Tag Archives: Focus

An Autism Moms Worst Nightmare

Our entire lives changed this week. We have reached what I’m not even really sure to call. Is it a next level? Phase? I feel faced with a terrifying reality sooner than I thought I would.

When our children are born and we start to notice the delays and differences and start the journey of the diagnosis its devastating. We think it’s the worst moment of our lives. Time passes we transition into having Autistic toddlers and it’s hard but we are usually holding on to that optimism and love while we are overwhelmed with appointments. We are surviving this and learning all we can.

Before we know it school starts. Things get harder. There are confusing emotional meetings. We are sitting in conference rooms designing plans with an entire group of people we didn’t even realize existed in schools. This was never our plan for our children and we are very vulnerable agreeing and signing off on IEP’s or 504’s and trusting of these professionals who seem to know how things go.

As time passes problems arise. We start to educate ourselves and we are able to play a bigger role in making these plans. A few years in our kids are 2nd/3rd grade and we are in our routines, making progress, and really facing what our lives are being Autism/Special Needs moms.

Here we go we are at the end of Elementary School. We are terrified knowing middle school is coming. Our children are becoming pre teens. They are now not only struggling with their disabilities and challenges but now we have puberty. Just like that the game changes. We have the talks, we work hard to guide them through, and we face it life is harder.

At this time we have what we think to be good IEP and 504 plans in place. We have been part of this team we have built for years. By 5th grade some of our kids have been in the school system for 7, 8, 9yrs now as we started them at 3. There may have been a year or even two that our children have been held back due to their disabilities, their grades, or even their lack of social skills.

We are now used to the phone calls, the rushing to the school because our child is sick, had an emotional outburst, or just couldn’t make it through the day. It’s never easy we are never really resting assured. We have put plans into place, designated people we can trust as back up emergency pick up people and this becomes our now normal. Our lives are not the same as the other parents but we are keeping up. Our kids might even be excelling with their grades, trying harder to help us help them. We by now might even have some friendship building. We have some hope.

Then it happens. The phone rings you see before you answer it’s the school. There is a familiar voice on the other end. At this point we are pretty much on a first name basis with everyone at the school. We are there more than we want to be. We have even become friendly with the staff. You aren’t gut wrenching panicked by the calls home by now.

This phone call is different. When you hear the words coming from the other end you feel terror. You hear the words “your child has hit another child” You struggle to not let the phone hit the floor. You take fight for a breath and you listen to them tell you what they know to have happened. Your mind starts to race, your gut feels like there is a basketball in it, you fight harder to respond to the person on the phone. Their voice is calm, maybe even soothing you fight for your focus. They make it seem like they have it under control. You know it’s not ok. You just know. They have a plan, they tell you they have it under control. They say “the child didn’t need to see the nurse, she’s ok, we are just going to have him stay in school detention for the rest of the day” They are so calm and their voice is soothing and you agree. You hang up the phone and you know it’s not ok.

You think about the other parent. Another piece of your heart rips apart. You feel that parents terror as they receive the call that a boy at school just hit their daughter. You feel their rage. You feel their heartbreak. It’s not ok. Your emotions pour out and your mind races trying to think of who the child is. By now you know so many of the kids at the school and many of the parents. You can’t place this child. You realize you don’t know the parent. That doesn’t change the fact that you are devastated for them. You realize that you can’t reach out and that they aren’t one of the parents that has come to know your child.

Up until this moment your child has never hit another child. You don’t understand why this has happened. This isn’t supposed to happen. Your child has a team of professionals, a great plan, fantastic accommodations, your child has an aide that spends the entire day shadowing and guiding them. It’s not ok. No matter how calm the school was, no matter how soothing their voice was, no matter how much they assured you that they have this under control it’s not ok.

Your child comes home from school. He takes the bus because he has always taken the bus that’s his routine. He can’t handle the chaos of exiting the school with all the other kids. As he walks through that door you are ready to hear his version, but the tears roll out of your eyes because you are thinking about that little girl who is now telling her mom that your son hit her. This is not ok.

You sit down with your child and you see he is still on edge. He’s not ok. He is still in an Autistic crisis. You let him tell you his version. As he finishes you think about the little girl again. You think about her parents. This is not ok. You talk to your child and you tell him nobody should ever be hit. You talk about the reasons that you have always used punishments. You tell him I have never hit him because he has Autism and you knew since he was a toddler that you never wanted to give him the impression it was ok for anyone to be hit. He’s never seen anyone hit you. He’s never seen any type of physical violence in life. Actions have consequences and although he has Autism he still requires punishment. He agitates during the conversation and as his mom you know you have to decompress him. You have him take a nice warm bath, you use your calming oils, you pull out his comfortable pajamas, you pull out his sensory blanket, you feed him, and you sit back down to talk to him. It’s not ok.

He’s calmer now. He understands the punishments you are implementing. Now you talk more about him hitting someone. You tell him his disability is never an excuse. You’ve always told him that about everything in his life. The talk gets deep, it’s emotional, and now he understands how the little girl felt when he hit her. Now he has regret. Now you talk about changes. In these hours you know that it’s time to revise plans.

