Children with diverse needs — small steps and the big picture
By Kylie Bice
I meet and work with lots of parents, teachers and education assistants who feel discouraged and demoralised by the seemingly small amount of progress a child with disability is making.
Some even tell me they are making no progress at all. While it is true that sadly some children do have degenerative conditions where diminishing progress is a reality, this is not true for the vast majority of children with diverse needs.
I am thankful to have had the benefit of working with young people with disability over time, both with individuals and collectively, and this has given me the gift of being able to see what can be achieved over time. The things that a parent or early primary teacher says a child can't do at 7 years old, I see a young person being able to do in later years, plus so much more! Yes, it takes hard work, persistence, patience, energy, appropriate intervention and teaching, and so often it feels exhausting and as though no progress is made, but overwhelmingly this is a good news story!
This is my attempt to encourage parents, teachers, education assistants and carers to stay hopeful, to consciously see the milestones being achieved (no matter how small they may seem to others) and to seek support when despair or doubt creeps in.
I can hear now the desperate voices of many parents tell me that the battle to remind others to have hope for their child, is relentless and often soul-destroying. I have heard the disillusioned sighs of loyal education assistants wonder if they are 'getting anywhere' with a student. The reality is that people who work with children, adolescents and adults with diverse needs over many years, (myself included) would not do this job if we could see over and over that we are wasting our time and that no progress is possible. The fact is, there are too many teachers, therapists, doctors, specialists and researchers who keep on talking about ways to teach, interact, support young people with disability because we see over the decades that there is hope. That people with disability do learn, do grow, do experience love, self-fulfilment, hope, employment, success. Yes it is to varying degrees, and yes no one strategy works for everyone, but the journey does not have to be a hopeless one.
As I write this, my heart breaks for those parents and teachers who do despair for their children with severe illness, behaviour or other need. And yet, the teachers and therapists I know who work with children such as these, seem to have the most hope of all. Perhaps because they find promise in the smallest of milestones, and have grasped that truly precious gift - to be able to be actively and consciously grateful in the moment for every minute blessing.
I'm not going to say it's easy, I know too many exhausted parents who've struggled to get help for their child over too many years to misrepresent the journey in that way. But I have also seen the big picture over time (which is a blessing in itself) and this is what I have learned.
Compare each child to no-one but him/herself. It is a dangerous and demoralising game to compare ourselves and our children/students to others or to society's definition of 'normal' or 'successful'. We can only ever be ourselves.
Stay focused on the small steps and make them smaller still if they are not being achieved. I too often see parents and particularly education assistants despair because the IEP goals are too big or vague and so there is no sense of progress.
Celebrate each step achieved (no matter how small they may seem to others) as a major milestone. This reminds those working with/parenting a child that progress IS being made - check out this blog post from 'Autism with a side of fries' for an example! http://autismwithasideoffries.blogspot.com.au/2014/10/a-few-little-bits-of-awesome.html
If possible, keep records of progress — how much, how often, when, what etc. It doesn't matter how formal (school records) or informal (video diary, blog). This helps a lot with the 'one step forward, five steps back' phenomenon. It is SO hard to see progress in the day-to-dayness, so this helps to reflect accurately over time.
Have 'the big picture' handy when it's needed, but put it away in the day-to-dayness.'The big picture' is important for planning, reflecting, celebrating over time, but it can be discouraging too and can stop us from celebrating the small steps.
If you feel as though nothing is working, try something different. If you are too tired or too close to the situation to think of a different strategy, then ask for help from experts or someone who can look at situation objectively. NOTE: Education assistants and teachers in Australian schools, there is SO much expertise available to you, often at no cost, please keep asking until you find it!
Seek support if you are feeling exhausted, discouraged, hopeless, sad or angry. It's hard. No matter how independent you are as a person, learning how to develop a community around you is a vital skill. Whether it's therapy, funding, counselling, food, prayer, a listening ear, a babysitter, strong coffee, ideas, encouragement, a night out. Ask for help. Please. Just ask and keep asking.
There is hope. Hang in there, watch for it, hang on to it!