It's been over a year since Ellis has been diagnosed with autism and to this day I learn things daily. I am constantly reminded that my son is absolutely amazing but also the world is still behind on acceptance and inclusion. With these new findings and worries, I have changed not only my personal parenting style and self but also in my career as a teacher. It's amazing how one diagnosis can change everything.
An Autism Diagnosis is Just the First Step
Maybe you just had a child diagnosed with disability and you're thinking, "this is not how I pictured my life", well join the club! I have talked and listened to many parents who were and still are in the same boat as you! It's truly a life alerting challenge, but it is so worth it. However, being worth it doesn't make it less hard. Autism or any diagnosis does not come with a handbook.
So, I thought I would share 13 rules I live by daily when it comes to our son and our less then perfect lives. These things may differ from yours or they may relate. For some of you, there maybe a new lesson or a "I didn't realize" moment that may make you rethink your next interaction with a person with autism or any other disability.
The 13 Parenting Principles with a Child Diagnosed with Autism
Here we go!
Talk About Autism. Look, being silent really is not the way to go. A disability, especially an invisible one, should not be silent. It should be talked and discussed with children and adults. Many of us just stare and wonder in our own thoughts. When I see this actions from other adults I usually say, "he has autism" then I try to educated just a little. With other children it's hard because most children do not understand which is fine, but it's up to us to education. However, be prepared for different responses like "I am so sorry" to which I reply, "Why?". The point is that I am talking about it and making it known that this stuff exists and it needs to be accepted and awareness should be spread. Most importantly, kindness to all needs to be spread.
Don't let anyone underestimate your child's intelligence. Look, I use to do this with my own child which is shocking but I did. Before Ellis all the children I knew could talk, so I knew what they knew. Now, I have to use the other senses to make sense of intellect, problems, issues, and positives. Just because a child cannot verbally say what he or she is thinking doesn't mean they are unintelligent. Ellis may be one of the smartest 3 year olds I have ever met, but he has a difficult time doing the everyday things neurotypical kids do but that does not define his intelligence.
Always have appropriate snacks on hand. It's no secret that children with autism have difficulties with different foods. A lot of the time it's a texture or sensory issue and not the actual food when it comes to eating the rainbow. Therefore, snacks are a must. I have an emergency snack bag in the car at all times. I also call ahead to most places to make sure they have his core food groups or I simply tell them my situation and ask to bring my own food in. Point of this tip is to always keep snacks handy.
Keep the iPad near at all times and keep the charger close by. Look, if you are a limited technology to an hour person then I applaud you. I get it, it's not great for the eyes, kids become zombies, etc. I totally get it and I wanted to be that parent, but for me and my family Ellis + iPad= desculation and regulation. Therefore, I keep the iPad handy and charged because in social settings we need this to function. When I need to get something done, we need the iPad, when we wake up in a horrible mood and won't stop crying, then we need the iPad. Don't EVER judge a parent when it comes to technology because you have no idea how they use it. My parenting styles and thoughts changed after Ellis, so I will never ever judge a parent and their technology rules again.
Have coffee. Always. That's it. Sleep fluctuates.
Ask all the questions at the doctor's office. I am one of those parents doctors look at with a slight head tilt because I ask every single question. I am that annoying parent and I actually apologize for it because I know I am annoying, but if I don't ask then who will? I need to know everything there is to know on how to better serve my son because I am his mother and that is what I want and need to do. It's more then a job, it's a passion.
Be picky with your babysitter. I do not trust many people with Ellis simply because he is nonverbal and it's very hard for me to relax knowing that his needs may not be met, so for the longest time we did not go out. In the last two years I have gotten better and I trust more people however they are usually relatives and close friends. I suggest the same for you because autistic individuals don't always verbalize what they need and want or they just straight up do it themselves without having a "fear" factor in them such as elopement, playing with dangerous items, ingesting things that may look like food, etc. Point is to make sure you really trust and know the person babysitting your child.
Be prepared to get "the looks". Ah the looks. I see parents all the time degrading the looks and honestly I cannot do that because I have done and still do the looks. Here me out though because for me and my looks they aren't negative. My looks are curiousity and wondering is your son like my son? Those are the looks on my end and then I ask, "Can we be friends?". So if I were you I would not always take the looks negatively and maybe even look back. I have noticed if I look back and am greeted with a smile, then those looks are mutual. However, if I am greeted with a quick turn or a nose up then I know that those are the negative looks that we all hear about. Those looks are a waste of time and if you're thinking awful thoughts about my child or my parenting then you can just walk the other way. Like I said, before I judged, but now that I am living it I get it and those looks are not worth my time because one day you will understand it and if you never do then I feel sorry that you can not or will not be open to experiencing the beauty in all people. So, next time you get the look think about that.
Be okay with the bad days. This is my husband speaking here because he is the optimist of the family. I have recently been reading Gabby Berstein's books and I have to say that her teachings are really starting to trickle into my system. We make our happiness and that includes that bad, so start embracing those bad days as learning experiences and use breath work and meditation to help ease. I am currently stepping into these teachings and I am excited for what the future holds with this.
Don't do it alone. As mothers, I truly think we think that we have to do it alone or it doesn't get done and that simply is not true. I tried and I burnt out really quickly, so I enlisted in some help even though I was nervous I would burden others. Fact: I never burdened anyone as long as we don't take it for granite.
Always have a plan B. Oh for the love of meltdowns...have a plan B. Plan B could be packing a different change of clothes, the iPad, taking a walk when you wanted to go swimming, or going down the water slide even though you swear you wouldn't. Always have a backup plan because moods and attitudes can change quickly.
2 hours of sleep is better then none. Let it be known that children with autism hate sleep and apparently so do their mothers and fathers.....
5am is the new 10am :) I was never a late sleeper but I was never this early, however, my productivity rate has increased since waking up consistently at 5am. I encourage you to try new things, get chores done, or just spend quality time with kiddos because 5am is the new 10am.
I hope these 13 pieces of advice help you in some way. As a parent, and a parent of a special needs child, I love blog posts that give me tricks, tips, and a sense of humor because who would we be without a sense of humor?
Xo,
Erica
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