‘Family-Centered care’ it sounds so simple and so obvious.
But why it is so often completely ignored and misunderstood by the system?
Maybe it’s because the system that we are caught up in wants to treat everyone as an individual, I don’t know.
But we don’t exist alone, we exist as families, live and work and play, hurt and suffer, win and lose as families.
The family unit is like the body of Christ described in 1 corinthians 12:26 “If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it.” If one member of the family is struggling with a hidden disability then every member of the family is affected in some way, it is impossible not to be.
The system seems say this…
“we will help your child in school, you will help your child at home”
Then it says is this…
“We will tell you what to do and you can do it on your own.”
“There is no money for therapy, you are your child’s best therapist”
How can this be the best way to help? How can this be right?
I spent much of the first 4 years of Charlie’s life asking for professional help, for someone to recognise Charlie’s difficulties as real, for someone to step in and help and to be the professional. I had never heard of Family-Centered care, but I did my best to try to explain that that was what we, as a family desperately needed.
Everywhere I turned I was told NO, I was told that my expectations were unrealistic and that what I wanted was simply not available. I don’t easily take “no” for an answer but by this time last year, I was so incredibly frustrated, my heart was broken and I was exhausted from trying to get blood out of a stone. I hoped that getting a diagnosis would change this but honestly, as I found out much to my disappointment, it changed nothing.
But something did change, and Thank God it did because truly I was reaching breaking point.
This time last year when we were planning to meet an OT trained in sensory integration for the first time, she told me to “Bring Grandma”.
She felt that if Grandma had some time during the week when she was caring for Charlie then she should be involved in his therapy too. Radical – I know but so simple and logical, and having grandma there at that first meeting has paid massive dividends. Why? because Family centered care is so important, because families are important and because anyone who is not part of the solution can quickly become part of the problem.
Charlie’s ASD presents as “mild” or “high functioning” because of this we were told again and again by teachers and professionals that his difficulties were our fault. We were sent on parenting courses, told to discipline more, be stricter, even to starve him into eating.
If I could single out one way in which Sensory Integration Therapy impacted my life, it is that every single therapist I have ever met has treated me as part of the solution, not as part of the problem. It is so refreshing to spend time with someone who gets that your child’s difficulties are not caused by you.
In August, I read this in Lucy Jane Miller’s book Sensational Kids p61
Parents who are living with sensational children need support. They want confirmation that their children’s problems are real and difficult to live with and are not the parent’s fault. They yearn to hear that they are doing a good job and that their efforts on behalf of their children are important. Parents of children with visible handicaps get a lot of support. Parents who have a child with the “hidden handicap” of SPD need support too, but are likely to be met with stares and demeaning comments when their children act differently than other children.
In family centered care, parents and therapists become partners who assume different but essential roles. The parents identify priorities and are the experts on their child; the therapists measure progress toward the established goals and are experts in therapeutic technique. Using a family centered model, parents and therapists together use a specializes way of thinking about everyday life in order to achieve the goals that reflect the family’s culture and values………………….
When I read this I cried. There it was in writing, exactly what I needed, and exactly what I had been trying to describe to everyone for years. It had a name, and there was no reason to settle for less.
We are blessed, because our family is so supportive, and because we have finally found the family centered care we were looking for.
There are so many families, still struggling to get the help that they need from professionals who tell them that they should settle for less than the best, or worse that their parenting is the cause of their child’s difficulties.
There are also families where grandparents don’t get it, where relatives simply don’t understand, but how can they when they are not treated as part of the solution?
Grandma made Charlie a lovely weighted blanket, which he uses every night, to sleep and can hide under when he needs to feel calm.
Then this happened, and this was awesome…
Just before Christmas my sister took the kids out for a walk and came back with Charlie sobbing crying. She said he had fallen over but was fine afterwards, then about 3 minutes later he started screaming for no apparent reason.
He kept saying that his neck hurt but there was no mark or scratch or sting.
Then we found this tiny little tiny twig in his hood.
Looks like it fell off a tree and landed in his hood, touching his neck on the way past.
Poor Charlie was so upset, I was sat holding him tight on the couch, trying to get in as much deep pressure as I could.
While my mum (Grandma) was looking for a heavy blanket to wrap him in I heard her say this to my sister…
“It must have brushed him lightly, and tickled or surprised him, The OT said don’t let things tickle him cos it will hurt him, if you are going to touch him do it firmly not very lightly because that won’t hurt him”
Knowledge is power and this is awesome, this is because Family-Centered care works, and no matter what you are told “there is no reason to settle for less”.