Posts Tagged "speech delay"

Mama – part 2.

Posted by Josie on Apr 20, 2010 in Uncategorized | 20 comments

Mama will you hold me?

Close in to your neck where we fit together so well.

I do not say your name, but I breathe it through my smiles and bright shouts. I say it in my hands on your face as I look at your eyes, open wide, wet and tired.

I am bigger than last time. I have learnt so much. So have you mama.

I have so much to say these days, and you listen, you listen so good. You do not miss one word I say.

You let me fill the space with my words, over and over. My sounds that I love. I know that they are not the same as your sounds, your words, but that is ok. We are not the same, we don’t need to be.

You get that sometimes I need to say the same sounds again and again. The run through my brain, as fast as my legs on the grass, and you KNOW how fast they can go now mama. They run out, and saying them makes me feel better. I love my sounds, I have a sound for everything. It is my thoughts, coming out my mouth to show you everything I am thinking, because you can’t see can you? I have a lots of thoughts, so I have a lot of sounds too.

Sometimes my lips are itchy, they need to play, they need to brrr and brrr as I run around. I like the vibration in my head.  Singing my song, over and over, it makes me happy. It is a good song but it is stuck in my head. Maybe I will sing another song if I find one I like better. Let’s make music together mummy, it is my favourite thing to do right now. You can drum and I can strum and we can sing and sing some more and dance and move and sway. I love to, I love to feel the rhythm in my feet and stamp it out.

I know it seems like we fight a lot, that I am mad at you. And sometimes I am. Because I have to be in charge mama, you know that. I have to make everything just the way I like, or else I get scared and cross. Why should it not be done my way? Why? It should, you know it should. I know better and exactly how everything should be. My way is best.

When I am mad it bubbles in me, just like real bubbles in bath that I say by the way they sound “brrrrbabum” with my fingers making the pop pop sound. The bubbles swirl in my tummy, they tell me I must NOT. So I do not. And my legs and arms, my body tell you so. They are better than words when you are cross, and so is the loudest noise that I can make. It says ‘cross’ that sound. It come from my toes and bubbles up and out in one big loud noise that makes my body feel better. If I kept it in mama I would explode.

You should try it. Maybe it would make your body feel better too.

I see by the lines that run down your face that you worry about me. But you shouldn’t, because I am a-ok. I am me and you are you. And we are the same but different. That is very special. And I don’t want to be like everyone else.

You look so tired mama, tired and sad. Maybe I will worry about you now. Because you know I love you, right? And that there is no other in the whole world that I want to be with every day? Maybe you have sounds in your head that need to get out. You should write them out, it helps, just like drawing my circles over and over helps me too. Make them pretty colours, your words mama, just like me, and make them real and leap and play and be free. Just like you let me be free too.

Mama will you hold me?

And then I can hold you too.

I wrote a post last night, which I took down again this morning in a silly fit of insecurity. I have put it back up again now. Thank you for those that commented and emailed, so much. And for these words especially:

“Josie,

I understand that you feel bad about worrying about your son. This is your wish for a mom who should only see his son in a perfect light, even if it wasn’t the case. the blind love… Your love is big. your love is the reason why you worry. You should not feel guilty about your worry. And you are not a bad mom if you think Kai isn’t perfect. You are not failing him.

You have a lot to give, and you are giving a lot already. You may not see it, but we all do. succeeding isn’t about achieving, but a lot about being. What you are Josie is beautiful. And I’m not talking about the outside and superfluous, but the inside, the depth, the sensitivity, the intelligence…

You know, what i think? I think Kai may help you overcome your fears of failing. It isn’t a easy task, Kai isn’t a easy kid. If he was an easy kid, it wouldn’t challenge you. You know, Kai may be your teacher. What I mean is that he may help you understand things about yourself. He may the “thing” you care so much that you will go all the way through and will eventually realize that love is strong, and that it is all that matters. You won’t be failing him when you love him. With love, you may realize, you have nothing to fear. I’m not saying love equals being a perfect mom. I mean that being a person filled with love, being honest and caring, and yes worrying, is what makes you a worthy person for your son.

I’m so deeply convinced, you are in fact the ideal mom for Kai… the moms you meet who are so sure of themselves and can “manage” their littles are SO not the right mom for Kai. Kai needs your sensitivity, your own painful experiences, your ability to listen, to tune in your inner self, to stand and raise above the differences. He will need that from you. And in return, he will show you that being Good and successful is not where you expect it to be. It’s already beautiful, Josie. How many do you know would improvise a gesture language to communicate with Kai? Your way to embrace your son for who he is and trying (struggling) to understand him is already beautiful, Josie.

