Tag Archives: Relationship Builders

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.

Family Meetings

Does your family have family meetings? We started doing it a few years ago and the kids really enjoy them. Our favorite meetings are usually held on my bed and anyone is allowed to call one at any given time. Everyone is allowed to speak freely during the meeting and we encourage that the children say exactly how they are feeling. It’s very important not to judge or discipline someone for something they may say during the meeting because it really is a great chance to hear and understand just how each family member is feeling on a regular basis. Use what is said to improve the dynamics of your family and how it works. Remind each other during the meetings that you are all on the same team and the goal is to reach a happy and healthy living environment. Parents prepare yourselves as you may be surprised by some of the things your child has to say. They have become so natural in our home that we look forward to someone shouting “Family Meeting” and we all quickly gather to see what’s going on. WE recently had one just a few nights ago as moving into our new home and all the holiday chaos that was going on I wanted to remind my kids that these meetings and there input are still an important part of our family. I was able to stress the fact that school would be starting back very soon and that I was expecting a better performance behaviorally from both of them. My son expressed that he is not so keen to hear me use a profanity on occasion and I myself will have to work on that. My daughter had us laughing as she took her turn. Her response to my question “What do you think I can do to be a better mom?” was “Well you are doing a really good job and I think that if you could let us celebrate Hanukkah that would make you a much better mom.” I proceeded to inform her about Hanukkah and let her know that we weren’t Jewish and it wouldn’t be right to celebrate a holiday that’s not actually ours. My guess was she was totally down for the daily gifts that would have been received. She is 6 and responded with “well my cousin is Jewish” I then had to explain that it still didn’t make us Jewish.
So think of a few questions and call a family meeting. These meetings should never only be focused on the things that others are doing wrong and I often start them with a few compliments of what improvements that each family member has made to set the tone as relaxed and then we ease into anything that may be bothering us about each other. Now obviously there are a few things that you may want to talk about privately with your spouse/significant other privately away from the children in order to keep your relationship on track. Remember to start off with a few things you enjoy about each other and ease into the things that might be bothering you or causing stress and ill will in your relationships.
At the end of the day we all need to be reminded that we are on the same team and relationships need constant work. If you forget to water your plants on a regular basis they die. Don’t kill your relationships with lack of communication.