Managing childhood Apaxia in Twins: Healing Sophia and Olivia

This week I met a courageous mum Nilissa and her beautiful 11-year-old twin daughters: Sophia Grave and Olivia Rose. Both girls have Apraxia, Central Auditory Processing Disorder and Sensory Processing disorder. As this is a forum and blog for all parents of multiples across for all around the world, I wanted to share Nilissa’s story with you as a parent with children with special needs. I you would love to show some support please like her Facebook Page: The Rainbow Road to Recovery

 

My name is Nilissa, and I am the very proud mum of beautiful, beyond beautiful, strong, courageous, smart and very determined eleven year old twin girls. Sophia Grace and Olivia Rose. When I was growing up the one thing that I knew was that I always wanted to become a mum and after several rounds of IVF I got the beyond amazing new that I was pregnant, and with twins. My pregnancy was up and down with me being put on complete rest and daily monitoring from 20 weeks. I managed to carry my girls to 29 weeks and was rushed in for an emergency C section. My beautiful girls began their journey into this world rough, as they had cords tangled and their bodies were covered in bruises. They were absolutely tiny, they were only 29 weeks, they were not meant to be here yet. Their little bodies weren’t developed. Their little immune systems not ready for the onslaught of medical issues that was about t to start. My girls came into this world sick. They had respiratory issues, exzcma, gut and bowl issues. Their immune system was just not coping and they were only starting this journey of life.

While in Special care alone they had ear infections, eye infections, chronic reflux and shocking fecal compaction along with rounds of antibiotics.

Managing childhood Apaxia in Twins

The first year of my girls lies was beyond intensive and absolutely exhausting. From physiotherapy to one specialist after the other trying to find answers as to why my girls were chronically ill with a range of severe issues that was apparently normal for premature twins. My girls were sick and as each day passed they only got worse. But apparently that was ok, normal, to be expected.

I will never forget this day. I remember it as clear and as plain as it just happened. It was in August 2007 and after being to every specialist in Brisbane and one in Melbourne I got into a doctor who was head of one of the children’s hospitals here in Brisbane. After looking through the mountain of medical tests and reports I had with me he asked me a few questions about sleep, how my girls settled. Nothing much really. He spent a short period of time with my girls each alone. When he finished this he came back into the room with me. He said I’m sorry. Your girls have autism. Because of the range of medical issues they have and that they were loosing skills he said it was severe and regression autism and that there was nothing. Nothing. That was it. No hope, nothing.

Managing childhood Apaxia in TwinsI remember getting home and by this point the absolute pain I felt was so horrible and intense that I could hardly breath. I cried until I was numb, until there was nothing left to cry or feel. Then I got really angry. How could a doctor give no hope. There were my beautiful girls. Strong, courageous, perfect little girls who were sick. Apparently that’s autism.

I remember then talking out-loud to god. Telling god that I wanted to make a deal with him. That I needed him to help me. Guide me. Show me what I needed to do to get my girls well. I promised him that if he would help me get my girls well, show me the way, that I would do everything and anything to help others.

The internet then became my obsession but in my searches I found some absolutely amazing organisations and doctors who gave hope, and spoke of wellness and medical therapies and recoveries. I thanked god. I had two roads given to me. One of absolutely no hope, nothing and one of hope and wellness and a life for my beautiful girls. I took that road of hope, and I have never and will never look back, and nor have my beautiful girls.

I have had my girls under some truly amazing doctors over the years and we have cleaned up severe viruses and bacterial pathogens. We have detoxed. We have done stem cell therapy to help address the range of range of severe sensory processing and neuro feed back issues. We have detoxed. We have cleaned up their diet, limited environmental toxins. We helped support areas of their bodies that were not functioning properly with specific biomedical therapies. We have worked on their gut as both my girls have a range of severe gut issues and still have dangerous bacterial pathogens causing a range of serious issues. And, we have done intensive early intervention therapies and as we did all of this my beautiful girls started to get well. Everything started to come together.

Its like a jigsaw puzzle. You have to very carefully put all of the pieces back together and when you do, you have a complete and well little person.

Then in June 2010 absolutely everything crumbled. It all came to a screaming holt. The massive financial costs of everything by two had crippled us. We were so close but still so far away for them.

I got so angry again. Why was this happening. My girls were full steam ahead on the road to wellness, to recovery, to a life.

The last five years I have been doing everything I possibly can for the both regarding biomedical therapies and also specialised therapy needs. But this has only been a bandaid over a gushing wound so to speak. I home school both my girls and I try to co- ordinate as much specialised therapies that I can financially afford, which is not much, nothing really.

Sadly in Australia we have no specialised school that offer intensive, individual programs specific to your child’s needs. And the therapists are few and far between that really specialise in autism and all of the other related disorders that come with this vile monster. And then trying to get therapists to work in with each other is virtually impossible. We have a massive black hole, and it does sadly come down to how much money you have as to the life your child will have.

