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Tuesday, 20 January 2009

The Trouble With Finn

Gorgeous though he undoubtedly is, Finley isn't an easy child to bring up. Like all boy's of his age he is constantly on the move, but he combines this permanent motion with relentless conversation, 1001 searching questions, and a running commentary of his every move, which is quite frankly exhausting. Though he is cute enough to get away with it, his hair is wild, his clothes are always undone, and his fingernails are dirty, and this alongside the fact that he can render a room immaculate to bombsite in the apparent blink of an eye, merely by hurtling around it and leaving destruction in his wake means that life as his Mummy always feels a little out of control... though my grubby little munchkin is rarely naughty, always polite and possesses emotional intelligence extremely rare in children of his age, so whether or not I feel demented is totally eclipsed by pride for a little boy who can with a simple sentence or two bring tears to the eyes of everybody in the room, so heartwarming is his sheer joy in everything he encounters and his skill in putting that joy into words. Though all Mum's like to think their children are special, I have always known that there was something different about Finley: that he wasn't like other children, and his first experience of formal education immediately resulted in assessment. Finley, I was told, wasn't right. He fell over too much. He was lacking in the scissor skills department. His gross and fine motor skills didn't marry with his very obvious verbal intelligence, he chewed his nails and worried too much and all of this implied that there was something wrong. That in their words, he would never fit into the standard educational system because his glaring innate creativity and emotional intelligence marred by his inability to stand up without falling over or running across the room and chucking himself at the wall just for the fun of it, would mean that he would struggle to fit into the typical classroom scenario. For a while Dyspraxia was talked about in hushed tones (as if it was a life sentence) but was ultimately dismissed by occupational therapists who declared him fine and dandy, said look, he can thread beads and draw perfect triangles: he can kick and catch a ball, walk along a straight line and though he is a tad wobbly, crawl around with his left arm sticking out at right angles to his body as requested: so let that be an end to it. He is a joy. Send him to big school and see how he fares. And so that is what I did. I sent him, and he took to it like a fish takes to water, loving the interaction with other children, adoring his teachers and enjoying the challenge of learning to read. And then the jungle drums started beating all over again. His letter formation was dodgy. He worried out loud about too many little things children his age didn't need to worry about. He pre-empted danger where there was none to be found. He threw his coat at his hook and dashed off to play without seeing it fall to the ground. Once he even managed to fasten up his shirt inside out... Finley, by all accounts, wasn't right. Could it be Dyspraxia, they whispered? Well? Could it? You tell me, I whispered back. Perhaps he was just five and very busy? Perhaps he's just bright and pre-empts danger because he is clever enough to work out that it does in fact exist, that this is a child with Coeliacs disease, a child used to identifying personal danger. Or perhaps, yes, perhaps, there is something wrong. Some of me wanted to say, You know what? Come back in two years and let him be a child for now. Some of me wanted to say, rather this spirited child, than the one in the corner so meek, the one internalising her every fear rather than talking it to death until it is understood. Rather this than the child who scowls and seeks perfection in everything he does. Rather this. And the rest of me understood that this is a child who one way or another has to fight his way through an educational system that will keep on drawing attention to his differences. That this is indeed a child who will not let me sit down without crawling on top of me and squashing his body against mine, who cannot bear hair cuts or hair washing, cannot tolerate the sound of the kettle boiling or the vacuum cleaner working, worries about the risk of the toilet flooding and is so afraid of dogs and goats he will run into oncoming traffic rather than come face to face with one. (Though thankfully loose goats are few and far between in these parts). That this is a child who is different and that it is my duty as his Mummy to give this difference the respect it deserves so we can all muddle our way through the school years. And so I began reading. I read The Spirited Child and The Sensitive Child. I read up on the symptoms of Dyspraxia and associated disorders, googled case studies, read The Sensory-Sensitive Child and finally found something that rang true with me. Sensory Processing Disorder described, almost exactly, my perception of Finley's difficulties. SPD with a particular leaning to Proprioceptive Dysfunction explained Finley's quirks and made sense of my experience of mothering a child like him: both the heart-ache and the exhaustion. And more than that, SPD was occasionally linked with children with Coeliacs, due to the fact that more than 40% suffered damage to their central nervous systems before diagnosis. I was ready to go in all guns blazing. I was ready to go in and fight the same kind of battle I'd had to have Finley's Coeliacs diagnosed in the first place: twelve months of knowing in my heart what was wrong with my child, but watching him slowly starve to death while the medical system investigated everything from weak stomach muscles to cystic fibrosis and stomach cancer, all the time ignoring my pleas to test him for what seemed all to obvious to me. So I was ready to do battle. And then a nice little woman called Pauline arrived, case notes in hand, admired my chipped paint and sat on my sofa and said that they in the Occcupational Therapy department at the Children's Centre had come to the conclusion that Finley had Sensory Processing Disorder, with clear Proprioceptive failings that could indeed be compromising his ability to manage a classroom situation. I could have kissed her. It isn't of course an answer. It is in fact merely a label. Sensory Processing Disorder covers a huge spectrum of difficulties that vary by both degree and impact. Nothing alters the fact that Finn is managing well, that he can now almost read and write and that label or no label, the kid can't stop talking. Life with him isn't easy. He is more demanding than the next child, but to me it is the fact that he asks me questions I cannot answer that is the exhausting bit and everything else is just a scrumptious little bit of the eccentric little boy he is. Eccentricity that is very real because Finley isn't experiencing the world in the same way that you and I do. And long may it last because chatterbox he may be, but I wouldn't change one little sausage of him. Not a single gluten-free sausage. banner17

