The broken boy

 

The news today isn’t really ‘news’ . It’s confirmation. However, as much as you think you are expecting it, and prepared for it, and deep-down-knew-it-for-months-anyway, it is still something of a body blow when you hear it from a professional.

Fin is not ‘badly behaved’. Fin is not uncooperative. Fin is not unhappy.

Fin has ‘special needs’.

His big brother, when I tried to explain to him that we need to do things a little differently with Fin now, said ‘Oh, so Fin’s a little bit broken’.

That’s when I cried.

Today was our initial appointment with Dr R, one of community paediatricians. This was Fin’s first assessment following his meeting with Speech and Language Therapy a few weeks ago.

The appointment lasted an hour, with the (lovely) Dr R slyly observing Fin whilst he played with a variety of different toys and she chatted with me about his birth, his early years, and how we perceive his behaviour at home. Everything, from my pregnancy to his developmental milestones, sleeping habits and childhood illnesses were discussed whilst she cleverly watched him at play.

Fin was clearly relaxed with her and the environment from the outset so, after twenty minutes or so Dr R set him some more specific tasks – doing a wooden tray puzzle; throwing, kicking and attempting to catch a tennis ball; looking through picture books; copying what a puppet dog was doing (sticking out his tongue, jumping up at down, laying on the floor). There was also a hilarious game where she ‘stole his nose’ and fed it to the puppet dog.

Then, her initial assessment.

Fin has moderate to severe communication difficulties, he is four in November but is at the level of a two year old.

She does not want, at this point, to discount an additional diagnosis of autism. She did stress, however, that if he is on the autistic spectrum, it is likely to be mild and not impair how he socialises with other children; more that certain things may have to be explained to him differently, and that he may find certain concepts almost impossible to grasp.

Dr R would suggest that, if we defer his entry to primary school from August 2013 to August 2014 then there is a chance that his speech and communication skills will have improved enough for him to hold his own socially amongst his peers; though she does forsee that he will very probably require one-on-one teaching assistance in the classroom.

Dr R was pleased with his ‘social skills’. He is unflustered meeting new people, and responds appropriately with smiles etc. She is happy that he has an age appropriate understanding of emotions, and responds appropriately to changes in facial expression and tone of voice, and also responds appropriately to pictures / situations that are funny, sad, or scary.

He played with the collection of toys he chose appropriately – cars were cars, he was playing an imaginative game with the cars and some blocks on the floor and ‘talking through the story’ as he played.

The areas she thinks give cause for concern:

‘Incorrect’ responses to questions. At one point he started talking about Kenzie, who is his friend at nursery. I heard him say ‘I go nursery see Kenzie after lunch’. Dr R couldn’t understand what he was saying, but, of course, I’m more in tune with his speech than she is because I am around him all the time.

‘Fin, who is Kenzie?’

‘My daddy go work in Jeff’ (we call our car Jeff. Don’t ask)

‘OK, so daddy is in work.  That’s good. Who is Kenzie?’

‘Getting sausage roll for lunch’

He could not do a wooden tray puzzle (the ones you pop the cut-outs into, you know the sort of thing I mean) because she had placed the coloured pieces upside down. He did instantly realise, however, that there were more spaces than there were pieces to put in (15 spaces and only 7 pieces), and he didn’t like that at all. (He had just completed a much more difficult tray puzzle quite easily, but all the pieces were there and they were facing the right way up).

He suddenly stood up and shouted at us for ‘no reason’. There was a reason, he was trying to pick up four tennis balls at once and he kept dropping them. She explained that this was him becoming frustrated with himself, but not internalising it, rather turning it to shouting at others. (this happens a lot at nursery).

He became interested when he heard her mobile phone ringing (she had rung it from her office phone), and said ‘Your phone is ringing’ and went to look for it (it was in her bag). Fin became very agitated when she didn’t answer it, and continued to look for the phone until he was distracted.

The one task Dr R seemed to be most concerned about was the picture book. She showed him a picture book, he was naming everything perfectly until he got to a page of a picture of a ball. The page had scribbled crayon on it (though you could still quite clearly see the ball), and he could not ‘see’ the ball, he could just see ‘dirty’. There were other pictures within the book that had been similarly defaced to some degree and, whenever he got to one of those pages, he couldn’t see past the ‘dirty’, even if it was only the tiniest scribble across the image. The ‘dirty’ seemed to unsettle him, but I am not sure whether that is why, at home, the boys are taught to respect books to such a degree that they have to be reminded that they are allowed to colour in colouring books.

Any time he started becoming a little antsy, he started to hum. He does this a lot, when he is anxious and when he is concentrating. It’s always the same tune – The Imperial March from Star Wars.

She was interested in how he seems to get sensory overload in certain situations, but not others. He plays fine in areas like soft-play, parks etc where all the children are playing the same sort of game, he’ll join in with the game and seems to have no problems attracting, and retaining playmates.

