To be honest….

I saw this tweet the other day:

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It caught my eye, not because I am struggling to write anything at all( you read my last post right?) but I am struggling to write. When I started this whole adventure, do you remember how raw my writing was? It came straight from the heart and usually with little or no thought. I just sat down with the computer, switched my brain off and just let my soul say what it wanted to. It was amazingly cathartic for me and people really enjoyed reading it. I know they did, cos they told me they did.

When I tweeted Kate back to say thanks for the article she did something I wasn’t expecting. She read my mind:

@KateLPortman: @mrssavageangel hmmm. Why are you finding it hard? Are you struggling to find the words? Or are you fearful? Think they’re rubbish etc?

It stopped me in my tracks.

Because it’s a bit of all these things. I think I have the words. They run round my head constantly and sound great (even if I do say so myself 😉 ), then I sit down to write and *poof* they’re gone. Maybe I am afraid? Of not being good enough to compare. But why am I comparing myself suddenly? I never used to. Maybe it’s of myself, of my thoughts, of what’s been going on in my head. And maybe I’m afraid if I empty my head, I won’t know what to do with the aftermath.

I tried to write it down in January, but it didn’t sound right and anyway, I still wasn’t ready to share it, so it sat there, in my draft folder, gathering digital cobwebs. But now?

I don’t know how to put it, so I’m just going to say it. From the beginning.

If you read me regularly you’ll know, Oscar has a speech and communication delay and this was initially discussed with the Health Visitor back in April 2014. She visited a couple of times and just something about his ways made her suggest we visit a paediatrician, just to eliminate anything more serious than just a work a day speech delay (which I hear are tres common and nothing to worry about). An appointment was made in September and the concern in the doctor’s face and words was obvious. She asked if we had heard of Autism Spectrum Disorder, ordered further tests and leant towards us, explaining we were “probably in that ball park”. For a week after that appointment I couldn’t look at Oscar. Suddenly I couldn’t be with him, didn’t know what to say to him, what to feel. I was scared of my own toddler son.

Because you see she used the word probable and not possible.

I cried. Long and hard. It was so awful and no one could help, no one could say or do anything to help. I was directed to the National Autistic Society website, which was the worst thing I could possibly have done. All I could focus on were the awfully negative stats such as 70% adults with Autism Spectrum Disorders are unemployed and how people with ASD don’t feel things the way other people do. Brilliant. So my boy would never be financially solvent and he didn’t love me. Worst. Week. Ever.

To start with I chose not to tell anyone anything. But carrying something so weighty without talking about it nearly crushed me and after a while it became clear keeping this secret was breaking my heart more than the secret itself. So I told a friend. The relief was palpable and the more people who knew, the less scared I felt. Which makes sense if you consider the power of a secret lies in its keeping. But I still couldn’t share it with my blog. I wanted to, but not all the family knew and I hated the thought of them finding out in such a public way. So what I did write skirted the issue, alluded to his differences, and generally read like someone else’s life.

So over the months we saw various specialists and watched as he started and developed at preschool. We went from being sure, to not so sure, to sure, to totally confused. He ticked some boxes, but not others. I tried not to read too much around the subject and focussed on Oscar.

Then we had his multidisciplinary assessment last week. It was a big meeting, with seven of us in a hot room. No one said anything I didn’t already know or agree with, which was relief. And then it was agreed that while Oscar sits on the borderline for a lot of the markers for ASD (mainly due to his age), the overall feeling was that a diagnosis of Autism Spectrum Disorder would be appropriate.

My world didn’t crumble the way it did the first time round. I think I knew it was coming and actually having this validation will open up doors to support he clearly needs. He’s progressing so well at his preschool with the bit he’s had so far, just think what he could do with more?

And now I’m exhausted. I will write more, but for now that’s me. I’ve just eaten a pastry and bitten my thumb until it bled. I feel like sobbing, but I’ll save that for later as I’m in a coffee shop and it could get messy!

What it will mean I have no idea, so don’t ask. I’m trying to not think beyond the here and now. It’s getting me through the day at the moment. But it does mean he’s who his is. Same as you. Same as your child. He’s unique like we all are. He just has a different way of seeing and finding and making sense of the world.

So thanks Kate. You were right.

@KateLPortman: @mrssavageangel I sometimes find the posts I’m more fearful of writing are the VERY ones I need to write. x

 

 

Comments

  1. Oh hun, I know exactly what you are going through, we’re going through the same thing. And you’re so right, we’ve read so much that scared us but we got through that initial stage of what if. We’re currently awaiting a formal diagnosis but have been told to expect it & prepare ourselves. I’ve fully gotten my head around it now and instead of what if’s I’m looking at him progress with the support he’s received. It’s slow progress and he’s not yet talking but progress is progress. If you ever want to talk then I’m on Twitter @gymbunnymum or my email is on my blog. I’m here any time xx

    • mrssavageangel says:

      Thank you so much. I’ve read some of your posts about your little dude. He’s doing so amazingly well! Oscar’s words are coming, but they’re sporadic. Being at a mainstream nursery with an amazing SEN has helped massively already. You’re right though, it’s the what ifs that will do your head in if you let them. Well done for taking such a positive approach. See you on the tweet deck 😉

  2. Well I think you found the words this time. And I think that this post will help a lot of people especially because you admit how you were scared and people don’t do that. I admire your honesty and you and Oscar will be fine, so what if it’s not what you originally expected, for all you know that path would be rubbish and this is going to be much much much better.

