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Dealing with how hard it is ……… to parent a child with uniquely wired brain

A mother wrote me recently sharing her pain, fears, and frustrations. She told me that the hardest thing for her was dealing with all the expectations that she had that seemed to become impossible, whether it was small things like plans for the day, or big things like hopes and dreams for her child. She talked about the cycle of grieving for the life she hoped her child would have, guilt for feeling that grief, and fear that she ‘s never see the light at the end of the tunnel.

The first thing I told was “ You are right”

The first things I tell parents are,

“You are allowed to grieve the loss of the child and the life you thought you were going to have before you can celebrate and honour the amazing child in front of you.”

“It’s not just you: it’s hard for everyone”

Days are not always going to be easy at the beginning it will be a process to finding what works for your son or daughter. To get there you need to be taking care of yourself because who else is going to give your child the kind of attention you do? It’s a marathon, not a sprint. You need your energy (and sanity) for tomorrow.

The Steps

Every Parent I know has gone through these steps, not necessarily in this order, much like the stages of grief.

  • Disbelief – This is not happening, my child is fine.
  • Blaming – themselves, others, vaccination, any number of things
  • What did I do to deserve this?
  • How will I ever get through this ? (one hour, one day at a time)
  • Magical fixes – I got this… We will do this and this……. and my son/ daughter will be “normal”.
  • Acceptance that their child will not fit into societies box of “normal.”
  • Reality – Acceptance of what you current reality looks like and hope that there will be better days to come
  • Reaching out – Starting to share your struggles, realize they don’t have to do this alone and ask for support from their friends, family, community and experts
  • Celebrating progress – They finally see the progress their child is making
  • Making peace with the unknown and really asking for the help they need to keep themselves energized and fulfilled.

My Friend hit some really great points about expectations, for your child, and for yourself as a parent. You can’t beat yourself up over losing your temper or not being as compassionate as you maybe could have been to your child. You are human, we are all doing the best we can with what we have in that moment. Even in one of my videos I refer to feeling I was “ knocking my head against the wall trying to figure out what to do” while trying to help a little one with ADHD to focus on the sounds the letters make. I openly admit I get frustrated too!

My Friend really nailed it when she said “it requires awesome grounding, community care and community and peer support” to get through some of the tough days, weeks and months. It takes great “discipline” to make sure you are making self care a priority so you can “show up with grace, compassion and empathy for yourselves and your child”. So never forget that you are not in this alone, seek help from experts, family, and Respite care. Also check out some of the self care blog posts such as:

Emotional and Spiritual health

Physical health

Cultivating meaningful relationships 

Time management

Setting boundaries 

Nutrition for stressful situations

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