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  1. #51
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    Hi Cantwait1 and welcome It sounds like out sons were diagnosed around the same time. My son is 4 and 4 months now. Good to hear you have a supportive family.
    Don't listen to the mummy guilt. Sure we have to be teachers (and advocates and therapists and autism experts and all the rest it) for our kids but our most important job is just to be their mummy - which can be exhausting enough!

  2. #52
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    hi folks,
    hope i am posting in the right place. I'm a single parent, i have 2 boys, they have different fathers, Tyden is 10 and Braxley just turned 2 in Jan. Neither of my boys have actually been diagonsed with ASD, however 18 months ago, a psychologist suggested that Tyden my have very mild high functioning autism. I wasnt really concerned as he wasnt affected day to day. and i wasnt told what to do anyhow.
    My 2 year old is now showing quite a few signs. health nurse picked it up and i have started the ball rolling for assessment. but pediatrician appointment isnt until april
    With each sign i see im having more and more trouble dealing. only this week he has starting pulling cups out of the cup draw and lines them up on the bench, screams if they fall or dont stay where he wants. he started opening and closing his hands when things dont go his way, flapping his arms when thins gets extremee for him, like i have said no to going out side for about 20 mins then he starts to flap his arms.
    He doesnt talk. At all. repeats what i say, but then its only certain words. he makes a guttural noise which sounds more like rah-yah, to call his brother.
    I have tried talking to friends and family. My mother thinks he is just a regular 2yo who has slightly delayed speech, even tho Braxley doesnt play with toys...he lays on the ground and watches the wheels move with cars but thats about it.
    friends dont understand, i was in tears to a friend tonight and she just got upset with me, couldnt see why i was upset, icouldnt explain it and it made her angry, think she was happy when she had to go. and i cried harder for another hour.
    im scared, i worried, im guilty - i smoked when i was pregnant, have quit now, but i blame myself.
    i dont know what to do, i dont know what to expect, i have been reading alot which is probably making things worse.
    the idea that these moods and no communication wont end makes me depressed. he will spend hours a day just making an ahhhhhh sound. stops to take a breath and keeps going. Has a day of this maybe once a week. he has done it since he was just weeks old. it is driving me insane. i cant handle it and i lose my temper when he does it.
    i feel like a terrible mother and i dont know what to do to be better.
    sorry for going on, hope i didnt put you to sleep!

  3. #53
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    Tracym - welcome and I'm so sorry things are so hard for you atm. Whether or not your little boy is diagnosed with an asd it really sounds like you need a good support system around you right now. Even neuro-typical kids can run us ragged if we are doing it all by ourselves.
    It's great that you have found this group but there's nothing like meeting people who are going through the same/similar things. I'm pretty new to the world of asd myself - we got our diagnosis in October last year. We've recently joined a play connect group which is for kids on the spectrum but you don't need a diagnosis to join. Lots of church's run mother's groups or kids groups during the week. You don't need to be a member of the church or a Christian to join and a lot of them are free.
    You can start speech therapy and occupational therapy with out a diagnosis as well. Go to your GP and ask what they can do for you. For our speech therapy I know we got 5 free sessions per year covered by medicare.
    Some friends can be great and other can be rubbish when it comes to this sort of thing. It's hard to know which category they will fall into before hand. It's a shame that she can't just listen to you and support you even if she doesn't entirely get where you are coming from.
    My son makes a 'uungh' sound for hours on end. It just wears you down.
    Most importantly feeling guilty is normal but it's not going to help you or your sons. It would be nice to think that we could say - 'x+y+z=autism' and we could all make sure we didn't so x, y or z but it just isn't that simple. My own guilt is around having a c-sec and feeding my son formula but if we could go back and do it all again we can't know that it would make a difference - iykwim?
    Hope you are feeling better since you posted. Go gently with yourself.

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  5. #54
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    Hi again,

    Babynomad and Owl- Thank goodness my 'bad day' is finally over! Actually I had a series of bad days, about 3 in a row, I felt awful, but thankyou both to your support.

