Once upon a time, not very long ago at all, I saw my family’s neurological, sensory, communication and developmental differences as ‘issues’ that needed interventions from clinicians. We were struggling daily as a family, and I thought that helping my children ‘be OK in the world’ would help us all.
I did not believe that ‘being ok in the world’ meant being a compliant child who said and did the right things at the right time, all of the time. So I did not see a role for behaviour modification therapy or social skills training. However, I did believe that ‘being ok in the world’ meant receiving a broad education, finding a ‘good’ job and a home, and developing healthy relationships with friends and intimate partners. I felt that compassionate, professional therapists could help my children achieve these things. For a short time, we paid some wonderful people to work with my eldest child around coping with going to kindergarten, playing with other children, communicating with peers and adults, and being independent in activities of daily living.
But we had a problem. My eldest child wasn’t remotely interested in most of these goals. He loved his siblings, and his grandparents, acting out scenes from his favourite show, and moving his body as much as he could. He didn’t like kindergarten, he wasn’t at all interested in making friends, and he didn’t have a huge drive to dress himself, eat or sleep independently. In fact, the more we tried to encourage and support him around these things, the more we were seeing big behaviours that related to stress, anxiety and opposition.
We put therapists on hold ‘for a while’ and got on with the business of living together as a family. I could tell you that it was a considered decision based on a clear rationale, but to be frank, we were exhausted and busy with twin toddlers and we were tired of ‘battling’ our own child.
Our therapy break stretched from months to years. As we lived and played together, I totally reframed my thinking about what it means to ‘be OK in the world’ and the role of therapy in the lives of disabled children.
I discovered that each of my three children was developing their own answers to these questions:
- Do I most value interdependence and feeling needed by others? Do I value my independence and feeling capable?
- Do I like to create and experience new things? Do I value learning, collecting and keeping things?
- Do I need to be connected to the earth? Do I need to be connected to the digital universe?
- Do I value the opinions of others? Do I value my own opinions and ideas most?
- Do I enjoy learning through reading, play, movement, listening, creating, watching or experimenting?
- Do I like to have a lot of friends my own age? Do I prefer to spend time with my family and a few trusted adults?
See how much variance you’ll find when you answer these questions? There are so many different ways of living in this world. There are a million different ways to define the goals for your life, and this will change many times in our lives. The way I see my children’s needs and what’s best for them, is not always what they see as best for themselves. The way that a therapist will define my child’s goals, and what’s best for them, will also not likely be what my child sees.
This small revelation has had huge impacts on my beliefs about the value and place of therapists in the lives of disabled children and young people.
Even if early intervention is conducted with kindness and respect toward a child, when the goals and methods of therapy are set by a parent and therapist, we are sending the child a message that their values, preferences, hopes, beliefs, and desires are not important and should be suppressed, or stuffed away.
Disabled children are the victims of the intersection of two strongly held beliefs. Firstly, the belief that able-bodied, neurotyopical people know the best about how they should move, communicate and engage with the world. And secondly, that adults know more than children about what is best for children and what they need to do now to be happy and well as adults.
How do I support my own disabled children to develop, learn and be happy now, and remain mindful of their future wellness?
In my family, working out what each child needs and wants is lead by them and flows from each of their unique values and preferences. As parents we provide loving feedback, support, ideas, encouragement, and an open listening presence. We bring the benefits of more life experience and an outside perspective. They bring their deep, inner, true knowledge of themselves.
Figuring out what each of my children needs is a beautiful dance based on a mutual respect that has grown out of hundreds of small moments of playing together, talking together, giving each other space, and trusting one another.
We’ve come to a place of trusting that together as a family we can work out what we all need. We trust that we are all good and whole as we are. We trust that we all have an innate desire to learn and grow, and that if we have what we need in our environment and relationships, we will learn and grow. We have slowly shifted to giving our three children as much freedom as possible to sleep when they need, move when they need, explore as they need, make noise as they need, communicate how they need, access tech as they need, see other people as they need, go out or stay home as they need, and learn what they need.
Rather than investing hours in to therapy, I invest time in to making sure that our home meets each of my children’s needs. I invest energy in to making sure that we have people in their life who want to be in their life without being paid to spend time with them – adults and children who care for my children and see them for the spectacular, unique humans they are. I invest time in to being there for each of them as they need, and giving each of them what they need.
Well what is the role of therapists? What do I do if we are struggling?
I’m not suggesting that this way of being as a family of disabled people is challenge-free. But I really don’t know if our struggles are different from other families?
- We’re a family of people with unique sensory, social and emotional needs living, playing and working together – and our needs often clash.
- I’m on a journey of accepting and loving each of my children with their unique personality, strengths, and struggles.
- We are all dealing with our own fears and triggers and how they impact on our relationship with one another.
- My children are taking risks, exploring boundaries, finding themselves and seeking love and connection, and that causes challenges and worries.
- My children need me to meet their basic needs for shelter, food, safety, and their growth and development. Sometimes those needs exceed our family resources – financial, time, or emotional.
- We all have so little control over the world we live in but society’s values, government policies, discrimination, and community connection or disconnection all impact on our families.
There are times when these struggles overwhelm us as a family. We have had times when we have been in crisis. We have had many times when our children’s needs have exceeded our capabilities. I have had moments when my physical or mental health has impacted on the family. We have had developmental or medical concerns beyond my own knowledge or skills. Last year, I wrote a whole post about coping with hard times here at Respectfully Connected – ‘Tips for surviving difficult weeks and months’. In short, we have a crisis plan that involves getting more sleep, slowing everything down, doing only what really fills us up emotionally, taking time out, and asking family and friends for support. Before we check in with a therapist, we ask – have we waited to give this time to resolve on its own? Is there something we can change in our environment? Could a trusted friend, family member or disabled peer help us? What ideas do my children have about change?
I know that there will be times when each of my children might have a need, a desire or a wish for something that lines up more with the support they can receive from a therapist than what they could get from their natural environment and support network. Just like able-bodied, neurotypical people, that’s OK. I don’t want my children to grow up with stigma around seeing helping professionals when they need help. For that reason, we keep positive relationships with therapists who visit once a year to stay known and connected to us.
We are grateful for the good people in our life, including educators and clinicians, who have always been respectful of my children. But these days my children are at the centre of all decisions about who is in their life and what support they need. I have a simple rule for myself – if my child isn’t personally invested in therapy, then I don’t believe I should be. My neurodivergent children are growing up away from early intervention therapies and we haven’t looked back.
A post script (or three)
I write about our own decision to permanently pause early intervention therapy to show people an alternative perspective, not to impose my own ideas about therapies on to you. If it doesn’t resonate, please don’t feel attacked for your decisions, that’s of course not my intention.
My perspective on early intervention therapy doesn’t mean that I don’t know what it is like to be drowning as a family, or to feel like you are unable to meet your disabled child’s needs. I have been there and revisit that place often (I just can’t write about it because it divulges too much about my children and their privacy and dignity is important). Families like ours can need a lot of support. I strongly advocate for the availability of family support programs, in-home respite and personal care, changed attitudes to disabled people and caring roles, more inclusive community events, spaces and programs, better housing and financial support for families and carers, and therapists who work with parents to understand, accommodate and meet their child’s needs. I just don’t advocate for early intervention therapy.
Oh and I don’t hate therapists. I really love many of them, including my wife who is an OT.