Monday, 9 September 2013

We are parents with special powers

"No one is in control of your happiness but you; therefore, you have the power to change anything about yourself or your life that you want to change."
Barbara de Angelis

As A parent of a special need child, I realize every day that we have the power in our hands to make or break there lives. Everything we do, and say is impacted on there progress and enrichment in life. Every breath we take, moment we waste, we miss out on getting them that little further.

Power is a dangerous thing we need to make sure we use it wisely and for the right reasons for ourselves as well for our kids. For honorable reasons , not selfish, not to make our stress less or time easier.

P  - Protect and persevere always
O - On every occasion spend moments of value
W - Will power to go on
E  - Encouragement at all times
R  - Right choices for your child

Power - The ability to do something or act in a particular way, esp. as a faculty or quality

We define there quality of life, how they will see the world, friends, learning, obstacles, challenges, love. We have the power to show them that things are possible regardless the obstacles in the way. That the reward is greater cause of the difficulty in obtaining there goals. That life is still beautiful . We create our own world of happiness, and belief in the impossible

I know many see me as the Mom with a child with many disabilities. But i see my girl who will give me a hug not because she may need it then but because she sees i may need it. I see my girl laughing to to the music and the joy of dancing and just letting go and having fun. i see a girl that is grateful for parents that love her and think she is the best daughter in the world. I see a child that has shown me how moments count , cause time flies and how every achievement is a great step in the right direction to her future.

We both have taught each other about life, love and special moments and the power life brings and can take away. The power of never giving up when it seems impossible and the power of a hug when the bad dreams come from the anxiety. The power of unconditional love for your child to keep them going when things get a bit too much. The power of accepting them just the way they are, because they are perfect in your eyes.


We are parents with Special powers . 



Friday, 6 September 2013

The Silent Disabilities


This is my beautiful daughter Faith

I know for the last 2 and 1/2 months have been talking about her. All the trials we have overcome from her been born premature, the adhd, the anxiety, the learning disability, spatial problems, low muscle tone.

Tell me what do you see.? I see a beautiful, extroverted, strong willed, lovable, sensitive, passionate child that has been on deaths door and has overcome obstacles that many kids have never endured, feeling kids have never felt and fears that children cant imagine. 

The silent disabilities that no one can see, because all the disabilities are mental, psychological and on the outside she looks like any 11 year old of her age and because of that people cant understand parents that are over protective, worry more, have routine and are stressed about every little thing. Because they don't deal with the days that she is so all over the place you don't know what to do to keep her busy, or that she gets anxious and upset cause the cat is outside and something is going happen to him and we have to calm her down, or when she has tests and studying is longer and more draining cause she cant understand it and grasp it as easy as every one else and every ounce of energy you have you give over as a parent to help her remember, focus, concentrate, be calm, not stressed and still wake up in the morning and go to work and work a full day and smile and go on .

Have you heard people say the word FINE. OMG how i despise the word . All will be FINE, she strong she be Fine. Have you had that.! I literally want to throw something at someone, seriously!.  Until you have dealt with a child with ADHD or has GENERAL ANXIETY DISORDER or goes to a learning disability school and struggles in every subject , or cant skip, , balance or ride a bike or climb or do simple cart wheels because of her LOW MUSCLE TONE. Please do not come and tell me things will be FINE.

Having a child with a silent disability, a disability that cannot be physically seen is very frustrating. People cant relate to something they cant see until i actually have to explain a scenario for them to understand the depth of it.

We do have a lot to be thankful for, please don't misunderstand me, but sometimes i feel like i am on this island all alone and everyone is on some other island partying it up and frankly been FINE , because you the only one that grasps it all. .I stay positive because i have to, i motivate because i must as parent of a special needs child it is what i must do to keep her going and help her to get through life and love and obstacles and all the challenges and help her cope with this all as an adult one day.

My beautiful miracle baby i would not change for anything, she to has taught me about life and what truly matters and to see the world in a different way. All i ask is please don't use the word FINE. nothing IS fine, and nothing is okI it will forever be apart of her and it will never go away, so be careful how you speak to parents with special need kids. Choose your words carefully and if must rather just give a hug cause sometimes we not asking for advice, we just sometimes need some one to listen.





Monday, 2 September 2013

The silence

Im in bed not a sound. Faith is sleeping husband working late tonight, but in this silence I feel I csn breath let go and just be. Our lives are so busy the whole day some of us work somr of us dont but never stopping for one moment always thinking, planning, worried about our kids. In this silence we get to re group and maybe just maybe for 5 min our brains can stop thinking and planning and researching .        
Take a breath for yourself.  Find your quiet moment and just close your eyes and try relax. I know its alot to ask, but it is in those quiet silences we find clarity and peace and strength to carry on
It is in those times when our minds are frantic and cant rest and we begin to just find that we might be looking for , solutions or find acceptance for things our hearts are finding difficult to deal with.  If tears fall so be it just breaathe snd let go and find time for silence. It can renew you in ways you cant imagine.  Remember your child with all these special needs , they needs a parent that is able to find that time for silence, because one day you need to show your child how important that time is to renew there mind body and soul for them to carry on.

Believe that you are the most important person in your childs life. You need to, you deserve to find time for silence so you can go on.

