Undergoing assessments, needing support

hi, I’m new to the community. I have a son who is 4 and undergoing assessments.

we had the paediatrician yesterday and since I’ve been feeling at a loss. So many questions and feelings going round in my mind. 

We’ve already had an assessment with speech and language who have offered no help, he’s had the social skills assessment last year where he scored mild - moderate and he’s had ongoing play therapy since last year. The last few months things have got worse - anxiety and ocd traits have got so much worse even though the paediatrician says they can’t diagnose either as he’s too young yet it so clearly is - play therapist and nursery think so. His anxiety attacks are getting worse to the point he’s having palpitations and can’t breath or talk and the trauma from this then leads to a melt down and is inconsolable and takes hours to calm again. It is change of routine that majority cause the anxiety/meltdowns, or if he isn’t wanting to leave me (for nursery). Certain things he was ok at last year have got worse too - his speech is ok with people who he’s comfortable with and can have decent conversation but to people he isn’t so comfortable with it’s like he reverts back to baby - choice a baby voice and very unclear. Another thing that’s got worse is his drawing - paediatrician said it’s very immature but a year ago he could hold a pencil proper/draw properly and was starting to learn how to spell his name but now he holds his pencil like a toddler would. This does corncern me a lot.

next steps is the paediatrician is referring us for bloods and a genetic test? She also said she was concerned at the fact some changes in his behaviour have happened so suddenly - last year he went from being a typical happy boy to not even want to play with any his toys. She never said too much as my son was really anxious and listening to what was getting said. And also getting referred for an ADOS assessment which is a 6 month waiting list in our area. Other than that not much else what said and no other support was offered, she doesn’t want to see us again until September. His nursery isn’t happy as they were hoping more support would be offered as he isn’t toilet training and starts school after summer.

im feeling pretty low at the minute and I can’t help but blame myself for all this, I feel like I must’ve done something wrong. To top it off, at nursery party invitations got handed out by one of my sons friends and he wasn’t invited. It hurts that he gets excluded, he asked me what was getting handed out and I never had the heart to tell him. He takes everything so personally and I knew he would be upset. 

Im sorry if I’ve posted in the wrong thread, I just needed to unload everything that’s been going on in my mind today/yesterday. 

  • I am so sorry your child and yourself had to go through that, that person is a vile excuse of a human!! That actually makes me feel quite sick! So far it's just comments/remarks and exclusions from parties that we've had to deal with - as you said some people are so ignorant, They simply don't think about their words or actions. You're an angel too and a wonderful mummy!! 

  • Don’t feel ashamed for cryin were only human it’s definately not a sign of bein selfish it’s fruatration. Frustration that we don’t know how  we should deal with it and frustration that we can’t take their feelings and impulses away To make it easier for them. You sound like your dealing with his behaviour in the best way you can and for that you are amazing I know it’s hard my son has outbursts but they always seem to be aimed at children around his age which is hard because then I have to deal with the other child’s parents. Some of which are completely ignorant and should definitely not have children of their own. I’ve had a fully grown supposedly ‘man’ call my son a c**t physically harm him and bite him that badly on the thigh it went black and nearly bled all because my little confused  2 and a half year old bit his daughter on the hand. Unforuntunately you will come across people who are completely ignorant and vile who think they’re just horrible naughty children but the only horrible horrible people are the idiots who choose to pass judgement. Keep on doin what your doin you are an angel xxxx

  • Thank you! Hearing those words does mean so much. I have zero support and not many people to talk to about this so I find myself bottling it all up in mind. Bless you! You’re such a kind person! 

    I think as parents we all want to shield and protect our children as best as we can and I think that’s why I’m being so hard on myself. You’re so right though, taking it one day at a time is best. I thank you again for replying :) I guess I do need to stop doubting myself so much. Thank you! X

  • Thank you lonewarrior! Your reply is most insightful and it’s lovely to hear from someone who’s grown up with these problems and struggles. 

    Some of what you’ve described is what my son is like, sensitivity, more calm at nursery but once home that’s when he releases any anxiety’s or struggles that day. Like for instance he could happily wave goodbye to the teacher all smiles and if he’s quiet on the walk home then I know they’ll be a meltdown once home and that something has upset him. He’s seems to take all his anger out on me - hitting and saying hurtful things. His play therapist says he does this as he feels most comfortable with and I do understand that but I do worry at how it could escalate- first it started with just words, now it’s reacting on impulse - hitting, breaking things etc. 

    I want to be able to support him the best I can and understand more how his mind works - daily it is like he’s having constant battles in his mind. 

    I feel selfish for admitting that I feel like I’m struggling, I just worry about so much and I just want to shield and protect him from all of this but I can’t 

  • You are not selfish at all. It's a sign of how much you love and care for your son that you are worrying so much, a selfish parent wouldn't really care what their child was going through. You so clearly do care and it is a lot to deal with. 

    After reading your other post about your day at the park, I really admire the way you so clearly understood your son's behaviour and how you dealt with it. Well done! You don't need to worry so much about IF you can deal with this, it looks as if you are already dealing with it and doing a fantastic job! Give yourself the credit you deserve for all that you ARE doing. One day at a time, one tantrum and hug and sleep at a time, you will make it.  

