autism safety Archives - Autism Apples Koolaid

January 26, 2020January 26, 2020

How to Find a Safe Place for your Adult with Autism

One thing I hear over and over again is what to do with an adult with autism during the day. As parents, we know our kids do not want to spend every waking moment with us. Even those who are severely affected need some diversion in their lives. And even if they don’t need a break from us, we definitely need a break from being a parent at times. I know that’s hard to admit, but saying you need a break doesn’t mean you don’t love your child more than anything in the world. It simply means you need to breathe.

As I’ve shared before, we are lucky. We have the services the kids need here in our small town. Yes, I wish there was more to do, but that’s the trade off for living in the town we all love. We had speech therapy, OT, equine and even aquatic therapy. They have a place they love to go to every day. It wasn’t always easy, though.

Many years ago, our county board of developmental disabilities had a sheltered workshop. Casey started going once a week during the second semester of her sophomore year. She loved it and continued doing that her junior year. Her senior year, she went to school Monday, Wednesday and Friday and the workshop on Tuesday and Thursday the first semester and switched days the second semester. The week after she graduated, she went to Hopewell every day.

Rob was already familiar with the workshop, so he didn’t start going until his junior year. Again, he went to Hopewell often throughout his Senior year.

Because I worked for the school that the county board has, I knew most of the people who worked at the workshop and, though I was nervous that no one would like the kids, I was comfortable that they would be safe.

Unfortunately, a few years later, their day hab was privatized. Honestly, I was terrified. Many of the people I knew would be leaving and I was worried that anyone that worked there wouldn’t be there because they had a passion for helping others but because it was a job. Or, worse yet, they wanted “control” over people who couldn’t fight back or tell on them.

Thankfully, Rob’s favorite person stayed (If you ask him about friends, he will say “Bob is my friend.” 🙂 ) and Casey seemed okay with new people. But – I was still nervous and we’ve had some bumps. I’ll be the first to admit, some of the bumps were caused by my lack of sleep and the fact that I get angry and over react when that happens. And sometimes, I’m just so sick of dealing with stuff, that I yell over little things. (I always try to go back and apologize to people – I truly don’t mean it often, but sometimes, everything seems to be too much and I lose it. 🙁 )

So – if you are looking for a safe place for your adult, here are a few tips I’ve learned.

Visit without your adult. Just sat back and watch what’s going on. Is the staff interacting with everyone? Are the attendees actively involved in their day? Is it clean? Accessible for everyone? Talk to administration and ask all of your questions. I promise you – they have heard them all before. If they truly want to get to know your adult, they will be happy to answer anything. Ask about staff ratios. Ask about daily routines. Share your concerns about your adult and see how they react. I told staff that Casey could have terrible screaming meltdowns and watched their eyes to see their true thoughts.
Talk to families with adults in the day hab. While administration may not be able to give you that information, you can ask if they would contact families and give them your contact info. Talk to people who go there and see what they think.
Take your adult for a visit. See how staff interacts with him/her. Show them how you communicate with your child and see if they will try. Again, share any concerns you have. Sensory issues, behavior problems, dietary concerns. You need to be completely honest with the staff if you expect them to be honest with you. Ask hard questions and take notes.
Once you decide where to try, take your adult the first time. Be there as a comfort if they need (Casey and Rob had a aide go with them – they never seemed to want me around! 🙂 ) and leave if they want you to go. Keep an eye on your child the next few weeks and see if you notice any new behaviors that could be telling you they are not happy there or are scared or anxious. If you see anything odd, go talk to the day hab.
Drop in for visits. If you are told you are not welcome to stop in, do not even think about letting your child stay there. Stop by unannounced and see what’s happening. See if your child seems to be interacting and happy.
When there is a problem, immediately talk to administration. Don’t wait and see if it gets better. (I do wait if Rob seems anxious, as he does get worked up about things they have no control over). Ask staff to contact you if they notice anything off about your child. Trust is a two way street!
Make friends with the staff. No one wins if you try to be superior or a witch about your child. No matter what you think, your child isn’t perfect and staff needs to feel comfortable calling you over little issues or they won’t communicate when there are big problems. Always, always, always keep communication open! I can’t stress that enough. I’ll even venture to say that the staff at Hopewell wishes I didn’t communicate as much! 🙂 But, I feel better knowing that they have all the info they may need, whether it’s that my parents are picking up the kids that day or that one of them didn’t sleep well the night before.
If they have family events, go to them. Hopewell has a Thanksgiving lunch and it’s so much fun to see old friends and meet new ones. Parenting a special needs child can be lonely. Sometimes, it’s even lonelier when they become adults as you don’t have school activities to meet other parents, anymore. You need support from others who understand your life.

