The parents who can not leave the house with their own children

 

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I only had one of my children with me tonight for a simple trip to the store for bread. My pulse was racing, my eyes darting about and my body sweating…all before I had even got him out the car! My son has autism. He does not respond to his name, has no awareness of danger and experiences sensory overload. He is unable to speak. Taking him out of the safety of our own home is dangerous, difficult and demanding! He happens to have a twin sister who also has autism and despite the fact I am a confident, independent person I really struggle to leave the house with my own children.
Thousands of parents throughout the country are in the same position.

Can you imagine what it must be like to not be able to leave the house with your own children?

Here are the six top reasons people gave me for feeling unable to go out with their child or children with autism:

1. Refusal.
Angela from Lerwick put it like this : “At the moment I’m struggling to get my 3 year old out of the bedroom let alone anywhere else. He’s been in the room for 3 days now.”
Lisa from Hartlepool told me, “(my child with autism) won’t walk far before lying on the ground and refusing to move.”
Another mum wanted to remain anonymous but told me, “I sometimes have to wrestle him just to get him in and out the car.”

2. No sense of danger
Susan from Leamington Spa said, “I have three kids, two with autism, all going in different directions with no sense of danger!
Katie from Leeds agrees, “My asd child needs my full attention and I need to be running after her etc for her own safety constantly
Danielle, also from Leeds told me, “I struggle at times because I have to risk assess every place we go..”
Michelle, from Lanarkshire in Scotland has a similar problem: “I struggle sometimes with my eldest (8) who has ADHD. She rushes everywhere and often runs off.”

3. Aggressive or violent behaviour
Vicki, from London put it like this,”I find it hard to take Sophie out due to her anxiety & behaviour. She lashes out, screams, hums, kicks and generally anything she can to make our time out together pretty stressful.
Some parents are so upset at their child’s behaviour they wanted to remain anonymous. One told me: “I struggle as he is getting bigger and stronger his behaviour is getting worse and more violent. He attacks me as well when i drive. I am frightened sometimes and also the way people stare at you as well makes me feel uncomfortable as though I’m a terrible mother.”
Shirley, from Glasgow said, “Every outing is a struggle with Blake… his mood swings..his impulsiveness and his temper… I don’t stress about it any longer and I just deal with the situations as they arise and if possible avoid certain situations too.”

4. Sensory issues
One mum shared with me,”My 3 year old needs headphones and music nowadays because he’s become so sensitive to the outside its all too much for him.”
Another, “(my son) has such sensory issues he can’t walk and so I have to carry or push him in his special needs buggy.
Sarah from Warwickshire shared with me about her daughter, “She suffers anxiety and freezes and shuts down when over whelmed.
Nadia from Oxford has a pre school child with autism and told me,”My nearly 4 year old son struggles to be anywhere busy/noisy.”
Melanie, who lives in London shared, “I have two children with autism, I struggle to get my six year old out at all , we use ear defenders but she will still ask to go home.
Stacey from Glasgow know this too, ” I over think when taking zack out and about especially alone because when we go places his sensory issues become x10 and he gets obsessive over silly little things and his climbing is wild people look at me like I don’t know what I’m doing with an out of control toddler – if I did every little thing expected of me and him from others we may as well never leave the house.

5. Having siblings as well as a child or children with autism
Sonya, from Norfolk is really struggling, “I have a 9yr old child with autism and a 7yr old being assessed for asd/adhd and a crazy two yr old. I won’t take all three out because it’s not safe and once my eldest has a meltdown he takes all my attention leaving the other two vulnerable.”
Victoria, from Leeds, and mum to twins said, “I find it very hard as both children want or need my attention. For Joe to enjoy outings I need to put a lot of effort into encouraging him to take notice and prompt him. But his twin sister equally deserves my attention and excitement too! Neither child understands that and I feel we rush the outing and miss out on things that we would have enjoyed.”
Katie, also from Leeds, completely agrees, “Yes it is impossible. I have 2 children, 5 year old asd and adhd and a 2 year old. My asd child needs my full attention and I need to be running after her etc for her own safety constantly, which would leave my 2 year old alone and unable to keep up and I can’t carry her and run after my oldest. So completely impossible.”

