10 Things Autism Parent Want You To Know

 

 

1. The use of the 'R word' and High Functioning/Low Functioning.
This should go without saying. The use of the 'R word' should of been left in the 90's along with crimped hair. It's both outdated and offensive. Too commonly it's used as a term to demean another person. Just no. My least favorite question to be asked is, "Is she low functioning or high functioning?". Guys, it's never okay to label a person by how 'able' someone is. The spectrum is so vast, either way you look at it saying this is diminishing a person's struggles or under estimates a person's abilities. 

2. We celebrate the small victories.
Hearing your child's first words, watching your child try a new food, and hearing them call you mom, are all to be expected from your average neuro-typical child. These are things most parents don't think twice about. When you have a child on the spectrum, you might have to fight for years for a few words- if any. Some of us will never hear our child say, "I love you." or "Good night." It's hard. People one the spectrum deal with sensory sensitives of all kinds. Something as simple as trying a new food can be extremely overwhelming and feel damn near impossible. Things like learning to use a straw or zipping up jacket may seem like a small feat, but in realilty these are the things we as parents live for. 

3. Non-verbal does NOT mean stupid. 
The inability to speak is not a direct reflection of someone's intellect. People are quick to assume that a nonspeaking person is 'low functioning'. 25%-30% of people on the spectrum are non-verbal. There are so many ways someone who is nonspeaking can communicate and express themselves. Things like body language, eye contact, tone, and facial expression are all ways someone use to express how they're feeling. Sign language is popular for children and adults, writing, typing, apps on electronic devices, and social stories are great for communication. Or try a smile, the universal way to show kindness. 

4. I am an unapologetic helicopter mom. 
Please don't tell me to, "Relax! and to come sit down. Your child will be fine." I'm sorry my child has a tendency to wonder, and has zero fear of falling. While everything may appear seemingly under control, I know at any minute that can change. Fenced in parks > Park with wooded areas.

5. What do we want? Sleep!
Being a parent is hard work. Being a special needs parent requires more. Most parent's are excited for the day when their LO starts to sleep through the night. For some this day seems like it'll never come. Sleep problems are normal for those on the spectrum. Unfortunately, so is wondering and dealing with anxiety. As a parent you always have to keep one eye open and getting up through out the night. I'm currently on year 5 of no sleep. Thank God for Coffee!

6. Autism does not have a look.
I will say this, I understand that when someone says this, they think they are actually complimenting you. They think they comment is a nice way to say that your child doesn't look like they have a 'developmental disorder'. Please don't undermined a person's Autism by claiming they seem 'normal' the ten minutes you've been around them. This diminishes a person's struggle.

7. Stop staring a silently judging. It's more obvious you're doing it than you think. 
Stop. Think. Before you start to pass judgment on the 6 year old sitting on the floor of the grocery store having a fit, and more so their parent, stop. You're out to eat with your family and spot a child lost in their IPAD and you think how inappropriate it is to be playing with electronics at dinner. Think. How likely is it that you're actually seeing a child have a meltdown (NOT to be confused with a tantrum.)? Very likely. This a hard for the parent as well as the child. Every day we must be the buffer for our child, in hopes of avoiding meltdowns and overwhelming situations. Everyday we are doing the best we can just as you are. Offer a helping a hand, or even just a smile. Please keep all head shakes and peircing stares to yourself, thank you!

8. Children With Autism become adults with Autism.
There is no cure for Autism, but Early intervention and various therapies can provide astounding success. These services are detrimental for our children as well as our adults within the Autism community. At 21 a person 'ages out' of these state programs. What's next? Most people on the spectrum do not live independently. Where do these people go? Without programs these skills they've spent years acquiring can begin to fade. Regression is real. The worst part is what happens to my child when I no longer can care for them? Who will care for my child? Some will end up in residential programs to cater to their individual needs. While some end up in a facility. So why is awareness and acceptance important? Autism is a life long disorder. My child will one day be an adult, and I one day will not be here to be her buffer from all things chaotic. I hope everyday for acceptence and understanding from others. 

9. There is no set age for toilet training. 
Often times we may find ourselves catching someone noticing our child is not potty trained. Or receive unsolicited advice on how they are old enough to use the bathroom on their own. This is really frustrating. I can't tell you how many times someone suggested this or that. When they fully didn't understand the situation for what it was. She was scared, going was usually painful, and it just wasn't her time. Some people on the spectrum need assistance, end of story. 

10. Love needs no words. 
People often wonder if someone doesn't say 'I love you', then how do you receive it? Hugs are great, but can be limited. What it comes down to is affection is shown in many forms. My daughter's favorite way to show affection is through pressing up against me. Or anyone she likes in fact. She does this with her feet, her body, her head, pretty much anyway she can find a way. So if my child is sitting dangerously close to you and begins to push. She's not being aggressive she likes you. 

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