Aspergers/ASD support thread

Dummie_2

Hello Everyone

Feeling down. Just want to post some of the things going round in my head in the hope that puttting them down will help ease them a bit.

Called our HV yesterday to ask her for her thoughts on Aidan. Up to now, no one from the NHS has ever said we are actually looking at autisim (only the private SLT). I asked her if she thought maybe it could be something else because I'm spending a lot of time looking into autisim and preparing myself for the day when it's officially confirmed so I don't go into shock but was thinking what if it's actually something else and I'm wasting my time looking into autisim? I think I sense some denial here as well on my part.

She confirmed that judging by the signs that Aidan is showing we are definitely looking at him being on the spectrum. She also told me that apart from the previous referrals we have also been referred to psychologist and Occupational therapist. I understand that all these people fall into the MDA team but the list of people we need to see is growing and even though I'm grateful to see everyone we can so that a full clear picture can be drawn up and am really happy that we're in the system and that the ball is moving I don't know if I'm ready for this. Am I ready to face the truth? Am I strong enough to cope with this? But having said that. I know that no matter what I MUST face it and I MUST cope and I MUST fight on. There is absolutely no other way. No hiding.

I also told the HV that I've been feeling down recently. I don't think I'm full blown depressed but I do recognise the signs. Really scared. Really really don't want to go back down this road. Don't want to fall back into my big black hole. I know I did the right thing to speak up about it sooner rather than later and she will coming to see me on Wed when Aidan is in nursery to talk about my treatment options. Throughout the last time I never took any medication. I tried to fight it and to recover by going to counselling sessions and PND support groups instead and I did start feeling better in Sept-Oct last year but the past couple of months have been hard what with moving house, selling our business and with having to face autisim again after having pushed the thoughts away when no one was listening to me, it all seems to be going downhill. I've also been exposing myself to new situations recently so that has brought up lots of insecurities and unhappy memories from the past.

I've also been reading that autisim can run in families. I've been looking at myself and honestly think I'm on the spectrum but OMG I don't even want to start going down that road or even think about it. Not because I'm scared or anything but I don't want to add on the extra stress and waste time in looking into it when I think all my time should be spent looking into Aidan's case.

OK. Bless you if you've come this far. That's everything off my chest now. Feel slightly better with having put this all down. Sorry for going on and on. Don't even know if the above makes sense :rotfl:

Nicki

Dummie wrote: »

Hello Everyone


I also told the HV that I've been feeling down recently. I don't think I'm full blown depressed but I do recognise the signs.

I've also been reading that autisim can run in families. I've been looking at myself and honestly think I'm on the spectrum but OMG I don't even want to start going down that road or even think about it.

QUOTE]


Hi Dummie

Really sorry you're having a bad day. I'm thinking about you though and sending you good thoughts.

I know its overwhelming, but the process you are going through at the moment is the hardest part. It feels like you have to see a hundred different people and they all say things about the child you love, and spot things which you think are perfectly OK and base whole theories on them! Added to this you're scared and upset and trying to come to terms with the fact that bad news may be just round the corner. All I can say is that it does get better once the diagnosis comes, whether that's a yes or a no - so try and hang in there and console yourself with the fact that this is the only way to get Aiden the help he needs.

The bit I've quoted really struck a chord with me. I had really bad PND when my DD was diagnosed, and I thought then that all the things they picked up on with her I had too - poor eye contact, not wanting to socialise, disliking crowded spots, going into my own little world, etc. Actually though these were all symptoms of the depression, and not a sign I was on the spectrum at all, and now that I'm no longer depressed, I don't have any of them. It does help me to empathise though with how DD feels sometimes.

I know you don't want to go down the meds route but try to find some time for yourself in all of this, and ideally someone to talk too when times get tough. It will make things much more bearable.

