The A-Word: 5 Things You Probably Shouldn’t Say to an “Autism Parent” & 5 Things I Love About Being an “Autism Parent”

Wow! Seems like its been forever since I last posted anything. Or should I say it has been forever? It’s been months since I’ve written which is why I’ve chosen to cheat a little. I have recently began a social media class, one of my electives for my English degree, and one of the assignments was to write a podcast on a subject that we are passionate about and I chose to write about Autism. Autism has been a huge part of my life for the last 3 years since my youngest son was diagnosed, so it’s a subject I am very familiar with. The assignment had to be a minimum of 15 minutes meaning it is a little lengthy so we’ll jump right into it.

P.s. I’ll have another post this week with all my happenings since I last wrote.

5 Things You Not to Say to an “Autism Parent” & 5 Things I Love about being an “Autism Parent”

Hello everyone, that is out there listening today and thank you for joining me for my very first segment of The A Word. Now, before I jump into our first topic, five things you shouldn’t say to an “Autism Parent” (I’ll explain the quotations later), I should probably answer a question that I am sure many of you are thinking. Why the title The A Word?

I choose to title my podcast The A Word as an attempt to shine light on the stigma that I have come to discover is associated with the word Autism. I don’t know how many times someone has asked me in a whisper, “Does your son have autism?” as if they were asking if I sold drugs. Or the pity that comes into a person’s eyes when I say, “Yes he does have autism”. Not to mention the slight pause over the phone when I call a daycare, for example, to inquire about a spot for my son and they hear me say the word autism. I have encountered all to often people treating the word autism as if it is a bad word. Which it isn’t. Is it a word that changes your life and all those in it? Yes. But it isn’t a word that one should shy away from or whisper behind close doors.

My son was diagnosed with autism when he was two. Some say that two is a young age for such a diagnosis, but he was exhibiting some of the signs, such as lack of eye contact, not being able to use eating utensils, and the biggest sign – being nonverbal. He hadn’t at the time and still hasn’t, said a single word. He is five now and so for the last few years I have lived with the so called stigma of having a child with autism and believe me from the very beginning, (where it took THREE months of almost weekly appointments with doctors and therapists to receive an official diagnosis) to now the journey has been very long, very hard, and often very lonely.

I have noticed the decrease in invites to social events from family and friends because of my son. I have had to pass on jobs because they couldn’t accommodate my schedule or should I say my son’s schedule?. And there are times when I have neglected the needs of my oldest because I am occupied or burnt out from my youngest.  My entire world revolves around my son and there have been many many moments when I have questioned, am I doing enough? Am I enough? I say all of this to lead up to the point of this podcast – Parents of children with autism go through a lot. EVERY. SINGLE. DAY. And for this reason alone, it is important to stop and consider your words before making certain statements to a parent who is raising a child with autism. So with that being said I will finally give you the five things that I believe should not be said to an “autism parent”. Please keep in mind, that these are my personal feelings and if you do not agree with me on anything that I say, that is okay. So, let’s begin:

  1. “Autism Parent” Now the reason I use quotes around the word’s autism parent is because I really do not like that saying. I am not a parent of autism. I am a parent of a child with autism. There is a difference, to me anyway. I suppose I shouldn’t be so sensitive about being called an autism parent, but when people say that to me I feel as if they think that is all my child is. My child is not autism. My child has autism. In so many ways he just like a typical five-year-old. He loves to be outdoors, he loves playing with his brother, he has interests, likes and dislikes, he is so so much more than his diagnosis and too often people that we have encountered do not see this.
  2. “You are an angel” This is another one that sounds a little petty to be on the list and I may be the only one that feels like this, but when someone finds out that my son has autism and they respond with “oh you are an angel” or something along those lines it kind of makes me feel uncomfortable. Because at the end of the day I am no angel. I am just a mom raising my child. Would I have chosen to raise a child with autism had I the choice? No. But he was given to me and I love him and so I am doing all I can. I have had many moments where I have broken down crying, I admit I have even had moments where I have broken down. I spend most of my days feeling lost and not knowing what in the hell I am doing. When I am called an angel, I feel as if I am being put on a pedestal that I will never live up too. Furthermore, why am I an angel for my raising my youngest and not my oldest? Just because I have a child with special needs, I am not any better than any other mom.
  3. “You just need too…” First off all, no parent should tell another parent what they need to do. But when someone who has never dealt with a child with autism or any other special needs tell me what I need to do it really pisses me off. Excuse my language. I try my damn best with my son and yes he has some habits and behaviors that aren’t ideal but please keep in mind that when you tell me, or another parent, that we need to do something nine times out of ten we have already tried and it didn’t work. I don’t tell you how to raise your child and how about you don’t tell me how to raise mine.
  4. “He’ll outgrow it” You won’t believe how many times I have heard that my child will outgrow autism. Yes, there are some that believes one outgrows autism. Will my son outgrow certain behaviors he exhibits? Yes. Just as your typical child outgrows their pacifier or training wheels on their bicycle my child will outgrow certain things. But he will never, and I repeat, NEVER outgrow autism.
  5. This is for my parents of nonverbal children such as my son, the dreaded question, “Is he talking yet?” I know that family members and friends do not mean harm when they ask this question. They are genuinely curious if he is talking and excited about the possibility that he may be. I get it. But it hurts every time I have to answer this question because the answer is still the same. No, he isn’t talking. And please believe if he were, you would know because when I see you in the grocery store or speak with you on the phone my very first words would be, “Guess what? James is talking!!” So, if you have a friend of family member with a nonverbal child please stop asking this question. When their child says that first word you will know because there will be a celebration.

Now, I want to end this podcast on a positive note. I know I have spent majority of the time here speaking on how hard it is to raise a child with autism and some of the negatives that come along with it. That is not to say there is no good. Because there is plenty of good that comes with my son. I just know that in my experience, a lot of the blogs I come across makes it seem like raising a child with autism is all rainbows and unicorns. I want you parents out there to know that it is okay to not be okay. It is okay to say that I can’t do this. It is okay to cry and speak on the negative. Because it is all a part of our journey. So, like I said, to end on a positive note here are five things I love or learned about being a parent of a child with autism:

  1. Stop and take enjoyment in the simple things. One of the things my son does when are out walking is he will stop and just look at the wind blowing in the trees. I don’t know what it is that he likes but the first time he did it, I couldn’t help but think, “Wow, it’s been so long since I’ve done something so simple as enjoying the breeze in the trees.” How excited and happy he gets over the simple pleasures in life makes me appreciate them even more myself. Too often as busy adults we don’t just stop and enjoy the sight of the wind blowing the leaves, but maybe we should.
  2. Patience. I have a lot more patience since I have had my son. I have learned to stop and let things go at there own pace and that it’s okay if somethings take a little more time.
  3. I get to spend more time with my children. My oldest son was 7 when his brother was born. I hate to admit but I spent a lot of his younger years at work. I would work doubles, holidays, it was a lot. But I was doing what I had to do to make ends meet. However, I have been unable to do that with my youngest. I have had to make it work on a part time job and his disability check. And in some ways it sucks but 80% of me enjoys being able to spend more time at home. For the last few years, most nights I have been home for dinner. I am off most weekends and we can go out and do things as a family. I am a part of my sons’ lives, not just the woman that pays the bills and buy the school clothes and Christmas presents. But I am THERE!
  4. I have met a lot of nice people on my journey. When I attend events such as sensory friendly nights that many places have for people with disabilities, or sitting in the doctor’s office, or even at the park I run into other parents that are going through what I am. I have learned many tips, been given leads to resources, or just had nice conversation with people I may not have met or spoken to if we didn’t have in common the fact that our kids have a disability.
  5. My Son. Autism and all. I love my baby. I watch him sleep sometimes and all I can think of is how much I love him. Does he get on my nerves sometimes? Yes, so does his brother. Is it hard? Yes again. But he with every hug he gives, every smile he sends my way, every milestone he hits it makes it all worth it. And although I wouldn’t have chosen to raise a child with autism, I don’t think I would change it.

                So folks, that is all that I have for you today. Again I thank you for joining me and I have you have enjoyed and maybe even learned a little something from The A Word. I look forward to next time!

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