Diagnosis

As we sat in the small office of the psychologist and she told us our daughter had Autism Spectrum Disorder – mild to moderate, it wasn’t a surprise. It was what I had been expecting. But still. The reality of it; to see it in writing in the report and the knowledge that this was something our beautiful darling daughter would have to deal with for the rest of her life broke my heart.

I’m so sad and so angry that this is her fate. She is amazing and strong, born fighting. She has her whole life in front of her. I want her to have every opportunity available, I would give her the world on a platter if I could. She deserves the very best life has to offer.

I understand that we caught it really early. I know she will have the the best chance with early intervention. I know there are so many services and resources out there to help her. I get that. However right now, right this second, I am so pissed off. It’s not fair. I don’t want her to have hurdles she needs to overcome, I don’t want her to have to struggle to ‘fit in’. I don’t want her to be in this bubble that she is in that we have to learn to penetrate.

I worry about her future. I worry about whether she will be able to make friends, will she be picked on? Will she need an aide at school? Will it be obvious that she is different, that she thinks differently? Will she be able to live independently as an adult? Will she fall in love? Will she even understand love? So many ‘what if’s’ that no one has the answer to right now.

So I go through the motions. I contact all the different agencies that she will need to access for assistance. I fill out all the different forms; for funding, for early intervention , for wait lists. I follow all the steps that I am told to take control of the only things I have control over. I nod and agree with people when they say how great it is we got it early, how fabulous early intervention is. And I do agree. That doesn’t make it better though, it doesn’t make it easier. It doesn’t take away the worry or the fear or the guilt.

Just like knowing that she has ASD doesn’t make her behaviour any easier to deal with. Until we start therapies I am flying blind, metaphorically hitting my head against a brick wall as I struggle to communicate with her and get through the copious daily meltdowns. The guilt I feel when I lose my temper is intensified as I know she can’t help her behaviour. I struggle to get through every day, twelve hours without a break, without any help (apart from my husband, but he is at work through the week). The stress and the worry, the fear, wears me down. I love my daughter but she is relentless, both of us frustrated that we can’t be understood. It’s overwhelming and exhausting and most days end in tears.

I know this is not our ‘forever’. We will get through this, we will get help, we will learn. We will break down these barriers between us and our child. It has only been a week since diagnosis. We are still struggling with this new chapter in our lives. I know we will move forward, with hope and strength.

In this moment though, I am exhausted. I am sad, I am angry and I am scared.

 

 

47 comments on “Diagnosis

  • Emma @ Family Life Central , Direct link to comment

    The best thing you can do, and it sounds like you already are, is love your daughter and support her in every way. One of the most important things though is to make sure you look after yourself – you can not look after your daughter properly if you neglect yourself. Stay strong xx

  • Annaleis , Direct link to comment

    I so know how you feel. The anger I felt was the worst. Just remember you need time to process all your emotions. Baby steps forward until you find what works for your family. Celebrate the successes – no matter how small because it wont be long and they will add up. Again here if you need to chat, Annaleis xxx

  • Suz , Direct link to comment

    I know this feeling so very well. Be in action and take control of stuff when you can (you are doing well to be doing that already), and rest when you need to. You might find these posts useful http://theiloveyousong.blogspot.com.au/2010/05/there-is-something-we-want-to-share.html#.UMlmJeSdeuM & http://theiloveyousong.blogspot.com.au/2010/05/kaleidoscope.html#.UMlmUeSdeuM & http://theiloveyousong.blogspot.com.au/2011/10/10-ways-to-help-family-living-with.html#.UMlmguSdeuM
    We are almost 3 years past diagnosis now and all of the “before” seems like a lifetime ago. Wishing you well. Suz

    • Hesitant Housewife , Direct link to comment

      Thank you so much for the links Suz. Have read the posts, they really echo how I am feeling at the moment. Especially like ‘Ways to help family living with ASD’, would love to share that on my Facebook page at some time, if you don’t mind xx

  • Elephant's Child , Direct link to comment

    ‘I am exhausted. I am sad, I am angry and I am scared.’

    Of course you are all of those things. You are also a warm and loving fighter. What better family could your daughter have been born into. You will have your bad days as we all do – but you will triumph.

    Hurting for you, hurting with you. And sending so so many good wishes through the blogosphere to you and all your family.

  • Hesitant Housewife , Direct link to comment

    Thank you EC. If nothing else I know I will always fight for my daughter, tooth and nail.
    Feeling, and much appreciating, your good wishes. xx

  • Tracey @ Bliss Amongst Chaos , Direct link to comment

    Reading this, I was transported back almost five years ago. The worry, guilt, fear, pain was all mine too. I was exactly as you are.
    My mother in law had been telling us for a while that she thought my son had autism, but I thought she was mad! All I knew of autism at the time, was children that didn’t communicate, weren’t affectionate, no eye contact, and my son did all of those things. But I knew he definitely was different.
    So I started looking into it. And the more I looked into it, the more I realised she might be right. When the time came for the actual diagnosis, it wasn’t a surprise to hear the words “Your son has Autism Spectrum Disorder.” But having it confirmed made it all the more terrifying. The paediatrician said to me “I have to say, you are taking this very well,” and I told him that it had been expected, but I sobbed the whole way home.
    So I have been where you are. And it does get better, I promise you. Once you get in to early intervention, it will do wonders. We had a whole lot of other issues with my son as well, such as sight issues, but to look at him today you wouldn’t even know it was the same boy! He is just about to finish his first year of school, and it has seriously been the best year of his life in regards to personal growth. I am amazed every day.
    I’m not going to deny it will be a hard slog, with lots of therapy, and you doing lots yourself at home, but you will get there.
    Big hugs from someone who completely understands!
    xxx

  • iSophie , Direct link to comment

    What an ordeal, I hope you look after yourself, as it sounds like you are already on the right path to helping your daughter. There is a huge community to support you all to find the right balance.

