get a major for ASD or not?

[thederkinsdame]

I hope some of you who have older children with ASD can advise me. We have DS who's 4 and has HFA/possibly Aspergers. He is very strong-willed and when we go out can be great, but he is a runner and will suddenly go with no warning. Recently his bouts of trying to escape/run off have really stepped up, and he will just dash off. On the rare occassions we have to take him into town, when I am alone I have to cram him in a buggy, as it is impossible to control him and use a cashpoint/pay for goods etc. Otherwise we use reins/little life bag, but frankly these won't keep him safe much longer as he is a big 4YO and outgrowing what we have, leaving aside the comments about him being 'lazy' etc and us 'babying' him from judgy types in the street.

Would you get a Maclaren major? I feel that at present, our world is getting smaller and smaller, as there are few places I want to take him, because the stress of keeping him safe is just too much. However, I feel a bit of a fraud puttin him in one, as he does not have a physical disability IYSWIM. What have you done if your child is a runner with ASD?

DD1 doesn't have ASD, but we have similar issues. She is 4.6 and we finally got our Mac Major from wheelchair services last Friday after a 7 month wait.

It is fantastic. Lightweight, but also crucially, high up and she looks 'right' in it. Before, she was sprawling, so it drew attention. Now she looks comfortable.

No idea whether this would work with you, but I spent a month or so being very strict. DS could walk, but if I said 'stop' and he didn't, he would go immediately in the pram.

The same if I said 'hold my hand'

I did this for some time and he did learn it, but I can't drive, so there was A LOT of opportunity to practise.

Not suggesting this would work for you though as I know all children are different.

wrt using a major though, if you need it you need it. You wouldn't need it if he didn't have a disability would you?

I have a LF ASD runner - but not the answer im afraid.

ds is 9 and runs less these days but still requires 1-1 and hand holding whenever he is out. I did not go down the buggy route but I don't know it was the right decision. ds also has challenging behaviour and my thinking was I needed to be able to handle him while he was still small. To an extent I think this has worked, but it has been very difficult getting to this point. dd is 2 yrs older than ds - I could not have done this had she been younger.

There are pros and cons for and against the buggy. I was probably too anti and made my life harder than it needed to be.

Whatever you decide try not to feel guilty; I honestly don't think there is a right or wrong decision. If you get a buggy you can use it as and when you feel you need it and you certainly wouldn't be a fraud.

Yes, I agree re: the age gap thing. I have 3 under 5, and DD1 (the one with SN) is the eldest, so I have to have a solution for her, because I have two younger children to keep safe, too.

Thanks fo rall your replies.

Lou I'm glad you have your major and that it is working well for DD. Good to hear that it has been a positive thing.

Star (hello, btw!) We have tried everything! He has been like this since he walked (early) so we've had 3 years of constant training, putting him in buggy when he didn't hold hands. We've used various other techniques, which haven't tamed his desire to shoot off, althogh it is very unpredictable - sometimes he'll be great and at other times a complete nightmare. TBH, he is so 'fiddly' that transactions when he's on reins are impossible, as is carrying bags. I have only just got over the shame of him knocking about 12 bottles of vodka off the shelf in Sainsbury's when I decided to brave the reins. Obviously I try to do errands etc when he's in nursery, but there are times when I need to do stuff with him and I feel I can't...

Tibni thank you for your perspective. I had been feeling like this, too, as I worry that he will never 'learn' to control his impulses to run and this is why we have been working so hard with him, but I think recent events are making me see that we have to have a back-up plan.

Lou - that's a very good point, too. DS is an only, but we are thinking of having more, so this is a big concern for us.

LOL, so you recognised me then?

It sounds really tough. I was lucky with ds, but also, because we walked SO much (up to 8 miles a day) from ds being born, I began the training when he was only 15 months and couldn't get far.

I couldn't imagine doing it with him now if I'm honest, because not only would I have to truly leg it, but I'd have to abandon dd.

I have a new added advantage atm too. He is terrified of dogs. I was worried that it might make him run into the road, but actually it just seems to make him keep closer to me.

Unfortunately, my DS was able to move at the speed of light from the off, and has always been very strong-willed and a bit of a daredevil. He tried to jump in a river at the age of 14 months, has waded into the sea in winter, been on the highest climbing frames since he could walk... you get the picture!