There is beauty in imperfection. there is humanity. invaluable gift. You don’t see until it is in the ones you love so deeply.”

Thank you Eric. You will never know how much that meant to me xxx

Why I said no to the Health Visitor

Posted by Josie on Mar 20, 2010 in Uncategorized | 62 comments

Last week was our follow-up appointment with the Health Visitor to discuss Kai’s speech and various other ‘issues’. The last visit had not gone particularly well. She had stayed two long hours during which time Kai either played obsessively, refusing to engage with her or ‘play along’ with her direction, or had had a huge temper tantrum on the floor. I was tired, overwhelmed, intimidated by the note making in her book, by the questions and by all the spoken, and more importantly, the unspoken conclusions about the situation. When she left I felt exhausted, judged, and more anxious about Kai and what his behaviour meant than I ever had before.

Now, don’t get me wrong. My health visitor is lovely. We are actually very lucky to have her take such an interest in Kai and offer so much support. She has been our point of contact since Kai was born. She helped with breastfeeding issues, and supported during the long phase of chronic sleep problems and separation anxiety. I can’t say her advice has always been particularly useful but it was well meaning and I feel like she genuinely cares about me and about Kai and wants to help.

The last time she visited she was very interested in everything about Kai. She wanted to know about how he was behaving, about the speech, about his acute sensitivity to things, and she wanted to know how I was feeling about it all.

And I told her. I was exhausted and struggling a few weeks a go and when I saw her I had poured out my worries and about how difficult I was finding it to manage Kai and his frustrations. And she had listened, and wanted to help, so had started to talk about speech therapy referrals and monitoring and affirmed that yes, I was right to be worried and yes, maybe we did need to keep a closer eye on Kai.

This was supposed to make me feel better.

It didn’t.

The next couple of weeks I found so stressful. Everything Kai did panicked me a little bit. When we were around other children I was acutely aware at how behind his speech was and how differently he expressed himself. The times he got overwhelmed by silly things, or fixated on his sounds and routines, little alarm bells kept going off in my head. I was confused: one hand I had my health visitor and my own worries, on the other hand I had everyone telling me “He’s fine! All toddlers are like that” which, when I looked at him, I didn’t think that was true.

I’ve done a lot of thinking since then. I’ve read books, and talked to friends, and been contacted by some lovely people who have been through similar experiences with their children. I made changes, in our routine and in my thinking, and although the situation hasn’t changed I feel like I’ve got my head around it all so much better.

So when the Health Visitor appointment loomed this week I vowed to approach it with a very different attitude. Kai was asleep when she arrived, and stayed asleep which helped enormously. So I got to concentrate on what I wanted to say.

Kai is fine. I really believe that. He’s not doing things by the book but then he never has. He is complex and incredibly sensitive but that doesn’t mean there’s anything ‘wrong’ with him, or necessarily anything that needs ‘fixing’. It had dawned on me recently that how professionals respond to Kai is probably going to depend entirely on me. My prediction is that he is going to sit on the borderline of diagnoses and labels and how much professionals get involved, how much of it is labelled a ‘problem’ is going to depend on me and how well I feel I am coping with Kai, and how much I feel Kai is coping with the things around him.

Right now we’re doing ok. It’s not easy, by any stretch of the imagination, but I’m well supported and, if given the situations and environment that suits him best, Kai is happy and thriving and enjoying life. Yes, that means avoiding very overwhelming situations and certain ‘triggers’ but that’s ok. We’ve been meeting up with other children in quieter situations, on a more one-to-one basis and although still problematic at times, it is working well and Kai is much happier and calmer around them. As you’ve seen, we’ve been using signing to give Kai a new way to communicate, which he has loved and picking up at a rate of knots (can’t believe we’ve only been doing it a month!), and although the speech is still an issue he is communicating his thoughts and feeling beautifully with signs, gestures, and his own language, which, once you know him and the way he thinks, is amazingly expressive. We’ve even begun to get some consistent sounds for things, that although don’t always sound much at all like the word their supposed to, sound enough like it for us to know what he means and show he’s trying to form words and copy sounds.

So when the Health Visitor asked, was I worried, did I feel like we needed more help, I said no. I said I wanted to wait and see.

And she agreed.

We’re going to give him time. Time to carry on figuring it all out for himself and doing things his own way. Problems don’t need to become problems unless they start affecting his daily life significantly. Perhaps when he gets to nursery age we will need to think again. I would want any remaining speech issues dealt with before they started interfering with his enjoyment of school, for example.

