Parents with children who have autism

Discussion in 'Special Needs Support' started by jessicasmum, Jan 7, 2017.

  1. happycupcake

    happycupcake ‘Mrs Hudson took my skull.’

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    Don't feel guilty for how you feel. It's natural to feel overwhelmed by this, it isn't something to take lightly. It isn't a negative thing as well, but it can be daunting even if you already suspect it.

    I have had at least six sessions a few years ago privately with acupuncture and my GP also gave me a few sessions as she does it too. Currently I am having weekly sessions privately and the acupuncturist comes to my home to do them as I'm more comfortable here. I have had four or five I think, I can't remember. They are useful. I struggle with agoraphobia so getting outside is hard, and getting outside by myself is harder. I haven't been out by myself for months and months until a week ago today, where I went into town on my own Saturday afternoon and handed out some flyers to help out a friend of my husband. Being on the spectrum myself, my social skills are rather limited, and I generally can't stand being in any social situation. However, I dealt with it and spoke to literally hundreds of people in the space of about an hour. Brief interactions are easier for me, but this wasn't an easy task! Before the acupuncture I wouldn't have done this. I still have panic attacks but I think I am dealing with them better than before, and although I do still take medication, I don't always feel I have to, it's more out of worry if I don't take it my anxiety will bite me in the backside. Anyway, it's definitely worth trying out. Some places do it on the NHS but this is hard to come by.

    I'm fine with her diagnosis. I completely expected this outcome. The thing I'm pleased about and somewhat relieved about is the fact she said she wasn't sure whether our daughter is more mild or moderate because she's too young to determine this for the time being. But this to me means she isn't severely on the spectrum, so hopefully with time and the right approach, she should be able to catch up in her learning and should be able to lead a pretty regular life. This is my only concern! I want her to lead as regular a life as possible, I don't like to imagine her having severe struggles in her life. So this gives me confidence.
    I love her little quirks and weirdness, she wouldn't be her without them.

    I think every child is different and will enjoy and learn different things in different ways. The national autistic society gives some good ideas for toys. Our children love cars (they enjoy spinning their wheels), they love the thing where the cars travel down levels (I don't mean a garage, although they love this too, this is a wooden toy where the cars go in a downward zigzag, I can't remember what it's called!), they love blocks and lego because they enjoy making towers and houses, our daughter loves dolls and engages in imaginative play well with them because she pretends to feed them and put them to bed, she also likes dressing up. They both love technology and can use tablets easily, you can find lots of apps designed with autism in mind. They like looking at books but don't understand them. They like puzzles sometimes, although our daughter prefers to take them apart. They love bubbles and playing with water, they also enjoy drawing although more our daughter. Our son is obsessed with cars and train tracks, he also likes the children's BB guns... although this requires ducking on our part lol!

    I don't know if this is of any help.

    Quite random but... our daughter, when walking in the wind will walk backwards so the wind blows in her face and our son literally screams in excitement when he sees a fly or a moth or any other small flying creature, accompanied by chasing it and then trying to play hide and seek with it... anyone else? Oh and our son is also obsessed with ants and will cry if he sees an ant which then disappears, crying out "ant, where are you ant? AAAAANT!", we are thinking of buying him an ant farm
     
  2. smurff

    smurff Mummy to Emily and Harry

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    Hi, of course it's going to hit you hard, like I've said before I knew my daughter was probably autistic but when someone else said they thought it to if felt like I'd been hit by a ton of bricks and then when they said about her needing specialist school it completely finished me and I also cried for days. I initially thought what life will she have, what would happen if me or hubby wasn't around. I soon learned not to think about the future as no one knows what will happen. At the end of the day no matter what she's still our princess and I love her unique ways. Infact I envy her sometimes, she's in a world of her own and she's always happy and smiling and very loving, she knows nothing about the horrible things that happen in this world and I often think she's the lucky one. As for the specialist school, I think I've said before how amazing it is and I'm so happy she's there and not In mainstream.
    We've already been told she's autistic but the official testing for us starts next month but the testing will be done and official results back in about a month. We also have her genetic testing back in August.

