Thursday, September 24, 2009

Am I being oversensitive?

It’s taken me a week to write this post. I have been chewing over my experience, wondering if I am over-sensitive or if I just see the world of special needs kids differently.

Last week I took Matt to a special needs school that runs a home-based preschool programme. This means that every month you bring your kiddie into the centre and they will offer advice on which toys and activities you should be doing with the child at home. In addition you can loan some toys for the month.

To join this programme ones child needs to be assessed using a milestone scale and cognitive test. I didn’t quite realise that this was required. So when Matt and I went their last week Wednesday I was taken by surprise. If you follow my blog you know that I have concerns about the way kids are assessed – I don’t see the point in comparing them to typical kids, and letting the parent know how far behind her child is. Rather I think the focus should be on where is your child at, what is the next step, and how to create a fun, exciting environment for the child to move there.

So there I was with Matt and the teacher. As it became clear that Matt was being assessed according to a scale used for typical kids I felt a nauseous. But I told myself that Matt was soon turning 3 and I should be older, stronger, and better able to deal with the outcome. Also the teacher doing the assessment was sweet and gentle. I could see that her motives were to see special needs kids progress and reach their potential. Though I didn’t directly express my concerns with the assessment, she reassured me that she believes in moving at the pace of the child allowing them to explore and discover. She was kind with Matt, and very generous with praise. I also told myself that we can’t hide from these assessments for ever, I may as well get used to them.

So I let the assessment continue. It ended with her reading out the results which were basically a summary of how delayed Matt is in the various areas of development. I can’t even remember the details – my heart was rebelling, not allowing my ears to hear or my mind to register the numbers, it was screaming out loudly that these measurements do not define who Matt is.

The days following that evaluation I felt raw. Like my protective layer has been removed and all the pain and vulnerability has been laid bare. I have been trying to unpack why I react to them so strongly. Here are some unfinished reflections…

Matt is so young to have to undergo so many evaluations. (And I know that Matt experiences less than some of his RTS siblings in other countries). His only worry in life should be what toy he feels like playing with, or how come mom hasn’t got his food ready on time. Not how many blocks this someone wants him to stack or stressing about drawing straight lines.

I have come to wonder how accurate these measurements are, and how do they take into account a child’s will; choice and timing. She would ask Matt to match two pictures of cats. But what if he decided that today he didn’t like the cats and was more interested in the picture of the house that has doors. (Matt loves doors) Does that mean he can’t match? And why should he do what she says, he doesn’t know her or trust her.

She would pull out a new toy to test some ability and sweetly coax Matt to engage with it. She didn’t give him breathing space to familiarise himself to the new toy. Sometimes he would oblige her by following directions and other times he wanted to first test the toy, get to know the toy, turn it, look at it, explore it. There was no time for that, either he used it appropriately or not. Either he could or he couldn’t. There didn’t seem like there was any room for any other explanation. I know I am being a bit harsh, but that is what it felt like. I just don’t think she got to know Matt or his potential.

And I don’t know how much of what was measured was Matt’s ability or if it is a measure of his level of exposure to that activity. Surely if you were measuring an ability you need to introduce the activity and give the kid time to learn how it works. You can see how they respond as they explore the toy. I think these assessments would work more effectively in a preschool setting where the teacher is with the child for a considerable length of time, and could see how the child engages with the toys or activities without the time pressure of an 1.5 hour assessment.

I have such a strong desire to protect Matt from this world of being measured and assessed and evaluated. Of having to stack and count and name and select. Of being gently and sweetly forced, coerced and manipulated into putting something into something else in the right order. Rather I want for him to try and see, to make a mess, to do things differently just for the fun of it, to test the various possibilities, to discover – even if it does take a bit longer, even if we can’t tick all the developmental milestones in the right order on the right time.

My last thought on this matter is that these evaluations seem to undermine the achievements and hard work that Matt has done. In our house every mini milestone is such a celebration because it requires much input, waiting, patience, wisdom, sensitivity, appropriate engagement, exploration, discovery, encouragement, and even more patience. This whole process is not recognised or validated, rather one is just left with a sense of what one’s child is NOT achieving.

