Author: Patricia Culley

I'm the ringmaster of my own circus. Just trying to stay one step ahead of the monkeys.

With my Humanity Faltering….

We took a Mental Health Day, today!

Jude had climbed into bed with us, at some point last night. First thing this morning, He opened his eyes, looked at me and said, “I just can’t go today.”

Like I mentioned yesterday, we have a kids day camp this week. It’s fun. It’s amazing. It’s epic. It’s theme is “Power Up”. They do Fortnite dancing, and crafts and have snacks and an epic water day. It’s AWESOME!

And in the last two days, my kid has used up any and every bit of emotional and mental reserve.

So, I declared today a Mental Health Day and we did nothing taxing; and only things that we wanted to do.

I have pretty firm opinions on parenting. I don’t like to put up with any garbage or judgement from others. It makes me sick when I see children being treated as bad or devious or evil. I do understand that there are some children who have been so hurt that they need extraordinary help and support; but so many children are spoken to as if they aren’t real people.

Real people who have rights, deserve dignity and autonomy. Real people who deserve respect and kindness regardless of whether they are non-compliant, misbehaving or just young.

But for all of my opinions, I’m still human.

I grew up with old school thinking that disrespects children. Thinking that says that I’m the boss and if I’m just tougher or more authoritative or just force a child to do something that they will get over their issue. Their issue, that isn’t legitimate anyway. They’re probably just faking it, in the hopes of getting away with something.

I don’t believe that line of thinking for one second. And yet, within the stress and chaos and exhaustion of parenting high needs kids, there are times that my resolve falters. I question my moral compass. I question my parenting skills. I question my ability to know or think or believe anything.

In that space, I allow the worry, the questions and the self doubt to surround me, for a moment, before I shake them off. Those thoughts don’t fit on me. I can’t wear them with pride, courage or confidence

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I believe that children, innately, want to succeed and do well.

I believe that if a child is not succeeding and thriving; that is not because they are intentionally misbehaving. They are struggling.

I believe that children try to do their very best and if we feel that their best is some how “missing a mark” then we must step along side and support them, in ways that are meaningful to them.

I believe that behaviour is communication and as the adults, it’s our job to detect what they, the children, are struggling to put into words and to help them…..not judge, shame or criticize.

I believe that our children should run to us when faced with problems and not try to hide from us, out of shame and guilt. It’s our actions, words and reactions that reinforce those beliefs and actions.

So in this moment of humanity, when I question my ability to parent my child, to help him to be resilient, to help him find his strength and his voice, to help him find his way in this world knowing that he is valued and loved and capable…….I pause.

I remind myself of what I believe and why I believe it.

I remind myself that it’s okay to not be okay.

I remind myself that taking a Mental Health Day is a gift and not a punishment.

I remind myself that I’m teaching my children invaluable life lessons by honouring them, respecting them and teaching them to be in tune with their needs.

I remind myself that this season will not last forever.

With my humanity faltering, but my beliefs unwavering, I carry on; doing the best that I can, in this moment and knowing that it’s okay to not be okay.

It’s okay!

What Can You Recognize?

It’s Summer time and I have memories of VBS in the local churches in our community. I remember sweaty hot rooms and making macaroni art, singing songs and snacks! I remember memorizing verses for stars. I LOVED to win the stars. Not to compete against others but to see just how many I could get. Summer camps both short day camps and overnight camps were a highlight of my summers.

I just picked up my 9 year old from camp after he bolted. He just ran away.

Jude deals with Anxiety and Trauma from living with Siblings with Autism. Life can be very chaotic, unstable and uncertain.

He struggles with doing things that seem like they should be fun; normal “kid” things And as his parent, I feel like I’m constantly balancing accepting where he is at and encouraging him to stretch his wings. I’m constantly balancing his emotional and mental capabilities and trying to encourage growth without wearing him out completely.

As his parent, it’s exhausting. Either I’m doing activities with him (like Grade 3 or Summer Camp) which means that I don’t get anything else done. Or I’m trying to encourage him to participate, which often means I’m hanging around close by; still unable to take care of other responsibilities. Or we stay at home and avoid “outside activities” and I can usually get some of my responsibilities accomplished.

Sometimes, he needs the complete break so he can recharge……like an older rechargeable battery that can only hold so much charge and takes longer to absorb the charge. He wears out easier than typical kids and requires more time to recharge.

Going to a high energy camp with a LOT of kids is exhausting so why do we do it?

It gives him another opportunity to practise and grow and to see how much stronger he is compared to last year.

It’s also SO important to live in community. We were not created to be alone. And even though it may seem easier to do it alone, it’s not. Loneliness is soul crushing. We are built for love and acceptance and interaction.

So even though it’s hard and awkward and too often we feel judged by people who don’t understand or “get it”; we believe in the value of community and so we do our best to connect, in ways that are meaningful for us, and yet don’t overwhelm or wear down us down.

I held back tears when I picked my son up. Tears for how hard it is for him. Tears because I’m exhausted. Tears because of shame. Tears because of guilt.

I told him I was SO excited to see him. And we carry on with our day.

The next time you see a kid bolting, understand that there’s a good chance the child is panicking for some reason.

Realize that they need support, understanding and help.

Recognize that kids do well, when they can.

Recognize that behaviour is communication.

Recognize that when kids are in panic mode they are more likely to “act” than “speak” and it’s ups to us, as adults, to lend our calm and to not add chaos.

Recognize that you can be a part of the solution or you can add to the problem.

Recognize that the child and their parents, most likely, have limited emotional/mental/physical resources in reserve.

Recognize that you can be a life line in both the child’s and the parents life.

Recognize that Shame and Blame help NO ONE!

Recognize that “villages” and “community” are SO desperately needed.

You are Not Alone

I don’t know if it’s the loneliest road but being a parent of a special needs or disabled child is definitely a tough road to travel.

Gratuitous picture of Mac because why not….

I’m not talking about my child’s journey, at this exact moment. I’m talking about my journey as a parent of a disabled child…….multiple children to be exact.

I was talking with another parent this morning. It feels so dishonourable to admit that parenting a special needs child is hard because you are supposed to love and cherish and champion your children.

Which I do!

But I also spend a huge amount of energy advocating on their behalf. Unless you live this life, you really have no concept of what it’s like. This is one reason that I share so openly about our life; so that those who have no clue, can have some clue, if they want, about what it’s like to live with and parent disabled kids.

I also share so that other parents who are going through similar experiences can know that they are not alone. I know this because I have many parents share with me……..”I thought I was alone until I saw your post and then I realized that I’m not alone.”

Too often, we believe that we are the only ones going through this. And it’s not until someone is brave enough to say, “This is what I’m going through and it’s ugly and messy and beautiful and courageous all at the same time.” that we realize that others are on this journey with us and we are not alone.

And that is the beauty of community.

We all need community. We need to know that we are not alone. We need to know that others have walked the paths that we are walking. We need to know that others understand the exhaustion and the frustration and the pride that we feel for and with our children. We need someone to understand that we live within chaos and that there is still beauty within the chaos. That growth still happens within the chaos. That love grows within the chaos. That life continues within the chaos.

This is why I share. This is why I lay my soul open so others can draw strength and courage from the knowledge that they are not alone. That there is a connection within the loneliness and isolation of parenting special needs kids.

We all want to be loved and accepted, not in spite of who we are but because of who we are.

I see you.

I recognize you.

I validate you.

You are worthy of love and acceptance.

You are more than all you “do”.

You are doing your very best and that’s enough, even if it doesn’t feel like it.

YOU are NOT alone!