Sunday, April 13, 2008

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

Saturday, April 5, 2008

Small steps versus mini-steps

About 2 weeks ago we met with Matt’s speech therapist who has experience with children who have feeding difficulties. It was a helpful session where she was able to point out what we need to do to get Matt to tolerate texture and to learn to chew. First: use a baby tooth brush (it looks more like a small stick with a textured rubber top) to rub Matt’s gums. Second: use the Lateral Feeding Technique of popping a small bit of very chewable food into Matt’s cheek between his gums thereby helping Matt to learn how to chew whilst avoiding the gag sensitive middle and back part of the mouth. “Easy!” I thought – “I can do this”.

Armed with these steps I returned home to put them into action immediately. I bought a baby tooth brush and tried to rub Matt’s gums – NOT A CHANCE. He wriggled out of my reach, pushed the brush away whilst vigorously turning his face from me. He would not let me near his mouth regardless of how much I begged, pleaded, forced, or cajoled.
Later we tried the Lateral Feeding Technique – as soon as my finger slid in along Matt’s gums he GAGGED and proceeded to VOMIT all food that he had consumed in the previous 5 hours.

I am learning that what seems like a small step is actually a big step. I have to find the tiny mini-steps between where Matt is now and that “small step”. So our first mini step was to make friends with the toothbrush and play with it. The second mini step was to let Matt put it in his mouth. He was a lot more welcoming of the toothbrush when it was on his terms. Third is to dip this toothbrush in his favourite pureed fruit and offer it to him as if it were a spoon. Then he is very eager to endure it in his mouth, once even allowing me to slide it along the side of his gum. As for the Lateral Feeding, I’ve put that on hold until he can better tolerate foreign objects in his mouth. I’m hoping the toothbrush process will help with that.

We are returning to the Speech Therapist on Monday where she is eager to help me work out other potential mini-steps that will slowly move us towards that first small step.