Hope For Parents Who Can Not Leave The House With Their Own Children

My children returned to school this week after two weeks Spring break and as I look back at photographs of their time off I realised something very significant: I am now able to take my own children out of the house!

That may seem a strange thing to say to anyone who has never been where I (and thousands of other parents) have been, but I can assure you every school holiday there are parents of autistic children right around the world stuck at home unable to leave the house with their own children.

Back in July 2016 I wrote this post where I quoted families throughout Britain who were trapped at home unable to take their own children out. It wasn’t lazy parenting or just anxious mums or dads, there were very legitimate reasons why taking their autistic child (and siblings) out the safety of their own home was a huge challenge. To summarise the list of reasons included refusal to leave by the child, no awareness of danger, violence and unpredictable behaviour, sensory issues and public comments.

I was one of those parents.

I have two autistic children, one with huge anxiety and another with challenging behaviour and huge sensory needs. For my safety (and theirs) it was best we stayed inside our own bubble of safety at home.

So what changed? Less than two years later and I have photographs of my children at soft play, in shops, swimming and in the park during school holidays. I not only took them both out myself but we all had fun and I even managed to snap some pictures! What others take for granted since birth has taken me almost ten years to achieve…but I got there, and you can too.

So how did I get to where we are now?

1. I worked out my children’s sensory needs and played to them.

I watched them at home and took notes. It was very obvious both my children loved water. They would play happily with water and bubbles and they both loved a bath. That got me thinking about swimming. I called the pool to see when they were quiet and while they were at school I went myself and took pictures of the changing rooms, lockers and showers (I knew they would never use these but they still had to walk past them). We watched YouTube videos of children swimming and I let them try on arm bands and rubber rings.

Then one day I took them swimming. The changing and drying was, and still is, a bit challenging but they love being in the water. It was worth it. Finally we had one place I could take them!

2. I took account of their need for routine and worked around this.

My children do not cope with routine changes. However that meant I could not leave the house with them so something needed to change. I knew there were some parts to the day that were unmovable like bath time and meal times. We never go out after dinner as I know how anxious and distressed my son gets if he does not have a bath at 6pm. He is more amicable and open to change after breakfast so this is when I usually head out now. It’s what works for us and that’s fine.

3. I do the activity and then bring them back home.

First bowling then home. First library then home. They needed to learn to trust me and they needed to know they would always be brought back to their safe place. There was no sneaking into the supermarket while I had them out or popping into a friend’s house on the way home. Short trips keep their anxiety (and mine) much lower and gives them time to process where we have been and wind down from that. One thing at a time is a motto that works very well for us all.

4.iPads come too.

For my twins, and many other autistic children, technology is much more than just a solitary chill out activity. My non verbal son uses photographs on his iPad to communicate and they both use their tablets to zone out when things get too much. If that means they play a game on their tablet and stay sitting on a seat while the other child takes a turn at bowling then I am delighted. Having their iPad helps the transition, minimises the sensory overload and brings them comfort. If that’s what it takes to get out the house then so be it.

5. I involve the children and instantly reward them.

Good old fashioned bribery got us out the house! I remember taking my screaming son one day to the supermarket. He was anxious and annoyed I was taking him out the house but I knew the benefits to him would out-way his anxiety. He was safe and with me and I was monitoring his stress levels continually. I took him in for bananas and right back out again. On the drive home he ate a banana while flapping with excitement. Now he associates the supermarket with food (instant gratification) and I can take him in with me for short periods provided he gets something to eat in the car coming home. There is no wandering aisles stressing him and I take him at times the shop is quieter to minimise waiting. It works. There is one supermarket near me that he never ever wants food though and that’s because they have another massive motivator for him: a lift! He knows if he stays with me while I pick up milk he can watch the lift for a minute before home. It’s mutual benefits really. With my daughter a promise of a magazine or other small treat had the same effect.

They both now see so much benefit to leaving the house that on occasions they even suggest going places before I do!

It took time and patience. I needed to take a risk and do it. It involved planning, risk assessment and sometimes having another adult with me, but we got there.

Like so many thousands of parents of autistic children I found myself staying home all day everyday because my children refused to leave the house, their lack of danger awareness scared me, their sensory issues were so high and I was worried about what people would say.

My children still have no awareness of danger. They still (and always will) have autism. They still have high sensory needs and I still get comments and stares from the public.

The difference is now we just go out and have fun anyway!

It wasn’t easy. It took time and patience. Today I can leave the house with both my autistic children on my own. I am proud of myself but I am ever prouder of both of them.

If you don’t feel you can leave the house with your autistic child can I tell you just one thing: There is hope.

It is most definitely worth it. You need out and the world needs to see both you and your amazing autistic children.

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.

 

 

If you burst my bubble I will cry

So it’s the summer holidays here and all the schools are off. Except my children are still going to nursery as usual. They need their routine, I need the break. And it keeps all our sanity intact.