  • Thank you for your reply. It’s nice to hear from someone who’s going through similar. 

    You sound like a wonderful mummy!! Your kind words mean a lot! We had a better morning today but this afternoon we went to the shops then park but had to leave early than we normally would due to high winds/rain and this triggered a meltdown as he hadn’t had a turn on everything (he has to do things in certain order in the park) he stormed right over to dogs mess and deliberately stood on it and it was like he acted on impulse and couldn’t control. As soon as he finished stomping he froze and it was like it hit him what he had done and then he was even more upset because it was all on his trainers.

    i came home, cleaned him and then went off to a different room and cry, I feel so ashamed for crying and so selfish. It’s like constantly watching him have this battle in his mind and I so badly want to help him but not sure how. I want to make everything so much easier for him 

  • Thank you for replying last night, my mind has just been all over the place recently and struggling to sleep. I worry about so much, the unknown. All this is so new to me and sometimes I question if I am strong enough. I feel selfish I have these worries when it’s him who has it all going on. Thank you so much for your kind words x

  • Just to add,,I am fifty plus years old and Male, without my mum looking out for me and doing everything she could then I would be a very different person right now.

    I am married and have two grown up daughters, one has given me a grandchild.

    My mother did what she thought right and at a time back then when any child not fitting in was rejected with mostly considered the fault of the parenting.her love for me and stubborn determination made me who I am today. A kind thoughtful person.

    You are both wonderful caring mothers doing everything you can for your precious child. Keep talking, keep finding out from here and everywhere else. You will build up a picture of how our minds struggle to understand a language and ways we don’t quite get!

    We don’t have a disorder ,we have an alternative thought process, we are more literal, we see things more black and white.

    I hope you find answers from people like me, and that once you understand the complex minds we have you will begin to unravel our thoughts,

    As a young child Sensitivity is one of many things that effect us, we don’t like change,

    we become overwhelmed with little things, for instance just being told to sit at a different desk than they are used to raises many questions in the mind of a child, it may just be a small thing but it matters to us, we analyse everything,

    The child may not react at school because of the change, they may show it at home,so apparent misbehaving is often an inability to cope with any given situation, the biggest hurdle is to find out what, difficult for any mother not yet given the understanding of the unique wiring we have, 

    I could go on and probably will as that is my way, 

    Keep being strong, look after yourself you need to be healthy for your child, you are lucky although it may sometimes seem not the case, today much has been learnt, just being here and able to find out the potential reasons and answers is amazing,

    big hugs to all thevstrong parents out there, and especially to you two.

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  • Don’t ever blame yourself. I am goin through the same thing at the moment although assessments haven’t yet been put in place as my son is still very young. I have a older child and I know there’s something different this time he has speech issues and autistic traits but because of the speech issues hes taken to biting and it’s becomin a massive issue at nursery and outside of nursery i feel so bad for him and do feel how you do sometimes and blame myself but I know I’ve dove everything I can with him and he is so loved and cared for I know it’s hard to not blame yourself for it but I promise you it’s not our fault we are amazing mums who have amazing children and we created them and it’s somethin to be proud of you’re not alone xxxx

  • Don’t ever blame yourself. I am goin through the same thing at the moment although assessments haven’t yet been put in place as my son is still very young. I have a older child and I know there’s something different this time he has speech issues and autistic traits but because of the speech issues hes taken to biting and it’s becomin a massive issue at nursery and outside of nursery i feel so bad for him and do feel how you do sometimes and blame myself but I know I’ve dove everything I can with him and he is so loved and cared for I know it’s hard to not blame yourself for it but I promise you it’s not our fault we are amazing mums who have amazing children and we created them and it’s somethin to be proud of you’re not alone xxxx

  • Hi, I saw your thread pop up and didn't want to leave you without a reply since you're sitting up at this time in the morning and obviously worried about all of this.

    I'm a Mum too, although my children are all a lot older now, and I know how hard it can be to want to help and protect your child when it feels as if no-one else is taking your concerns seriously. He's so lucky to have you in his corner, fighting for him like this, and it's because of you that your son will get through this, whatever his assessment results are. 

    Of course it hurts when you see him excluded from party invitations, it was a damned horrible thing for that parent to do and if we weren't on a public forum my language would be a little more 'colourful'! Some people are @#$% and at least you managed to protect your son from that particular example, it's just horrible that you had to. It's the last thing you needed to be dealing with right now.

    I wish I had some advice to give you regarding the assessment process but I'm afraid I know less than nothing about it, other than I imagine it's frustrating having to wait so long and not being sure if what your doing to deal with things is right or not. All I can say is what you probably already know but are understandably too tired right now to see clearly - your little boy has a Mum who will be there fighting his corner no matter what, and that's exactly what he needs. You just try to remember that, as the most important person your son has in his life, you need to take care of yourself for his sake! Time spent on you is not time wasted, you are important in this too.