daugter only just diagnosed

Hi kelzbelz, I certainly can identify with how you are feeling.  My four year old son was disgnosed with ASD three weeks ago and we are still trying to get our heads around it.  This is even though we knew in our hearts before his assessment concluded that he had autism.  I think parents are wrung out even before they get their diagnosis as the process is a very long and difficult one with so much red tape to get through.  I realise they need to be sure before a diagnosis can be made but I feel a lot of our concerns were explained away whereas we knew there was more to it.  I feel frustrated at this as they say early intervention is key.  This is all stress even before you are told they have autism and the implications of this.  My son has a two year old brother and I feel upset on behalf of my four year old that he cannot play and interact with him.  He is also non verbal.  This is the first forum I have signed up to and also my first comment but its a comfort to know I am not alone!  I have now accepted things - my beautiful son is no different to the child he was three weeks ago and I now see his diagnosis as a positive.  If he did not get it we would still not know what was wrong and now we can get him the help that he needs.  Hopefully this is the same case with your daughter, as you now know, you can get her the help she needs.  Please don't feel guilty for feeling the way you do.  One minute I am fine and the next I'm in tears but I'm telling myself its completely normal - I also don't have pregnancy hormones to cope with!  We may have just started the fight for our children but we will get there - at least I know other people are going through the same thing x

Hi Philippab,

Thank u so much for recommending the sibs org. I will get in touch with them......I have been to a club type thing with the kids, but my 7yr old asked if he was there because he had problems too like his sister....wee soul!xx

Hi squirrel,

things sound very hard for you at the moment, and I'm sorry that your family relationships are under strain because of it. I just wondered if you were aware of the Sibs organisation?

http://www.sibs.org.uk/

It's a charity which supports siblings of disabled people. They might be able to suggest something for your younger child. 

Thanks,

philippab - mod

Hi banana,

Fab name........lol....think I'm going bananas at times....hee.hee.....Great advice...think I will look in2 trying to get a befriender for my wee one. As for keeping a relationship alive....I will try harder as u are so right....at the end of the day it's very important! On a day to day basis it's easy to lose sight of what's really important as u get sooo knacked. Thank u for ur kind advice!xxx

Hi squirrel,

Feeling for you too. Can yu join a local autistc support group. I so get what you mean about burdening friends, but you need somewhere to offload. We can't do it all singlehanded. What about a befreinder  either for your 10 year old , or to support the younger one.

I understand the sadness you feel that the siblings just have to get on with it as the other takes all your time. Try and pull in as much support as you can, and make the best of the evenings with your husband. Its so easy just to spend the time on your own after a busy day , but if you can keep a relationship going it will help. I  am still in a relationship, but I wish I had worked harder. I feel very alone even after 20+ years of my marriage - i spend far more time with and talking to my aspie son.

Wish i had done it differently.

Thank u sooooo much Crystal12 for taking the time to reply to my rant........sometimes it helps just letting all your thoughts out. Your kind words are much appreciated!x

hi Squirrel - trying to keep it all together can tear you apart.  It's v dfficult trying to reconcile all the differing needs in a family or with friends.  The stresses can be enormous.   I used to feel like I was cracking up at times.  I was a single parent when my son was diagnosed at just under 3 yrs old.  That was over 20 yrs ago now.  The things that helped were :  the local authority advising he shd attend one of their nurseries for part of each wk, being statemented to attend a school for children with asd + being offered an amount of respite care via social services.  All these things help, as long as you get them.  Reading posts on this site, it looks like some parents are having a rotten time of it + are having to battle all the way for anything.  Empathy + autism don't really go together. My son hasn't empathy but he does recognise to some degree when people are upset now.  However, things are always centred around his needs, that won't change, altho can be modified a bit over time as understanding develops more.   It must be confusing with the asd + the diabetes sometimes....sorry but can't give advice on that, maybe someone else will come along who can.  bw

Hi Everyone,

I am new to this site.......so just thought I'd introduce myself and see if anyone identifies with what I'm saying. Here goes.....my wee girl is 10 and has had type 1 diabetes for 6 years......we have wasted such a long time being told her problems were diabetes related or we needed to be firmer and stop her controlling nature. Health issues have muddied the real problem...the wee soul has aspergers too! Thanks to someone relating the story of their Jekyll and Hyde child....very quiet, but good at school and then a total nightmare when they came home.

What a challenge trying to get your child diagnosed....as if your home life is not challenging enough you have to fight and push to get a diagnosis...and then realise this is only the start of your journey. At times it is difficult to know what is the ASD....what is the diabetes and what is just her playing up. It is like having a wee onion and trying to peel the layers back to try to work out what is what.....lol... It is hard living with constant meltdowns and total oppositional behaviour. I feel as if my brain is going to explode at times....but what else is there to do. Over the last few years my lovely hubby and I have never argued as much......and I feel sad when we end up bickering over this constant strain. I feel so sad and rubbish that my little 7 yr old has to put up with the constant turmoil at home. The more I try to fix things for him, the more inadequate I feel as I know at the moment I don't know how to make things better for him or my family.