A word of caution. When you are asking for recommendations, you will hear positive and negative about every place you visit. For each glowing report you hear, you will hear a horror story. Take both with a grain of salt and make your own judgments. When you decide on a place for your child, visit often. Make yourself available to staff. Just remember to follow your own gut – you will know what is best.

Unfortunately, there is no way, barring keeping your adult with you every minute, to be 100% positive of their safety. If you feel uncomfortable around a person or a place, listen to your feelings. I wish there was a guaranteed way to always make sure they are with people who love and respect them – I wish that every day. I look at strangers with suspicious eyes. I hate to admit it, but I often look at new staff the same way. Until I know you well, you are a possible danger to my children. Please don’t take offense. I simply love them more than I care about your feelings. I have to be sure they are as safe as I can possibly make sure of.

October 7, 2018

Autism, Discipline and Manners – Is it Possible?

For the 5th time in just a few weeks, a parent told me that they never “discipline” their child with autism – that their life is hard enough without rules they need to follow. HUH?? What exactly does that mean?

You read it right. There are parents (both of special needs and typical children!) that no longer believe in teaching their children manners or rules. They want to be the child’s “friend” and too many rules will make that impossible. They believe no one else is polite, so why worry about their child’s manners? And I’m sorry – I have the wrong attitude – but I wanted to smack them! You don’t have a child to get a new best friend (but, if you are lucky, you do become that – through hard work, patience, laughter and love!)

I suppose, in a way, I was lucky that Casey had turned 4 before she was officially diagnosed. I had certain expectations for her and taught those to her before I was told it would never be something she could do. (Remember – this was 26 years ago – autism information has come a long way since then!) I was told she would never be potty- trained, never talk, never be able to communicate her needs/wants, need constant supervision. (I have since thrown away that first book I read – it was terrifying!)

Some of what I was told may have come true, but not much of it. And through all of the books I read and conferences I went to, I continued to have expectations for her – the same ones I had for Mandy and Rob. Sure, it was harder to teach her and Rob some things, but I never gave up. I had to be creative at times to teach them to say please, thank you and excuse me. I still have to constantly remind them to let others walk through a door before them and to share.

Sometimes, I have to remind them to say please and thank you. But, that’s what a parent does – you constantly remind your child to act in a certain way. You don’t give up because it is difficult. You find new ways to teach them. Because rude people are not accepted in society. It may seem to be the norm, now, but it is not acceptable to me. Autism does not mean my kids have a free pass to be rude little brats. Nope, no way, not in my house.

Are they always perfect? God, no! Am I? Nope. Do I let things slide at times that I shouldn’t? Yep – especially when we are having a hard day or we are tired. Do I regret it? Sure – but I’ve never claimed to be a perfect mom. I do my best and let stuff slide – probably more often than I should, but some days, the little things just aren’t worth the added stress.

Yesterday is a prime example. I wasn’t feeling well – Casey was in a mood – Rob repeated his anxiety song for almost 9 (yes – 9!) hours straight with no breaks. By the evening, I didn’t care about how well they scrubbed themselves in the shower or how well their teeth got brushed. We just needed it done with as little added anxiety as possible.

But, even at that, having autism doesn’t give them a pass on behaving themselves. Autism causes certain behaviors and I would never “punish” them for those, but other things are not autism. And I expect them to behave. When they don’t, I correct them and explain in as few words as possible what they need to do. Sometimes, saying “That’s bad.” is all I say. If you say too many words, your child won’t be able to process what you are saying and you will be wasting your breath – and be right back where you started from.

