Autism Support
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Feeling 'Out of Depth'

There are times (increasingly more so lately) that I feel like I'm drowning in the situation surrounding me. I so want to communicate with & understand my 3.5yr old child but feel so far from doing so. I know her 'meltdowns' are her way of expressing both her anger & frustration at not getting what she is after & not knowing how to convey what she would like corrected but having to contend with her screaming, pushing, pulling, kicking & biting can take me to the limits & beyond (It doesn't help having other adults screaming at her to 'Shut up' & telling me to 'Get her under control') & I have to take a step back from it all.

There are moments I wonder whether she'll ever be potty trained. She shows an awareness of her bottom being dirty, sadly this awareness often involves her hands straying into her nappy and then smearing whatever she finds over herself, her clothes, her surroundings....our latest episode saw me having to get her out of bed in the early hours as she had smothered herself & her bedding in poo = dunking her in bath, stripping bed, remaking bed, trying to reassure/calm her whilst all this taking place before finally resettling her an hour & half later.

I feel somehow as though I am letting her down with other people telling me I need to get her potty trained, that I am too 'soft' with her & letting her get away with too much. I worry that I need to let go more as she is getting older now & I need to give some trust but that if I do try & 'trust' her to do things she will get hurt. Part of me says I'm being overprotective of my child whilst another says I'm not doing enough to keep her safe. I wish there was an easy solution to how I feel but I'm left having 'self conflicts' trusting my child to 'behave' whilst friends/family take over her care so I can do tasks such as bathing/showering, visiting Dr/Dentist/Hairdresser, grab a cuppa....I worry so much about leaving her too long (I probably trust my 21mth old to manage without me whilst I do these things more readily than I feel comfortable leaving my 3.5yr old to manage, it's daft). At the end of the day I guess the one person I'm truly letting down is me :(

5 Replies

Chin up! You are doing a wonderful job. Other mothers can sometimes be very good at giving the old "disapproving look" and making you feel awful when it is your child having the meltdown. All children have tantrums, we all have to deal with this, some more than others. I have decided that when other people are mean and criticise it is due to their own insecurity and judgemental attitudes. Perhaps they should be offering you some support and encouragement instead! Ultimately they simply do not understand and should not judge you, they have no right!

Be guided by and have faith in your own instincts as a mother. If you feel your daughter is not ready to potty train and the whole thing is causing stress and anxiety to you both then put it on hold. Mothers sometimes like to compete and brag about how old their child was when they spoke, drew a circle, used the toilet etc. I shut them up by saying, wow that's great and then reminding them that each child is unique and should do things when ready. I also like telling them that Einstein did not speak until he was 3 so it is no indication of anything at all!

You sound very stressed so it is important for you to have a break. Ensure that anyone looking after you daughter is aware and prepared to deal with the meltdowns by themselves, your daughter cannot help this and the adult has to take this on board, Do not hold your daughter responsible and do not let others hold you responsible either. It is just where she is right now. She will change and develop as all children do. but in her own time.

I really feel for you and I hope this has helped! Hold your head up! Being a parent is the toughest job in the world!

Nikki x

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Hi Nikki,

Thank you for your kind words of support. I know deep down that many people are quick to judge the 'invisible illness' - because they can't see anything obviously wrong they assume that we're making things up - & it is such a sad shame we can't get more understanding.

My own specific problem I think is that I myself have 'Aspergers' so always thought I'd understand my 3.5yr old because she shares some of the same traits I have also but because she has 'classical autism' & not 'Aspergers' there are also many of her own traits that I'm not fully grasping (but Hubby still asks me anyway) because I didn't experience them myself (Just yesterday Hubby was asking 'Will her shrieks/squeals during play eventually turn into speech?' & all I could say is 'That is the hope' to which he replied 'Hope isn't good enough, I need to know'...) & this in turn is causing frustration & stress.

We do have 2 lovely children who are both highly affectionate & show their unique personalities on a daily basis. It's just those rare occasions it would be nice if our eldest could tell us what was upseting her instead of us still having to guess, still we get there in the end.

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Hi Springsong,

Like you, I also have Aspergers and so do two of my children. I have a friend with a "classic Autistic" daughter. When her daughter was younger she also used to scream when unhappy or she wanted something. She did not begin to speak until 6 years old. She is now 8 years old and putting words together. My friend used to worry and make herself ill over the lack of speech, it must be awful just not knowing what to expect, I used to tell her that her daughter was full of surprises and to be positive, expect speech to happen and be optimistic. It may be worth doing a bit of research on how common it is for Autistic children/adults to be permanently mute-maybe your husband should look into it since he is asking you for the information. Perhaps there are strategies you can use to encourage speech? I would start with a google search but maybe your paediatrician can advise too? I have used communication cards with my own children who although verbal, cannot easily express their needs and feelings at times-have you tried this?

It's difficult having children who are divergent, largely because other people have such narrow expectations with regard to personality and behaviour and sometimes they can be so mean, I have to endure this too. Never blame yourself, You clearly love your children so much and want the best for them. On a daily basis, when leaving the house I put on my invisible coat of armour and hold my head up! Ready for the the old stares and disapprovals!

I wish you the very best,

N x

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Springsong NSSA & Nikki I can't believe how all your situations are similar to ours. My Grandson has all those characteristics and worse at times. He is improving slowly. I agree that the potty training should not be pushed too much. My oldest son 35 years old went out of nappies at 14 months & was walking & nearly talking English to Degree level! My 5th son was not talking at 4, still in nappies & in the pram! But the one thing different about my Grandson now is none of my 8 children or 9 Grand kids ever went into these rages of screaming and virtual epileptic fits where he DOES become doubly incontinent at times. It's the disconnection from reality that I observe that I cannot understand! He plays with his toys completely oblivious of his surroundings, of other people. Then he switches to TV & mimics cartoon characters but gets over excited & aggressive. My observations are that he is only half in this world. Talk to him & he looks but doesn't hear. I have another Grand child who is only 17 months & she is talking, walking, potty training (but not trained), totally placid. She is not so interested in her toys & much more interested in one to one conversations with family, singing, music, attention seeking. Talking, pointing, discovering. The TV is not important as it is with my 3.5 year old.


my heart goes out to you I am a mum of a 19 year old autistic boy and he was six before he came of nappies and learned to go to toilet don't rush into things and don't worry about other people I used to say he is has a learning disabled problem whats yours ? I know it hard but your love for your child will give you strength you never really knew you had and you not alone out there although sometimes you might feel that way you are the only one that knows you son so just do what you think he needs and what you need to do to get though the day because like most of us parents that have learned and yes I mean we have had to learn how to live with someone with autism you will get there I am still learning and with all we gone though I wouldn't be with my jack take care