My daughter like me wants to be understood but gets frustrated when her needs aren’t met. You would think with both of us being on the spectrum it would be easier to understand her needs. Although I can recognise her behaviour as similar to mine, it’s also frustrating because she has a speech delay and communicates through gestures. As Kyrie of @transformedhomemakerssociety said focusing on your purpose as a mother will reduce your inclination to be annoyed with them. Here’s the video for reference.
The reality of having a neurodivergent child
A month ago I felt like I was punched in the gut. That afternoon we had a meeting at my daughter’s nursery to discuss their concerns about her behaviour. They were concerned about their ability to look after her safely. Her inability to follow instructions, lack of interaction with other children and endangering herself. My aforementioned gut punch was the stark reminder of being excluded from nursery 36 years prior due to my behaviour.
My neurotypical husband is much better at understanding our neurodivergent daughter than I am. This is why I often go to him for confirmation and copy his techniques to understand her better.
The beauty of embracing our daughter’s neurodivergence
We have also been implementing advice from the SEN social worker regarding social interactions, speech and eating habits. We are pleased to say that her speech is gradually improving, her social interaction is increasing and her PICA has decreased significantly. Our daughter’s nursery reports have improved from we have 50% confidence in preventing her from endangering herself to over 75%.
We are considering hiring a private nanny for our two children. I am also aware that we are privileged enough to be able to do that. We are also now relieved that the nursery’s confidence has grown in their ability to look after their behaviour. Like myself, she’s already having to prove others wrong.
My Journey
As mentioned, on my introduction page I got diagnosed with autistic traits aged 4. I was diagnosed before Asperger’s existed. I was recently told by a late diagnosed neurodivergent person that you can have autistic traits without being autistic. I find this approach problematic as it dismisses the emotional experiences of those higher functioning individuals like myself.
On the outside, I’ve made it by neurotypical standards: a fantastic husband and children, lovely house and career. What the outside world does not see is the decades of crippling anxiety, sitting alone in the playground and classroom, not eating during stressful periods, misinterpreting exam questions and social interactions. In addition, it took until my late twenties to find my feet in my career.
In addition, the impact it had on my parents and my sister is overlooked. My parents fought tirelessly to help us girls. My mum with my autism diagnosis, getting speech therapy for my speech delay. My dad with my diet to help regulate me.
My sister was the one who unintentionally got missed out. She didn’t get private nursery due to financial constraints even though she was better suited to that environment. She also tagged along to my SEND activities. In addition, she felt she had to be my caretaker despite being 21 months younger until I was an adult. On holidays I hung out with her and her friends.
My daughters share the same age gap and birth months as my sister and I. My youngest did not experience baby swim lessons like my oldest and also tagged along to my first SEND event recently. I now understand what my parents meant and also carry the same guilt about balancing the needs of each child so that they are both affirmed.
Eldest Daughter
Lookswise, my eldest daughter is her dad’s doppelgänger. However, she has many personality traits in common with me. She loves routine, counting, being outside and singing nursery rhymes.
She gets frustrated when her needs aren’t met, has PICA and climbs on things she shouldn’t. She recently broke her cot bed frame due to jumping vigorously on it for a month.
Motherhood
Becoming a mother caused my mask to fall off. I became burnt out from attending 4 mum and baby groups per week. Add slimming down into a bridesmaids dress for your sister’s wedding and adjusting to making your relationship after becoming a mother was a recipe for disaster. Although I had a family of my own, I was still stuck in the trap of pleasing my immediate family.
On my second maternity leave, I realised that being a better mother means admitting your limitations. That way you’ll be able to seek and rely on those better placed to help you. In my experience as an autistic mother with one aspie daughter, it is even more difficult for me to always correctly read her cues. I’ve had to rely on my amazing neurotypical husband to assist.
My eldest daughter’s cues change quickly. For instance, I’m so used to her wanting to go outside (weather permitting) after eating breakfast that my aspie brain will get her out of the chair and ready to go outside. I put her outside and she ran back inside within 30 seconds. I’ve learnt to be more permissive with her needs because as my husband says when I’m regulated, the children are also regulated.
My youngest daughter is quite sociable and I’m also now in a place where I can attend a mum and baby group once in a while. I feel constant guilt about not being able to socialise as much as she would like. But I remind myself of the wise advice I received that “as long as my daughter is happy that is all that matters and not to worry about what everyone else is doing.” Although my youngest loves her sister to bits, her needs are just as important which is why each of us parents do activities with each child individually.
Relationship
My other half is neurotypical. He often describes our relationship as two people understanding two different languages. He’s written a book on the subject called Maintenance Mode [insert hyperlink here].
We were fortunate enough to fall pregnant with our first child after four months of dating so we’ve gone through what most couples experience in a decade in three years. Although I knew how to live as a single woman, I’ve also had to simultaneously adjust to living with someone else.
Our first daughter was born almost 13 months after our first date. I threw myself into the mum and baby groups where I was comparing myself to other couples. However, I still held onto my old habit of venting about my entire life to my mum and aunt. Instead of following the Holy Spirit’s prompting to vent to him first, I was acting in the flesh.
This venting almost destroyed my relationship with the man I waited 36 years to meet. Combine that with his stressful job situation and a new baby. He also felt disconnected from me.
We started to recover our relationship when our daughter turned 6 months. We took advice from other married couples and started having date nights again. This time around, I vent to god first, people please much less and my life has become more peaceful. We now have at least one date night a month and recognise each other’s strengths in household. He reads the children’s emotional cues and feeds us via shopping and I do the practical stuff like cooking and cleaning.
Final thoughts
As a mother I am the heartbeat of my household. This is why it is important to regulate myself. This makes me a better wife and better placed to respond to the needs of each child. Life really is a journey and it does get better.