By Kulsoom Rizvi, Safeworld Global Correspondent. September 2013.
Photos reproduced with kind permission of the parents ©
Looking at the Human Faces of Disability Statistics
In what is believed to be the biggest step taken in the past in 30 years, the UK government has finally recognized the ongoing battles fought by families of children with disabilities.
The new special educational needs reform, benefits cuts, and welfare reforms have resulted in bringing about a lot of changes for the families of children with disabilities and special needs—some positive and some negative.
Over 770,000 children in the UK are diagnosed with a disability. The statistics, facts, and policies overshadow the human faces behind this number.
Let us go beyond the numbers and hear the stories of four individual families about their journeys in raising a child with a disability or special needs.
Natalia, 6 ½
When Hayley Golenlowski was told that her newborn daughter had Down’s syndrome, the bottom dropped out of her world,
“I went into physical shock and couldn’t speak, shaking all over. I remember thinking we will never go to the sea again. We will never leave the house; people will look and stare, and poke fun.” Hayley adds, “I’m ashamed to say this now, but I just wanted to go home and hug my [older daughter] Mia and just forget about this baby.”
Hayley had a homebirth in Cornwall. Natalia (nicknamed Natty) was born very quickly and very blue.
“The mid-wife immediately gave mouth-to-mouth and the ambulance was called. We knew things weren’t well; we knew something wasn’t right, but we had no idea. You don’t want to ask the question you don’t want to hear the answer to.”
The midwife and paramedics knew what was wrong with Natty, but Hayley didn’t dare ask. The newborn went straight into intensive care, was found to have two holes in her heart, and was struggling to get enough oxygen in her lungs. Five hours were spent trying to save her life.
Hayley used to be a teacher’s assistant, caring for children with additional needs. However, she couldn’t help herself from reverting to a place of stereotypes and outdated information.
“I think I initially blamed my body and myself. All these fears were flooding through my head. I was in deep, deep shock.”
Hayley and her husband Robert were encouraged to visit Natty in her incubator, which was kept in a separate ward. She was very red and bloated.
“A photo was taken of her. I guess they thought she was going to die.”
Hayley and Robert were terrified that Natty wouldn’t make it. Robert asked the midwife how Natty would get breast milk.
“I am a very passionate believer in breast-feeding, and that triggered something in my head, ‘My child isn’t going to have formula; she needs her mother’s milk.’ That woke me up and made me realize that, in fact, this was my child.”
Natty is now six and a half years old, reading and writing well, and improving her speaking skills on a daily basis. A sweaty, happy Natty ran up to say hello, sharing details of her day at school and what she had for snack—ice cream!
“Her first words were cake and then chocolate. Lots of her initial words centered around food. She continued to use signs until age two, and then, as she began to learn how to say certain words, she would drop the sign.”
As a baby, Natty was extremely prone to colds and chest infections. At the age of two, she had a heart surgery to fill the holes. There was a fear that more health problems would surface as she would get older.
“I had these images of her passively sitting in the corner, tongue protruding. I had such ridiculous stereotypes and outdated images.
When you’re pregnant, you’re very anxious and you want to do what’s best, but you’re also in a place of trust. And when the doctor says to you, ‘Your child might have a heart condition, poor eyesight, poor hearing, and increase chance of leukemia and Alzheimer’s,’ you panic.
But that’s not the reality.”
Hayley wanted more than just the factual information. She sought out for family realities—the emotions, the journey, and the struggles. But there was nothing out there.
“I wanted to know that someone else out there had felt what I had felt. I read a book called A Minor Adjustment by Andy Merriman, whose daughter has Down’s syndrome, and it echoed the emotions I had. It was a life-changing read. I would say that this is why I started my blog, Down Side Up.”
Down Side Up is a blog Hayley started two years ago to fill in a void that charities and organizations have not.