6. Public comments and stares
Jess, from Nuneaton, told me some of her experience, “Its not really the behaviour that i struggle with though…its more all the people around me. A lot of times I get people tutting or telling me to calm him down. He’s a tall boy too and we got a lot of comments about him being in a stroller. And of course im just “giving in to him” when i give him my phone as a distraction tool.”
Another carer, who wanted me to keep her identity hidden told me, “When I take him out, I’m not in control of the situation and it panics me. He will not listen to me, run off, or stim either by flapping or humming. I feel like everyone is looking at me, judging us both.”
Shelley, from Somerset, says, “I struggle with the looks, tuts and opinions of others when my son is finding it hard being out. I accept how to deal with him when he’s having a meltdown, it’s not easy but it’s what we are faced with, it’s the judgement of others I find hard.”
Wendy from the South East coast said it caused problems on her recent holiday, “I have 3 children with autism . I get fed up with the looks the tuts. We had to cancel our camping holiday when they found out the kids had autism.”
Linsey from Lanarkshire concludes with, “the way people stare at you as well makes me feel uncomfortable as though I’m a terrible mother.”
Going out with your own children is something most families take for granted.

So how does this impact families faced with autism?

Everyday I find myself more housebound” one carer said.
I rarely go anywhere with them both on my own“, Kirsty, Leeds
Over the past couple of years it has sometimes been made so difficult that we are housebound unless someone is with us.” Kayleigh, Shropshire
Everything needs to be planned to the minutest detail“, Sarah, Warwickshire
Everyday it’s easier to find an excuse to stay at home.” Anon.

This summer please remember the families of children with autism who for various reasons feel they can not leave the house with their own children.

I am one of them.

 

 

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26 thoughts on “The parents who can not leave the house with their own children

  1. I adore Faithmummy.wordpress.com, yet another excellent post that sums up our lives. At the moment Whirlwind is still struggling with anxiety/EBSR (emotionally based school refusal) so we are virtually shut-in, even at the best of times there’s only a handful of places I feel confident or safe taking him 😢. Shared on my FB page xx

    Liked by 1 person

  2. This is me to .i have a 3 year old who copies my daughter who has triple x syndrome with many autism traits the professionals refuse to diagnose her as she already has a label even tho asd is often comorbid with triple x going out is so scarey im a nervous wreck .the looks judgements and the meltdowns are really hard and being safe is impossible

    Liked by 1 person

  3. All so true. Six years down the line from diagnosis, we go out infrequently. When our girl was younger, it was very isolating to not be able to go to the toddler groups, and it made it very difficult to keep friendships going. We make an effort when we feel the time is right, and with much preparation, but we always have a Plan B and we just acknowledge that we most probably can’t stay out for a long time even if we do make it out of the door. We would love to do social things like eat out in restaurants, go to the school summer fair, just drop in on a carnival if the weather is nice, but none of this is possible. It’s a different life from the one we thought we would have, but we just do what we can when we can. It’s important to keep talking about this so that others without these issues can begin to understand though x

    Liked by 1 person

  4. keep blogging miriam and educating the people who do not know what autism is like to live wth although you all love your children very much and want to share as much as you can with them it is very difficult at times xx

    Liked by 1 person

  5. Thank you for posting this Miriam …. I too used to seriously restrict what we did especially as when I first moved to Scotland I could not drive.

    3 children with undiagnosed ASD + 1 pushchair + bags of shopping on a bus = not going to happen.

    Like

  6. Our life especially school holidays just been summed up in this blog. So many people don’t understand, hopefully they will if they read this and realise I don’t cancel for no reason, I cancel stuff because of all the above xx

    Liked by 1 person

  7. The only reason I can take Tayla anywhere is because I have a Pushchair she sits in for Safety due to her running, and that she LOVES her iPad. A few snacks & water and we’re usually good for about an hour. If she was out walking and no iPad it couldn’t and wouldn’t EVER happen.

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  8. There are plenty of times I’ve had to stay home days in and out. We says stay home…I think twice and will more than likely stay home rather than chance it. Some days it’s a job, a real job to go out.

    Liked by 1 person

  9. I have a 8 yr old with adhd / type 1 diabetes and a 11yr old with asd also a 13yr old I find outing very difficult as my child with adhd runs mad shouting and screaming the 1 with asd makes loud noises and can seem very badly behaved the 13 yr old cannot cope with this as I’m under so much pressure which starts siblings fights which turn into tantrums tears and meltdowns to add to the pressure we have people looking at us as if we are a very dysfunctional family my children are all so very loving caring n their own special ways but outing are so overwhelming for us all its so much easier to stay at home 😢

    Like

  10. My son had no awareness of danger and was a rapid runner, a bad combination. He

    wouldn’t wear reins, I used to loosely hold onto his hood to prevent his dash for freedom.
    My twin daughters were of the used to lay on the floor/ pavement and do the well practiced wail and flail routine.
    With regard to the sensory issues, my two girls don’t like other people making any unexpected noise .yet they like their choice music on really loud, just don’t like anyone else to put music on.
    I think the reason they don’t like it is because they have no control on what songs, in what order will gnhbe played,and how loud and long it will Be.
    If I give them enough warning they are much better. It’s the unexpected suddenness that bothers them most.
    In our house, we call that an unexpected item in the bagging area.
    Going out sounds difficult for you, the stress about getting everyone ready and out the door is a precarious challenge, you deserve chocolate and wine once the mission is complete.

