I want to tell you about our family struggles with a child with additional needs and misdiagnosis. Hopefully what we have been through can help somebody else in a similar position to get the right help and find the courage to fight for it.
You may or may not know that I have a very handsome 13 year old son called Owen. He is clever and talented at anything he sets his mind too.
(My son, in his happy place! Yes, up a tree :) )
Unfortunately he has a few additional needs that have become more and more of an issue as he has gotten older, but this post is about his early years and lack of medical professional knowledge and support.
From the moment of his birth, we struggled. I had a very traumatic birth; after 30 hours of labour he was stuck in my pelvis, his heart was struggling so they had to act fast and take me to surgery to have an emergency C-section.
This in itself was a nightmare as the operation went wrong and they cut through my bladder and when they finally laid him down next to me on the bed rolling us both towards the ward, I looked at him in shock and didn’t know what to do.
After a week of being in hospital (there were other complications regarding the surgery, so I had to stay longer), I was finally home with my son and my partner (now my husband). I was in so much pain after the surgery and could hardly stand or walk, let alone lift my baby. I couldn’t feed him naturally and I felt as though I had let him down and failed as a mother on so many levels… birth, feeding, physical care and love.
As time went on, I started to notice he didn’t react the same way as other babies. He never smiled or laughed, never really played; he just watched everything and was indifferent to everything around him. I was also suffering with post natal depression at this point, so blamed myself for his unresponsiveness, thinking that I was just not making him a happy baby. Little did I know, this was one of the very first signs that he was Autistic; something that none of the healthcare professionals picked up on.
When he was about a year old, he started to have what we thought were Febrile fits. We called the ambulance as it was so frightening! He was taken to hospital and kept in overnight on a couple of occasions for observation and we were told that he must have had febrile fits, even though he DID NOT have a temperature and was completely lucid throughout the episodes, reaching for me scared. This was another sign that there was something wrong, but this time, it was Tourette’s syndrome. Again, this was not actually picked up by any medical professional until he was much older at 9 years old.
He learned to walk and talk very early on, walking by 9 months old and talking by 18 months. He could recognise letters before he could speak, picking out the alphabet when you asked him a specific letter. The nursery he went to (when I went back to work) put him in the 2+ room because he could walk and talk as well as the older children. By the time he was old enough for school, he could read, but he struggled to play with other children. A sign of high functioning autism.
Once he started mainstream school, it was noticed by his teachers that he did not share with other children; in fact he would hide a specific toy at the end of the day behind the books in the library so that he knew where to find it the following day and nobody else would touch it. He would also arrange toys in a specific shape or patterns and not let anyone else move them. The first signs of OCD.
He could not sit on the carpet at story time and would have to be up and about constantly fidgeting. The teacher pointed this out to me and said to take him to the doctor as he could possibly have ADHD. This was the first time a professional had pointed any of this stuff out to me and I was quite shocked as I hadn’t realised he was different up to this point you have to bear in mind I had no experience with other children. He was my only child and I was never around other children before that. So we took him to the Doctor. Unfortunately, even from that early age he could manipulate the world around him and mimicked behaviour for short periods of time. After a 3 minute assessment in the doctor’s office, they refused to refer us to a paediatrician, saying he was fine.
There is so much more to tell, but I find it shocking that by the age of 4, all the conditions ADHD, OCD, Autism and Tourette’s were apparent yet no medical professional had picked these things up. I will talk about his older years in another post as I want to emphasise here that these things were all apparent at a young age and they should have been addressed early on, but the system failed him. If I had known better, perhaps I could have fought harder for him to get the help he needed, but I just didn’t know that he was different, as silly as that sounds reading all of this information.
I hope that if you are in a similar situation, you can find strength from this post and know that you don’t have to accept what the doctor’s tell you. If you know something is not right, keep going back until they listen to you. I wish I had done it years ago. He is finally receiving the treatment he needs, but at 13, he has struggled for way too many years as a result of their lack of knowledge and care.
(My boy, Owen xx)
If you have any questions, please feel free to ask, I will do my best to answer them if I can.
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