Last month Terri O’Neale joined us to talk about the ‘valley of the shadow of death’ as she calls her experience with depression and anxiety. The response to that article, as part of Mental Health Week, was tremendous.
This week she joins us once more, as part of Carers Week, to talk about her daily struggles as both mother and carer for her eight year-old daughter with epilepsy and high-functioning autism.
MN Ealing: Thank you for joining us once again. Your open honesty as you talked about your struggles with depression and panic attacks touched many of our readers. We look forward to hearing what you have to say about life as a carer. Tell us a bit about what it has been like to not only be your daughter’s mother, but also her carer.
Terri: First of all, thank you for having me again. I will try not to be too boring, but this is an important an issue as mental health.
I knew early on that Emily was not developing normally. She did not talk until she was almost three. She did not really play with other children, more like she played alongside of them. Then when she was two and a half, she began having seizures. And our lives changed overnight. I was working at the time, but hated leaving her for fear of another fit. Eventually I quit to stay home with her. But that is not an easy road either.
Her father and I separated. I won’t blame the stress of caring for a child with special needs. That would not be fair or accurate. But I will say that divorce rates are significantly higher for couples with a special needs child. The additional pressures placed upon the relationship will further weaken an unstable foundation. So now I find myself not only a single mother but a full-time carer for a child with special needs.
MN Ealing: So how did you find out that your daughter had epilepsy and autism?
Terri: Well, the epilepsy was pretty obvious. Her first couple of seizures were the classic tonic-clonic ones as they are called. The major ones that we all think of with the loss of consciousness, jerking and foaming at the mouth. But even then, the doctors dismissed them as nothing more than febrile, related to fever and sickness.
After her second one, we were scheduled to go on holiday to America. I asked the doctors, “Won’t I need to cancel our trip?” But they said it would be fine to go ahead as long as she was not ill. She has another seizure while we were on holiday and we had to stay an extra ten days while they got her stabilised. Then the day that we came back she had another fit. Our long journey began from there. Hospitals, tests, four different meds, all of which have side effects, some of them worse than the seizures themselves.
MN Ealing: Wow, that sounds really challenging! What about the autism? How did you find out about that?
Terri: That has been an even longer and harder road to travel than the epilepsy. Like I said, I knew early on that she was not developing like other children. She is the youngest of six and as an experienced mother I just knew. We first took her to the health visitor when she was two and half, because she was not talking. But our concerns were dismissed with…she is the youngest child, you don’t make her talk, she will talk when she is ready. And to some degree that was true. She started talking a few months later and now won’t shut up. But it was just one of the early signs that were missed.
When she went to nursery at three, we had a brilliant community based one and the manager there was very experienced. She noted that things were just not right and did all that she could by bringing in the council’s SENCo (Special Educational Needs Coordinator). The woman spent one hour with Emily and said, “Yes, something is not quite right, but she will probably outgrow it”.
Even when she went to reception, they failed to pick up on the behavioral differences. In fact, that was a horrible experience as it became a blame game. We were concerned because she was being bullied as many special needs children are. We had numerous meetings with the school but they dismissed our concerns…again. Basically they blamed all her behavioral issues on us…she just needed more discipline.
Eventually, we took her out of that school to home educate her. It was only then, when I began to push for answers and we were finally referred to CAMHS (Child and Adolescent Mental Health Services). Even then the diagnosis process took two years, much of that on waiting lists. But they were brilliant and, for the first time, I felt that they really listened to what I had to say. We’ve just got the ‘official’ diagnosis nine months ago though. It was a long drawn out battle and exhausting.
MN Ealing: It sounds like it. So what help is there for families like yours?
Terri: Actually, a lot less than most people think. We have been receiving DLA (Disability Living Allowance) and Carer’s Allowance since we took her out of school. We should have gotten it much sooner, but that is a long story in itself. One thing I will say to other families…apply! The standard for DLA is simple: does this child require more care than would be expected of other children her age? That is all. You don’t even have to have a diagnosis, although it helps. Then once you qualify for DLA, you can apply for Carer’s Allowance. They won’t make you rich or even replace your earnings, but these programmes have given me the opportunity to stay at home and provide the quality care that I know my child needs.
Of course, most people think you get things like respite care and personal budgets. And some people do. But the standard for such a thing is so much higher. After five years, we have just now reached the point that we qualify for even an evaluation for such things. That standard is ‘complex needs’ and much harder to reach.
MN Ealing: So what is your life as a carer like? What is a typical day for you and Emily?
Terri: I wake up tired, because most of her seizures occur at night. I have not gotten a full night’s sleep since Emily started to kick in my womb because just as she got the point we would move her into her own room this journey began. I usually wake up between six and dozen times every night just to check that Emily is breathing. SUDEP (Sudden Unexplained Death in Epilepsy) is rare but real concern. No one is certain what happens but the doctors think that a seizure occurs while someone sleeps and their body simply forgets to breath afterwards. Like I said, it is rare, but my step sister died of it so I have an irrational fear of it.
Because of the autism, seizures and medications, Emily goes to bed and wakes up later than most children her age, another reason that school was difficult for her. I try to use those couple of hours before she wakes up to write, because even though I am grateful for the benefits like DLA and Carer’s Allowance that allow me to be home with her, I don’t like living off of them. I still have the dream that my indie writing will one day give us the freedom to live our lives on our terms.