Everyone has rules. Your child may have autism, but they need rules, too. You don’t leave the house. You don’t climb to the roof. You don’t jump off the roof. You don’t leave with strangers. You don’t hit others. You have to wear clothes when you leave the house. No spitting. No running. Hold an adult’s hand when you cross the street. You will wear seat belts. You don’t sleep at work.

Rules keep your child safe. Will your child understand that? Probably not. Will it be easy? Nope – you may never teach them some rules so you can trust them to do it. (Look both ways before crossing a street is a tough one for us. They both glance each way AS they are crossing the street. It’s a constant battle, but one that I can’t give up on. It’s a matter of safety!)

Being impulsive is a huge part of autism with some people, so not only will you be fighting the communication aspect, but also their own impulses. You will get tired, but you have to do this! You have to teach your child – you have to discipline them. Imagine how your typical child will feel if they are punished for something, but the child with autism isn’t. While I know life isn’t fair, that definitely isn’t! It’s hard enough to have a sibling with autism without feeling as though they are more important or special than you.

Obviously, you will have to figure out what is autism behaviors and what is just being a brat. Meltdowns from sensory issues cannot be helped, until you know what’s causing the problem and fix the issue – are their clothes uncomfortable? Are they hot? Cold? Hungry? Anxious? Are the lights too bright or blinking? Is it too noisy? Is someone’s perfume too strong? Always remember that meltdowns are NOT tantrums.

A child has a tantrum when they are told “no” or something is taken away they want. Or when they are tired or hungry. They kick and scream, but know exactly what they are doing. A child with autism will kick and scream, but have no awareness of who is around them. Casey never knew I was there until she started calming down.

You aren’t doing your child any favors by letting them do whatever they want at home. You are making their teacher’s life miserable because, at school, they have to follow rules! That teacher has enough to handle without the added bonus of a little brat with parents who refuse to believe their angel could be bad.

Autism or not, discipline and manners are important! I know you are tired and stressed and don’t want to deal with anything else. I’ve been there! But, the sooner you start teaching your child, the easier it will be to continue. Take a breather when you need to – don’t strive to be perfect. A perfect parent simply does not exist.

June 4, 2018June 4, 2018

Autism and a Mom’s Fear of No Fear

A few weeks ago, I was reminded again that even though Rob has learned to fear a few things, he still doesn’t have a clue about how dangerous some situations can be. Just another fun aspect of autism we deal with every day.

Rob was walking with a group from their workshop and never bothered to stop at a corner to look both ways before he stepped off the curb. Luckily, the staff was quick and there were no cars coming. But still, I have been trying to teach both of them to look both ways before crossing a street since they were tiny and it just won’t sink in.

Casey will flip her head like she’s looking, but she’s just doing what she thinks I want. She isn’t really looking at all. And she’s stepping into the street as she “looks.” Rob won’t even hesitate to walk across a parking lot or a street. He doesn’t even pretend to be looking. I’ve got a grip on both of them or they are close enough to grab when we walk anywhere.

Part of the reason they aren’t scared is that even though I tell them a car might hit them, it’s never happened. They have nothing to help them understand that they could get hurt and very badly. I think the only way for either of them to understand the danger would be for one (God forbid!) to get hit by a car. Even then, I’m doubtful the other one would be more careful. It’s not something they have ever seen happen, so obviously, it’s never happened to anyone.

They both understand a stop sign. They just don’t know why it’s there. I’ve tried saying “Look, I’m stopping at a stop sign” when I’m driving, but they don’t even look up. When we walk, I say “Look – a stop sign. What do we do?” One of them will say “stop” as they walk right past the sign.

I don’t want to even think about the times I walked through parking lots when Rob was a baby. I would be carrying Rob, with a death grip on Casey and praying that Mandy would hold Casey’s other hand (Mandy is 18 months older than Rob – hardly more than a baby herself when I was trying to get us safely to the car). I carried Rob longer than he needed, simply because he and Casey would both dart away and it was easier to carry him. Thank God, we never had a major issue (just a minor one with Mandy when she was older!)

