Difficulty Rating: Intermediate

Once upon a time, I was foolish enough to say aloud “I’m finding this hard”. The really disappointing thing was the reply I got was “well children are hard work”. As if it’s the same thing!

So I didn’t say it again. I kept my mouth firmly closed because I realised that most people have no direct experience with special needs, even some of those working with SN infants don’t really know what its like to live it, not really. So I don’t tell people that its hard, not unless they ask. And depending on how much I think they are interested will depend on what I tell them.

For those who are honestly seeking an insight I’ll tell them it’s the hardest thing I ever thought I would do…but also the easiest and most joyful thing because I completely adore my little girl. I’ll say its painful and fearful and hugely demanding as well as amazing and rewarding and magical. I might tell them I have cried many more happy tears that I ever did tears of frustration or uncertainty. I’ll say we are positive and celebrate every tiny achievement as each victory is a victory for all of our hard work…just the same as any negative or throw-away  ignorant comment cuts so deep, a slap in the face of all the sheer amount of effort we put in.

I say we thank our lucky stars that things are the way they are as life could be so much harder.

And to the people that ask for the sake of nosiness or small talk? I’ll tell them;
Difficulty Rating: Intermediate


Happy Update

I’m really pleased to be posting that our trip to London to try the Anat Baniel Method was a success! We have seen immediate results and we have plenty of things to be getting on with so all-round happy!

I can’t tell you how it felt for us to be told our little one could be helped, had loads of potential, was sensitive, bright and clever. Of course we already know, feel and see this every day…but to hear it from people who could offer us all the chance progression was so warming. We worked on sitting, head control, reaching, rolling, weight bearing down the arms working towards side sitting and rising to propping up on the elbow.

Already we are seeing the small person using her right hand considerably more. Previously this was 1/5th – 1/4th of the time compared to the left, now it is easily 2/3rds – 3/4ths of the time compared to left. Her head control is stronger which is very apparent when she is in a back carry. Every day we are seeing more and more weight bearing down her arms and she is very much enjoying the process of learning to side sit. I just can’t believe how fast she is coming along now! So, lots to do now, and we are looking forward to going back as soon as finances allow.

So for now, I’ll leave you with a photo x

Learning to side sit

I’ll buy you a telescope….

….if you can’t see the stars….

And I wouldn’t have it any other way.

Living with an extra needs child is both challenging and inspiring. Some times I have low moments, but they are far outweighed by the sheer delight and immense pride I feel every day. I honestly believe that for some unknown reason I have been chosen to experience more joy than any other parent I know.

My little girl is shining, she radiates love and laughter, she is a star on Earth.

Good Times

Wow, lots of views these past few days! There’s been lots of interest in my ‘Extra Needs & Babywearing’ piece so I plan on blogging some more on this subject in the near future.

My beautiful Rockpool lampwork pendant arrived, so pleased with it, my photo just doesn’t do it justice. Now just need to find the perfect chain! The only problem is my little person is fascinated with it, I just need to figure out how to keep it out of her hands…and her mouth!!

I have also finished my appliqué cushion, it is far from perfect but was great fun to do and I can’t wait to do more.

The small one is also having a busy couple of days, we went to hydro yesterday and we have physio today. She LOVES going in the pool and splashing around. I, however, found it exhausting trying to juggle a small toddler, getting us both dry and dressed without being able to put her down or sit her up! But it’s so worthwhile to see her smiling and laughing…she makes my heart melt every day. I am so incredibly lucky.

The million dollar smile

Glass pendant from Lush Lampwork

Leaping hare cushion

“Extra Needs & Babywearing”…what I had to say…

So I finally emailed off my written piece on special/additional needs and babywearing a few days ago. I’ve been struggling to decide whether I should publish it here, but I’ve decided to go for it, maybe it might give others an idea of what its kind of  like for us.

My name is Sarah and I gave birth to T* 33+1 weeks into my pregnancy. T* has recently turned 2, she is very short sighted and has developmental delays which currently means she cannot sit unaided, is immobile and her speech is also quite behind. On paper there is reference to ‘evolving Cerebral Palsy’ but currently no formal diagnosis. For T*, this means she lacks core muscle strength, has poor gross and fine motor skills, and experiences tightness through her body.

T*’s difficulties have meant that babywearing is a major part of our lives. As a baby she was uncomfortable on her back, she would startle and panic without support and her body would be rigid. Using a pram was out of the question so it wasn’t long before we were exclusively babywearing. We found that as long as she was being carried her little body was soft and relaxed. Her physio commented that the carrying was helping to keep her open through her hips, where babies like T* tend to be very tight. We also find we can fulfil her need for movement and involve her with every activity, she is always physically supported and being near to my face she can always see me clearly. It’s very important for us that our slings have adequate height, especially for back carries as T* has a tendency to arch her back. Seat darts are always a plus and we really like the curved top on our SSC as it means T* has a bit more support when arms-out. We are late to wraps and now find as she likes her arms out that she is too long in the body to wrap high enough to support her adequately. Front carries in a wrap are a different matter, with a hand to help steady her she reaches to either side, likes to help put food in the shopping trolley and get into everything. Not bad for a little girl who had her hands curled in permanent fists! Babywearing has provided T* with endless opportunities to see, experience and be stimulated, it’s been amazing watching her grow in confidence and actively initiate social interactions with strangers from the safety of her sling. And despite our physio once suggesting that T* may not be able to co-ordinate her movements sufficiently, she can walk with support and will soon have a frame….for me, there’s no doubt that being worn has been a huge factor in all of T*’s improvements. And on another note, baby wearing has enabled me to get on with a few things I enjoy doing, knowing she is up on my back, participating and enjoying as much as I am.

When you are the parent of a special needs child its pretty hard for other people to relate to you. Even family and friends say the wrong things and that’s if they acknowledge the obvious. Doctors and other HCPs are sometimes outright thoughtless. It’s upsetting, especially in the early days when it’s all a bit raw and you are feeling overwhelmed and hugely protective of your child. I just wanted to be spoken to kindly, without too much emphasis on my little girl’s challenges (I try not to use the word ‘problem’). I don’t like people talking about T* as if she’s not there or making assumptions about our limitations. I appreciate a ‘can do’ approach and someone listening to our needs. T* hated being touched by strangers for a long time and her impaired vision means she often doesn’t see people until they are very close, so being respectful of her personal space is paramount! I know the future is uncertain and progress comes in fits and starts, I never expect other people to understand what we are going through, but it’s very much appreciated when they treat us with empathy and sensitivity.

So, there is it. I hope that the course finds this useful! And I hope you do too xx

Brain Strain!

A few days ago I was asked if I would write about my experiences of babywearing and special/additional needs. Of course I said yes, what I write is intended to be given to participants of an advanced babywearing training course, who, once qualified, with be babywearing consultants.

The subject should be easy, but actually, its quite complex. I’m not just being asked about my experiences of  babywearing, but also about the interactions I’ve had with various health professionals, and how I would like those interactions to be.

So, lots to think about. I’m making notes all over the place so at some point I’m going to need to put them altogether and come up with something comprehensible. I just hope I can manage to put together something useful!