Ms Ciara Jones:

I opened up the hub initially because I did not want anyone ever to feel as lost and as lonely as I did when my son was diagnosed. I wanted to create some sort of safety net for parents of newly diagnosed children. When they come through the door, they are really in crisis. They are in an awful state. Initially, when they contact us we read their emails, which are very much about the child, their diagnosis and what they feel they need to put in an email to get an appointment. Very soon, after the parents come in, it is about the emotional support they need for themselves before we even move on to the children. We see parents who are broken and are very lost. As parents or as expecting mothers, we have expectations. We assume our children are going to go to school and to talk, but when your child is diagnosed as being autistic, those expectations do not exist anymore. The child might not go to school and they might not be able to speak. I never thought my child would be unable to say "I love you". I spend some of the time wondering if he even feels loved. They are not things we expect to have to deal with as parents. Parents who come through our doors are so desperate. It is the breakdown of everything that has led to that point: the lack of support and information.

The reality is simple things like putting a schoolbag on a child's back does not always happen for a parent of a child who is autistic. They do not even have a school place half the time. I had to fight very hard for a secondary school place. We imagine when we put our children into school, they will thrive at five years old. As parents of autistic children we are lucky if we get a school place, and if we get a school place, we are lucky if it is in the appropriate school setting. If it is not, it is just an avalanche of pain and regression. When somebody tells you your child is autistic, it is like they take your child from you. Everything you thought is gone. They hit a reset button. Your child is given back to you but everything is gone. The expectations, dreams and what you thought would be is gone. You are on your own journey and it is a lonely journey because nobody is there to help you and nobody understands.

Unfortunately, we are in a situation today where, as parents, we are reliant on our children to teach us what they need because we are learning from them. We do not always have the tools for our children to learn from us. We are dependent on other people to help us. That is through services and schools. We assume our children are going to make friends when they go to school. It can be a simple thing like that. Our children sometimes do not even have the ability to make a friend. That is another worry for us. They are not in the appropriate school setting. We are putting our children into autism classes when principals who choose the teacher to teach our children have received no training on what autism is. How are they supposed to make the right decision on the right person to teach our children when they do not understand themselves? There are little things.

We help our parents when the domiciliary care allowance, DCA, application is rejected. We know that 60% of appeals are passed by the second officer, so what did the first officer do? They did not even look at it. I think of the hours we help parents to put into DCA applications. It is traumatic. They have to put in everything. It is so much information.

It is almost like a counselling session for parents when we take them through the form, because they have to verbalise the reasons they feel they are entitled to DCA. They have to verbalise their children's disability. They are sometimes nearly hearing it for the first time. We come in behind those parents, we listen and we help. We empower them with information and we empower them with support. We let them know that we are there each week and that they can come back. Even if they are not stuck for something for their child but they are feeling low they can come into us.

The reality is that we are so busy trying to help our children and our children's mental health, that too often the parents mental health is forgotten about. I see it all the time. Week in, week out, we see parents, just like Ms Jennings said, who are worrying about the siblings. My children would not even know to put themselves first. They do not even know what that means. They do not expect to be put first. As parents, we always worry whether we are doing enough. We are always worried about getting it right.

The hub has provided so much support. We will open our doors on Thursday for the third year. We have seen more than 160 families come through our doors over that period of time. That includes families who feel empowered, who no longer feel alone and who feel supported. Sometimes, if they are lucky enough, there will be a place in Ms Kenny's social club. They can come and they can meet families. It is an unbelievable service. If we had one of them in every town and in every county, at least parents would feel that they were not alone, that they had this knowledge now and that they had this power. At least they could stand on their own two feet and try to help their child in a little better than they had been able to because they are stronger.