Hello Dear One, who is facing a new unknown –
I too have had to stare down that tunnel of the fear of the unknown. I understand looking for answers about “How did this happen, and why? Did I do something wrong? Is this a disease? If so, is there a cure? This is so unfair! What did I do to “deserve” this?! How will we ever be able to have a “normal” life?!”. Then, after some time passed (this is different for everyone. For me, I think it lasted about a month, but I have met some people who get stuck there for years), I finally came to a point where I said to myself, “What’s the point in using up energy in agonizing about this?! That person (or persons) is (are) here with me, and I love them. What’s done, is done. Maybe there wasn’t actually ANYTHING done to make any of us this way, and I am not so sure that it’s all bad. Heck, how do I even know that the way that they are could have, or even should have, been avoided?”
Maybe I should just figure out how to make the best of what we deal with, get help with the really rough stuff (like speech, and sensory issues). Make things more tolerable for their “ways”, and try to “put myself in their shoes” more (like my mom always tried to teach me). Besides, I see a lot of their daddy, and myself, in them, and we survived (with some scars, but we survived). I remember people saying things to me (when I was a kid and teenager), things that sounded hauntingly similar to what has been said to, or about, my own kids… Hmmm….. That makes me wonder…” That day was one of the best days in the history of our family life! That was the day I turned a corner in the ways that I thought of Autism AND ADHD!
Has everything been easy from that point on? No. Were my new thought patterns, and attitude, a cure-all for all the challenges? No. Did I still make mistakes in how I dealt with my loved ones, and other people? Yes, yes I did. Were they still the same person I knew, before I knew their diagnosis? Well, of course! This, in my opinion, is the most important thing for anyone that is facing any type of newer diagnosis to remember! This beautifully unique person in front of you, is still the same person you have known all along! Their diagnosis did not change them. It just gives you a place to start, in being able to find the right tools to begin to help them! Good for you, and for them! 🙂
What did change, were my ways of dealing with my loved ones (ie., no more trying to force them to change into someone they were not, no trying to “fix” them, etc.), and other people’s attitudes toward them. Admittedly, I became less patient with unsolicited advice from those who did not even begin to really know us. I became less apologetic to strangers, unless I could see that in doing so, it would bring more patience toward my loved ones! I became an advocate for them, and myself (and have tried to teach them to do that for themselves, over the years). I also started giving them more choices, so they could feel like they had more control over their own life (I know I appreciate it when I have choices). I also took it upon myself to do some of the things that they did, to see if I could see what they might be getting out of that particular thing, or behavior (this is where there were some real breakthroughs in our relationships with each other came in).
Also, I was tired of all the so-called “experts” (a majority of which had no loved ones (nor they) that were Autistic, or ADHD). Tired of being told what my loved ones, or I, could/should or couldn’t/shouldn’t do, by the “experts”! Tired of people telling me to just have “faith” (the ever-elusive “faith” word…) and to not speak negatively (which really meant they just did not want to hear about any of our challenges, or ways that they might be helpful to us), and they would be “cured/healed” like their kid was (when it was even many times clear that this was not the case, after being with them for any amount of time)! Oh, please, just, don’t, even… I also knew, logically, if there were kids this way, there HAD to be adults this way! Wouldn’t they be the real experts? What did they have to say? Surely there were many that made it to adulthood, and have had to figure things out also (after all, I made it to my forties before finally being diagnosed with ADHD)! How can I find out their thoughts and experiences?
**What I Ended Up Actually DOING**
Enter the internet, circa 2005. I was able to find some lists and chat rooms that were run by autistic adults. I also found a couple of email lists to get on, to read some of their creative writings. When I found these, I was so excited, and encouraged!
Through engaging with these autistic adults, I found out a lot of the things that really hurt, and helped, them during their lifetimes so far (of which I found out that many of my own instincts were correct). I also learned about many of the cues I was receiving from my loved ones, as to what might be going on with them, so that I could begin to do my own troubleshooting. There is nothing better than learning from the source!
What really shocked me later, was to find out how many of these adults that wrote so eloquently, were also essentially nonverbal! Always remember that nonverbal, or low verbal, does not mean that person does not understand what you are saying! Be aware of your words, and how they may be affecting your loved one!
What if you know that you have already done some damage, or made big mistakes with your loved one? Apologize to them in the best way that they communicate with you, and now that you know, be aware enough to catch yourself, and stop! Do not beat yourself up about the past, or get depressed about it. That does not do you, or your loved one, any good. Move forward with your new knowledge as a new tool to help you from now on.
**Some Parting Thoughts and Resources, from Me to You**
I will leave you with some suggestions of books you can read (I wish I had these at the BEGINNING of our journey), plus a few of my favorite online resources for learning to look at these differences in a more positive light. Remember, if you buy a kindle edition you can read the across your devices with the free Kindle reader app for your device, anywhere, and they often cost less than the print copies (plus the added bonus of fewer books around the house! My husband appreciates that part. Ha ha!) Also, many times your library may have the book, an e-book version, or even an audiobook version available for you to use.
First, for Autism Spectrum reading:
Positive Blogs and Websites for Autism helps:
John Elder Robison Resigns his Role with Autism Speaks (worth reading), John Elder Robison’s Site, A Free Book on Transitioning from Youth to Adulthood to Download from ASAN, ASAN ~ Autistic Self Advocacy Network, The Mighty (A place where real people share their real stories), Autistic not Weird – Insight from a Former Teacher with Asperger Syndrome (one of my personal favorites)
Secondly, for ADHD and ADHD-friendly reading:
Blogs and Websites for ADHD and ADHD-friendly helps:
Dr. Hallowell’s Blog, and Dr. Hallowell’s Website, A Slob Comes Clean Website (she is not formally diagnosed, but believe me she is my soul mate sister in this regard…), ADDitude Magazine’s Website (A HUGE amount of helps and resources), The Mighty (A place where real people share their real stories), Understood – for learning & attention issues (a great toolbox for parents to personalize and understand their child)
Here are also a few I am looking forward to reading in the very near future (they are next on my reading/listening list), which were recommended to me by others! 🙂
Finally, I would like to encourage you. Do not waste the time you have with your loved one in this life by trying to “fix” them, or in searching for some kind of “cure”. They are “wired differently”, and you will never be able to fully change that. Learn about some of their “unique ways”, and learn to celebrate those differences! Yet, do not quit in trying to troubleshoot and figure out ways to help them with their most debilitating challenges. They need you. They need your love, help, creativity, and guidance.
Is there anything you want to see me talk about from our life? Do you need to find any particular resources? Anything else you want to ask? Please feel free to contact me on the form below, or email me at firstname.lastname@example.org ~ Thanks!
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