I made a promise to my girls. Way before they were born. I promised them that no matter what I would love them unconditionally, that I would protect them and that I would do anything and everything to make sure that they had a happy life. And until I know that they have this I won’t stop.

Everyone on this planet deserves wellness. Everyone deserves the right education. Friends, employment, happiness. This is all I want for my girls. This is my promise to them. This is the road I chose what seems a lifetime ago now.

We are so close to finishing their puzzle. We have this amazing opportunity for the girls to attend a very unique and specialised school in Florida that will provide my girls with every single one of their individual therapy needs met. This is absolutely beyond a dream come true. But I desperately need help in making this happen for them.

My girls still have medical issues and with the autism diagnosis also came apraxia, sensory processing disorder, central auditory processing disorder, co-ordination both in fine and gross motor control and neuro developmental issues. Sophia still has a range of severe and serious viral and bacterial pathogens that potentially will cause colon cancer if left untreated. We have her managed only at the moment. They still both need a range of specific biomedical medications to help support their immune and methylation function. A range of specific pro and probiotics to keep their gut on the path of healing. But the biggest thing and what Australis cannot provide is their specialised and intensive therapy schooling needs. This is where Florida and this amazing school come in. This school runs a range of scientifically proven therapies which they combined into a specific intensive individual program which will address each of girls needs. This is where our path is taking up for the final chapter of this incredible journey for my beautiful girls.

 My beautiful girls need a very intensive and specialized Neuro therapy program which combines a number of scientifically proven specialized therapies to address their individual specific needs (which can only be done in the U.S.A).

Your kindness, support and donations are needed.
We have a Facebook Page set-up which will show all progress and also has a lot more information and links on this about everything for your perusal. The Rainbow Road to Recovery.

Thank you for your time and I thank you for your support and helping me make this happen for my gorgeous girls.

Me coming out of my protective bubble to ask for the kindness and help of others has been really hard, and I thank you all from the bottom of my heart for your kindness, and all of your support.

Managing childhood Apaxia in Twins

If you would like to donate to the girls we also have a GoFund Me page set up. All donations are appreciated!

Thank you Link Below.

Rainbow Road to Recovery Go Fund ME Page

What is Apraxia?

Apraxia is a poorly understood neurological condition. People who have it find it difficult or impossible to make certain motor movements, in both fine and gross motor skills even though their muscles are normal.
With apraxia of speech a person finds it difficult or impossible to move his or her mouth and tongue in fluency motion to form speech and speak. This happens, even though the person has the desire to speak and the mouth and tongue muscles are physically able to form words. With Apraxia there are no oral motor issues.

Developmental apraxia of speech is also known as childhood apraxia of speech. It affects a child’s ability to form sounds and words. Children with speech apraxia will have far greater abilities to understand speech than to express themselves with spoken words.

Children who are given the right intensive range of Neuro therapy programs with developmental apraxia will experience significant improvement, if not complete recovery, with this correct treatment.
Language development is the most important developmental accomplishment of early childhood and is the absolute foundation for literacy, educational achievements and post school opportunity (Law, Rush, Schoon & Parsons 2009). Without language there can be NO learning.

A secondary disorder that comes hand in hand with Apraxia is Auditory processing disorder (APD), also known as central auditory processing

Apraxia is a poorly understood neurological condition. People who have it find it difficult or impossible to make certain motor movements, in both fine and gross motor skills even though their muscles are normal.
With apraxia of speech a person finds it difficult or impossible to move his or her mouth and tongue in fluency motion to form speech and speak. This happens, even though the person has the desire to speak and the mouth and tongue muscles are physically able to form words. With Apraxia there are no oral motor issues.

Developmental apraxia of speech is also known as childhood apraxia of speech. It affects a child’s ability to form sounds and words. Children with speech apraxia will have far greater abilities to understand speech than to express themselves with spoken words.

Children who are given the right intensive range of Neuro therapy programs with developmental apraxia will experience significant improvement, if not complete recovery, with this correct treatment.
Language development is the most important developmental accomplishment of early childhood and is the absolute foundation for literacy, educational achievements and post school opportunity (Law, Rush, Schoon & Parsons 2009). Without language there can be NO learning.

A secondary disorder that comes hand in hand with Apraxia is Auditory processing disorder (APD), also known as central auditory processing disorder (CAPD), is a hearing problem that affects about 5% of school-aged children. Children with this condition can’t process what they hear in the same way other kids do because their ears and brain don’t fully coordinate. This is a secondary offshoot from the Apraxia, and hence the need for this very specific and intensive and specialised Neuro programs.

The third and final hand in hand that comes with Apraxia is Sensory processing (sometimes called “sensory integration” or SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation or “sensory integration.”
Sensory Processing Disorder (SPD, formerly known as “sensory integration dysfunction”) is a condition that exists when sensory signals don’t get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively.
Both my girls have Apraxia, Central Auditory Processing Disorder and Sensory Processing Disorder. Normal Speech Therapy DOES NOT ADDRESS OR ASSIST any of these.

 

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