“When we were told of the diagnosis, we were given all of these pamphlets at the same breath. It was all too quick. If I could turn back, I wish I just enjoyed Natty as a baby rather than thinking ahead, which is what you naturally do when you find out that you have a child with a disability.
The blog has bits of information you that would never get through a charity. You have the facts and the tips, but I share my personal stories and how I have coped through this journey.”
One particular fear Hayley had was how this new chapter in her life would affect her eldest daughter, Mia.
Mia was excited to have a little sister, waiting anxiously for Natty to finally come home. But she wasn’t able to visit her at the hospital, and when Natty was christened, Mia had to look through a window.
“It makes me emotional saying this now. When I look back at photos, I actually see a sad little two-year-old face.”
Hayley says that additional needs of the siblings of a child with a disability do get overlooked.
“Despite all of this, Mia has grown to be one of the most sensitive, understanding, and thoughtful nine-year-olds I know. She’s very protective of Natalia and they have a relationship like any other siblings would.”
Natty’s disability doesn’t define her, and her mother hopes to be able to help other parents understand how their children with disabilities are individuals and not leaflets.
“We had a fluffy article in The Sun about Natalia’s modeling. This mother had contacted me through the blog saying that she had a three months old baby with downs, and when she saw the article, she cut it up and folded it into her kitchen drawer. Whenever she was having a really bad day, asking herself, ‘Why me, I can’t do it anymore,’ she would take the article out and look at all Natalia has achieved. Something like that stays with you.”
James is like any other 13-year-old boy. He loves his music, playing around with his iPad, and trying out funky hair styles.
He’s quite the intellect his mother Jane Raca says.
But it was clear before he turned eight that James would never speak or walk independently.
Diagnosed with cerebral palsy, autism, severe learning disabilities, and epilepsy, James’ needs were quite extensive. But it took his family over twelve years to fight for those needs to be met.
“I was so shocked and embarrassed by the lack of help we had from this civilized, twenty-first century, ancient democracy.
For many, many years, I felt overwhelmed, exhausted, depressed, and hopeless in the amount of work I had to do. It did make me feel very separated and isolated from other parents, and that hurt.”
Jane, a trained lawyer, left her work to attend to James’ needs and is now campaigning for the rights of children with disabilities. She spent nearly three years writing her book, Standing up for James—a powerful human account of the day-to-day difficulties with which families cope while raising a child with disabilities.
It was also, as Jane describes it, a way to sort out the myriad of emotions jumbled in her head.
“I needed to do it for me. I work in words; words are my way of dealing with my emotions. I kept records of fighting with the council in dealing with James’ full-time residential placement,” she says. “The book is a true record of what had happened to our family, and if you give it to any MP, they will understand what is currently wrong with this system.”
Raca wanted to James to get into a residential school, because she felt her family could not give James the support he needed, not just educationally, but also socially.
Jane explains how the current system has an “artificial divide.”
“We wanted, in 2007, a full-time residential placement for him. We were advised by our barrister that if we did that, we were more likely to lose because the system was predicated on the educational needs of a child and whist you might be able to show that your child has educational needs during term time, it was difficult to prove that your child has educational needs during the school holidays.”
James’ needs during school holidays fall under respite care, not educational needs. For James, education meant learning to use pictures to communicate, walking, and using the toilet—needs which carried on even during the holidays.
But the local council did not view them as such.
In February, the government revealed plans for a new piece of legislation called the Children and Families Bill, which outlines specific changes to be made in 2014to the law for children and young adults with special educational needs (SEN) in England.
The goal of the bill is to piece together the educational, social, and health needs of children with disabilities and special needs. However, according to Jane, who has been campaigning for changes to be made to the bill, the new piece of legislation still lacks an adequate framework to enforce the health and social care services needed for support.
“Because there is no joint plan, it took us years to get James into a full residential school,”
It’s taken countless letters, four written reports each with pages of evidence, three interventions by my MP, three interventions by my counselor, a complaint against the council, and an appeal to get James a full placement.”