I think it is only when you have others that you realise how abnormal it is to have to be soooo alert all the time and keep such tight control.

I walked to my parents' house with my Mum, DD2 and DD3 today (DD1 was in preschool). DD3 was in the buggy. Because of my experiences with DD1, I don't really know what is 'normal' for a 2 year old wrt supervision - I usually use a wrist strap for DD2.

Today, I couldn't find it, so I told DD2 she should hold my hand. We held hands all the way down the main road, and then when we were on the side road, I thought "see what happens". I let her go. She trotted along the pavement beautifully, being a bird, an aeroplane, a horse, a tiger, etc.

It made me want to cry. Because it was like a new discovery. DD1 uses a harness if she is walking, and I have to cling on with all my might, watching every step. DD2 was free but safe. She stopped at each junction (they were little side roads) and looked for cars, it was fantastic.

I get so sad for DD1 that she can't experience that

I know what you mean, Lou. I see this when we are out with friends and their kids. I think they all secretly think I'm very PFB, but they really don't 'get' how full on it is and how you always have to anticipate dangers. I wish I could give DS more freedom. Aside from anything else, I worry that he's not getting enough exercise.

My 4 year old ASD dd2 is still in a buggy, dd1 is 6 and sometimes i still cram her in a buggy. Do whats best for you, keeping you ds safe has to come first and dont take any notice of what other people think. I'm always getting comments when dd2 is in her buggy (like 'look at that big baby'), i'm now growing a thick skin. I have just bought a mountain buggy for dd2, we have a Maclaren Major but i wanted something better for off roading. Luckily dd2 still fits in a buggy with a squeeze.

Up until ds was 8 he was on a wrist strap and when younger he often went in dd2's buggy and she walked he broke about 3 double buggies so we gave up with that idea.Do whatever you think is best if I had had my way I would of had a major but dh was set against it.

Yes. We have one for our large 4 year old with ASD. He's a runner and a roller and also has hypermobility/hypotonia so finds the 1km each way walk to nursery a bit too much, most days, anyhow. It has the added advantage of making it easier to deal with our 6.5 year old, also with ASD, also prone to running/rolling/massive meltdowns.

Just going to elaborate, since I also have the other side of the coin. DS1 was mostly out of his buggy by 2.5 and never used it at all after his 3rd birthday. DS2 was a baby at the time and we didn't want to faff about with an unwieldy double buggy, if we could help it. Unlike DS2, DS1 was extremely active and we felt he really needed the exercise (including that 1km each way walk!) It's not like we could actually physically keep DS1 on his buggy, when we wanted to, anyhow!

So, taking no chances and using reins, we trained DS1 to walk nicely. It meant I spent a lot of time with a screaming DS1 slung over 1 shoulder, pushing the buggy (I bought one with a bar handle, especially!) with my one, occasionally free hand and my belly! I still am frequently to be seen pushing the major with one hand while clamping one of DS1's hands to the other handle to stop us from going around in circles.

Now, I probably could train DS2 to do the school walk if I didn't have DS1 to deal with, but there's no way on Earth I could manage DS1 in meltdown mode, DS2 in sitdown mode, plus various bags and still actually be able to walk the next day.

And, heck, I know plenty of people who never, ever do our almost exact journey to school (or even much, much shorter) without just bundling the kids in the car. They don't even have to deal with what I have to deal with on a daily basis. My DS2 is getting no less exercise than these kids - and has much more fresh air!

I sometimes trot to the shops (halfway to school) with the kids, both on foot, but then there's no time constraints and none of the pressures that send DS1 off on one. Even then, I'm still frazzled when I get home!

I think you should get the buggy. You don't have to use it for every little journey if you don't want to get dependent on it, but I know from experience it can make a huge difference to your stress levels knowing that it is there if you want it.

Ds has had his since he was about 4 and it has meant we can still take him out and about, rather than avoiding places that aren't safe (which would mean everyone missing out). He has needed it less and less as he's got older but it's given us a lot of freedom, especially in school holidays when I've had to deal with him by myself for weeks on end. I'm sure I would have gone stir-crazy without it!

Thank you everyone, for sharing your experiences and giving advice. I think we will get it, just to give us peace of mind and so I can feel that I can go places I couldn't otherwise attempt. On the plus side, our statement has just arrived!