I want to tell you something about Isla

26th October 2015

So this is going to be a bit of a different post to normal. I wanted to do a video, but I don’t think I’m articulate enough to convey it on a camera.
I’ve been toying with the idea of talking about something so, so personal to me, but I feel like I need to, just to know if there’s anyone who can share these experiences with us.

I wanted to talk about Isla. Isla is 3 and nearly 5 months. Isla loves spinning around, she loves putting things in order, and more than anything, she love love loves numbers. She can line the alphabet up in order with her flashcards with ease, and she can count to 50. She loves Mickey Mouse, and she loves Sofia the First, and she loves music too.

There are a couple of things Isla isn’t too fond of either – she hates the sound of the hair dryer and she doesn’t like how loud the hoover is. She’s not too keen on sleeping and she’s a pretty fussy eater.  She doesn’t like it when we interrupt her playing with her number flashcards either, but that’s getting better.

What I’m basically trying to say is that, well, Isla is autistic. I still can’t say it out loud, and to be honest we’re all still trying to process this. It’s still so raw, and I feel… numb?

I mean, we knew – but it’s a totally different story when a clinical psychologist properly diagnoses your 3 year old. I know, I know it’s nothing that we can’t handle, and I know things could be a lot worse, but when it happens to your own child, it’s totally different isn’t it? Currently, I feel like a huge wave of sadness has washed over me, and more importantly, anguish at the fact that I can’t fix it – why can’t I fix my baby?

For the past two years I’ve been trying to figure out how, why, this has happened. Deep down, I know this isn’t my fault but I still find myself thinking, I ate nothing but healthy food when I was pregnant, I took those pregnancy vitamins, she was a perfectly normal baby, how could this happen?

I’ll be brief, because I could talk about this all day, going in circles about her. Isla’s speech is underdeveloped – after her 1st birthday, things seemed to regress and soon after, she didn’t say much at all. It’s only recently that she’s been saying words and very rarely, two word phrases. Her social skills aren’t where they ‘should’ be either but the nursery has been incredible in aiding her, because she now has a friend, and I’ve been told she’s very fond of playing chase a large group of children.

She loves giving kisses, and cuddles, and she is a genuinely happy little girl. The doctors have said they can’t really place her on the spectrum because she is so young and of course, I’m positive things will improve because she is still so little. I know she’s special. She’s so damn clever and she always amazes us with what she can do, every day.

I’ve been promised that there will be so much support around us now, particularly when it comes to school and I can’t be more grateful for that. I wanted her to experience mainstream school and I’ve been advised that it’s more than acceptable.

But I couldn’t be more thankful for the support closer to home. Adam has been my rock when it comes to Isla, though at times she’s made it seem a bit difficult, he’s always treated her like his own and I couldn’t imagine ever sharing her with anyone else – you’re incredible and you have supported us more than you will ever know. It’s been so much easier having my best friend with me to help stop the cracks from appearing, and I know you love her so much, and you are always, always there if and when we ever need you. The same can be said for my parents, because I would never be able to provide for Isla if it wasn’t for them.

I always think, I can’t wait for the day she says “I love you” or even “why” over and over and over, like she should do – I really can’t. I can’t wait til I can have a full blown conversation with her, and I’m sad because she’s at the age where she should be having hilarious, Facebook video worthy chats with us.

I probably sound like I’m giving a speech for an award, and I don’t mean for it to be – but as I said, I’m not articulate enough to put how I feel about this into words.

Like I said too – I wanted to write this to try and put all of the jumbled up mess into words, and more importantly – I want to know if there is any parent going through the same. I want to know that there is chance for things to get better and I want to know how you handled it all, because now it’s real, I can’t seem to control my emotions. Please tell me that there’s light at the end of the tunnel, I just want the best for her.

