I'm doing this post again, just in a different form. This post is for our church family and our friends in Washington. For all of those who have been with us through this diagnosis and the effects and tolls it's taken on us personally and our children and who are still with us on each step we take to rehabilitate the boys. I would love to let you guys know how it is to have kiddos like this. Try to explain in a way that is easier to understand, you hear Autism and you know that it's a disorder that alot of kids suffer from. It's one thing to know what it is and to know how it effects Josh, I and our family as a whole and so many families with kids effected by Autism and Autism spectrum disorders.
First place to start......What is Autism?
Autism is a form of a brain damage, no one knows what causes it and no knows why it's becoming more and more common. There are several speculations of what causes it but nothing concrete. Plus knowing what causes it isn't really going to change the fact these kids have it. While knowing is a step to reducing the amount of kids that have it, it will never stop all of it.
Autism is a form a brain damage that effects the part of the brain that controls a childs social and emotional development. It's usually effects other area's of development to but this is the major part of it.
Now that you know what it is.........How does it effect the Hodges family and families like ours?
Imagine right now that your child, if you have one or a sibling develop typically. You see smile, they hit all of there milestones, sitting up, crawling, even talking. Then all of a sudden they start loosing all of it, or start loosing everything they learned gradually. Mainly words, looking at you or hugging you, forms of emotion, all gone in the blink of an eye.
Look at your child and think about what you would do or how you would feel if they just stopped talking, I know you think it's annoying sometimes, but think of how you would feel if they stopped saying "Mommy, Daddy " I love you". Think about if you went to hug them and they didn't hug you back. Think about not having this and still having to take care of them everyday and not getting those little things you look forward too. Think about them not being able to really look at you for longer then 2 seconds or looking at you at all.
Now we hit the social/ emotional piece every parent with a typically developing child get every day. Imagine 2 to 3 years like this.
The second part that effects the siblings, playing!!!!Now look at how your typically developing son or daughter feel, again if you have one. You can imagine how this is for your brothers or sisters. It even effects Mom and Dad but not nearly as bad. Again you see the same pattern. Your son, daughter or sibling play with toy cars, dolls, play catch like every other child, then all of a sudden it's gone.
They no longer play with the cars, but line them up, or spin them in a circle. They no longer play with there dolls and there siblings no longer exist to them. They don't play with them, if there siblings or even Mom and Dad try to play with them, they either move away or scream or sometimes not even recognize your there. Now imagine the social / emotion piece with this.
Now that I've covered the Imaginary play..... Yes theres more, if these two were not enough.
The third part of this that effects the whole family and those out in public.
Again think about your child, look at them and think of all the places you take them. Autistic kids much like the characteristics I've listed above do this normally too, to start..... You can take them in a store, the coo, play, or point to the toys on the shelf, maybe even saying the word in the appropriate context. ( Ball, to a ball on the shelf.)
Now imagine going into a store and just by walking into this store your kid starts screaming and crying. Having a temper tantrum. Now imagine the embarrassment, judgment and harsh words from those people around you. Or imagine that there repetitive behavior that is okay at home is demonstrated at the store. Maybe there thing is putting there hands in front of there face in a weird way while humming. Now you have this in the store, anywhere you try to go you get this. Sometimes worse in certain stores due to the lights, the amount of people that are there, the noise from the intercoms or even the smells. Imagine the people walking by thinking you just have a spoiled rotten child, not understanding it's not your fault or theirs. Now put in the fact that you have no choice you have to go... Or that it gets so bad it now effects everything you do, going to church, spending time with your husband or wife, because you have to stop trips out during the day and wait til they come home. Think about how isolated you feel, if your a stay at home Mom this isolation is worse. If you work this stress becomes overwhelming.
Now I've hit the aspect so many people very often take for granted, just going out to the store.Now the forth way it effects families, but definitely not the last, but the last I will cover for now.... Damage of personal property and physical injury either to self or caregiver and siblings.
Again we go back to looking at your typically developing child, they change and if the above changes is not enough. You have the destruction of personal property and hurting those around them. Your child before this change didn't break things on purpose or near as often, they didn't hurt you on a regular basis, these were minor behaviors you occasionally saw.
Now all of a sudden they are throwing toys at windows and breaking them, they are bitting chairs often stripping the wood off of them. They are breacking toys, staining carpet by peeing on it or destroying dry wall by smearing poop. They are pulling there dresser draws out and dumping there cloths or pulling the nursery decor off the wall you put up when you were pregnant, that you put up so carefully. Imagine how hard this is, you try to discipline them and it makes it worse til you understand why they do it. Imagine your grandmothers prized china getting broke. Now think of the cost. Now not only has this become an emotional burden, problem or distress, but it's become a finical one too.
Now the physical piece. Your child that before never hurt you on purpose, melts, screams and cries. They bite you, hit you or kick you when they have a melt. Again you try to discipline for this, but it makes it worse. Now as a parent or sibling or caregiver you feel personally attacked. You not only feel emotionally disconnected from your child but now you feel physically disconnected from your child. Taking regular injury anytime something for your child is too much, and it's not even your fault or theirs. It's just the Autism. Now imagine your kid when they get stressed or upset biting themselves or banging there head on the wall or floor imagine the concern as a parent of them hurting themselves very badly.
This is definitely not the last thing families like ours go through, I could go into so much more. But these are the basics that most parents don't think about and take for granted. Often our friends and families around us don't understand.
A few more I won't get into detail about to think about would be- Therapy's and doctor bills
- The constant negative reviews, teacher meetings and doctors feed back of your child's condition.
- The sacrifices the typically developing kids make, because there siblings have Autism.
And if again the above wasn't overwhelming for you there is so much more.
This is what my husband Josh, my typically developing kids Elijah and Ellie and I as a Mom, Jasmine go through every day.
I write this to help all our friends and family understand how hard this is for us... It's hard for those around us to support what they don't know. We want to help all of you guys understand so we won't be as alone in this. We need your guys's support in anyway it can be given and appreciate all the help and prayers thus far that has been given. Thank you for being there and if you read this, thank you for taking the time out of your day just to read this. It means so much to us. Thank you again and hope this helps
Sincerely
The Hodges and many other families out there like us.
(Please keep in mind there are higher functioning kids out there, but alot of the above is still part of daily lives for those who have these kids too.)