As a child of three children, one of the most important thing to me is their overall health. Emotional, physical, mental and spiritual strength is something I have spent years trying to maintain and develop. Not only in myself, but also in my minions. Also being a mom of a child with Autism, I feel the issue of physical health has been one of the most stressful aspects of having a child on the spectrum….and believe it or not, it is NOT because of my child’s needs or issues in general. Although challenging for sure, the poop journals, dietary tracking, medical fighting for tests, symptoms themselves etc…the most challenging aspect for me has always been (and still is) FINDING medical professionals who are not only well trained in the field of special needs, including Autism, but who actually care enough to dig past the symptoms to a root cause. For those of you unaware, an autism diagnosis is simply a diagnosis of a set of common symptoms. Many kids have various issues in addition to it. Not every medical issue is autism related so this is why I think it is so important for medical professionals to take more of an overall unified healthcare approach to medical care. Right now, my biggest referral service is Facebook, but I decided to branch out and try again with RIPIN this month. #lol
This morning I reflected on my own childhood and remember the days when my doctor actually made home visits to my house. I know…I know…how old ARE you!? I’m younger than 41 and I will leave it at that…hahaha But, yes. I grew up during a time when my pediatrician was not only my doctor but also more like family. He could tell if I was losing a little too much weight just by looking at me that is how close patients were to their doctors back then (or least it was in my case). Even though I do not expect the home visits anymore, because in our day and age that would be kind of, well, creepy…I do still expect that level of care and concern. (I actually remember crying when I found out I was too old to continue with my beloved doctor because I was turning 17 and I trusted him so much.)
Before you peg me as a whining Autism cure fanatic I, like any loving new mom, read all of the “What to expect when expecting” books, followed all the medical “recommendations,” and stayed on their vaccine schedules as I was told to do. However, after being in and out of the hospital in the first 2 years of my son’s life with multiple “bug” diagnoses and random fever reducer medicines given for chronic high fevers after vaccines, and several misdiagnoses, the damage of the “specialist” approach to medical care hurt my son in the end and left me protecting my other two children from medical downfalls like a mother lioness in the wilderness…endlessly researching and studying online. I have researched so much on google, that I should probably work there in their analytical research department.
My point? Not sure there is one. This is not one of my comedic posts. But, I guess my message is simply this. As great as it is that medical professionals now study their “specialties” like the heart, the kidney, neurology etc. in depth, I also think that it is important for medical professionals to understand and remember that although the human body is made up of many parts, it functions as a whole unit, and so should our medical care management. Fighting several different “specialists” when your life is on the line does nothing to maintain good health.
My journey with medicine and Autism has been LONG (14 years to be exact) and maybe one day I will share it, but right now, I just hope and pray that one day it is easier for Autistic parents to find well trained, AFFORDABLE, primary care physicians and specialists for our minions. This does not mean no medical professionals like this exist. There just isn’t a really good comprehensive way to get that information for where I live. I found a dentist recently with that knowledge and did not even need to sedate my son for care, and trust me, that was a shocker. The weight that lifted off our lives is hard to explain. At least for his dental care, and I would like to see more of that in medical care for our children.
Perhaps if more doctors functioned like my said dentist (especially in Rhode Island), kids on the spectrum (as well as all of our kids for that matter) will have less misdiagnosed illnesses and overall better health. Especially against those illnesses or issues simply found from “persistent momma bears” like myself who go to five different doctors just to simple, curable situations. That happened to me actually where my son’s impacted colon was dismissed as “incurable autistic ‘stimming’, urge fighting, and simple constipation” for YEARS until a simple x-ray I asked for was finally done. I still shudder at the thought of how long he must have been uncomfortable with me shoving fiber into him. Not sure how it is in other states, but since I live in RI (happily so), my dream is to one day not have to travel to other states like MA or CT for medical care. It’s just a dream….but sometimes I have good ones. Besides, with God, all things are possible, right?
