A Letter to Myself From the Other Side of My Sons' Autism Diagnoses
Today was one of the toughest days of your life. Today you found out that your beautiful boy has autism. Future me would love to go back in time to tell you how things will work out, so here goes:
The first thing you will do is blame yourself. You will spend months trying to work out where you went wrong. This was a complete waste of time and energy. The possible causes of autism vary from week to week, but one thing is for sure, it is no one’s fault. Some days you will think “why me,” but most days you will embrace what feels like chaos.
You will learn society does not value carers. You will give up your job to become a full-time carer. It is down to you to help your children achieve their best possible life when you are gone. You will struggle financially, physically and emotionally. You will have to become your child’s project manager — making phone call after call, writing letters, filling out forms, lodging appeals, keeping accurate records. In order to create change, you will have to put your family “out there” to the media, something you have no training in and that does not come naturally. You will quickly realize the system you thought was there to catch you will often work against you, and this will become a major source of stress and frustration.
The next thing you will do is look for other mums like you. You will discover Facebook is a lifesaver for people like you who feel socially isolated. You will quickly connect with other mothers and this will be your greatest source of information, comfort and reassurance. Your old friends will fall away one by one, maybe because they don’t understand your new reality. The new friends you make through autism will be there for you no matter what. They will stand beside you and hold you up when you are at your lowest. You will be accepted with all your raw emotions. You will be able to bring your children to their houses without fear of being judged. You will learn to scope a room for potential “danger” quicker than any FBI agent.
The professionals you meet in the early days will show you how to ease sensory issues, how to encourage speech, how to figure out what triggered the meltdown. You will panic when you hear about early intervention and wonder if it’s already too late. It isn’t — the brain is capable of life-long learning.
Over time, you will learn about autism just as if you were learning a new language. You will discover that sounds, smells, touch and taste are experienced differently by people with autism and this can quickly become overwhelming. Over the years, you will work hard to manage this. Harry will eventually be able to tolerate hair washing, hair cuts, tooth brushing, nail cutting and even get used to the feel of clothes.
He will show you a side of yourself you didn’t know you possessed; the ability to intuitively know how he is feeling and what he needs even when he doesn’t have the words to tell you. You will achieve this by using visual schedules, introducing one new skill at a time, breaking it into small stages and repeating them until he “gets it.” You will celebrate every small victory like you’ve won the lottery. You will meet people who will go out of their way to help you — teachers, tutors, therapists, special needs assistants, hairdressers, dentists, shop keepers — all of whom are willing to be patient with your child as he learns. You will be forever grateful to them.
Along the way, you will learn your younger child, Gavin, also has autism. You will learn every person with autism is different, just as every human is different. You will learn to be patient but relentless. You will survive with practically no sleep. There will be days when you are so exhausted and depressed you think you cannot go on. Your own health will suffer because you don’t get enough practical support. Your immune system will start to work against you. Some days will be all about physical pain. Through all of this, you will learn the true meaning of unconditional love.
Most of the time you won’t consciously think about autism because first and foremost they are your children and this is your “normal.”
You will see the true definition of courage as you watch your little boy walk into a strange environment and hold himself together, even though all his senses are being assaulted simultaneously.
Eventually you will learn to be your children’s ultimate advocate. You will learn there is no professional who can tell you more about your children than you already know. You will learn to be tenacious and unrelenting in the search for support. There will be people who will try to belittle your struggle for support, but you will not give up.
You will learn to speak plainly and clearly without using euphemisms so as not to confuse your children. You will find an amazing school in your local area, where every person your children comes into contact with values them as much as you do. You will find yourself supervising homework and remember there was a time when you didn’t know if Harry would ever be able to speak, let alone read or write.
You will understand autism is not an excuse for bad behavior. There is a world of difference between a sensory related meltdown and a tantrum. You will be confident enough to trust your own judgement on this.
You will develop the “death stare” for people who make uneducated comments. You will know hand-flapping, spinning, repeating words and phrases or noises are your child’s way of calming themselves and should never be discouraged. You will never let anyone try to force eye-contact on your child. You will know any sound is a precursor to speech and all new speech is good (even cursing). You will know all behavior is communication and with practice, some meltdowns can be intercepted and avoided.
There will be so much work to be done. You will need more support than you get but you will keep going because there is no other choice. You worst fear is dying and leaving your children behind with people who won’t accept them as they are. You will never stop trying to find new ways to teach your children to live independently and you will never stop hoping they will achieve this level of autonomy.
You can do this.
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