SEN Journey - Monkey Boy

At the age of approx. 13 months my boy woke up one morning and it was like every word he’d learnt so far had fallen out of his head. He started rubbing his head along the carpet and stacking up toys in complex lines. A quick Google later and we were terrified to discover the possible reason - Autism.


We spoke to friends and family who suggested that it could be because he was learning to walk and was too busy concentrating on this new milestone to talk. We hoped this was the case but deep down we knew that it was not.


At 18 months we took him to the doctor who quickly concluded: “I’m not going to make a decision based on 5 minutes of observation, you are his parents so, if you say he needs to be checked, then let’s do it”. At the time, we took it for granted, but after reading so many horror stories about people fighting to get a diagnosis, we will forever be grateful to this man. After seeing a paediatrician who specialises in Autism my boy received his diagnoses of ‘Autistic with additional learning difficulties’ and was eventually enrolled at his first SEN school.


We had a choice of two schools and, to help us decide, we took him along for visits, released him into the school and stood back to observe the chaos. Whichever school handled him the best was the winner. He did very well at his new school and stayed there until the age of 5. We then visited other schools to see where the next best step would be.


From the choice of 4 special needs schools, we finally settled on one by following the same method as before. Unfortunately, they were not as well equipped to take our son on as we thought, and after 3 years there they suggested we looked elsewhere. We were devastated, it took so much work to transition him to the new school and we couldn’t believe we were going to have to do it again. We felt like we had failed him and made a huge mistake, we also felt let down by the school. They had promised so much and we’d hoped this was the school he would stay at until the leaving age.


Off we went again to choose between two more schools, using the same process again, but this time armed with a mountain of questions. We visited his current school 4 times before deciding on this particular one. He’s been there for 2 years now, is finally settling in well and hopefully will finish his schooling there.


Something I’ve learnt from this whole experience is to do your own research and speak to other parents at the particular school you are interested in. Schools will generally promise the world to you but may not actually deliver once you are through the door. Also, don’t be afraid to bombard the school with questions. We contacted the school every time we thought of a new question which was every day for about 3 weeks. Ignore every instinct telling you that you’re being annoying - use it like a test for the school because, if they get annoyed with your constant questions, then perhaps they don’t have the right temperament or enough patience to be teaching your child.


From my experience, Special Education has a long long way to go. However, I myself was a disabled school child in the 80s/90s and standards have definitely improved a hell of a lot since then. We try to live one day at a time and are heavily led by our son. We learn his needs from him directly, by listening and observing his struggles. Mostly, all he wants is something that can never be bought - Time. We learnt years ago not to care about what anyone thinks, to ignore the staring and the comments. At the end of the day, it does not matter what anyone else thinks - they are not essential to your child’s welfare, you are.


Justin



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