Saturday, 31 August 2013

Medication issue Pros and Cons


The morning comes we all wake up, get breakfast ready and always remember faith medication and stand by and watch as she takes it. The same thing every morning. I still get upset at the thought that my child at 11 is on medication that for her to function properly concentrate and not become to anxious a tablet has to help her. Then on the other hand when i see the difference in her and what she can achieve and how she behaves when she is not on it i am thankful. I think there are pro's and cons to everything in life and so too with our kids and there medication. Faith is a handful if she doesn't have it. She so busy all the time, loud and gets irritated and upset very quickly for small things. It is tiring for us and we try and not give her on the weekend even though we know she will be an handful, but we want to give her a break just to be who she is without anything changing her. She not a bad child or destructive just very on the go and i feel if i had 1% of her energy i would be able to get through so much more .

The daily routine for her medication i realize is so important and although we sigh every time she has to take it we realize how it is for her well being and functioning as a person. The day the psychologist told me Faith had to go on anti anxiety medication i actually cried at home . This is not normal it is not the way a child is suppose to get through life, but i slowly had to get use to the fact that nothing is normal or should i say the world's way of normal when it comes to Faith. She doesn't like tablets so i literally have to stand there and watch her swallow it cause i have found a few tucked in the couch. I cant blame her she is wondering the same as we are why oh why must i take this.? 

The Cons

1. She doesn't sleep well - Solution bought a calm CD we put on when she goes to bed
2. lack of appetite - Put nice but healthy and a few not so healthy treats in to want her to eat.

The Pros

1. Performs better at school 
2. Less anxious
3. Not so fidgety
4. Concentrates better
5. Able to function day to day tasks

You see the difference ! there are always pro's and con's in everything in life. The issue is does the pro's out weigh the con's and if so then there is always a way to make the con's not so bad, like us buying a calm CD that makes her relax and fall asleep better and to make sure she eats give her food that she will want to eat. Not to mention good exercise and change in diet. These all go hand in hand otherwise the medication can not work as effectively when you giving chocolate or coke to a child with adhd or coffee to a child with anxiety disorder, Certain foods aggravate the situation.

As i have said before Research to your child's special needs are so vital otherwise your house will be in constant chaos and you will feel powerless and you as a parent need to be in control of the situation and be the one to guide them. I have realized with Faith she gets so use to us sorting things out she gets lazy instead of sorting the problem out.

Please understand one day you will not be there . you need to give them the routine, eating habits guidance and ways to solve problems so they can be functioning , independent young adults in society that are also contributing in society even though they take medication. Anything can be managed as long as it can be managed well and we are the stepping stone for them to know how to achieve these life changes that they will most likely have to use for the rest of there lives..




Tuesday, 27 August 2013

Welcome to Holland

Hi All

I want you read this first. For a change i'm showing a picture before i write, but after reading i think you get why. Please read first then read below the picture.




Wow is this not the most beautiful words and explanation been a parent of a special need parent. It is all so true that there comes a time that we need to let go off what we thought would happen in an ideal world and realize what is happening now in our lives. For as much as there is so much we deal with we must not forget to enjoy all the beautiful moments and what been a special need parent shows us and we would never experienced it if our child did not have special needs. it is different, it is new , it is a whole new experience and i know i have learned and experienced so much in the last 11 years so far with Faith i would never of experienced and although there has been rough times, challenges and hurdles to overcome i have seen beauty and compassion and kindness and pure joy and happiness and appreciation for life and moments and memories that we all too often take for granted. This picture above i hope will encourage you to embrace been a parent that has a child with special needs and focus on that and not of what could of been otherwise you are missing out on the journey and the wonder and the great gift it can offer you.

"The Most beautiful things in life can not be seen or touched, but can only be felt with the heart."


Another inspirational video by Orla kelly please view and like http://youtu.be/bKzkGTmx_UA

I end with this ':Children with special needs hold the key to the pure joy of what life is all about."



Saturday, 24 August 2013

Lonely


Hi All

Been a long week and debated for a while what my next blog was going be about. In my mind I keep thinking about friends and family and understanding and sometimes feel so alone on this journey my husband and i are going through with Faith. I know, i know there family and friends support and we genuinely appreciate it all.  Yes we hear all will be fine, she strong ,but i feel myself withdrawing more and more because I'm so tired of trying explain the magnitude of Faith future that lies in our hands and the pressure to make sure she is able to get there. We take one day at a time , that's all we can do. I'm passed the stage of explaining Faith situation now cause i have realised no one fully understands the strength and the determination and the will you have to have as a parent of a special needs child to keep going each day not sure what else will prop up. 

So Reg and i decided our main focus is Faith and you either with us or you gone, i cant be worried about what other people think anymore or what they say or try and encourage, cause frankly i don't have time, I'm too worried researching ways to help her when she has to leave school and we have to help her continue to study and get an education and she has non verbal handicap and is better verbally and trying figure out how to change things, so she can get an education, get a job, be independent one day. As parents you don't think of this when your child is 11, but for us it is a reality we have to plan way ahead, find out, get info to make sure all this will works out.

Sometimes it can be very lonely, not really having someone understand the enormous emotional, physical and mental drain it takes from you besides working and the normal stresses life brings. I have a friend in Australia her daughter is also special needs and how i wish she was in Cape Town so we can support each other more. It's like 2 lonely souls on the opposite side of the worlds trying to support via every social network cause they know the emotions involved.

