.

One of my children is waiting four years for primary care and another boy has waited a long time for assistance from the children's disability network team, CDNT but recently got services. One of our committee members has a child who has been recently diagnosed with autism spectrum disorder, ASD. The child's name was put on both the primary care list and the CDNT list in the hope of getting services quicker because the availability of services is so bad. Being placed on both lists should not happen. I mean if one needs one service then one will be placed on the primary care list and if one needs multiple services then one is placed on the CDNT list. That member of our committee was told that if she needs to get a private assessment then to do so but ring the HSE back so they can take the child's name off the lists. So that is what is happening in my county at the moment.