Hi there Again im here with another blog post from my wife who is a sen law advocate
The blog post of Anxiety written by Lyndsay Critchlow
What a difference a school makes!
This post is more for me than it is for you.
Today we had a Paediatrician appointment for W. It was a well-needed appointment.
W has always had difficulties with movement and pain, and we had been trying to figure out what was going on with him being around 3 years old.
W had physio, seen orthopaedics, different pediatricians etc. It was hard as we could explain lots of random things that we noticed but we could not really triangulate what exactly it was that was going on.
We had thoughts of Developmental Co-ordination Disorder or even Ehlers-Danlos syndrome. Things we were certain about are his difficulties pain, exhaustion, his fine gross motor skill difficulty and he most definitely had some hypermobility.
We would go to the appointment where the professional would do a quick check and declare things like he’s just too bendy.
We then actually last year had an awful appointment where the professional would not look past weight. He does have weight issues that have come on through his lack of ability to engage in activity and the fact that he has a very restricted beige diet. This professional even decided to question his Autistic diagnosis as she felt he was too articulate to be Autistic. The saddest part of all this for me was the effect it had on W. He wanted to leave she tried to insist he stayed. She said he must face up to the fact he needs to do something about his weight.
W spent weeks asking us if he was ‘fat’ and if he should stop eating. The trauma for him from this appointment was immense and took considerable time to settle this. It also put a halt to all we were doing around food and working to increase his variety of acceptable foods.
We submitted a complaint to our local trust after this appointment. We had spent many years fighting for everything for W, Education, diagnosis and the correct support. We had got to a point where we felt we need to try and incite some change, to get W the right support and also to ensure that the situation that had happened a
bove never happened again.
To get to where we are today, I need to go back again. I have taken you briefly through what we had gone through on the medical side but there were also other areas that made it challenging to get the difficulties W was having seen.
We go back to as far as being in nursery and then onto school. Although there was some support in one nursery that W attend, we did find that what the school and nursery had input-wise seemed to trump what we had to say as his parents.
They often referred to the issue as being parent issues, one school even stated that they would argue any of his diagnosed difficulties as they felt the only issue was an over-anxious parent and then started a chain of events that lead to us having to prove that we had not fabricated or induced any illness and we were not emotionally abusive. We had got to a point where money was seen as more important than W’s needs or difficulties and the education system was looking for ways not to provide support
to W as it was going to cost them.
We had no choice at this point but to fund an independent report to prove W’s difficulties and to cut another story short leading to us fighting and getting W into the school he’s in now.
This for us was the breakthrough. The school could see what we saw, they understood they supported and worked with us and W. They recognised the difficulties we had been trying to explain to people and documented this with their professionals, particularly the Occupational therapist. This opened a new door for us today.
So, the very reason I decided to write today was to help me in processing what has happened. Today was the first time I have walked into an NHS patient room and felt like someone sat a listened. She saw she understood, and she had the evidence she needs from the school.
Today it was confirmed that W does have Development Co-ordination Disorder. He also has hyper-mobility. It was felt that he would not reach the score for Ehlers-Danlos syndrome but there were some things that showed defiantly Hypermobility, like the fact he was dislocating his index fingers in front of her and popping them back in.
She also said that she would be referring him for bespoke insoles and blood tests for Growth and genetics.
Today was very bittersweet, we were listened to, and we were supported but sadly W complex profile growing as he does, and it’s sad at times that he suffers and there’s nothing we can do but continue to try and help him to grow stronger and be here for him for everything that he needs.
And it is bittersweet to hear all of this after so long, so it good to have the right school in your corner :)