You know that saying.' you don't know how strong you are until strong is all you can be' It actually becomes easier not to talk about Faith, not to mention the every day struggles and just rather carry on by yourself cause if only your only stress was my child got a D for a test i would be jumping up and down.

These Blogs actually give me peace and healing and it is the one time i have to myself to shout out and scream my frustration and pain without actually shouting out physically.

I know God has a plan, i know we must believe and we do. I hold on to all the fun and laughter we have and the special moments cause i know those times are the ones that will make our family bond stronger and will keep us going through the days of darkness the ones past and the ones still to come. That's why although been a parent of a special need child can be a lonely journey , i encourage you to reach out to whoever you can and that's why my Blog has become so important to me, the lovely messages , the like posts and the people following me keep me going each day. So thank you and keep reading Faith journey and if i have helped to inspire or help just one child or parent then it has been worth it.

 Please see this You tube video on been a special need parent it is short , but beautiful  http://youtu.be/T7TC7xBjVqE




Tuesday, 20 August 2013

Progress not Perfection


Progress - Forward or onward movement toward a destination.

Perfection - The condition, state, or quality of being free or as free as possible from all flaws or defects.

We as parents of special need kids need to realize that we never aim for perfection but reward for progress for our kids are on a different time line and they will never perfect what they do, due to all the difficulties they have. We need to realize that as long as our child is moving forward, steadily progressing she is accomplishing and making her own life or developmental line and this is enough cause to celebrate. 

We have never ever expected perfection from Faith, all we have ever asked her is to try her best at all she does and if she has done that then we as parents can not ask more. Life is difficult enough without us putting our expectations on them especially seen we are not in there shoes. Progress or onward movement towards a destination that is all they need to do no matter how long it takes is besides the point.

All we can do as parents is steer them in the right direction and i think along the way we ourselves would of progressed emotionally and mentally. I have gained so much knowledge that i never would of obtained having a baby born full term. I have become so more tuned in to emotions and feelings and understanding how Faith sees the world, how she progresses each day that i know when she has had a bad day or a good day, when she has gotten over a fear that before she was too petrified to overcome, when she has struggled with something for so long and then suddenly has grasped it. Every little progress she has made from birth and will continue to make we have acknowledged and praised and it may sound stupid, but for Faith it is the world. Parents acceptance that it is OK to not be a perfectionist in academic results or not come first in a race is a big thing. They hold us high in regard and there anxiousness can stem from that when we put too much pressure on them and they not sure if they can live up to our expectations.

So progress and not perfection because Faith has not realized how her life story who you all read all over the world has already blessed and inspired people to stay strong and move forward ,regardless academic difficulties she has already accomplished so much she just cannot see it yet. We are proud every day that she progresses in the right direction with love and support. 

Please remember not all friends will understand what you go through every day your routines, medication, calm cd, homework time that is tiring , and that is OK because this Journey is not theirs it is yours with your child and people that want to be part of it will either be supportive or move on and maybe that is better.

AS LONG AS YOUR CHILD IS PROGRESSING THAT IS ALL THAT COUNTS .

Without continual growth and progress, such words as improvement, achievement, and success have no meaning.

Read more at http://www.brainyquote.com/quotes/quotes/b/benjaminfr387287.html#sFdBmmMmye43vJQx.99 

Friday, 16 August 2013

Encouragement - Famous people that had and have special needs


Do not be dismayed. I know getting your kids to adulthood is a full time job and you never know what the outcome will be when they adults one day. But i want to encourage you to believe and hold on to hope , faith and love and know there is light at the end of the tunnel as long as you never give up on your child.

Today i want to enlighten you on some Famous people that changed the world and they had special needs.

I hope there stories may encourage you to keep on fighting the fight and never give up. Our kids need to know we are always there for them.

Alexander Graham Bell –Bell invented the telephone, but struggled with 
traditional schooling. It’s believed that he had some form of learning 
disability, possibly dyslexia.

Napoleon Bonaparte –Napoleon’s hypersensitivity to touch and his military 
strategic genius are two of the many symptoms that have led some modern 
scholars to suggest that he was a high-functioning autistic.

Richard Branson–A billionaire businessman, Branson credits his business 
intuition and unique perspectives to his early struggles with dyslexia, which 
affects the way he visualizes words.

Erin Brockovich–Brockovich is a former legal clerk whose success in 
building a case against illegal groundwater contamination led to a major 
motion picture starring Julia Roberts. Brockovich is dyslexic.

Terry Bradshaw–The NFL host and former player was diagnosed with 
attention deficit hyperactivity disorder (ADHD).

Cher – Cher is one of the most iconic performers, singers and actresses in the 
world. She has a form of dyslexia that makes it difficult to remember numbers 
or to perform basic mathematics.

Agatha Christie – Christie was the most famous mystery novelist of her time 
and developed a rich writing style that has impacted almost every mystery 
writer of the 20th and 21st centuries. Christie had dysgraphia, a learning 
disability that affected her ability to understand written words.

Tom Cruise – Cruise is among the most recognizable actors in the world. He 
has dyslexia and has spoken publicly about his disability.

