Remember

There is a play group I go to with my Little One every Friday morning. Based in a special place, with special people who have done much for my older son, and our family in the past. Six or seven children with special needs gather there each week with their parents. The children begin by playing with the carefully chosen toys and activities, and an early childhood teacher and an aide work the room, engaging the children as their parents watch closely and learn. They speak with the parents like friends as they ask about their week, picking up on things uttered, and things left unsaid.

My autistic toddler, the youngest in the group by nearly a year, holds a crayon and giggles as he watches the teacher making funny noises to emphasise her scribbles on the page in front of him. Just like that, he grips the crayon, and does his own scribble for the first time, and I smile in excitement and disbelief. The teacher asks about our week, and laughs at the matter of fact way in which I describe my children's rather unusual antics that week. She sees through my joking tone, she sees that my eyes wander away as I speak, she hears my voice catch a little, and she knows that it's been a rough week. She knows that I am tired, and probably feigning enthusiasm this morning for my son's sake, but she doesn't push. She respects that I know what I'm doing, and what I need to do, but also recognises sometimes my children and I just need to coast for a couple of days. We chat about The Little One's eating, sleeping, communication and playing that week. There have been some small breakthroughs I realise as I'm speaking, and the teacher also points out some things in The Little One's play that he's not done there before. There is progress there. Steady progress, despite me feeling like I've not done enough with him in the chaos of our week.

I sit with my Little One for the story and for music time, and not for the first time I think to myself that finally I know what it's like to be at playgroup with a child who wants to be there. I see my small son giggle, flap and spin with other kids who do the same. He plays roughly with the other kids and their parents are okay with it because their kids are doing the same thing. The only girl in the group chooses him to dance with to a song, and their giggles are contagious. He touches the hair of the boy next to him, and is swatted away, but later, when he runs to the door the same little boy wraps an arm around him and guides him back to the group. He has friends. He fits in, and he's happy; so happy.  

Don't look back.

I can't help it. As I sit with My Little One while we sing, and he giggles with the little boy next to him I remember Bubbly at this age, just before his second birthday. I remember, and I feel guilty for not being so content and happy being his mother back then, for not knowing what he needed, or being able to provide it.  

Those early years with my Bubbly One were lost to such loneliness, fear and guilt. If I could go back and hang out with the "me" of those days I would give her a hug, probably make her cry, and tell her that she's doing the best she can, and that her best IS good enough. I would tell her that her gut is right, but that it is not her fault. I would also tell her to cut herself some slack, because that time of denial and grief meant that she was ready to hit the ground running when the paediatrician confirmed what she had known deep down for so long. 

I would tell her that she is not alone. I would tell her that her God is with her through each uncertain day and that she is right to cling to Him. He will show His hand on her life over and over again, no matter how hard things get. She will draw strength from Him and His people.

I would tell her that there is a world with people who understand, and who are living it. That they will embrace her, and she, them and that she will love their kids as they love her anxious, hyperactive little boy. I might even tell her that her child will always be the one lagging behind, that she will watch as his peers go on to mainstream schools, that she will see them speaking, and doing what her son still cannot- and I will also tell her that the time will come where she doesn't care about that anymore. She will see him happy and confident in his own skin, belonging and valued, with friends of his own, and nothing will seem lacking in his life, as different as it is.

I would tell her that every single part of this journey that she is walking is for a reason, and though she may not see it right now, what she's learning in the darkness will help others on the same path.

I would tell her that those years of study were not wasted, that those years in management were preparation for her most important job, and that the training she worked so hard at would give her the strength and the knowledge she would need to advocate for her child and for others one day. I would tell her that her life means something, and that whether she is making money or not, she is doing what is invaluable for her family.

I would tell her that she is worth loving, and that she should be treasured by the one who vowed to do so. 

I would tell her that what she knows as "just stress" is actually anxiety, and that she doesn't have to be bound by that anymore. I would tell her that she is stronger than she knows, and that her hope is not for nothing; that though her child may stay "severe" he will never stop learning, and progressing and making her proud. I would tell her that the day will come when he will make a joke with her, that he will try to trick her, and when he will argue with her- and that she will fail miserably when she tries to be firm with him, because is so damn proud of him for expressing what he wants so confidently. 

I would tell her that a future awaits her which she will feel excited about, and that she will make a difference to many just like her. I would tell her that it's okay to look back, and to remember, because where she has been will help her to understand and support others on the same path without judgement or disdain. Where she has been will help her to understand herself, and her children; and as she remembers she will realise that it's okay to delight in today, and to look forward to tomorrow.

Guest Post by Sarah Jane: If You Read One Thing Today, Let This Be it...

