The Cynic V The Anxious Wreck: a war story

From the day Wade was born, I have been waging an internal war about how to manage the competing feelings of wanting to do the best for him, yet not wanting to get sucked in to the heaving pile of guilt-laden extra “stuff” that society makes you feel utterly compelled to do for your child, whether they need it or not.

In the past, I have struggled with anxiety. Snowballing worries and being paralysed by indecision usually topped the list of how it manifested. The great paradoxical irony being that, before I met Mick and had Wade, the consequences of bad decisions were fairly minimal but the anxiety levels were pretty high. There was only me to worry about yet I found it extremely hard to move forward when there was no clear path or there were too many pros and cons to manage. Now, even though there is much more at stake, I find it much easier to manage the anxiety and make clear decisions. The turning point for me came well before Wade though, at the police academy, where I learned that when faced with an unfamiliar situation, you have to make a decision and do SOMETHING. Walking away is not an option because when you are standing there in the blue uniform, everyone is looking to you to fix the problem and even though you might not know the absolute best course of action to take, you have to back yourself and pick one.

It was the greatest lesson I ever learned.

(Saying that… I also learned that it’s a long road from break-through moment to complete salvation and no job was worth losing my health over, so I resigned before I was buried under an exponentially growing pile of paperwork.)

Since becoming a mother, walking away really is not an option. There is no Senior Sergeant to hand a resignation letter to. No hook to be let off and no “Get out of Jail Free” card and, to my complete surprise, that makes managing anxiety easier. Mick is an amazing husband and father. He plays an active role in Wade’s development and I absolutely turn to him for his advice and opinions but I am Wade’s full time carer and I can’t help feeling full responsibility for every aspect of his well being. The decisions I make have a direct impact on his health and development. I cannot afford to be paralysed by indecision. I have to make a decision and it has to be good. I can’t let the worries snowball anymore because it takes up too much valuable real estate in my mind and I need the brain space to get on with my day, to be there for Wade.

Becoming a parent who also has access to the Internet, has opened up a Pandora’s box of infinite techniques, methods, pills, powders, tools, exercises, services, products, etc, etc all designed to make my life easier, my kid smarter or safer or stronger, to “fix” or “cure” or manage Down Syndrome. The Internet is also a great place to find any piece of “factual” information to support whatever notion happens to be filling your head at the time.

The fact is, some of these things are life-saving pearls of wisdom that have a direct and measurable impact on Wade’s development and my sanity. But some of these things are at best, a pointless waste of time and money and at worst, lowly attempts to prey on desperate parents with false promises of “miracle cures”. The problem is….I’m not an expert and, at first blush, it’s impossible to tell the difference between the two. This is a perfect breeding ground for anxiety yet, (and no one is more surprised by this than me, let me tell you!) I am getting better and better at wading through the contradictory opinions and making a decision about what is right for us.

I want to be educated and open to new ideas and be willing to learn new things but I also hate unnecessary interventions. Walk into any baby store and you’ll see rows and rows of products and devices all screaming at you that you absolutely positively MUST have this or else!! My gut reaction to all this was…I don’t need half of this crap. I don’t need a bottle steriliser, I own a saucepan. I don’t need a computerised underblanket that measures heartbeat/ temperature/ breathing/ how many minutes remain till the nappy needs changing with a live feed to my mobile phone showing graphics on how many millimetres my child grew that night….

Ok….. I made the last bit up but you get my drift. I approached parenting with the philosophy that women have been mothers for a very long time…even before electricity!! Surely some basic common sense will fix most of the problems I am likely to face.

I tried to apply the same approach to dealing with the disability side of things as well. I know that Wade has a developmental delay that will result in an intellectual disability of some degree in the future. I want to do everything I can to help him with this but if he is progressing well and doing new things all the time, I’m sure I don’t need to turn myself inside out over some new product or device that will maximise his potential. I also want to raise him how I always intended to raise my kids whether they have DS or not. I intend to set the bar really high with my kids, to expect good behaviour and to presume that they are capable of anything. I will pull back those expectations when it becomes obvious that certain goals are not possible but not before. I want him to shock me daily by what he can do rather than be on the look out for all the things he can’t. Those intentions require me to think of Wade as a capable person who has the potential to understand many, many things and not as a child that is broken and needs fixing.

