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A little bit lost.

Flyinpink-Rachy

Hello folks. *Sorry this was such a long post in the end!!*

This is my first post on here so I hope I'm putting it in the right place. My son is currently being assessed for ASD, the paediatrician has told us that she will be saying he is on the autistic spectrum and we are close to the end of this part of the process. My son is very clever, a whizz with maths especially and loves everyone. He is just generally a cracking little chap.

However, I am currently struggling with a couple of things and I'm hoping I'm posting in the right place to get some help or maybe even just to vent a little bit. For the most part we deal and adapt to work with him to make sure he is ok and that we're all happy. But, having been going through this for 3 years now I am a little lost on what to do. The things I'm going to type when said out loud don't sound so bad I suppose, or at least I think that must be the case for the one or two parents I've mentioned it to have laughed it off, but to me, my husband and especially my son they are big things.

He worries about death a lot, this morning is we walked to school, he is dressed as a Tortoise for world book day, a lady told him he looked cute. After she walked by us, he was immediately worked up because he didn't want to look cute. He said "If I look cute everyone at school with fall in love with me, and then they will fight each other and then someone will hurt me and then it will be RIP *name*." I reassure him as best I can, but what do you say to that? When he gets upset he says "Just kill me now, you would be better without me."  And varying other versions of that sort of thing, he worries other people will die a lot and he obsesses about him dying. He's 6! Surely that's not what a little one should be focusing on?! He doesn't read or watch or play games that are too old for him, he doesn't come into contact with a lot to do with death, mostly because I feel at 6 he should only have a basic understanding of it.

School called me in yesterday because he keeps trying to escape. Everything will be fine then something will happen and he needs to not be there any more. It's like a switch has been flicked. Sometimes it's a quite calm version where he will go to the school office and ask them to call me. Sometimes it's a plan to escape school that is more like an adventure, but most of the time it involves him being very upset and trying to leave the classroom, he gets his coat and that's it he wants out. Now his teachers are very good, but there's 30 kids in his class, one teacher and one teaching assistant. (As well as another lady who is one to one with another little one.) They simply can't be watching him all the time enough to prevent him from wandering, I think it would be unrealistic to expect them to be able to as I understand all the children need care and teaching. But at the same time I am worried that one day he is going to walk out of that school and no one will notice. All he has to do is walk through their main hall and push the handle on the door and he's out. And quite frankly that scares the wotsits out of me!

He hates winning things, and can barely tolerate being praised. If he loses at something he is usually quite happy, but if he wins and you get excited for him he gets angry. But I can't not praise him when he does something good or great. He keeps telling his teachers he is different and not wanted and no one likes him. He tells them he isn't special he just doesn't fit.

My son is a face scratcher, when he gets worked up he doesn't know what to do with himself. He grits his teeth, clenches his fists and then scratches his face. He threatens to bite people, mostly me but doesn't actually do it. And he's a big boy, not fat just tall and broad shouldered so when he does that it can be quite scary.

One other problem I have to most people I think would sound daft. He loves everyone, he wants everyone to be his best friend. He talks to everyone. And in part that's simply lovely. But it's also very scary. We talk to people when we're out and about, he invites them to our house, not just children mostly adults. I have a huge worry that no matter what I say to him about stranger danger he would easily walk off with someone. The other side of loving everyone is that when someone doesn't react in a positive way toward him, or hurts him or just doesn't want to play is that he gets really worked up. He then questions what's wrong with him, "I'm just an idiot!" "I'm stupid!" That sort of thing.

I am tired. My husband is very supportive and we both want the best for our son. It just feels like I am running out of places to turn where I can get some information or help. I have the Carol Grey Social Stories, I have membership to Twinkl and use some of their SEN things. I do everything I can to try and help him and to guide him and help him grow and understand things. But at this point I don't know where to turn.

He has seen so many doctors now I've lost track. I know he's seeing the paediatrician again in a few weeks. I went to see our normal GP recently with him to see if we could get any extra help and she told us to contact another place, but we've already done that. I feel like I have to deal with this on my own (with my husband of course, but he works full time so doesn't see everything and doesn't experience it all. It's usually me who gets called into school etc as I'm the one who does the school run etc.) And it's exhausting.