Each day as I face the wonderful world of special needs parenting, there comes a time when I need strength and guidance myself. Many ask where my inner drive to do, speak, help and love comes from. I wish I could claim to be some sort of amazing person without bias or anger etc…but that would be a lie. My inner strength, focus and direction comes from my relationship with God. I know people hear that religious jargon a lot, but I honestly and truly mean it. Sometimes, I have to pull away to a personal place and re-center myself so that I do not get filled with all the negativity around me. I am not immune to the things happening in the world, I just will not allow it to consume me, steal my joy, or manipulate me. Granted, there are days when I don’t listen to God or get angry with Him (just like any other relationship in life), but overall, He is the only one I can truly trust to look out for my personal well being without personal gain. Of course, when I don’t listen, I usually have to re-align myself quickly again since, well, a mess in my life usually ensues as a warning.. But, for the most part, I do my best to listen so that I can make it day to day without too much chaos created by my own will.
That being said, my Autistic son, who for the sake of privacy I will call “Joseph,” loves chicken nuggets. It is one of his favorite staple foods. For other parents with children on the spectrum, I am sure you can relate to this fascination with certain foods alongside his obsession with ketchup.*lolThis is how this page received it’s name. Whenever God reveals something to me either in my personal meditations or bible study, they tend to serve like special little nuggets that keep me going and fuel my spiritual body with the energy needed to keep moving. Raising both an autistic child as well as two “neurotypical” children has it’s own unique set of challenges. I usually journal or talk my family’s ears off, but I decided to share them with you fine people. Because, well, why not?
I mean, don’t get me wrong, coffee is also an awesome motivator for me in the morning, but these little private revelations tend to last longer with greater benefits. As I wrote the title, I also realized it contains the word “Special.” This also goes great with my website’s focus “Perfectly Special.” Like how God did that? *lol…Not only are our beautiful children “Perfectly Special” just the way they are, but so are we as special needs parents in the eyes of God. We need our “ketchup fix” too.
So sit back, take a chill pill, grab your coffee, or put on your nature sounds (whatever floats your boat) and take a minute to eat a special nugget for your day. (They will be placed under the “Special Nuggets” page here on the site. However, whether you eat here or somewhere else, just make sure to eat! We all need to in order to survive.
I am proud to be a mixed American. This character is based on myself and I will never apologize for being who I am. Why? Because I am Perfectly Special just the way God created me to be.
If there is one thing us “Cranstonites” can agree on, it is that we have one of the best districts in the state of RI with some of the most fantastic, gifted, teachers and elementary school children (if I do say so myself*lol). We love our schools, educators and kids! However, I am sure we can also agree that keeping cool in this summer-like heat improves focus, retention and test scores. When a classroom is hotter than a heated sauna, no one is productive; teachers or students. Children with asthma are placed in a dangerous situation, other children are at danger of developing heat stroke, and well, I just feel sorry for the teachers/educators. Ever wonder why buses run for free when the weather gets too hot, or why the elderly are encouraged to stay indoors and take extra care of themselves? Well, there you go! Common sense at work is a beautiful thing.
Why are you writing this article Mrs. Roach? Well, thank you so much for asking! Would you like to hear it? Here it goes…After dropping my own kids off in the morning in my air conditioned car and then leaving my air conditioned house to pick them up after school, the heat hit me like a ball of smoke from an exploding oven when I decided to walk instead to get them that afternoon.( I live close to the school). As I arrived to pick up my two boys from their wonderful, hardworking school, I arrived just in time to wait 5 minutes or so for the release bell to ring. While waiting, I was naturally concerned when I noticed a classroom of children also waiting with their teacher already dripping in sweat. (literally.) I couldn’t help but feel sorry for the children and educators being forced to work and learn under such conditions. That being said, all blame aside, whether it is due to financial mismanagement or lack of resources etc., I just really hope something is done about that issue for our children soon! Especially since mine suffer from asthma. Yet, whining is not in my DNA. So I came up with 4 great ways to beat the heat in school. I hope I see some of these in effect so I can at least smile as my boys come towards me beaming in sweat after school.