And I think that makes me the most angry. I value Matt, and our life style of our celebrating too much to let it be spoilt by comparisons to typical kids and defining Matt by what he can’t do. I don’t know how I am going to survive this world of working with kids of special needs, I just seem to see things so differently.

13 comments:

Kristi said...

Dear Jacqui,
I have the exact feelings. When I read your post I could relate on many levels. I don't know how I'm going to survive it either. I think the same. love ya, Kristi and Noah.

Kerri H said...

Ditto here..I still am getting used to it all! I just went thru another eval yesterday w/Logan. Now I'm feeling not that great about things.. somehow we'll make it..we just have to figure out how! Hugs to you too!

Margaret said...

Hi Jacqui. I was a couple of years behind you at school, and have been following your blog for a while now as I find it so interesting and humbling and inspiring. I thought I would offer my two cents, for what it's worth, as far as assessments go. I don't know if it's our schooling and all the scoring that went along with it. I just thought you'd like to know that every time one of my kids gets assessed, I get a knot in my stomach and get very sensitive to any areas that might need attention. I've realized every parent feels that. Afterwards I feel angry at the teacher and am racked with guilt over where I went wrong. What I'm trying to say is that whoever our children are, we all have that sense of protection over them. Matt is so blessed to have you as his mother, as you, like the rest of us are a mother hen! :) Love Margaret PS I LOVE the ball hanging from the stocking and am going to do that for my kids this holidays. What a lot of fun!

Cindy said...

Hi Jacqui,

I used to feel exactly the way you're describing...I could have written that post. The last time Natalie was evaluated, which was nearly a year ago, I think I was more excited about the progress that she'd made since the previous eval that I didn't spend too much time upset about where she was. A year later, we're coming up on a new round of evals to get ready for her next IEP and I know she's going to do well in some areas and poorly in others. I'm going to try to concentrate on the improvement she's made since last year and not focus so much on the numbers that show she's not doing age-appropriate things...we all know that!

I guess what I'm trying to say is if you can somehow see the eval as a tool to see how far Matt has come, instead of seeing it as a put-down of his skills. As long as we're asking others to help us with our kids, they're going to use evals, because THEY want to see how far our kids are progressing, to justify their own work. But I use it to give Natalie a high five on how far she's come...because she's working really hard.

Hugs! I only want to encourage you. You aren't being overly sensitive...but I encourage you to rise above it. It's so hard to do! I don't know how much I'll cry at Natalie's next eval... I'll let you know!

Cindy :)

Kennet said...

I AM SO PROUD OF YOU!!! AND LUCKY ME TO HAVE YOU AS MY SISTER!! AND LUCKY LLOYD TO HAVE YOU AS HIS WIFE!! AND EVEN MORE LUCKY MATT TO HAVE YOU AS HIS SUPER MOM!!!

Belinda Chaplin said...

I wanted to leave my two cents... thanks SO much for being honest. Without your honesty I think so many of us wouldn't even have thought about the assessments as an issue. And you are not being oversensitive in any way because Matt is progressing and doing great in so many areas and as you say the test itself is not helpful as he may be able to do the task but may not want to do it at that stage! Keep things in perspective, keep telling yourself that he is amazing and each step is a great success and as someone said just use the assessments to be able to track the changes over time: which you might not even see being so close to him. I know that when I was in SA I could see the difference even in the 5 weeks between seeing him and maybe that is something that you may miss out on noticing if he is not evaluated in this way?
Hope Matt has a special day today!! Bless you all, B

Neeb said...

HAPPY BIRTHDAY TO MATT-MATT! Love to you Jax. I know God will not give me anything I can't handle.

I just wish that He didn't trust me so much. ~Mother Teresa

Neeb said...

I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

Matthew, David and Leesa said...