Walt Disney –While no hard evidence exists, many scholars believe that 
Disney suffered from dyslexia or a related disorder due to his difficulties in 
school. Disney eventually dropped out of high school and pursued a career as 
an artist.

Albert Einstein– Einstein’s parents once thought that he was mentally 
retarded due to his odd habits and difficulties in school. If he were born today, 
Einstein would probably be diagnosed with Asperger’s Syndrome, a mild form 
of autism.

Thomas Edison– Edison is believed to have had dyslexia and possibly ADHD. 
His mother took him out of school at an early age, and Edison was homeschooled. He developed a voracious appetite for reading and made major scientific breakthroughs with his unusual methodology.

Bill Gates – Some autism experts have suggested that the head of Microsoft 

has Asperger’s, although testing has never been performed

Suzanne Somers – Somers had a learning disability which led to poor 
performance in school and an inability to understand written language. She’s 

most famous for her role on the sitcom, “Three’s Company”.

Robin Williams –Williams is a comedian and actor, famous for his roles in 
“Mrs. Doubtfire,” “Good Will Hunting” and dozens of other films. He has been 
diagnosed with attention deficit hyperactivity disorder (ADHD) which affected 

his education and his ability to memorize scripts.

I encourage you to show this blog to your kids as well, so they may know
 HOPE IS NEVER LOST.






Wednesday, 14 August 2013

I know there is a place for me somewhere out there.


I am a child with Special needs.


I see the world in a different way, don't Judge me
I am sensitive to things, don't hurt my feelings
I do not understand everything straight away, don't laugh at me
I may not be able to play like you do, don't shut me out
I may not excel academically like you do, don't look down on me
I do fear things that seem stupid to you, don't disregard my fears

Let me show you my world:

Let me show you how i see the world
Let me show you been sensitive is a gift of compassion for others needs
Let me show you that not understanding everything straight away doesn't make you smarter
Let me make you understand that not been able to do certain things is no reason to shut me out
Let me show you that a person is not defined by how well they do at school
Let me show you that if you could feel how i feel when i have fears that you would not call me stupid.

I may be different but that is ok, cause i am taking a slower route on my journey in life and on the way i am experiencing all the things people rush without seeing, feeling and touching each day. I learn to appreciate each day and be thankful for little achievements not just big ones. I have been taught what true love, compassion,care and kindness is and in so doing can give that back to someone else that may need it.  Focus and build on what i can do not what i cant do and accept me and for me as i accept you for you. Because i know


I know there is a place for me somewhere out there.


Friday, 9 August 2013

A Look Inside

A Look inside at been a Special Need Mom

This Blog is directed totally at all the special need mom's out there. We go through each day never knowing what it might bring and still with belief in our heart that we have planted those seeds in our child to help them become the special person God created. That through all the rough days. the tiresome therapies and medication given religiously every day, the hugs and reassurance when our kids get anxious or overwhelmed, the nights the nightmares may hit or they feel like there lives are crumbling we carry on without a word, without any one saying  " You are special". So i am here to tell you that you are special you are also a Gift

Your child is wherever they are because of the tiresome effort and strength and courage you put in every day, waking up and never knowing if it will be a good or bad day. All you know is that you have to get up, smile and continue because that is what Special need mom;s do.

Look in side your self and you will see a strength and beauty you never thought you had, endurance when you felt you couldn't go on and Love that God has blessed you with the sensitivity for your special needs child.


“My mother sat me down and said, ...you are beautiful to me but must know that you are beautiful for yourself. You should also be aware that true beauty is in the eye of the beholder, which means that how beautiful you are to other people is always going to be subjective to who is looking at you at that time, and since you will always be looking at yourself first, you should find your own beauty and feel good about who you are.” She went on to tell me that I needed to take the time to identify those things that I found to be beautiful about myself but also celebrate what I thought was weird or unusual because those were the special things that God had given to me that made me different from everybody else. I learned how to appreciate, embrace, and enhance those special things so that they would shine rather than be hidden...We learned to love and identify with what made us uniquely beautiful.”

Saturday, 3 August 2013

Strength

During times of great vulnerability and challenge, we are ironically called upon to access tremendous mental strength, hope and faith often against a tide of our own despair. It’s not easy to do this, but it is vital to our ability to support our forward momentum, lest we become swept up in our own darkness. When you can’t find your faith borrow someone else’s until you remember where you left your own.”
♥ Michele Shusterman, CP Daily Living 

We had a meeting with my daughters school psychologist, they feel due to her learning disabilities been so vast and varied when she turns 15 is best suited to go to a special needs school of skills, she is not academically mined and is struggling too much.  Another blow to us so we have 4 years to find a school best suited for her needs again. I just started crying felt like these challenges we have with her never ends and when i got home and looked at my beautiful daughter it just overwhelmed me how her future lies in our hands. If we want her t o succeed in life to prosper and go forth, we need to be very careful how we tread.  Later after i had taken 2 headache tablets and calmed down and sitting on the internet trying see again what school we will have to research and place her in. I realized how special my child is, how much strength she has given me to go on,. Strength to move forward in these days with big questions over her life and uncertainty around, Strength to not give up on her but always find away because she needs us, depends on us and we need to show her what strength is to get through these days . 

