Some of you may have read the poem "Welcome to Holland" This was an essay written 1987 by Emily Perl Kingsley, about having a child with a disability.
Although this blog is mainly about our youngest child Ollie. I think it's time I introduced the rest of the family as they too are taking this journey with us.
We are a large family of 7. 3 boys, 2 girls, mummy and daddy and many many fish!
We first landed in 'Holland' 16 years ago with the birth of our first son though we didn't quite realise this until a number of years later. Daniel is and unknown entity. He had no diagnosis other than Sever Learning Difficulties. For around 13 years we have been fighting the system to search for what we no know we will never find.
The early days with Daniel was extremity hard. He was no-verbal until the age of 6 due to sever speech impairment, which cause alot of aggression and frustration generally resulting in violence towards myself. As the year went on he receive better care and support from the schools we noticed and massive change in him. He began to talk actual words though to this day he is still hard to understand at times. His frustration and violence was at a level we were able to cope with.
Cutting a very long storey short Daniel is now 16 years old and is about to embark on the biggest milestone of his life Daniel is leaving school! Yes our son is graduating!!! Oh how I feel so old! Thought Daniel will never be a doctor, a accountant. We hope that one day he may be able to have a little job. Stacking shelves, sweeping floors. May not seem much to some and may be classed as a dead end job but that the end of the day it IS a job and that is all that matters.
Our second born. Oh dear oh dear! He is a smart arse and don't we know it!
From an early, a very early age he excelled is every way imaginable. Walking, talking, reading, writing... I could go on and on this boy was/is a natural genius!
Ryan is also 'part time' carer . He earns money for helping me and his dad bath and entertain Ollie and believe me bath time no no easy task! At time it takes all 3 of us just to get the job done.
Although Ryan(14) is a grumpy teenager.. Well come on what teenager isn't grumpy? He has the patients of a saint when it come to his little brother. Always there when needed always willing to lean a hand.
This boy will make it very far in life!
Our third born. We finally had our little girl!
Sarah is a very emotional child, never really had it easy being born into a very chaotic family.
But this never stop her love for life. She is willing to try her hand at any thing and try very hard is what she does. She is a very keen Kayaker. Though this sport is very much seasonal due to our lovely British weather!
She is very artistic and creative. Always cutting something up!!!! She love to sing, to stitch ...... She has a fantastic love of life!
Sarah (11) is also embarking on a milestone in her life. In July she leave the safety of junior school to begin life as a senior. My baby girl is growing up too fast!
Our forth born. Another little girl.
She is the one who introduced us to the life of a preemie.
Katie born at 33wk weight just over 3lb12oz. Life was very hard again after her birth and she did not have it easy. She had IVH (Intraventricular hemorrhage) which caused aqueductal stenosis then in turn caused her to develop Hydrocephalus. Life was quite dark at this time.
Transfers to specialist hospitals miles away, MRI's, prospects of surgery...... It was enough to make the strongest of people crumble under the strain. Katie was fortunate not to need surgery and excess fluid was drained by ways of a large needle being inserted into her ventricles!!! Gulp! (Ventricular tapping). At the age of 5 weeks she was allowed home for the first time in her life.
At 10 month life for her changed once again. Katie began to have seizures.
These were not your typical seizure but one named A-tonic other wise know as drop attacks. The body goes totally limp, all muscle tome is lost and you basicly collapse in a heap where ever you stand! Katie also had what are called Absence seizures these very much resemble a person daydreaming but one which is hard to bring them out of voluntarily. EEG's did not capture such events but medication was started and over time these were reduced to a point we never saw the A-tonics again. Katie became seizure free at the age of 4 and by 5 was off all medication.
Katie at the age of 7 is now doing brilliant. Although she will always be classed as having Arrested Hydrocephalus it make no difference on her daily life. She is an over confidant little pickle who spend most of her day winding everyone up for laughs! She has also recently had bilateral squint surgery to correct a sever squint. It never phased her a single bit infact she was so grown up she actually decided her self to have the operation done (we always said we would let her choose) She even signed the consent form herself!
Our fifth born you know all about!
We are very very proud of each and every one of our children. They are what keeps us going and keeps us fighting for what is right day by day.
Our journey has lead us to meet some fantastic people, resulted in life long friendships.
Some families going through the exact same journey as us, where we are able to share the ups and downs, share suggestion and advice. We hold our head high, We celebrate every single 'inchstone' because let face it some of our kids will never make some 'milestones'. It is a life full of reward and as well as hurt but it is our life and one we wouldn't want any other way
Although this blog is mainly about our youngest child Ollie. I think it's time I introduced the rest of the family as they too are taking this journey with us.
