I have a special little girl in my life. She is four. She is vivacious and gorgeous with enormous blue eyes and blonde curls. She looks at the world with awe and enthusiasm and dives into everything with joy and energy.
She is also one of those kids where Health Visitors remark, “Is she always like this?” or strangers comment, “Blimey she’s a handful.” A child that other children sometimes see as naughty, and probably other grown ups too, and it’s hard.
This year has been the toughest year imaginable for my brother and his wife. My little niece ME was displaying behaviour we couldn’t understand and was so difficult to handle at times. She’d push Miss M over, pull another child off a chair, or step on them as she walked by. She was impossible to ‘control’ as much as you can control any child of 3 or 4, but also destructive and seemed to ignore attempts to guide and help her, whether they be reprimands, or rewards. Believe me she had much more of the second but nothing seemed to really work.
She didn’t welcome signs of affection or love and found these equally hard to give. In so many ways she was distanced, unreachable and we didn’t know how to help her or how to help and support her parents. My brother and his wife tried everything. They couldn’t have been more positive or loving or persistent but still she seemed a mystery.
I think it became more noticeable as Miss M’s speech developed. Miss M is 8 months younger than her cousin, and while her speech was fairly lucid most of the time, ME’s was generally impossible to understand. Funnily Miss M was able to understand a lot more and would translate, or she and ME would share converations that we just couldn’t take part in. It was at this time that my brother and sister-in-law decided to look into her speech, and also her hearing, and as more and more investigation was done we realised why our little ME had seemed so lost.
ME had severe glue ear in both ears and could barely hear us. She was lip reading, but an eye check also proved her to be very short sighted which meant that lip reading was also very difficult for her. She couldn’t hear that tone in our voices that let her know we were unhappy with her behaviour. She couldn’t see our lips unless we were very close, and didn’t understand why she was reprimanded for shouting, probably as she had no idea her voice was loud.
To add to this, ME also fell over regularly and seemed not in control of her limbs. She threw herself, literally into everything but almost daily hurt herself or others in the process. After Assessment by an Occupational Therapist we now know ME has DCD, Development Co-Ordination Disorder/Dyspraxia.
She is one of the rare few with this condition who actually have fantastic fine motor skills. She can do jigsaws quicker than you can get them out of the box, thrives on intense and firm physical feedback and adores sports, drawing, building and taking things apart. But place her in a room she is not familiar with and it can be completely disorientating for her. She cannot judge where she is in relation to other things or people and also has no idea how much pressure she exerts which is why she breaks things easily or hurts other children with a shove that was just meant to be a pat on the shoulder or a nudge. She ‘feels’ things differently to how someone without DCD would ‘feel’ it. When I was gently stroking her face a few weeks ago and she turned and held mine in her hands she squeezed so hard, but even though I tried to explain ‘gentle’ to her, the pressure on my face was still the same, even though the look in her eyes was soft and sweet.
It broke our hearts to realise that ME had been lost in a world that she couldn’t hear, could barely see and had no way of expressing her feelings about as language was inaccessible to her, though her understanding was high. To add to this, she was also unable to judge where she physically was. She had become increasingly scared of the dark and we realised that darkness meant complete isolation as there was no feedback at all. The covers were too light, it was silent and still and there was all consuming blackness. It must have been terrifying. The only way she could make herself heard and known was to be loud, rough and destructive, all things that invite negative feedback, and the frustration and fear she must have felt then is now very clear.
In May this year ME had gromits installed to treat the glue ear. Around the same time she had tiny purple glasses, and over the next few months she just grew. Four months on and her speech is clear, she listens (most of the time, come on, she’s four) and her confidence is growing. Her smiles is as big and bright as her eyes and we are all learning ways to help her contain her frustration, develop her skills and enjoy being physical in new ways that are rewarding for her and others. Most of all she has learned to cuddle and she gives the best squeezes ever.
We know there will be struggles ahead, but our ME is a fighter and she will be ok because she is loved. We just have to make sure she always knows that.