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  11. I don’t have a child with any of these problems but I salute you all after reading this! I know if I did have a child with asd then I would just have had to cope (like you do) but I now see it from your point of view – so, thank you! You should all be so proud of yourselves for doing whatever it takes to look after your children and keeping them safe. You’re wonderful – never forget that!

    Liked by 1 person

  12. I hear your pain faithmummy. I have 4 kids. 1 is autistic 1 with downs syndrome. Ages from 9 7 4 and 2. Handful anyway but with the additional fear of running off or meltdowns it can make things stressful. But it needn’t be the end. There are always people you can seek advice from and get practical support from. You just need to find them…doesn’t mean everything is hunkydory but certainly makes a big difference. I dont know what help you have had to date but try again. look somewhere else. Contact NAS and other support networks. Find out how others cope in these situations. People do. For your sake. For your children’s sakes.

    Its hard but it doesn’t need to be impossible. .. best of luck x

    Liked by 1 person

  13. I have four children and there is only a five year gap between the oldest and the youngest. When they were little I did go out with them but it was exhausting and at times stressful. Often it was easier to stay at home. Having support is so important – an extra pair of hands on a trip out, or someone taking your other kids out for a fun trip while you have some one to one time with your other child at home can make a huge difference. When I was pregnant with the twins (my youngest children) another twin mum advised me that if someone offered to help then I should accept by asking them how they would be able to help me. It was hard to do…but it meant that I got lots of specfic practical help at a time when I really needed it.
    I think it must be really tough to face the summer holidays if you can’t get out – I hope you have some help this summer. #spectrumsunday

    Liked by 1 person

  14. Hi, I have just found your blog, and cannot stop reading!! It is so wonderful to find something & someone that is so wonderfully honest. I am a Mommy to a beautiful almost 5 year old daughter, she has asd, moderate global development impairment & hypermobility. As a family we have really started to struggle to go places now, I have a son who’s almost 12 with no additional needs. Our daughter has just started to show quite challenging behaviour when we go out and her sleep pattern is all over the place. I’m not particularly looking forward to the summer holidays & it’s comforting to read I’m not on my own. So grateful I’ve found your blog xxx

    Liked by 1 person

  15. This broke my heart. I find taking O places on my own is getting easier as he is getting older and I’m getting to know what will and wont work for him, but we still plan everything. Even popping to post a letter at the end of the road is difficult sometimes. Sending much AutismMama love

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  16. My son has no sense of danger and we’ve had a few ‘near misses’ in his 7 years. It doesn’t help that I am trying to teach him how to use the crossings properly outside the school but parents keep crossing when the red man is on. As if life isn’t difficult enough for the autism parent, we have to deal with selfish people who are setting a bad example to their own children and to everyone else. #SpectrumSunday

    Liked by 1 person

  17. It is quite comforting to know I’m not alone. Trips out are getting easier but I very rarely take them anywhere if James isn’t with me. I worry too much about what might happen. It is going to be even harder soon as Kinley is starting to refuse his pushchair. Not enough hands to keep them all close to me. Thanks for linking up to #spectrumsunday lovely, hope you join me again this week xx

    Liked by 1 person

  18. Hi I found your Blog via Family Fund I too wrote Blogs for them. I can completely relate to this post. It is impossible for me to take my 2 children (4 and 16 months) out into public on my own. I have attempted this and my 4 year old daughter has had sensory overloads and refused to move off the path and ran around our local library screaming. She has no sense of danger and will attempt to run into roads. It’s been very difficult for me to cope with as I’m the type of person who likes to be out and about and I’m an outdoors person. If I do take the children out we need to be accompanied for support.

    Liked by 1 person

  19. One of the reasons I am so pleased I started blogging is that it made me more aware of things like autism and any family who might be that little bit different. We all really anyway. Thanks for offering your support to others and telling it like it is.

    Liked by 1 person

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