16 comments:

Jayne said...

Well thank goodness the OT lady has come to the same conclusion as you. Now you're both working from the same page and hopefully she and her team will come up with ideas and strategies to help.
I have to say, I think you're a pretty amazing Mum.

Vee ~ A Haven for Vee said...

Every mother finds herself at one point or another going to bat for her child. You're so good at it and all the research...fantastic. Finn may not experience the world in the same ways that the majority of us do, but he experiences it in pretty amazing ways all the same. Reminds me of the Einsteins, the Edisons, the Michelangelos...all of whom experienced the world in different ways from the average. That's what creates genius.

A challenge to be sure, but oh, what a challenge!

Gena said...

Darling I know how you feel,we have had school psychiatrists and God knows who looking at Lucy,for what I feel is merely crippling shyness,but at least now you have been heard and you know what you are dealing with,Finn is a very special little boy,and I just know that all will be well,in his world and in yours.xxx

The Rose Room said...

What a dear boy and what a dear mother. Unique and special! Rachaelxo

Linda said...

My daughter has sensory processing difficulties, too. Since she was two, she's been working with an OT, physiotherapist and speech-language pathologist (to help with pragmatics). She's got definite propioceptive issues and difficulties with motor planning. Lots of challenges!
Your love for and acceptance of Finn really shines through. You're lucky to have one another!

Anonymous said...

Sounds like a creative genius to me and a darn cute one at that.
Victoria

Anonymous said...

You may also well note that highly intelligent children have the same sensory issues. Sounds like you have an amazingly bright little boy there. Trust your instincts.

rivka said...

I was so interested to read this as my children have various issues as well. One thing you might want to turn over in mind (along with everything else you have to deal with) is that Finley deserves his privacy. I understand the need to write and the need to write to communicate & share all this to others. I also know from experience that we want to help others by what we learn through our childrens' challenges.

But after I went around telling everyone this and that, I came to realize that my child and my children deserved their privacy. It is 15 years later and people that know my children *still* bring up their childhood challenges and diagnoses. "I am so shocked and thrilled that 'T' is married with a new baby. I never would have imagined that for her after all she went through as a child." "How is 'T' doing with the new infant?" (with large, scared eyes and concern as if she is still the challenged 10 year old.) "Oh look how well she is doing, isn't that a miracle?"

Really. You might want to consider how Finley will feel at 25years old, when the whole world has been told of his health issues and diagnoses.

Please forgive me, as I adore your blog and have been reading it for a very long time and just love every single thing about you. I am only suggesting the above because I have regrets of my own actions and how they later affected my children.

Much love to you and Finn.

Nicole the Canuck said...

