Talia takes a few steps in her walker

Tália has taken her first steps to independence - it is so great to see her able to start to move around on her own. This feeling of independence is like magic to her confidence. Take a look at this video. She is no longer strapped in to her walker and able to move it on her own. Looking back at the girl who could barely move, this video has given me great inspiration. Tália is such a cheeky girl with so much personality - she is now able to express herself better and her smile and good nature is infectious. She brings us so much happiness. Thank you to all you readers for sending her positive messages and prayers - I have no doubt that they alongside Tália's hard work with all her fantastic therapists have helped her to get this far.

A Carer's Identity

Who am I?

Whilst I love caring for my daughter and family, I recently feel as though I have been through a bit of an identity crisis. I share this with readers as I want this blog to truly reflect what we mum's, parents, carer's experience. I think that if we share our good and bad times, then others will not feel so alone.

And how can one feel alone if they are surrounded by so many? I told my husband the other day, 'I feel so alone' and his answer was but 'I am here with you, sitting in the same room'. He didn't quite see what I meant by alone.

Being a carer is rewarding, don't get me wrong but it can also sometimes alienate you. As my daughter's mum, I have a huge responsibility - it is my decision usually if we go for any medical treatment, my decision as to what she eats, sometimes this responsibility can be intense. Whilst there are often more than one person making a decision, ultimately, usually one guardian or parent makes that final choice. It has to be that way for as children have greater needs, the needs for finance are greater, the needs for bigger homes or adapted homes increases, the need for help increases, so basically you find that in a couple scenario, one parent tends to take on the carer role and the other the family provider role.

Because of this focus, as a carer, you can become lost in that world. You become your child's mum and carer. You adapt that role and sometimes instead of playing the role, you become it. In doing so carer's often feel lost - if they are carer, mother, helper - what are they? Sometimes people see you as that. They are suprised if you are out alone.

However whilst playing the role of a carer, one must not lose their identity. My focus has been so intense that I got a fright when I looked in the mirror the other day. I look different - bigger, duller, tired and haggard. It hit me then that this would not help my Tália. How could one be a good carer if they can't even care for themselves?

It dawned on me that I had kind of lost the real me. I know that many talk of the duality of a carer but I think it is important that carer's do regain their identity and try to get time out from time to time. Seek support from loved ones surrounding you - I reach out to my mum often. Be open and honest.

If you are friend to a carer - be it someone caring for a special needs child, cancer patient or elderly, sometimes a big hug and a simple, 'I understand how you feel' can help. Carer's also need to be cared for - they need to be acknowledged as individuals.

Physio is and should be fun

Tália loves her physio sessions. Ana Duarte has been a fantastic therapist for Tália. She has always encouraged us to integrate the concepts into everyday life. Tália is lucky to have such a loving team. In the mornings, she goes to nursery with Alicia, who works with her and is a physio, training under Ana Duarte.

Alicia, lovingly integrates Talia´s physio into her everyday activities. Simple activities like lining up and going into the gym or sitting on a potty etc. The last three months i have seen a real difference in Tália as physio has been integrated. At home we are trying to integrate it into play. Look how much fun Tália had in the park in the video below. In actual fact, her Dad discovered a way to work on Talia´s balance by using the climbing frame. Tália usually can only stand on her own for seconds at a time, yet this exercise forced her to hold her own.



I would really like to thank Ana Duarte and Alicia Martin Garcia for there support and for believing in Tália. They have encouraged us as parents to work with Tália and they continue to do it all with so much love.

I have just been thinking that this page needs up-dating. I have been so focused on ONYOM that I haven't given this page enough thought. I have missed blogging here as this is like a diary for me - a place where I record all of those special incidents and share my feelings.

Tália is doing well and crawled four steps forward for the first time ever yesterday. I am over-joyed. We all take moving for granted and just to see her able to move and grab toys makes be so happy.

I also wanted to share this video with you - mum has been doing yoga with Tália and she just loves it so much. Take a look.