I've realized that she is who she is and she must be who she is and if she doesn't get a matric through the normal channels like every one else does and rather goes to a school where she can feel and touch and experience things on a greater level than most kids would ever get to do, then she is actually privileged  I need to have the strength to move her forward in the direction that will get her to her goals and not in the normal manner. Being different is Good. I need to tell her that no matter where she is, she can still be awesome every day in whatever she does and she will find the strength to finish and get where she suppose to go as long as she is true to herself .

We need to find the strength to let her be the best she can be at the same time protecting her  and allowing her to blossom letting her know that it is perfectly fine and we love her just the way she is.




Friday, 26 July 2013

You are special

You're loved just as you are.
(Ephesians 3:17-19)
You've got everything you need.
Just when you need it.
(Philippians 4:19)
You're going to make it through.
Just when you least expect it.
(Romans 8:28)

And just in case the noise of the busy and the difficult makes it a little hard to hear, listen closely - the Heart of Heaven is cheering you on and others who love you are too. ~ 

Is this not so true. Our children need to know how special they are, not just special needs because of there difficulties, but uniquely. special individuals who are beautiful just the way they are no matter what difficulties they may have. They have everything they need. The world has this way of having blinders on and it must be like this or like that. Nothing is ever just black and white. it can be neon colored or brightly spotted. They will make it through because God does not make junk and just when they least expect it or think they are on there last hope they will succeed because they are stronger more determined individuals who know that life is not easy and they have to work extra hard to get to where they need to go. Like i said before it is not the destination that counts as much as the journey getting there.

They need to listen closely to there hearts, because there are so many people, friends, parents etc who love them and are cheering them on to that finish line. Whose hearts are filled with belief and hope and love for them.

You are special not just because you have difficulties, but because God has given them other gifts and they have no idea how there lives might of touched others without them realizing it.

Make sure your child knows they special and loved just the way they are, that regardless they have all they need and when the time comes they know what will help them make it through when they least expect it, or are just about to give up. Let them know they are loved by many and regardless you are proud of them just the way they are.

Wednesday, 24 July 2013

To Overcome


To Over come: To succeed in a problem or difficulty


Faith will be re doing grade 4, she is not making the grade and they feel she has severe learning problems. I try and breath and take this all in. My husband and I know it is not going be easy she still has many hurdles to overcome at school, in life. I try not let all this get to me but sometimes just when i think i am fine and handle all something else happens and i try not to cry or get all emotional. I sometimes just feel numb like i just don't want to see anyone , speak to anyone cause I feel people just don't grasp the severity of what we are going through and what Faith is trying to deal with, which she hasn't even grasped yet cause she is not mature enough to handle it all.

Reggie and I made a promise to ourselves. She will overcome, she will be an success, she will make something of herself. We will not let these disabilities allow her to fail. We will not give up on her,we will not stop until she has become the best she can be. I have to tell myself this to move myself forward and sometimes it is very tiring to do this, but we go on. I don't even know if Faith will make it to matric.

To overcome - succeed in a problem or difficulty. Please realize there difficulty and their difficulty. I would never change Faith for the world. She is the reason i wake up every morning and she has opened our eyes to so much other things we would never of seen if she had not been born premature. 

Is it too much to ask as a mother that you just want your child to have opportunities that come so easy to other children. Is it too much to ask that you want to see just one thing that she doesn't struggle with, but does with ease to take the enormous pressure she has on her shoulders with everything else off a bit. Is it too much to ask that you want your child to succeed in this world and be able to live an independent life like we wish for all our kids.

I know her learning disabilities will never disappear  her general anxiety disorder she will have to handle as she gets older, her adhd she will have to learn to control , but regardless of all these we want her to OVERCOME, to SUCCEED, to PROSPER. After all she been through and still will have to go through I think she deserves it and should demand it of herself and show the world that it may take me longer but i will Overcome.

 

Monday, 22 July 2013

Anticipation



“Of all the hardships a person had to face, none was more punishing than the simple act of waiting.” 

Faith recently is been checked for her IQ in the the different levels of development and at what age she is working at to determine how to help her best . 

This game of waiting for us parents. You know what i mean every test, every checkup, every development milestone is like you holding your breath waiting for the sword to drop.You know that your child has problems but it is exhausting as every year every development holds different outcomes and you don't know what to expect and your heart just cries out thinking how to handle all of these things that the doctors  speech therapist, occupational therapist,psychologist , teachers tell you.

Every waiting in anticipation hoping someone would say something positive instead of negative. Always what she cant do, what she cant perform, what she unable to achieve and you as a parent have to look at your child in her eyes and say " You can do anything you put your mind to" with a hope at the same time you believe the same . Without her knowing all the things she is struggling with.

Faiths officially 11 years old now. She is more aware of things and just yesterday she asked me why she goes to Vista Nova. The time is coming where i have to explain every little thing she cannot do and hope that for the past 11 years we have built her confidence up enough to not let it affect her. We anguish everyday over her and at the same time know she has come along way. But that waiting that anticipation for every new thing she has to over come, every new test they want to see how far her development has come. It aches in my heart and i so wish i could just wish it all away, but that wont be wise because we have to deal with reality in order to do the best we can for her for now for tomorrow and her future.