    Actually, since DS dx, I have been madly reading biographies on parents with children with autism. First it was Horse Boy, then A Friend Like Ben (both fantastic) and on Thursday I picked out a book from the local library on a mother who discovered harshly that the next day after giving birth, her baby had Down syndrome. Her story was so inspirational. I know its not autism, but a disability all the same and it gave me great insight and hope. Her little girl was truly beautiful, and although she didn't have obsessions, repetitiveness, and severe meltdowns, through her own challenges, she made me feel my boy is so close to normal, I wondered what I am complaining about... How the the cards turn so quick. One day sadness and the feeling of hopelessness, then full optimism.... Gosh, I'm a jumble of emotions....

    On another note, I am trying to get on to the path of toilet training. DS just turned 3, and I feel its time he learnt! This is going to be tricky, as we have no speech at all, and no way of explaining things like what’s going to happen, and “when this happens you go and sit on the toilet” kind of thing.
    In November last year, I had him sitting on the toilet before shower time as part of our routine. He actually looked forward to this, even though he never did anything on the loo. Then we moved, and the toilet is not part of the bathroom, in fact its right down the hall and the room is dark and looks unfriendly. I have let him see me sit on the loo, so he wasn't afraid of it. I have tried leaving his nappy off and then letting him wear jocks so he could feel the discomfort of the wet feeling. Today I did that and after awhile he wet, and I tried putting him on the potty, to which he went stiff and did not want to sit. So I tried him on the toilet, he froze and couldn’t wait to get off. Obviously he sounds emotionally not ready. But I need to get him there. How? How do I get him to relax about sitting down. Another thing, he seems to find it horrible to sit on plastic with no pants or nappy on. It must be a sensory thing. Any advice?

    Cantwait1- Hello! And welcome. Your lucky to have a supportive family, it really counts for a lot!

    Tracym- Wow, you have a lot going on. Firstly, I’d like to point out that I am no professional, but yes, it does sound like your little boy may have autism. Your not going to believe me, but, its not the end of the world. When my boy was diagnosed, my world came crashing down, and anyone who might have dared to say such a thing to me in the beginning, may even have been answered with a slap fair and square across the face. I’m not a violent person, but I was at boiling point, and so scared I was lashing out at my husband and my little boy. I felt awful. In fact, I was so scared and sad, I did some horrible things. So bad to the point I felt I should walk away as I felt my son would actually be better off and safer without me. So glad that part of my life is over. And I am in a much better place, but its nearly 12 months on. Its been a long road, but don’t let that scare you. Its different for everybody and it’s a long learning experience.
    Friends and family do not always understand. I am sick of the people who frown at me and tell me to give my boy a break as if I am picking on him, just when I point out to them an autistic trait to show them what I mean. If they are ignorant, they should shut up. You know your child better than anyone. Such friends should be supportive, and even if they do not understand, at least be a shoulder to lean on. I’d avoid bringing this up to that friend again, at least for awhile, if her attitude and lack of empathy makes you sad. Its hard enough to deal with without insensitive people to deal with as well. Let me tell you, your feeling and reactions are completely normal. Just ask anyone here. The only difference between you and the rest of us is we have had more time to heal.
    To be honest, there are days, and quite a few of them, where I am so proud of my Son AND his autism. He seems to have such a sweet and sincere disposition, so pure and truthful its beautiful. He’s an amazing being, even though I never saw it in the beginning. I’ve come a long way.
    Don’t blame your self. I don’t agree with smoking during pregnancy, but then again I was one of the lucky ones who was able to quit before pregnancy, and I do not pass any judgment. Though smoking may impact on asthma and eczema, I firmly believe it has no impact regarding autism.

    After my Son was diagnosed, I found that I have 4 cousins with autism, which was kept hush hush until then. Had I known this, I may not have had a child of my own or at least I would have used someone else’s eggs as I did IVF. But then I’d never have had this awesome little boy in my life, who really and honestly has changed my life for the better, I am a much better and more stable person. My son and his autism are a gift for me, and I would wish for nothing else. I honestly would never change him, not for the world.
    Things that parents of neural typical kids take for granted such as talking, awareness, making friends ect, are huge milestones for us parents of children with ASD, it makes the victory all the more sweeter. Their achievements and failures are all part of the package, and its what makes raising a child with autism, so special.
    I don’t mean to make it sound so easy. Its bloody hard, but so worth it. Your not a bad mum, just one in shock. The diagnosis process is a long and hard road, and probably the most difficult, so everybody here is here for you, whenever you want to chat. Or you can PM me if you like. Sorry for the ramble, but I feel your sorrow and I just want to reach out to you. Your certainly not alone.

