Having a disabled child has nearly bankrupted me – I’ve already spent almost £80K and she’s only five

Now with the dawn of every new month comes the anxiety of worrying whether there will enough funds to cover the mortgage and bills – as well as paying for the support Lexi needs for her Autism.

It's no secret that raising a child is an expensive business, with the average cost from birth to 18 standing at a whopping £231,843.

But if your child has a special educational need or disability, that figure is likely to be up to THREE TIMES more, according to the Disabled Living Foundation.

Research from Scope estimated that disabled people spend, on average, £550 a month on disability-related expenditure, with one in 10 paying over £1,000 extra per month.

To date I’ve spent £76,640 on supporting five-year-old Lexi – and those costs continue to rise.

The additional financial burden comes from paying for private therapies, increased childcare costs, specialist equipment and reduced working hours. It means that many families are facing financial ruin as they attempt to care for their child.

I knew from the moment my daughter was born that something wasn’t right.

She was a fussy baby and everything irritated her; the sun shining in her eyes, lying in her cot, being held, not being held, music, silence, being pushed in her buggy, not being pushed in her buggy.

She screamed constantly – and what a scream it was, so high pitched it could shatter glass.

By the time Lexi was one she wasn’t babbling like my son had done, and at 18 months she had two words: "hiya" and "hot".

She had such spectacular meltdowns that I longed for a typical toddler tantrum.

When she started preschool at age two, things worsened. Lexi found being with other children intolerable.

She couldn’t cope with them being near her, didn’t know how to play and got anxious when spoken to and would lash out or shut down.

Preschool would only allow her to stay if I paid for her to have one-to-one support.

It meant as well as the usual preschool fees, I forked out an additional £90 a week in order for Lexi to attend for nine hours over three days.

She stayed a year, because her needs were too great, but in those 12 months I handed over £3,240 on top of the standard fees.

By the time Lexi was two-and-a-half, her behaviour hadn’t improved and she was barely speaking.

When the word autism was first used I went to the GP, but my concerns were dismissed and I was told it was "typical toddler behaviour".

Knowing this was more that 'toddler behaviour', I sought help from the private sector and paid for an educational psychologist to assess her at preschool, which cost £600.

After three hours it was agreed there was a difference and that the most likely reason was autism. However, I needed a paediatrician to confirm and I hoped I would get that confirmed by the NHS.

I could weep when I think how much I’ve had to shell out

I went back to the GP where I was told the waiting list could be up to three years – by which time Lexi would be at school.

Now aged three, my little one had been asked to leave four different childcare establishments and it became apparent that she needed to get a diagnosis and the support that would bring sooner, so I elected to get the ball rolling privately.

The cost of a private diagnosis was over £4,000, including assessments and reports from a paediatrician, educational psychologist, occupational therapist and speech and language therapist.

We forfeited our family holiday in order to pay, and I took on extra work at night. All the while trying to manage Lexi’s challenging behaviour by day.

After I put Lexi to bed, I worked every evening until at least 11pm.

My husband Paul, 50, reduced his working hours as a sales director so he was able to help out more at home and cover some of the endless meetings we had to attend.

And the costs continued to rise. Everybody involved in Lexi’s care agreed that she needed speech and language therapy as well as occupational therapy.

Natasha's total expenditure to date

  • Lost income for Paul by working reduced hours – £20,000
  • One to one support at preschool – based on £10 per hour for 9 a hours a week for three terms – £3,240
  • Additional childcare costs – based on private childcare at £12 per hour for 16 hours a week for three years – £27,648
  • Additional childcare costs – based on private childcare at £12 per hour for six hours a week for one year – £3456
  • Sleep training – £350
  • Private diagnosis – £4,000
  • Occupational therapy – £3,840
  • Speech and language therapy – £9,360
  • Play therapy – £400
  • Horse riding – £546
  • Swimming lessons – £2,400
  • Additional clothing costs – £1000
  • Sensory equipment such as weighed blanket, sensory seat and calming toys – £400

Total cost to date – £76,640

However, in Lexi’s case, this wasn’t covered by the NHS and the only way she would get the support to learn to communicate effectively was to pay privately.

The average speech and language therapist is £90 a go – and Lexi had weekly sessions for two years.

She has bi-weekly occupational therapy to help with her poor gross and fine motor skills, at a cost of £80.

When play therapy was mentioned I could have cried. However, preschool were worried that she couldn’t take turns or understand simple rules.

Although I tried to help her at home, she wouldn’t accept my instruction and would bite me or throw the game – so I brought in the professionals at a cost of £400.

In order to be a "normal" family, occasionally I paid for a nanny to have Lexi twice a week until she started school.

It meant I could work and be there for our son Zak, who I was conscious of neglecting. Over three years that set us back £27,648.

Then there are the extracurricular activities. It’s important that Lexi can swim, however, she needs one-to-one lessons – at £25 for half an hour, it’s four times the cost of a group class.

It was suggested that Lexi would benefit from a weekly horse riding to strengthen her weak core and calm her down so we go along to a local centre every Sunday – which is a comparative bargain at £10.50.

What is autism?

Autism is a lifelong developmental disability that affects how people perceive the world and interact with others.

Autistic people see, hear and feel the world differently to other people. If you are autistic, you are autistic for life; autism is not an illness or disease and cannot be cure.

Often people feel being autistic is a fundamental aspect of their identity.

Autism is a spectrum condition. All autistic people share certain difficulties, but being autistic will affect them in different ways.

Some autistic people also have learning disabilities, mental health issues or other conditions, meaning people need different levels of support.

All people on the autism spectrum learn and develop. With the right sort of support, all can be helped to live a more fulfilling life of their own choosing.

Information from autism.org.uk.

Like many autistic people, Lexi has sensory integration issues and gets overwhelmed by loud noises or busy places.

Another factor is her skin is incredibly sensitive and her clothes have to be at least a size too big and "soft".

I’ve given away or recycled endless clothes because Lexi can’t wear certain fabrics. She’ll often wear something once before deciding it’s not right – so I can’t return it to the shop.

I’ve lost count of the hundreds of pounds I’ve wasted.

Her socks have to be seamless, so nipping to Asda and buying a packet of 10 pairs for £3 isn’t an option. Her socks cost £5.95 a pair and are provided by a company that specialise in manufacturing clothes for sensory sensitive kids.

Lexi started reception in September and attends a mainstream school with a specialist resource provision for autistic children.

She has knowledgeable and caring teachers who bring out the best in her – but the hours are short at 9am until 3pm.

Many parents use wrap around care, which is available at many primary schools – but that wouldn’t work for an autistic child.

I’ve lost count of the hundreds of pounds I’ve wasted

In order to have two longer working days, I pay somebody privately to pick Lexi up from school twice a week and look after her for three hours – which is £288 a month.

However, despite the monetary stress I know that the investment has been worth it. When I look at Lexi, she’s come such a long way in a relative short time.

Yes, she still needs support to communicate and play, but the meltdowns and aggression are reducing and she’s making friends. Her speech is much clearer and her vocabulary constantly surprises me.

I found out last week that she’d won an achievement award at school and it made my heart sing.

Although I could weep when I think how much I’ve had to shell out, I have to believe I’ve done the right thing by helping her. It’s just come at a huge financial cost.

Natasha previously told how she feels she can't take Lexi to the cinema or even on the train as watching people judge them is too much to bear.

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