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Newly diagnosed son,aged 3.5

Wolfy

Hi, I'm sorry, I don't know the anacronyms-I'll have to find help or brush up. And before understanding where and how I should post, I put this message under a reply to someone else.  I have had a really kind and helpful reply from Crystal12 and am now posting here - just in case any one else would like to comment, or in case there is any one else out there struggling like me.

My son, who will be 4 in Nov, has just been diagnosed and I just feel grief-stricken.  I am either sad or furious, I feel resentful of people we know, angry at God, and pretty much alone.  My son is the most adorable little baggage, but I feel such loss, loss of my dreams for him and us, wondering if he will ever communicate with us, if he will ever be able to participate in childhood rites of passage like Christmas, building a den with friends, or even not needing nappies.  Mostly I am terribly sad that where I once saw him, I now see ASD.  Does anyone else feel like this?  When will the pain become acceptance?  I feel guilty for seeing symptoms and not my son.

I am looking at various interventions (does everyone do this?) and wonder if anyone has any experience of DIRFloortime or Son-Rise?

Anyhow, you sound like a wonderful community, I wish you much love and happiness with the special children and adults in your lives.

  • Hey! My son was 4 in June and was diagnosed last November. For the first few months after, I was constantly on the computer googling for all kinds of therapies and any "real life miracle stories" that I could find.  My husband still hasn't accepted it and finds it really difficult to get his head round the fact that our 2 eldest children are fine and our baby isn't.  However, without boring you with all the details of our story, I will say this. I never believed my son would be able to tell me what he wanted for breakfast. I never thought he would use the toilet. I never thought he would fling his arms round his big sisters neck and cuddle her. He does all these things and a lot more. In the last 12 months we have seen a massive progress just by following advice from speech therapy and ensuring we include our son in everything even if we think he may find it hard going. I'll never get over the fact that he has ASD and will probably never live a "normal" life but what I have accepted is that he is a lovely, happy and healthy boy just the way he is. What else can we ask other than hope that our kids are happy whatever their needs are. It's us as parents who feel the grief of not seeing them as excited as others for Christmas, birthdays etc and not our asd children....  they don't give a stuff!! I'm not pretending that it's easy. It's not. Everyday I go through rituals with my son that others think are bonkers. Our whole house is bonkers!!  Anyway, there is a piece of writing that I find really helps. Please google it if you can. It's called "Welcome to Holland" by Emily Perl Kingsley. I read it nearly everyday, especially when I'm feeling a bit down. It puts a whole new perspective of raising a child with special needs. Good luck x

  • Hi Wolfy!

    I can completely relate to the feelings you describe. Our adorable son who is almost 2 1/2 has "provisionally" been diagnosed as being on the autistic spectrum. They say they are 80% sure but we need 2 further consultations before a formal diagnosis and that will take months.

    I have been going out of my mind worrying about what this will mean for him and his future. It felt like a bereavement almost. I have spent so long reading and researching it over the past month since the provisional diagnosis that all I have been seeing is symptoms and signs that he is different. It was ruining my time with him. So - this weekend we went away for the weekend and we took him to Cadburyworld and then to Thomas the tank engine land. He had an amazing weekend as did we and he was so excited. It helped me to realise that he is the same adorable little boy as before and he is so full of life. I have stopped analysing him all of the time and getting upset when he exhibits behaviours that fit the autistic spectrum. I have decided to leave this to the experts and focus on getting him speech therapy and doing all I can to help him on a practical level. My husband (and my mother) are in total denial so that is not helping matters, but the work colleagues I have spoken to have been fantastic. I have also started going to the gym at lunchtimes to help get rid of my anger and frustration and am trying not to look at other boys and comparing him or getting upset for our son.    

    I don't know how this will all pan out for our son or us as a family. I have only just joined this forum and I think it will help to share experiences. I'm still looking at interventions and supplements etc. I don't know of the ones you have referred to. I'll take a look.

    I think we just have to accept that the future is very uncertain and it will be different to what he had expected or planned for, but that doesn't necessarily mean it will be any less fulfilling for your son or your family. I'm still coming to terms with all of this myself. I'm just trying to look at things in a positive way as much as I can (but there are still tears!) I have avoided meeting up with my mum friends so far as I am not ready for that just yet. I will look at their children and analyse and compare too much, I'm sure.

    All the best.

  • hi wolfy Laughing

    dont worry about all the details, i guess most of them anyway i think most people do

    im sorry its hit you hard, but you will eventually find a way to deal with it, its always hard at first, especially if you arent sure what it means for your kids future, but once you get into the swing of it, understand some of the issues autism can cause etc it gets a bit easier

    when my partner was diagnosed, yes i saw asd, i still kinda do, i dont know how to disgintush him from aspergers, because who he is is very aspergery Laughing

    obviously i dont know what its like from your perspective or with having a kid with asd, but i do think if you get informed, read and research lots of info, you can eventually find a way to get through it rather than feel its going to take over your lives

    what i will say si, if anyone hasnt told you yet, just cause your child has autism it doesnt mean their life is over, it just means it will be a bit more difficult (due to social issues) and its just different,

    your the second person ive seen here with the same 'is their life over' feeling of dread, i dont think it is, and i know a lot of other autistics (many famous) will say that too

    you have to remember that tho he might not have those SAME childhood rites, he might not NEED them, and he might get differnt ones, ones that will fit with who HE is

    i think that pain will become acceptable and less when you get better education not from scaremongers or people who dont actually tell you how it really is

    im not saying autism is easy or a brilliant thing to have, but it isnt the end of the world either

    and im betting your son will have a brilliant future with his parents there to guide and help him