James needed one-on-one support all the time and extended hours to continue learning how to walk and communicate. Jane believed that her son needed a full-time residential placement; however, her legal advisors told her that she should only seek a termly placement to begin with, based on James’ educational needs and then negotiate with the local authority over the rest of the year.
It took her five more years to get the full-time service James needed.
“The services he requires are so extensive. He’s got an electric wheelchair and, because he’s quite a lively person, it needs constant repairs. He requires constant monitoring with his splints; he has problems with his toes crossing over so he has toe wedges specially made for him.
He had eight operations last year at once to help strengthen his legs. That’s just a snapshot of James’ needs.”
At times, James is also violent—hitting, screaming, and throwing tantrums. For years, Jane had felt she wasn’t able to support her son properly.
James did finally receive a full 52-week placement, but it wasn’t at home in Birmingham. There weren’t any appropriate schools for him nearby.
James lives three hours away from home in Devon, and it’s still the one thing his mother cannot emotionally come to terms with.
“I’ll never resolve being separated from my son. I would like to be a lot closer to him, but I can’t do that at the moment. If we moved to Devon, there is a chance that the Devon local authority will reopen the whole placement and reassess everything. I just have to accept for the time being that I can’t see him that often, and it’s very very painful.”
The emotional journey for Jane and her family has been tough.
Doctors had reassured her that this wasn’t her fault and nothing could have been done to prevent James’ disabilities. James had severe brain damage at birth, and there was a chance he wouldn’t make it.
“I was terrified—so terrified that I couldn’t look at him it in the eye. I just wanted him to live. If he had died, I would have been utterly devastated.”
Jane avoided indulging herself into research and leaflets explaining James’ diagnosis. The whole situation was too painful, too much of a shock. She just wanted James to come home.
“It’s a bombshell. It absolutely blows you apart for a while. You can’t think straight, and you can neither really go out and research very easily nor have the energy to do it.”
But as Jane flips through photograph albums, she sees a happy James, smiling and hugging his mom. She tried to have a normal childhood with him, and with her other two children as well.
“We tried our best, but even then I knew it wasn’t good enough,” she says.
“When you have a little child and you’re being encouraged to do so much therapy with them because you might be able to get them to talk, you might be able to help them walk, you are not going to spend your time taking your older child to piano lessons and football practice, if you think that time will help your other child.”
James requires a lot of support in order to have a high-quality life, and that support has paid off. Just last week, Jane, for the first time, saw her son pick up a pen and make a mark. Soon, she believes, James will be able to communicate in sentences, although not verbally but with his iPad.
“I had counseling for four years, and it helped expunge all of the bad emotions and I feel like I can now talk about what I felt openly. I feel at peace with myself. It was a very difficult and long road to achieve that. Instead of anger, I have passion.
I look forward with a passion to campaigning on a broader level for other children.”
Every time an advert would pop onto the TV screen, Caroline White would think, “My son will never be represented in these ads.”
Caroline’s son, Sebs, now 5 years old, was diagnosed with Down’s syndrome. When Sebs was born, the family was overwhelmed with excitement and joy on the arrival of the new baby. Caroline, however, could feel nothing but shock.
“You want everything to be perfect when you have your first baby, and I felt it wasn’t at the time,” she says. “I was absolutely devastated—nothing had flagged up during the pregnancy. I didn’t know anything about Downs’. I feared the worst.”
Caroline recalls counting Sebs’ chubby, blue fingers again and again to make sure all five were there. He didn’t look quite the way she had imagined him to be.
“No one directly told us it was Downs’. The pediatrician who reviewed Sebs was really walking around the issue, talking in riddles and medical speech.
What was he avoiding? Why was he scared to tell us the truth?
I don’t think we were handled particularly well in sharing the news.”
Coming home, Caroline was in a really bad shape, feeling like a failure, she says. Watching those countless adverts just added to that feeling of hurt. But further down the line, Caroline began to see beyond Sebs’ disability.
