Tuesday, April 6, 2010

What do you wish your child's therapists knew?

If there was one thing you wish your child's therapists knew, what would it be?

That your child hates them but you don't have the heart to tell them?

That you have no intention of doing the homework they have prescribed you?

That you think what they are doing is a waste of time?

For me, there is one thing that I think Ashlea's therapists forget, and it actually has nothing to do with Ashlea herself. Sometimes, I think, the therapists forget that we, the parents are grieving. Especially in the early days (and by early days I mean at least the first 3 or 4 years!).

They forget that what for them is a job, for us is our child. Our lives.

Who else has sat through an IEP/IFSP meeting looking calm and serene on the outside, but on the inside your brain is screaming:


Not my child.

Not like this.

I used to feel like this all the time - especially when we attended the RIDBC. I think because that was the first service we attended, and some of the children there have pretty significant disabilities. I remember we would be there, and all the therapists and parents would be chatting and smiling and acting normally. All I could think was this isn't normal.

Not my Ashlea. Not like this.

As time has gone on, this feeling has diminished, but it still strikes me as odd that grief is the big taboo that no one talks about. Of all the seminars and topics of discussion put on by the centres we attend, none has ever covered the topic of grief.

I often wonder when I see new parents, if they are struggling to hide their tears like I used to.  If they are having those same thoughts I was.

Not my child.
We don't belong here.

How did this happen to us?
I would like Ashlea's therapists to remember from time to time, that as a parent I still grieve for what could have been. I don't know how they would show that they were aware of that - especially as I probably wouldn't outright tell them.  But maybe just a little acknowledgement of what us parents go through.  Just occasionally.

What do you think your child's therapists should know?


ferfischer said...

I remember this exact feeling when we toured Kidstreet, Cici's school. The people were wonderful, the place is fantastic and Cici is doing amazing there. But when we toured it, 3 months after the accident, I was on the verge of tears the whole time. I just did not know HOW in the world we got here. This wasn't where we were supposed to be. Sometimes when I get like that, I keep the tears in. And sometimes someone will ask, "are you ok?" or "how are YOU doing?" and the faucets will come on. To a total stranger. I just can't help it. I couldn't be more thrilled with Kidstreet now, but at the time, I was just so sad. How did this happen to us, indeed.

Big brother, Little sister. said...

Alison- I tick all of those! lol
I would love our therapists to know :
we think they don't have all the. answers.
we don;t want to be friends
cooper does not like you
and I don;t really either! neither does Pepper!
we don;t like you coming into our house and personal space
we have much more of a life outside our label.
we like you for your funding help and money!

Anonymous said...

Oh yes, I completely agree...I am still new on this journey of disability and I pretty much find myself grieving everyday for what should have, could have, would have been...I also find myself feeling guilty for my grief,when we are lucky in some ways for being somewhat mild on the scale of disability. I feel like I should be grateful that this is what we have, that things could be so much worse, yet at the same time I dont feel this way, I just grieve and feel that a disability is a disability and I didnt ask or want for this for my child.
I wish I could get through all of this without being so emotional, so heartbroken. I hope that one day, when my child needs it the most, i am strong enough to help fight the biggest of battles for her.

Ally {mtm} said...

What a great post Alison.

I have moments of that too, although Isla is mild, sometimes it's all too overwhelming to deal with.

It's interesting that you say no one talks to you about grief, so true. I had to find myself a professional to help with that, it should be part of the process within the disability support {or what support there is, if that makes sense}.

Thinking of you xx

Sarah said...

These are some of my wishes:

I would like them to know what it is REALLY like for parents like us!

I would to tell them I dont think what they are doing is working! (Have to admit sometimes I have done this though, I am very upfront about how I feel about therapies etc they put Violet through!

How much I hate having to hold my child down for every damn procedure, therapy etc!

How much I resent after almost 5 years of still having to go to the hospital on a a regular basis plus other appts for therapies etc and knowing it will not be ending any time soon!

That they dont know much because more than half the people in her therapy team are in there very early 20's, have not had a child for a start...let alone a child with additonal needs!

Boy I think I could write heaps but that will do...

Jacqui said...

I'm with Bron on the "I/Moo don't really like you".

I came home early from work today to meet with our service provider to talk about wheelchair seating. Only service provider never showed up. No telephone call or email. Just a no show.

So, I wish they would realise that my time is just as important as their time. I don't like their intrusion into my life and I don't need to see them many times because they don't do their job properly the first time.

Now that i've got that off my chest, I feel better.

n0thingbuteverything said...

I think we're pretty lucky that I actually DO like all of S's therapists. And he does too.

Going back in time to S's first physio when he was a baby, I wish she'd known just how much I was clinging on to her every word for hope and feeling devastated about any, even slightly, negative observation that she made. I wish she had even the tiniest idea of just how difficult I was finding it all. What was a job to her was a devastating, unexpected life turn for us.

You put it so well Alison - it is grief and it should be addressed more often.

More recently, I definitely agree with you Jacqui about the time factor. And with everyone else on the 'not having all the answers' factor. I wish they knew (or maybe am glad they don't know) that sometimes while a therapist is telling me the things I should be doing at home, I might be nodding in agreement but in actual fact I am dividing what they say into 3 categories: yes, we'll definitely do that/meh, if we have time we'll do that/forget it, got better things to do with our time ;-).

Mo said...

The homework...I try and do some but never ALL of it. Really? Do they think we are superwomen?

Lacey said...

That is so true! I never thought about what the therapist should know. She just comes and does her thing and leaves. We are lucky to have very good, understanding therapists!

Just Writing said...

I completely agree. I am still in the "early days" so it's all new to me. I think I have not completely grieved yet.

C said...


I just stumbled on your blog ( coming from Team Carter) My youngest daughter is 3 and a half months old and has been diagnosed with Rhizomelic Chondrodysplasia Punctata. It's a very rare metabolic disorder that is most often terminal. She appears to be on the mild end of the spectrum and no one can really tell us what her prognosis will be.While there is alot of hope in the not knowing there is alot of fear and uncertainty as well.
This posting really struck home with me as this past week we were at Scottish Rite hospital waiting to be seen and as I looked around at all the kids there all I could think was " How did we get here? I don't want to be a part of this club!!".
I have two older girls (2 and 4) and I simply don't have time to grieve out loud. I know it has to happen sometime but for today and tomorrow and the forseeable future there just isn't time.