The Importance Of Respite For Autism Parents

We_Can_Do_It!

Caring for a child with autism is a labour of love. As parents we are strong because we have to be. However, despite our best intentions, the situation often becomes overwhelming.

S has highly functioning autism with sensory processing disorder. His main problems are social interaction and challenging behaviour. He is also extremely affectionate (especially with me) and as wonderful as that is it can also be problematic.

It’s a myth that autistic children don’t show affection. Autism is a spectrum disorder so while some children will struggle to show affection others (like S) will be incredibly affectionate. ‘That’s good isn’t it’?, some might say. Well, yes, but not when he’s being affectionate towards strangers passing the garden gate or the man who’s turned up to put the bathroom floor down.

S is an extrovert and his behavioural problems are a result of him being overwhelmed. To people ignorant of the facts he can come across as a naughty child but to those who know better – he is autistic.

Autism puts a strain even on the strongest of relationships.Β Parents of autistic children live under constant stress with situations such as melt-downs which can be exhausting for all involved. S is sometimes over his while I am still trying to process witnessing him having totally lost his shit. Yet somehow I have to pull myself together and get on with it. However bad I feel and however hard this particular melt-down has affected me, I have to postpone falling apart until I can do so alone.

The level of stress that parents of autistic children endure can be severe and that can have a long term affect on health. A 2007 study from the University of Wisconsin-Madison found that mothers of teenagers and adults with autism experience chronic stress comparable to combat soldiers.

This is where respite comes in..

Having a support network when you have a child with autism is important.

Most people have family that they can turn to for support but we don’t have any who live close by so our only option was to get S referred for a place at a local children’s disability centre for weekend breaks.

OH and I were not having any quality time for ourselves. At the end of the day we are both too knackered to do anything but watch TV, with me intermittently having to go to settle S back down. We came to realise that in trying so hard to meet his needs we’d been neglecting our own.

The way I saw it was that S had support in place at school and he had us but we had virtually no support as a family. Understanding that we needed help – we took the decision to get him assessed by children’s services for respite. We were accepted and he started at a local centre for children with disabilities a month ago and so far it’s working really well.

Three hours a week doesn’t sound much but it allows me and OH to do our thing knowing that our son is in good hands with people who won’t be fazed if he kicks off or goes on a very LOUD ninja-kicking session, as he is convinced that he is a ninja!

It’s lovely just being with each other because before S, there was an us and we need this time to be those people again, if only for a few hours a week.

As a mother of an autistic child I am always on call, even when he’s at school. I have to be ready for the phone calls to go and comfort him or bring him home. Only yesterday, I had to go and comfort him at school after he’d fallen down. He was unable to continue with his day until I’d comforted him. I held him for as long as he needed me to and then I went home.

Research shows that just one hour of respite a week can make a big difference and in my opinion, parents of autistic children need all the help they can get because autism affects the family as a whole, not just the individual.

Autism is a journey with more ups and downs than a roller-coaster but just as Paul McCartney’s willow tree stood strong against the storms, so shall we.

The willow turns his back on inclement weather;
And if he can do it, we can do it, just me and you.Β 

~Paul McCartney – With a Little Luck

A Bit Of Everything
Advertisements

22 thoughts on “The Importance Of Respite For Autism Parents

  1. This is great. I, Amber, know the struggle of having one child with high functioning Asberger’s. This is so well written and it truly hits the points that most people miss when they are attempting to write about autistic children. They mainly just spew out some statistics and medical facts and don’t really hit on the practical side of what this can be like for the parents.
    This is a great post. I suggest every grandparent, aunt, uncle, friend of the family and etc should read this..

  2. Really good post. My mum is still ‘on call’ for my autistic sister every day she’s at college so even with Tyger being much younger I get what you mean there. I’m glad you’re getting the respite.

    May I ask when your son got his SPD diagnosis (before or after the ASD diagnosis). I’m convinced Tyger has SPD, too, but no health care professionals seem bothered.