Been a parent of a special needs child is like having your heart permanently on  a string , You not sure which way someone is 
going yank it and you always holding your breath waiting for something else to hit. Every year it has been something new for 
us from the time she was born the anticipation from her survival 
to if she would ever make it home, to been home and hoping nothing will go wrong, to wondering if she crawl or 
walk at the right age , eat at the right age,say her first word
 at the right age. Then on to school and finding how she struggles academically with her spacial that she cant balance or skip at the ages that other kids to, to finding out she has General anxiety disorder and adhd and those are challenges on there own.

The anticipation i feel will never end and all we can do is take one day at a time and thank God everyday that she is this ball of energy that shines through the darkness that we find ourselves in, that she smiles and laughs and jokes and plays and loves and feels and take every moment as it comes with a hope for the next drop of the ball to hope it may get a little bit easier for Faith and for us. But we leave all of these in Gods hands for he must have a plan and to keep us strong for every time we have to wait with anticipation for the next hurdle to overcome.



Wednesday, 17 July 2013

Blessings

"If you raise your children to feel that they can accomplish any goal or task they decide upon, you will have succeeded as a parent and you will have given your children the greatest of all blessings."

Brian Tracy

Read more at http://www.brainyquote.com/quotes/quotes/b/briantracy125750.html#dHyAuH80IKD6302P.99 

Today is my niece Tarryn birthday, tomorrow is my beautiful daughter Faith;s 11 birthday. Both have been through lot in life. Sometimes a bit too much than any kids should handle. But as I gave Tarryn her beautiful cake and gifts and saw how she has grown from the broken child she was 7 years ago and Faith who is so excited to have her sleepover party tomorrow with her friends. I truly feel blessed. Because although this trials and needs that have drained us and made us feel tired and we have to find all the energy to go on, just seeing there glow in there face and the light in there eyes i feel we have come along way and we have overcome lot of obstacles and we will still need to over come more. But i think we need to acknowledge the hurdles we have overcome. So to see Tarryn and Faith so happy and content i feel we have grown, we have gotten through lot and we are truly blessed to have kids that still laugh and smile and joke regardless of the difficulties they may or may still need to overcome.

Acknowledge all the things you have overcome with your child it keeps you going forward. it keeps you positive and you as a parent will also feel that although some things are trial and error you have done a great job if your kids are excited and smiling and happy individuals. You have taught them to be that way and that is a great blessing. We need to be excited . It is these moments that get us through the darker times and the good memories that keep us focusing on that the future can still be great,

If you raise your children to feel that they can accomplish any goal or task they decide upon, you will have succeeded as a parent and you will have given your children the greatest of all blessings.


Friday, 12 July 2013

Seize the day

"From your child with special needs: "I know that I am different and I've asked you to look at the world in a whole new way. I believe in you because you believe in me." HOPELights

Time does not stand still, we have but one day to see, experience and embrace the challenges that we have. All we can do is take one minute , one hour , one day at a time. 

No two days are the same. With Faith one day she may be in high spirits the next she may awake because of nightmares, or anxiety. Or school may be a challenge, friends may be a challenge. Life in general. 

Each day is an opportunity to find the positive out of a day that may be full of cobwebs and dust and find the sun shine down on you so you may feel the warmth on your face and smile, because we need to appreciate every moment . It may be a good day or a bad day. Each moment with our kids teaches us and them to appreciate every moment we have with them and we have the choice to capture the moments in a good way although it may drain us with the challenges they face.

One day at a time to show them as well to live life to the fullest, no matter what kind of day you may wake to. That the sun will shine, the stars will glow and that a new day will dawn where we can start all over again and nothing is the end of the world.

We have to teach them that the mistakes from yesterday are gone and each day is a new day to start a fresh and it is up to us to decide if we are going have awesome moments or unhappy moments.

Our lives will be a reflection of theirs. The way we handle life, love, laughter, they will take in. We need to teach them to see that even just seeing a flower blossom after a bad day , is a day to be thankful for. That we always need to find something each and every day to be thankful for, no matter how we feel or they feel. If we teach them to think on a more positive way, there minds will eventually think that way and they will be happier more wholesome individuals.

I always ask faith how her day was and i tell her if you tell me a negative thing about your day, you also have to think of a positive thing that happen today regardless how small.

It is the small things that keep us going through the darkest times. The hug, the sms of kind words, the sweet whisper of i love you.

Don't let little things get you down.
You've got many big reasons to look up
To God and say thanks.
 It's going to be a great day. 

https://plus.google.com/u/0/b/101579497691145741998/101579497691145741998

Tuesday, 9 July 2013

Serenity prayer


God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.

