need help with accepting daughters have autism

Dear Boozy

I have an autistic daughter and for the first 5 years of her growing up, I refused to accept completely that she was both autistic and "what had I done wrong!"...

I had counselling which didn't go entirely to plan, but did enable me to see her firstly as my daughter and secondly that she was some-one that made me see the world differently. I heard a story once about a mother who described having an autistic child as planning to go somewhere on holiday but ending up somewhere completely different. This "different' sometimes is more difficult, strange and occasionally makes you wonder where you could have gone, but you can't go back to "the other place". Acceptance of your situation and your daughter who have autism is hard, mainly because other people expect a "norm" from all of you. I ended up on anti-depressants (ADs) not only because of my stressful domestic life but also because neither me or my daughter were good sleepers. She is now on Melatonin (a godsend!) and I have a low dose AD, because it helps me to get a good nights sleep to cope with every new day. I have days where her behaviour honestly drives me insane and I try to have to set boundaries (which don't always work), and I am grateful to have a very supportive and patient partner. 

Lastly, I would recommend and excellent book which helped me and others who look after my daughter, written by an autistic child Ten Things Every Child with Autism Wishes You Knew. This is both heartbreaking and uplifting to read and should be compulsory to all parents, carers and family members. 

Regards and goodwill,

Hdan

Wow, that is just so lovely to read SonnyDays. It must be so rewarding for you, and lovely for him to have you, and great for his parents to have a little break. This is what all families with autism need!

I work as a behavioural assistant in a school with children with autism, and on the weekends I take a boy out into London (he has severe autism and ADHD.) I am so often struck by how strong the parents and families are of the children I work with...I imagine it to be so overwhelming with all the information that is out there on autism, and so hard to come to terms with. 

I write a blog about my experiences with the boy I work with on the weekends. http://mysonnydays.wordpress.com  Lots of parents and other autism professionals write about their experiences with children with autism so that may help you to hear other people's experiences. 

I hope in time it gets easier for you. 

Thanks Susie x

Nothing you have said offended me as Ive had some of the same feeling as you, I think when I came to terms with the fact my daughter had autism things started to get easier.  

    it is hard work to have a child with autism and you have 2 so its hard ,   I hope things start to easier soon and you get the help you need.

Thanks to you all for your advice. i want to point out that it is me who has the problem im the one who wants to push them away I am in a constant battle with myself I know I am severely depressed and this affects the way you think but I can't stop thinking negatively. However I will take the advice and read the stories. PuzzlePiece where can I learn more about Buddhism. sorry if my being honest offends i really wish i wasn't like it maybe then i could find peace

I posted the following on the Newly Diagnosed Autistic Child thread, maybe it will help you too boozy:

Maybe this will make you feel better, it's something I saw on another forum:

"On Saturday I went to the “New Look at Autism” talk at the beautiful Sheepdrove Eco Centre in Berkshire, UK. Among the speakers was Rupert Isaacson, author of the wonderful book “The Horse Boy” http://www.horseboyfoundation.org/book-film/the-book/about-the-book.html.  The Horse Boy is a story of how the father of an autistic boy takes his son all the way to see the shaman of the Raindeer Tribe in Mongolia in the hope that his son may be “healed.” Rupert had long recognised the benefits of shamanic healing (yay!) and he had also seen how well his son Rowan responded to his neighbour’s horse, Betsy. Much of the trip was made on horseback, which is massive feat considering that even taking his son to the supermarket had become a nightmare for Rupert and his wife. Rupert said that in his opinion, clues to an autistic child’s gifts could be found in their “stimming” – the repetitive physical movements that autistic children often make (stimming is short for “self stimulation”).

For example, Rupert had a child on one of his Horse Boy camps who flatly refused to get on a horse; instead he just wanted to play with the water in a pond. Rupert allowed this and some clever soul watched over the child. The boy appeared to be slapping the water, gathering it up somehow, then letting it go, then he would fling his arms up into the air, only to then go back to rapidly scooping up water. He constantly repeated this process. To the onlooker, it looked like madness. But the man that was watching over this child took photos, and amazingly, the photos actually captured images of water sculptures that the child was making. He was actually shaping the water into images – of dolphins and horses for example, and when he created a pleasing image, he would fling his arms back in happiness, then he repeated the process all over again.

Rather than seeing autistic children as damaged and in need of healing, Rupert believes they are very special, so special in fact that he calls them “Dreamweavers,” as Rowan’s condition led Rupert to achieve many of his dreams. Rupert’s views on stimming are that they are a method of creation, which are intentional. Either they clear energy – for example shaking hands around the middle clear energy channels within the child’s energy body, or they create a vibrational resonance, an energy, that is needed for some reason. Therefore, when a child arranges, say, sticks in a particular pattern, they are creating an energetic frequency, which either they themselves, their parents or the world at large needs for some reason. Rupert said that autistic children have a greater link to spirit than non-autistic children, and in fact most have shamanic tendencies. Rowan is obsessed with animals, particularly endangered species for example.

We heard a story from another speaker, Suzy Miller, (author of the book Awesomism http://www.awesomism.net/), about a little girl who loved collecting anything to do with birds, and then was seen in front of a hedge at school talking to a hummingbird which was hovering right in front of her – for enough time as it took the whole playground to gather around her. Rather than damaged, Rupert asked us to perceive autistic children as unique, special and beautiful, and to understand that they have often come to heal their parents – and quite possibly the world, rather than needing healing themselves. One of the struggles Rupert had with Rowan was his physical incontinence. Until his meeting with the shaman, Rowan regularly soiled himself, which put his parents under huge strain and worry. My sense is that he had such problems as he was largely unaware he even had a body that defecated. Because autistic kids are more spiritually aware and are concerned with the bigger picture, going to the toilet is something that just does not appear on their radar. For spirits, as we know, do not have bodies, and do not have to cope with bodily things. This view was met by Suzy Miller who refused to call children autistic, instead referring to them as “children diagnosed with autism.” She believed that such children only incarnated into their bodies as far as their hearts. (A professor of psychology told me recently that it takes even “normal” children up to age seven to fully incarnate into their bodies). So an autistic child does not even fully inhabit their body!