He does less well in nursery where each group of children are doing something different. So, if he is playing dressing up, but there are other children singing in another corner, and there is a story in another corner, and there is, say, a phone ringing, it is all too much for him and he tends to become upset, looking around him, showing typical ‘nervous’ gestures. If he isn’t taken to one side and ‘calmed down’ or distracted on his own, or in a very small group; then he starts with the inappropriate shouting, moving on to the tantrum if the shouting isn’t dealt with by the staff.

Another thing that interested Dr R was Fin’s responses to music. Put on some classical music, or dance music with no lyrics and he is fine. As soon as you put music, and lyrics together, he gets upset, claps hands over his ears etc. Add some extra bass to it (think something like The Prodigy) and he gets extremely distressed.

So. There you have it. Our next appointment with Dr R will be in January. In the meantime, the child psychologist will be drafted in to look further into the areas of concern; and SALT will be visiting nursery to see how Fin’s communication is within a group environment. We have all hands on deck, now.

I am trying to hard not to blame myself for this – did I let him watch too much TV? Did I not read to him enough? Should I have noticed his issues earlier? Why didn’t I act on my instincts when I suspected something was wrong this time last year when those sentences didn’t start coming? Dr R says I ought not blame myself. This is nobody’s fault. It is a mother’s natural instinct, I think, to blame herself, as though acknowledging and accepting blame will somehow magic up a solution. There is no magic solution. Mummy can’t fix everything. Mummy can’t fix broken boys.

Once again, my friends on Facebook and elsewhere on the internet have been remarkable; their advice – as usual – has been wonderful, and I am extremely grateful to them for being such wonderful sources of help and comfort. You know who you are. Thank you so, so much.

A lovely quote from a lovely friend:

“When my son got his diagnosis, it was as if I’d spent years expecting him to fetch, bark,roll over and wag his tail.

And then someone had pointed out that he was a cat.”

Fin is the same Fin he was when he woke up this morning. He’s still my lovely, affectionate, funny, bright little boy and nothing will ever change that. Life may well be different now, and we will have unexpected challenges ahead learning about our ‘little cat’; but we have the help and support of some of the most wonderful people I know to help us through and, for that, I am eternally grateful.

All I hope is that I can step up to the plate and be able to provide him with whatever he needs to be happy and contented. Because happy and contented is what matters more than anything else.

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8 thoughts on “The broken boy

  1. alythmum says:

    You know where I am if you need me …. ((((HUGS))). Remember it is a signpost not a label ….
    I can remember not believing that my eldest child could be ‘SEN’ … especially as he had learnt to read at 3yrs and done other clever things and now (at 19, almost 20 years old) he is still academically very clever but he does need that extra help to manage.

  2. Fin is not broken – he’s just different. I know he feels broken right now but different children DO bring advantages as well as disadvantages. I wept and wept with both my boys diagnosis and almost 7 years after an initial diagnosis we are hoping to get a definitive answer in September. It sounds like they are far more on top of things in Scotland than here down South. Lean on your friends, weep, wail, shout and scream but don’t blame yourself. It is incorrect and only serves to make you feel worse and make you a less effective parent. I fail daily as a parent – clearly you’re not paying enough attention to my fbook posts 😀

    Nik x

  3. Helen says:

    Hugs … who wants ‘boring’ children anyway? (Don’t answer that, really … don’t try to imagine that other life … I’m sure it must be terribly boring …)

  4. Leah says:

    Ah welcome to the club sweetie . Its hard and can be unsettling and yes Fin is still Fin as my Heather is still MY Heather . You have to adapt and seek help from wherever it comes . I remember getting the DLA application back and seeing what Heathers head teacher had been telling me for years in “black and white ” i was shockled to the bone as it was in writting and so therefore it was real and what i had been fighting for ( a label if you will ) was not MY inagination , Still people dont always “get” Heather but we get there x Here when ever you need a brew x

  5. emma ruffinato says:

    Hey jac just wanted to say that you obviously know your little man very well and are doing everything you can to make sure he is happy and contented. I know you know deep down that there is no blame to aportion but noone tells you how challenging being a parent is or about the guilt … there’s always something to worry about … fin will always be fin and you will always be you… I always tell my girls that it is the differences that makes life interesting

  6. Scarlett says:

    May your path with Fin be bright, correct for you and with the strength to follow it faithfully. You are the best parent for this child right now!

  7. My lovely friend – you are a fab Mum and will do wonders for your fab boy, who is not broken. And as I have said to others of our friends with kids on the spectrum somewhere, I believe a huge part of why he is displaying slight and part areas of spectrum is the wonderful and wide range of life experiences he has received from you all these years… his social skills? Your doing my love – you have taught him well…
    Much love xx

  8. Heather says:

    Och my love… from the mouths of babes and we melt and wilt sometimes… I am quite uplifted to read of what sounds like a very comprehensive first assesment with a competent and caring professional who has your trust and respect. That’s a beautiful thing right there. Fin has all the right people on his team so far by the sounds of things and I love it that you’ve discussed the developments with his big bro already. You’re fab woman. More power to you. Snogs and love, H xxxxxxxxx

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