Its been a while

Well, its been a while since I last wrote. I have been working behind the scenes as we want to launch ONYOM before the weekend. You will also view this blog on the Onyom site.

Well, we have had a really good month. Tália started nursery and we are about to complete her second week there. She seems to have adapted amazingly and she seems to have really come on in leaps and bounds. Her tactile defensiveness has improved and she can now paint without screaming. Yesterday, she coloured a picture without being forced, all on her own. She can hold her toothbrush on her own and brush her teeth. These may seem like tiny things but they are huge steps for us. Each tiny step is a step closer to her being able to integrate into everyday life. She is very happy in it and so motivated - her speech therapist is just amazed by her progress just from being with other kids.

Just when everything seems to be going smoothly...

Well, unfortunately Tália had a little accident last Sunday and fell off her potty. The potty is only about 4cm high so when she fell off, I thought nothing of it. I picked her up and calmed her down. However as the day progressed, I got more and more troubled. At first I thought her hip may have come out so I massaged it and did some exercises with her but then we noticed that she couldn't sit up and was wincing with pain. My husband checked her over and we concluded that something seemed wrong with her right shoulder. So we packed the whole family in the car and off we went to the Costa del Sol. We were very sorry to find out that Tália had broken her clavicle. They bandaged her up and we took a very sorry little girl back home.

The last few days, we have been house bound, nursing our little monkey into recovery. Sadly I had to cancel the extra horse therapy sessions I had organised for the Summer. However, Tália has been incredibly brave, laughing whenever distracted and quickly adapting to using her left arm. She has thankfully got back her appetite. Apart from a few problems with bandaging - (she woke up Monday morning purple from the tight bandage and looked really scarily swollen and then she had some sores under her arms) she has been a real star and I am hoping that we will be able to slowly venture out next week.

ONYOM - A NEW SITE FOR PARENTS

My friends Justin and Susan and I are building a website for parents with special needs Kids. It all started when I felt that my blog wasn't enough to encompass my journey. Through this journey I have met specialists, learnt about useful tools, got lots of on-line support - eg through Mitoaction, UMDF and Walking with Giants. I wanted others to get these benefits too. If I have so much to share, then so do many many other people out there. So it just makes logical sense to put our thoughts together. Never before has sharing made more sense. I constantly learn from other parents. They have been key. Regardless of diagnosis, there were so many common problems that broke through these labels.I have learnt from parents with Downs Syndrome, through cancer patients, via autistic kids.

Justin and Susan run a leading website and having seen my journey were keen to help me realise this dream. And so ONYOM was born...


The site we are building is slowly becoming a reality. We are hoping to launch in September - please help us to build up the information. Come and see us on onyom.com.

Physio is fun - Tália on her bike

As you know, I am a firm believer of making physio fun. Our therapist, Ana is incredible and always teaches me how to adapt everyday playthings into something that will both be fun for Tália and also give her the physio she needs. We had a tricycle from Imaginarium and she used to sit in it. For the most part, she was reactive. She would sit back, have a rest and let us take her for a ride. At first this was great, just having her hold herself up in the seat was a miracle. However, when Ana saw her, she showed us that by adding velcro to the pedals, or tying her feet on with a bit of ribbon, Tália would not only learn how to pedal but also get the full benefit of exercising whilst out for a walk. Also, she would become reactive andshe would be the one pedalling, holding on to the bars etc. As you can see in the clip below, I was just so excited to see her moving the pedals - also she touches the handle bars. Getting Tália to hold on to handle bars or handles is tough given her tactile defensiveness - she is over-sensitive to the feel of certain materials and things. However in this clip, she just looks like a typical toddler enjoying her cycle with her Dad!

My Baby can Wave

Wow, we seem to be really meeting the milestones. Tália started to wave. Up to now the only signs she can do are:
- Blow a kiss
- Wash hands
- Round and round the garden
- clap
Now, she is waving - and at the right time - it is not flapping around for no reason but a clear,´bye, bye' and she always uses it in context.