    If you go on to Amazon site and put in autistic toys or autistic aids there are lots of things there to buy, my daughter loves the long stand up tubes filled with water and fake fish, it changes colour and has lots of bubbles, apparently fish are very calming for children and it certainly is for my daughter.

    I finally went docs a few weeks back and I have an anxiety disorder which has caused OCD. I'm on sertraline daily and awaiting counciling. I'm noticing a difference already, I've still got a very long road to go but I feel calmer and I'm thinking more rationally.

    Hope you feel better soon x
     
  3. smurff

    smurff Mummy to Emily and Harry

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    Hi jessicasmum how are you doing?
     
  4. jessicasmum

    jessicasmum Mum of 3

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    So sorry yet again for my absence :(

    Happycupcake: Thank you :)
    That's great that the acupuncture has helped you and that is amazing that you was able to go out on your own to hand the flyers out that's a massive step :D you must be prouf of yourself.
    I too would say i had a form of agoraphobia because my dog phobia stops me from going out, I only go out in the car to places I never walk and we have only had a car since October so a long time of not even doing that unless we got a lift or taxis. I wont even go out walking anywhere with hubby :( but after years of debating about hypnotherapy I finally did a session on father's day, i was emailing the therapist woman a week before hand and was saying about all my issues not just my phobia and she said to do the phobia first. I'm not sure if it's worked really because I've not put anything practice but hubby thinks he could tell I was different calmer when i came out and also when we go out for drives he thinks I'm a bit different. I think maybe it might of helped a little but I don't feel totally over my phobia like I feel I might be ok near certain dogs like I think maybe my sister's dog which is a springer spaniel and maybe my brother in law's dog which is a mongrel, I'm thinking more more less fierce dogs possibly but I'm pretty sure i wouldn't be ok near staffs and german shepherds etc.
    That is my fear also that if my daughter was classed on the severe end of the spectrum but even though she's not been diagnosed yet I do feel that she isn't severe, if I would have to say i feel she's more moderate because I dont think things are mild enough because she isn't talking yet which I'm hopefully that she will because she'll say random word now and again even her playgroup teacher said last week that she said "no" to her so she is showing signs that she will talk. Do you mind me asking how old your daughter is?
    I've noticed with toys/items that interest my daughter and digital numbers and letters, she has a truck thing that has a little screen on it that's musical as well that lights up digital figures which is the only toy she'll play with, she also loves when the titles go up at the end of a program on the tv and obsessed at going up to the screen when me have sky sports news on, our washing machine is digital too so she keeps pressing it that and the microwave which she is now tall enough to reach. She likes touching my tablet screen but I dont think is at the stage yet of knowing how to work apps but I'm thinking about buying her a tablet for her 3rd birthday in September.

    Smurff: Thank you for asking how I am, sorry for now messaging until now. I'm feeling ok at the moment but still having my moments which I think i will always will do. I do find myself crying sometimes at the most silly things which starts me thinking about my daughter like I was on my own with my youngest and peppa pig was on and I felt upset the thought of that we had our daughter then our youngest 2 years apart so they could play together and with my daughter not paying my youngest any of attention it sort of hit me because i know its a kids cartoon but made me think that they might never play together like I dreamed of.
    Can i ask does your daughter ever play with your son or does she not show him that much attention?
    Also do you mind me asking have you been told where on the spectrum your daughter is? Or do you have a feeling where she is like me thinking mine is more moderate?
    Is the genetic testing you've had suppose to take long for the results?
    Glad that you have noticed a difference with you being on the medication, i hope the counciling works also.
     
  5. jessicasmum

    jessicasmum Mum of 3

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    Sorry for all my spelling mistakes and wrong words I've put in my post hope you are both able to make sense of it.
     
