Friday, 12 December 2014

Resolutions

Resolutions
I’ll be honest, a new year scares me. I put so many expectations on it and when I don’t achieve them or versions of them I feel disappointment and let down. Next year I am going to do things differently. I am going to release myself from expectations and the pressures and make smaller goals.  Realistic ones. Something achievable with some way out there dreams too. After having a baby this year and learning how to embrace two children I had to loosen the grip on expectations of myself. Firstly, I’m going to take the opportunity to reflect on the past year and see how far I have come and where I hope to envisage the coming year.

Like most mums, every day has its challenges and it is constantly changing. I am a mother of two beautiful children. Faith who thinks hats should be worn all the time and Mr six months who is a busy boy but hardly ever without a smile. Faith has special needs. This year has been what we call ‘the year of communication’. We have seen her speech grow and her ability to communicate her needs, and definitely her wants. There were other areas I would have liked to have seen improvement but a big lesson I have learned mothering a child with high needs is to celebrate every step forward. Each triumph is going forward not stagnating or going back. Small steps.

This year we added to our family and what a joy it has been to have Mr six months join us. A blessing to us all with his placid and loving nature. There has been a lot of ‘firsts’ for us. We had cuddles moments after his arrival into the world and the simplicity of no medical intervention. The delight of how siblings relate to each other is magical. The loving looks and the sibling rivalry certainly has been useful for motivation and action.


Thinking forward, I want what all mums want and that is too see their children, grow, develop and reach their full potential. I am going to celebrate the small victories throughout the year starting with now, celebrating the goodness of the past year. We have all grown in numerous ways. The New Year has many amazing opportunities, fun, joy, becoming stronger through challenges and enjoy so many more blessings.  What possibilities it holds!

Friday, 5 December 2014

Sampling Freedom: Remote Control Car

'Let's move it'
'Everybody do it'
'Everybody move it to the left and right'

These are the words to the song that plays on this spanking new beauty. There are lights everywhere, twinkling like a carnival ride. There is a horn that has already had plenty of use bossing us around. 

We are yet to hook up a switch (button) so Faith can control the car by her hands. As soon as I can order one we will convert it. For the moment the car is controlled by remote with delightful squeals floating around the backyard.

We were pleased to discover the Squiggles seating system fits perfectly in place of the seat so we don''t need to modify the seating only the controls. 

What joy it is to see Faith be free, on her own seeing the world.

Friday, 28 November 2014

Patience is...



Patience is....


  • going with the flow when your kids decide sleeping at the same time is not ok.
  • in the middle of the night laughing not crying when the baby wakes and makes the older sister cry and continually waking each other until both collapse from exhaustion. 
  • realising that dust under the lounge isn't going to be cleaned any time soon.
  • the washing pile is never going to be small again and I'll never catch up with it.
  • generally not fun.
  • smiling when the kids are screaming in the car.
  • seeing the funnier side of life when everything is crazy.
  • accepting sometimes you can''t control everything.
  • learning to love each season of life you are in even if there are challenges.
  • taking small steps.
  • hope in yourself.
  • a day at a time, or divided into hours and minutes in our household. 


Patience is defined as 'the capacity to accept or tolerate delay, problems, or suffering without becoming annoyed or anxious. The Oxford Dictionaries




Thursday, 20 November 2014

Believe in yourself

Each day holds goodness. I just need to see it. It might be a new word or a new strength. This time it was revealed in Faith's speech therapy. The speechy and Faith play various games. This includes using her iPad. Faith's mouth opened wide saying 'I'. She is yet to master 'pad' but with help from the speechy, she can. It has different games that Faith loves. They were playing a hair dressing game. Faith would wash the man/woman's hair, blow or towel dry it, colour, curl, trim or lengthen. So many options. She was shown how to use the game first and after a short time understood how it worked. She just couldn't get enough of it. 

