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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

larger buggy or reigns??

23 replies

kimbles1984 · 08/05/2010 11:01

hi, my son aged 3.8 years has a language delay and unusual behaviours which he going to be assesed for.

my problem is that now he is too big for his buggy going out is a nightmare, he is fine on short journeys such as walking to nursery but not so good walking back as he is tired, on the way back he screams if he isnt allowed to walk home along the kerbs which is quite dangerous, he also runs off and lies down in the road and just cries and complains the whole way... any walks longer than the distance to his nursery are impossible, he will just go all floppy and refuse to move...

it would be great if he could fit comfortably in his pram but he cant, so i was thinking of getting him some reigns but that wont help when he refuses to walk, but im not sure about a SN pram as then it would be obvious to everyone, especially at nursery that he is different, i just dont know what alternative there is though. we dont drive.

would you just get a buggy or keep trying to make him walk?? TIA

OP posts:

thederkinsdame · 08/05/2010 12:04

We've got an ordinary Maclaren and DS (almost 4 but very big for age) still fits in it (a bit squashy, but it works!)

We also have reins and a Little Life bag - the latter is good as it straps across the chest, so it gives deep pressure as well and DS likes that it calms him. It has a rein- like lead at the back so you can keep hold of him. It's a bit less obvious than reins IYSWIM.

Our DS han't got the dexterity to undo the chest strap, but I do know some older kids who can undo the strap and take the bag off, so that's something to be aware of.

TBH if you need the Maclaren major, get one and don't worry about what everyone else thinks - keeping your child safe has to be your priority.

HTH a little

5inthebed · 08/05/2010 14:10

I would get a SN buggy. If you speak to your HV/GP they can refer you to wheelchair services and you'd get a Mac Major for free.

We have one for DS2, he does look more obvious when he is in it, but the alternative is more stressful than a few people looking at him funny.

If you live in the NE, I could lend you mine as I'm not using it ATM.

ouryve · 08/05/2010 14:24

We use a SN buggy for longer journeys and reins for shorter ones or trips where the buggy would cause more problems than it solved because of accessibility problems.

Original poster

kimbles1984 · 08/05/2010 15:31

thanks for your replys

i know i shouldnt worry what others think, but im thinking more for my son iyswim as his friends might ask about him being too big for a buggy and that he can walk! not that i think ds would notice. we have an hauk one at the moment, and although he fits in it he drags his feet along the floor and the harness doesnt fit around his shoulders so he sways about making it very hard to manaouvere.

5inthebd will they still refer me before diagnosis? we live in the north west, but thank you for your very kind offer.

i have just ordered some reigns, the ones that go on his wrist although dont know how helpful they will be when hes lying on the floor

OP posts:

5inthebed · 08/05/2010 15:58

Sorry, thouht you had had a DX. Not sure if they would, but wouldn't hurt in asking. If he is a danger to himself they should.

Look into getting a littlelife backpack, they are really good for children than need to be picked up from the floor

Marne · 08/05/2010 16:06

I have a SN buggy for dd2, i was really worried about people staring at her but they don't really take much notice, we also have a maclaren techno (which i picked up at a boot sale for 5.00) which is large enough to fit her into.

We also have a littlelife back pack which we use if we are popping into a shop or not walking too far.

verycherry · 08/05/2010 16:16

I use a littlelife backpack on my ds, he has cp but is a runner on his frame when out and about, particularly near roads. He hated reins and would collapse when wearing them but absolutely loves his backpack and I have more control with it than reins also.

It is also perhaps less obvious than reins. Although it's completely obvious that ds is 'different' on his frame, people often comment but have never had anything negative and ds rudely ignores everyone

Good luck, I know how hard it is getting anywhere with a child who wants to walk/move in their own special way!!

lou031205 · 08/05/2010 19:47

DD1 is 4.6 soon, and I have tried the following:

Reins - became too small, and strained the strap.

Wrist strap - worried about dislocation/other injury as she pulled away HARD. She has learned to undo them now.

-Crelling harness (heavy duty reins) kindly given by a MNer. Great if she is co-operative. Really long 'lead' to allow some freedom but total security. Downsides - impossible if she is dropping to floor. Also, very hard to get on her in the first place if she is unco-operative.

-Buggy with in-built buggy board/seat at the back -also very kindly sent by a MNer this week. Great if she is sat in the front of the buggy. Brilliant if she is co-operative on the buggy board/second seat. But if she wants to be awkward, she can drag her feet, and flip the brakes - on or off - which is dangerous. So if she is unco-operative, she has to be in the front.

