Any ASD mums with young children?

[frankerooney]

Hello, newbie here. I'm 36 and Aspergers but no official dx.

 

I have a 3 year old son with suspected ADHD and a 3 month old baby boy. I struggle big time with having little people making constant demands on my life, ruining any notion of a routine etc. But the biggest problem at the moment is settling the baby to sleep. My husband and I do not subscribe to the 'let them cry' theory; we soothe the baby to sleep with rocking, singing, feeding, swaying, finger-sucking or whatever. But I have very little empathy intuition (if that makes sense) - I find it impossible to tell from his crying what he needs. My Mum can tell what he wants and gets him to sleep in a few minutes no problem. But the only way I can do it is to try the techniques that have worked previously for a few minutes each in turn until he responds. Poor little thing! I get tired and frustrated and my back hurts having to hold him so much.

 

I just wondered if anyone else has had this problem and if you've got any suggestions?

[girl interrupted]

my dad was great with me and my brother as babies.

he'd give us our bath,feed us and such then wrap us up tight in our covers and let us lie on our back.

we'd hardly get up and it seemed to work.

[Tally]

Quite a few mums seem to have the same trouble settling their babies, while other people manage OK. I don't think it's a reflection on your parenting ability, and probably not an exclusive ASD issue either.

 

Have you seen those big L-shaped cushions? They help you hold the baby comfortably when you're sitting down. It might be a bit easier on your arms.

 

Wrapping up tight in a blanket can be soothing. Wrapping him up like the baby Jesus might be a bit excessive, but you could try wrapping him in a blanket and see if he likes it.

 

I am not a mum, by the way, but I promise you I am not talking out of my bottom! I used to look after my friend's baby a lot and knew a lot of young families from the Church.

Edited July 19, 2008 by Tally

[smiley]

Hiya,

 

Babies of three months can be very demanding <'> I have memories of my little boy at that age - my gawd, he was beautiful, but bloomin' hard work!

 

Fingers crossed he will get into a routine soon.

 

I know you don't like to leave him to cry - but maybe tally's idea of the cushion is a goodie. You could lay him on it and still be able to talk to, and soothe him - but it also gives baby a little room to wiggle.

 

[sjb]

do you use a dummy?

 

they work wonders for your sanity - believe me, our 10mth old has one, failing that put baby in pushchair and push them backwards and forwards as they like the motion.

 

i have 4 kids in total (5 counting the one we lost to sids) an some dont need a dummy, some did - especially boys i found did!

 

i wouldnt suggest wrapping them up tight in a blanket, cos they can overheat.

Edited July 19, 2008 by sjb

[Sooze2]

Babies are hard, for everyone. I found mine hard anyway because they can't tell you what they want and when so youre not alone so don't worry about it being because you have Apergers, I'm pretty sure I haven't got Apergers but I struggled too <'> Me and DH firmly beleive that there is a secret club of parents who will never tell you that babies are very hard because everyone else seems to cope much better than you and say how easy it is! After a while they start being honest and tell the truth that they find it hard too. Grannies and just about everyone who isn't mum or dad always find it easier to settle your baby because they are detatched and can ignore the crying and fussing. We are programmed to run to our babies every cry because we FEEL their crys everyone else just hears them - it's different.

 

Babies love routine, a lot of women use the Contented Little Baby Book by Gina Ford. You may find it useful because it outlines routines for the baby and tells you exactly what to do and when for feeding/changing/bathing/sleeping. I didn't use it myself because I'm not very good at routines but a lot of people think it's great.

 

With my lot I did the same every night to get them to sleep. I bathed them then took them to their room to give the last feed of the day at about 8-9 pm, when they were in their cots I would read a story and sing them twinkle twinkle to them and leave the room. I did that every night. They had a dimmer switch which I turned right down till you could barely see. When they woke for a feed a few hours later I would feed them without turning up the light and never spoke, everything was kept very quiet. If their nappy needed changing I would do it without talking to them but if they had only done a wee I wouldn't and put them straight back in the cot and leave the room without talking. I wanted them to know that at night I wouldn't be playng or singing or interacting at all so they knew it was sleep time.

