Camden's schooling and therapies

Camden James Harwood is our brave, smiley, charming, charismatic, soft, sensitive and inquisitive 4 year old little boy. He has had to endure a number of issues in the short few years he has been here.  He has had and still does have a range of physical, neurological and psychological issues that have hindered his overall development.

Camden had a traumatic birth as my placenta had unknowingly began to shut down and slowly starve him over time. Due to this stress he was born with very slight oxygen deprivation, small, malnourished and minutes from death. No one was sure if the oxygen deprivation was long enough to have any long lasting damage to his brain, only time would tell. As a baby I could only describe him as odd. I use this word because although we adored him to bits, his behaviour and particular ways in which we had to do basic tasks like give him his bottle or put him to sleep were just odd. Nothing was straight forward and we were kept on our toes at all times with very little sleep. Still, we hoped this was going to be ok and as this was our first baby we didn't have anything to compare it to but as time went on, it became more and more evident that something was very wrong.




Camden was also born with a visual disability that we only picked up a few months later. None of the ophthalmologists to date have been able to give an official diagnosis however they are certain it is not linked to the birth as it is a loss of pigment on the retina with a squint, nystagmus and photophobia which points more towards something genetic like Ocular Albinism although I still question whether malnutrition in the womb could play a part in all of this. One can only test for a diagnosis when he is older and can only be done at the London Eye Clinic in the UK with a special test called an ERG. Although at 8 months old he was thought to be almost blind, there has been remarkable improvement yet there is still a life altering ailment that cannot be corrected in any way. We have been told he probably won't ever drive and will need special help to learn to read and write. From an outside perspective, one wouldn't think there was anything wrong with his eyes other than he wears glasses or that he is the cool kid on the beach with his sunglasses on. Camden has learnt to adapt to his surroundings and quite frankly, doesn't know any better. It is us, his parents, that know to watch him like a hawk in new environments ready to catch him or warn him of the step he is about to trip over or the cliff he is about to walk off. We eventually invested in a special toddler helmet that he wore most of the day to protect his head from all the falls he had. There were times I purposely didn't take him out in public due to all the bruises on his head and face, I couldn't face the judgmental looks nor had the energy to explain. We could not and still never relax as Camden is a real little adrenalin junkie with an extremely high pain threshold.








For the first 3 years of his life he suffered from an immune disorder, his body failed to produce enough IGA which are your infection fighters found in the mucus linings (ear, nose, throat, gastrointestinal tract) which resulted in him getting every virus and infection under the sun. Some examples were multiple episodes of gastro, Rota Virus, pneumonia, bronchitis, ear infections, sinus infections, asthma, croup, baby measles, strep throat, tonsillitis, allergic reactions etc We lived in trauma in and out of hospital having roughly 4 healthy days between each illness from the moment he was born to roughly about 6 months ago. He also suffered a horrendous freak accident when he was 2 breaking his femur (later finding his calcium levels to be extremely low probably once again from the starvation in womb).
In the middle of last year we started Camden on a round of immunoglobulin injections to try and help his immunity which have made a massive difference!





Camden also never babbled like he should have. He started once at 7 months old and one day a couple months later it suddenly vanished. We had every test done, internal and external hearing tests, neurologists, two rounds of grommets, adenoids out, diet changes, OT, physio, speech therapy, ophthalmologists and even expensive genetic testing sent to the UK to try and find explanations for all of these issues but we never got any answers. He has low muscle tone in his mouth and tongue which means he still drools and has a problem chewing and swallowing textured or whole foods so we still need to mash or blend up his food to avoid gagging or vomiting. He has improved and can eat sandwiches and biscuits but with his sensory issues also having a strong hold on him, eating is a big issue. I must make it clear though that he understands what we are saying very well.

We were and are still told by his neurologist that he doesn't fit one box, he seems to have a little bit of everything and only time will hopefully give us more information. Through all of this, although an absolute fighter, he wasn't meeting milestones he should have been and due to his vision, chronic illness', speech and keeping in the back of our minds about the possible oxygen deprivation at birth, we knew he needed intervention and he needed it asap. Camden has seen many specialists since birth,some on a regular basis and still does.




Currently to date the progress he has made astound the specialists and they all say they would never have imagined the child Camden is today and that is all due to the intensive therapeutic intervention we have given him, the amazing fight in him throughout all of this and lots and lots of prayer!

