When starting out on this journey, finding out about Autism and what to do about it, even before we got the diagnosis, this is what I wish I had known or had the strength and wisdom to have done. Perhaps this information would be helpful to others just beginning their journey.
I wish, first off, that I knew better than to just take a Doctor’s word for anything. They are not saints. They are human and make mistakes. Some terrible ones. We have brilliant doctors now, but even still, I research myself even after asking all the questions because I know better now. For example:
“Boys take longer, they will talk in time, don’t worry”
“He’s hitting his developmental milestones right at the last minute mark, and he’s ahead in some areas! Don’t worry”
Those two remarks and discussions that were dismissed so easily by our pediatrician at the time, lost us so much time and prolonged the unease I felt that there was something going on. Did I believe it was Autism?? Heck no! Doc said no, so no. Right? Wrong. So so so WRONG! But at the time I wanted to believe it was ok, I was a scared new momma, I trusted in my gut that my perfect baby was just that. And really, he was…just a different kind of perfect. And that’s ok too. But there was something…I should have pursued that something.
I wish I had asked and pushed and switched doctor’s. Asked for second opinions, didn’t trust those reassuring validations around me from people who also wanted to believe all was well. Told myself, ‘let’s just to make sure,’ to get me to go through with it all, rather than allow myself to just accept and sit tight.
I wish more than anything, I had known that although it would take a year to get a diagnosis, getting appointments for assessments. Getting an appointment wether for private or public assessments, is difficult. I could have done something in the meantime. ABA was not available to me until I had a diagnosis of ASD, but I could have started with the most important therapies. Speech and Language Pathology and Occupational Therapy. Fortunately, with my oldest (whom we began our journey with, but ended with his diagnosis last), we did that. I put him into speech because a child that is not speaking does not need a diagnosis to get speech therapy. We had him in Occupational Therapy because he was diagnosed with the often co-morbid Sensory Processing Disorder. We thought it stopped there, with SPD, but learned much later that SPD does not present itself on it’s own. It comes with something. Something like Autism, or ADHD, or some other diagnosis.
I thought I could do it all. What they do not tell you about a major diagnosis like ASD is how it will affect your relationships with just about everyone. Friends, family, and especially, your spouse. I have known of divorces happening because this life is not easy, and not everyone climbs on board. Often one parent throws themselves into it head first, absorbing every article and book and trying everything they hear about. The other often goes through denial. This is not a gender problem, but rather, tends to be a personality type, in my humble opinion. However, if the relationship with your spouse is strong to start, I believe that time and persistence and patience, will find everyone in the same book, almost always on the same page, eventually. This is just personal experience, I can not speak for all dynamic relationships but it is my hope that those that can, will fight to make it work and support each other as best they can.
Early intervention is so heavily emphasized by everyone once a diagnosis is achieved. Unfortunately, it is rare if you can get it in any timely manner and you find yourself panicking over time and minutes ticking by. Like I said above, concentrate on what you CAN get. Get speech if needed, get the OT to come work with your kid, or Physical Therapy or tutor for special needs. Start the IEP process at your school and get services for your kiddo in the classroom, yes, even without a diagnosis. They will find a way with your persistence and advocacy, to bring supportive services. If not, move. Move to an area that will. It is so important.
Lastly. But possibly most importantly…find your village! I wish I had found mine before years of isolation ate me alive, ate our family alive. But find it I have and building it up I am. Find online groups, facebook has awesome groups local and national and even international, to join. Just knowing you are not alone, no matter what is being thrown at you is invaluable. Someone out there has had experience in the same things and will give you a virtual hug and let you know it will be ok. One day, you will be that person for someone else as well!
Live every day doing what a dear “friend” of a leading mom’s group has said…”Find the Joy”. Even if it’s tiny, even if it’s buried beneath a day of poop smearing or eloping, or head banging, self injury or refusal of everything. Find the one piece of joy and hold it tight. Remember it is these joys that will get us through the moments of hardship. And that finding the joy will get easier and suddenly the bad days will be just that. A bad day. Not a dark journey down the rabbit hole we often find ourselves stuck in.
Last point. That rabbit hole. It is always there. Waiting for you to fall through it and travel the crazy journey Alice did, only made just for you. Remember another parent is out there, another carer. Go online, go to a local group meetup (when we can again) and connect. Connect even if you are as introverted as I am and hate it until it’s over. Because after…you will discover that somehow that rabbit hole is no longer your home and you are living above it. That you will be brought out of it every time you slip and that we are the village that can keep you out of it.
autstanding 