I don't know what I expect from writing on here, as I said, maybe I just needed to vent a little. But I worry I am not enough for my son, because I have so many questions and worries. And I know I can't be there for him all the time, such as school etc. I didn't even know about this website until recently and then was too shy/scared to post anything. But after being called into school again yesterday I needed to say or do something.  My son has very supportive staff throughout his school. He and we are very lucky I know that much. But I worry because I can't do more and I can't fix things for him. Because that's what us parent do, right? We make things better with a kiss and nice words!

Thank you for reading. I didn't mean to type so much! Have a good day.

Parents

  • Hi

    It sounds to me like you are more than enough for your son and very proactive. I do understand where you are coming from though because I feel the same myself. My daughter is displaying signs of autism. We are currently at the start of the diagnosis process. She has a severe speech and language delay, some sensory processing issues and a combination of the both causes severe anxiety meltdowns. When she has these meltdowns, I feel completely helpless. There is no reasoning with her, we just have to ride it out. Like your son, my daughter scratches not herself but whoever is dealing with her when she is going through a meltdown. It's heartbreaking because I feel like I should be able to recognise when she will have a meltdown and avoid it or be more supportive to her when she goes through them.  But they're unpredictable. What could trigger one today will not be an issue tomorrow.

    She is in mainstream school, nursery class. She is coping with the work that is set and is happy to be amongst the other children but obviously lacks social communication skills due to her speech/lang delay. She currently has one to one support every morning but ideally needs it all day. Without the diagnosis and a statement, it would be hard for her school to get the funding needed for full time support. We are literally fighting for everything! Has your son's school mentioned the need for extra support for him in class, if they feel he needs its?

    I also understand when you mention your husband is supportive but it all falls upon you to deal with it. That is EXACTLY how I feel. I am the one who deals with school, Dr's, paediatricians, occupational therapists, speech and language therapists, scouring the internet for ASD information and resources and it is totally exhausting.

    However, it is utterly rewarding and every little achievement really means something. This week her speech therapist who she hasn't seen since before Xmas said she's seen huge improvement in her speech and language skills and is ready to move on to the next stage. That made my week!

    It sounds to me like you are doing amazingly. Parenting is hard enough without the further challenges things like ASD can throw at us. Keep doing what you're doing!

Reply

  • Hi

    It sounds to me like you are more than enough for your son and very proactive. I do understand where you are coming from though because I feel the same myself. My daughter is displaying signs of autism. We are currently at the start of the diagnosis process. She has a severe speech and language delay, some sensory processing issues and a combination of the both causes severe anxiety meltdowns. When she has these meltdowns, I feel completely helpless. There is no reasoning with her, we just have to ride it out. Like your son, my daughter scratches not herself but whoever is dealing with her when she is going through a meltdown. It's heartbreaking because I feel like I should be able to recognise when she will have a meltdown and avoid it or be more supportive to her when she goes through them.  But they're unpredictable. What could trigger one today will not be an issue tomorrow.

    She is in mainstream school, nursery class. She is coping with the work that is set and is happy to be amongst the other children but obviously lacks social communication skills due to her speech/lang delay. She currently has one to one support every morning but ideally needs it all day. Without the diagnosis and a statement, it would be hard for her school to get the funding needed for full time support. We are literally fighting for everything! Has your son's school mentioned the need for extra support for him in class, if they feel he needs its?

    I also understand when you mention your husband is supportive but it all falls upon you to deal with it. That is EXACTLY how I feel. I am the one who deals with school, Dr's, paediatricians, occupational therapists, speech and language therapists, scouring the internet for ASD information and resources and it is totally exhausting.

    However, it is utterly rewarding and every little achievement really means something. This week her speech therapist who she hasn't seen since before Xmas said she's seen huge improvement in her speech and language skills and is ready to move on to the next stage. That made my week!

    It sounds to me like you are doing amazingly. Parenting is hard enough without the further challenges things like ASD can throw at us. Keep doing what you're doing!

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