Hi Jax,
I've been thinking about your post over the last day or two. It's clear that this is something you feel really passionately about - feeling passionately about important things being one of your best characteristics:-)
I haven't had the (dis)pleasure of having to have my child formally evaluated, so I have no personal experience of what it’s like. And neither am I a mom to a special needs child. So these are just my thoughts on an issue that I know pretty much nothing about – I hope they don’t seem presumptuous.
It seems to me that knowing what a child is able to do can be useful. Development is a continuous process that involves building on things already learnt. So for an outsider (or an “insider”, actually) to help a child develop to his full potential he/she needs to know what building blocks they already have. I would think that this is one of the purposes of these evaluations? But, from what you are saying, the method of evaluation is very poor – it puts your child under pressure, it makes you feel down about what he “can’t do”, it uses unhelpful comparisons to so-called “normal” and it doesn’t actually make an accurate assessment.
So have you thought about how it can be done better? I’m sure you have, but so have I:-) Would developing a different (and better) system of evaluation help you to turn this into something positive in your and matt’s life? It seems your going to come up against it time and again. Behind all the stacking of blocks and matching of cats there must be specific questions that the evaluator is trying to answer for example – where is Matt at in terms of fine motor control, or gross motor development etc. I wonder whether a questionnaire of some sort could be developed that a caregiver could fill in over a period of a few weeks, which could answer those questions. The “results” need never be compared to “normal” – they could just give a starting point for Matt himself, and be something that his own progress can be compared to in future.
You are creative and intelligent (and passionate!), so perhaps together with a sympathetic special-needs educator, you could come up with something. Then the next time someone wants to evaluate Matt in the conventional way, you can hand them all the info they need instead. Perhaps it would be something that only you would use for Matt – but could this be an opportunity to develop something which will assist other moms in your position? Now that I think about, I wonder whether someone else has done this already – it can’t be an original idea:-)
Anyway. Thanks for continuing to share your struggles and your joys. And happy birthday Matt!!!
Love
Leesa

Craig, Taryn and our blessings said...

Hi Jax - this is a beautifully honest and poignant post. I think you've touched on something worth investigating more deeply, as one of your other commentators (Leesa) pointed out.

You are not alone in feeling like this. If someone were to assess my 2nd child for age-appropriate milestones, I think she'd possibly do dismally, merely because she is aggressively anti-establishment! If you ask her to draw a cat in blue, she will draw a house in orange. Not because she didn't hear the instruction or can't follow it, but because she wants to do what she wants to do (rebellion is one of our issues!). There are billions of kids who do not fit into the box made for the other billions of kids. And I think that is especially hard on the person/s who best know that kid - most especially the parents (which is why I now, as a parent, cringe at my own school teaching days and am enjoying now teaching my own kids).

These emotions you are experiencing are very real - many moms experience them - yours seem to be amplified by the deep sense of love and protectiveness you have for your sweet little Matt. You are not wrong, strange or alone in thinking/feeling this!

You are a wonderful, wonderful, caring, passionate and dedicated mother - the best mom Matt could ever have!

Much love, hugs (albeit cyber ones) and prayers

Taryn

(PS Happy Birthday! and PPS Lloyd got to meet my niece before me!! He was the paed on duty for the birth of Emma-Kate - my bro and sis-in-law were suitably impressed :) )

Preemie Miracle said...

I found your blog through another RTS cutie. My son has Cerebral palsy and not RTS but the feelings are VERY much the same. Tomorrow we go for our 4 year old IEP. I dread hearing how delayed we are compared to other kids. Trust me ( and any other mom of a delayed kiddo) we KNOW they are delayed. We deal with it every single day. We don't need a piece of paper telling us our 4 year old acts like a 9 month old.

Preemie Miracle said...

Oh and our blog is prematuritywithlove.blogspot.com

Anonymous said...

Hey,

I have the same name as this little fella. I've caught your blog a few times. I also have a son who was very very sick but now he is OK. I think what you're doing is cool and I hope MT is doing well.

Matt Tooke, London, England

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