autism · life · Parenting

What Are You Doing…

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Having an autistic child is real folks… it’s fun and adventurous and it’s exhausting in it’s own ways.. all children come with challenges though even if they aren’t on the spectrum.. but when they are autistic there are things that we know as the parents to those amazing kids… we know how to get down and be a part of their world in a way others do not understand…

I sat there last night with McKinley and watched her scroll through my i-phone.. Nope she doesn’t talk much.. she says Mom and Dada and she points at things sometimes but my goodness she can maneuver her way through my phone apps in her sleep…. She loves the PBS kids video app, You Tube where she watches Mickey Mouse and Elmo… She also has a few sensory apps that she loves.. Yes I have tried the communication style apps and no they have not worked yet.. maybe someday I’m hopeful for this…

But bottom line is she is a pro, hands down those little fingers just spit magic as she goes through the phone, silly kid can’t keep in one place through long.. she is go-go-go and hates the advertisements on YouTube lol… she will continuously click into new videos… if you didn’t know she was a little different you would think “What on earth is that girl doing????” …

When she is focused she loses control of her tongue at times and will hang it out a little and drool, I have a very amazing collection of the hanker chief style drool bibs for girls, LOVE THEM! I also always have a Chewy Tube attached to her in case she needs it as well.. She does tend to bite at things like a wild little gal when she is over excited or when she needs it…

As I sat there I thought about how things are in general … this life we live is so different from what I thought it would be. My first child taking on the world in a way that all the other kids I have known in my life didn’t have to… I thought about her future when I’m gone again and of course that always hits me hard.. that is the only fear I have is who will care for her like I do when I’m gone… kills me daily.. would get to any parent though even if they weren’t a special needs kid… If you are doing your job as a parent right you are going to worry about your little one even with knowing God is on my side it’s hard to think about their life without you in it…..

We have a lot going on daily between the oldest having Soccer games, dance practice, school and being 10 going on 20 lol… girls today WOW! Also just us working full time and trying to balance all of McKinleys medical appointments and therapy and now her being in school herself 2 days a week and us trying to stay healthy and be sane…. it’s down right hard and I have days where I forget to shave my legs and guess what I think that is allowed at this point… being me is tough said no one ever!!!

I enjoy the little things though like the smell of rain on a hot day, or a fresh mowed lawn and the way the air smells during fall with the pumpkins all lit up…. those things I can enjoy without trying to arrange someone to do this and that to get there and for that I’m always thankful for the little things in life, even if it’s someone waving on a back road to nowhere! I enjoy the simplicity in life, sometimes it’s hard to remember to enjoy those things when you are a go-go-go kind of person…

She keeps me on my toes and herself!! She honestly doesn’t stop, Iv’e contemplated dressing her up as the energizer bunny for Halloween but Minnie Mouse will do since she does love that show… She did something pretty neat last night, picked out a Daniel Tiger night gown to wear to bed and pointed at him on the outfit and smiled… Mom was impressed and happy!! Those are magical little moments for us, other families get them more often than us and that is fine but when it happens in our house we cheer and cry and jump for joy, some people do not understand this fact… the fact that the smallest most “normal” thing may be a huge accomplishment for us.

As tired as I feel at times I would never trade a day for any other persons life… I long to be home when I’m at work… I wish for the day when I can be there for her and provide what she needs… I love this life we have and in ways it has brought us a little closer as a family…

I know I mentioned them earlier but they have been a huge help with our little gal, Chewy Tubes… Chewy Tubes- They are always attached to her, I suggest buying the attachment clip for them on amazon and having this on hand if your little one likes to either bite things, or has any kind of oral delay or issue this helps!! Also if you are trying to get them away from pacifier usage this is a key to helping there too..

Chewy Tubes for Oral Stimulation and Sensory

Every day is like a huge freaking obstacle course, from the regular grind of life to the chore of scheduling the life of a child with special needs and one without, and keeping yourself happy this is my life and sometimes it rains and the thunder rolls but like I said I wouldn’t trade you, heck no… I would love support though and I think any parent would… So with that being said I challenge you to tell a parent that you know or don’t know maybe you just see them in a store or on the street doing a mighty fine job, Tell them! Don’t think it in your head… Tell them they kick ass at parenting make them feel good because they have bad days just like you and we could all use a verbal pat on the back people! -K-

 

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3 thoughts on “What Are You Doing…

  1. I have a little energizer bunny too! Thankfully he is more aware now – before I would walk into the room to find him on top of the fridge or some other dangerous place if Ieft him alone for just a minute. So tough! We used the chewy tubes as well. His speech was very minimal at the time and he drooled a lot. Our speech therapist pointed out that he would drool when he was excited about something sensory wise – like if he saw play doh, he would get excited and start to drool. I can vouch – the chewy toys are great! And they really help build mouth muscles. My son still gets excited and drools, but I don’t notice it as often. And I think you are doing a mighty fine job, K! You are doing great with your kiddos! 🙂

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    1. Thank you Robyn!!! I love you sharing your info about your son as well, it really helps to hear from others on this level and I appreciate your responses so much!!! We are just stepping into the world of her learning to climb and I have already thought that she will be on the fridge in no time, O the joys right?!? lol, Thank you for your kindness! Take care!!! -K-

      Liked by 1 person

      1. Haha! Yes – I always thought my guy should get scored a perfect “10” on problem solving! Every time I thought I had something set up so he couldn’t get to it – he got to it. Definite strength! O the joys 🙂

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