Parents of children with learning disabilities lonely, distressed and under pressure

It can be hard to cope with having a child with a disability. It can be particularly hard on relationships.

A report out today has found that one in three of parents of children with learning disabilities is in a relationship, which would be described in the counselling room as ‘distressed’ (compared to one in four parents in the general population)*. The research also found that they're more likely to feel lonely, have less time for 'date nights' and identify money worries as a strain on their relationship.

The report comes from charities Relate, Relationships Scotland and Mencap, who are calling for better access to short breaks services, improved childcare support for parents of children with a learning disability and targeted relationship support.
The report, Under pressure: the relationships of UK parents who have a child with a learning disability, questioned over 5,000 people, including 280 parents of a child with a learning disability.

Key findings highlighted that top relationship strains include the lack of quality time parents of a child with a learning disability have available for one another. Nearly a quarter (24 per cent) only find time for a date night once a year or less, compared to less than a fifth (17%) of other parents. And hey, let's face it who has the energy for date night anyway?

Finances were also a factor: four in ten (39 per cent) parents of a child with a learning disability identified money worries as a strain on their relationship – compared to 29 per cent of other parents. Again, no surprise. It is extremely hard for both parents to work full-time when one, or more children has a learning or other disability. Then, if the marriage breaks down, money is even more scarce.

Parents of children with learning disabilities lonely distressed under pressure

Mental health under strain

The report says mental health was the second biggest relationship strain, with one in four (24 per cent) identifying this as an issue – more than twice as many as other parents.  In my experience, many, many parents I know need to access psychiatric medication such as anti-depressants. I don't even think it's unusual. It's more unusual to have easy access to talking therapy, even if the whole family.

On top of the relationship issues, more than one in five (22 per cent) parents of a child with a learning disability feel lonely often or all the time – compared to 13 per cent of other parents. One in six parents of children with a learning disability has no close friends. Parents of children with a learning disability are almost twice as likely to feel down, depressed or hopeless often or all the time (27 per cent compared to only 14 per cent of other parents).

I'm not sure why these figures of loneliness and depression would come as any surprise to anyone parent of a disabled child. Friends without children with SEND may fall away, your children may need to go to school by taxi or a drive away so there are no local relationships with other mums. It's one of the reasons there are so many Facebook groups for SEND parents - you need someone to share your experiences with who will a) understand and b) be able to offer advice from experience.

Ramya Kumar, 38 and from Swindon, parent of nine-year-old son Rishi who has autism and a related learning disability said, “Caring for my son has in many ways taken over my life. Caring can sometimes be 24/7 and I’ve felt like, in some ways, I’ve forgotten how to be a wife to my husband. We rarely get to go for meals as a couple and can sometimes feel isolated from society due to the attitudes of other parents to disability. But, we wouldn’t change anything about Rishi. He’s given me the priceless gift of perspective and has made me a better and stronger person."

Ramya also said, “Many of the challenges we face can be solved by having the right support from local authorities and acceptance from the public. Rishi gets respite care for four hours a month. We’re lucky that our local community nurse has been a pillar of strength. Her support has made a huge difference to our lives. Our major worry at the moment is about Rishi’s future and making sure he gets to be fully part of his community - it’s created a great divide in opinion between my husband and I. But nothing can replace the boundless love and joy that Rishi has given us. If we had known about the support available and if it had been there from the start, some of these challenges could have been avoided.”

Some families don't get the support they need though and relationships don't just come under strain, they break down completely. Others can be strengthened by pulling the same way, instead of apart. Like any relationship, it depends on the personalities and the strength of the relationship's foundations to start with. But under this kind of stress, cracks and discord can be amplified.

The Children and Families Act was supposed to look at this kind of thing more closely, as part of putting the family at the centre.  Carer's Assessments, access to short breaks and family therapy should have been easier to access. But with cuts to services biting, the boost to mental health spending as part of Future in Mind not materialising, and the SEND reform's culture change still being on the to-do list, it's no wonder families are feeling under pressure.

Read the whole report here. Add your view below.

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Tania Tirraoro
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Tania Tirraoro

Founder, CEO at Special Needs Jungle
Founder of Special Needs Jungle. Parent of two sons with Asperger Syndrome.
Journalist & author of two novels and a guide to SEN statementing. PR & social media expert. Rare Disease & chronic pain patient advocate.
Tania Tirraoro
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  • Planet Autism

    Why only a learning disability? Many cases of autism do not have an associated learning disability although high-functioning autism spectrum disorder can be categorised as a learning difficulty. I would imagine that those at the higher-functioning end get far less support and parental relationships are in an even worse state as a result.

    • TheJenny

      I agree. My son has high functioning autism and everything has been SUCH a battle. He’s now 16 and I’ve been told all along “he’s so bright/doesn’t need a Statement/ won’t need a special school/not bad enough for TA assistance/doesn’t need speech therapy” … he is now not expected to gain ANY GCSEs in June and I’ve been told last week that they don’t think he’s capable of sitting the exams😐. Stress is ever, ever present.

      • How utterly dreadful. Apply for an ehcp now. There are other ways of getting GCSEs or btec qualifications. He’s been completely failed. Get some solid legal advice from IPSEA or SOSSEN

        • TheJenny

          Tania, we have an EHCP now. And much of the rest of it but the waiting, the battle, the overall mess has meant that he has, over time, missed so much school that now, we are full steam ahead for college in September. His education has been a shambles and has wreaked havoc on our family. More importantly, I have a 16 yr old who, at present, won’t leave the house …his “safe place”.

          • Theresa

            That sounds so much like our daughter but we are receiving help from CAMHS now. She was supposed to start college last year but had a complete meltdown at the beginning as she was overwhelmed by the new environment. Consequently she lost her place (althogh the college booked her a place for this year and have been great). We are now trying to help her leave the house in order to be ready to attend college this year. College and her adviser from the council have suggested asking for an EHCP for her but I’m not sure whether she will get it as she is high functioning too. We had asked about this at school but they felt she wouldn’t get it as she has no physical difficulties. We are now just hoping that this time she will be able to manage college as I don’t know where we will go from here as she struggles so much.