“I realized that Sebs isn’t a list of characteristics or a leaflet. I was bogged down with all the potential things that could be wrong with him, and that’s where I went wrong. Sebs was and is an individual, and what I had failed to see was that he is just a person.”
Sebs is just like any other 5 year-old. He loves his cat, munching on chips, cruising around on his bike, and being quite the charmer.
“Every child is different; one shoe doesn’t fit all. I want Sebs to be treated as normal as possible and be included. Yes, he’s a bit more different but he’s my son, my normal.”
And Sebs was included—in a big way.
Caroline wanted to get the message and awareness of individuality out there to the public. Sebs did a few modeling gigs for JoJo Maman Bebe, and then was invited to be part of a national Christmas TV ad for M&S. Sebs is the first child with Down’s Syndrome to appear in a major UK TV ad campaign for a high-street retailer.
“He absolutely loved it. We got such positive responses. Inclusion is really important, not just for Sebs, but for other children as well.”
Sebs just finished his dual placement going to his special school twice and mainstream school three times a week. Starting next year, he will be attending mainstream school full time, where he will receive one-on-one support for his speech and additional needs.
“I’m very passionate about inclusion in school because Sebs’ friends will grow up and not be afraid of Downs or disabilities as my generation is. He will just be a member of his community.”
But Caroline doesn’t see her son as disabled.
“I find it rather shocking when people refer to him as disabled. He’s normal for me. Sebs, like any child with Downs’, represents their upbringing. His personality, the relationships he forms, and his likes and dislikes reflect his family.
If you take a look at how children with special needs were treated years ago—thrown into institutions with no stimulation or education—things have changed massively, and I have real hope that things will continue to change for the better.”
Ellie, 12 & Toby, 8
Alexa Wilson had to fight for everything that the other parents take for granted.
Alexa has two children, Ellie, 12 and Toby, 8. Ellie was diagnosed with autism at the age of three, while Toby has Fragile X syndrome, similar to autism. The simple things in life like changing nappies and fighting for the right schools became complex.
“We wanted to change from the strapped-on nappies to pull-ups for Toby. In order to do that, we had to fill out an assessment and someone had to come out to see Toby and talk about his toileting. It was such a waste of time and absolutely unnecessary.”
In the end, Alexa was given a form approving the nappy change through NHS; she was required to get it signed by a specific pediatric nurse who no longer existed. After going through many hoops, Toby was finally given pull-ups.
“Everything for us takes more time. You hear parents complaining, ‘Oh there’s only one big comprehensive school around here and a few others here and there’— I don’t have a choice at all.
There’s no school suitable nearby for Ellie. The closest one is a half an hour away.”
Both Toby and Ellie go to the same special school. But Alexa had to fight extra hard to get Toby into the school she thought was best for him.
“People don’t tell you how much you have to fight and fight and fight. It seems like the local authority have never actually met a child with special needs. You can say what school you want your child to go to, but the council will say yes or no.
Where’s the parent’s choice?”
Ellie has a cracking sense of humor, as does Toby, tells Alexa. Despite additional educational needs, both are very bright and social. Toby adores riding, even with his mobility problems. Alexa says that there is a good chance Ellie will be able to live independently. Toby, on the other hand, will need life-long care.
“There is a constant worry of what’s going to happen to him when we’re no longer here to take care of him.
You go through a grieving phase when you first find out about the diagnosis, and you start asking yourself, ‘Will they be able to go to school? Will they graduate at university?’ We do this with Toby a lot, but we have realized we have to get on with it.”
Alexa feels that sometimes she has to justify her children’s behavior.
“There are people who will stand and stare and say, ‘I can’t believe you’re letting your child behave like that.’ I used to get quite worried about this, but now I talk to them,” she says.
“Some people would ask ‘What’s the matter with your child?’ and I would say there’s nothing wrong with them. They are children like your children, and yes they are a bit different but still children.
It’s all down to ignorance.”