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Worried Mom needing some advice & support.

NAS84364

Hi everyone, I stumbled across this page as I’m seeking some guidance and support from experienced people in this area.

My lovely little 3 year old boy is at the start of his journey of seeking a diagnosis for ASD (and potentially ADHD but will follow after ASD diagnosis).

I’ve always deep down in my heart knew something was “different” as his personality traits displayed didn’t feel like typical baby / toddler behaviour but my family thought it was too soon to tell or it just was me overthinking. 

November last year his nursery confirmed they agreed there was both ASD and ADHD traits and we should start the ball rolling to refer.

I am a single parent and my greatest worry at the moment is mainly that I am doing the right thing and supporting in the best way possible. I some days feel like a total failure, especially as my son repeats phrases a lot and his favourite at the moment it “make mommy sad” which is heartbreaking. I really need some support and guidance in how to control or support better some of his meltdowns and behaviour in the right way.

His main characteristics of ASD are:

- Hand flapping when excited or running up and down / around.

- Cannot sit still for very long. Meals out are a no no.

- Doesn’t like to interact with children his own age or younger. Prefers older children or adults.

- Not very imaginative, doesn’t participate in role play / imaginative games / toys eg toy kitchens, dress up etc. Very practical minded.

- If he enjoys something (like the iPad!) he could spend all day on the same activity.

- Echolalia type speech, repeats favourite TV shows to engage in conversation. Does talk some of his own words, mainly yes and no, when he does speak “on his own” it’s difficult for him to physically get out and get the words in the right order.

- I feel his “stim” is to repeat phrases. He repeats phrases when he’s scared or over excited.

- He can’t handle sad / upset emotions. If there is a person or cartoon on that has a sad / angry / upset face he will lash out or hide or throw something. 

- He hits out at nursery if children are sad / crying / making upset faces / loud noises (I’m not sure if this is ADHD based though)

- His meltdowns are uncontrollable at times and all I can seem to do it’s create a safe space to let it ride out or physically carry him back to the car kicking and screaming if we are out which is making going out alone very difficult and quite isolating.

- He will not brush his teeth / have his hair cut / washed. This makes him very very angry and sad more so than typical toddler behaviour I feel. Without forcing I couldn’t do it. So I must admit a lot of the time I don’t until I get some guidance as to how.

These are just some of the traits that lead me to believe he has ASD but I can’t be 100% sure of course and I am now seeking a private diagnosis due to the waiting times - if he does have ASD I want to make sure he has a diagnosis prior to school so he can have the best possible start.

I guess where I am mainly struggling is his meltdowns and if he finds something too much (eg emotional faces). When he reacts - what is the best way to support? I have tried hugging, thinking time (he gets confused by this I feel) but sometimes I can’t just leave him to it because he will trash the house sadly if I didn’t intervene. I have been putting him in an empty room behind a gate to cool off but how do I react? Do I tell him what he’s done wrong and why he’s there? Cause that’s what I have been doing. And I say when you are ready to come out I’m here “I’m ready to say sorry” and I say are you? And he says “no!” So it’s kind of like do I just keep persevering? It somehow feels cruel to do as I don’t know his level of understanding due to potential ASD so I’m just totally lost sometimes and full of self doubt.

Im sorry for the ramble - it is a totally new world for me and I just want to get it right for him and some support for myself to be able to cope some days with it all and ensure I am being the best mom to him I can be.

Thanks for reading and any advise would be really appreciated.

Parents

  • Sounds like you are doing really well for him. One thing I would say is that I’m not sure you should be telling him he’s done wrong when he’s had a meltdown, it’s different from a tantrum. Meltdowns are a reaction to something that is causing him to be distressed. Is there anything you know that he finds calming? Could you  put some blankets he likes the feel of or sensory style coloured lights in the room you use to help calm him down? My daughter likely has ADHD she doesn’t necessarily have meltdowns (they are very rare for her) but if she does get upset she can really struggle to calm down and gets upset because she wants to stop crying. In those situations distraction works well for her

  • in reply to GuybrushThreepwood

    Thank you very much for this! Sorry maybe I wasn’t clear, the only time he will go into “thinking time” is when he is smacking / throwing / hitting but not during a meltdown. I totally agree meltdowns are different. It is only during those times when he hits and I ask him to stop and remind him why we shouldn’t hit and if he’s frustrated he can hit a pillow or we’ve tried breathing etc but I’ll be honest the only thing that would distract him in that scenario is an iPad. Nothing else would work. So what would you suggest for when he is not melting down but hitting / pushing etc? 

  • in reply to NAS84364

    Also to clarify, the reasons for the hitting / smacking is typically because I’ve said he can’t do something or have something. It’s usually a reaction to a no and I’m very careful not to say “no” I will always try to say why don’t we go and do this and that. It feels like a minefield! If it’s a reaction to some bring he’s seen on the tv or something he can’t cope with he wont go into thinking time at all I will just take away what is causing him distress and distract. But alot of the time now he’s hitting on purpose and then saying he wants to go into thinking time but I do explain that he doesn’t need to go into thinking time mommy will let you know when you need to but if you want to have a think why don’t you go over there or do something or whatever. It’s really difficult to pinpoint each scenario. 

  • in reply to Glitter

    Yes I must admit I have been guilty of letting him go onto YouTube kids and some of the videos still can distress him even if they are kid friendly so I think I need to revamp it and get some offline games added. That’s a good idea.

    yes I’m going to try and walk him there if he wants to go next time and we how he feels about it. 

