Struggling with DS2 refusing to walk

[Triggles]

DS2 is 4yo and in reception. We live close enough to walk to school, however, he frequently refuses to walk or spends the entire time having to be coaxed, prodded, or pulled along in order to get him to school. When he gets upset or overwhelmed (which seems to be most of the time when walking out and about lately), he throws himself back or down or sits down or lays down and is either in screaming meltdown mode or shutdown mode where he won't even acknowledge that we're there. It's making transportation absolutely a nightmare lately - and then at the end of the journey, he's absolutely beside himself. We drove to and from school during the winter as it was so cold and he doesn't cope well with rain or snow, but it really came to a head the week the car broke down and we had no choice but to walk.

To be fair, I know we COULD drive every day, but the petrol adds up, and the traffic around the school is an absolute nightmare - children (and parents ) running out in front of cars, cars double parking, no parking spots available, trying to get him in and out of the car without him getting run over. Honestly, I am so stressed by the time I'm done with the school run, I have a pounding headache - but then again, same results with walking.

DH and I have been discussing this and have come up with two things that we are considering.

1. Purchasing a bigger pushchair (is it the McClaren Major? or is there another one?) so that we have it available not only for school runs but also for other outings that require walking or walking in stressful situations where he tends to do this.
2. Applying for mobility for DLA (already in receipt of MRC, but he is going to be 5 this summer and we could apply for the mobility part then).

What has everyone else done in this situation, as I'm curious. I really hate the idea of the pushchair, as I want him to get used to walking some, but at the same time, he gets very upset sometimes and I don't want to upset him either. I don't want to be tied to the car all the time if we can help it, but it seems that we're getting that more and more. I just keep bouncing back and forth on this....

Pros? Cons? Thoughts either way?

Hi Triggles i have this problem with DD leaving places and now when trying to give her freedom of walking with her reins and back pack .
One thing that worked for a while was to use both hands , spread your fingers and using fleshy bit inbetween thumb and finger and gently but firmly have childs arms ( inbetween elbow and shoulder ) in fleshy bit and kind of encourage along . I walked to the side using verbal encouragement too .
Other than that am sorry :(
I looked into the Major but don't have the funds and new stroller is not going to last long as DD is tall !
Hope to maybe help . x

i applied for dla mobility when you can , i did as DS joints ache (ASD) when walking i didnt know that when he was your DS age but now hes older he complains of it rather than the meltdowns where he would refuse to walk another step, perhaps see the OT incase this is why, i think if i'd known about them a this stage for school i might have brought the passenger tricicle there was a post on here the other week about a different kind of bike for two cant remember what it was called but something like that, its just not ideal them going into meltdowns just as they go into school is it , those are the days i KNOW im going to get a phone call half way through the day with some problem or the other i just want to get him in there as fast and smothly as possible IYKWIM not him upset or me upset and frustrated cos it rubs off and hes moosy the second he gets there.

spiritsam DS2 is a runner, so we need to have a firm hold on his hand when walking.

Ironic, isn't it? Difficulties with him running off, but can't get him to walk. I can't be the only one that sees this as truly goofy! But there it is. We never know when he's going to bolt.

smileandwave2000 I didn't even consider that it might be painful for him to walk - I wouldn't even know why they would hurt - does ASD do that? He's not good at communicating when he's in pain or not feeling well. It's always been assumed (by us) that it's because he is overwhelmed or overstimulated by sensory stuff or just ASD in general. He isn't able to ride a bicycle - we've tried to teach him but it's simply too much for him right now in terms of coordination and focus. We've been on the waiting list for OT since December, and no sign of actually getting any OT for awhile. So we're rather at a dead end.

Today it was so stressful for all of us that after carrying him for part of the way home, we put him in the pushchair WITH his 1yo brother, as it was the only thing we could do at that point.

I hate to go through the DLA application again, although I was told we could put "no change" on the care part and just fill out the mobility part. We could pay for the pushchair if we needed it, although it would make things a bit tight. But we'd happily do it just to decrease the stress of the twice daily school runs. Of course, then there's the inevitable "tutting" from others about having a school age child in a pushchair. sigh... just going round in circles still....

