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.
Hi KH
Welcome and thank you for sharing your story. I am sorry that the people close to you are not supportive for you and your family at the moment. Unfortunately I hear too often if people don’t understand something they kind of pretend it isn’t there. Could you perhaps find some basic educational information to send on to them to try and give them a better understanding of what neurodivergence means? It is very unfortunate that you don’t have that support around you at this difficult time which is a shame.
My son is age 9yrs (year 5) he is masking a huge amount both at school and in social situations. We have not disclosed that he is autistic to anyone else yet as we would probably get a similar response from people close to us as you have shared. He has his assessment in a few weeks which has taken over my head with worry and anxiety as this is very important for him to get an early diagnosis. The annoying thing for me is if you explained to people you had an injury or some type of disease it would not be questionable so why must we convince anyone else about being neurodivergent.
You sound like an amazing mother to your children who is doing her best for their future so as not to struggle as many late diagnosed adults have.
good luck