 

During the day I did the same thing for naps but obviousely without the bath. If they did cry when I left the room at bed time I would try to ignore it for a few minutes and they would often just settle down to sleep on their own. If your baby like to suck your fingers for comfort you could either put her own thumb in her mouth when she cries to see if she wants to suck of give her a dummy which may her her to settle on her own a bit more quickly.

 

My son didn't sleep much and the only thing that would settle him was listening to Classic FM on a little radio in his room very quietly! I tried every radio chanel at this was the only one that worked. Some babies like a little background noise to lull them to sleep.

 

If you think this is all patronising rubbish because youve done it all before then feel free to swear at the monitor and I won't be upset at all. I just thought I would put down what I did because it may be helpful.

[frankerooney]

Wow, thank you everyone for your suggestions and encouragement!

 

I will definitely give some of your ideas a try. My older son responded to swaddling, so I might try that again with littlun. We loosened his swaddle once he was fast asleep (thanks for the warning about overheating). I will try the dummy again too. I don't really like him sucking my finger because it means he relies on me to settle him (i.e. gives hubby an excuse not to!). Classic FM is a good idea too. We've got a machine that makes the sound of rain or waves and that seems to keep him asleep so I'll see if music would help him doze off. We do the bath - feed - dim lights routine but I haven't often put him straight in the cot to see if he wants to settle himself so I will persevere with that.

 

Thank you all again.

 

frankerooney

[bid]

Hi and welcome to the forum

 

I've got 4 kids, and this is what I did with all of mine. Apart from odd unsettled patches because of illness and so on all mine settled well.

 

From when they were new babies I would have a bedtime routine which involved a tape of nursery rhymes (always the same tape) so that they very soon seemed to connect falling asleep with that particular music. It worked really well, and was great if we went away or they were in hospital because even though it was a strange place the music seemed to have the same effect.

 

I also gave all of mine a muslin cloth. When they were new babies it was fitted over the head end of their sheet under their heads, then as they got older they had it to hold. Again the smell and texture seemed to have the same effect as the music.

 

Mine were all thumb suckers instead of a dummy.

 

I have AS myself, so I tried to think logically and thought of Pavlov's dog.

 

Good luck

 

Bid

Edited July 20, 2008 by bid

[frankerooney]

Thanks Bid, that's a very good idea. The 3 year old and I both have a muslin cloth as a 'cuddly' at night (I hope he grows out of it before he's 36 though!).

 

I was hoping to find another AS mum so thanks for chipping in. I guess you enjoy having little people in your world if you've had four of them but do you ever struggle with 'personal space' challenges, in a physical way or as a time-to-yourself issue? And do you have trouble with empathy? I do wonder what my children are missing, with me being differently wired, as they say.

[Sooze2]

To be honest it doesn't sound as if they'll miss out on anything because you are trying so hard to make sure they don't by the sound of it. You sound like a great mum.

 

My DH hasn't got any empathy, the other day one of my daughters had a sore leg and sat beside him crying her eyes out and waiting for a cuddle, he just sat there an didn't move to put his arm around her or anything and I had to tell him to do it and he couldn't understand that she just needed cuddles. BUT she just wanted to be near him, she adores him and still cries when he leaves for work every day. Your kids will be the same, they will love you and as far as they are concerened everything you do will do will be right for them just because you are their mum. If you need your space tell them, I do! I get annoyed if they are all over me all the time and feel clostraphobic, it won't do them any harm if you leave them to it for a little while so you can get some air. I go to another room or pop outside the back door for a ciggie just to free my brain for 10 minutes, they know I need it and will be happier when I come back.

Edited July 20, 2008 by Sooze2

[frankerooney]

Aw, thanks Sooze, you started me blubbing! My husband despairs at my lack of empathy! If he hurts his leg or something I say oh dear and he says 'is that it? thanks for the sympathy' but unless I need to take him to hospital, I don't know what on earth I was supposed to say! He just rolls his eyes and goes to someone else for sympathy!