I am always asking questions and I don’t always believe what I am told until I have looked into it myself. So being a cynic with anxious tendencies can be a delicate balancing act. I go through stages where I feel like I will drown under the pile of things I should be doing for my child then times of thinking that Wade is developing steadily and happily, doing new things all the time and surprising me every day. The fact that I HAVE to decide the worthiness of each new thing that comes my way has reigned in my anxiety levels. It forces me to stop and think about the merits and drawbacks of each product or technique, and these days, I am becoming more effective at working out what could be helpful and what is completely unnecessary overkill.

Therefore, in order to hold back the tide of Absolutely Necessary Things You Must Do For Your Child and He Will Never Achieve Anything Unless You Buy THIS Product, I have tried to apply another handy principle I learnt at the academy. The K.I.S.S. principle which stands for Keep It Simple, Stupid.
I intend to use basic simple methods to teach Wade new things that are rooted in common sense. If, after trying to show him how to do something in a variety ways, he needs more help, then I will think about more specialised equipment. For example, Wade accidentally had a tremendous therapy session today while I was putting on my make up. He sat on the bathroom floor and raided the toilet roll bucket.
He pulled each one out of the bucket and threw them around the floor. (Discovery, Fine Motor Skills).
I told them what they are called, (Language development with Visual cues)
He then picked one up and sucked on it, (Sensory play),
I kicked one with my foot across the floor and he crawled after it, (Cause and Effect, Gross Motor Skills)
He then changed his mind and went back to the empty bucket, (Expression of Choice)
He picket up the bucket and tapped it on the ground and tapped on the base, (Musical Therapy)
He then changed his mind again and pulled to stand at the toilet and tried to suck the seat even though I have told him a million times it is disgusting, (How to push Boundaries with Mummy so that she gets Frustrated and Annoyed which is also known as Hilarious Entertainment for Wade)

To be clear, I do use government services and I think they are a valuable addition to his development. My Early Intervention worker comes once a fortnight and we discuss what extra help he needs and what methods I can use to achieve that but they are usually an extension of what we already do around the home. I still find it valuable to do some reading about developmental principles, how children learn and familiarise myself with common hindrances to learning but in order to reduce the crazy mother guilt of never being able to do enough for Wade, I have decided that if the basic, common sense methods are working and he is making progress, then that’s great. If he isn’t making progress in an area and nothing I try seems to be working THEN I will start looking for a more advanced or complicated system.

I still have my moments when the wheels fall off but being a mother means I have to find a solution to the problem and get on with it, not dwell on it. I have to get right back in there so that I can do things like showing Wade that singing Janis Joplin covers in the kitchen is a good way to spend an afternoon.


5 thoughts on “The Cynic V The Anxious Wreck: a war story

  1. You are absolutely right to use KISS. Wade is a child first and he is exploring the world and learning about new things all the time. Even sucking on the toilet seat is great for building up his immune system, same as any other kid would do! Glad you’re cutting yourself a break from all the craziness.

  2. Sounds like a bloody fabulous philosophy to me. It’s all very easy to get caught up in what development techniques we ‘should’ be following, but I also want to raise well-rounded, happy, resilient young men (all of them) in a happy, calm family, so hanging out together at home, dancing in the kitchen and doing puzzles on the floor is just as important to me as the official therapy. Darn that mother guilt we’re all so familiar with though! The guilt manages to sneak in occasionally, regardless of what we do, but you’re right – good to make a decision and own it, and we can always adjust as necessary along the way x

  3. Great Post! I totally agree. There is so much to be learned from every day life. Sometimes I wish my kids weren’t at school so long every day because they learn so much from just being with us, conversations, observations etc. Though I do wish I could have more therapy for our son. I think a good mix is needed. I like the therapy because therapists often pick up on things that we haven’t realised needed attention.

  4. Pingback: What’s worked for my son with Down syndrome…road safety. | Embracing Wade

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