Hope you feel better soon

Js_Other_Half

Be kind to yourself - you've had an awful lot to put up with this last few years. Don't panic about whether or not you are on the spectrum - even if you are, it won't make an difference to you as a person.
The sooner A is properly assessed and diagnosed, the better. I've known children not have an official diagnosis until they've left primary school - which means a lot of their educational opportunties have been missed or badly delayed

<hug>
.

louidog

Dummie you are a star mum and don't you forget that! You are there for Aiden and there for whatever he needs. You are having a bad day and need a gentle hug and some reassurance that all will be ok....and it will be have no worries there. So here's the gentle hug being sent from me to you!
Make some time for yourself to sit and try to relax

Kimitatsu

Dummie

Dont beat yourself up! Being a parent is one of the most rewarding, frustrating, hardest, joyful things any parent can do.

My DS1 was listed as possibly in the Autistic spectrum (they thought he had ADHD) and I sobbed for two days in private! We all want our children to have a happy fulfilled life where they are not "different" to other children and have a wide social network. The reality is that every child has a difference whatever it is and they have to run through life coping with that difference, the fact that he comes to you for cuddles is a really good sign. It means that he can distinguish emotion and he can obviously relate to his feelings.

Also the fact that he turns to you constantly is a really good sign. Please remember that the autistic spectrum is absolutely massive, ranging from completely autistic to ADHD, dispraxia, eating issues the works! If you think he has any of the following I would suggest having him allergy tested for intolerance (not allergic) to dairy and wheat products. Sometimes by cutting these things out you can see a huge difference in their behaviour.

Take some time out for yourself, this is a huge black cloud in front of you - many of us have been there looking at it and feeling that we are the only one in the world feeling this way but you are not - honestly! check out the national autistic website and find your local co-ordinator, they are fabulous! Whatever the final outcome sometimes just having someone to bounce things off that has been there and done that helps.

Do you have another family member you can leave him with for a cuople of hours so that you can get some relaxation in a couple of times a week? Even if its just a walk on your own sometimes it helps to clear the head and put everything in perspective.

Take care

K
x

Savvy_Sue

And a hug from me too ...

You've been through some of life's most stressful life experiences lately - having a baby, moving house, selling a business - and now you're finding yourself in all sorts of new situations, and it's very challenging. Nope, let's not say challenging, it's downright difficult!

When the HV comes, you know she won't be pushing drugs at you. She might suggest going to the GP, but you can ask her about seeing a counsellor and about what help and support she might be able to access for you - HomeStart, SureStart - to help you in all this.

And OK, maybe autism does run in families. I'm sure my FIL is on the spectrum, and DH used to be most peculiar, although he did improve at University (I've known him a long time and would have run a mile from the idea of marrying him when we were in the 6th form! :rotfl:) I'm not sure I'm normal either - but hey, who wants to be normal? - and my brothers can be a bit 'odd' about certain things as well.

It doesn't matter if you're not the perfect mother. I know I'm not. But then I haven't got perfect sons either (yells downstairs to get some washing up done ...)

You are the BEST mother in the world for your DS. And he is the BEST son in the world for you. No-one could love him like you do. No-one ever has, no-one ever will. Just as I am the best mum in the world for my Aspie lad, and while he'd never admit to reciprocating my love for him, I think he finally recognises that he could do a lot worse ...

Dummie_2

Thank you so so much for your support and encouragment. I'm not so down today but to be honest I am still feeling rather flat.

I've just re-read this whole thread through from the beginning. It's been 6mths already. Time really flies. I'm reminding myself just how far I have come in this journey and of all the hills I have had to climb and the battles I have had to fight. But most important of all, problems that I was facing then are now no longer problems.

I now have a lovely, brilliant and supportive health visitor. I have a GP who listens to me and Aidan is now in the system waiting to be seen by all the specialist who needs to see him. That's a far cry from 6mths ago when my then HV told me not to label my son when I mentioned autisim to her and our GP was only willing to refer him for a hearing test.

Today we received an appointment to see orthoptics. It's on Wed 4 July so just over 3wks away. It's our very first appointment so it's another step forward.

I've been taking him to groups so that he can socialise with other toddlers but each time we're there my heart aches because it highlights all the differences in Aidan.

To those of you whose LOs have an ASD. When did they learn to talk? I know those on the spectrum can range from not being able to talk at all to being very well verbally developed. How do I know how Aidan will turn out? He's 2.5yrs and still not talking. Is it something that only time will tell or are there signs that will give me some idea? He's making noises and have said some words before (but only once) are these good signs? Sorry, I'm beginning to go on again. There are just so many questions. But the scary thing about ASD is that no one can tell how they will turn out when they are older isn't it?

