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Autism: Who am i to complain?

I have had the great honour of being part of Mums Advice for 2 years now. It’s taught me so much more than I ever knew when I first became a mum at the age of 19. This is for all the mums that maybe going through something similar or are just not sure.

When I gave birth to our second son at the age of 27, we were so excited having already been parents to our first son Trey and finally taking the plunge and having our second. Tien was born two weeks early and was my surprise VBAC, after an emergency c-section 8 years previous. His birth was the most amazing experience of my life and he was such a beautiful baby, slept well, ate well, was no trouble at all. He hit all his milestones until 8 months when I noticed he wasn’t babbling. He didn’t look when we called his name and slowly he started to appear distant, like he was in his own little world. I remember my husband often trying to make him smile and saying “tough crowd” as he never really responded, he smiled at things randomly and never at things we did to try to entertain him.

By 15 months he wasn’t saying a word, in comparison to my friends children who were repeating 15-20 words and who were similar in age. I took him to our health visitor and pointed out my concerns, she sent him for hearing tests which came back normal. They put it down to “speech delay” and told me they would reassess when he was 2. “2?” I thought, that’s way too long if there’s really something wrong. Thankfully I had been working with a good friend whose son and grandson are autistic. I often spoke to her about Tien and without saying the words and listening to her experience I knew Tien had autism. He turned 2 and still never uttered a word, instead he screamed and covered his ears at different sounds not necessarily loud or high pitched just noises he couldn’t tolerate. He would point to things instead of asking for them and would become frustrated very easily. By the age of 3, we sent Tien to nursery in an attempt to “socialize him” as we were advised by our Health visitor. Nursery just highlighted even more how behind he was and it brought to the forefront that he was definitely autistic.

By the time he was almost 4 and before he had his assessment, we already were working towards the fact that Tien was autistic and I had applied to the council for an EHCP for him. Our council had an early autism team who were amazing, visiting us at home and at school for one hour, doing different activities with Tien, working on his eye contact, pen control, numbers, letters and his imaginative play. He thrived on this programme and amazingly he seemed different, made eye contact, using the PECS folder he would bring us pictures of the items he wanted. We were finally turning a corner.

The day of Tien’s assessment they told us there and then that they believed he was autistic. We were so relieved. The doctor, in shock, asked us why we had not broken down at the news. “Because, we said, we already knew deep down.” Tien’s diagnosis wasn’t the end. It was the beginning of an uphill battle for our precious 2nd son. He did really well at nursery but then the school we had chosen which had an ASD resource began to complain about him. They knew he needed a 1-2-1 but insisted on using unqualified TAs already employed at the school instead of using the funding they received for Tien to hire someone specialised. They are always trying to get Tien removed from the school instead of putting the adjustments in place for him to thrive. They fear the different and instead of trying to be better they try to get rid of the problem. We will never let Tien down though. We will fight for him everyday, making sure he has only the best in life. It is not easy, we have good days and bad days but Tien has now, at the age of 6, started to speak, write and spell. One of the best days of my life was when he called me Mumma. I could have bursted with pride.

I’m so glad I followed my instincts when I felt something was wrong, my advice to anyone, don’t give up if you feel there maybe something not quite right. Don’t be fobbed off. Prepare for the worst, that way if things aren’t good, you are equipped to hand it. If they are better than you expected then even better. We believe that we were chosen to be Tien’s parents because we are strong enough to fight for him. There are bad days, don’t get me wrong, when I cry in the toilet, wondering what I did wrong in my pregnancy to having caused my beautiful baby to be autistic?, but then I shake myself and remember he’s a gift given specially to me. Who am I to complain?

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