This is a great moment for us and means that there is lots of hope. This could be the start of her signing. A preious moment.

Tália is nearly 3 - since the age of one, we have tried to get her to wave. It just goes to show that we shouldn't give up - two years later and she has reached the goal. At times you think you will never get there - I din't know if Tália would ever feed herself, and she does, I didn't think she could use a potty, and she does...so many key things. These small milestones give us so much hope.

Tests and more tests

Well, finally we have sent off our samples to Zaragoza. Now we just need to sit back and wait to see if we get any concrete diagnosis. We sent blood, urine, mucous and eyebrow hair samples from Tália and myself. Between you an dme - the mucous sample was awful, they had to take a throat swab and it kept on making me gag. Just to think that Tali always goes through these tests.

The Costa del Sol were fantastic - they prepared it all for us. Obviously getting blood from Tália was difficult - we always have a hard time doing this, but the nurses were kind. I had to pin her down while they took the blood. The urine was somewhat easier than usual - now that Tália sits on a potty, collecting a sample is so much better than sticking those plastic bags on her.

Well, its over -I always dread bloodtests for her and now I cansit back and let it go!

Vibrational Therrapy

Tália has been using the vibrosphere almost daily since December. This therapy seems to have really helped her muscle tone. It also helps us to maintain her tone if we are unable to go to our physio sessions of if she is tired. The vibrosphere allows her towork her muscles without having to put inas much physical effort. For a child like her with energy issues,it has made a great difference in our lives.

The first step to walking and independence

Tália has just been given a walker and I am just so amazed but how she has taken to it. When I saw her taking these steps I felt very emotional - we are getting closer to the dream. She works so hard, day in and day out. It makes me so happy to see her getting closer to mobility and independence.

Speech Therapy with Mum

Do something about it

Well, yes I was feeling rather sorry for myself when I wrote my last post. I guess there was so much thinking to do that I felt emotionally overwhelmed. Also my daughter's (Natasha's)breahing has ben awful. We have found out that her adenoids are enlarged and she is presently on treatment - I am hoping that we can avoid operating. This problem has caused her to experience extreme tiredness, hearing difficulty and irritability. Anyway, now that we know what is going on, we are doing our best to help her.

Anyway I have snapped out of it and now I have decided to take the bull by the horns. I have decided to throw myself into understanding the science behind mito and try to understand how cells work. If the mutation that they have found in Talia proves to be pathological, then it will be the first of this type - can you believe it, truely unique...very bizarre really.

I am also going to attend a course in Madrid to understand a little more of the techniques and therapies used with special needs kids. Whilst in the middle of nowhere, I am close to many European Capitals and I am going to do my best to understand how the human body functions.

A tad insecure

March 22nd: Diary Extract
How do I explain how I feel? I don't want to worry too much yet today has really been a difficult one for me. I spent so much time trying to feed Tália and she would just put her hand in her mouth and pull it out again. On days like this I do question my decision not to tube feed. Usually I feel so sure and securein my decisions but now and again fear creeps in. I also know that fear can heavily sway a decision and that it can give us a blinkered vision, so I prefer to stay away from it. But today is just one of those days - I feel insecure. Our middle daughter (7 years old) has been acting up for a while - I think that it is because she is constantly exhausted. She has been very run down with a cold but today her teacher sent a note home saying that she was finding it difficult to read and breathe at the same time. Obviously when my other two girl are unwell, I get scared especially as doctors have said they could be mito carriers. However I am sure that it is just a cold and I wouldn't think twice about it if it weren't for Talia.

I guess its been a tough month for us - firstly March just reminds me of Dad - his birthday month and I am missing him terribly, secondly I had a beautiful holiday with my bro and family in Singapore - saying goodbye was very difficult for me. Thirdly Tália actually had gastro in Singapore and seeing her so weak was so sad. Fourthly we were forced to face education needs and questions. What do we do about schooling? Would she be integrated? For the first time in ages I have felt unsettled.