Oh, one last question. Do autistic children tend to have difficulties with groups of peope? At Aidan's nursery at the end of the session they have to all sit down in a circle. Aidan gets very stressed about this. He was like this at his old nursery as well. He'll get very upset and would only calm down if on the lap of one of the teachers. But having said that. He has no problem with walking through the room when it's full of people

Thanks again to you all. You are all truely great. Especially those who have been with me right from the beginning following my journey. Offering your support and advise. Sharing your experiences and giving your time. :T

Hugs to all of you.

Savvy_Sue

Very quick response because it's late and I've had a lot of late nights just lately.

And I can't really remember when DS1 started talking, but it was quite late. However, when he DID start a) he didn't stop and b) he spoke in whole sentences. It was as if he hadn't had the words for saying anything worthwhile.

Groups: I wasn't really aware of him being stressed by groups, but he wouldn't conform. EG nursery head asked me accusingly if I sang to him, because he would never join in singing with the other children. I did sing a bit, but he didn't like music, so probably not as much as I might have done otherwise. I just said "Maybe he wants to sing his own song?" Which is what turned out to be the case - and why should he sing the same song as everyone else all the time?

Hugs.

Nicki

Hi Dummie

As far as I know there isn't any way to predict whether your child will talk and if so, at what age. Mt DD is 6, and her speech is minimal, though she can communicate in other ways. At her school which is a special school for ASD children, probably about half of the children talk normally, and another large proportion have some speech but its not age appropriate, and they have problems initiating and maintaining conversation. The remainder use other methods such as signing or Picture Exchange. There are only a very few who can't communicate in any way at all.

With groups, this is likely to be because he has some sensory problems (very very common with children on the spectrum)

Can I recommend two excellent books which may help on these two issues:

More than Words by Fern Sussman (which is about the stages of communication for ASD children and ways to help them move up. It is suitable for kids Aiden's age)

The out of Sync child by Carole Kranowitz. This deals with the whole range of sensory issues and explains why children may find it hard to sit in groups, queue up, etc and also a whole range of other problems they may have which you might not have noticed, together with ideas about how to make them less sensitive.

Hopefully you can ask your library to get them, or borrow More than Words from Aiden's SLT once one is assigned, as this one is expensive. The other one is just a normal paperback price and you can get it from Amazon.

Dummie_2

Today has been an amazing day. I really want to share with you.

Aidan has a Little Touch Leap Pad and some activity cards that came with it as well. Each time you change the activity cards you have to press a couple of buttons which lets the Leap Pad know which activity card you have inserted. Aidan loves playing with this but sometimes doesn't press the necessary buttons when he switches between cards. This means that he ends up touching say a pig on his card but the Leap Pad will name it as a blue circle. Usually when this happens he doesn't bat an eyelid and will just continue playing which led me to believe that 1) he didn't know the name of the object he was touching and 2) he didn't understand what the Leap Pad was telling him.

However, the past 4-5 days he's been showing signs of understanding by creating a fuss with the wrong name was given to the object he was touching. So I sat down next to him and asked him one by one to touch the alligater, the cat, the elephant, the kangaroo, the monkey, the pig and the rabbit. HE GOT IT RIGHT EACH TIME :j I just can't believe it. All along when he didn't seem to be taking anything in or he seemed to be just randomly pressing buttons he was learning all along and more importantly he is making the necessary associations.

I'm so excited. I have 'tested' him hundreds of times before but usually he doesn't even acknowledge I've spoken to him. This has really opened my eyes.

Also today, when he was playing with a musical toy and listening to the music, I sat down next to him and tried to get involved and to try to gain some interaction. It didn't work so I picked up a talking toy of his and started playing with that. Suddenly he bagan to push my hands away from the toy but I continued to press the buttons to which he then switched my toy off!! It was so funny but more importantly he had acknowledged I was there and had acknowledged the noise I was making which was obviously interrupting his enjoyment of listening to his music. Most times I can sign, shout, jump and dance around him but he wouldn't acknowledge my pressence.

Just had to share my joy with you. Thanks for reading.