Hi Triggles sorry my DD is a runner too that's why it did not work for long [grin}
I would say go for the Major , i am stuggling with carrying as have disabled arm and bad joints and would rather looks than more pain . Try DLA too . Sorry not much help . It's all swings and round-a-bouts !
x

Oops sorry about bold again

Sorry to go on about ABA, but this is one area where the ABA tutors saved my sanity by getting my boy to walk for me (we had exactly the same problem as you, he simply refused and wanted to be chauffered even 100 yds down the road to school).

I think you don't even need the ABA tutors themselves, but could try the techniques, as it worked for me too.

a) Insist he walks somewhere when you know you have a bit of time (eg don't necessarily start this on school run)

b) tell him you are going to walk for sweets, or ice cream, or whatever he really finds motivating. Make it a big , exciting thing

c) Once he drops to the floor tantrumming, hold his hand firmly (so he can't hurt self or get too near pavement with head etc) and look away, no eye contact, no words , nothing

d) wait out the tantrum (this is hard, and you may get looks and "tutters" but it's important you show him that he will get absolutely zilch reactions from you until tantrum is over. Think, as you go through this pain, that you don't want him in a pushchair when he's 13.

e) Once the tantrum starts to abate, but only when he has become much, much quieter for a minute or more, say "let's go for swees/ice cream then" and march off happily down the road, holding his hand and giving him eye contact again

f) be prepared to go through the step d) again and again, and keep repeating "let's go and get sweets" when it's over.

g) make sure he gets the the sweets by end of exercise. You HAVE to wait him out, you have to teach him that your will and patience levels will always trump his tantrums. And he has to learn that the only way to get the reward (make sure it's a very motivating one, ice cream always worked for us) is to walk nicely with mum to the shops.

It was slightly helllish to go through at the time (he was just under 4, same age as your boy), but I swear it took only a week and he now walks everywhere quite happily, around town , on the beach , to school etc.

Actually, they call it ABA but it's not that different from something I saw on Supernanny.

We also had this with DS (ASD) but managed to sort it out in about 3 weeks by getting up early (sometimes an hour earlier) and letting him sit/lie/have a tantrum on the ground as long as he liked. DH or I would stand by and when he was ready to continue, we'd go on. Sometimes he'd get to school looking like a pig with all the dirt and we had to explain to the school what we were doing so as not to be reported to SS for neglect, lol. Also sometimes he'd scream so loudly that cars would stop, never mind passers-by :D But after 3 weeks he realised that there was no way to get out of walking, so he gave in. It was a hard time but worth it.

This is pretty much exactly what we've been doing since September when school started. No headway at all. We get this on school runs, out and about, when he's tired, upset, distracted, overstimulated, nervous.... often it's like he can't cope and just falls apart. There is always some level of difficulty with walks, even on good days, most likely due to the ADHD and sensory problems. But because of his comprehension sometimes and speech and language delays, he isn't able to really TELL us what's wrong either - at that point he is literally unable to speak clearly.

we got our maclaren major free from wheelchair services (via OT and HV) for exactly same reason - still needed pushchair for safety but had outgrown a normal one

Agnesdipesto - how old is your DC? We're really struggling with this decision - we're still on waiting list for OT, heaven only knows how long before he's actually seen! I think I'm going to have to call them tomorrow and start becoming more vocal about the long wait.

Triggles your DS sounds like my DD . She has speech and language delays too and i have to make sure she is safe when having these meltdowns and that others won't get caught in the crossfire . I would chase OT , i have started becoming more vocal and it does seem to help .
Agnesdipesto thanks for writing that it's very interesting to know x

sickofsocalledexperts and AllieZ - please don't think I'm putting down what you're saying or anything. We've just reached a point where we've realised it isn't working for whatever reason and we need to find other solutions as DS2 is not coping, and we are not comfortable putting him through further stress and upset when it is not showing any improvement over such a long time. I do appreciate what you are saying, and you are right as those methods are what we generally utilise with varying degrees of success in other circumstances for other behaviours. It just doesn't work with this particular behaviour.