I’ve planned to write about my little niece for a while but it always felt too hard or too huge before, but today my mum showed me a poem my brother and sister-in-law had found and it was so perfect I had to share it, and her.
Build me a Bridge
I have known that you and I
have never been quite the same.
And I used to look up at the stars at night
and wonder which one was from where I came.
Because you seem to be part of another world
and I will never know what it’s made of.
Unless you build me a bridge, build me a bridge, build me a bridge out of love.
I long for the day that you smile at me
just because you realize
that there’s a decent and intelligent person
buried deep in my kaleidoscope eyes.
For I have seen the way that people look at me
Though I have done nothing wrong.
Build me a bridge, build me a bridge,
And please don’t take too long.
Living on the edge of fear.
Voices echo like thunder in my ear.
See me hiding every day.
I’m just waiting for the fear to lift away.
I want so much to be a part of your world.
I want so much to break through.
And all I need is to have a bridge,
a bridge built from me to you.
And I will be together with you forever,
and nothing can keep us apart.
If you build me a bridge, a tiny, little bridge
from my soul, down deep into your heart.
By Thomas McKean
Soon will come the light:A View from Inside the Autism Puzzle
October 1st, 2008 at 7:05 am
I’m so glad she has a diagnosis and treatments in place!! What a terrible thing for such a sweet, young girl! Have the glasses themselves helped with her coordination?!
Anyway, I am so happy she’s getting better and finally – understood. Hooray!
October 1st, 2008 at 7:08 am
I loved your story. I remember when I found out my boy needed glasses – how glad I was to help him, how bad I felt I hadn’t picked it up before.
She is lucky.
October 1st, 2008 at 8:10 am
This little girl will be absolutely fine with such a wonderful family around her. And what fabulous blue eyes!
October 1st, 2008 at 8:20 am
What a vivid picture you paint, Jo! I can just imagine how lost she was! So glad that her parents were able to be so loving with her despite, and that the professionals were able to find what was wrong and help so much! What a beautiful poem!
October 1st, 2008 at 9:21 am
Oh Jo! What a great story! I am so glad that ME is doing so much better!And that is a beautiful poem.
October 1st, 2008 at 9:30 am
What a relief it must be to her to have her hearing and vision improve – whatever struggles lie ahead, she sounds like a trooper, and having those 2 important sense back on her side, so to speak, will make a huge difference.
October 1st, 2008 at 11:28 am
Okay….so I was crying BEFORE the poem….and then the poem put me over the edge. sigh…
My heart hurts for all the lost time…..I’m so glad that things are getting better for her though. So glad that she is getting the help she needed to be successful.
Hugs to you and your brother’s family.
October 1st, 2008 at 12:08 pm
Oh how wonderful to have solved this and given this adorable child a new lease on life … like Corey I feel sad she spent so long so isolated ….
And what a beautiful poem…….
October 1st, 2008 at 12:36 pm
*wiping the slobbery tears off my keyboard*
ahem- how sad and scared she must have been. HUGS
October 1st, 2008 at 4:19 pm
What a beautiful post. I am so glad you shared this. That poem is so perfect and speaks volumes. I am really happy for ME that you and your family were able to get a diagnosis for her and some assistance. I hope she can forever build and walk on those bridges.
October 1st, 2008 at 4:28 pm
Geez! I’m glad she’s not my daughter! I would have gone along blithely just assuming she had an attitude. I can’t tell you how much admiration I have for your Brother and SIL for giving her the chance at life that she is entitled to.
October 1st, 2008 at 7:18 pm
Oh, Jo… what an incredible story; not only the facts, but the way you wrote it was beautiful. Well done… so sad at the beginning, but what a wonderful resolution. What a great thing that she could be helped and has responded so well. Bravo.
October 2nd, 2008 at 5:57 am
Beautifully written Jo, made me cry! ME’s a little star, she has a great family on her side, and friends who think she’s great too. xx
October 2nd, 2008 at 10:27 am
Wow, I’ve never even heard of glue ear before. But I’m glad they were finally able to understand why her behavior was how it was and that she has gotten the help she needs!