    I will definately try and learn as much as I can and watch some videos. Yes we’re moving soon so I’ll try and see what calming things I can put in there for him. He loves his star lamp he’s so into space at the moment so I might bring that down.

    thank you - I’m desperately trying not to get it wrong for him. I appreciate all the advise it’s so helpful.

  • in reply to NAS84364

    I think it very much depends on what you have installed on the ipad.  You don't want him having unlimited access to the Internet or YouTube, for example.  I let my spend time playing games that are offline, which is great for relaxing.  It's also given them something that they enjoy reading which has improved that skill very much.  And it sets them up for IT skills which is great.

    I think it's important to have the discussions about hitting etc with him at a time when he is completely calm, and try to work out together ways that he can regulate his emotions.

    I would suggest letting him go to thinking space when he asks, so that it's a tool rather than a punishment.  You could ask him each time whether he'd like you to stay or be by himself.  But I also like Guy's idea of putting in some mood lighting and some stim toys so it's like a safe space.  I'd keep the ipad out of there though, just to keep it as a seperate thing.

    Keep going, you're doing well.  Keep listening to him, his behaviour as well as his words.  And if you have time, look up some blogs or videos from autistic people so that you can learn his "language" and how autistic brains actually work.  

  • in reply to Glitter

    Thank you so much. Yes I have tended to take him there but then I think I’ve been treating it more like thinking time in a naughty sense without even realising as I close the gate and walk away. I think I should be more going in there with him in the calm space? He is very habit creating so I just don’t know if it’s a new habit to want to go in there.. it’s really tough to know what to do for the best. I have learnt a lot today though as I realise that a lot of the hitting I should ignore and not communicate rather than try to explain why it’s wrong immediately and take him to thinking time. I have always felt like if I don’t punish the hitting he won’t understand it’s wrong but I think ignoring and distracting are the key as the time out space is just confusing for him now. Do you think using an iPad as a distracting technique is harmful in ASD children? Should I be trying to limit this like I would with the average toddler? It’s so difficult to know what parenting to amend to suit his needs and when I am simply giving in. I hope that makes sense. I think this is why I need some professional support.

  • in reply to NAS84364

    If he says he wants to go to thinking time (is that the empty room?) Then maybe he's recognising that he needs a calm, quiet space.  And that's good for him.  I just posted in another thread that meltdowns happen after things have been building up for a while, and the best way to deal with it is to learn the triggers that cause the buildup of stress and find ways to avoid or reduce them.  For example, when out and about there is a lot of information to process, and he doesn't know what's going to happen next and it's all very frightening. Learn to spot when he's starting to struggle and take him to a safe place before he falls apart.  

Reply
  • in reply to NAS84364

    If he says he wants to go to thinking time (is that the empty room?) Then maybe he's recognising that he needs a calm, quiet space.  And that's good for him.  I just posted in another thread that meltdowns happen after things have been building up for a while, and the best way to deal with it is to learn the triggers that cause the buildup of stress and find ways to avoid or reduce them.  For example, when out and about there is a lot of information to process, and he doesn't know what's going to happen next and it's all very frightening. Learn to spot when he's starting to struggle and take him to a safe place before he falls apart.  

Children
  • in reply to Glitter

    Yes I must admit I have been guilty of letting him go onto YouTube kids and some of the videos still can distress him even if they are kid friendly so I think I need to revamp it and get some offline games added. That’s a good idea.

    yes I’m going to try and walk him there if he wants to go next time and we how he feels about it. 

    I will definately try and learn as much as I can and watch some videos. Yes we’re moving soon so I’ll try and see what calming things I can put in there for him. He loves his star lamp he’s so into space at the moment so I might bring that down.

    thank you - I’m desperately trying not to get it wrong for him. I appreciate all the advise it’s so helpful.

  • in reply to NAS84364

    I think it very much depends on what you have installed on the ipad.  You don't want him having unlimited access to the Internet or YouTube, for example.  I let my spend time playing games that are offline, which is great for relaxing.  It's also given them something that they enjoy reading which has improved that skill very much.  And it sets them up for IT skills which is great.

    I think it's important to have the discussions about hitting etc with him at a time when he is completely calm, and try to work out together ways that he can regulate his emotions.

    I would suggest letting him go to thinking space when he asks, so that it's a tool rather than a punishment.  You could ask him each time whether he'd like you to stay or be by himself.  But I also like Guy's idea of putting in some mood lighting and some stim toys so it's like a safe space.  I'd keep the ipad out of there though, just to keep it as a seperate thing.

    Keep going, you're doing well.  Keep listening to him, his behaviour as well as his words.  And if you have time, look up some blogs or videos from autistic people so that you can learn his "language" and how autistic brains actually work.  

  • in reply to Glitter

    Thank you so much. Yes I have tended to take him there but then I think I’ve been treating it more like thinking time in a naughty sense without even realising as I close the gate and walk away. I think I should be more going in there with him in the calm space? He is very habit creating so I just don’t know if it’s a new habit to want to go in there.. it’s really tough to know what to do for the best. I have learnt a lot today though as I realise that a lot of the hitting I should ignore and not communicate rather than try to explain why it’s wrong immediately and take him to thinking time. I have always felt like if I don’t punish the hitting he won’t understand it’s wrong but I think ignoring and distracting are the key as the time out space is just confusing for him now. Do you think using an iPad as a distracting technique is harmful in ASD children? Should I be trying to limit this like I would with the average toddler? It’s so difficult to know what parenting to amend to suit his needs and when I am simply giving in. I hope that makes sense. I think this is why I need some professional support.