It’s all so surreal…

Image courtesy Clare Bloomfield (www.freedigitalphotos.net)

Today is surreal.

Yesterday, I was nervous, anxious, a little bit nauseous, stressed – you name it, I felt it. It was the day of Miss 5’s paediatric appointment to assess her development. We had been waiting for this day for months and now it was finally here, I was wishing it away.

Maybe we were imagining everything, maybe it was all learned behaviour, maybe it’s just because she is a little sensitive 5 year old girl…

We went into the appointment not knowing what was going to happen. I had my suspicions, as did my husband, but we were unsure whether we would come out with any answers at all.  As the paediatrician herself said, this is a complicated case.

She reviewed all those reports we had painstakingly obtained from the occupational therapist, speech pathologist, school counsellor and her class teacher. She observed Miss 5 talking away with the stuffed animals at the play table while we went through all our concerns. She asked us specific questions about her behaviour, interests and social skills. She ticked off a few lists and carefully wrote all our responses in our daughter’s paper file.

In the end, complicated as she is, my daughter showed enough behaviours to be placed on the milder end of the autism spectrum. She has been diagnosed with Aspergers Disorder which lies on the same end of the autism spectrum as my son’s diagnosis of high functioning autism but differs in a number of subtle ways.

I knew this was possible.  I had prepared myself for it. I had rationally and objectively accepted this was one possible outcome. Yet, I still could not stop the tears falling or the sobs coming when she said it.  As I write this, the tears are still falling.

It will take me a while to be able to think about the diagnosis without being overly upset about it. I have grieved twice before with the diagnoses for my son, I know it will get better. However, as prepared as you are for it, knowing that your own fears for your child are real and not imagined, that really stabs you in the heart.

So, today, I have been trying to process it all and get my mind around what comes next. Once the paperwork comes through confirming the diagnosis we can seek an appointment with a psychologist to help with my daughter’s anxieties. We can also apply to FaHCSIA for funding under the Helping Children with Autism Package. We received this funding for our son and it helped us out so much.

I am trying to remain positive and focus on what we can do next to help her but I am worried about “the label”. With our son, the label that came with the autism diagnosis was welcome, it helped us obtain funding and assistance for him that he needed. He clearly has special needs and I have never hidden these to his teachers, friends or family.

My daughter is different. She doesn’t appear to have any special needs and while a label might help the school obtain extra aide time, a label can also imply certain expectations of function and behaviour.  I don’t want her to be judged by the fact she has Aspergers – I want her to be judged on what she can do as an intelligent, funny, affectionate, unique little girl.

She may be known by a different label today, but to me she is still my little girl from yesterday – and I will always love her, just as she is.

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11 Responses

  1. cathy says:

    *hugs* all of us just want our children to be happy and healthy, and none of us want them to be labelled. Hopefully, your little girl’s personality (which sounds wonderful) will continue to shine through so that the “label” won’t overshadow who she is.

    • Kirsty says:

      Cathy, thanks so much for your lovely comment. It will all be okay, but it is always hard to find the positives and stay strong in the beginning…but I’m sure her enthusiasm will definitely shine through!

  2. Oh Kristy, my heart goes out to you. I’m sure the past 24 hours have been incredibly difficult. Hopefully now with more help and assistance available your little girl will develop into an amazing young women and no one will even see the label!

    • Kirsty says:

      Carly, it has been hard but having so much support has really helped this week. And I know the help and assistance we will now receive will make all the difference to her. Thanks so much for your lovely comments, I really do appreciate them!

  3. I ditto everything Cathy has said above. I dont the “label” defines who she is, wants to be or will be, nor does it define you or your family, labels are just for paper pushers. It might have its uses such as extra support so take them but dont be defined by it. I realise that is earlier said than done!
    Take care x

    • Kirsty says:

      Courtney, what you say is so true. I guess we will work through it, but for me, this is such a similar situation to my son, yet so very, very different. Just doing my head in a little at the moment! Thanks so much for your advice and your kind words!

  4. Lisa Wood says:

    Labels are not all bad. At least you now have something to move on with, and work out. We have a boy who is also “Special”. He is now 9 years old. We have special help for him when he is at school, and we have special classes to help him understand.
    Its not easy accepting that our kids are different, but then again maybe its us that are different, and they see the world through their eyes as being normal!
    My heart goes out to you.
    All the best
    Cheers
    Lisa
    Lisa Wood recently posted..101.5 Radio Station

    • Kirsty says:

      Thanks so much for your words Lisa. You are right, the label will assist us in getting the help we need but it will never define who my daughter is – she will always be the sweet, affectionate, enthusiastic and entertaining girl she has always been. No label can change that…

  5. Thanks so much for sharing this link over on my blog. It echoes so much of what I have been/am feeling with my daughter xx
    Jane @ The Hesitant Housewife recently posted..Diagnosis

    • Kirsty says:

      I’m glad it’s helped in some way Jane. Another post that may be useful is this one – http://myhometruths.com/2012/05/advice-i-wish-id-received-as-a-special-needs-parent/ It’s the sort of post I wish I had have been able to read when we received our first diagnosis and it may help in some way too.

      If you ever want to talk or vent or share I’m more than happy to be a willing ear. I hope you can access some early intervention for your daughter soon to help her out and to make things easier on you too. Take care and know that you and Milla are in my thoughts.

  1. August 2, 2016

    […] We were scared she would be defined by her diagnosis – forever limited by her label. […]

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