whatisnormalyou

I’m exhausted, but let me explain. I’m not physically tired, but I’m mentally and emotionally worn out.

Today was the last full day of school before the Thanksgiving break for Alex. I woke the kids up the this morning, got my daughter dressed. The second I went to get Alex dressed, all hell broke loose.

Jaz had found that one of her coloring books that had a small dent on the cover. I’m talking minuscule, but the size doesn’t matter, it’s the fact that to her, it’s ruined. She immediately went to the door and holding it to the door because that’s her way of telling me that she wants a new one. Now.

Now, because she’s whining and yelling, Alex has shut himself away in my bedroom closet, hitting himself and screaming, as a way to drown her out. I can’t let him do that, so I have to go to him and try to get him to stop, without getting injured myself. Needless to say, school is out. If scientists could work on that cloning thing, that’d be great.

In order to gain any semblance of calm, I had to remove the book from her sight and hide it so she could focus on something else. Don’t get me wrong, she’s still going to the door and saying ‘Later,’ every 5 seconds, in case I’ve forgotten somehow, but at least she is no longer whining. Alex is still in the closet, but no longer hitting himself. Me? I’m exhausted.

This disorder is exhausting. I don’t think it needs to be said, but I’m going to say it anyway. I love my kids. Of course I do. I hate this disorder; this disability. It has my young adults trapped forever as 3 year olds. They will get physically older, physically bigger, but they will never mature mentally. I should be able to enjoy my 40s. I should be able to work. I should be able to have date nights with my husband. I don’t get to have any of those things because I’m expected to keep the kids with me until I die.

Don’t misunderstand me. I understand that parenting requires a huge sacrifice. Parents of neurotypical children are done having to be home all the time when their kids are teens. My children are 20, and there’s no end in sight for me. I feel like I’ve sacrificed so much, and the thing is, Autism doesn’t care in the slightest. I wish it did.

#autism #autistickids #realtalk #parenting

As a special needs parent to two non-verbal, Autistic young adult children, there are certain phrases I hear all the time:

1. You must be so busy all the time!

2. I don’t know how you do it!

3. You’re a hero. You’re so good for doing this.

To answer:

1. Yes I am.

2. I don’t either.

3. No. No I’m not.

To be honest with you, the last one bothers me the most. I’m not a hero for keeping my children with me. I’m terrified. I’m sick. I’m tired. I’m confused. I’m overwhelmed with fear. I’m angry. I’m any and everything but heroic in any sense of the word.

My kids are 19 and 21. My job should be done, but it’s not. I’m still on the hunt for a psychiatrist. I’m looking into residential care and day programs. I haven’t had a date night with my husband since the kids were born. I’m both resentful and, if I’m being honest, numb. It’s just what has to be done. I do it because I’m their mom and that’s my job.

Then, as you may know, Kavanaugh had to answer for his actions due to being accused of sexual assault. I myself have been assaulted, so this is more than upsetting to me. Then, I found a horrible meme online.

I have to tell you, this one sent me into hysterics. Shaking, screaming hysterics. How on earth am I supposed to let my babies go into day programs and residential care when there are people out there who make memes like this? How can I be certain that they won’t end up another statistic, like me?

Oh no. I’m no hero. Heroes are able to protect the ones they love. Me? I’m getting older. The constant stress on my life has given me the gifts of anxiety and IBS. I know I will have to let them go eventually, but I don’t know how. When I talked to one lady who runs one of the day programs about my fears her response was “Well, nothing’s perfect. ”

Shouldn’t we at least try, though?

#autism #autismparenting #stress worry

I don’t know quite how to start this, but after seeing some of the replies on some of the issues I care about, I have to say something.

I’m a huge fan of older TV shows, movies and books. I enjoy the ability people once had to deliver a zinger without tearing another person down, just the argument; the ideals of it. Things are now so out of hand, the first thing some people say is “Go kill yourself, you’re so fricking stupid!”, and I have to ask, how did we get here? How can we argue for the sanctity of life on one hand, and promote death on the other?

“Some cause happiness wherever they go; others whenever they go. ” — Oscar Wilde

While I understand that we change over time, and that there are many factors responsible for this change, this doesn’t seem like a direction we want to go in. When I look at human history, a lot of change seemed to lead us into a new and brighter future, now it seems that we are heading towards an absolute breakdown. We profess to care about life, while at the same time, encouraging others to die. We are walking oxymorons.

If you don’t get what you want, you suffer; if you get what you don’t want, you suffer; even when you get exactly what you want, you still suffer because you can’t hold on to it forever. Your mind is your predicament. It wants to be free of change. Free of pain, free of the obligations of life and death. But change is law and no amount of pretending will alter that reality. — Socrates

So the question is, what has to happen to fix this? How do we get back to caring about important issues and voicing our opinions on them, without tearing down and still caring for our fellow man? We currently have a president in office that just says whatever pops into his head, damn the consequences. Some people really appreciate that, but in reality, it’s a danger. When you sit in the highest office in the land, words and actions matter. Not just to Americans, but to everyone around the world. The messages Trump sends are not helpful. Being on Twitter all day isn’t helpful. Running the country like a business he can just declare bankruptcy on isn’t helpful. I know that most people will see this as an attack on Trump, but it isn’t. I want to see America succeed more than anyone, but Trump isn’t doing that. He’s just causing chaos everywhere he goes.

I believe in leading by example. The many times I’ve been a manager in one capacity or another shows that it is most effective. I would never ask my people to do anything that I haven’t personally done. I think one way to get back to civility is for our president to be civil. To not call Kim Jong-un ‘rocketman’. To not lie to Justin Trudeau. To not post ridiculous videos of himself attacking CNN. To admit his mistakes. That would show real growth.

