Isn’t it unbelievable how powerful human beings can be when it comes to the people they love? This unconditional love that can’t be taught only felt, does incredible things. It consumes you to drive for knowledge, gives you vision and hope, and enables strength to use every ounce of energy your body can give…day in and day out.
The saying is true, you never know until if affects you
When my son was diagnosed with Autism Spectrum Disorder (ASD) I’ve heard of it, but I didn’t fully understand it. I never envisioned myself that one day I would be trying to read everything I could about ASD because the information is endless from news media, blogs, social media platforms, and on…and on! The day we received diagnosis, I couldn’t help myself, but cry because I feared for his future. The doctor sitting on the other end of the room was sympathetic, but couldn’t give me immediate resources to go to or use. We would have to wait a few months before entering a waiting list to use their therapy programs, however was offered a once a week 15-minute session of speech therapy. I admit, it was an awkward conversation with her as the place is known as the center who specialized in this. Thanks, but no thanks, I’ll take my $200 diagnosis elsewhere.
The power behind the screen
So I began my trip surfing miles and miles on the net searching endless information. I knew I wanted to start Applied Behavior Analysis (ABA) therapy after all the reading I did about the types of therapy. I fell upon an article of a clinic in my area who just opened a location (Score!). Here’s the thing though, my son had to get reevaluated and re-diagnosed by this doctor in order to start. Here we were, starting at day one again waiting to have the same conversation leading back to hear the same diagnosis of being on the spectrum.
So, we did, but this time it was different. The doctor, not very sympathetic, no emotions at all goes on and describes his recommendation of what I should do for my son’s capabilities. I freaked when he told me 40 hours a week was needed for ABA therapy. He saw the shock in my face and bluntly asked if I knew what ABA therapy was. I guess I didn’t do enough reading as I thought, but seriously how am I going to get my child 40 hours a week when I work full-time?!
Well he won by ensuring me with what he said next. The difference was, this doctor and his team was ready to start as long as I was ready. (News flash, of course I wasn’t ready, it’s not for me and I had to believe my son was ready) There was a waiting list for services too, but he sat there all nonchalant telling me this is what will happen, when to expect a call, where we want to be and how his team was going to help get us there.
I was so embarrassed at my reaction by judging this no emotion doctor. I was doing the exact same thing I feared people will do to my child because I know my son isn’t able to express anything. Big wake up call to myself, I had to come back and be human to realize the doctor too was “human” and he’s been doing this longer than I have so maybe he has a point.
Get back on the net and you search the crap out of it until you can’t. Find every available resource out there and reach out to them, expect your phone to blow up from all your efforts. Realize they want to help you as much as you need it, but keep in mind that a lot of the places are short staffed and there are already so many families waiting their turn so be patient. One great thing, a lot of these places who provide services will do home visits. Lord knows how chaotic it can be for my son to enter a new environment. I always prepare myself to expect the unexpected, which leads to not remember half of what was said during meetings. Then again home is my son’s safe place so if you’re child doesn’t do well with new faces, be ready for chaos too.
Find a network of individuals going through the similar scenario. I found a group on Facebook, there’s a lot of groups to join and follow. Within this group I found, I didn’t even have to engage, but read on as other parents post about struggles they have and seeking for help. Sometimes parent came on just to vent or ask questions that seemed so simple but struggled to find answers. I just kept reading along and taking in all the insights. It took me 3 months to build up the courage to post a question, I was at my wits end on trying to figure something out. There’s so many who have been playing this game a lot longer than you and are willing to help and be open.
Eventually you’ll get there
Once you learn to accept the reality, you’ll be able to welcome a whole new lifestyle. Envision where you want your child to be if the access to anything he needed was available. As cliché as it sounds, you start to remind yourself,
You’ll find a balance which may take months, sometimes even years, but you adapt because your child too is trying to adapt and it’s not easily done by them. You’ll be alone a lot, you’ll stop going places and finding time for leisure, and the only people who truly understand is the ones in your household who breathes your situation day in and day out. Your outlook on life will change, you count your blessings a little more, and you will learn to find peace.
There are great resources out there and it’s hard for them to find you or know that you need their services so go and break down walls. This isn’t easy, you have to work hard every second, but when you work and know why, you’ll see it’s worth. It doesn’t end, it doesn’t stop! It doesn’t mean you’re stuck, it doesn’t mean you suck. Heck, everyone sucks at something, but when you’re the only voice for your child or your loved one, you make it count!
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Thanks, you’re so inspiring.
Thanks Kris, I appreciate your kind words.