Under a Microscope: Parenting a Child with Complex Needs [guest post]

As we know, one size doesn’t fit all when it comes to our children. Parenting Perspectives is a blog series which aims to share posts from other parents that take an alternative view to “traditional” parenting, whether by choice or not.

 

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This week, Miriam from http://www.faithmummy.wordpress.com/ shares her experience of parenting a child with complex needs. Read how she is under a microscope with society, family and professionals.

Parenting is one of those incredible experiences that no matter how many people tell you about it, it really has to be experienced for yourself.

I was so excited when I finally found out I was pregnant after ten years of trying. I had experienced so many disappointments, so many negative pregnancy tests, so many medical tests and several miscarriages. Then, finally, IVF treatment.

At an early scan to ensure the treatment was on track, I found out I was having twins. That was when I had my first experience of parenting under the microscope because suddenly my pregnancy became the talk of medical doctors and midwives. Even the general public suddenly wanted to know all about my pregnancy because it was ‘different’.

Initially, being different is great. Having that little bit extra attention paid to you, having extra accommodations made and having lots of people involved sounds great at first. Little did I know this would last way beyond my days of being pregnant. 9 years on and society pays me far more attention. I need extra accommodations made for my children and I have a huge amount of people involved in my life and the lives of my children.

I am parenting under the microscope.

Why is that? Well my son, who was born healthy, was diagnosed with severe autism at 3; Neurofibromatosis type 1 at 4; and a brain tumour at 8. He can not speak, still wears nappies and is visually impaired.

Even if a hundred people had told me what it was like parenting a child with complex needs, I would never have understood until I lived it.

So how is parenting for me like being under a microscope?

Firstly, society has me under a microscope:

My son is loud, screams a lot, flaps and shakes and has public meltdowns daily. Sometimes, for his own safety, I put him in a wheelchair even though he can walk. That is hard for the general public to understand. He eats with his fingers which, at 9 years old,  is considered socially inappropriate. He ignores other children and does not reply when anyone talks to him (he can not speak).

There is still an assumption with people that my child must be developmentally delayed due to neglect or poor parenting. Others feel that I do not have control over my child. Some see him hitting or pinching me and make assumptions that he is not being disciplined. Having a child with disabilities seems to mean parenting them becomes a public affair for everyone to have a say in.

That is hard.

Secondly, family have me under a microscope:

My son will not be the picture page boy. Nor will he wear your lovely hand made woollen jumper to be photographed for a canvas picture for your wall. He won’t even so much as look at the camera! In fact, if we come to your house he may want to flush your toilet continually, sit on your windowsill or lick your ornaments!

Weddings, christenings, family gatherings and birthday parties are never going to go well when I bring him along and sadly, family find that hard to grasp. It is so hard for them to admit their own relative has special needs and attends a school for complex children. He is never going to be performing at a concert or dancing on stage. University is not on his radar. He will require 24-hour care all his life and we won’t be planning his wedding either.

That is hard.

Thirdly, professionals have me under a microscope:

One of the hardest things about parenting a child with complex developmental and physical needs is that I can not do it alone. I could not even chose my own child’s school and getting a babysitter for a night out is never going to happen.

In order for my child to have any quality of life at all, I need nurses, social workers, therapists and teachers to work very closely with me at all times. I have to attend meetings where everyone has to know so much about my child AND home life. I lose privacy daily when people come to my house to see how I wash my son, how I dress him and what size nappies I use. Instead of an odd babysitter, I had to bear my soul to arrange respite and everyone had to know everything about me just to have a night without my child. Nothing is private when your child is disabled. I have had to get used to my every move being monitored and scrutinised by people who may only be involved with my child for twelve weeks of his life.

That is hard.

I love being a parent. I love my son more than words can even describe. Every day is fun, exciting, challenging, exhausting and full of life. But every day I live life with him under a microscope because of his disabilities.

Parenting a child with complex needs is a very different experience of parenting that very few understand.

To find out more about my life and parenting Isaac and his sister, Naomi, please follow www.faithmummy.wordpress.com

You can also find Miriam on Twitter and Facebook

If you want to read more Parenting Perspectives posts then visit our Parenting Perspectives page.