Me and Jacob

Me and Jacob

Monday, January 20, 2014

The Lonely Road

Let me just start off by saying that this is not a post to complain about my life with Jacob. To be able to share with you what's on my heart, I have to give you a little insight into my daily frustrations and then I will make my point...

We have good days and bad days with Jacob. Some days he seems very aware of everything around him, he's talking more and smiling more and seems to be, in his own way, independent. Then there are the bad days...

For the last 3 months Jacob has consistently been waking up between 3:30 and 4:30 a.m.. He hasn't slept passed 4:30 in I don't know how long. He won't go back to sleep for anything. We've tried melatonin, Benedryl and other natural remedies and nothing is working. Erick and I are sleep deprived but we're trying to stay calm and positive. It's HARD!!!!

Jacob obsesses over things. Lately he continues to open and shut doors throughout the house constantly, it drives us crazy! He gets hung up on words and won't quit saying them. Right now he keeps saying "shut-up" and we can't get him to stop. He's been rocking again all the time and that noise that it makes when he's rocking in the recliner is starting to grate on my nerves. He's been obsessing over a picture that we have of him and our neighbor RJ. He's Jacob's biggest buddy, which is really sweet. However, he carries this picture around and talks to it, sleeps with it and completely obsesses over it. All these things are cute for the first hour and then they are annoying.

Jacob has been demanding stuff lately. Screaming at me, demanding me to get him things. He's been kicking and screaming when he doesn't get his way. He's also been slightly abusive to me and Caleb.

Jacob has been resisting everything!! Going to the bathroom, eating, getting dressed, getting on the bus, going to sleep or staying asleep I should say...these are just to name a few.

Many times, now, I do get some love in return. Jacob will hug me and ask me to kiss his cheek and he says "I love you mom." I remember not too long ago that I didn't ever get anything in return. Those were the hard days. Giving everything you had to offer to your child, them resisting it all and then getting nothing in return is a hard pill to swallow.

Most of the time I have to feed Jacob. Not because he can't physically feed himself but I have to feed him so that he at least gets something healthy in his body.

He's 7 1/2 years old and I assume that other 7 1/2 year olds bathe themselves. Jacob doesn't, I bathe him just like I did when he was 2 years old. I brush his teeth and I give him his medicine. Most 7 1/2 year olds can probably dress themselves. Jacob's getting close but I still have to dress him and put his shoes on. Most 7 1/2 year old probably don't need any assistants in the bathroom, again, not the case for Jacob.

I know some of you are reading this and thinking that it sounds like raising your typical's not anything like raising your typical child. I have a typical child so I can say with full confidence that it's NOTHING like raising a typical child. Imagine the thing that annoys you about your kid the most, multiply it by 10 and then add it to every single second of every single day and then imagine no type of discipline strategy working.

This is just the tip of the iceberg compared to some people. Some people have children that are way more severe than Jacob. Some people are going on YEARS of sleep deprivation. Some of them are bathing and dressing their 30 year old and spoon feeding them. Some people have no relationship with their child. At least Jacob does play and laugh with us. Some people have medical bills stacked to the ceiling of things that they can't pay for. Some people are raising a child with multiple disabilities, or multiple children with disabilities. How do they do it? I sit here and think that Erick and I have it bad, and compared to most, we do. But compared to many other's? We have it easy. How do they do it? How do they live every single day and not lose their minds? I've only had 3 months of sleep deprivation but what about the people that have 13 year olds that don't ever sleep. I'm talking about years upon years of not getting the correct sleep.

I've seen/heard about 5 stories in the last year about mother's who have murdered their sons that have autism. Most of these little boys look to be around the same age as Jacob. Most people probably think they are horrible horrible people and while I tend to lean that way, I can't help but think how easy it would be to go down that road. If I didn't have Christ, my husband, my parents, my church and my friends to lean on, then I would probably go down that road too. I can see where it would be easy if I didn't have the support that I have.

Special needs is lonely, draining and discouraging. I woke up this morning, heavy hearted for the families that have it worse than me and that have been at it longer than me. I want them to have joy, hope and peace. I know that Near His Heart is only one night, but it's something that I can do to give these families a brief moment of rest and enjoyment. Something so simple can go such a long way when you are struggling to find joy.

Mom's are already too hard on themselves. Mom's with children with special needs are even worse on themselves. The looks and the stares that we get from the outside world are the worst because they have no idea what it's like to walk in our shoes. Today, I'm praying for all the mom's out there with special needs children. I pray that they can find comfort, that they can find hope and peace. I wish they could all come to Near His Heart!! If Near His Heart only reaches 1 person then it is totally worth it to me. To give one mom hope and peace would mean the world to me!

No comments:

Post a Comment