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. 

Saturday, 8 November 2014

We make our own normality

We make our own normality
At first I did not really want to see anyone. I just wanted to be left alone. I needed to get my head around what we were facing. Friends and family prayed and some visited but for a while we just stayed away. It was easier this way for now - anyway. Minutes, turned into hours, hours into days and slowly my joy in my pregnancy and life started to return. The maternity clothes got pulled out from underneath the bed and so did the mother-to-be magazines. I started to plan the baby's bedroom. I guess the biggest aspect I tried not to think about was the four weeks before my due date when I would have to leave my home and relocate to Brisbane. For now, I just pushed it to the back of mind. It was still months away.

My journey is not one you hear much about as people are generally uncomfortable talking about something they do not know anything about. Particularly, when it comes to a child born with what the doctors call a ‘birth defect.’ Even the word scares people and the looks of pity. Pity is not what I want. It is to be treated normally like you would anyone else. When I pictured my life I pictured myself married with children, a house, friends and even a dog. A typical dream of a young girl. A happy ever after story with no major life challenges. The day we decided to have a baby my life changed. Oh, the excitement (thinking what have I done) and keeping the secret of being pregnant from everyone and only a secret between me and my love. What an exciting blessing!

I did not research Spina Bifida and Arnold Chiari ii Malformation as I knew what I needed to know for now. The way our families and friends coped with the news was very different. Most of them just wanted to be there to support us in any way possible. Others wanted to know what the outlook for our soon to be little one was. But how are we to know? Every situation is different and the body responds differently. I think what I struggled with most was those sort of questions, at first. To me, why look to what maybe, but look at now and the positives and deal with the future when it comes. My husband handled the hard questions, he shielded me from it and it was what I needed then.

After hiding away for a time, I returned to work. I began to do most of the things I used to and in my mind it was going to be ok. Time passed and I got bigger and bigger. I loved feeling the baby move and kick. It gave me such delight. A couple of my friends were pregnant so it was a joy sharing our pregnancy journey together even though mine was slightly different. I still longed to ‘fit in’ and not be left behind. My mum organised a baby shower. We had it at our house and this certainly brought so much fun to the baby planning and future. So many people came we had a full house. It was so much fun, we had games, food and everyone was so generous. The little bub received so many practical, fun and beautiful presents. We celebrated and it was such a joy. My husband and I painted the nursery and purchased furniture, all the little clothes washed, pressed and folded awaiting the arrival of bubs.

The day I dreaded was the day I would leave my family and friends behind including my husband to relocate to Brisbane to await the arrival of our first baby. This was so hard, so many tears, I felt this is not the way it is meant to be. My heart hurts. I wanted to be nesting at home. It was four weeks before my due date and suddenly my new found normality was gone again, a long time to return. My normality became ‘ever-changing’ and I had just have to find peace with that.

Now, three and half years on I reflect about how I have changed, how I have become a confident and assertive person more than before. I have come to understand there is not always one answer but question everything and there are many alternatives. Never accept ‘can’t.’ But most of all, I have found within each of us we decide what is normal and what is not, we can create and change. We don’t have to fit to the world’s standards. We can make our own. I have a deep empathy for others. I see the world with different eyes. My world is still a beautiful place I just had to alter my dreams and keep altering them.  

Like most mums, I want more for my child. The hurt I feel is as our little one is getting older she is not included with her little friends in their active activities. Of course, we have play dates and those type of things. But some just get concerned there little one will pull our little one’s tubes or be too rough. It would be annoying if the tubes got pulled out but it is not the end of the world. We would just put them back in again. I feel like I missed out on the ‘mum's club.’ The sharing of ideas, raising our children together, going to the park, sharing stories on how to make it through and the subject of more babies. All our stories are medical stuff and our stories of day-to-day struggles are different. We have experience in medical areas most of them will never see. Though, of course I share our journey with our friends and some try so very hard to understand. It is just hard sometimes being a little left out though not intentionally.

I have discovered children with special needs are not so uncommon and each of us has a different normality. I love my little one so much. I love playing with her and showing her new activities. I love when she understands something new for the first time, laughs late at night with her teddy - treasured moments. Our baby is growing, gaining weight and someday soon I am sure she will be able to sit up, crawl and play more. It just takes a little longer for her. Family trips are becoming more regular, I am venturing out, being more social. It requires a little more patience. It is an around about way but we have found our own version of normality, our ever changing normality. 






Friday, 7 November 2014

The joy of being able to play

Being able to play on your own and being able to pick up objects or toys, being able to grasp is something I have taken for granted. To pick up a spoon or block or even throwing a ball. I would think these are tasks most of us would take for granted. It becomes automatic to hold items and hold my little ones hand but Faith has only learned to grasp objects in the last 12 months.

 I clearly remember the first real grasp she made. It started one night while watching TV. Faith picked up some coloured balls and dropped them again. She moved them around her seat. We were captivated. Months of intense physiotherapy and occupational therapy were paying off. Faith's sensory awareness was changing. She was changing. The next morning we were all eager to see if Faith could repeat this new learned skill. 

My husband and Faith were playing with the ball tower and hubby offered the red or blue ball to her. Out came her hand, fingers outstretched and like magic she took the small ball and dropped it half way up the ball tower and roll roll down down to the bottom. Faith was offered the ball and she accepted it continuing to pick up the ball and drop half way up the ball tower. Faith could play this game on her own or with others, another skill being developed. What a joy!

12months on and Faith has transferred this skill of grasping to so many different objects. Playing with balls, a favourite past time of hers, trying to give herself a drink, moving toy cars around, building and knocking down towers and learning to turn pages on a book. She will even touch sand and different textured objects. What a huge step from a little girl who clenched her fists most of the time not wanting to touch or hold anything. Faith has worked hard with her therapists to grow in this area. Now to help the right hand learn to grasp to help the left. 

Small steps in the right direction. 

Wednesday, 5 November 2014

Time to try freedom!

Life is crazy busy. The reason I started this blog was an outlet for my mind to process my life with a darling daughter with special needs. For many reasons I have not been here but in the last year has been crazy with a huge amount of activity

 - Faith turned four.
- been out of hospital for over a year.
- gained weight. 
- become a big sister.
- taste food again for the first time in over year. It's a beginning.
- be regularly well, though those pesky UTI's are still around but better managed.
- start a support campaign to raise funds for Faith's therapy. 
- Start weekly speech therapy and continue with regular physiotherapy

The biggest moment was when Faith tried a motorised wheel chair for the first time. For a long time I lived in denial of Faith needing a wheel chair, of course, I knew she could not walk but I always hoped. Hoped for more. I still do. BUT, you know, when I saw her in this wheel chair, my heart melted. All the apprehension disappeared. For the first time in her life my little girl was independent - it was her "first steps". No longer was she a baby but a little girl longing to explore the world and see it for herself. Explore and not rely on others for everything. First, she went round and round hooray. The look of glee on her face. It sparkled like the stars. Happiness. The therapist took her out into the hallway and she took off - zooming down towards her daddy. Something beautiful seeing our little girl discovering freedom. Freedom brought on a whole new meaning. Faith as yet in unable to sit up or crawl so instead of being stuck in one pace given activities she could make choices of where she went and what she did. It brought her freedom from reliance on others.

Now we wait for another trial of the motorised wheel chair for her to again try her freedom...
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