Friday, 3 July 2015

A balancing act

Today I wanted to write about beginning to regain some time for myself in the process of raising children.  Child raising melded with slow living and all that it involves.  You see lately I've been finding snatches of time to pursue my interests. Things beyond simple living. Things that are not about responsibility but about me!   Something I couldn't even imagine a short time back.
However, whilst planning my words in my head, I realised that I can't simply write about the process, without making this a post about disability.  That is due to the intensity of the recent years behind us.

Many families which include children with Down syndrome make the decision to treat their family primarily as a family first and foremost.  There is so much merit in this and we tried very hard to just be us and enjoy growing with our children.  After all, kids with Down syndrome are just like other family members in their contributions and relationships.

Buddy played with his sisters, annoyed them deliberately just like any other brother, developed skills in a similar order (albeit somewhat slower in many areas), and brought the same feelings of pride and joy as he learned to walk, speak, tidy his toys etc.
However, unlike some of the families I have known who are also travelling our path, we have been HUGELY concerned with getting enough therapy for our son.  I would have liked therapy most days if I had been able to access it.

This placed a lot of pressure on our family.  Locally, therapy in the form of speech pathology, occupational therapy or physiotherapy was only available once a month.  I didn't feel that amount of intervention was going to help my son so we made the decision to travel to access twice weekly therapy.  It placed a huge burden on our family and changed all the children's formative years.
I can't begin to tell you the effect this battle had on me.  I didn't cope well with accepting that I wasn't able to access help locally.  I felt no one cared.  I felt alone and disillusioned with our society to know that a parent wanting to use formal therapy was unable to get help.  I felt let down and very bitter that I had to fight so hard to find the right teaching methods for my son.  I was incredibly forceful in demanding the help I wanted.  It went against the grain to be so persistent and I was left feeling that the service providers must think I was a horrible person.  Still, I had no experience with disability and wanted to benefit from all the experience and effective strategies that had come before us.  I didn't want to reinvent the wheel.

I think I aged overnight and my personality changed.  I wasn't carefree anymore, didn't laugh often or easily, and was burnt out.  But it was NEVER Buddy's syndrome that brought me undone.  It was the lack of support.
No wonder families decide therapy is not the be all and end all!  Others were happily living their lives with their gorgeous children while I was stressed and banging my head very hard against a brick wall.  I made phone calls, wrote letters to politicians, constantly tried to change a system that I saw as blatantly wrong!  It takes a lot of emotional energy to fight.  I also understand that many families believe their children will benefit as much from a fulfilling home life as from intensive therapy and they may well be right.

So why did I do this to myself and my family?  Well because I know for a fact that people with Down syndrome can lead very capable and fulfilling lives.  I've met adults that have given me so much hope that my boy will be an independent adult.  Like all parents, my hopes and dreams are that my boy will  be a good man, capable and happy.

I'm not able to measure how much therapy affects outcome, how much is learnt from life, or how much is just genetics but I'm not prepared to take chances.  I will do everything I can to extend Buddy in any way I can.
I recall a day when Buddy was about two.  I was at our local gym and the kids were in childcare.  I saw a group of adults with disabilities and stood enjoying watching them.  Since our introduction to the exclusive world of disability, my heart is warmed by watching happy adults.  So I was standing there with a silly smile on my face when one young man with Down syndrome ordered food from the canteen with help from a carer.

He approached the counter, blowing raspberries and pointing at the item he wanted.  Well.. in a rush of emotions, I collapsed.  I was shocked that this man wasn't capable of speech.  I burst into tears and raced to the toilets.  I threw myself into a cubicle and slid down the wall onto the floor, sobbing.  Loudly!  I couldn't control my tears and was ashamed to find myself crying in such an obvious display of heart wrenching grief.

I think my emotions were compounded by the unexpectedness.  I was loving watching those people.  Little did I dream that I was going to be confronted by the possibility that my child might never be able to look after himself!  It hurt me beyond belief.

I felt guilt too, for my reaction.  I strongly believe that each person has worth and contributes to the community.  I don't want to live in an artificial world where we only have capable, able bodied people.  I would love Buddy just the same if he wasn't able to speak but it's not the outcome I would choose.  While his worth as a person would be no less in my eyes, he would face many more challenges through life.

I will never know if Buddy is the capable boy he is, because of my efforts or if he would have achieved the same outcome without my help.  Possibly we could have just stayed home and played more, visited friends and family more.

Luckily, the Australian system is undergoing a huge overhaul.  When the National Disability Insurance Scheme is fully implemented, families will be able to access as much therapy as they see fit without the exhausting battle behind the scenes.

Finally Australia is moving forward but I will always wonder if I chose the right path.  On a personal level, we have reached a stage that I am able to relax.  Buddy is a capable and thoughtful young boy.  He makes me proud every day in some way or another.  I'm even proud of his misbehavior if it's developmentally appropriate!
So thankfully we put the experience of early intervention behind us and continue with our private therapy (expensive but worth it) and wait for the introduction of the NDIS in our area.  I am starting to leave the younger children with their father more and do things just for ME!  I can spend more time thinking about my adult children whom I have neglected throughout these years.  Finally I am able to give them the attention they deserve and rekindle the relationships that I so enjoy!
Yep, the eldest is definitely shorter!
I hope as the years go by, families are able to enjoy both sides of disability.  Raising a child while feeling supported and, at the same time, being able to feel like a happy, well functioning family.


Kathy said...

What a beautiful post, I hope that you copy these so the kids - all of them - can read them when they are ready. I smiled, we call it 'Mama Bear' syndrome and it is the most overwhelming feeling I have ever had. It doesn't even require a disabled child, just an injustice! I have always been told that God gives his special angels to families who are deserving of a blessing, I'm pretty sure it is true and Buddy is lucky to have a 'Mama Bear'! Thanks for sharing!

Fiona from Arbordale Farm said...

Linda this is such a lovely post. I am sure that there are many parents who have those same feelings. I believe that you are never presented with more challenges that you are able to bear and that there is always a reason for them even if we cannot see them at the time. I am sure this new era of You Time wioll have benefits for your entire family.

Cheryl said...

An honest heartfelt post Linda.
But from the outside looking in I see a mother who did what she had to do. There is absolutely no doubt in my mind that therapy improves outcomes for people with disability and medical conditions. Not everyone will have the capacity to improve, but we have to move away from the model of "assuming people can't" before "seeing if they can"
It is directly because of people like you that this country even has a disability scheme.
Yes it took a personal toll, but it was the ONLY choice.
The lessons your children have learnt from this...priceless.

I'm glad you are finding more balance now, enjoy it, revel in it, you deserve it.

Anonymous said...

Thanks for your post - I have also had to navigate the early intervention system so it is close to my heart. There was never enough resources and hopefully that will change with NDIS coming in soon.

I was lucky to have some great workers though - I would have preferred more therapy but that was always a bigger argument and one that was not going to change anytime soon. I am putting a lot of faith into the NDIS so hope it will deliver
I wish you well,

Madge said...

Much respect to you, as a mother you shine. I just wish my mum could see my 55 year old Downs brother say to his siblings yes I will come for lunch but then I want to go home and spend time with my friends. He shares a house with other disabled people and a carer. My mother would be so happy to see such independence.