Grant me the serenity to accept the things i cannot change.
Notice it doesn't say don't worry, it asks us to accept and find some kind of inner peace for the things we cant change. To realize that all our kids are special in whatever way and although all there disabilities frustrate and tire us sometimes we as parents need to take on the challenge to realize this is who they are and find  peace about it, embrace it and find the positive out of all the negative that usually surrounds us. Teach our kids to accept the things they cant change either and find inner peace inside them about it.
Courage to change the things i can
There are 2 types of people in the world. Those that complain all the time and those that sort out there problems. Don't come to me and complain if you have done nothing to sort the problem out. Don't get me wrong a person needs to vent granted, but at the same time you need to be a strong, courageous, inspiring parent for our kids. There lives are difficult enough and we need to show them what needs to be done, how to live life, how to be courageous and take on the duty of accepting and changing what they can.
Wisdom to know the difference
This is the hardest one of all, as e learn this through time and trial and error, as there is no hand books to show you the way. With wisdom and time we know the difference. We find acceptance and we change what we can. We need to pass these trades on to our kids. It is the greatest lessons they will learn when life is already so difficult.
If we as parents of special need kids can teach them the serenity prayer, to accept that they are who they are and can't change that. Teach them to learn what is important to change and to know the difference between the too so they know when life pushes and pulls them and they don't know what direction to go. They would of bean taught to know the difference and be wiser, at peace with who they are and embrace there lives with confidence and courage.




Saturday, 6 July 2013

Perserverance


Perseverance - verb meaning to continue in a course of action even in the face of difficulty or with little or no indication of success.

This is what we teach our kids every day, every time the light goes out of there faces cause other kids can do things they cant. When they feel like there hearts are going break because they cant join in for whatever there problem is. Perseverance is what we need to teach them every day, because it will not get better, it may get a bit easier in some departments and then worsen in others as they get older and life changes. 


We were at friends one night and they all were doing cart wheels, i didn't even notice it but Faith had quietly disappeared and had gone to sit in the room. I looked around for her and asked where she was and they didn't know, so i went inside and found her sitting in the room crying and upset. I asked her what was wrong. She said 'Mom i cant do it, I said do what ? The cartwheels Mom i cant do it and they all can. I said i know you can't sweetheart t and it is ok you just persevere with it and you eventually get there even if it is not perfect and if they are your friends, be honest with them and tell them and let them help you. That's what friends are suppose to do. She said Mom it's hard . I said i know it is hard but if you don't try , if you don't persevere you will never know if you can or cant , and even if you don't do it one hundred percent it is ok too. We hugged and she went out and i stood there and she told them feeling a bit low that she couldn't do cart wheels and they were ok with it, they showed her, held her legs and made her feel part of it all, not disconnected. I am thankful for that.

Such a simple, easy,thing to do, yet for Faith her whole world was crumbling because of this one thing. Perseverance i tell her when she has tests, when her anxiety kicks in and she feels nervous, when we have a bike sitting that we not using because she just cant turn the peddles around and ride a bike yet and she turning 11 yrs old.  When she cant even pick up Leo our new kitten cause of her fears. I think how deflated our kids must feel having to always have to try something over and over and over, never just been able to get something right the first time, but then i think to myself that as they grow up and pass certain hurdles, maybe achieve some goals they will be stronger and more confident individuals and appreciate everything in life more because it took them longer to get there. 

It is not the destination that counts so much but the journey getting there, because we would of learned so much along the way. I see it every day with Faith she is a thankful child. She will tell me twenty times thank you for something and as young as she is she has learned to be thankful for so much, so many little stuff even the Kitten Leo we got her that she cant even pick up yet she is thankful for and says we the best Mom and dad in the world.

Perseverance to continue in a course of action even in the face of difficulty or with little or no indication of success.

 I am in awe of my daughter Faith, that although she knows most of the time she may fail she keeps on persevering.


Tuesday, 2 July 2013

Letting Go

Letting Go

For myself

It took me along time to forgive my self and not feel like I was the reason Faith was born premature and for all the problems she has now. I use to cry why this happened  I was a healthy woman did not smoke and drink a lot, she was planned as well. I fought with myself all the time and felt like i owed her something. Maybe time or had to now give more than my all cause i felt so bad. Then after many years of backward and forward fighting with myself and hoping my husband and everyone else might not think also it was my body that was not working. Not doing what it is suppose to do. I realized like a light bulb that i need to stop beating myself up. Crap happens, to put it bluntly. I have always before Faith was born and still now 11 years later done whatever i can to be there for her in any way possible. It doesn't matter she has these problems, she is healthy , loved and blessed and she is where she is now through all the hard work, effort and sacrifice my self and husband have put in. That Faith is my Gift from God. Maybe to make me a stronger person, or a more dedicated person. I don't know. God has his reasons . 

So it is OK to cry about it, and get angry and to let it all out. That's how we heal. We don't get to, do we, cause we go in to survival mode and just do what  we have to do and people forget about how this traumatic thing has affected us, because everyone concentrated on the baby and forget that it affects us as well. So Let it Go and Let it Be and let Life move on .

For my child

We hold on a little more than other parents do, don't we. We worry more, we check more, we sort out things more, we help more. It's all because we know they have difficulties and to try and find the balance to let them go and be a little more independent is difficult. It is easy for others to talk. When you don't have to worry how your child feels, acts or re acts to every situation, how she cant do, maybe can do some activities. How every thing in her life you are a part of. How do you just let go. When, what age do you do that. You know what!. 

WHENEVER YOU FEEL YOU READY.