When Casey was 7 or 8, we were all outside playing. Suddenly, I realized she wasn’t in the backyard anymore. I thought I would throw up as I ran to the front of the house and the street. No sign of her – I ran around the house again, calling her name and wondering who to call first to help me find her. As I was making another circle, I heard her giggle and looked up to see her legs hanging off the porch roof. She had climbed the wrought iron corner posts and was just sitting there. I still don’t know how she managed to climb over the edge without falling.

I stood there looking up at her while she laughed and kicked and wondered if I could get her down without both of us falling. I was heading in to call the fire department (my dad was a captain) and ask for help when I had an idea. I asked Casey if she wanted a popsicle – and she flipped onto her belly, stuck her feet on the posts and came down. I couldn’t breathe until her feet were safely on the porch. “Red!” she said and went inside.

She also jumped off my dad’s boat more than once. She walked out into water until she had to tip her head back to be able to breathe and keep going (one of us was always thisclose to her – and she always had a life jacket one!) She grabbed at knives and jumped off the top of their swing set. She was crazy on the trampoline. She ran when she had the chance in stores or at school.

Rob was even more of a dare-devil than she was. He jumped off the roof into a pile of shingles, did a somersault and took off running. He jumped into pools with no thought of whether he could touch or not. He climbed scaffolding (yep – I lost him on it once – thank God I heard him giggle as he watched us run around the house looking for him!) He tried walking down our basement steps with a blanket on his head and fell – earned him a helicopter ride to the nearest children’s hospital when he wouldn’t wake up the next morning.

He jumped down the other steps and broke his collarbone. He fell and cut his head open – stitches. We no sooner had a hospital bill paid off than he did something else.

Neither of them understand the danger of strangers. They have been told more times than I can count to never leave with someone they don’t know, but I worry that if the stranger offered them the right things, they might go. They know to find a policeman or fireman if they need help and they both know their names and addresses, but would they really look for help? I doubt it. Having them disappear terrifies me.

Even though they have both learned to fear some things, I still worry when we go somewhere different. I’m more relaxed, but still know that any second, one could dart away. Rob has a healthy fear of deep water now (he jumped into a pool with a friend who is much taller than him and couldn’t touch – scared him beyond words) Casey is afraid of heights (she insists on riding the Ferris wheel every year at the fair, but it scares her to death when she is at the top!)

I am so thankful they are both learning to be more careful. I know that they will probably always be somewhat fearless compared to others, but at least they aren’t jumping off the roof anymore! And I know how lucky I am that neither of them ever tried to get out of the house. I know several families with more locks on their doors and windows than a vault and still need alarms.

What I really want is to watch them every second of the day, but I know that’s impossible and not healthy for any of us. They are adults and need some space from me – and I need a break from them. But still, I think about it – the world is such a scary place – especially when you don’t understand those dangers.

My plan for the future is simple – lots of hair coloring to hide the gray hairs that pop out every time they run across the street without looking or when Rob swings so high or when Casey wants to look at coloring books in a store by herself. And lots of deep breaths to keep from panicking at their little “thrills.”

Be safe, everyone!

September 9, 2017

Autism and Your Child’s Safety

I’m sure every one of you has safety precautions in place. Your doors stay locked for the wandering kids. Your windows are permanently closed to prevent falls. Your cupboards are latched, toilets are closed, cleaners locked away. Your home is as safe as autism will let it be. But have you thought about your child’s safety in the event of a car accident? As you travel? What about a house fire or natural disaster?

Where I live, tornadoes are possible but rare. I had always wondered if the weather turned terrible at night if I could get both kids to wake up enough to get to the basement with me – and would they stay there? A few years ago, our summer was one threat of tornado after another and terrible thunderstorms. The first time the tornado warning sounded, I jumped up and ran to Casey’s room. She is a deep sleeper – one that rarely moves during the night and the one I was most worried about waking up.