- Make drinking fun! (Theirs not yours.) – I have seen tons of memes about teachers and wine which, I totally get just being a mother of three, but I am actually talking about hydration of our kiddies here. The schools have been excellent with letting our kids go to school with water bottles and allowing them to keep them at their desks. This is a blessing on hot days like today. It gives the kids necessary hydration and parents like myself peace of mind. Some advice parents? Freeze them! Whether you use cool animal shaped bottles, insulated bottles, character bottles or just regular store bought bottles, freeze ’em and have fun with it!. That way, the water is always nice, cold, and refreshing. If your kids need thawed water for the morning commute, take them out (the water bottles not your children) 45 minutes or so before you leave. By the time they get to school it should begin to melt. Towards the end of their first class lesson, it should be completely thawed in the heat. You can also empty out half of the water bottle before you freeze it and then refill the rest in the morning. Do whatever works for you. My kids have actually made a game of it. They put their water bottles out before their morning shower and guess whose ice will melt first. So far the daily scores are 3 to 1…Be creative and have fun with it.
- “Cold Rewards” System – This one is for teachers of course. Positive reinforcement is required in every school I am sure, and being a mom of a child on the autism spectrum, I have to come up with lots of “off the cuff” reinforcements on a daily basis. So, I thought of a few reinforcers for educators. I call it the “Cold Rewards” system which is basically rewarding kids with something fun and COLD. “Got that question right? Here’s an ice pack!” Are you blessed with a great class day full of sweating obedient children? “Sprinkler reward at recess,” or “water balloon fights at gym!” Did that C student of yours just volunteer to lead the story reading and make you happier than a Patriots fan seeing Tom Brady entered back into the football season? Here’s your reward: “The fan is pointed directly at you, my star student, for two whole minutes! Woohoo!” Goodness. I have tons of ideas like this. But I will stop here. Be creative teachers! Your there regardless. May as well make it fun!
- Mini handheld fans please! – For some reason, students are not allowed to bring mini, handheld, battery operated fans to school. (Like the ones you see at Walmart or the dollar tree). I think that rule should change. If safety is a concern or kids being disruptive with them in class is a concern, I do have an easy solution for that. Would you like to know what it is? It exists in every mall, store, district office, home, and car. It’s called air conditioning. GET IT!
4. Listen. This one is meant to be more of a preventative measure. But, this is the best way to prevent the heat from hurting our little ones. Listen to the parents and educators requesting relief from the scorching heat. Listen to the voters & parents who voted in favor of the schools/libraries renovation fund in the hopes they would be purchased as part of said renovations. Listen to the kids if they say they are lightheaded or dizzy, believe them…or if an asthmatic is coughing uncontrollably, take necessary precautions. Help them with the inhaler. Trust me, as a person who has been studying and teaching behavior modification for 12 years, a child’s complaints are not always a “task escape” mechanism. But then again, if it is in this scenario, can you blame them?
Do I have all the answers? Of course not. If I did, would I be freezing water bottles? But, I still have a voice and hope in our school district. I am also extremely grateful for our educators and the fact there are only a few more weeks left of September. But, let’s continue to show our love and support of our schools, educators and children. These hot months are not going away. We will most likely face this issue again in the beginning and end of each school year(especially if we have unexpected snow days this winter). So, let’s increase focus, productivity and overall moral! Parents & teachers, perhaps we can do something? Administration, well, get freakin’ air conditioning…or give them yours. (whichever works and is most cost-effective for you).
That is all.
Ani was tragically taken from her parents this week, on March 26th,2015, in a horrific traffic accident involving a public RIPTA bus in Providence, RI. She was only 9 years old. Friends, family, and those who may not know them personally but care about their loss, have sponsored a FundMe page in the hopes of helping her parents cope with this unexpected tragedy. Nothing will ever bring back their daughter or take away their pain, but this is our way of showing them love and support. So, please, take a moment to help them by following the link below.
The fact that a school board meeting was needed on this issue is insane. The complaining parent and school officials should be ashamed of themselves for teaching that form of ignorance to children. This child is not the problem. In my opinion, it is people like this that are. smh…so sad. View here: A very special Athlete
This video from the http://blog.theautismsite.com/ is extremely encouraging. My son is not yet in highschool, but to see a child on the spectrum operate with such great independence and self-expression is really encouraging to see. Autism is a spectrum and each child’s interests and overall abilities vary from Aspergers syndrome all the way to Severe and Profound Autism, from verbal speech to being completely non-verbal…but one thing remains the same. Our ASD kids bring a great gift to this world with their lives. Way to go Erika!!!