I was recently asked to provide my thoughts on autism parenting and my personal experiences as an ex-ASPECT parent to a group of new starters at Autism Spectrum Australia (ASPECT).
Beyond sharing my personal successes and challenges over the years, I saw this as an opportunity to talk directly to teachers and therapists and open their eyes to what all special needs parents wish they knew. It was a golden opportunity to let them know, teachers and therapists, how they can help us while also helping our kids.
While I was concerned this information was going to be old news to them (it’s certainly old news to me!) it turns out the group got a lot out of the session and went away with a new-found understanding of the unique challenges that autism parents face.
This was an autism specific presentation, however, these themes are common to all special needs families. I know this, as I straddle two special needs worlds, helping my two older spectrum kids and further assisting my son with his vision needs.
I wanted to share my thoughts here to hopefully reach more parents, carers and teachers. If the group I spoke to (a group of teachers and therapists from a special needs setting) learned something from my words, then there’s a big chance teachers from mainstream settings will get even more out of these insights.
That’s my hope, anyway!
Teachers: What Special Needs Parents Wish You Knew
Receiving a diagnosis & dealing with it is incredibly hard
I want teachers to understand the time, effort, energy and determination that goes into each and every diagnosis. It’s a long and hard road for parents that doesn’t end when the diagnosis is received. That merely heralds the beginning of another lifelong merry-go-round of challenges.
There is the chance to develop a valuable and meaningful relationship with parents of special needs students by understanding this truth – receiving a diagnosis and dealing with it is incredibly hard.
- Hard road to diagnosis. For most families, it can take months or even years to receive a diagnosis. The process usually involves multiple appointments with varied specialists, the preparation of detailed reports, watching their child undergo a myriad of tests, completing lots and lots of questionnaires and sharing private & often painful details of daily life with virtual strangers. It’s not an easy road, and parents, as well as their kids, need extra support and understanding during this time.
- Emotional rollercoaster for parents. I know this from personal experience. First, parents have to accept something might be amiss with their child, which can take a long time & involve false starts, confusion & denial. Then, when there is no denying the fact, parents need to find the determination to act on their suspicions and find the right people to help them get answers. Finally, once there is an answer (i.e. a diagnosis) parents need to pick themselves up and keep going by identifying therapies, treatments and specialists who can best help their child and their family. By the way, 12 years on and I’m still riding that emotional rollercoaster…
- Little support from family & friends. It’s a common experience for new special needs parents to feel isolated and alone. Friends and family may be well meaning but they will rarely understand what a diagnosis means for the child, their parents or the entire family. They often find it impossible to relate or understand the daily challenges of special needs parenting and may not be able to provide practical support to parents. Even worse, some may not even accept the diagnosis at all, leaving parents without any support. It can be a very confronting time.
- Accessing formal support is a challenge. It can be difficult to identify what support is available at all, let alone access any of it in the early days. Government support to help access treatment and therapies, such as the National Disability Insurance Scheme (NDIS), Helping Children With Autism package (HCWA), Better Start funding and Medicare subsidies can be challenging to navigate and successfully apply for. Then parents need to find specialists & therapists to help their child while negotiating waiting lists, identifying whether the chosen specialist is a listed provider for funding and hoping they end up being a good fit for them and their child.
- The feeling of uncertainty is overwhelming. A diagnosis brings with it an overwhelming feeling of uncertainty. Parents suddenly need to make important and informed decisions without the confidence or knowledge to make them. They may be experts in their child but they are not experts in their child’s condition. So while they are dealing with everything I’ve described above PLUS trying to hold everything together for the rest of their family, they are then expected to decide on therapy options, specialist advice, education settings and funding models. It’s a situation fraught with fear & uncertainty.
Parents will be feeling devastation, despair, confusion, anger, denial, desperation, pain and grief. They need to be supported, not judged, and even little gestures like asking how they are going, taking the time to share a kind word with them and giving them time to come to terms with their new reality will make a huge difference.
Displaying compassion, understanding and empathy towards parents in this difficult period can go a long way to securing trust on both sides. It’s also a way to ensure the needs of the student come first by helping to create a supportive environment between teacher and parent to discuss the student’s needs.
What we want to tell you every single day
There are many things we’d like to tell teachers each day but these are the ones that I want to share the most:
- We are doing the best we can – we really are. You may think we could do more or believe we are deliberately ignoring your suggestions but special needs parenting is demanding. We wake up every day wanting to do the best for our kids – never doubt that. We often have other children to parent and support too so it may be impossible for us to take on board your suggestions, however useful or practical they may be. There are always reasons behind our actions & we are always trying our best. Always.
- We need understanding & kindness. It can be a lonely & challenging life and we feel judged on all sides, for every decision we make. Sometimes our input is ignored and we feel powerless to help our kids. To you, we may appear to be demanding and pushy but we’ve probably been up since 4am, have already helped our child through several meltdowns and need you to REALLY know what may trigger them today. We are not trying to be difficult – we are trying to do our best to help you to help our child.
