Anyone have 2 young children with AS/ASD?

[NikkiSmith]

I feel like I am sinking in very deep quick sand!

I have a perfectly "normal" 6yr old, a 4yr old who has ASD (and proffessionals keep using the word severe) and now my 2yr old is beginning the multi disciplinary assessment process and I am sure he is AS - just like his father!

 

DP is currently out in Baghdad (went on Monday and isn't due back til the end of Feb at the earliest) and all ready I feel like I cannot cope.

 

Does anyone else have 2 littlies like this? and how do you survive?

 

I know I am very lucky to have one night a week respite for my 4yr old, but still I am struggling to get enough sleep to function.

 

Sorry, moan over. Maybe having typed it, that'll get it out of my system.

 

Nikki.

 

I don't really get the time to come on here and post except to ask for expert knowledge and insight from those in the know.

Edited January 25, 2007 by NikkiSmith

[brooke]

Hi Nikki

I have 3 boys the eldest 6 is autistic my middle boy 3 is fine but my youngest 2 is being referred I really dont know how i cope, it can be so hard but i just think no choice i have to. Also now that my husband has changed shifts at least i get his help at night time. Is there anyone who can help you at all?

Its very difficult with young children i just keep thinking hopefully when they get older it will get easier Sorry i dont have much advice but i do understand what its like try and get some time for yourself even if its just an hour when theyve gone to bed. I love reading so i do this when i can

Brooke

[MichelleW]

I'm a single parent with a 6 year old who is " moderate" autistic and a 26 month old, who I think is starting to show some signs of autism, but not enough yet to have him referred (when my eldest was nearly 3, I was told by a paediatrician that he couldn't be autistic). But my youngest doesn't speak, and is even worse than J was at the same age. It is tough, especiallty as I also work Mon-Fri during school hours. I don't know how I'll cope if the youngest does get worse and it is confirmed that he is also autistic. But I find just taking one day at a time, and accepting the way they are has made a lot of difference. Some days are harder than others, but I seem to get through them!!

[elun1]

Hi Nikki, Brooke and Michelle

I also have 2 boys aged 5 and 7. The youngest is severely autistic and my eldest has no diagnosis but he is very very eccentric. He does cope really well though most of the time and sometimes I think I'm imagining it, then at other times I know I'm not. All I have found so far is that like Michelle says you have to take one day at a time. It's hard not to look into the future though. I teach 3 days a week in Primary school, my dh is a shift worker and I find some weeks knackering. My little one with autism sleeps very little. I think you just get used to it. A few weeks ago I was struggling big time: at the moment my head is above water - just!!

My little one shouting me so have to go - you all sound like you are doing so well - I know how hard it is

Elun xxx <'> <'> <'>

[NikkiSmith]

Brooke, Michelle & Elun - Thank you so much for the replies, it really is good to know I am not the only one trying to keep my head above water!

 

I really do admire those of you who manage to work as well as deal with the home life It makes me feel daft for being a full time mum and still not being able to do it all right and fit it in.

 

Now DP is away, it's just me and three boys. Even when the older two are at school I seem to spend all my time clearing up the destruction that's been caused in the house. Even though every door has a lock on it and the place is becoming more and more minimalistic the younger two still find ways to create chaos. My mum is always there for me though, even if it's just to listen to me while I rant.

 

DS2 doesn't sleep! A 20 minute power nap is good enough to keep him going for up to 6 hours and no medication has helped (just makes him bounce of the walls!) DS3 is gradually getting worse on the sleep front too. I usually get to crash around midnight and then I and up and down repeatedly until I finally give in at 5am.

 

We have a fab Health Visitor though and she can see that DS3 is odd! He lives on baked bins, he loves everything neat, tidy and lined up, has fantastic understanding but no speech yet and really doesn't get this emotion thing (ie. change in tone of voice, facial expressions etc.) is obsessed with lights, lamps, lightswitches and door slamming (they all have to be closed!)

Oh and my 4yr old has the floppy wrists thing and 2yr old has floppy ankles, according to the podiatrist!

 

Anyway, better get on with the chaos I call the morning routine!

 

Thanks for reading my mad ramblings.

 

Nikki.

[Karen A]

<'> <'> <'> Nikki.I was feeling a bit sorry for myself this morning.Then I read your post.I have decided that I really don't have so much to be grumpy about.I don't know how long I would last on so little sleep. Regards Karen.

