In honor of Autism Acceptance Month, An Interview With My Amazing Son
Let's start off by saying how wonderful it is that April is now Autism Acceptance Month and no longer Autism Awareness Month. With one-in-every-sixty-eight children diagnosed on the autism spectrum (2016 stats), we're all aware of it, but now it's time for us to be educated and accept this is a large part of the future generation. We have a responsibility to these children and all children to teach them how to thrive and have a better understanding of each other. I know my family personally holds kindness and acceptance very high on the list of concepts we began teaching our children very early on. Can you imagine what kind of a world we would be living in if we all just strived to do those two things more?!
My son was diagnosed on the autism spectrum when he was three, in 2011. This was one of the most difficult times my family had ever been though. We were told he was low-functioning and would never be in mainstream school or be able to live without our help. At this time he did not talk, answer to his name, or look at us when we spoke to him. I kid you not, that at one point I thought he was blind, deaf, and mute! If you have followed my blog since the beginning, then you have read the stories I've shared over the years of our journey. Maybe it was denial, or maybe it was me not being able to accept the diagnosis we were just given, but I just began reading & reading books, articles, and online journals. I also attended the Autism One conference, and started down a bio-medial path.
We found out in 2013 (due to a blood draw to see if he needed the MMR booster for Kindergarten), that he had 5x the MMR amount needed - already in his system! His body never broke down this shot in the four years it had been since he was given the first dose, and he had high levels of mercury in blood stream. High-levels as in...mercury poisoning! We began cleaning that out under the supervision of our doctor, using vitamins and supplements...and oh boy, was the die off that year horrible! But soon after, he began speaking more clearly and making eye-contact more often. Years (and many thousands of dollars) later, my son is very high-functioning and attends school in a mainstream class with a one-on-one aide.
I don't want to get into the vaccination conversation too much, as it is very personal and people have very strong opinions about it. But, I think it's important to point out that the MMR vaccination no longer has mercury in it, and I do not believe that is how my son got autism. He was born with it, but his body cannot break down what most of us take as over-the-counter meds and even something in our food like gluten. My kids are both up-to-date with vaccinations, but I spaced them out giving only one shot every 6 months (some spaced-out 12 months as they got older). I also do a titer or blood draw prior to all booster shots, to see if my kids even needed said booster shot, and in most cases they did not! It's costly, but in my gut, this is what I know is right for our family and our journey.
In honor of Autism Acceptance Month, I wanted to do a little interview with my boy. I do not claim to know anything about anyone else's journey other than ours! Our journey has been a long one, filled with hard work, endless hours of therapies (ST, DT, OT, PT), annual blood draws, and tweaks in diet and vitamins.
I give you, an interview with my son:
Hi baby love! I'm going to ask you a few questions about autism, and I would love for you to answer them in your own opinion. I know that you do not represent all autistic kids, just yourself. You ready bud? Yep!
What is autism? I think its a personality trait, I think its just not a really big deal. But I have to live with it so, who cares. ;)
Is it difficult to live with autism? Kinda... I have to be gluten-free, my instinct behavior is crazy, and that's all there is!
What do you mean, your "instinct behavior is crazy"? My instinct behavior is different then most people. Its crazy because its unexpected and sometimes people are surprised of it. But its natural to me to act this way.
Do kids treat you differently then other friends at school? Lucky me, nope! I have many friends at school and I don't get made fun of very often, but it has happened twice this year.
What would you like people, who don't know anything about autism, to know about it? Just because we are different, that doesn't mean we don't have feelings. Me personally, I am able to speak and type and am very smart at a lot of school subjects like math and science! But I'm not the best person at everything, I don't have a lot of expected reactions, I have a aid at school, (I'm in 3rd grade!), I am not organized and I forget things like my coat or folder a lot, and its hard for me to socialize.
What is good about having your type of autism? I don't have much of the normal autism traits, I used to when i was younger, But I (kind of) got better.
I didn't even say my first real words until I was over 4 years old! I have to do a lot of different therapies, and my mom makes me get a blood draw every year. I need so much vitamins and supplements to help me get better. I even had to get shots 2-3 times a week for 2 years to get my b12! Now it's a liquid thank god!
It's also good because I see things different. Like numbers, music, science, and math. I can memorize a lot, even 120 digits of pi! I also think its good because I like being by myself.
What is bad about having autism, in your opinion? That's hard thinking. Hmmm..maybe the fact that I'm gluten free? Also, when I have issues at school I have to talk to MANY teachers about it. My mom gets an update everyday on my behavior and I don't think the other kids have to do that. I guess it's annoying that I get observed so much. I like having an aid, so I have someone on my side who can help me, but I'm different from everyone else. I think that's all.
Do you have a lot of friends that you talk to and play with everyday? Umm, I'm not a big fan of talking and playing with friends. But I do have one friend that I played with a lot earlier this year, but we don't hang out so much anymore. Remember, with my differences like bad eye contact and unexpected or crazy behavior, it's hard to make friends in school. I forget to work on the relationship. Which leads us to the next question.
Are you lonely? Not much. At home I have a mom and a dad and a sister to keep from being lonely. I don't have to work on those relationships, those are permanent. Imagine how lucky I am! At school I am not lonely because I don't notice not being included most times. Example, I sat at a lunch table today with about 10 kids and I didn't talk to anyone so I don't know who I was sitting next to. I forgot to look at them or talk with them but that doesn't mean I don't want to be their friend. I don't really feel lonely when I'm around other friends.
OK, transcribing that back made me cry! So, as you can see, my little man is super self-aware and now I'm aware a few tweaks that need to be made for the next school year. He is ever-changing and evolving the older he gets. Man, this mom job is a hard one!
We wrote today's post in hopes to help others be more aware of how my child with autism thinks and maybe that will help just one person accept another person for their differences! Spread kindness like confetti, you guys; kindness and the high-road is always a good look!
My son wanted me to point out that it always helps to donate. Our favorite organization is Generation Rescue because they help cover medial expenses to families. We know how hard it is with insurance not covering any of the bio-medical costs. My son's doctor is $500 per hour, so our annual costs can can sometimes be thousands out-of-pocket. But it is so worth it, as we have made such great strides!
Stay positive, fellow autism parents. It's such a difficult world, but one that I'm proud to be part of. There are days that will gut you, and days where hearing a sound that vaguely resembles the word you want your kid to say is like music to your ears! It truly is my life mission to have both my children become fully functioning adults. We will get there, one day at a time. Happy Autism Acceptance Month! xo
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