Doctor, doctor

Last Thursday we had an appointment to talk about Evie’s mental development. We were hoping to get some answers as to why she’s delayed. Why she does things differently, why she doesn’t do other things. In some ways she’s not where she should be. Especially with speech. We were wondering if it’s autism. It’d make sense right? It’s everywhere in our family, it would explain a lot, we thought.

Then we left her appointment (where she behaved angelically) with no answers and more questions. But the biggest question mark was the doctor (who was amazing) said she’s not totally convinced she is autistic. A bit of that is to do with her age, but a lot of it is because of how sociable she is.

It was so frustrating. I spent the next hour trying to relay all of the information and the next steps to her dad and my family, feeling like there was so much conversation had in the appointment but suddenly I couldn’t remember a damn thing. 

The doctor said she’s sending someone into Eve’s preschool to observe her. She will also possibly need further observation from the multidisciplinary team who will assess her in a nursery-type setting. (This may or may not happen though. I think it depends how far we get from the first observation from the child development nurse who will go to her nursery.) 

If it’s decided that she does not fit into the criteria of Autism Spectrum Disorder, we may need to start considering genetic testing. This is another long road. It’s daunting. It’s overwhelming. And we’re only at the start. 

Evie is my baby girl. She is so special, loving, friendly (unless you’re our cat getting too close to her chicken nuggets). But it’s hard to imagine her going to school in less than a year when she can’t even really say her name out loud. This breaks my heart. Her sister is already fretting about not being at the same school as her little sis. All you want is for your child to be okay. To not fall behind in the race of life and it’s scary to imagine it happening. We’re in such a limbo at the moment of not knowing where she falls in the “additional needs” category. Of course she’ll be okay, she’s an incredible little soul. But the question of “what’s going on” is racing around and around my mind every waking minute. If it’s genetic, what the hell is it? If it’s not autism, what the hell is it? 

And I’ll say it again: I wouldn’t change her for the world. 

She is exactly who she is supposed to be. She is perfectly Evie. She’s a happy little girl. She loves her mummy, her daddy, her sister. She (sometimes) loves her cats. She (sometimes) loves preschool. 

However, as a grown up, you see the world for the ugly colours it can be. You see the hardships of life. You’ve known the difficulties that one can face even at the best of times. You know how much the school systems and the NHS can unfortunately (sometimes) let you down and not provide the support you need. You know how easy it is to miss a step, or blink for 0.0284 seconds and fall behind. You have children with the ache and longing to prevent that from happening to them. You hear “as long as they’re happy and healthy” but it’s not commonly talked about as to what to do when they’re not both of those things. 

So we left the doctor’s office and I slowly absorbed the information I was given. My brain processed it more and more as the day went on. By the evening, I was frustrated and emotionally tired. 

I was no longer excited about possibly having plans the next day with my friend. I didn’t want to celebrate Taylor Swift’s new music and dance around a movie theatre anymore. Something that’s hard to find when you have kids who have “additional needs” (even if you don’t know what they are) is a babysitter who’s comfortable watching the child, even when said child is supposed to be asleep. It’s fair enough, but damn, it’s isolating as hell. My inner anxiety and stress were rising.  My stomach was cramping so hard it felt like my whole abdomen was about to explode. 

Then the thought loops started. I heard my mom’s voice clumsily saying “it’s a good thing Evie wasn’t your first child, you probably wouldn’t have wanted a second one”. I heard my brother saying “I’m not convinced she doesn’t understand” while she was throwing a tantrum about not wearing her swimming costume (because God forbid I try to get her to stay DRESSED!). I heard him saying in response to my joke that I’ll leave the kids with him and hit the road, that he’d “keep Summer but Evie, maybe not”. I heard my dad be nervous about babysitting Evie while I went for a job interview.

Nothing is worse than people not understanding. Nothing is worse than people making you feel like there’s something wrong with your child. Nothing is worse than the isolation you feel when you can’t commit to plans, because no one wants to help out, in case your three year is just… herself. Followed by the turmoil of guilt. How dare I feel resentful? How dare I complain? It could be so  much worse. What, I’m bummed because I can’t go out? Don’t be so selfish.

So you bail on your friends, you don’t commit just in case. You stay home. You let people down. You make them said and mad. 

The good thing is, in parenting, you’re guaranteed good moments too. The hardships of parenthood - even to a neurotypical child - come with their fair share of magic. And when you have a child who maybe is behind, the achievements feel that much more special. 

Tonight, at three years and ten months, Evie slept in her big girl bed for the first time. We have tried twice before and it has failed with me getting stressed, borderline crying and throwing her back into her cot. But today, we tried again. She fell asleep straight away. She didn’t get out of bed. We’ll see how the night goes but for now, this is a big, fat win. I’m proud of her. And her sister was awesome - she read her a story and helped me put her to bed. 

These tiny victories are the biggest blessings. So I don’t have answers, not yet anyway. In the meantime I will just continue to push the doctors and the preschool. I will continue to watch Evie shine every day in all the little things she does. Every new word she says, every new thing she tries, every friend she makes at preschool. Every funny quirk she has. She is Evie. I will also keep ensuring that my eldest knows how sparkly and wonderful she is too. Because she is, she glistens everyday. Her happy smile, every thing she learns at school. She’s awesome. 

I have awesome girls. For that, I’m thankful.

Shout out to the doctor: she spent time reading Evie’s history, her notes, she actually absorbed the information and knew exactly who was coming into the appointment. I wasn’t repeating myself over and over. She listened to my concerns, didn’t dismiss me and considered what I was saying like I was more than just an “anxious parent”. More medical professionals like this please.