But other than nursery we are staying away from people and places as much as possible. We haven’t been swimming, or soft play or to any of our usual places much (unless they are autism related) since the schools broke up. Everywhere is busy, noisy, and full of ‘normal’ children. The kids can’t cope with the noise or the amount of people and I can’t cope with my little bubble of life being burst by seeing ‘normal’ children and families or else I cry.

Seeing children climbing soft play equipment and not chewing the wire safety surround. Seeing all the children in church sing songs on the stage and doing all the actions without thought. Watching children in parks on see-saws and roundabouts laughing and playing with friends. It is all too much of a contrast to the life my family is leading and it bursts my little bubble and makes me cry. So for now, the four of us just get on with appointments, nursery, family and playing in the garden. And attending things that are special needs specific only. It’s all any of us can cope with so it is as it is.

If I take my kids to soft play one refuses to ever go on the equipment and instead sits at the table with mum and dad watching all the others. She can’t climb or crawl and is frightened of other kids. Add the fact she hates walking without shoes on due to her sensory preferences and you can pretty much forget soft play. The other can climb but has no awareness of other kids so pushes them out his way, bites them or climbs over them. Then he forms a circuit on the equipment and simply repeats the same circle over and over and over and over, only stopping to chew the wire safety surround, stare into space for minutes at a time or flap his hands and arms. He has no interest in the other children and neither looks at them nor cares what they are doing. If they block him he squeals at them until they move. He sticks out like a sore thumb. He gets called names, laughed at, picked on and pushed. Young children bursting my bubble and making me cry. So the only soft play we go to now is an autism group one. Even there he is different. But so are all the other kids. And most of the other kids have little interest in what he is doing. And all the parents think it is there child when a tannoy says one of the children is running around naked!

So the only non-autistic place we go to every week is church. And right now church is very very hard. They keep bursting my bubble and making me cry. They don’t mean to but the older my children get the more obvious their disabilities have become. Both my children should have moved on from creche to sunday school 18 months ago but both are still in creche with the babies. In Sunday school you sit down and listen to stories, you do crafts and play games and sing songs. Isaac can not talk or sing, or play games or hold a pencil, or follow instructions, or sit down long enough to hear a story. So Sunday school is totally unsuitable. Naomi says the singing is too loud it hurts her ears, she refuses to talk or join in games and is highly anxious and upset all the time. And she isn’t toilet trained. But the other children in the church keep growing up and moving on to Sunday school and my bubble keeps bursting! Two weeks ago all the sunday school children were up on the stage at church singing songs and doing actions and praising God. Children a year and a half younger than my twins singing to a crowd of almost 200 people, happy and excited to be showing what they have been practicing for weeks. I was so glad that Isaac was having a very bad day (in fact a very bad weekend if truth be told) and we could get our bags and go home. My bubble was well and truly burst that morning. I just could not pretend my children were normal any more. They should have been up on that stage with the other children. But I don’t know if either of them ever will.

It is exactly the same when we go to parks. Isaac only wants to find a bush to run along side and look at out the corner of his eyes. And Naomi only goes on the swing. The baby one at that. She is afraid to go on a seesaw, gets dizzy on a roundabout, thinks slides are too high and isn’t able to climb on anything. So pretty pointless taking her to the park then! And if the other children run about she thinks they will knock her over or bully her. Meanwhile her brother has escaped somewhere. No, the garden is a much safer place to be!

Being a parent of special needs children is very isolating at times. Even more so when everywhere is noisy and busy and there are queues wherever you go. But one advantage of doing things with just the four of us is that I can let my children be who they are without people staring, or children laughing at them, or others complaining. They are accepted and loved and made to feel special for what they can do and not excluded for what they can’t do. They need to be in that bubble at times too. Because sadly they will be reminded of their disabilities all too often from the world. For my daughter who has high anxiety and low self esteem already spending a summer in a bubble surrounded by only family, friends, or other special needs families will do her far more good than harm. She needs to hear encouragement, friendly voices, cheering, laughter, love and support. Her mainstream nursery provide this, creche at church provides this and family and friends give her this. But busy soft plays and parks and sunday schools full of children all out of nappies and running around just make her feel inadequate and unable. It bursts her bubble and makes her cry.

And as for Isaac, as long as he gets to run alongside a hedge or fence back and forth as often as he wants, as long as he gets fed often, has peppa pig to watch and lots of plastic toy food to chew on he will be fine. He has no concept of holidays anyway and is happy with his shoes and socks off all day and the nursery bus coming as usual every morning. His world is simple. He isn’t aware he is different. He just needs his routine like any other day. Don’t burst his bubble by saying it is the holidays and nursery is off. You will only make him cry.

So we’re staying in our wee autism bubble for now. Hallelujah for nursery through the summer. What was that? Summer holidays finish in 6 weeks and my boys starts school? No!!! What did I tell you…don’t burst my bubble or I will cry!

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