|Theo Lucas Kingsley Monk:|
|Our beautiful boy|
Every parent expects that there child will develop in the same way as
other children – the only question is how quickly! It can become a bit
competitive, even from birth! “Is s/he sitting/ crawling/ walking … yet?”
When these skills do not appear until well after every other child of the
same age (or they do not appear at all) then parents start to worry. As
an educational psychologist at the time of Theo's birth, I suspected
things were not going well and was soon worried, especially as I had
had one very healthy and “bright” son.
Theo's development was severely delayed from birth. His reactions to
sensory information were impaired by very poor (or possibly no) vision
and hearing at birth. He also struggled to feed due to poor muscle tone.
He suffered from acid reflux. He therefore found it difficult to suck from
a bottle (I abandoned breast feeding as his weight plummeted) and
when he did feed he had a severe acid reaction to the milk. He was a
very unhappy baby who slept or screamed! I also carried him around
with me more than I had done for Alexander, simply because Theo
settled better when close to me.
As these difficulties in feeding were so apparent, the main priority
was to feed him. However he did not respond in other ways: he did
not smile until he was 3 months old. When he did eventually smile it
was a very crooked smile, so I did not know if the delay was physical
(i.e. the muscles in his face were not able to produce a smile) or he
was so uncomfortable he had nothing to smile about! The lack of
smiling is very difficult for a parent when it comes to bonding with
this baby who screams so much! I was getting no positive feedback
from Theo and I felt in a constant state of anxiety, seeking help from
as many people as I could!
At this stage doctors can be reticent to say how delayed a child is,
because things can change radically. However, with Theo things
changed very slowly. Gradually we came to realise the extent of his
severe developmental delay. It also meant seeing many specialists
for each area of his difficulties. On account of my professional
experience, I was not fazed by this necessity, but as the mother of
a tiny screaming baby, it was stressful. Having Theo examined by so
many doctors became impersonal at times. It was clear that they too
were puzzled by his lack of responses but the many blood tests
revealed no obvious genetic defect. However, one paediatrician
remained convinced there must be a reason when he told us, when
Theo was 6 months old, “I am sure I have seen his face in a textbook
somewhere”! Not the best diplomacy with anxious parents! It was so
refreshing to meet the paediatric ophthalmologist days later, who
immediately picked up my son as if he was a “normal” baby and spoke
to him: “Hello, little fella!” This may sound a little thing, but to see your
baby treated as a baby and not just a medical specimen means so
much, especially in those early anxious days.
As time went by we realised that Theo's development was not just
delayed but profoundly impaired. There are many terms to describe
this condition: profound developmental delay, profound and multiple
learning difficulties (PMLD), and complex learning disabilities. As we
found with Theo, children with this degree of developmental difficulties
are very different from their peers in how they learn and progress. I
always thought of Theo as “developmentally different”! Delay implies
that they will “catch up”, but in Theo's case this was not going to
The skills that Theo learnt or developed were often incomplete and did
not necessarily transfer to new situations or promote other skills. For
example, Theo learnt to pick up a open cup (he struggled with lidded
cups) and drink for it, but he could not put it down: he simply dropped it!
Theo never learnt to put anything down. It meant we always had to be
on hand to catch a cup or fork after he had put it to his mouth. He was
just beginning to look on the floor if he dropped specific toys but he
had not quite worked out how to bend to pick them up: this was the
latest physio target!
Watching Theo attempt tasks such as picking up objects or moving
from one place to another highlighted how difficult these skills were for
him: skills that are often learnt early on in a child's development. The
development of these skills was also impeded by his lack of
understanding. He did not know where or why some things happened.
He did not know the name or function of most everyday objects, or the
names of things such as animals (he sat on a horse but did not know
what it was). His visual impairment meant that he saw things better in
a vertical plane – but I suspect his vision was also impaired by autism.
He often did not use his vision, but unexpectedly could see objects
outside an obvious line of vision on occasion.
On the other hand, Theo derived much pleasure from books. From an
early age he seemed to know instinctively that the pages went from left
to right and his eyes scanned a book held up, in this way. I do not think
he developed a concept of a story but he recognised favourite books by
their cover and could tap the book of his choice when presented with
two books. He also learnt to do the same with DVD boxes! He could
choose which Something Special DVD he wanted – and the covers
are very similar!
The term complex learning disabilities is very apt: it is all very complex!
There are no text books to give a parent guidance (or hope) as to how
a child with these disabilities will develop. It is an unknown territory. It
takes a long time to adjust to having a child who is different. It does not
come easily, especially when he does not smile at you! It takes courage
to face up to the fact that the list of things that your child CANNOT do is
far longer than the list of things they can do. There comes a time when
you can be proud of the accomplishments and ignore the development
It can feel very lonely without the support of family and friends. My
advice to any parent in this situation is to ask, ask, ask for help. There
are no heroes, only people who work hard. I was experienced in the
field of special educational needs. I felt totally deskilled in the early
weeks and months until I gradually accepted that my child was going
to be very different. It does not happen overnight, but the love which
does develop is the most powerful emotion.
I only had 6 years, 3 months and 16 days with Theo.
It was worth every second.
Newbold on Stour, Stratford upon Avon, Warwickshire.