Thursday, April 10, 2008

9th April 2008

Dear Speech Therapist

Thank you for the assessment report that you and your students carried out on our little Matthew. We so appreciate the time and the effort that was given at no charge and we really do look forward to ongoing partnership with you. I recognize your (and your students) deep commitment to helping children reach their full potential in communication.

I want to share with you a little bit of my experience of being a mother of a child who has speech delay. In so doing I will also comment on my experience of the assessment report which may be of value to you as you seek to empower the parents of the children with whom you work.

Having a child with delay can be a very hurtful experience whilst also being an enormous privilege. When I was first told that Matt had a syndrome and would be delayed, I did not know what that meant. I feared the worst – that he would never be able to do anything, never be able to connect with me, never be able to feel love or express love. As he has grown and developed, each milestone is like the BIGGEST gift and each is a REASON TO REJOICE. This is the privilege – to watch the miracle unfold, to see him become all he can be.

When I am with him, alone, we have so much fun. I don’t see him as delayed or different. He is my Matt and I am helping him to discover the next step in life – whatever that may be…to crawl, to taste something new, or to learn what ‘clap’ means. I don’t feel sad or discouraged when it is just him and me.

Your assessment report was positive in that it helped me recognize that certain of his behaviours do indicate that he is moving towards communication. This was encouraging. I also found that the recommendations empowered me with information about what I can do to help him reach his potential.

The hurtful part of raising a child who has delay happens when we are around other children of similar age to Matt. There the delay becomes so apparent. No one can deny that he is different, that he is not the same. My heart breaks when I see what other children his age can do. I have to fight back tears. I have to muster all my energy to counter the discouraging thoughts that tell me “Matt is not good enough, Matt is a failure, Matt is so far behind and is therefore worth less”.

My only weapon against this discouragement is to not compare Matt. I have to choose, every time I see another baby or toddler, to not compare. I actively speak to myself saying “Matt is doing fine. There is no point in comparing my Matt who has part of one of his chromosomes missing, with a child who has all his chromosomes. If I make this comparison then I may as well compare a child who has an amputated leg with one who has full use of his leg and expect them to run the same distance.” This is what I tell myself – often, if not everyday.

In the light of my ongoing, daily battle to NOT COMPARE Matt, you can imagine the discouragement I felt when I read the following in your assessment report:

“Mathew was placed in the 3-6 month age group in terms of communicative ability. He is emerging at a 6-9 month level.”

I fully recognized that your report was not intended to discourage me, but I found the comparison with normal unhelpful and disheartening. I am aware of his delay, but I am equally aware of how helpless I am in terms of fixing him and somehow making him “normal”. So even though it is standard practice in the medical world, I would rather we don’t even compare him to “normal”. I recognize that as a speech therapist the age related milestones provide you with a bench mark. My recommendation to all therapists would be that they note this in their own files, but omit it when reporting to parents.

I was so encouraged reading that book you recommended “It takes two to talk” (Pepper and Weitzman) because the authors were able to outline the stages of communication development (Discovers, Communicators, First Word Users, Combiners - see page 4) without linking it to age. I was able to plot which stage Matt was in and then get input on what I could do to help him move on to the next stage. That was empowering and encouraging.

I am certain that, similar to my profession of social work, speech therapists do not work with a child in isolation but spend time and effort in engaging the parent and building partnership with the parent. I am hoping that my perspective expressed in this letter can be used to help you and your speech therapy students to have a deeper understanding of the impact of assessments, and to word assessments in such a way that harnesses hope and action from the parent, rather than unintentionally inflicting discouragement and despair. I use the word unintentionally with great sincerity because I have NO DOUBT that you and your student’s motives were only to encourage and empower us as parents.

I really look forward to your response to this letter and to our ongoing working relationship.

Kind regards,

Jacqui

5 comments:

Jessica mommy to Alex/ RTS said...

very well said.

bridge said...

Jax, your blog is such an inspiration and you are such a talented writer. I love reading it.
When your friends talk of you it is always with the deepest admiration and respect.

Michelle said...

you couldn't have worded that any better than you did. It's so discouraging when they tell you your 5 year old functions as an 18 month old and he needs to do "x" to catch up a little...

Sys said...

Well worded Jacqui. I fully support you. Statistics and numbers might be useful for therapists. Parents need practical tools that fit.

You and Lloyd are fantastic parents - and Matt is trying to show us the way!!

Big hugs
Jacqui's mother

hennhouse said...

Oh how I hate those reports. Great letter.