Living with a Child with Disabilities

 

People wonder why I’ve become so disconnected. Or why I seem stressed out. How I “don’t work” yet seem to always be with excuse to stay in. They even wonder why I have avoided specific groups of people.

Well, here it is. I home school, cook, clean, train our puppy, take my kids to appointments and activities, I also have a blog I post to regularly, and a freebie page I offer, because to me-much has been given to me, so I should share that with others. It is my way of giving back even though right now I don’t get much personal contact outside my home or go out much.

Then, when no one is watching, I handle break downs, screaming fits, sensory issues, work with speech delays, explain to my children why even though a toy hasn’t been played with in hours it can’t be moved, potty train a child who after a year still doesn’t get it, try to decipher what is wanted with a few grunts or whines, and that is all with just one child. We aren’t even covering the fact I have two other children who don’t necessarily require, but would like the same amount of personal time put in with them.

It isn’t easy to go out with a child who doesn’t understand crowds, or can’t interact with his peers the way they interact with each other. It isn’t cut and dry taking a child out in public who does well often, and melts down just as much-if not while out, then when we get home. It isn’t a piece of cake to try and join a group and have them judge you because your child has what they call “behavior issues” when really it’s a disconnect in understanding right from wrong-or even sensory at times- and I’m doing the best I can.

There are those I don’t wish to be disconnected to-and I try not to be-but we all have lives and some have more obstacles than others. I work hard on a daily basis to reach out to people, whether they respond or not. Face it-it didn’t take long to become “disconnected” when I am home all day, almost every day, and when I needed my so-called friends most they scorned me-and more importantly-they scorned MY SON.

On to avoiding specific groups-I have learned you are who you hang out with, whether you intend to be that way or not, eventually you will reflect who you are with most often. When I see people who once claimed to be friends hanging out with people who have no problem talking trash about their family, let alone their friends, when they weren’t around-it bothers me. I don’t want to associate with that. When it is okay for one friend to scorn another and those that hang out with them don’t stand up for the one they are judging-I have a problem with that. Especially when they knew what was going on all along.

Lets not even touch the fact I was willing to overlook a multitude of past wrong doings that to me were the past and didn’t matter, but they couldn’t even take pity on a boy with learning disabilities and insulted me as a parent while attacking my child. Yes, he has issues-deal with it. He’s getting the help he needs and while I’m dealing with his ups and downs and getting him help-I am doing it alone because he was an inconvenience to people I once believed were my friends. It is not only easier, but better for me to focus on my son more than what my so-called friends are say about me when they think I won’t find out.  He is more important than any “petty” friendship.

 

I don’t want to discredit the friends I do have-I have some amazing friends, and even though we can’t talk all the time, and some have no idea what I am truly going through, I know they love me and vise versa. It isn’t all bad. And I would urge those who assume I’ve become “anti-social” to consider that I am not in fact anti-social, but have decided to find friends who will love me and my children through thick and thin opposed to those who see me struggle and assume I’m a bad parent because of it.

They say in hard times you find out who your real friends are. I have to say I was pretty surprised about who a few of them were, but also found they were the ones I should have relied on in the first place and I am proud to call them “friend.” I don’t need to be a social bee or little-miss-popularity to be rich. And I am truly rich. To the true friends out there-I love you and thank you for all you do for us. The texts, occasional visits, the understanding and occasional nights out. You are the best friends a girl could ask for!

The whole point of this is, it isn’t easy to live with a child who has disabilities. It is even harder to handle people talking trash about you as a parent, or worse, your child. It is also something I wouldn’t trade for the world. I love my son to no end-he is the apple of my eye. But don’t jump to conclusions when a parent has a child with disabilities that they are going out of their way to be “anti-social”  or rude. Don’t assume we prefer staying in or staying within our families opposed to meeting new people or doing new things.  Don’t blame our parenting for the issues our child faces-we didn’t give him this handicap-he was born with it.

Instead-send that text message or email you’ve thought about sending, it will brighten our day. Call and see how we’re doing-and don’t get offended if we choose not to answer or text in reply instead. Chances are our child is screaming or will if we get on the phone.  Ask to come over, or just drop by and visit. Ask us about our child, try to understand what is going on so when you see our child “act out” or express himself in the one way he knows how, you’ll get it and it won’t be so “annoying” anymore-because you took the time to understand.  Send that note you’ve been meaning to write. Make us a meal once in a while-not because we need you to, but because it reminds us that we aren’t in this alone.

There are a million ways you can show support to a family with a child who has a disability. It doesn’t even matter what the disability is-they all come with their difficulties. But remember-we love our child, we do what we feel is best to help our child and also keep him safe and free of stress, sometimes to our own demise. But we would not, will not, trade it for anything in in the world because,  this child, is our heart and soul.  Yes, having a child with a disability changes a family’s life-but I would like to believe for the better. We will come out stronger, happier, and knowing who our true friends are. No guessing involved. We are the rich ones.

 

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s