6 easy ways to help a family with a special needs child

By Alive & Well


Parents and siblings of special needs children know this all too well – in one sense it’s a gift, and in another it’s a great challenge.

When one of my sons was diagnosed with an Autism Spectrum Disorder, in many ways it was a relief to have an explanation for his withdrawn play and communication challenges, and our experience with him has been incredibly positive on a number of levels. However, I went through many periods of feeling frustrated and hopeless, and it was in those times that I relied on the support of others to help me through.

My husband and I are university sweethearts and had been each other’s best friend for more than 17 years by the time our son’s diagnosis came along, so we have a very strong foundation – but at the same time, we don’t take that for granted. We are acutely aware of the fact that fewer marriages survive once a special needs child comes into the picture[1], and in my research as a Masters of Wellness student, I’ve also discovered that:

  • Parents with ‘typically developing’ children say they have had a very positive impact on their lives, whereas those with children who have developmental challenges consistently say they have had a negative impact – and parents of children with Autism report the highest level of negative impact[2]
  • Children with Autism are significantly more likely to have problems accessing care, even compared to children with other special needs such as cancer or Down Syndrome – and their families face greater financial, employment and time burdens[3][4]
  • Parents of children with Autism are particularly at risk of serious psychological distress[5] and poorer health[6].

Credit: Simon HowdenThey’re tough facts to hear, no doubt about it. It’s true that, sometimes, the tough times can make you stronger, but what does it mean in day-to-day life?

In many cases, it means that families with children with special needs feel very isolated and unsupported. They feel they can’t go out because the world is not ‘safe’ or sympathetic for their child, and they can’t have friends over because it may be difficult or embarrassing when their special needs child behaves in a way that might be considered ‘inappropriate’.

For me, it also meant learning to ask for help – something that didn’t come easily and is another topic in itself!

Sound like a rock and a hard place? The good news is that a supportive circle of family and friends can make a real difference. Every time I receive a newspaper clip from one of my sisters or a friend, I feel like they’ve got my back and I know they’re willing to help. I am so grateful for that.

So what can you do?

Whether you need help, or want to help, here are some simple, supportive ideas about things to ask for / do:

 

  1. Cook a meal for the family every now and then, or make it a regular occasion (eg. once a fortnight/month). Make sure you get advice on food intolerances from the parents, so your help is completely supportive of whatever nutritional approach they have adopted
  2. Invite the other children out to a movie or day at the beach or walk in the forest or a football game – whatever might interest them
  3. Offer to babysit once a month (for example) so the parents can have some much needed time off, without having to find or pay for a babysitter
  4. Set up a good time to phone each week and show you care – the gift of being listened to is so precious
  5. Send a loving thought, inspiring quote or TED.com talk via text message or email – this can be a great little booster
  6. Send helpful information – be on the lookout for news articles that are relevant to the special needs child’s situation and send them on. Even if they’ve seen the information already, it’s great to know that you’re looking out for them. In my case, I never make time to read the newspaper but my sisters and one of my friends, who often do, will send on anything they see that’s relevant to Autism Spectrum Disorders or healthy wholefood eating, and I am very appreciative of this.

What else can friends and family do? What have you tried?  What skills do you have that can be put to good use? Or, what would help you?

[1] Hartley SL, Barker ET, Seltzer MM, Floyd F, Greenberg J, Orsmond G, Bolt D, 2010, The relative risk and timing of divorce in families of children with an autism spectrum disorder, Journal of Family Psychology, Aug; 24 (4): 449-57.

[2] Bostrom P, Broberg M, Hwang CP, 2010, Different, difficult or distinct? Mothers’ and fathers’ perceptions of temperament in children with and without intellectual disabilities, Journal of Intellectual Disabilities Res, Sep; 54 (9): 806-19.

[3] Kogan MD, Strickland BB, Blumberg SJ, Singh GK, Perrin JM, van Dyck PC, 2008, A national profile of the health care experiences and family impact on autism spectrum disorder among children in the United States 2005-2006, Pediatrics, Dec; 122 (6): e1149-58.

[4] O’Brien I, Duffy A, Nicholl H, 2009, Impact of childhood chronic illnesses on siblings: a literature review, British Journal of Nursing, Dec: 18 (22): 1358, 1360-5.

[5] Bromley J, Hare DJ, Davison K, Emerson E, 2004, Mothers supporting children with autistic spectrum disorders: social support, mental health status and satisfaction with services, Autism, Dec; 8 (4): 409-23.

[6] Oelofsen N, Richardson P, 2006, Sense of coherence and parenting stress in mothers and fathers of preschool children with developmental disability, Journal of Intellectual Developmental Disability, Mar; 31 (1): 1-12.