  6. smurff

    smurff Mummy to Emily and Harry

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    hi, i know the heartbreaking feeling your feeling thinking your children may not play together and to be honest its hard to see. there is also 2yrs between my daughter and son, my son tries all the time to play with his sister but if shes not in the mood she will scream at him and push him away and say she doesn't like him. my son is extremely helpful and likes to pass his sister a biscuit and juice sometimes and he will run to give it to her and she will snatch it and tell him to go away. I feel so sorry for him as his face just falls but before my daughter can say anything to him I jump up and down and give him a round of appluse and say thankyou to him and hes very helpful and I try to get his sister to say thankyou aswell.

    My son is used to the way his sister reacts now and when he is older we can explain why she reacts the way she does. As for the playing, its getting better but its hit and miss and has taken a while. if my daughter is in a good mood and very cheeky mood they will run around and laugh and play together a lot and they have just started to play ball together aswell. when me and my son pick my daughter up from school he runs to her and tells her hes missed her and gives her a massive hug. If my son isn't with me she always looks for him and doesn't like going out without him and he is very attached to his sister, I'm sure he can sense his sister sometimes needs time on her own, if ever my son has a biscuit or juice he always has to give his sister juice and a biscuit, he doesn't like her being left out and follows her every where.

    As I said before, I can understand your worry and upset but if your children are anything like mine they will play together and have a very special and understanding relashionship , and when they do play together believe me it is all the more special to see. they both love each other so much.

    And yes the genetic testing does take a year for results to come through, we were told before we started that we would not know anything for a year, that's if we do find out anything.

    I don't know where on the spectrum my daughter will be yet, we got her school report last week and she is doing really well and is emerging on every lesson and is just starting to go to mainstream classes and group teaching. I have her next peadiatrition appointment in august so we'll know more then, but she has now started to do 60 piece jigsaws in about 5 mins without looking at a picture for refrance plus it is a 3d jigsaw, I couldn't compleat it in 20 mins and gave up in the end so I don't know how she did it.

    I'm with you on the crying at silly things. I was watching ben and holly the other day and holly broke her wand! I was in tears and then when she fixed it I was upset again because I was so happy for her. I honestly would cry at anything but since taking the medication thankfully that seems to have stopped now. I still have bad moments and I'm hoping in time the tablets will start to work better but I think they take a few months to kick in. I am to worried to go counciling at the moment but in time I may come round to the idea?
     
  7. jessicasmum

    jessicasmum Mum of 3

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    Awww your son sounds adorable how he is with your daughter :D That's really good that they have started to play together at times, i really hope that this will be the case also with my youngest 2.

    Gosh a year for the genetic testing!

    Wow 60 piece puzzle in 5 minutes. She sounds like she is doing so well at her school. I would love for my daughter to go to the autism unit near where we live but I think they have to be more high functioning and i wouldn't at this stage say that my daughter comes under that category. Is the unit that your daughter goes to cater for all levels of autism do you know?

    Got my daughter's first speech therapy appointment since the assessment through for 2nd August. Still nothing from the paediatrician side and her playgroup have heard nothing about which I'm so annoyed as this is surely going to hold her diagnosis up, she finishes playgroup for the summer holidays tomorrow as well.

    Can i ask how you deal with the holidays? Like do you plan activities/keep to a routine to keep your daughter busy? Just a long time the summer hoildays and really worried what my daughter will be really disrupted being use to going playgroup and dreading September when she goes back because it's all changed, she will have different nursery teachers, a different room, want them to wait outside rather than just coming straight in and also starting half an hour later at 9:30, she's so loving her playgroup time at the moment and i dont want all this change to ruin everything.

    I know your feeling about not wanting counceling at the moment i keep refusing it when i go see my CPN or whatever he's classed as, I've had CBT and other things before and just not worked for me, i feel i have too much on to deal with this, I've got 3 kids, 1 is a baby 1 got autism and now I've found out my Mum has got cancer which is incurable.
    I hope your tablets do start to kick in soon, maybe might need a bit of a higher dose if not.
     

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