Emily wakes up somewhere between ten and eleven and the tough part begins. Remember as a parent, what the ‘terrible twos’ were like? That is what my life is like…an intelligent and strong two year old. The never ending energy, climbing on everything, and constant demands. Those same temper tantrums, although in fact they are more like the panic attacks that I experienced with my depression. All combine to require the constant watchful eye of a carer lest they injure themselves or others.
Even when we go to the park. I watch as other parents sit chatting on the bench. That is a luxury that is beyond me. These days I can sit down, but that has been only in the past few months as she has begun to grasp some of the social cues that the rest of us take for granted. But even then I must remain alert. I must watch for signs that she is tiring. Signs that she is being bullied. Or that other parents just don’t get it. Often they are the worst.
MN Ealing: Other parents? But surely they understand what it is like?
Terri: Most people are well-meaning, good even. I know that because my boyfriend has MS (Multiple Sclerosis). He is in a wheel chair and ninety percent of people go out of their way to help us when we are out. But the frustrating thing is that high-functioning autism and epilepsy are what is known as a ‘hidden disabilities.’ By that I mean there are no obvious signs like my partner’s wheel chair or unusual features such as children with Downs Syndrome. When people see Emily, she looks ‘normal.’ So when she bursts into a meltdown (that temper tantrum times one-hundred), they can be quite cruel.
I remember one experience when she was in school. She tried her best then to be like the other children but by the end of the day she was exhausted and on the edge. We had a meltdown when I picked her up…almost every day. This one was pretty bad and I was waiting it out at a bus stop. This woman actually said to me, “You are what is wrong with this country today. Parents have no control of their children!”. At the time, we did not know about the autism, but I said to her, “My child has epilepsy and has seizures in her sleep all night. She wakes up tired. What is your excuse for being a *&^$!?”
Even now that we know about the autism, it is not easy. Emily has a buggy for special needs children. She can walk of course, but tires out easily. It is funny how she can run around the park without stopping for three or four hours, but when we finally leave, she is exhausted and cannot even walk the short distance home. Without that buggy we would be virtually house bound. But the strange looks that we get and sometimes even snide comments like ‘that child is too big for a buggy.’
One thing I would say to people…if you see a child in one of them, there is a reason. No parent spends that kind of money (five hundred pounds) and endures the stares and comments because they or their child is lazy. So instead of being upset that someone with an older child is taking up a space in the buggy bay on the bus, stop and be thankful that you will be able to retire yours soon.
MN Ealing: Your life sounds exhausting. What do you wish could be done to make it easier? What advice would you give other families in your position?
Terri: Of course much has been said about the recent changes to the benefit systems and what government is doing. But that is not what I want to focus upon. I want to talk about what your readers can do to make our lives better.
First of all, as I alluded to with the buggy, the most important thing I wish for was that people would not judge us. The next time you see an older child in a buggy or having a ‘temper tantrum’ instead of blaming the parents, simply pause, give them the benefit of the doubt. Perhaps their child does not have special needs, but just as likely they are. Just as likely that parent is living a life like mine…tired, isolated from other parents and feeling like they and their child are on display for the world. Smile and give thanks that you are not facing those issues.
The second thing I would wish for is that parents would talk to their ‘normal’ (what is that anyway?) children about disability, special needs. That they would help their children to understand others. Emily is out-going and friendly. I know that most people assume that autistic children are quiet and shy, but that is a misconception, especially with higher functioning ones. The trouble is that it is hard for her to maintain friendships because of her behaviours. If adults don’t understand how an eight year old can have a violent temper tantrum just because her sand castle got knocked down, what makes us think that other children can?
In my fantasy world, parents use words like autism, special needs and explain to their children that not everyone is the same, that some people face challenges, find it harder to do certain things. And that is all right. That with patience and understanding those children can make good friends too. That is my dream.
And to those that are walking this path alongside me, hold onto the good moments. And there are plenty of them. Our children understand; they just seem to get what is truly important in life. Sometimes I think that they are the ‘normal’ ones and the rest of us are disabled. The way that they question and challenge societal rules like not talking to strangers on the bus is such a blessing.
You are not as alone as you feel. Reach out to others…There are forums – Mumsnet, for example.
MN Ealing: Thank you once again for your willingness to share so openly with us the challenges that you face. Would you close with a bit about why Carers Week is so important?
Terri: According to the Carers Trust one in ten Brits is a carer. I spoke about caring for my special needs child, but others care for their parents or their partners. Those are equally challenging.
Like I said, my boyfriend has MS. While I am not his carer as such, I understand some of those challenges too. If I get judgemental looks when Emily has a meltdown, we get openly shocked ones every time we hold hands or kiss in public.
The truth is that people with disabilities are just like the rest of us. And those who care for them are both challenged by the additional needs that this presents and blessed to be privileged by their presence. I cannot imagine how different my life would be without Emily…or Chris (my boyfriend). I am humbled to view the world in which we live through a very different set of glasses. Some of it good and some bad, but that is life.
So this week, I encourage everyone to pause and think of someone they know facing the challenges of caring for a disabled child, partner or aging parent. Text or phone them just to say you are thinking of them. And the next time you see an older child in a buggy or having a temper tantrum, remember me and my Emily, and what our lives are like. Talk to your child about those who are different, enable them to form lasting friendships with children like my daughter. Make my dream a reality.
Carers Week is a UK-wide annual awareness campaign which takes place from Monday 9 to Sunday 15 June 2014.
Its aim is to improve the lives of carers and the people they care for.
It does this by raising awareness of carers at a national, regional and local level. Hundreds of organisations and individuals join in each year to make it one of the UK’s most successful awareness campaigns.