Just thought I'd jump in here with my two cents...:-)
On the one hand, I agree with Rivka that respecting children's privacy is very important. But on the other, there is so much misunderstanding about these different "mental" disorders (for lack of a better term)that, by talking about it and informing people of the facts, it would help dispell the myths. I am now in the process of being diagnosed with ADHD and, since it tends to run in families, I now worry about my little ones. I may have to walk down this path myself in a few years. And I'll have to find a balance between privacy and publicity.

Alison May said...

@Rivka... Thank you for your comment, I can't tell you how lovely it is to know that you care enough about Finn and I t offer me the benefit of your own experience: you have indeed made me think about the consequences of discussing Finley in any light at all on an open forum such as this blog and I do believe that in the future I will always be careful about what I say about my son with respect to,as you so rightly pointed out, his personal privacy, because he is more than a child: he is a little person...

So on the one hand I absolutely agree with you: it has long been my intention only to write about him while he is little enough not to be embarassed. I don't want him to feel that his privacy has in any way been compromised by my actions and I have always tried not to make Finley the focus of BrocanteHome.
That said, Finley is a part of my life, and writing about that life as genuinely and authentically as possible is both how I make my living and how I hope I show other women how important it is on a platform like this, to not perpetuate the myth that we all lead perfect lives...

Writing about how mothering Finley is difficult without explaining exactly why, could be mistaken for whingeing or griping and I would rather it be put into context, so his behavior, my reaction to it and indeed the way it shapes our lives, is judged from an educated stance.

Furthermore Nicole is also right: we have to widen the debate to allow behavioral differences to be both acknowledged and ultimately accepted, and I truly hope that what little I see the need to say in the future will be welcomed within a trusted environment and will help others battling against systems they don't understand to see that occasionally there is light at the end of the tunnel and that it is more than ok to seek support within a trusted network and indeed to be a loud, mouthy, persistent advocate for your child...x

Gena said...

Well said Alison,I totally agree,also if we are honest isnt this little blogging community a place where we women can share and care about each others lives without broadcasting our feelings to 'the man in the street' for want of a better phrase,its sort of a virtual sisterhood,where else can I confess that I have been crying for an hour because the blues have landed,or I am sporting a pair of knickers which to my horror are back to front!I couldnt say these things to the Mummys in the yard could I? I know how good a mummy you are and I feel certain that you put Finlays needs before everything else.

Domestic Accident said...

Ah, I love it when there's unexpected synergy. My son, now 8, has sensory processing disorder. Amazing the progress he has made.

Anonymous said...

I have been reading your blog for a long time and have commented a few times. I love your writing and how you describe Finley. He is absolutely gorgeous. I did my share of reading "The Spirited Child" when my daughter Marielle was young. She just seemed to be so much more exhausting and sensitive than the other kids...she is EXTREMELY sensitive and now at 10 years old, this is what makes her so much of who she is and that is...a wonderful, caring, bright, exasperating, energetic, amazing writer, reluctant reader, beautiful dancer and gymnast. She is awesome. I love her the way you describe your love for Finley. Don't let the educational establishment take any of Finley's traits and change them to what they feel are the "good" ones for the the "school setting." Thank God for Finley you are in his corner. So many kids don't have a parent like you. Sincerely, Patti from Livonia, Michigan

Kate said...

I'm glad you've finally found some answers. The Spirited Child was like a lightbulb being switched on for me, it described my son perfectly. He's since been diagnosed with Aspergers, but has many sensory issues. I hope it isn't out of place for me to mention this, but it might now be worth investigating whether Finn would qualify for disability benefit (health professionals don't always inform you of your rights to benefits) - and if so, you would probably also be entitled to carer's allowance. The extra money can be really helpful, whether it's for fixing the damage that the child has inflicted on the house (oh my poor poor home!) or paying out for particular therapies or equipment that could help him (even things like swimming lessons or gymnastics/martial arts to help with balance and coordination). I would definitely advise you to get help with the form, talk to other mothers who've applied, as it's a humdinger of an application, but worth doing if your child will benefit.

Mijk said...

We've been struggling with our just a little bit different kid and your discroption of Finn took my breath away. I might be on a lead now..

gwendolen said...

Bless you for giving him your unconditional love and acceptance."Different" doesn't equal "wrong"...
You inspire me.

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