Suzy was an amazing lady who had developed a psychic link to the autistic non-verbal children she often worked with in her role as a speech therapist. One child in particular, a four year old, taught her telepathically how to heal him - and other children! She asked him why so many autistic children were coming in now and was told by this tiny tot that they were coming in answer to our request for a new type of human, as we had done quite a good job of stuffing the world up ourselves. How amazing is that?? She backed up Rupert’s suggestion that parents of autistic children should pay close attention to the things that their children do. For example she told us one boy, Tommy, played music over and over, driving his parents almost mad. One day his mother realised that there were messages to her in the music he was playing, answers in the songs to her own questions! Tommy now has his own Facebook page and in return for your details will provide you with a song which will speak to your heart. How beautiful is that? If you are a parent with an autistic child then I strongly recommend both the books mentioned above."

Hello.

I used to struggle with depression/anixety etc very badly.
I can understand how it can be hard accepting things do not seem normal to you.
And to me personaly sounds like you need some inner peace.
And I encourge you to question the rest of my answer as much as possible.

I believe that buddism is and will continue to change my life.
It teaches us to let go of the little things and accept everything and everyone for exsactly who they are. When our mind is calmer, we let go of the past dont woe on for the future think in the now, think about this moment. How are you now. Not good?
Take time to sit and breathe but on some calming music shut your else and think of nothing else. Ensure your personal needs are met.  

1.certainty - security

2. Variety - doing different things

3.Love/ Connection - the coneection between your and your family is there (doesnt matter how)

4. Your personal significance - accept who you and your family are

6. Your personal Growth - Challenge yourself work on something

"relax nothing is under control"

"We are not here to change the world, The world is here to change us"

"I can and I will"

Once you let go of exspectations and comparison you could be happier.
If it makes sense look it up. If it sounds like rubbish disregard it.

I hope you find some peace

xxxx 

Hello.

I used to struggle with depression/anixety etc very badly.
I can understand how it can be hard accepting things do not seem normal to you.
And to me personaly sounds like you need some inner peace.
And I encourge you to question the rest of my answer as much as possible.

I believe that buddism is and will continue to change my life.
It teaches us to let go of the little things and accept everything and everyone for exsactly who they are. When our mind is calmer, we let go of the past dont woe on for the future think in the now, think about this moment. How are you now. Not good?
Take time to sit and breathe but on some calming music shut your else and think of nothing else. Ensure your personal needs are met.  

1.certainty - security

2. Variety - doing different things

3.Love/ Connection - the coneection between your and your family is there (doesnt matter how)

4. Your personal significance - accept who you and your family are

6. Your personal Growth - Challenge yourself work on something

"relax nothing is under control"

"We are not here to change the world, The world is here to change us"

"I can and I will"

Once you let go of exspectations and comparison you could be happier.
If it makes sense look it up. If it sounds like rubbish disregard it.

I hope you find some peace

xxxx 

Hi - I think that the attitudes of others (non autistic) makes things much more difficult.  You need to accept your situation as it is when it comes to other people + their attitudes, otherwise you'll go round in circles getting regularly upset + your children need your support.  What's really important, pleasing others?  As other posters have said, it wd be a gd idea to meet other parents with autistic children + have someone to discuss things with, such as a councillor.  It's not easy, society isn't autism-friendly or even understanding.  In the end we can care too much about what others think but what's more important?  Good luck with everything + if you think you may be autistic then there are online questionnaires you can complete which give some sort of indication, if you want to pursue it further.  We do understand how hard it can be for our children + ourselves + do empathise.

I totally agree with you sharon,  I think a lot of it is learning to ignore people's reactions because who care what they think , your daughters are the important ones and  hopefully you can come to terms with their diagnosis . hope counselling helps you.

Hi,

Do you have any contact with other parents who have children with autism? That can help, chatting with other parents and maybe your children taking part in activities with other children with autism. If you're not in touch with people, then it is worth looking at what's available in your area. A good starting point is your local branch of the NAS, but there may also be other groups in your area.

If you feel embarrassed about your children in public or with family, I think partly you need to grow a thick skin and decide that your children are the important ones and that it really doesn't matter what others think.

Hopefully some psychological help/counselling will help you deal with how you feel.

My eldest was diagnosed at 8 even though I made my concern known when she was 2. My youngest was about 3 ish I think due to the fact that I already had a daughter on the spectrum. Its knowing how to accept it that's the issue I don't know how, it's that strong in me. I sometimes wonder if I'm on the spectrum somewhere.

Hi there can I ask how long your daughters have been diagnosed for? My daughter is 8 and she was diagnosed about 2years ago, I know exactly what you mean by saying they way they act makes you feel shame and guilt but I think that's only natural and ive felt the same myself at times .

But think for me the thing that made me feel better about things was that my daughter is one of a kind she only acts the way she does because she sees the world differently and she trying to make sense of it, and I have to say I think the reason I did feel like you do is because I was in denial that she was autistic , but i have to say once you start to accept it things get a lot easier , I hope this helps I certainly dont have all the answers and it's a long road but I honestly wouldn't change my daughter now it's who she is . Good luck and don't be so hard on yourself .