You talk with members of his team from school again and you find out more details. You want to know why his plans have failed. You find share back and forth and you find out that as your child started to spin this could have been prevented. It should have been prevented. As one of the team members and as his parent you realize he has been failed. He’s still just a child and children make mistakes. Nothing at all justifies the fact that he hit another child. You can not place the blame for that on anyone but him. You can however start to discuss the fact that his plan failed, his team failed, the aide (that was a substitute) failed, I as his parent failed. My child started to display an outburst and nobody intervened. Nobody used his plan. He was in a gym, bright lights, loud noises, movement everywhere, and participating in game with balls, rolling, pins falling, and some screwing off was happening, children were being children in gym class. Gym class is optional for my child. It’s in his plan. It’s left up to him, his aide, his mood, his desire to interact, and his Autism whether or not he goes to and stays in gym class. On this particular day he was tossed into an extremely stimulating environment for a child with Autism and nobody paid attention to the signs of his outburst beginning. Nobody intervened. The for the most part ‘stranger’ failed to notice his agitation. They failed to notice the progression of the agitation and so did my child. He wasn’t self aware. Nobody cued him. His entire school life he has been cued in these situations but this day was different. Those are the questions that I’m not getting answers to. It’s not ok.

It’s been brought to my attention that the other parent would like to press charges against my son. This is the nightmare. My child has Autism. The plan so carefully designed failed. This whole inclusion with normal children thing failed. Every person on his team failed. My Autistic child could go to jail. His actions were in no way ok. Him going to jail is not ok. Another parent wanting my child to go to jail is not ok. The fact that school, his team, his aide (substitute) and his plan, myself, and himself failed is not ok. He’s still a child. A little boy who is trying so hard to find where he fits in and learn to control all, these things in life that trigger his Autism. It’s not ok. I’m terrified more than ever before for my child.

There is more to this. There is another chapter. This is a blog post so that chapter will be written next. I can’t do it now I’m emotionally drained from this chapter. It’s not ok and it gets worse.

The Restart

It’s been two years since I have written a blog post. It feels like it’s been an eternity. This blog was originally something I did for myself. I told my stories and worked through my feelings and truths. Most people want to paint a beautiful picture of themselves. I’m not really one of those people. I wanna tell my truths, my struggles, my obstacles, my daily chaos, and my little accomplishments. I don’t want my children growing up with some fantasy that life is so wonderful because it’s not. There are wonderful moments but most of it is harsh and some mistakes you make you never come back from. I don’t sugarcoat life for them and as they become more age appropriate they will read my posts.

I don’t know where to pick up from after the two years of not writing. For right now I think just getting through this post is a good place to start. I’m still holding life together, and I have a lot of stories to tell.

So here’s to the next beginning the ‘restart’ of my blogging. For tonight that’s going to be enough. Let’s call step 1 complete. I have written.

I Cringed When I Walked in My Child’s Classroom

This week I did some volunteer time in my daughter’s classroom. Naturally I was about 3 minutes late. When I walked in the door of the classroom I saw that our topic was politics. I cringed. My daughter is an innocent 8yr old who I kept this election from. As an adult I often felt as if even I should not have witnessed the things I did during this election and now I am expected to help with this lesson. Why oh why are we doing this? Millions of things raced through my mind. I wanted to grab my daughter by the hand and run.

Then it happened and I saw that none of the ugliness was going to be a part of this lesson and we were actually using this opportunity to show them what an election should be. Each child was asked to ‘run for President’ and build a platform. Now I was impressed.

There was no talk of why any other child should not be the President it was all about why individually they should ‘get your vote’ Now being that I was in a classroom full of 8 and 9 year olds I did not see some of their answers coming.

Our children are better people than we are. The answers coming from all these little people really did something for my soul.

I would protect our planet all of the Earth and the water. I would teach everyone how to garden so that no one would ever go without food. I would tell Americans that we all just need to be kind and care about each other. I would tell my fellow voters to vote for me so we can work together and build better communities.

These are just some of the answers our 3rd grade children were giving.

As they worked on the craft part of this project I got a chance to whisper chat with the teacher. I had been a bit worried about how we were going to make this transition with our children. Our kids have seen a lot more than we think they have over this last year and they for the most part know that we should be doing better. Well it looks like that’s where the focus will be. For now we just need to teach them to do better.

Obviously our children need to learn about Government, Constitution, Laws, etc. So now I will wait it out with the rest of our Country and see what the next POTUS and FLOTUS have to offer to our schools.  I will also be waiting and looking forward to the year that those 3rd graders are old enough to run for President.

Time For More Change

I’m the girl who makes New Year’s Resolutions and actually keeps them. I started this only 7yrs ago. Trust me I wasn’t always ‘that girl’
This year I have made several resolutions. I am going to be focusing my energies in different places this upcoming year. I have wasted an awful lot of time and energy in places it just didn’t belong.
My first resolution is to stop feeling so obligated to people who just don’t appreciate it. Along with that I am not going to allow myself to be upset that they get upset over it.
Next I have great family members that I have neglected for way to many years. Its time to get them back where they belong in my life. I finally feel like I’m someone they could be proud to call family.
We all know that I am probably one of the most honest people around. This year that honesty will reach a new level. I am tired of being uncomfortable in some of my life situations by not addressing issues that are ‘white elephants’ in the room.
I’m going to be a lot more frugal this year and am looking forward to teaching others to do the same. So all of you that tell me that you want to learn how to coupon here is your chance. Follow my blog. It will give you an email update to new posts and although I post it to Facebook and Twitter you just might be overlooking it or not have time at that moment to read it.
I’m quite organized but really want to take that to a new level and some of my fellow blogger friends I am watching and admiring your skills and will be taking lessons from you.
My tiny family will be my main focus as always and I will no longer feel beat up by those that think Autism is an excuse in my life. Its not an excuse its a lifestyle that I live in the best interest of my young children.
I’m very much looking forward to this year as I know it holds many Blessings for me and mine but I know these Blessings are things I have to work for. I don’t get to sit around and have them tossed down upon me.
Happy New Year I’m really hoping to share this year with so many of you and I wish nothing but the best for everyone. Now lets get it started!
My word and hashtag of 2015 is #Winning its about time I win this game of life and catch up to so many of you!