We are a large family of 7. 3 boys, 2 girls, mummy and daddy and many many fish!
We first landed in 'Holland' 16 years ago with the birth of our first son though we didn't quite realise this until a number of years later. Daniel is and unknown entity. He had no diagnosis other than Sever Learning Difficulties. For around 13 years we have been fighting the system to search for what we no know we will never find.
The early days with Daniel was extremity hard. He was no-verbal until the age of 6 due to sever speech impairment, which cause alot of aggression and frustration generally resulting in violence towards myself. As the year went on he receive better care and support from the schools we noticed and massive change in him. He began to talk actual words though to this day he is still hard to understand at times. His frustration and violence was at a level we were able to cope with.
Cutting a very long storey short Daniel is now 16 years old and is about to embark on the biggest milestone of his life Daniel is leaving school! Yes our son is graduating!!! Oh how I feel so old! Thought Daniel will never be a doctor, a accountant. We hope that one day he may be able to have a little job. Stacking shelves, sweeping floors. May not seem much to some and may be classed as a dead end job but that the end of the day it IS a job and that is all that matters.
Our second born. Oh dear oh dear! He is a smart arse and don't we know it!
From an early, a very early age he excelled is every way imaginable. Walking, talking, reading, writing... I could go on and on this boy was/is a natural genius!
Ryan is also 'part time' carer . He earns money for helping me and his dad bath and entertain Ollie and believe me bath time no no easy task! At time it takes all 3 of us just to get the job done.
Although Ryan(14) is a grumpy teenager.. Well come on what teenager isn't grumpy? He has the patients of a saint when it come to his little brother. Always there when needed always willing to lean a hand.
This boy will make it very far in life!
Our third born. We finally had our little girl!
Sarah is a very emotional child, never really had it easy being born into a very chaotic family.
But this never stop her love for life. She is willing to try her hand at any thing and try very hard is what she does. She is a very keen Kayaker. Though this sport is very much seasonal due to our lovely British weather!
She is very artistic and creative. Always cutting something up!!!! She love to sing, to stitch ...... She has a fantastic love of life!
Sarah (11) is also embarking on a milestone in her life. In July she leave the safety of junior school to begin life as a senior. My baby girl is growing up too fast!
Our forth born. Another little girl.
She is the one who introduced us to the life of a preemie.
Katie born at 33wk weight just over 3lb12oz. Life was very hard again after her birth and she did not have it easy. She had IVH (Intraventricular hemorrhage) which caused aqueductal stenosis then in turn caused her to develop Hydrocephalus. Life was quite dark at this time.
Transfers to specialist hospitals miles away, MRI's, prospects of surgery...... It was enough to make the strongest of people crumble under the strain. Katie was fortunate not to need surgery and excess fluid was drained by ways of a large needle being inserted into her ventricles!!! Gulp! (Ventricular tapping). At the age of 5 weeks she was allowed home for the first time in her life.
At 10 month life for her changed once again. Katie began to have seizures.
These were not your typical seizure but one named A-tonic other wise know as drop attacks. The body goes totally limp, all muscle tome is lost and you basicly collapse in a heap where ever you stand! Katie also had what are called Absence seizures these very much resemble a person daydreaming but one which is hard to bring them out of voluntarily. EEG's did not capture such events but medication was started and over time these were reduced to a point we never saw the A-tonics again. Katie became seizure free at the age of 4 and by 5 was off all medication.
Katie at the age of 7 is now doing brilliant. Although she will always be classed as having Arrested Hydrocephalus it make no difference on her daily life. She is an over confidant little pickle who spend most of her day winding everyone up for laughs! She has also recently had bilateral squint surgery to correct a sever squint. It never phased her a single bit infact she was so grown up she actually decided her self to have the operation done (we always said we would let her choose) She even signed the consent form herself!
Our fifth born you know all about!
We are very very proud of each and every one of our children. They are what keeps us going and keeps us fighting for what is right day by day.
Our journey has lead us to meet some fantastic people, resulted in life long friendships.
Some families going through the exact same journey as us, where we are able to share the ups and downs, share suggestion and advice. We hold our head high, We celebrate every single 'inchstone' because let face it some of our kids will never make some 'milestones'. It is a life full of reward and as well as hurt but it is our life and one we wouldn't want any other way