On our holiday in Italy last week I started writing a short piece on Dregan, and it turned into an essay. I can't use it on the article I needed it for, but I can post it here....
Grab a brew and a biscuit (or 2).... wait a minute - Ill post it in 3 bitesizes parts.... you can still have a biscuit though ;-p
Dregan: Birth to diagnosis..... (in 3 parts!)
Dregan was born in 1999. Labour started as textbooks tell
you it will. Then it all changed. I was in active labour for 36 hours, and
eventually wheeled down for an emergency C-Section under general anaesthetic.
Dregan was not moving down as expected, and his heart rate was dropping
dangerously low. I never really knew what happened, nobody told me, but I do
remember it was longer than expected for them to bring me round. I recently
found out, some 15 years later, that Dregan was Bradychardic and had some difficulties
breathing.
He was taken to Special Care as he was ‘grunting’ and needed
help breathing. I was very poorly so it is all a bit of a blur, but I remember
I was not able to feed him. He was in Special Care for 9 days. Nobody really
explained what was happening, and after we were sent home there were no follow
ups. ‘Just one of those things’.
Dregan could not breastfeed, he didn’t have the sucking
ability, and we used bottles with bigger holes. His development was delayed, he
sat up, crawled and walked later than expected. And his speech was severely
delayed. He struggled to eat, and could not chew. He was on baby food jars
until he was 2 years, and then he would only eat certain foods. He did not eat
anything messy – he was quite picky! At his 18month check-up I expressed
concern, to be told that it would come on by his 24month check. I pointed out
that he was actually 23months and they were late with the check. The health
visitor showed some concern, but didn’t really give any advice.
At 3 years old, it was more apparent that Dregan was having
difficulties with his speech and development. He was sent for a brain MRI, but
nothing obvious showed up, and we were told, again, ‘we don’t know’. He was
diagnosed with Speech and Language difficulties, and some developmental delay.
Dregan is the eldest in his school year, so he was almost 5
when he started full time school. He was obviously not on par with his peers,
but ‘he will catch up’. He was put into a specialist school class called a SERF
unit (for speech and language disorders) and they said children usually spent
18months maximum in there, and then moved on into the mainstream classes.
Dregan was there the full 3 years, and then he was diagnosed with ‘Verbal and
Motor Dyspraxia’, ‘Semantic, Pragmatic disorder’, ‘Sensory Perception
Disorder’. We were told if he had these diagnosis before he started the SERF
unit he would not have been allowed to go there.
He moved into mainstream school, because he had outgrown his
stay at the SERF, and there were no other options. We were by this time seeing
many specialists, Paediatricians, Physical Therapists, Occupational Therapists,
Speech Therapists, and Educational Psychologists. They all did their individual
assessments, and gave him a few more labels. I applied for a statement of
Special Educational Needs, and tried to get them all to talk to eachother. By
this time it was clear Dregan was Autistic, and he still had severe speech
issues. He was 8 when he received his Autism diagnosis, and his statement. I
have to say, the only reason the Statement was granted was because we mentioned
we were moving out of the area, and we were actually told they would grant it
because we would be another Authorities financial responsibility!
When Dregan was in year 4, we moved over to North
Lincolnshire with my new husband, and he attended a small village mainstream
school. By this time his Autism and Learning difficulties were more pronounced,
he was not reading and writing, and he was not an active part of the
educational class. We had to start again with the specialists. We met some
wonderful supportive people, who we still feel close to now, he had a lovely
time at the school. But it was not an educational experience for him. And we
still didn’t have any answers, just more questions as time went on.
Dregan now had a long list of diagnosed conditions, and we
were even more convinced there was something else causing it all. We were
regularly told it was unfortunate that he had so many separate issues, and its
almost like they all interact with eachother. We simply could not get
departments to talk to eachother. We had people not believe us when we told him
he got hiccups every day, multiple times a day, and that he seemed to struggle
to swallow. We had people think we were making it up that his hands were ‘freezing
up’ and that his fingers would go extremely stiff for a minute, for no apparent
reason. I was saying at every appointment that I felt he didn’t have much
strength in his jaw and hands/arms.
We are fighters, and we didn’t take no for an answer. We
just knew there was something other than ’Autism’ causing his difficulties. By
the time Dregan went to high school (a specialist school), he still could not
read or write, he was going backwards in some respects. He struggled to know
when he needed the toilet. He could not express himself, and it was becoming
more apparent that he didn’t always understand what we were saying. His
cognitive difficulties were more pronounced as he developed in other areas.
But, he had a diagnosis of Autism, and everyone kept saying ‘oh, he’s Autistic’
– other children with Autism could read and write, and walk without banging
into things or falling. This wasn’t an acceptable response to us.
This went on for so many years. In between all this we were
struggling with Dregans younger brother, who was subsequently diagnosed with
ADHD, Aspergers and Hypermobility. He was the other end of the scale to Dregan
though. (Xander has since received a negative test for DM)
At the end of 2013 we were at another Paediatric assessment,
and the Doctor said he had ‘run out of ideas’. He agreed to send us for another
MRI, upon our firm request, because there must be a reason his hands were
seizing up so regularly. Multiple times a day, sometimes just when he moved his
fingers. Also, he had gone further backwards in his education and the school
test results were showing this. So, January 2014 he was sent for an MRI under
general Anaesthetic......
Part 2 to follow......
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