    If and when you get a diagnosis, I strongly advise you to sign up with RDI therapy. Babynomad put me onto it recently after having great results with her boy. I've only just started and already seeing improvments. There is help, there is support, and there is funding to help with therapies. Things will get better, I guarantee it. Try not too be so hard on your self, your only at phase 1.
    Last edited by mysweetboy; 09-02-2013 at 19:40.

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  7. #55
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    Oh my sweet boy that was such a wonderful inspiring post , I have nothing to add , i agree with all you say xxx

    Welcome ladies xxx

  8. #56
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    heeeeerekittykitty is offline My babies, my cats ....ahhhh , bliss !!!
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    Default ASD parents chat and support

    Hi beautiful ladies .

    Everyday I promise myself I have to come on hub hub more and this thread more . It never happens it gets so busy but I have to try harder !

    Do any of your children with autism go to daycare ? How often , how many hours and how did they go ?

    Please Help :-(

    my son started for two hours per day Tuesday and Wednesday . I know it's not much but this is killing me . I stay outside with my daughter just walking her around the block in the pram.

    He has no play skills . No skills with other children . He just wanders around aimlessly and it breaks my heart . I know the whole point of daycare for him as per his therapists is to prepare him gently and slowly ones the next few years for school , help him be away from me and eventually help him with skills and development but I just can't believe I actually done it . I always swore as long as he was non verbal I would never put him in kinder or school as how will people know he's needs :-( ? Well what if he is always non verbal ? Ill never send him to kinder or school ?

    He turned 3 a month ago . I'm losing hope he will ever speak .

    Anyway this is abit all over the place I am sorry .

    I would just love to hear if your children went to daycare and if they improved and you think it was of benefit .

    I'm so sad about the whole thing . I just want him home With me :-(

    Thanks lovely people xxoo

  9. #57
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    heeeeerekittykitty is offline My babies, my cats ....ahhhh , bliss !!!
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    Default ASD parents chat and support

    Ps / I forgot to mention he has an amazing support person giving him one on one help The while time he is there.

    I couldnt have done it without her she's a living angel and is so beautiful with him. But it's still just stressful and really getting me down.

  10. #58
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    Hi there herekittykitty , I know how you feel. I wouldn't put my son in daycare at all for so long as my gut said no. But when he turned 2.5 years old he did an hour a week at occasional care. He seemed happy to go . Then I put him one day a week at daycare and when I look back he hated it. He was biting and crying and I was so glad to get him out . I tried there for about 6 weeks and it just seemed like the wrong place. I felt sick all day about him being there . When he turned 3 we got the diagnosis , around 3 years and 5 months ish we moved to a country town. I put him in preschool and haven't looked back . He loves it and they are so good with him. He goes two days a week and since being there has toilet trained himself ( just turned 4) and speaks . Not just repeating but asking questions ( not always listening ) but he is learning conversations are a two way thing. One part of him improving is RDI therapy and the other is a good supportive preschool for our son.

    I really think if he seems to cope ok then try to see it as his first step out into the world. It has to happen for him to learn and to be outside his comfort zone. He will get used to it. You sound like such a lovely mum but you also need a couple of hrs to yourself ( I know you have your girl but a bit of time alone with her when your more relaxed about your son in daycare will be lovely.

    I hope he begins to start saying some words. Honestly when my son started saying things it really was incomprehensible babble and repeating things off the TV and saying it all in the wrong place . But slowly he is asking things and its wonderful . I waited so long for it. I hope it happens for you . Xx

    I am dreading school and thinking of holding him back a year , I don't know how I will cope if he goes main****** , I will worry all day about him and his happiness .Its very tough. All we can do is let them know they are loved to bits and that home is a safe place for them to just be who they are.

