Struggling mum

Hello, my name is Aria and I’m a struggling mum. I’m hoping that somebody can help me, maybe tell me I’m being crazy, or tell me that my story is similar to how yours started. 

My daughter is 18 months old (which I know is incredibly young, please stick with me). From pregnancy I knew something wasn’t right and it’s stuck with me since the day she was born, this feeling that I know she’s different. As time has gone on we’ve seen how different she is to her older sisters. I’ve always been very aware of her differences but more recently friends have started to comment on it, grandparents have commented and even my partner (her father) is also starting to say something isn’t right - which is huge for him to admit something isn’t right. 

My mum is autistic and also two of her cousins, but it’s still totally new to me. My mum doesn’t discuss it and has only recently started to tell me about the way she sees the world and the things she struggles with. She was watching her the other day and she looked to me and said ‘they’re going to tell you she’s autistic’. 

It all started around 10 months when she had a review and wasn’t hitting any of the milestones. They said they’d get in touch to re-evaluate her two months later but I never heard again. Around 16 months I realised things hadn’t improved and she hadn’t changed much since her 1st birthday. She wasn’t walking, her balance was very bad, she had no words, and she had no understanding of anything we said. 

I spoke to the health visitors and they said she needed support and quite urgently. They did some questionnaires with me and her and she was so delayed in every area that they said they’re the scores they’d expect from a child with autism - this information was sent to me in an email and I was very shocked. I was told to contact my GP for more information. My GP is brilliant and did an urgent referral but the paediatrics team have only just started taking referrals due to Covid. She has an appointment in 3 weeks. 

She’s now 18 months and has started walking but is still not great at it. The reason I’m struggling is she can’t be touched, or comforted. If you touch her, she will have a meltdown and become hysterical, I’ve somehow worked out that during these meltdowns she likes to have my hand in front of her and she presses her face into it until she calms down. She still has no understanding of what we say, she can’t follow simple instructions (give it to mummy/daddy, can you get your ball, etc). Her sleep is and always has been horrendous. She had night feeds up until 14 months and since she dropped them she tends to go to sleep at around 1930, will be awake by 2030 until 2330, and then tosses and turns until 0530. She likes to be enclosed to sleep, we’ve tried her in different beds and even tried cosleeping but she HATES being in bed with us and we think she likes the sides on her cot. The best she’s ever slept was in a travel cot that didn’t have bars, each side was material and so she couldn’t see out and her sleep improved (this was a few nights ago so we’ve been looking at “filling in” her bars safely since). We tried to wean her at 6 months but every texture made her sick so we stopped and tried every 3-4 weeks. She could only eat completely puréed turkey and vegetables until around 13/14 months, anything else would make her instantly sick. After that she moved on to eating things such as rice and pasta which was great. She likes to throw her food on the floor and eats more off of the floor than off of her tray (our floor is as clean as it can be!). She flaps her hands throughout the day and it’s painful to watch. She flaps them so aggressively and it’s like she can’t stop once she starts and she ends up really distressed afterwards. She has no connection with her siblings and if they touch her or try to cuddle her she will go into a full meltdown. I don’t feel like she has a connection with anyone, but she will rest her head on me and her dad occasionally which is really amazing when it happens. She doesn’t play. She picks up a toy and walks with it to the dining room and then walks back without it, then will walk back and pick it up and bring it back, and over and over. She doesn’t point, she doesn’t share interest in things with us, she doesn’t look where we’re pointing and she very rarely responds to her name. When she was a baby she cried all of the time. It was the hardest thing I’ve gone through because she cried constantly and wouldn’t stop until the early hours of the morning when she would eventually pass out. Holding her as a baby made her crying even worse so we had to just lie next to her which was horrible. When we go somewhere she freezes, doesn’t move a muscle and just stares. She doesn’t smile back to people that interact with her in her pushchair, she doesn’t play with other children and she doesn’t seem to take interest in what’s around her, other than animals.

She loves the tv and will stare at it all day whether it’s on or off and she loves music, she dances away so happily. She’s beautiful and I love her so much, I just don’t know how to parent her and it’s getting both of us down.  

The main reasons I’m at breaking point are the lack of sleep, I’m so tired all of the time. I struggle because I don’t feel like we’re bonded. She’s very aggressive and hits, throws things and pulls hair and has started to be really awful to her siblings if they get too close to her. Her older siblings are the softest and most gentle children and they’re really struggling with wanting to cuddle her and then the fact she responds with violence. We’ve tried explaining she likes to show love in different ways but they’re 3 year old twins and so struggle to understand. 

I kind of want to feel like I’m not alone. I’ve been saying for a long time something isn’t right and everyone told me I was being overprotective and a worrying mum. Which I started to believe. It’s kind of frustrating that now everyone else is saying ‘wow she’s challenging isn’t she’. I’m pleased people are now seeing what I’m seeing but I’ve had so long of people making me thing I’m crazy. 

If you’ve read all of this, thank you so much. There are so many other things she does but I’ve tried to pick the key things. Aria x