    #abitofeverything

    • Sensory processing disorder tends to go hand in hand with autism. I think the majority of children with autism have it in either the under-responsive or the over-responsive form. S is over responsive and it was picked up in his during his ASD assessment but it is obvious that he has it. Experiences of diagnosis vary depending where you are and who you see. We fell lucky because S was seen by a top consultant with many years experience of autism but as a parent you have to be prepared to fight.
      All the best, T X

  3. So pleased you’ve found a solution hon. My husband and I just had a day and night away (his folks were with the kids) for the first time in over six years. It was so great to be a couple again. Sending love & hugs your way. This autism parenting malarkey is no joke xxx

    • Oh I’m glad you got some time away it really makes a difference doesn’t it? Thankfully we have this respite as my parents and OH’s mum are all dead and his dad is 70 in a few months and there is no way he’d cope with S’ behaviour..It would finish him off lol
      Big hugs to you as well lovely. xXx

  4. So glad that you are managing to have a few hours to regroup and refocus. We all need a break from time to time and parenthood is challenging enough without the additional stresses that autism or other additional needs can bring with it as well. Hope that time out is helping you all.

    • Thanks Louise, it really is helping us as a family. We’re less stressed and S loves going because he gets to be himself without having to ‘tone it down’ as he has to for school. X

  5. Fantastic that you’ve been able to access that support and that it’s helping. My daughter also has autism and has just gone full-time at school, and that extra time has allowed me to concentrate a bit more on my 18 month old son. He adores his sister but really misses out attention-wise.

    A little bit of extra support can make such a difference to people’s lives. #abitofeverything

    • Thank you. S has lots of brothers and sisters but they are all grown up so we can give him our full attention. It must be very difficult in your situation but, as you say, school will give you a chance to concentrate on your son. πŸ™‚

  6. This is really well written and so true! I had the opportunity to put my son in respite when he was younger but I didn’t take advantage of it because I was too paranoid about him being with strangers. Looking back on it, it’s something that I should have done for my own sanity but I am glad you are taking advantage of the services provided. We, as parents, need to be at our best and sometimes that means taking a break from our children. Visiting from #abitofeverything

    • Thanks, lovely. I took a long time to make the decision to do this for the same reason…I felt guilty and told OH that if he went and was unhappy, that would be it but he went and we didn’t even have to stay because he went off with the carers happy a a pig in mud. As long as he’s happy, we’re happy and those few hours do make a big difference. πŸ™‚

  7. I agree with you, respite is a vital service. If you dont get the chance to recharge everyone loses out. I think a lot of people assume that school time is your given time out, without understanding as you say how you still need to be available waiting by the phone for the next mini crisis. Thats not relaxing at all.
    Thank you for linking up, Tracey xx #abitofevwrything

  8. It’s brilliant that you have that extra support. It’s sounds like it makes a real difference to you and I’m glad that S has settled in there so well. It must be a huge weight off your mind.

  9. Tracy, such an eliquant insight into yours & OH life with S. I truly admire your and families in the same situations strength when living with such unpredictability day in day out. You stand there with your head held high when I imagine people around you who don’t know S judge you and him and maybe before I knew you, I’m ashamed to say, maybe I was one of these people. In defence, until it’s been explained by the way you have done to me and many more on twitter, its ignorance in the majority and not just plan judgemental. You all face a life ahead of *not knowing* but you have fought long and hard for S to be assessed and continue to fight to receive the help YOU all require.
    Anyway, 3 hours respite, I’m so pleased for you and OH…….right, I’ve worked out what you will be doing for 10 minutes, what gave you got planned for the other 2 hours 50 minutesπŸ˜‰
    Big big loves Tracy
    πŸ˜˜πŸ’—πŸ’›πŸ’™πŸ’œπŸ’šβ€οΈ
    Xxxxxx

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s