None of us are perfect. We all make mistakes. To admit to wrongdoing is a sign that we want to learn and grow. I think now we are all in a state of ‘right-ism’ where we all want to be right. We all want to have the solutions to our problems. The thing is though, I don’t see one person having all the answers. We have to work together, and in order to work together, we have to care about each other.

One note does not make a symphony; one artist does not make an orchestra.

#change #politics #movingforward #thinking

I’m a mom to two kids who have been diagnosed with ASD, or Autism Spectrum Disorder.  First, you should know that there are a number of children and adults on the scale, and you should also know that Autism affects each person and family differently.  Also, there are a number of blogs out there that just like this one, seek to break the stigma surrounding children and adults with ASD.

If you are a parent of any kind, you know your time is extremely valuable and highly limited.  You have chosen to give your time to your child, (children, fur babies, etc..) and provide them with love, shelter, food, clothes, knowledge and providing those needs is all consuming, and we do it willingly; lovingly.  Like they say, it’s a tough job, and we parents do it willingly.

With as tough as being a parent is, we get no sick days, no time off, no paid vacation or retirement plans.  We also have to work, attend school meetings/functions, come home, prepare dinners, clean up, get everyone bedded down so we can get up and do it all again the next day.  Weekends are spent preparing for the next week of the grind, intermixed with HGTV episodes while laundry is being folded.

Tired, yet?

Don’t misunderstand me.  I love my kids.  Adore them actually.  And I, for the most part, enjoy being a mom.  Autism though, has really put a damper on that for me.  Just like there are books about parenting, there are books out there that are about parenting a child with Autism.  But even if every parent read every book ever written about parenting, not all scenarios will fit your particular child, and not every tip of advice for an Autistic child will fit that child.  The big difference for me, as opposed to parents who have children that can communicate, is that my kids CAN’T communicate.  They babble mostly.  I think when a person first becomes a parent there is a feeling of loneliness that occurs when you bring your baby home and it’s just you.  There’s no one to talk to. You can talk to your baby for sure, but it’s not the same as having a conversation.

That’s what I wish more than anything I could have.  A way for them to communicate.  To each other and to me.  I can easily verbally express my anger, frustration, joy, sadness, etc to my husband or my kids, but they can’t verbally express those feelings.  Instead, my daughter watches the sappy moments in her favorite animated films and then she will make herself cry.  My son gets frustrated easily, so he throws things and hits his sister.  Hard.  They want to be together and yet, be apart.  It depends on how they feel that day.  This is typical behavior. Autistic children don’t usually want anyone in their personal space.  However, we are a very loving, huggy type of family, and I think we’ve rubbed off on them. A bit, anyway.   I feel that if they could communicate their feelings, the meltdowns wouldn’t be as bad, but maybe they would.  Who knows.

On top of this, I feel guilty.  This entire post has been about my frustrations, what I want for my kids to be.  At the same time, I know my kids are frustrated as well.  To be trapped inside of their own heads, to have to find different ways of communicating other than verbally, to have their senses completely overwhelmed all of the time…I can’t even imagine how that would be, but it doesn’t sound nice at all.

On top of this, even with websites and supports out there, I still don’t tell very many people that both of my kids have Autism.  As you can tell from this post, ASD doesn’t have a short definition.  It’s not the same for every child.  What one Autistic child can do, another one cannot.  Even if you give two children the same treatment there’s no guarantee that it will work for both kids.  I just don’t feel like I have anything in common with ‘regular’ parents.  No offense, honestly!  But while parents of normal children talk about reading goals, sports or sleepovers, my kids get passed through the grades, because school levels don’t mean anything.  They have no friends, and aren’t allowed to partake in PE.  I just don’t know what or where the common ground is located.

I’m not even done.

My daughter goes to a special needs school in a town 30 minutes from my home town.  She’s made enormous growth going there.  My son, however, is still stuck in the special needs classroom in the school district where I live.  You see, when you have normal kids, you, as a parent, can choose where your kids attend school.  I don’t have that luxury.  I have to work with a ‘team’ who decides what’s best for my son.  You read that right.  Even though I raise him, spend the majority of time with him, know him better than anyone else, and I don’t get to decide what’s best for him.  My opinions and wants count for nothing. Zip. Zilch. Zero. Nada.  The ‘team’ says that they do, but it’s basically 8 people against me.  I am my son’s only voice and advocate; and I can’t win alone against an entire school district.  I would have to hire a lawyer, and that is something I cannot afford.

Speaking of things I can/can’t afford…

I just had to file guardianship/conservatorship against my daughter.  This is something that parents of mentally challenged children have to do when they turn 18.  Cost? About $1000.00  That’s right: Even though being a parent is costly enough as it is, being a parent to a mentally challenged child costs even more.  Benefits?  I get to manage her money, and make medical decisions for her.  I think though that for the money and court time, I should have filed power of attorney, and I think I will when my son turns 18.  It’s just easier.

This is the most recent article that sums up the cuts that keep happening in the world of mental health.  I am starting to think that politicians think that if they don’t fund mental health care, that the problem will just go away.  Trust me, it won’t.  Kids and adults with mental health issues/concerns need help, and they need it fast.  Missouri can’t keep ignoring this and issues like this with constant slashes to funding.  I’m not saying I have all the answers, but I am saying that we need to re-focus our priorities.  These problems aren’t going to disappear, and families like mine and so many others need more help than the zero we are getting.

Rant over for the time being.

#autism #parenting #autisticparenting #autistickids #frustrations #mentalheath #myvoice #opinion