October 2nd, 2008 at 11:11 am
What a shame it took so long to diagnose ME’s problem. Still now it’s done it sounds as though she is coming along in leaps and bounds.
A lovely, thoughtful post you have done here Jo. x
October 2nd, 2008 at 2:08 pm
Fab, as always lovely Jo. These children are so challenging but every now and then the bridge does connect and for a short while it is possible to play pooh sticks together in the middle. Those times are so special, they help us put aside the difficulties and just enjoy the moment. Beautiful poem. Love to your bro and SIL x
October 2nd, 2008 at 2:12 pm
Sybil, it’s been rough but she is a wicked kid and she’s doing really well.
Cellobella, it’s been unbelievable, but it all makes sense now and she looks so cute in her glasses.
Adventuremother, she will be fine. She’s hilarious and so cool.
Kimberly, we;rs just so glad she’s getting what she needs now. She’s a really determind little girl.
Bubblewnch thanks, and the poem is fab isn’t it. It should be on the wall in schools or something.
Thalia’s child, it’s been amazing seeing her progress, like the first tie she was inside and hear bird song she had to ask what it was. It was awful but wonderful too.
Corey, hopefully there are many years ahead to catch up and blimey she’ll do it.
Daryl, it was a real battle for them, but they’re winning now. And the poem is perfect.
Lindy, that’s what gets us, she must have been so confused.
CrazyCath, that’s what we want, for her to just be able to live her life and be accepted and valued for who she is.
WT, there were times we did think that, and hell, who wouldn’t have an attitude in that situation, but she’s doing great and her mum and dad are the best.
Maureen thanks. I couldn’t write it before, but things are going so well now that it just poured out.
Rosie, thanks mate. x
Lilacs, it’s been a journey, but it’s been worth it for tis outcome. We feel so relieved and hopeful now.
Akela, it was down to my bro and sis-in-law that it was this quick believe it or not! Apparently it’s not normally discovered till they’re much older. Scary isn’t it?
October 2nd, 2008 at 6:48 pm
I am very sorry to hear that that little girl had such a rough start and I applaud her family for not giving up on her, but persisting in finding the solution to her problems. I hope it helps her grow up to be a lovely little girl who will be well liked by all and who will have lots of friends. Growing up is tough enough without the extra challenges.
October 4th, 2008 at 7:09 am
God I can’t even imagine what it must be like to realise what she had been going through.
Double squeezes for her for the next 10 years are in order I think.
October 4th, 2008 at 4:49 pm
This poem of mine seems to pop up on the blogs every now and again. I never get tired of it. At first it was just one of many hundreds of poems I had written. But over time, as I began to see people’s reactions, it has come to mean much more to me.
Thanks for posting this.
Thomas A. McKean
http://www.thomasamckean.com
October 4th, 2008 at 5:48 pm
Really moving post, Jo. We should all stop being so judgmental of children’s behaviour. We just don’t know what is going on inside. (non-judgmental, but still able to discipline as appropriate – that’s a tough line to walk).
October 5th, 2008 at 2:04 pm
I can’t believe I didn’t comment on this post Jo, I remember reading it for sure.
What special people you have around you. Count your blessings.
October 5th, 2008 at 8:13 pm
Poor cutie! Thankfully she’s been diagnosed now and you are seeing such improvement already. Let her light shine!
January 7th, 2009 at 8:01 am
Irene thanks, and that’s what we’re hoping for her too.
Xbox definitely. It was awful to realise what she’s been through and we all had a good cry at different times. Double squeezes are in store, and she gives the best squeezes.
Thomas thank you. It is a brilliant poem and just said so much to us. Thanks for the comment and for sharing your poem.
Iota that balance is so hard sometimes, but I hope I stop and think more before I judge now. I think we’ve all learned alongside her.
AOJ, I have the best family. If anyone of us are in trouble the rest are there in a second.
Nola, she is shining and smiling and learning. It’s so good.