I must confess I often underestimate Faith. More and more I am seeing more of her personality. She is a little girl who at times struggles to help us understand her meaning. Her communication is improving and excitement grows in me looking at how far she has come. Faith desires activities to match her developmental stage not her fine motor skills. We need to find ways and toys appropriate for her. Perhaps even one of those dolls that she could learn how to do its hair so it relates to her new game. This afternoon we were looking through some colouring and sticker books and I offered Faith a crayon. She took it not realising she needed to hold onto it to draw so she dropped. We repeated  this process and with me guiding her hand, she made a scribble. What a positive achievement. She is blossoming in the search for her self.

Sunday, 16 November 2014

Becoming a chatterbox...and singing

About 15 weeks ago, our family started to raise funds for Faith's speech and physiotherapy. It has been hard asking family and friends for money as for so long we have managed with grants and the like but this time we could not sustain the cost. So with apprehension we designed a flyer and promoted it. We feel so blessed with the response we have had. Because of it we have been able to have weekly speech therapy for more than 15 weeks.

It is as we have opened a box with words and sounds spilling out.  And of course Faith's frustration of wanting to communicate more than she can leading to frustration tantrums. All part of the learning process. Faith has progressed faster than we anticipated. Firstly she started learning to use Proloquo2go and as she does, took to it speedily. Proloquo2go is a symbol-supported communication app that gives a voice to people who cannot speak. For Faith it helps her speech, allowing her to communicate her needs and wants while she is learning to speak. For example, she can touch pictures " I want bed/sleep" I want food/hungry" "I want to do things". It gives her more control and confidence. It gives her the opportunity to chat and explore. She zooms around the iPad with ease. I had to lock many features on the ipad as she would surf the internet, wander in iTunes, head to sites related to Peppa pig and watch Play School. She did delete Proloquo2go before I backed it up too! I learned my lesson.

The speech therapist comes once a week for an hour. The speechy and Faith have become good friends, Faith loves hanging out with her. They play loads of games. Learning is fun Faith has discovered. Walks in the garden, tumbling the compost, playing ball in the standing frame and many other activities.

A few days a go while on our way back from the park, I heard this sweet lalaa arrr coming from the back seat. It was Faith. She was singing. The singing continued for a few minutes with her saying 'hooray' at the end. It was beautiful hearing her singing. What a sweet little girl she is.

Wednesday, 12 November 2014

You make a difference

Your child's progress might not be that easy to see on a day-to-day basis, but when you reflect from time to time on how far he or she has come, give yourself some credit: Would that progress have happened if you hadn't been planning, praying, pushing for it? 

Everything you do for your child -- every appointment, every therapy, every intervention, but also every smile, every hug, every conversation -- makes a difference. 

But you're also making a difference in the world. 

Every time you give information about your child's disability to an educator, you make a difference for the next child. 

Every time you give advice in a support group or online forum, you make a difference for that parent and family. 

You are a force for good.

I found this encouraging and uplifting words on http://specialchildren.about.com/od/needinspiration/ig/Notes-of-Encouragement/You-Make-a-Difference.htm

Monday, 10 November 2014

Answering a friends question


She asked 'what is your new normality?'
I replied 'It is many things'.
Someone asked me the other day how I was coping or managing having a child with special needs and a new baby. I said we were finding our own "new normality" and she asked what is my "new normality"?

It is many things. 

It is experiencing life through different eyes. I am seeing a lot of things for the first time even though this is baby two. I feel as I have been given a gift that I wished for but thought I'd never have. Sometimes I feel this gift might disappear or I wake up and it is a dream. I feel so blessed to have baby 2. 

Before baby 2, I was living and breathing a life with a child with special needs. Of course, we had fun in different ways and we would find joy in that. It was like it defined me - fundraising, appointments, tube feeding, sickness and therapy sessions but it doesn't.  I was letting it define me. I should not have. I'm still who I was before I had kids. Now, I hope, to have grown, changed and found strengths inside me I did not know existed. Now, I am in places I would not have been and made friends I would not have made. I still do all those things but now I have a five month old baby boy who I held not long after he was born and took home with 3 days after he was born. Two worlds have blended together and I could not be happier.  By having a non complicated pregnancy I saw how it should be or perhaps how I wanted it to be, I experienced something new though full of apprehension on the safe arrival of my precious boy. My husband and I are enjoying both children and their steps forward in life. 
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