Please note that this is a guest post written by a long-time follower of my blog and Autism Bubble Facebook page. "Sarah Jane" is an Australian mother of two. Her eight year old is autistic and this post is a beautiful letter she drafted to her loved ones to share the news of her second child's diagnosis. I hope you appreciate it as much as I did. -The Autism Bubble   

If you read one thing today, let this be it.... 

This is Christoph*. He is four next weekend. Today I received a phone call, and a few hours later a printed letter that confirmed what has long been known; that Christoph is on the Autism Spectrum. The letter clearly states that Christoph meets the DSM-5 criteria for Autism Spectrum Disorder (ASD). Now, before any of you post anything to say ‘I’m sorry’ or ‘I’m sure he’s not that bad’ or ‘maybe they got it wrong’ or any other well meaning, yet clearly misguided comment,please read on and take in the rest of what I am about to say.

In 2012 Christoph was identified as having a sensory processing disorder and today was diagnosed as ASD ‘severity level Moderate’ (level2). This means it is anticipated that he needs ongoing support of a “substantial” nature. This hasn’t changed since yesterday, and has been the case with Christoph for a long time. The difference, however, is that now he has access to services he was unable to access before. In Australia we are blessed with an early intervention program for ASD and today I signed paperwork to gain him access to this program. This program means Christoph can access evidence based practice services such as Occupational and Speech therapy and Psychological services, up to a set amount, to be used before he turns seven.

I signed another form allowing Early Childhood Australia to be notified about Christoph so that the process can start to see if he can gain access to additional support through school to give him the best chance at receiving an equal education. I was given yet another book on autism (one I haven’t read!)and the lovely support of our local Autism Advisor staff.

On top of Christoph getting a better chance in life because of this diagnosis he will grow up knowing he has autism. He will grow up knowing it’s okay, and he will be taught the skills by myself, family, friends and professionals to accept himself for who he is, yet strive to be even better. He WILL develop a healthy sense of self and identity that includes his autism because it is a part of him. It doesn’t define WHO he is, but it does define PART of what his behaviour or mannerisms are as a result of his neurology and subsequent cognitions.

Christoph will continue to have intensive sensory based interventions at home including the use of our sensory based play area, cloud swing, hammocks and regular runs and walks. He will continue to use visual supports, scripts, and social stories to develop his independence in brushing his teeth, dressing and other daily tasks. He will continue to have (for the most part) my patience as he takes six months to adjust to the idea of new shoes or a change in structure or routine. Christoph will continue to sleep with his companion dog Crystal who has helped him develop his speech and assisted him to learn skills in calming, and self-regulation. He will continue to have ‘thinking time’ when he behaves inappropriately and he will continue to be given the tools he needs during this time to assist him to calm and refocus. He will continue to be taught to think about thinking, about self-awareness and mindfulness. He will continue to be encouraged to try a new food that, on the first occasion makes him gag. He will continue to be rewarded with stickers when he tries something new, regulates his behaviour or any other number or reward worthy acts. He will continue to learn social skills through daily interactions where he is explicitly taught the ‘rules’ that so many others his age can infer. Christoph will continue to grow. He will continue to develop. He will continue to have support to achieve his potential.

The diagnostic pathway is long (Christoph was initially referred at 20 months old) and for over two years he has seen countless professionals and had multiple assessments for different aspects of his behaviour. It is exhausting, but it has been worth it. With the additional support of some brilliant professionals we are thankful to have up here, I am sure methods of teaching and accommodating Christoph can continue to be refined and improved.

I contemplated a facebook post for some time before I wrote this and my reason for deciding to do it is simple. AWARENESS. I am NOT posting this for ‘sympathy’ because, frankly, there is NO need for it. This is a CELEBRATION of acknowledging a part of Christoph, as you would acknowledge part of someone’s heritage or culture.

I want to thank all of those around me, especially my mum,as well as the rest of my family and friends that have supported me on this journey, attended appointments with me, or learnt along the way with me. You all mean the world to me and I truly thank you for what you have contributed for Christoph. 

This post is not designed for any other purpose than to create a bit of awareness and let people know we got there. After years of appointments, we got there. We advocated for Christoph, we repeated countless times his ‘limitations’ and we ached nearly every time. BUT we got there, and now,now Christoph can soar. So please don’t just scroll past because it makes you uncomfortable to think of someone with special needs. Don’t discount the hard work that got us to this point today.

Gain from this a little bit of awareness, understanding, or something. Share the story with a friend, speak about autism with a colleague. Raise a little bit of awareness yourself.Because the more people that know about autism- and foster acceptance, the easier it will be for Christoph to grow up knowing it really is okay. Let us embrace this ‘label’ and normalise it, come out to the world and de-stigmatise autism.For the sake of those with autism both children and adults alike.

Let us accept neurodiversity.

Thank you

XXXXXX

*Names have been changed