The Funny Side of Autism - "Don’t Give Up!”
I'm sitting here thinking about all of the things to write about that would leave an impact on whoever is reading my thoughts today. I've struggled with this one because I am so passionate about Autism and wanting to help all of those that are affected by it, that it sometimes becomes overwhelming. Today I think I’ll just write about what’s in my heart and see what happens.
To my fellow mommies, daddies and families that autism has impacted, please don't give up. I know that it is hard and sometimes you will feel like you're all on your own but please know you're not.
I have been in your shoes, with a child that has to go to bed at midnight because if he didn't he'd be up at 3.00 a.m. like clockwork and not go back sleep till 7.00 a.m. when it's time to get up. I've been through the, ‘I will only eat chicken nuggets and french fries for the first four years of my life’ phase and ‘Do not even approach me with any textured food, it's not happening’.
I've been through the, ‘I do not like the texture of my clothes so I will not wear anything, ever!’
I've been through the child who has such a high threshold to pain that he broke his arm and I didn't know till the next day! He didn't cry or scream, he just couldn't raise his arm to sign for cheese balls.
Imagine going to the hospital to have a cast placed on, but on the drive home he has pulled the entire cast off!!! I returned to the hospital to have it put back on, but did a u-turn in the parking lot because I knew the second one would meet the same fate.
I've been through the stares from people when he makes strange noises or is loud when we're in public. I've been through the chauffeur stage where I've driven him from Occupational therapy to Physiotherapy to Speech therapy and then turned around the next day to do it all over again.
I've taken him to school, knowing he’s different. He doesn't talk, he won't stay in his seat, he doesn't understand what is being said to him. I've been through receiving a letter in the mail saying your child in no longer enrolled in this school because of his autism. I've been through the fight for services in school and I've been through all the tears that are possible in the name of support for your child. I've been through it all and I have survived……..and so will you.
To say my life with a child with autism is easy would be a lie, it's hard as heck, but is there a day that I wouldn't do it all over again? No way! Through all the hard times there have also been very special time that have out weighed all of the tears. Although I didn't get much sleep for the first five years of his life, I now have a teen who I have to fight to get up in the morning.
Although chicken nuggets and fries are still on the menu he will also eat a variety of other things that I never thought he would. He also wears any type of clothing now and leaves most of the stripping till he gets home.
Now he has many expressions to let me know when he's in pain. He also lets me know when he's pissed and not impressed with following my directions. In the early years sitting and following directions were not on his "to do" list, but now days he's proud to sit and do lessons for longer than me!
Now there are fewer stares and more “Hey Ciré” or “Look at my bie Ciré”, I think my teen has more friends then me. And because of all the chauffeuring when he was little my teen now thinks he can drive (ha ha).
The life that you and I will lead will be a little different, our child will look the same as everyone else’s but the key difference is "developmentally" they will differ and so the skin they're in will have expectations in school but the neurological disorder will set them back.
It's something that many will forget a lot of the time when they are working with our children because they look "okay", and they may “understand” some of the thing we are saying. But really, understanding that Autism is under the surface of one’s skin and will remain a part of that person’s life forever really takes a special knowledge and passion that may sometimes fall short in the real world.
Many may not understand why you fight for specific services for your child and others may turn a blind eye, but I know WHY you fight, you fight because you want your child to have a chance………a chance for independence, a chance to access friends, a chance to access college, a chance to access the world and live a life of value. I know what goes through your mind every day, “will my child be able to go to a birthday party by himself and not be picked on”, “will my child have a best friend or even a significant other”, “will my child ever be able to leave home or will I have to take care of them for the rest of my life”. The thoughts that go through your mind everyday are not relevant to many others because they will never have to think about them, but I know that you do. This is why you fight for better education, more services and therapies, because your child is so worth it.
So mommies, daddies and loved ones of these very special children don’t give up. You were given this gift from God because YOU are special to. The fight for special education that may fall short, special therapies that may be limited and insurance coverage that are zero to none will only give you the tools you need to make sure that at the end of it all you are setting your child up for success. The journey may be hard but it is SO worth it!
For more stories follow my blog at www.thefunnysideofautism.org