Camden will be 4 years old in May but is the size and development of a 2 - 3 year old except for his speech which is younger. The speech disability is possibly our biggest concern at the moment as this has an effect on his overall development. At the time when we began his course of immunoglobulin injections when he was 3 years old, his speech was that of a 6 month old but once his body began to get stronger and he had less sick days and more healthy days he began to develop and started to make sounds and some words. His speech therapist then began to teach him a basic sign language called Maketon and this has made a tremendous difference in his and our lives as he is so desperate to communicate. There are signs of dyspraxia yet not enough for a diagnosis. He is unable to socialise properly, has ADHD, sensory processing disorder and some high functioning autistic traits however his intellectual ability is very bright and he needs constant stimulation in the correct environment. As I mentioned earlier, he doesn't fit one box, he has a little bit of everything often having one issue overlapping the other.
It has become very apparent that Camden can no longer cope and get the correct help needed in a mainstream schooling system and is in urgent need of a specialised programme with one on one intervention.
Camden needs constant 24/7 supervision and stimulation which is exhausting and challenging on us yet the results speak for themselves and are just so rewarding. Camden is own biggest cheerleader. Every time he learns a new word or is able to perform a task by himself his face lights up and he will run to myself or his dad clapping his hands saying ''YAY!''. He struggles to do most basic tasks by himself like undress, potty train, drink out of a cup or even hum a song. He has no understanding of danger or social boundaries and will go up to any stranger, take their hand and walk off with them. He doesn't play by himself but demands someone's attention, presence and help at all times. He has obsessions and fixations that he could spend all day doing if we let him like pour and mix like a baker man.  He is never without a cup or pot and a spoon. Sleep is erratic and unpredictable often having only 4 to 5 hours of sleep a night for weeks until suddenly he begins to sleep through for whatever reason. He has a really hard time in large groups or when people are having conversations around him, he becomes either extremely hyped up or agitated to the point of tears yet he thrives on social interaction. He has weak fine motor skills so even switching a light switch on and off takes great effort for him. Even though these things prove to be difficult in our everyday lives, I have to remind myself that there was a time that Camden didn't show any affection at all, didn't point or even clap. He couldn't talk, never held my hand or let me cuddle him when he was sick. The improvement he has made is a complete 180. He can say little things now like tell me when he is hungry, thirsty, wants to sleep or is finished. He can say yes and shake his head for no. He can indentify and say or sign a large range of everyday items and count 1, 2, 3. Recently he has been trying to say i love you by saying ''aaai, uuuuh, ooh'' with a cheeky giggle and a kiss afterwards (this alone is all worth it!)


We believe with all of our hearts that Camden could get to a place of being able to be integrated into a small mainstream school environment in a few years time but only if he gets the correct intensive intervention now while his brain is still pliable and impressionable. If he has developed so much in such a short space of time, just imagine what could happen if he was put in the right environment with the right people every day but in order to do this it does, unfortunately, cost us money that we do not have. So far he has been in a lovely small play school with a privately hired facilitator but he has outgrown this environment now as his issues became harder to deal with. Apart from the years of medical and therapy bills that have left us in debt (medical aid only pays a small portion or none at all), hiring a facilitator, having speech therapy 3 times a week and school fees have been costly for us. Camden desperately needs to have OT again but we had to stop this due to not being able to afford it, never mind the swimming lessons he needs to have. So after doing some research and interviews we have found the most incredible private school/facility called The Centre for Play and Learning that specialise in children with issues like Camden. They have a full time OT, speech therapist, psychologist, physio and music therapist as well as a team of highly trained tutors and class assistants on board. Camden would get one on one intervention and have the programme they set up for him to be carried on in our home environment but at a high financial cost. This isn't just what we want for him, this is what he desperately needs and so we have set up this account for anyone that would like to contribute to helping us help our little guy be the very best that he can be.


Our financial goal is the total amount we would need for one full year of school fees, extra speech therapy, swimming lessons and the help of Camden's amazing facilitator in our home environment. In the meantime, we are taking a leap of faith and he begins at this school next week.

We are putting our full trust In God and would be eternally grateful for any kind of help we recieve, no matter how small.
You will be blessed by Camden's contagious smile and the updates I will post on the progress that I know he is going to make.
 
All our love
Johan, Jenna and Camden