    I actually have a tiny bit of fear that my youngest has ASD, even if mild. He is only 2, so time will tell.

    • Hesitant Housewife , Direct link to comment

      Thanks iSophie. It’s so hard to judge when they are toddlers isn’t it? Toddlers by nature are quirky. Hoping the best for your son xx

  • Kim@FallingFaceFirst , Direct link to comment

    MASSIVE hugs to you through the computer. Of course you’re exhausted – diagnosis sux. Don’t be too strong – let yourself take some time to grieve. Grieving the expectations you had for your little girl are important, so you can pick up and get on, like you will, as we all do. We had a different kind of diagnosis over here this year, but the feelings and the effects, so very similar. I feel for you. Look after yourself x.

  • Eleise @ A Very Blended Family , Direct link to comment

    That must be really hard to deal with even though you know what you are doing is right. Both my sister and sister in law have autistic children and my advice to you is the same to them, accept help when offered and remember to put yourself first often because you need to be the best you can be. Big Hugs

  • Kirsty @ My Home Truths , Direct link to comment

    I’m feeling for your right now. I have gone through this twice now and you can never be completely prepared for all the emotions that come with a confirmed diagnosis. I have written a few posts on my blog that you may find useful. I have a special needs page with a lot of them on there plus I wrote this one when we received our daughter’s Aspergers diagnosis last year – http://myhometruths.com/2011/07/its-all-so-surreal/. I’m sending you virtual hugs and please don’t hesitate to get in contact it you want to find out anything more or just talk or vent to someone who has been there too.

  • Kelly HTandT , Direct link to comment

    I think that your anger and your sadness is justified, your little girl deserves more than a lifetime of struggle. I don’t blame you for feeling exhausted and scared, I think most parents in your shoes would.
    Stay strong xx

  • Carly@Charlie&Bella , Direct link to comment

    Hello, I just discovered your blog through ‘About a Bugg’ and I’m sorry to read your news. We went through the exact same thing with my daughter (then aged 18mths) just a year ago and I could have copied and pasted your post word for word. I’m sure you are getting lots of support both online and from friends and family, but add my name to the list. If you ever need to talk, have someone just listen, or have any questions I might be able to help with, please feel free to get in touch. Will find you on FB and Twitter and link up with you there too xx

  • Kylie , Direct link to comment

    Hello Jane! Lovely to *meet* you last night!
    Looks like you have been dealing with some stuff – it must be a relief to have answers though, and now you can continue to provide your daughter with all the love and support she can ever want for.
    On another note – I also have a Milla – mine turns three this Friday!
    xo

    • Hesitant Housewife , Direct link to comment

      Hi Kylie, thank you. I can’t believe you have a Milla too, it’s not a common name! I hope your Milla is enjoying her birthday today xx

  • Twinkle in the Eye , Direct link to comment

    Like you said, she is amazing, she is strong and she was born fighting. She will continue to do the same just in her own unique way. Learn to speak her language and teach her to speak the language of others. She is still your special, beautiful girl with the world at her feet, she will teach you a great many things xo

  • Denyse Whelan , Direct link to comment

    Hi again…wow! You are having to roll with the changes aren’t you! I came to comment about finding people like Suz & Kirsty & you have! Kate from KateSaysStuff wrote a very very angry post when her young son was diagnosed. I can tell you now, that the support she had from tweeps & bloggers was amazing. Her story is on her blog and she is one of the women who oversees the Autism blog space with Renee from. About a Bug and Sharon who is TwitchyCorner. The Internet support can be your friend for a while!

  • Alicia@ Alicia's moments of gratitude , Direct link to comment

    Only just found this post, what a huge moment in your lives.
    I can only begin to imagine the stress, pain and hurt this causes you.
    I do think that you are doing an amazing job and your little girl is very lucky to have you as her Mummy.
    One day at a time, one step at a time, you will learn together, grow together and find out so much about life, love and who you are.
    Sending hugs xoxo

  • Engineer Mum , Direct link to comment

    Your story resonates with me. I have a similar post coming up. Thankyou for sharing this step, this early step in a journey. There are many Autism Parents online, I am one, not too far along the journey from you. I would be happy to walk part of the journey with you. 2012 was our year of finding therapies. Sending hugs.
    Rosana

  • Michele , Direct link to comment

    Another mother of a child with autism – take it from one who knows SELF CARE is the key here. You are no good to anyone especially your daughter if there is nothing in the tank. This ‘extreme parenting’ takes courage and energy. You need to stock up and keep topping up the tank in whatever way you can as often as possible. Its a long and at times difficult and draining ride – parenting is hard enough as it is without adding special needs and all that entails all that including the many myriad decisions and all that F&&&**R%^ing paperwork! Hang in there and do something immediately to look after yourself and get a break and build yourself up again – think endurance race not sprint. One day (or one hour or one minute) at a time. Much love and understanding.

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