I do agree that we're going to have to chase the OT and get things moving on this. I cannot become a hermit - we have to leave the house for different things, which means he has to be out and about frequently, and sometimes walking is involved. So a decision will have to be made soon.....

Sorry to hear you are all struggling, Triggles. No advice, I'm afraid, but (((hugs))). I've got 2 friends who used maclaren majors, don't know who funded them, but you just do what you have to do.

Finally, some good news from the OT office! I spoke to the Team Administrator today and she has confirmed that we should be getting an appointment to start his OT within the next 2 weeks. She also apologised as she felt the delay had been excessive. So we'll talk to them about this issue when he gets in to see them. Light at the end of the tunnel.....

That's brilliant news :)

Thanks. Yes, I was beginning to think he'd never see the OT at this rate. What a huge relief!

Triggles, you need to find what works for you and DC, that's the most important thing, I din't feel you were putting down what I said. It worked for us but it may not work for you. (Can I ask though: have you been doing it consistently and without giving him absolutely no attention (not even looking at him) when having the tantrum? That's how we did it, we would not speak to him a word and would often turn away (so I could still see him from the corner of my eye) to hammer the message home) until he stood up and came to hold our hand again. However, as I say, it may not work for you. Hope it gets solved soon.

Does ASD cause joint pain??

sorry to hyjack my son often complain's his lets are tired after any amount of walking i always just thought it was due to him not getting enough exercise / being lazy? it never occured it could be to do with the ASD?

leiela - no, ASD does not cause joint pain. ASD is triad of impairments related to communication e tc - not linked to physical symptoms per se though many children with ASD also have phsyical issues like dyspraxia etc (soem dont they are very physically active)

but other conditions can - like hypermobiole joints. is he very flexible?

OP - get a maclaren major on ebay second hand and use that when needed ; while also going on walks to school and back on non school days to train him. use motivators. practice other walks to specifc places with motivator/reinforcer for good walking. use reinforcer every few steps to reward good walking. if it has to be smarties or other food - so be it .

hypermobile - see test to do here
hypermobility.org/beighton.php

God, don't worry Triggles I didn't feel you were putting me down. All autistic kids are so different that no one single program works for every kid. With my boy, there was no problem with hypermobility or hypomobility ( I knew that because he can bounce on the trampoline for hours, and has legs like a shotputter) - with him it was simply wanting to get his own way and go by car, as walking was dull to him. In other words, he was just being a normal wilful toddler, only worse due to the lack of language and autism. That was probably why the behavioural thing worked, as it was a behaviour not a physical problem. Good luck with the OT.

I don't think he's hypermobile. He's all over the place though. He's got (although not official diagnosis yet) ADHD, ASD, speech and language delay, possible dyspraxia, gross motor skill problems, sensory problems. He will do short walks, but any distance to them at all means he gets more and more distressed and distracted until he reaches either meltdown or shutdown, at which point we spend most of the time dealing with the upset and often end up carrying him - which he's not fond of either, to be fair. He will sit in the pushchair at that point (with his 1yo brother LOL), although again he's not thrilled, but he will do it instead of further walking.

Basically, walks with DS2 involve:

• constant hand holding - cannot let go or put guard down for an instant as he is a runner with absolutely NO road sense or concept of safety whatsoever.
• he often starts out the walk fine, then slowly deteriorates to a point where it's impossible to continue
• he only resists starting out on a walk when he is upset and/or tired already
• he doesn't like the sensation of walking on snow or in the rain, although he cannot walk by a puddle without stepping in it and not just "kids like to splash in puddles".. he CANNOT walk by a puddle... it's an impulse thing... if you try to get him to stay away from the puddle, you can actually SEE him struggle with it
• he is distracted by EVERYTHING - leaves (on the ground, in the trees), rocks, branches, flowers, building, the wind, cars, people, animals, postbox, literally everything is a potential for stopping him cold or dragging him off to the side
• he gets upset by loud vehicles - and jumps when one goes by - then is edgy for the rest of the drive, and shows visible panic for the rest of the walk whenever a vehicle goes by
• he MUST switch hands every few minutes. No rhyme or reason to it. Just has the impulse to switch hands with me, and must. Cannot seem to resist it - have tried and again, can see him struggling with it. The more he has to struggle with stuff like that, the more stressed he gets, and the faster the walk deteriorates.
• we must keep a running conversation going with him at all times - meaning we have to count up to 100 over and over again (by 1s, by 2s, by 3s, by 5s, by 10s) or do letter and number games verbally. As soon as it stops, the distractions mount up and things deteriorate.
• he actually seems to enjoy walking when we start out, so I don't think it's lazy or just not wanting to walk (and he is usually literally bouncing all over the place, so I don't think in general he has any aversion to walking)
• we've asked him if he hurts anywhere or what is wrong or whatever way we can manage to rephrase it when he stops walking, but he can't seem to verbalise what the problem specifically is.
• when I take DS2 and DS3 out together, I have to put reins on DS2, as I cannot risk him getting loose and running off when I've got another child in a pushchair with me.
• DS2 has some comprehension problems and cannot verbalise some things as well as the fact that when an incident is over, it is like it is wiped from his head - any attempt to go back and discuss it afterwards is usually useless - and at the time, he is too upset to talk.

We've tried loads of different things, but until we can sort out specifically why this is happening, I don't think we're going to make much improvement. We were told by the paed that the OT will be able to help with sensory issues as well as physical stuff like problems with walking, so we're hoping that will progress a bit soon. However, I'm realistic to realise that this is going to take some time.

I think that's the main reason we're looking at the McClaren Major at this point. Because we need something that will allow us to go out, perhaps DS2 walking and DS3 sitting in the McClaren, and then when DS2 gets too tired or is unable to walk more, we can put DS3 on a buggy board (he's almost 2 and ironically a good walker - although he still tires pretty easily on longer walks) and DS2 in the McClaren for a rest. This way he's not relying on the pushchair or missing out on walking opportunities, but he's also not getting pushed further than he can cope either. And it means I can actually take both children out myself, rather than always having to have DH or a friend/relative along, which otherwise really limits me.

Do I sound completely barking by now? hmmmm.... probably.... DH has said he feels so strongly that this is a good decision that he is happy for us to put together the money to purchase the pushchair ourselves if we can't get it through OT channels. I'm the one dragging my feet... god knows why... maybe because it just feels like such a huge step - a bit of denial perhaps? I don't really know.....

Just wanted to pop in and say hi. Your DS sounds like my DD. She is almost 4, poss ASD. She would a mile and more but attempt to get her to walk and it's almost impossible. The relatives take her out but only in a pushchair. If we try to walk anywhere with her it is a constant battle. She will try to run off, has no sense of danger, can only be taken for a walk when she is on reins and usually needs 2 people. She will drop to the floor and refuse to walk. If we try to continue she will tantrum and bang her head on the concrete floor. If we try to pick her up she kicks and scratches you.

Even in the car she will climb out of her car seat. She doesn't undo it just wriggles out somehow even though it's as tight as we can physically get it. I swear she is contortionist lol!! Anyway, we are considering applying for DLA for her but didn't think any of this stuff would be relevant. Is it?

I really hope you find a way that works for you. Good luck.

Supposed to say she would run a mile.

We are always fighting over him taking the straps off his shoulders in his carseat. He actually is reaching a point where we could be using the seat belt with the booster, but there is NO WAY I'm doing that yet, as he'll unfasten the seat belt over and over. We've discussed getting something to secure the straps (that won't slip up by his neck).. difficult. There are some things on the Krelling (?) site that we have muled over.

We do receive DLA for DS2. These issues are part of the whole picture for his care. If you are looking at DLA for your DD, check the Cerebra website, they have a good guide that you can look through.