But right now it’s not necessary. They’re going to see him again in six months to reassess and even then we don’t have to do anything unless I or they feel that intervention at that point would be crucial, and I doubt very much that will be the case. He is so young, and I don’t think early intervention at this stage would be helpful or even wise. I’m not saying that would be true of other children in Kai’s situation or who have speech difficulties, but I don’t think it is right for him.

I feel like a huge weight has been lifted.

I feel like I’m looking at him differently. Stepping away from the big play groups has helped, from situations where we’re surrounded by other children and you can’t help but start comparing. When I look at him, it’s less through someone else’s eyes. I’m seeing less of what he’s lacking and more of what he has. I’m astounded and delighted by little things he does every single day. Bowled over by his perceptiveness, his imagination, his curiosity and determination. I could regale you with stories of all the astounding things he is doing every single day, and maybe I will. Not big things, not flashy or showy, but expressions of a rich and interesting personality and of a child that has an amazing way of thinking and engaging with the world

I’ve been overwhelmed these last few days with a new feeling and last night it dawned on me what it is.

God, this is going to sound awful, awful that this should be a new feeling after 20 months of motherhood! but…

I’m proud of him. I’m really, really proud of him. Not just of something he’s done, of course I’ve felt moments of this kind of pride, but proud of HIM, of who he is.

For the first time maybe, I don’t want to change anything about him. I’m not wishing for him to sleep better, or to learn to talk, or to stop with the temper tantrums, or to be less sensitive, or more easy going.

I just want him to be exactly who he already is.

Because it’s pretty wonderful.

Learning to pay attention

Posted by Josie on Mar 16, 2010 in Uncategorized | 41 comments

I know I talk a lot about how hard I find things with Kai some days. I’ve become so aware of the negative voice into which I seem to slip:

“I’m exhausted”,
“He’s so difficult”
“Why does he have to make everything so complicated?”

That’s me off-loading.

I need to do it because he is difficult. But it’s only one side of the coin and I’m beginning to see that the other side is far richer, and far more significant. It’s a side I need to concentrate on more, need to talk about more. Because it is the ‘good’ things that define Kai far more than the ‘bad’, and actually affect and enrich our time together far, far more.

This post is about one of the good things. One of many that make my boy so special and being his mother, being in his company, such a privilege and such a gift.

I realised something recently. Kai’s lack of language is forcing me to pay attention.

Without a simple word or words to hear, understand, maybe instantly dismiss, I have to become a detective, hunting for clues of meaning. The body language he uses, the intonation of his voice, his gestures and made-up signs. What is he telling me?

Kai is incredibly sensitive to noise at the moment. It’s his big obsession. Sounds seem to affect him in a multitude of different ways. Of course there are the bad noises, the ones that make him quiver and shake and cling and scream. Or that will seem to mesmerise him and leave him wired and overstimulated for hours afterwards. The hoover’s the biggy here, and the food processor and the hair dryer and the shrill noises on some toys. These sounds cause frustration and tears and stress.

But then there are the sounds he likes, the sounds of sirens in the distance or aeroplanes in the sky, or a dog barking, or the sound of a bin lorry or a million other different noises he will detect in his environment instantly, no matter how quiet or how much background noise there is. His little eyes light up, he cups his ear and excitedly he will grab and point and dance and babble to tell me in his language “Listen Mummy! Listen!”

And listen I do. And I hear the thing he has heard. The thing I have nearly always failed to notice. And with my boy we will hunt for the source of the noise, scanning the sky, or stopping to work out which direction it’s coming from, or listening to what the dog might be saying and if another will answer back. And when we work it out I will share in his glee and his excitement. If it’s music that has caught his attention I will pick up on the sway and bounce of his body as he tries to find the rhythm, and I will listen to the beat and the way the music fits together.

I’m getting better at the listening. I’m getting better at picking up on the source of his interest. I’m hearing the bird song and the sound of the wind.

Did you know that the world is filled with such beautiful and fascinating sound?

Of course there are the visual interests too. What it he has seen? What is it that has caught his eye and his attention? A cat darting under a car, a bird on the TV aerial, a bus or a digger in the distance, the light flashing on the answering machine. Again, all things I wouldn’t have noticed. Again, all things I am learning to see.

I am getting better at looking. I am getting better at noticing the tiny details. I am seeing the shine of a treasure in the hedgerow and the way the leaves dance in the gutter.

Did you know that the world is filled with such endlessly intoxicating things to look at?

Why would I want to change this way of perceiving the world?

Yes, the lack of language, the sensitivity and frustrations Kai experiences, sometimes they make my days more exhausting and overwhelming than I feel like I can handle.

But in the moments in between, when I feel like this boy is opening my eyes and my ears in ways I never could have predicted, I am so glad of it all, every little bit.

