Let’s start with some questions. When everything feels so heavy, I like to explore what I’m feeling with questions. I’m not searching for answers, but looking at my questions can give me a sense of what my feelings behind them might be.

What questions do you have at each stage of this process?

Are they ‘why’ questions? Or where to from here questions? Are they actionable questions, or maybe questions that leave you running in circles?

I remember having so many questions and not many answers.

Why does my child have a “limiting” diagnosis? Why does it have to be so hard for him? Why is it so hard for us? Why can’t I support him in the way he needs? How do I take this weight off his shoulders? How do I take this weight off my shoulders? Why didn’t we see this sooner? How is this going to impact his daily life? How will this impact his adult life? Do I force him to go to school? What about ‘me’ time? What about my job? Why can’t the school do more? Why does it take so long to get an appointment? Why can’t I fix this? When he needs connection, why am I pushing him away? Will a diagnosis change anything?

This all just feels too much! Because sometimes it is too much. So, let’s talk about what is going on with our feelings beneath the surface. 

What are you feeling right now? Take a moment to pause and feel it. Want a hug? Wrap your arms around yourself and hug it out. 

When it’s hard- it is SOOOOOOOO hard!!!!

When your child receives a diagnosis what might you feel?

Anything and everything, and that is all normal. Maybe you feel shocked by this and didn’t see it coming. Maybe you have feelings of denial, or frustration for your child or towards yourself or your child. Perhaps you are feeling deep sadness for your child and what their future might look like. It could be that you feel deep anger at the ‘system’ that has been letting him down for so long. Or maybe you feel a sense of relief as pieces of the puzzle fall into place and begin to make sense. You might have hopes and dreams for this child and ideas of what a ‘typical’ life looks like. Maybe you are feeling grief. Grieving these ideas can be part of this process.

We want to make room for the life that is standing right in front of you, and we want to accept that we have little control of what our child’s journey will ultimately look like and make room for this reality- their reality.

More on the feelings you might be experiencing and how to process them.

What feelings might your child be experiencing?

Your child might feel as though he is failing at life, isolated, not part of the family, not part of friendship groups, constantly getting in trouble, but not understanding why or what led to the punishment- and not knowing how to make things right. He may seem sad, or lazy, or give you a sense that he has given up on himself.

Here are some examples of what kids might say:

“I am an idiot”

“I’m a failure, I can’t do anything right”

“Why am I making it so hard for our family”

“Why can’t I just be normal”

“I hate myself”

“Everybody hates being with me”

“I’m a loser and I can’t do anything right”

 “Why is my brain broken?”

“Why is my brain holding me back?”

“I wish I didn’t have X, it makes learning so hard for me”

“because of my [diagnosis] it is so hard for me to concentrate/finish my work on time”

These are real examples of what children have said.

In the first few examples, we see that the child is attributing his whole sense of self to the challenges in his life. In the last few examples, we see that the child is able to separate their inherent sense of self from their diagnosis. This is where we want to get to - a place where a child understands that they have challenges and opportunities, that sometimes they succeed and sometimes things are harder, but that is not their fault and that we are on their team and here to help them.

Personal Experiences- 

I was always crying. Every time we had another meeting,  and I shared that that my sons beautiful and radiant light felt like it was being extinguished, it was with deep sadness.

I was mad and then I was sad and then I was hopeful and then I was mad again and then I felt overwhelmed and anxious, and then I needed time to feel depressed. I was being triggered by my child’s behaviours and we got caught up in a ‘dance’ (relational dynamic) that wasn’t serving either of us. In this video we delve into this more.

I remember wanting to go to an event, I was excited and ready to go. Half an hour before Sam didn’t get something that he had wanted. I spent the half an hour holding him down to keep himself and others out of harm’s way. I did eventually leave (with him still feeling very upset and dysregulated) and for the duration of the event I sat at the back crying and then walked back home with others whilst still crying. What was happening for our family was a lot and it really did feel like it was too much at times. I was losing a sense of myself through this experience, and putting aside my  basic needs as the needs of my child consumed all my capacity. 

There was a time when Sam was 3-4 years old, and I would call out an emotion, like ‘jealousy’ and he would reply with an example of what made him feel jealous, or ‘excited’ or ‘happy’ or ‘safe’, and I remember thinking that he has emotional intelligence that would put him in good stead. Fast forward a few years and all day, every day at school he was feeling like an idiot, he would scream out to the class "I’m an idiot” and all the children would reply "yes you are".