[elun1]

<'> Nikki <'>

You are doing a great job with 3 littlies and no partner there at the mo. You ARE working! Believe me, its a kind of respite going out to a job: at least I get an occasional cup of coffee and a sit down; and I do occasionally get to 'forget' about autism. If I had 3 little ones I wouldn't be working but mine are both in school all day so I work 3 days a week and do my planning, marking and prep etc on the other 2 days. I do find it hard with the lack of sleep but I would at home too. My class keep me going most days; they're so lively andI'm lucky to have a really lovely bunch of kids this year

Take care, You're doing great

Elun xxx <'> <'>

[lisa]

Have you tried melatonin to help with the kids sleeping? It's worked wonders for us even though everything else we tried had my son 'bouncing off the walls' too.

 

It's very hard when they're little, I sometimes think back and wonder how I ever got through it, it seems like another lifetime. We had to have locks on all the doors too!

 

I just wanted to <'> <'> and say it will get easier. Mine are 12 (twins) and 9, two with AS, one with dyspraxia and dyscalculia.

 

<'>

 

Lisa

[JsMum]

Have you looked on the site PARIS there is specific services that may be able to provide some support in between the time of the DP returning, the service I found that was in your area was called SEARCH

 

http://www.searchltd.co.uk

 

also in paris put in assessment centres that could be considered as an urgent assessment.

 

I have one, child, dont know how any one copes with more than that as I struggle with one! so you are doing a fab job, it sounds as though things are really tuff and not enough support, does the 2yr old go to any nursery or playgroups, could they access the early years team?

 

good luck and I am thinking about you.

 

 

JsMum

[NikkiSmith]

Thanks JsMum - I've not heard of them before, I will have to look into it.

At the moment Social Services are providing us with some hours with a MENCAP worker each week and are desperately trying to up it.

 

Lisa - Melatonin worked perfectly on him for a couple of months and then stopped working (even the 6mg a night, which I was told the max.) The paed has tried Vallergan Forte and also Paediatric chloral elixir (which one sniff of should knock an elephant out!) but they both make him even harder to calm down. Have now been told that there is nothing else they can try him with as he's only 4.

 

Nice to know I am not the only one living in a prison!

 

As for playgroups, I rang the fantastic one that put up with ds2 and the lovely lady is looking into whether or not he can start before he's 2 and a half and have a 1-2-1 carer. So now I am just keeping all fingers crossed, I guess the sooner he's there the more people will observe his odd behaviours and he can get the help he needs.

 

Hey ho, better get back to clearing up - I stupidly didn't lock the kitchen door and ds2 decided to go and "cook" with 4pints of milk and 15 eggs................. at least my kitchen floor will be spotless once I've done it!

 

 

Thank you all so much for the replies and ideas, they really are appreciated! It's almost like having contact with the outside world!

 

Nikki.

[joshanddanfans]

<'> hi i have 3 children 2 boys 5 and 7 and 3 year old girl, all 3 have been referred to paeds, 7 year old boy dx asd(aspergers)adhd,dyspraxia and sensory integration dysfunction, 2nd son nearly 6 been in diagnosis process for 3 years he has identical difficulties though shows ,more autistic traits like hand flapping, paeds cant decide, little girl is about to start nursery but will be monitored. I fully understand how difficult life must be especially on your own, you are a star.

[Bagpuss]

Hi Nikki,

 

Big welcome to the forum <'>

 

I have three children. Our youngest is 6 and is autistic and our middle child is AS. Our youngest also has muscular dystrophy. Having a partner who is also working away must be so difficult. I don't know how I'd surivive without my DH helping out. We are really fortunate that all our children sleep, and sleep well. I'm a complete monster without sleep, and would really struggle to manage. We've recently joined some local ASD support groups, which has been really helpful. Being around other parents who understand is a huge help, and I've also found this forum to be a god send. Take care <'> <'> <'>

[darky]

Hi there <'> I have one child with dx atypical autism, ADHD and Dyspraxia, another with Asperger syndrome and Dyslexia, and my eldest son who has a dx of dyspraxia but is currently going through the motions of the ASD team.

 

I find the comunication and organisation issues the hardest. I find it overwhelming at times the amount of stuff i have to do sometimes!!

 

i do admire you for coping with this alone, i have a great hubby which helps loads. i think you are a star. <'>

[JenRose]

hello

i have 2 children M who is 10 and he has PDD/AS depending on which professional you ask, R who is 2 and has CP and is currently being assessed we think that she will be dx,d as HFA and myself, i have AS.

 

You are doing very well on your own with 3 little ones, i cant cope with 2 on my own so you are doing brill.