I was told yesterday that her Maclaren Major will be arriving by the end of the month. I can't wait.

MiladyDeWinterOfDiscontent · 08/05/2010 20:45

Another vote for the Little Life Backpack

DS loves his, he has more freedom plus the pressure soothes him. I have lots more space in my bag now that he is carrying the nappy and travel wipes.

Thinking about getting a Mac Major myself though, he is so strong now and phobic / fearless around cars and buses.

Original poster

kimbles1984 · 08/05/2010 20:46

the littlelife backpacks seem to be a favourite! wish i hadnt ordered the wrist strap now!

i guess i'll just have to put up with it till he gets diagnosis, whenever that may be... everything takes soooo long, only just got his first salt appt next friday and he's been waiting since november.

buggy board, hadnt thought of that! great idea if he is tired and also can carry shopping in the front probably not so helpful with the kerb obsession though..

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BigWeeHag · 09/05/2010 08:24

DS1 is nearly 5 and still fits in our Nipper double - maybe a single 3 wheeler would fit your DS? You can get them cheap as chips too

If you got a mountain buggy terrain, they can change the footplate to make it last until the child is 9. That would be my option if I didn't have DS2 - but a double MB is too dear.

fanjoforthemammaries7850 · 09/05/2010 08:25

My DD is 3.6 and very tall for her age but still fits in a Maclaren XLR..not sure for how much longer though!

She also has a Little Life Backpack, she will hold my hand quite a lot when outside but the wrist loop reassures me so much that she won't run out into the road.

fanjoforthemammaries7850 · 09/05/2010 08:27

can I quickly hijack this thread to ask Lou how long you had to wait for your DD's MRI results when she got her DX? It's just my DD sounds very similar to yours, and her MRI was on March 10th..no results yet...

fanjoforthemammaries7850 · 09/05/2010 08:31

(scared to call for results so want to wait, if this length of wait is normal)

TotalChaos · 09/05/2010 08:48

fanjo - I work in hospital admin - that sounds like way too long for the results - IME it can take a few weeks - as the MRI department need to report on the MRI, then send the report through to the referring consultant, then consultant will want to get her notes, then review the report and notes, then either dictate a letter or arrange an appointment with you (or both). So I think you should phone and chase. Something could be stuck in a typing backlog...

fanjoforthemammaries7850 · 09/05/2010 08:58

Yes. She was also having genetic tests which we were told would take a long time, I seem to remember 3 weeks and DH remembers 6 weeks. She also had an EEG on 25th March. It still does seem a long time though.

It's outrageous if it is stuck in a backlog though, it has been such a stressful time, everything they are looking for is progressive.

TotalChaos · 09/05/2010 10:15

it could be some reason such as waiting for the genetic results to be back as well, hopefully it's not some sort of admin glitch, but definitely chase it up. I know it's horrible making these phone calls but don't let it slide, what if a letter has got lost in the post or something..... bad results do usually get dealt with quicker, get marked up as urgent, so hopefully no news is good news iyswim.

verycherry · 09/05/2010 11:20

fanjo ds had his MRI on march 2nd, we were told results would be with paed in 3 wks. The date it was reported on was march 29th, I had already chased it up before then, and paed rang me with results not long after.

I would definitely chase it up, we still haven't got appt with paed that was due in march despite chasing it ...

Original poster

kimbles1984 · 09/05/2010 16:28

fanjo my sons genetic testing took just over 6 weeks, all clear

OP posts:

lou031205 · 09/05/2010 16:46

Fanjo, I think it can depend on your Paed's 'style'. Our MRI was in early April, and we got the result at our routine Paed appointment in mid-May.

Some consultants tell you as soon as they get the result. Others wait until the next time they see you.

fanjoforthemammaries7850 · 09/05/2010 17:50

thanks.we don't have an appt lined up though

fanjoforthemammaries7850 · 09/05/2010 18:47

Think i will give until Thursday and chase it up.

Thanks all, and sorry for hijacking, OP.

Original poster

kimbles1984 · 11/05/2010 16:01

the wrist strap was so not a good idea, ds wore them for the first time today on a trip into town, he loved them, a new toy! spent most of the time spinning in circles round me getting tangled, oh dear .... littlelife backpack it is then! lol

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