He was constantly and consistently “failing”. In his eyes he was not living up to what was expected of him. And he got to the point where he couldn’t trust his instinct as it wasn’t serving him. No matter how hard he tried, he was unsuccessful.

When we first heard of my son’s diagnosis, waves of guilt and sadness washed over me. I didn’t know how to share the information or who I wanted to share it with. Was I prepared for their reactions (my child, his grandparents, siblings, teachers, my friends)? I needed time and so did my husband. And so, we took the time that we needed. We had many discussions and found resources to help us share the news with our son and his siblings.

When my son would first have dangerous outburst, we would hold him down, to prevent him from hurting himself or anybody else. His occupational therapist taught us how to safely hold him out of harm’s way. Months later, my son was recording a video for himself about feelings, and he shared some examples of what is helpful when feeling angry. He shared how we used to hold him down, and that it was not comfortable for him at all. This led us to have conversations about better ways that we can support him through that state.

Sometimes the feelings we have feel more complicated and tangled up with shame and they might feel more stuck and more difficult to shift.

Let’s face them head on. Let’s play a game- the blame game. Who wins, Compassion or Guilt? I know who I’m rooting for.

You may be feeling guilty that you didn't support your child in the way that they needed. Guilt in how you reacted time and time again. Guilt in how your other children were recipients of outbursts and you couldn’t prevent them all. Guilt in how you pushed him in ways that weren’t supportive for him. Guilt in that you didn’t stop others from shutting him down. And the list goes on.

Feelings of guilt are okay, when they are productive. If you make mistakes, it’s good to feel bad about them and then apologise and try and do things differently in the future. (click here to learn the differences between guilt and shame).

When feelings of guilt come to visit, repeat after me-

“Neurodivergence is nobodies’ fault. This is not an indicator of how I parent. With support and education, I will understand how my child’s brain works. This stage will pass. I am doing the best I can with the resources that I have, and I am rocking it. We have faced hard things before, and we have overcome them. This will be another win under our belt.  Thank you for visiting guilt. We can chat more later, but now it is now time to leave.” (to learn more about feelings as visitors check out this video).

What is the take home message when it comes to feelings through this process?

They are here to stay.

The deep feelings that come throughout this process will always be there. You may get through this process, breathe a deep sigh of relief and be proud of your child and yourself. There will be times in the future when you feel that your child is needing some more support. It may bring up intense feelings that were present throughout the process and that is okay and normal. Always remember though, that you have grown and shifted and changed since then, you have more tools in your toolbox and hopefully resources and support systems in place. Pick up the phone and reach out to one of them. You were never meant to do this alone. Don’t be afraid of the big feelings when they come, they have come for a reason. Sometimes they are overreacting, and sometimes they are alerting you to the fact that your child seems to be struggling in a bigger way again- trust your gut.

Personal Experience-

There are times, years after the diagnosis when I leave a meeting feeling disappointed, as though my child was unseen, or misrepresented by all the adults in the room and it leaves me feeling frustrated and angry. It all bubbles up and the Mumma Bear claws come out ready to attack. In these times I give myself space to feel it all, call a friend or team member, go for a run or have a dance, scream into the ocean or draw it out. Once I feel centred then I shift modes to think about what changes need to be made.

Personal Experience-

The other day by son was making a milkshake in the kitchen, he then ran out to catch the bus. A few hours later I came home to see the once frozen fruit now defrosted in a container that had a big crack in it with liquid dripping from it off the counter in a pool on the floor, his drink on the table, the freezer left ajar. I happened to be in a good mood, and as I ran to grab a towel, the thoughts going through my head were “wow, he must have been in a rush, this is how his mind functions sometimes, that can be really difficult for him”. When he came home, I described what had happened and we looked at solutions for next time- but rather than coming from a place of anger and frustration, I came with a sense of compassion for him and his experience.

When the going gets tough, and the road seems treacherous and endless, repeat after me: “I have a 100% success rate for getting through each day”. Yes, some are harder than others, but I somehow managed to wake up to another day that I am ready to face with all that it brings.”

To be honest, this article was difficult for me to write. I wanted to share so many different ideas about feelings through this process, and I wanted to make sure that I was giving tools to help YOU! I didn't want to minimize the challenges that we, as human beings face in relationships and I felt that in order to do that, I needed to share deep ideas about relationships. But then I felt that I was going off topic so I created three short videos about Relationships that may whet your appetite to want to learn more, and help strenghten your awareness. You can find them below. 

Here are some articles that can guide you through telling your child about their neurodiverse diagnosis:

How to tell your child they're neurodivergent

How do I tell my child about their diagnosis