Published on 12, July, 2020
Hello, I have just joined the community as i feel like i have no one to talk to... so i'll start by saying Hi!
I have a daughter who is diagnosed ADHD and awaiting an ASD referral, all in hand and happy with help and support i receive from friends, family and professionals.
I also have a son who unfortunately, I am not getting the same response in support for. He is on the ASD waiting list (hopefully january time) He has been on a one plan since he started reception and school has many things in place to help him cope throughout the day, including ear defenders, social stories, feelings cards and quiet breaks.
I am always being told I am either being an over-baring mother, I'm mollycoddling, I'm too protective, I'm too over the top by even my closest friends and its breaking my heart. I know my son and I know whats not 'normal', yet I'm sitting her feeling like I am going crazy and no one listens to me. I just cant cope with the negativity anymore.
He lives talks and and acts in the land of nintendo, every task we do or walk we go on is a level on mario, our conversations are mario topic, we never really talk about anything else, no matter how hard I try to talk about other subjects, he ingores me and continues with his thoughts. He must always have my attention on him and his interests and cannot understand when I have other things to do or I am in the middle of a conversation.
I have been informed by professional workers that he has sensory processing disorder. Hes extremely sensitive to noise, taste, texture. He will vomit when over exposed to these things, for example, going to busy soft play centers will make him vomit. He can only eat certain foods without vomiting and has a very small food selection he feels safe with. I am always trying to encourage him to try new things even if it is just touching or smelling it. I'm not able to give him different brands because it will cause this to happen still.
He is selective mute, with final word disfluency, he really struggles to get his sentences out and causes a lot of frustration for him when people don't understand what hes saying. I am always told by everyone around me, there is nothing wrong with his speech and I'm over thinking it. which hurts because I see his pain and hurt from not being understood.
He doesn't really play, he has a select few toys he sticks to which involves organising them and will repeat the same games with them. He does not enjoy playing with other children. If a child tries to approach him to play at a park he will go mute and hide. There will be little to no communication.
I have so many things I could sit here and write but I feel like I would be here all night... so if you've read this, thank you... I guess I'm just hoping to be heard.
You are an amazing mum! You know your child better than anyone else.
40 odd years ago my mum saved my life by knowing that I did not show pain like other people. By insisting and contradicting two different doctors she got me to hospital in time before my appendix burst. (I was only diagnosed this year - so she didn't think of me as autistic, but she knew me better than anyone else could)
Other people do not know, or understand or even perceive how we act properly. You know best., You are amazing.