 I have tried to placate my child on my own as she only wants me, but I know this is not the answer as in protecting the others I am quietly going mad. The suffocation of my child's need for me constantly is overwhelming and her constant negative thoughts overwhelm me. She is quite nasty to me and is totally oblivious to my feelings. Her anger results in constant screaming.....small requests are opposed at every turn. If I'm sick she tries to pull me out the bed, if I lock my door to get changed she tries to kick it in. Does this ring a bell with anyone. I can not fill her need to be constantly entertained 24/7.

I feel it is overshadowing my life and alienating me from others......I try not to bug friends by telling them things that seem weird and strange and stuff they don't understand or can relate to. In my effort not to pull people down with me, I feel as if I am very alone......... Hopefully things will improve soon:-]

Dear Crystal12,

Thank you for your kind reply and words of advice, which I have re-read a few times to make them sink in.  I really appreciate hearing of your experiences and getting your advice and will certainly try to do as you suggest.  It is a very hard time and the feedback of others who have been through this war is invalauble, it makes one feel less alone, although it is a stark truth that strangers have more connection with me now than the people I have surrounded myself with for years.  I am shocked and hurt by some friends and family responses to the diagnosis - the worst being silence or glibness, but perhaps when something so big happens, your life changes and parts of your 'old life' fall away.

Thank you again for your words on seeing my son as an individual, seeing how the ASD affects him and how I can be there for him to help, and on schooling - I will try my hardest to give him all the chances he deserves.

hi Wolfy - know exactly how you feel, even tho it's a long time ago that I felt that way.  I can relate to the feelings you expressed in your post, such as feeling grief-stricken + only seeing the asd.  But....as you also say, your son is adorable.  Please remember that 1st + foremost you have a little person here who needs his mum + who also has asd.  He has his own personality, just as those without asd have.  How will he develop??  Perhaps those who diagnosed him gave or can give you some pointers.  My son didn't talk till he was 5, but he cd write a number of words before then.  He cd understand simple commands + was a practical problem solver before he cd talk.  He's always had a good sense of humour!  It takes a while to adjust to these changed circumstances + to understand autism in depth. You need to change your way or thinking to take into account how autism affects your son. The social side, not to be underestimated, will prove difficult.  I think everybody looks at various interventions.  Personally I think it's best to stick with the tried + tested, otherwise parents cd, unwittingly, put their children + themselves thru a lot of heartache for no gain.  This site is a goldmine of tried + tested info so consider relying on it for at least a while.  An appropriate educational environment is vital, in my opinion.  A good school can make all the difference.  Check things out in your area.  Please don't feel guilty, altho I've certainly felt that way at times.  It's a big learning curve, getting your head around it all. Knowledge is power + will help you + your son.  Take your time + take time with your son - there's no need to hurry right now.  Look after yourself, as well as him!

Hi, I'm sorry, I don't know the anacronyms-I'll have to find help or brush up. 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.

Hi corysmummy,

welcome to the forum, I hope you find it supportive and helpful, especially as you must be going through a hard time with the recent diagnosis. You might want to start a new thread in the 'parents and carers' area to ask about DLA - that way more people will see your question.

philippab - mod

hi my son got his diagnoises on thur hes 5 in oct im not sure were to turn tbh hes great wee boy i wouldnt have him anyother way i always thought he was autistic but was told it was nothing to worry about and now its in black in white im in shock even though i new i feel guilty but releived that hes going get right help but i have no clue about dla or should i apply for it can anyone help xxx

hi kelzbelz - the diagnosis can take some time to adapt to, even if you suspected beforehand.  My son's an adult now but the 2 most important things, in my opinion and in no particular order,  are getting the right educational environment for your child and always remembering that they are an individual 1st and foremost.  When my son was 1st diagnosed all I could see was the autism, but there was a little person there, with his own personality and as you adjust it's important to remember their personality and how autism affects it.  This will vary from individual to individual.  We were fortunate that we lived in an area where my son could be educated at a school for children with autism.  This helped him greatly.  He would not have managed in mainstream, even with support.  You need to know what is the best educational environment for your child, not just what is on offer.  It must be a difficult time for you all - a real mixture of emotions - a lot to adjust to.  Time helps all that - you can't rush your emotions.  The nas site is full of info which will be helpful to you so please have a good look! The discussion boards are also helpful in many ways.  Wish they'd been here when my son was growing up.  About being a happy family - please don't worry about being happy - there's no reason to feel guilty about that!  All your children will benefit from a happy family life.  Just do what you already do, which is doing the best for your children's needs and remember to look after yourselves as well.

bw