 

I noticed that your signature mentions that your 8 year old possibly has ADHD. We are going to start investigating the implications of sometime getting a dx for our 3+half year old. Do you know of any good web sites or books that would help us weigh it all up?

[bid]

Thanks Bid, that's a very good idea. The 3 year old and I both have a muslin cloth as a 'cuddly' at night (I hope he grows out of it before he's 36 though!).

 

I was hoping to find another AS mum so thanks for chipping in. I guess you enjoy having little people in your world if you've had four of them but do you ever struggle with 'personal space' challenges, in a physical way or as a time-to-yourself issue? And do you have trouble with empathy? I do wonder what my children are missing, with me being differently wired, as they say.

 

Yes to all of these!!

 

I find it very difficult over personal space and time, especially as they have got older and no longer go to bed early.

 

I also feel very 'detached' from them, although I love them very much. I have to consciously think about interacting with them, often 'acting' rather than actually feeling the appropriate emotions.

 

I worry too that they are being short-changed in some way

 

Bid

[darky]

I hope you don't mind me chipping in also!! I struggle with empathy to. If one of mine falls over I don't react and rush to give them sympathy, not unless they are really hurt and there is blood, and then I tend to go OTT in panic and usually my husband steps in. Most of the time I say up you get, come on!! That makes me feel quite bad sometimes. On the whole I cope really well with my children as they are all my flesh and blood, but I do find other people's children difficult to cope with. I never know what to say to them. When another child wants to sit on my lap and show affection, it feels like they are a germ to be honest! Like Bid I feel kind of weirdly detatched and that sounds like rubbish I know, but I need my space as well, sometimes time to sit in a quietend dark room to de-fuzz and I try my hardest, but my girl can be insatiable and I find that hard to deal with. She is getting better now, as she often needs her own space so it is easier to explain that mummy needs a chill out. Daddy is then on hand to deal with any needs. I also find the tone of grisling and whinging hard to deal with. A full on scream or proper cry when they are genuinely upset I can cope with, but being followed round with the grisles I can't deal with, and often I will shut myself away rather than spin out.

 

Anyway, I used the muslin cloth with mine as well and it seemed to work well. All mine were totally different as babies. My eldest had a dummy up til he was 18m, my middle one had his thumb, my youngest had nothing!! My eldest was a screamer for 4 months, I suffered really bad postnatal depression with him, my youngest son was happy enough until I put him down and he wailed the place down. I used to warm his cot with a hotwater bottle, (removed the bottle before bed) I used to wrap him up, give him a muslin cloth and in addition I used to put a small item of my clothing in his cot. It was winter mind you. My girl was just hungry all the time. Well it seemed that way. She would gannet down bottle after bottle, and would still be routing for more. When they were babies, I found it easier to have a routine. It sounds silly, but my days were mapped out precisely, and still are. I find it easier to keep to a routine, then I know exactly what I have to do.

 

Hope that helps a little. You are far from a bad mother. It seems as if you are doing a wonderful job. <'> <'>

[Sooze2]

I first thought about DS being ADHD when he was about 18 months and I was at my wits end with his lack of sleep and imense energy, he needed constant attention all day every day and had to be at my side at all times. He wasn't really naughty as such in that he didn't like those typical boy things like fighting etc he just had boundless energy and would screem and tantrum beyond the limits of what a person can put up with! I bought Chris Greens Toddler Taming book to see if it could tell me where I was going wrong and there is a really good section in there about ADHD and has tick lists to see if your child could be showing signs. I think he has written a book just about ADHD but I'm not completely sure about that. I also have The Dummies guide to ADHD which is very good too. I like to research things as you can see There are loads of websites about it and the NAS website has info about it too and lots of links that take you to good sites.

