Wednesday, April 28, 2010

Have you ever heard of Chronic Sorrow???

Most people see me as a strong, confident and independant person who is highly passionate about her children. This is all just a mask of the real me. Most people wouldnt have a clue who I really am. Having children with "issues" has changed me considerably over the years, some things for the better, most for the worst, one of the not so good ones is that I regularly have highs and lows, ups and downs, depression and sometimes I just struggle to cope. I find it difficult to relax, I battle with anxiety and quite often feel alone in my struggle and very overwelmed with what life has dealt. Sometimes it feels like if I stop fighting for my kids for just one moment, the wheels will fall off. All this has led to me becoming a very insecure person, a far cry from the strong person I once was.

It hasn't been an easy road for our family and yes those closest to me, especially my husband, have born the brunt of my anxiety and depression. I always felt guilty - why couldnt I cope, its not that bad, there are people worse off than me, pull yourself together, get on with life etc, but I never seemed to be able to. I thought it was just me and my personality, however I have just read a booklet on Chronic Sorrow that parents of children with disabilies experience.

It came with mixed feelings. On one hand it was quite relieving to know that I'm not alone in alot of the feelings I have and the other hand great sadness for everything I've lost because I haven't acknowledged or dealt with these feelings for all these years..

The opening 2 paragraphs of the introductions says:

"Many parents who have a child with a disability find themselves constantly doing a series of juggling acts. There is the organisational juggle of managing life with work and family demands and a range of health and education professionals to deal with. There is often a financial juggle if one parent is unable to work or if there are expensive therapies or travel to pay for and there is the emotional struggle of loving their disabled child, but wishing things were different, trying to be positive and hopeful for their future, but feeling sad, angry and worried about it all at the same time, trying to accept their child as he is and at the same time hoping things will improve.

Parents often find this juggling very difficult. It is complicated and exhausting. Some parents are reluctant to focus on their feelings of sadness, anger or guilt. They feel that staying positive is their best strategy and that acknowledging their difficult feelings will drag them down."

Now if you have a child with a disability you will instantly relate to this, as I did. I cried and cried finally realising I was not alone with the battles going on in my mind.

God bless every single parent raising a child with a disability..........

More on chronic sorrow will follow.....

Tuesday, April 20, 2010

Another Inspirational quote

It has not been a good couple of weeks in our house, so this post is incredibly quick and not at all orginal or interesting, but I have 3 little people who need me more than ever right now, so I need to get off this computer and put my house in order so to speak. So this is it for the week:

"No man can possibly know what life means, what the world means, what anything means, until he has a child and loves it. And then the whole universe changes and nothing will ever again seem exactly as it seemed before."

How true............................

Sunday, April 11, 2010

ABR Manual Hours to date

OK I've had a count up.

A total of 2304 manual hours over 3 years and 4 months of ABR, or an average of 15 hours per week (excludes the 3 weeks/year when we travel to Australia for ABR - it does not include holidays because we don't have many holidays from ABR).

In addition to these hours, there is the time spent on setting up for each different application, making new foams, "fluffing" up the old ones, recording home videos for each clinic trip, keeping records, doing this blog etc, etc.

Wow and people have the audacity to ask me when I'm going back to work!!! On that note I do actually have another part time job, besides being a therapist and a mother, I'm an Accountant believe it or not. I have a University degree in Accounting and Finance, but currently I only use my qualification/brain as my husbands small business accountant/bookkeeper. As you can see ABR "technician/therapist" was not my chosen profession.

I have to admit that I do get help from my husband and my wonderful mother. Without whom I would have never been able to achieve these hours.

My husband averages about 2 hours per week. He does the "active exercise" which is one of the many ABR "tools".

My darling mother normally does about 3 hours per week. She currently focuses on the "ball rolling" technique.

I average about 10 hours per week. Some weeks its more, some its less. It just depends on how much is happening for the week. Initially I did it all, but that wasn't working for anyone and its all about finding a happy balance that works. And as they say in ABR circles "its a marathon, not a sprint".

So as you can see, ABR is no miracle cure, and effort is required, but at the end of the day its the only thing that has helped Corbin and the future of our gorgeous little boy is what its all about for us.

Sunday, April 4, 2010


Ah what a buzz in our house this morning as the children awake to see what Ester Bunny (Corbins pronunciation) has left for them, and then when their treasure is discovered, and eaten, soon arrives the hyperactive excitement and volume that can only follow a chocolate fix in our household !!!!!

I do hope amongst the chocolate that you take a moment to remember what Easter is really about.....