    Massive hugs for you and Oscar and I hope the pastry helped xxx

    • mrssavageangel says:

      Thank you so much. I don’t know if it will help anyone, but it’s certainly helped me. Pretending to be anything that what I am has always proved difficult for me. Love the idea that the path I expected might have been rubbish anyway. I never thought of that! And yes the pastry got me through! hahaha

  3. Wow lady. I am beyond thrilled that you have managed to find the words to share this. And in awe of your courage and honesty. So proud of you.

    I’m so sorry to hear that you struggled with this for some time before you felt you could publicly share it. That must have been incredibly tough but I’m glad to hear that you now have some answers and an idea as to where to go from here. Our children are our children regardless of how they may differ from others and the love you have for Oscar screams from this piece.

    I always think that when life throws me a curve ball, that more often that not the what ifs and my imagination is much worse than any reality.

    Here’s to you and Oscar and the future, no matter which path you take. With love x

    • mrssavageangel says:

      Thank you so much Kate. I can’t tell you how much of a weight off it is knowing I can talk freely about what’s going on in our lives. It’s a stressful enough situation to find oneself in as it is, without trying to hold it all back, being careful of what you say. My blog has always been a place I can come to empty my mind of the things that are bothering me, so I hope I can start writing more freely again.

      Thanks for the support xxx

  4. Been meaning to comment for ages! So glad you got it all out there, I felt huge pressure as Oliver was a fairly late talker (more interested in being active) and just felt like *I* must be doing something wrong. It’s great you’ve got a diagnosis and that you can now get the right support as well as Oscar

    • mrssavageangel says:

      Thanks chicken. It started like that ‘what am I doing wrong’, but soon became apparent there was more too it. Although it doesn’t stop me feeling like I could be doing more all the time! Funnily enough I asked if there was any support for me, now we had the diagnosis, they just laughed and said no. Charming!

  5. A very heartfelt and interesting post my love. I could feel your frustration and worry through your words. I used to work for the National Autistic Society and also have family members with an ASD diagnosis, all I can say is that it is brilliant that it has been diagnosed so young and that there is a wealth of support out there! Don’t feel down. Talk to the NAS, there is support for parents / siblings etc unless funding has stopped this?!

    • mrssavageangel says:

      Thank you so much. I am working on getting some support and will contact the NAS. It’s not an easy thing to take it, but its not as unusual as you first think once you start to talk to people!

  6. StephsTwoGirls says:

    Hi, lovely to find your blog – I’m doing the Britmums SEN round up this month and I’d like to include this post if you’re OK with that? Now you’ve managed to find the words, I hope you’ve found that there is a lot of support out there in Blogland 🙂 I remember being at your stage, over 5 years ago now. It will always be a rollercoaster, but there will definitely be amazing times in there! x

    • mrssavageangel says:

      Hi Steph, that would be lovely thank you so much for thinking of me. I can’t get over how being open about how I was feeling has introduced me to a whole new world of support and information. Its so very daunting, but most days are easier than not at the moment and I’m learning to love and appreciate that. He amazes me every day. I swear only ten minutes ago, I wouldn’t give him something and he said (for the first time ever and possibly for the last time for a while, you know how it goes) Its Not Fair! I was so shocked I couldn’t help but laugh. I didn’t give him the thing though ha! Mama wins!

  7. I feel very fortunate that I knew so much about ASD long before Tyger’s diagnosis (in fact, I was the one trying to convince health care professionals he was on the spectrum) because I never really had much of a ‘shock’ moment. The closest I came was when I decided to write down any traits he displayed as a ‘just in case it becomes relevant in the future since it runs in the family’ measure. Then, once I started I just kept writing and writing and it hit me that he might actually be autistic.

    In terms of such a high percentage of people on the spectrum being unemployed etc. I think it’s worth keeping in mind that the stats will be skewed. A lot of the more ‘high functioning’ adults with ASD won’t have been diagnosed (like my dad) because it wasn’t recognised when they were younger so they won’t be taken into account in these figure and are more likely to be in work (my dad has a very highly paid, successful career). Just in case that helps you feel better. xx

    #spectrumsunday

    • mrssavageangel says:

      Thank you for that. I knew lots of older people wouldn’t have been diagnosed (I personally think my dad is in there somewhere!) but it never occurred to me that it would skew the figures, so thank you for that! I think perspective is everything and I’m so glad you had such a positive one from the outset. I have a friend in a similar situation whos Uncle and Brother are both autistic and it meant she knew that he daughter was long before diagnosis. It’s all relative (haha pun intended!) Hope you guys are doing well xx

  8. How have things changed since this point Lisa. How does it feel looking back? Can you see the progress for Oscar and for you? I recently looked back at a post and it really helped me to see that we have indeed moved on. Sometimes when we are in the battle everyday we can’t see it. Big hug x

    • mrssavageangel says:

      Things have changed, we’ve changed. It is good to look back, it really does show you the journey you’re on. I’m really glad I’ve got this record. I suggested to other autism mamas in my Early Bird group to try keeping a diary for the same reason and I got laughed at!

  9. Such an emotive post lady, and one i truly understand. I look forward to reading some of your more recent posts as you have moved through the grieving period and learnt to accept everything. Maybe something we never do?! who knows? Thanks for linking up to #spectrumsunday I really look forward to further posts xx

    • mrssavageangel says:

      Thank you so much and so much for hosting. I think having a place to share with others who may understand is important.

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