 

Its funny what you say about your husband, mine is confused at the moment because this evening I am in a lot of pain due to a rheumatiod arthritus flare up. I have still showered the girls, done their hair and walked/crawled up and down 2 flights of stairs dealing with my son and still he isn't giving me any sympathy for the state I'm in. I can laugh now because we have both realised that he is probably Apergers himself because everything that comes up about DS he thinks is ok and he has told me to tell the consultant that the reason he hasn't been supportive of me is that he thought all was well because he is just like his son! I thought that was very brave of him.

 

I would love to hear from you or Bid with any tips you can give me about being an adult with Apergers because I used to think he was just hard hearted but now I am starting to understand.

 

Sorry this is long. They always are!

[bid]

Yes to all of these!!

 

I find it very difficult over personal space and time, especially as they have got older and no longer go to bed early.

 

I also feel very 'detached' from them, although I love them very much. I have to consciously think about interacting with them, often 'acting' rather than actually feeling the appropriate emotions.

 

I worry too that they are being short-changed in some way

 

Bid

 

Just to add, I got very upset over this when I had my dx assessment.

 

But the really great psych. told me that it was fine because my DH and I both brought different skills to parenting, which complemented/balanced each other out. I am very practical, making things with/for them when they were little, decorating their rooms, etc, and my DH talks and explains things to them. That is something else I struggle with...when they ask me things and they want an instant answer or explanation: my mind just doesn't work quickly enough to be able to answer them adequately

 

I worry more for my two NT kids. The other two, one has a dx, and the other is quite spectrumy, and she says I'm the only person who really understands her, so that's good.

 

I still feel bad though Like you, Darky, if my kids hurt themselves I don't really feel anything, I act as I know I am expected to act. But on the plus side, when my littlest broke his arm quite badly when he was 2, I was the one who was calm and knew what to do!

 

My kids all know I have AS, but I do worry that I might be someone they 'worry' over as they have seen me when I've been very upset, especially as they get older, which I don't want to happen

 

Bid

Edited July 20, 2008 by bid

[bid]

I just found this that my eldest DD gave me for my birthday this year:

 

Why I love my mum. My mum is the best around. She...

 

1. Flew to Scotland for my ears (to see Ian Jordan).

2. Ordered a fabby pair of frames for me.

3. Organised a card about my glasses for my teachers.

4. Gives me hundreds of lifts to school.

5. Has always loved me.

6. Gives me hugs and kisses.

7. She completely understands me.

8. Organises shopping trips.

9. She's completely mad!

10. I would be absolutely no where without her. I love my mum to the moon and back. I love the silly little things she gets now and then, like comics. I love the way she does so many chores for us. I love the way she's so arty and clever. I love it that she moved house. I love her strange, Aspy ways. I love my mum a billion times to the moon and back. I love her for more than just 10 reasons but it would take a lifetime to write them all. I love my mum.

 

Bid

[Flora]

Bid That's really lovely

 

 

Re the aspy parenting thing, I've thought a lot about this. A year or so ago I was in correspondence with a certain prof who is well known in the autism world.... he told me that he has found that parents with AS are often more empathetic with their kids than they realise and this could be down to the fact that our kids, as part of the growing up process, are learning to fit into society and learning the social rules, and because people with AS have generally struggled with those rules and fitting in at some time in their life, then they are more in tune and sympathetic to the difficulties that kids and teenagers have with social rules etc.

 

I also believe that the so called detached feeling we have is something that, if coupled with practical support and all the other nurturing activities that go with being a parent, can actually promote a very healthy relationship between parent and child.

 

Me and my kids really enjoy each others company and I know it's because I'm not bossy or overly fussy or overbearing about things. I also know how distressing it can be when you feel you have no control in your life or no say in major decisions, I always give my kids at least the appearance of having a choice and having some control. In fact I've found that as a form of discipline (the dictionary definition of discipline that is) handing over control has worked wonders for my aspy son. An example of this was when he was fighting against settling into his new school, and I told him that nobody could force him to like it, but that he had to realise that if he continued like he was the decision to go there would be taken out of his hands and mine in the form of being expelled!! and that it was his future he was damaging. As a result of that one conversation and a few more like it he changed his attitude virtually over night and went from being a reluctant, isolated student to a postive student making a good contribution to school life. (I made that sound really simple, it wasn't, it was a torturous few weeks but we got there in the end)

 

Sorry if I've gone off on a tangent, I just think that there are many positives to being an aspy parent that can outweigh the negatives. For me the negatives include wanting alone time which gets increasingly difficult when you've got teenagers in the house!!!