She was sound asleep, but when I ran in and started shaking her, she woke right up and got out of bed. Mandy was on her way from her room as I walked out of Casey’s and she took Casey and the dogs to the basement as I went to get Rob. He woke easily, grabbed his blankets and went to the basement with me. The kids crashed on a mattress as I watched the TV and cried with relief that I would be able to get everyone safe during a weather emergency.

Every time I had to wake them up that summer, they jumped right up. You need to consider what you will do if your child won’t move fast enough and you can’t carry them. Make more than one plan in case the first one doesn’t work like you think it will. Consider purchasing camping lanterns for light as lit candles are too dangerous for our kids. Make sure you have water and snacks in your safe area. Think about packing a backpack with medicines and fidgets to help calm your child while you wait for the storm to pass.

In my case, my first plan was to try to wake Casey first, then go to Rob. If she struggled to wake up, I was going to take him to the basement and turn a power rangers movie on – I knew he wouldn’t leave the movie to come looking for me. If neither would wake up, I was going to toss water on them. Yes, I know that sounds mean, but I knew it would wake both of them up enough for me to get them moving.

Being in a car accident is one of my biggest fears. If I am unable to help them, I don’t think either will try to leave the car. I desperately hope I am wrong, but I just don’t think they will. I have stickers on my windshield stating that there are occupants with autism who may not respond as expected. I have information in the glove box for each of them – contact info, name, address, their diagnosis and what they might possibly do.

My list includes the fact that Rob may run away and that neither understand danger and may wander into traffic. It says that both have moderate autism and that communication is difficult. Casey may be jumping and screaming, while Rob may be pacing and yelling. I want every first responder to know what they may be doing and to not try to touch them. The kids need to be given space to calm down and for people to use statements such as “Tell me your name” instead of saying “What is your name?” My lists explain that questions are confusing and that they need time to process the words.

Rob is a big guy. I don’t want anyone to think he is being aggressive when he is simply overwhelmed, scared and trying to calm down. Casey’s screaming and jumping is scary to see and if someone tries to touch her, it will only get worse. First responders need this information. I’m sure their adrenaline levels are sky high when they respond to emergencies and they need to make split second decisions for their safety and that of my kids. The more information available to them, the safer we will all be.

As for home safety, Casey and Rob both know they are to leave the house if they hear the smoke detectors. They are never alone, but I have drilled this into their minds. They are to leave and go sit in the garage (our garage is unattached) and wait for someone to come. Will they do it? I doubt it. The smoke detectors have gone off and they have no response to them at all. Again, I have made my plans for leaving the burning house.

In the middle of the night, I will get Rob first, as his room is right beside mine. Once he is on his way to the garage, I’ll get Casey. We can get out one of her windows without much of a drop, if needed. Of course, as soon as I see the danger, I’ll be screaming both kids’ names and hoping they come to me and we can all leave together. Maybe I overthink things, but I want a plan in place, just in case.

It’s just like learning CPR. You pray you will never have to use it, but if you do, you want your movements to be instant and not have to stop and think about anything. Plan ahead – think about all of the ways your children might react (like that’s even possible to do with our kids!) from hiding to running to having a meltdown. You have to consider how you might move a person that is bigger than you and get them to safety. Keep a treat they won’t refuse where you can get to it easily and bribe them if necessary (though I like to call this positive reinforcement instead of bribery!).

Contact your local emergency services and see if you can have your phone number highlighted with additional information. This means that when 911 is dialed from your home, the fact that you have a person with special needs will automatically pop up on the operator’s screen. Add as much information as possible, such as how your child may be react or how they communicate. I did this a few years ago with our local 911 system.

A friend of mine at our local board of DD is working on a project for first responders and emergencies with people with special needs. This could be a great suggestion for your local boards – or something you could work on. First responders need training in helping our families and this doesn’t always happen, especially in rural areas.

My thoughts and prayers are with the families affected by Harvey, in the path of Irma and near the terrible wildfires out west. These are terrible situations, but when you have a person with autism, it can be so much harder. Please say a prayer for them, too.

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