Faith and I are very close , have been from birth. My bond with her , all we do her knowing I'm there for her each and every step of the way will make her a more secure and confident person. I know when she feels she can ,she herself will say " Mom it is OK i want to do this" and there it will start slowly and then we slowly know it all will be OK. Our kids have had a rougher start to life so the same rules do not apply. The baby books did not help me at all when Faith was 640g. It was trial and error. So let go of your child when you and her feel the right time is, not when friends or family say so. You both have been through a traumatic experience and no one will be able to fully understand the emotional drama that arises from this. I know when Faith is a teenager and then an adult . Our bond is going be even better, because i was interested in everything she did and i was there to talk to and that will never change no matter how old she gets.

Quote for today

“A star falls from the sky and into your hands. Then it seeps through your veins and swims inside your blood and becomes every part of you. And then you have to put it back into the sky. And it's the most painful thing you'll ever have to do and that you've ever done. But what's yours is yours. Whether it’s up in the sky or here in your hands. And one day, it'll fall from the sky and hit you in the head real hard and that time, you won't have to put it back in the sky again.” 
― C. JoyBell C.

Friday, 28 June 2013

For the Love of it

For the Love of it


Live, love , Laugh. I truly believe all our children have a gift. I am to blame too we focus so much on what they can't do, because we have had the negative words drummed in to us over and over by teachers and doctors and care givers since they were born. We loose focus and we really should stand still and look and find what our child's Gift is. We are not all suppose to be brilliant in maths or history or any school based subjects where the school structure is so rigid even mainstream kids have difficulty getting through.

Our kids know how to find pure joy in something because for them it doesn't happen often with all the struggles they deal with. So when I see Faiths dancing and singing and forgetting all her anxiety, forgetting how she not making the grade, or the bad dreams at night she has. I too then forget all those things and smile and see through all the negativity that can drain a parent so much, it is hard to find the positive side of anything. It took my friend Carmen to make me realize this and I thank her from the bottom of my heart.

 Find your child's Gift and focus on that. We allow too many people put our kids down cause it is always what they cant do, but there is so much they can do, it is just not the norm of the world. So what is really normal hey, normal is boring why not be fabulously different. We all need it sometimes.

Quote for today: Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world.

Read more at http://www.brainyquote.com/quotes/quotes/h/harriettub310306.html#QFIspcxrPDTQtU1T.99 




Agatha Christie Quote








Thursday, 27 June 2013

Courageous

Courageous



“Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.”


It is exhausting is it not! As parents it seems our brains are always on the go. Even when I go to bed at night I am thinking what the next day will hold and how I must plan the day, her routine. The way we say bye every day at aftercare/ If we do it wrong or the routine gets disrupted, that's it ,she is anxious or upset the whole day. The way we put her to bed, lamp light on, calm CD on, kiss good night and hope she has a restful night. The energy levels still high after a long day and you wish you could have 5% extra just to keep up with them running around as if they just woke up.
You Sit down and feel all overwhelmed a bit and need just a chance to breathe and have a time out to try and get your mind right again. Then your child, your child that has this ADHD, this child that has GAD, this child that struggles and needs routine and exhausts you cause you have to be positive all the time, and you feel sometimes it can get too much. Your child comes to you and says 

" Mom, Dad just wanted to say i love you, you guys are the best."

 And you get the biggest squeeze ever like they breaking your bones , and they smile and you smile and some how you do breathe once more and you find the courage like a quiet voice inside you to do this all again tomorrow.



The Gift - Our Kids teach us to be courageous for them.




Wednesday, 26 June 2013

Tears of Joy and Sadness

Tears of Joy and Sadness

As Faith and I one night lay cuddled in the bed just chatting before it was her bedtime, she turned to me and said "Mom why do i have anxiety?, Why do i struggle so ?." My eyes started to fill with tears and I got this lump in my throat cause I felt like my heart was going break. I had no idea what to say to my 11 year old, what words could ever satisfy her.There are none. I held her in my arms and just said." Maybe I can explain better when you older, for now just know that you are a very special and no matter what you go through your Dad and I will always be here to help you through anything, so don't be afraid ". I cried myself to sleep that night cause my heart felt sore and I wish I could of had some solid reason to give her to make her feel more at peace, but I didn't. No psychological or  scientific jargon would of helped and no explanation would she understand. 

I woke up trying gain my strength and start the next morning on a positive note, especially with her anxiety we needed to be as positive as possible for her. She knows when I stress or am upset or feel sad. I got her sorted ready for the day and we have a saying a, actually two. " I will have Faith in Faith." and " Today will be a pink day". I remind her every day to say that to herself to overcome when there are times we are not around, at school feeling overwhelmed cause she cant grasp the work or on the play ground when friends are not been as nice as they should be.

My tears are sad and joyful and I pain everyday wondering what she thinks every day, how she feels every day. Will this get better or worse?. Teenage hood is around the corner and we now have to hold thumbs that depression will not come, as with anxiety disorders depression follows later.

Tenderness
Encourage
Accept
Renew
Support

My Tears need to be Tender, encourage her, accept her for who she is, renew her each day and support her always.

The Gift -  Faith has shown me how to be compassionate, how to be stronger than i ever thought i could be and how to be a better mother to her each and every day





Tuesday, 25 June 2013

Meet Faith

Meet Faith Page :) 





This is just a small glimpse of Faith although she seems quiet fine on the outside the struggle is within with general anxiety disorder, adhd, low muscle tone, fine and gross motor and spatial problems.  She loves dancing and singing and Disney channel 303 and Monster High lol. She is our gift from God .