Finley's Journey: A Diagnosis.

You may remember some 18 months ago that Baby Babble, my weekly linky, just... stopped. Every week I was whinging about the negatives and never really cherishing the positives and, to be honest, it upset me. So I stopped the linky with a view of taking one month off.

18 months-ish later, it's still not back. Let me tell you why that is.

After the first few weeks of the break I still failed to see many positives and I was beating myself up about it something rotten. My Dad had just died and Finley appeared to be regressing on me. What was up with life? Was it me? Was I too consumed with grief to appreciate them?

I hardly ever write about Finley except for very recently where I feel I can start to disclose little things about him. The truth of the matter is that he had stopped developing as he should have. He rolled when he should, started weaning when he should, he even started babbling when he should  but that was about it.

He began crawling shortly after his 1st birthday and learned to stand, aided, at around 15 months. He started walking at 20 months. A little on the slower side than perhaps would normally be expected but still, he made it!

When it came to responding to his name or eye contact being made however, he's still struggling. He has little to no understanding of us and has not attempted to talk. We know when he's happy because he makes a sea lion noise and flaps his hands. We know when he's frustrated or wanting something because he says beh-beh/baba. On being referred to speech and language we were advised he had no joint attention, which would not only explain his inability to communicate or understand, but would also be a reason as to why he didn't play with us or care for our physical contact. He had no idea what we were there for so until that moment came, we were unlikely to progress.

How upsetting to hear, as a mum particularly. You see, he despised me touching him or trying to have a cuddle. He had a lot of love for his Daddy and he seemed to be the only person that Finley would allow near him. It was hard to take, from a selfish point of view, but a good thing that at least we know it is possible to have a relationship, of sorts, with him.

He is just about getting past the 'flicking' stage. He could quite happily sit and flick his toes for hours on end. I'm not exaggerating when I say hours. He can go into his own little bubble and nothing can pop it until he is ready. Balls are a big deal for him too. We have the spiky ones, the light up ones and the smooth of all sizes. He can stare at them from millimetres away, practically touching his forehead. He'll stroke them over his face, neck and hair, and is finding them bouncing from his hand when he releases it really very amusing. He will pivot or pace, eyes'a'rolling to boot. Complete in his own little world.

Just last week, he held my thumbs off his own back. This was a big deal!! He stared into my eyes (Huge deal!!) and smiled whilst dancing (MEGA DEAL!!!) . He has never done any of those on their own, never mind together. I got seriously emotional and I keep going back to stare at the picture that my hubby luckily caught on his phone. Just, wow.



Anyway, we waited 10 months for his referral to come through to see a paediatrician and that first appointment was this morning. I have been so het up, stomach churning, worried, nervous. Why? I don't know if I'm honest. It wasn't at all likely we'd have any answers, it was probably the start of one long and winding road full of observations and brush offs of "we'll wait and see".

Wrong.

Today, we received a diagnosis within the first 40 minutes. Finley has low functioning, non verbal, ASD. It's a severe austism diagnosis.

It came as so much of a shock that my husband burst in to tears in the doctors office there and then. I mean, the diagnosis itself was no shock. We already knew he had GDD (global development delay) and we suspected autism of some kind, going off of Google etc. But we genuinely didn't think it was as "incredibly obvious" as what the paediatrician could see within 40 minutes. I guess maybe we had become blind to most of his traits and behaviours, because that, to us, is just Finley - not a condition.

Will he ever speak? We don't know. It's best not to assume that he will and hope for the best. Will he ever 'catch up'? Again, we just don't know. All we can do now is learn to cope and deal with it now that we have an official diagnosis and for me, that's a relief. It's a relief in knowing that it's been OK to not cope so great with him at times. I'm sure some tears will come this evening, I've choked some back a couple of times already today.

Maybe one day #BabyBabble will return, but for now I'm not pressuring myself to regularly include him in any part of the blog unless I need to rant or rejoice every now and then.

Our journey begins now...

16 comments:

  1. I'm really sorry to read such a post. The doctors don't seem to have been particularly sensitive to the subject. I'm sure Finley is a lovely boy and he will grow up strong with your loving support by his side.
    Lots of hugs to your whole family! xx

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  2. it took quite a long time to get the referral - 10 months seems a lifetime. Hope all goes well from now on.Positive thoughts your way. R

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  3. Oh bless you, like you say it must have been a huge shock despite some of your suspicions. I can't think of anything I could say other than I'm thinking of you and wishing you all the best for your beautiful boy xxxx

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  4. Sending love and wishing you all the best, the diagnosis must've been a blow, but you can now move forward at least knowing what is wrong.xx

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  5. OH goodness me! I can not even imagine what it's been like - but at least now you do have a full diagnosis and can go from there, which has got to be better than not knowing. I think I would fall apart my self in the office if this was me - so I totally understand your husband! Hugs and well wishes to you and your family! xx

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  6. I was truly touched by reading this post. Having similar issues with family members, I know you will have a tough road. BUT just look at your gorgeous little boy! What an amazing photograph, and he is a real cutie. He will always be more than his diagnosis. Your beautiful little Finley xx

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  7. This is really interesting. My brother was very different and developmentally delayed somewhat and eventually we found out he had a chromosone deletion and he was diagnosed as special needs. Your story here reminds me of my mums experience. Sorry to hear about your dad. That is awful! Angela from Daysinbed

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  8. Oh gosh it must be so hard waiting for those referrals and then getting the diagnosis as well, but you have such a lovely little chap :) x

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  9. I'm sorry to hear about your son, but what a moment it must have been when he took your thumbs and looked into your eyes. x

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  10. Waiting for those referrals must have been horrible. That photo is incredibly sweet x

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  11. It sounds like it's been a difficult journey for you and ASD is a hard diagnosis to hear, even if you're expecting it. Good luck from hereonin, you're doing a fab job so just keep doing what you're doing <3

    Jess xo | The Indigo Hours

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  12. Hugs mama - the diagnosis is always like being hit with a brick. It'll shape your family with the nobbly bits being outweighed with the moments of light and laughter, I'm sure xxx

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  13. Oh gosh it sounds as though life has been pretty tough for you all. Finley is such a beautiful little boy xxx

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  14. Great to know that he smiled and trying to communicate lively with you. A source of inspiration! :)

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  15. It is terrible they kept you waiting so long but at least now you have a diagnosis you can support his development in the ways he needs and you are already doing an amazing job xx

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  16. It sounds like you have had a tough time but nice that he gave you eye contact.

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