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  • Tami, I’m not sure if a comment on your post is the best place to tell you this, but I just wanted to say I think it’s brave and incredibly touching for you to share something so personal. It made me emotional and teary to read all the wonderful things about Isla, as well as the struggles you’re dealing with now. I’m not in the same situation, so I know I can’t fully understand or offer helpful parenting advice in that regard, but I am in school for speech pathology and I’ve already seen SO many amazing examples of how speech and other support resources can make such a positive impact. Obstacles can definitely be overcome. I know it will be hard at times, but Isla is a wonderful little girl (seriously, the stories and pictures you share are too cute) and she is lucky to have an amazing mother to love and support her through it all. Sorry if this is long & sappy but it’s true! xoxo

  • Kat

    I’m not quite sure how to phrase my comment on here but this is such a well written post and I can imagine how difficult it must be to try and come to terms with Isla officially being given a diagnosis.
    My son is 2 years and 4 months and he is behind on quite a few things. He will say single words but no phrases and he has only just started going to nursery but he needs one on one attention as he doesn’t focus like the other children or join in with them very much. He’s a fussy eater and doesn’t always chew his food properly. He is a very loving, smiley and happy little boy but I am worried at the back of my mind that he too may be autistic.
    I’m the same as you with my pregnancy and don’t really understand why he’s behind other children right now as he is clever, he knows his shapes and numbers too and likes to play with his musical instruments. His nursery have tried to refer him to get speech therapy and help but unfortunately because we live in a different zone to the nursery, our council won’t help us with any support for him.
    So, I guess I just want to say that I’m sure you’ve done everything you possibly could have done to help Isla and give her the best that she deserves and that you will get through this together. I don’t have an official diagnosis for my son and I don’t know if or when there will be one but thank you for bringing awareness to something important and know that you aren’t alone 🙂 xx

  • Susan

    It’s really great you have posted this, and it must feel better to write it all down.
    My brother is autistic, so I don’t know how you feel obviously, but you don’t need to feel bad- you have done nothing to make this happen and I can promise you it is not a bad thing. Autism isn’t an illness or a ‘problem’ – it’s just society is not suited around autism, but with a bit of work it can be!
    You will already know that people with autism are incredibly intelligent, most scientists are autistic. They have unbelievable talents and memories. Also, very importantly, they may not express emotions in a way you understand at first, but form very close bonds with friends and family. You are waiting for the day she can have hilarious chats with you but in a few short years she will be explaining things you would never have dreamed of!
    Yes it will require some work to get Isla everything she needs, but what I would recommend is, when you feel ready to, join BAS (they are miracle workers) and read a couple of their recommendations.
    Finally autism is such a vast spectrum, Isla may be ‘high functioning’ and just have a truly brilliant mind, or need lots of the support which is out there. My brother is at university with a great group of friends and is really independent.
    I’m sorry if this is jumbly but there’s a great network out there of other parents to support you. Best of luck xxxx

  • Chloe

    It’s always scary being told your child is ‘different’ but I promise you that you will feel so so proud when your girl is giggling louder than anyone else, has friends who can trust her more than the other kids, her teachers and adults who meet her will realise what a sweetheart she is and how she works hard to be good, when she is miles above the rest of her class and has to have work set for her which is for kids in years above her, when she is telling you amazing things with an enthusiasm that is infectious, when you can bond over all her favourite things (you’ll never have to worry about not knowing what to do, she’ll have great ideas!) when you can connect with other parents and feel so much better, and you won’t have to bother remembering much anymore because she will for you!
    So many great things come with autism, and also challenges which you will always overcome. It is obviously a spectrum and every child is so different, but autism isn’t a problem, just a difference. It may take longer to bond with Isla, but she will bond so much stronger with you because of this. You are clearly a wonderful mother x

  • carlahollands

    I can’t pretend that I know what you’re going through. I’m an assistant manager at a supported living home for adults with autism and the people I support are truly the most incredible people I’ve met. There all at different points on the spectrum but they all live happy and fulfilled lives and have so much love to give. I guess what I’m trying to say is don’t be sad, Isla’s autism will make her unique and it doesn’t need to stop her doing or achieving anything. There is so much support out there so make sure you access it especially as she gets older and you may experience more challenging behaviour.

  • roseyposy

    Your daughter is perfect no matter what x

  • I think you’re so amazing for sharing this with us Tami, and Isla’s so lucky to have such a wonderful mum. Something I’m really guilty of is worrying, especially when it comes to the boys. But more often than not, whatever I’ve worried myself over we deal with fine and it’s never what I’ve built it up to be in my head. I know it’s not the same, but with the right positive support I’m sure you and Isla will overcome any challenges you might face in the future together. I’m no expert on autism, but I bet you’ll learn so much from her and your bond will be all the stronger for it. She’s such a beautiful and lovely little tot, I doubt anything will hold her back. Sending lots of love and hugs, Steph xxxx