 

Flo'

[darky]

Flo you make some cracking points there I am always going on about choices in the house! I have done tons of work on my girl on consequences and choice. I explained that everything has a choice and consequence and she was in control of what she does. Put it simply, one time we walked round the house, I asked her to turn on the light, I said what turned on the light? She said the switch did, I then explained and showed her the switch does not work by itself and that it needs someone to press it for it to work. We started from there. Something simple, but trying to teach her that the choices she makes, has a consequence. I always say, well you could do things this way, but this is going to happen, OR you could do it this way and something else will happen, you make the choice. It does work brilliant. My teenager has responded brilliantly to that as well.

 

When you wrote "Me and my kids really enjoy each others company and I know it's because I'm not bossy or overly fussy or overbearing about things" that struck a chord for me. Really well put. I was going to try and put something like that but I couldn't word it right. You took the words out my mouth.

 

I think it is incredibly positive in lots of ways being an ASD parent of ASD children. It is easier to understand why they might cover their ears, scream, meltdown or find a situation difficult, but having been there and still am, it kind of helps in realising they can do things, as I don't think we worry as much that they can't because we have delt with these situations growing up as well and coped, and back then there was not any help or support to do it, nor explainations for why we might have felt different growing up, so for me at least, I knew I grew up constantly trying to make sense of everything and learning from other people not professionals.

[frankerooney]

... I do find other people's children difficult to cope with. I never know what to say to them. When another child wants to sit on my lap and show affection, it feels like they are a germ to be honest!

 

Oh yes, darky, me too! My sister-in-law was quite put out the other day when her 2+half year old daughter went around kissing everyone goodbye; she got to me and I reeled and said can I blow you a kiss instead. Poor little girl was a bit confused and there was a bit of an awkward silence, but I'm glad I understand a bit about Aspergers and why I had that reaction.

 

At church they keep asking me to help with the creche! NO WAY! On the occasions I've been in there, I've been unable to look after any kids other than my own, I don't understand what they're saying or doing and the noise turns me into a lump of jelly!

[frankerooney]

I would love to hear from you or Bid with any tips you can give me about being an adult with Apergers because I used to think he was just hard hearted but now I am starting to understand.

 

My hubby has learned to tell me when I need to say hello and goodbye. I don't think he'll ever get me to say 'how are you' to people - what a pointless random question that is! And there are misunderstandings due to me taking things literally. But the hardest thing for him is lack of physical contact. I do feel sorry about it - we didn't know anything about AS when we got married. He especially likes cuddles and back rubs so I have to make an effort to remind myself to do that but if I'm very tired I find it hard. Come to think of it, I don't even know if that's an Aspie thing? Maybe I'm just a weirdo! Well we've been married 6 years and got 2 children so I must be doing something right!!

[Flora]

I've just read through this thread again and something else occurred to me which demonstrates that empathy does not only exist between aspy parent and child. My son goes to an AS specific school and the support that those kids give each other is amazing. When Bill was at mainstream school he had no friends. Once or twice he had a 'tenuous' single friend but he was mainly just the boy by himself. Now he is at a school where everyone has similar difficulties (they all have an AS dx) and he has support and enjoys full integration with his peers. He has learned to consider other people's feelings really quickly and that has transferred to his home life; he's only been there since April! To me that speaks volumes about how our kids can really come to life when the pressure of feeling different is taken away, and they can learn to fit in to a broader society in a methodical way with a minimum of stress.

 

Flo' X

[darky]

Flo I help out in a holiday club for children with developmental disorders. We have children of all ages and abilities, some MLD, one SLD, most higher functioning. None of them are judgemental at all and they all just muck in and help each other. It's lovely to see it, it really is. From that I decided I wanted to live on Asperger Island