- We want professional advice. As our child’s teacher, we trust you and rely on you to help inform decisions about our child’s education. I know policy may prohibit you from telling us exactly what to do to move forward with our child, but we need your input to help us make the right decision. Help us make the decision to mainstream our kids or move them into a special education setting or try a new therapy. Know that we need your input to help us, help them.
- We have to balance the needs of our whole family. You will often only see me and my child, your student. But there are other members of the family to consider too. Balancing the varying needs of a special needs family is incredibly difficult. As with the first point made above, it might appear that we are not doing everything possible to help our child but we have the welfare of our entire family to think about too. Sometimes it’s impossible to choose.
What special needs parents need from you
Now, you have a better idea of what we are going through as special needs parents and are aware of what we’d like you to know, each and every day. Here are some practical ways you, as a teacher, can better help and support us, as parents.
- Love & care for our kids. It’s a huge step to place them in the care of others and some of us have had negative and painful experiences in the past. Help us feel more confident in our decision to place our kids in your care by loving and caring for them. Develop a meaningful relationship with student and parent by spending time with them and taking the time to share your experiences with us too. It will mean the world to us to know they are loved and cared for at school as well as at home.
- Get to know our kids. See them as more than their diagnosis or a sum of their learning needs. Take the time to recognise their strengths & celebrate their successes. Find out what makes them tick and what motivates them to succeed. Tease out their personality, share a joke, give them encouragement. Above all, give them every chance to show everyone what they can do. That’s what we need from you.
- Please, no judgment. We already feel judged in pretty much every area of our lives. We feel judged for our kids’ behaviour, how we react to them, where we choose to educate them, what they wear (or don’t wear), what they eat, how they interact with others, how we spend our time as a family and in our choices for treatment and therapy. Please, don’t add to that pile with further judgment at school.
- Respect our input. We may not yet be experts in or child’s diagnosis but we do know our kids best. Respect our input in learning and support meetings. Respect our input when we ask for reasonable adjustments. Respect our input when we make suggestions to better support our child. We want to help you to help them – please let us do that by listening to us and valuing our suggestions.
- We need honest & timely communication. We need to know what’s really going on, the good and the bad, so we can address issues before they take hold. Don’t sugar coat the negatives or forget to share the triumphs. We need to know what is happening and when it’s happening, not months after the fact. Support us to support our kids by keeping us informed.
How supportive special education settings can help
Supportive education environments can provide so many benefits to both the student and their parents. A real partnership between teachers and parents, based on mutual understanding and respect, can yield big dividends for life, for students and parents alike.
Here’s an example of the benefits we gained from a positive beginning to our son’s special education journey through the Royal Institute for Deaf & Blind Children (RIDBC) and ASPECT:
- We were given tools to help our son thrive. Through both settings we learned how to best help him adapt and thrive in a mainstream classroom. Without this guidance and support in the beginning we would have struggled to help him settle into school. We certainly would not have been able to have secured the help we’ve received along the way.
- We gained a better understanding of his conditions. Starting out in supportive special needs settings allowed us to see other students learn and better understand how our son could be helped too. In turn, this helped us better understand his albinism and autism and gave us a glimpse into the reasons for his actions and behaviours.
- We enjoyed a safe learning environment for our first school experience. It was as important to us as it was to our son to have a positive and safe introduction to school. Starting in a specialist special needs environment gave us the confidence to eventually make the transition to a mainstream classroom and eased us (and him!) into the education system.
- We learned how to be better advocates. Personally this is the biggest benefit I took away from our initial experiences in a special needs setting. I learned all about IEPs and learning support meetings and our rights to reasonable adjustments for our son. I discovered it was okay to ask questions and to seek meetings with the school. I was taught to stand up to the rights of my son – it’s one of the most important lessons I’ve ever taken on board.
- We joined a network of other special needs families. Prior to commencing in our special needs education setting, we didn’t know anyone else with autism or albinism. Being able to connect with other parents who understand what you are going through is very powerful. I’m so grateful to have found lifelong friends for both my son and for myself, from our time both at RIDBC and ASPECT.
- We became more confident in our parenting. There is no question about that. Receiving a diagnosis for your child rocks your confidence in many ways, but none more so than in your parenting. Traditional parenting advice goes out the window – suddenly you are faced with a situation they don’t really talk about in popular parenting books. Having teachers there to guide us and help us find our feet again as parents was so important to how we’ve gone on to parent all three of our kids.
A positive relationship between home and school can benefit everyone, in ways beyond the student and the classroom. A real partnership between teacher and parent, built on trust, honesty, compassion and understanding, can be a powerful way to instill confidence and self belief in the student, their parents and in the teacher themself.
In the end, this is what special needs parents wish you knew.