He is making me a better mother. He is making me a better person, and a better writer too. I really believe that.

And I am so grateful for it, so grateful for him.

What have your children taught you? How has responding to their personalities and their needs changed you?

Right Now

Posted by Josie on Jan 29, 2010 in Uncategorized | 49 comments

You have all been so lovely the last few days. The comments on my post about the Health Visitor’s worries about Kai have been endlessly comforting and supporting and I am so grateful for you taking the time to respond so thoughtfully. Thank you.

I had a bit of bad day with it all yesterday. Actually, I had A LOT of a bad day. There were moments there were I could genuinely have opened the front door and run as fast as my legs could carry me.

I didn’t, obviously. Instead I wrestled the ferocious ball of frustration and bad-temper that is my son till bedtime, put him to bed without a bath and went downstairs and cried. And cried. And cried some more.

I doubted everything yesterday. EVERYTHING about myself, about Kai, about my abilities and suitability as a mother, about my perception of my life and how perhaps that differs from reality.

And do you know what scared me most? That maybe there is absolutely nothing wrong with him at all. That he is just spirited, and wilful and frustrated with the world  – no different from most other toddlers.

And weirdly, this made me feel like shit.

I convinced myself that every toddler is like Kai, that all mums have to manage behaviour like his, and as such, the fact that I’m struggling to cope with it so much means I am just weak, neurotic and failing miserably. You probably have three children like Kai. Ten. And you still manage to do normal things like brush your hair, and eat, and go out.

Everyone tells me he is delightful, and fun, and charming and he IS! Maybe what I endure behind closed doors I have blown vastly out of proportion.

Maybe I am just not cut out for all this at all.

No, don’t get me wrong. I don’t want there to be anything ‘wrong’ with Kai. It’s just that the thought that it is supposed to be like this, supposed to be so impossibly hard and feel so unmanageable ALL THE TIME just made me go cold.

Luckily, I have good friends. Good, kind, honest, supportive friends who listen (and I could list hundreds of you, thank you so much).

I have a husband who has been through it all with me and keeps me grounded.

And after being told an awful lot of sense, I realised this.

Do you know what? Kai is hard work. He is really, really hard work.

I’m not saying its some kind of competition about ‘who has it the hardest’, or that other parents don’t find it hard either,but the reality of life with Kai is incredibly challenging and I don’t think anyone could question that.

He’s always been hard work – early months of constant crying and refusal to be any where but attached to me, followed by endless battles getting him to cope with transitions and change and him resisting everything. The speech delay and the near-constant tantrums and the freak outs at the slightest thing are just a continuation of something that’s been going on from the beginning.

He can be lovely of course. He is obviously bright, and can be so much fun and entertaining. He charms everyone around him and can be fabulous company. He plays beautifully, when in the mood to, and if you get it right with him you get it SO right and it is wonderful.

But this is offset by the most rigid personality I have ever come across. It is offset by moods completely dependent on things being just how he wants them to be and endless frustration and tears and anger when they are not. And I can honestly say? The hard times far outweigh the good times right now.

I am not enjoying motherhood right now. It’s not much fun to be honest.

A vast proportion of my day is spent ‘coping’ with Kai, managing his moods and single-minded determination and enduring the frequent screaming, crying, hitting, pulling, outpouring of his emotions. Every single day involves a good deal of time listening to long bouts of crying. It’s incredibly draining, exhausting. And I defy anyone to not find it hard.

And the speech thing IS worrying. The constant, weird, babbled gobbledegook? The fact that has somehow ‘forgotten’ how to say the odd word he could say a few months back? That he makes NO attempt to imitate words yet will copy the sounds he hears himself making on recordings? Of course it’s worrying. I’m not saying it won’t right itself, I’m sure it will, but obviously it’s going to be a concern to me. What kind of mother would I be if it wasn’t?

Whether he fits some kind of ‘label’ or not, whether he is like other kids or not, whether I find it harder than you or anyone else? It doesn’t really matter. Deep down I know it will be fine. I know that he will be fine, that he will grow out of most stuff, and we will survive. I know that really I am very lucky, he is healthy, so am I. I know it could all be so much worse.

But it doesn’t change how hard it is right now. It doesn’t change how much I am struggling.

What matters is I love him. I love him so much it actually hurts me to think about it. I see so much positive in him, despite all the bad stuff, and I am so enormously proud of him, of his fierce strength and passion.

I know I am doing the best I can, I know I am doing a good job, even, because I care about all this stuff and I think about it and I want to make Kai happy.

I just want to be a better mother for him.

I want to figure out what is he needs that I seem to be missing.

Mostly, I just want to see him happy.

And I want to see me happy too.