This is a topic that we could chat about for years. Parenting is tricky. We know there is no manual. We know that every individual in this world has a varied make up and therefore their needs are different.
Through my own personal journey, as well as all my conversations with parents walking this journey these are some of the common comments that are heard:
“Everyone has challenging moments… so what’s the big deal? You are making it more than it needs to be”
“They are so odd”
“It’s ridiculous that you can’t invite the other people, you shouldn’t be controlled by your child. You are not teaching them anything”
“Why are you so over-sensitive?””
“If I had their child for two weeks, they would be fine!”
“You should just discipline your child- here are some strategies.”
“X and Y worked for my children – you are messing up your child.”
“Parents of today have no clue – they are too permissive. They pander to every whim of the child. Give the child a crack and they will tow the line.”
“We are all proud of our children. It is no different if yours has learned to read or when my child learned to read”’
It is the awkward looks and belittling comments that are so cutting and hurtful because the amount that goes into one day of holding these little people is so heavy and hard and takes up so much mental, physical and financial power. We judge ourselves for every move we make and are perpetually searching for how to do it better. What may be a new skill for one child may be something that another child has been working on for years. And they may or may not ever get there. The research, costs and careful handling at each and every moment has been carefully thought through to scaffold and facilitate forward movement. We don’t focus on the big goals always – sometimes it is the smallest thing that feels like the biggest win.
We hold onto every positive moment because we know that anything can happen next. I will never forget the first time our family was able to sit through a meal at a restaurant. My husband and I looked at each other with tears in our eyes marvelling at this huge moment. This is one example of a typical experience that is so “normal” for families, but for us was a massive win!
The unpredictability of walking the path with children with extra layers is gruelling and the worry for the future is more than words can describe. We often feel very alone. So, while we are walking along this tight-rope that sometimes feels like someone else is shaking from the ends, what do we need from our loved ones, friends and the outside world?
I admire Maude Le Roux so much. She is an Occupational Therapist in America. I have attended many of her courses and one of the first things I learned from her and have never forgotten is:
“If they could, they would!”
No person has ever chosen to fail. No person wakes up in the morning saying to themselves: I am going to do my best to mess up today.
Every person everywhere wants to achieve, be accepted and loved.
That goes for our children as well as for us!
It is possible that the child and family are working on a particular goal at the moment. This may mean that certain other demands or behaviours are put on pause so that the child can focus and achieve success at the targeted aim. This may look like permissive parenting to the outside world. Unless you have a deep and full understanding of the situation, please do not judge. Chances are that this parent has probably tried the very things that worked for you or if they were to try them, their child would push back, give up and move 10 steps backwards. There is not one action or decision that is made without careful thought with our kiddies with extra layers.
So what are some ideas of what is helpful?:
- Don’t stare, don’t judge. If you see a meltdown in a shop – give the mom/dad a smile or wink to say “it’s ok, we are sorry for this moment” or “we’ve been there, you are not alone”. If the parent has another child, perhaps you can keep that child occupied nearby to give the mom/dad a moment to help their child who is melting down support in order to regulate.
- Be a SAFE person. Be that person where the parents know that their child is accepted for who they are and whatever they bring. Offer to come be with the child or have the child at your place so the parents can have 2 hours “adult time”. However, is not helpful being with the child and then giving a list of all the things the child did wrong when the parents come home. The parents have to deal with the challenges 24/7 so please find a way to manage for the 2 hours so that they can have some very needed respite. Finding someone they trust enough to leave their child with is hard enough, finding someone their child will stay with is quite another. This is a tough journey and it is not possible to do it alone.
- Traditional discipline does not work! Each and every child has different needs and it is important to gain a good understanding of what works for that particular child. Sending them into a stressed state where they go into fight or flight or freeze or fawn response is not helpful to anyone.
- Tell the parents who and how many people will be joining for a social plan so they can figure out if it will be manageable for their child. Do not take offence if they decline. Don’t stop inviting or making plans, even if they keep saying no or cancelling. One minute it may look possible and the next it may change suddenly for the family.
- Be open to changing the plans last minute. Perhaps going to their house may be what their family can manage rather than going to a restaurant. Focus on the time together rather than the event.
- Help your own children learn strategies of acceptance and model and guide them as to how to include and make the child with extra layers feel welcome. So much attention is placed on the child with the extra layers to conform rather than for the neurotypical children to learn new skills of how to accept and be open to the beautiful new view they may gain.
- Ask what foods their child eats and go the extra mile so that they can come and relax and know that their child will eat something.
- Give them space to talk and truly listen. They may say the same thing over and over, but they need support. Listen for the sake of listening and not responding. If the parent wants tips, they will ask. If they share details about diagnoses or findings, be open to learning new things and don’t put your ideas onto them. Perhaps it is out of your realm of belief or understanding, but it does not change their reality.
- Ask! What can I do to be helpful? What do I do that feels unsupportive?
Let’s increase our tolerance, reduce our judgement.
No-one knows where someone has come from and what they are dealing with.
A smile and an open attitude to embracing difference goes a long way!