    I hope he and you can relax into it , I know it's bloody hard xxx

  11. #59
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    Hi everyone,

    Welcome to all the new ladies and hi to all the regulars. I hope everybody is well


    Its been a little while since I've posted in here and I've made a few unsuccessful attempts so here goes!


    My DS has just started prep at a main****** school. We have challenges. He was fine on his very first day, even excited! (took me completely by surprise) and 2nd day was good too. Unfortunately, after that its all gone dowhill. He had his first meltdown already and the staff were wonderful with him. I feel we have chosen a supportive, ASD friendly school and they are trying eveything they can. Even so, he still struggles. I understand that for most kids with ASD it sometimes seems like one step forward, two steps back. This is how it is for us at the moment.

    He is stressed about the change, even though we have tried making the transition as easy as possible for him. He went to all the transition days last year so he's familiar with staff and the school, he's in a small class with 4 of his best friends from kinder and lots more kids that went to kinder with him. He doesn't qualify for any government funding because he is not struggling intellectually but his behavioural issues are quite challenging. The school are trying to use the aides and support they have (Including parent helpers) to assist him. His meltdown the other day lasted for 2 hours and the mum that was helping on the day had to sit with him and make sure he didn't run out of the building until he calmed down. This meant that she couldn't assist the teacher with the other 22 kids in class. He doesn't know how to self-regulate and we are currently working with our O/T to teach him.


    I was extremely stressed all holidays thinking about school and now that we have started school, the worries feel very real. I applaud the good days though. Today is probably the first day I haven't been in tears when I've dropped him off, since his 'bad days' started. He was ok with me leaving because I had to tend to the sick goldfish at home. He clearly put his goldfishes needs before his own and was very brave in letting me leave. He was even smiling when he waved me goodbye. I was on cloud nine when I left because I knew he was going to be ok today

    Herekittykitty, I understand your worries. I went through a similar thing with my son, when he started kinder. He was 3, but luckily he could speak, so we didn't have that added stress that you no doubt must be feeling in terms of communicating his needs. With us it was severe separation anxiety and lots of tears and clinging. He did 3 yr old program and 2 years of 4 yr old kinder. He only really started to relax halfway through his 2nd yr doing 4 year old. It was a long road, but we eventually got there! I was so proud of him last year, I could cry! Now we are kind of starting all over again with school, and unfortunately, I feel life will be the same or similar each time a new situation arises. It will be full of ups and downs until he eventually learns some coping strategies. This may take a long time and its kind of an individual thing. Each one of our precious darlings struggles with something. My son doesn't like lots of noise and too much change. There are other things too, but they are the main stressors for him. Another child might struggle with frustration to communicate verbally for instance, and another with gross motor skills. Usually its a combination of things, but all struggles nonetheless.


    I agree with what babynomad has said. I think that the support of the pre-school, daycare or school is a HUGE factor. Without it, its an uphill battle. It sounds as though you have a great support person on board. That's wonderful!! My son had a terrific kinder assistant who was his angel and that made kinder a good place for him to be. Don't underestimate the significance of that support person. It may just be that daycare isn't the right environment for him and maybe kinder is more suitable? Would you still be able to have your support angel there?And I know from experience, its easier said than done, but try not to let him see that you are anxious because it might make him anxious too. Kids are sooo perceptive when it comes to our feelings. I'm a terrible actress, so I struggle with this, but I try and think happy thoughts when I drop my son off in the hope that he picks up on my confidence in leaving him at school.

    The most important thing at the moment is for you to be confident that he's in good hands and to try and convey that feeling to him. Check in with the staff and your special support person about how he is going. sometimes us mums get more stressed than our kids! Try and see if you can go home instead of walking around the block. If you don't feel he's in good hands, find another place or perhaps just wait a while before you take him to daycare.

    I'm sorry for such a long-winded post and I don't know if I've helped at all, but you are in my thoughts.


    I hope everyone has a great week-end. Take care ladies! xx
    Last edited by ILOVEBRODY; 15-02-2013 at 09:45. Reason: typos

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    Default Re: ASD parents chat and support

    Kittykitty, i can't reply right now and I will when the kids in down for a nap but I just wanted to send you big hugs and let you know about my son's experience of going to daycare xoxox

    Sent from my LG-P705 using BubHub


 

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