Category: autism safety

Posted on

Autism and Tips from First Responders (part 1)

Autism and Tips from First Responders (part 1)

Last week, our autism support group (ASK Autism) was excited to have four first responders from our county join us to share their tips for helping them keep our family members with autism safe in emergencies. We got so many wonderful ideas that I decided to split it into three parts and will share the information with you over the next few weeks.

Autism can be particularly challenging when it comes to preparing for emergencies. By it’s very nature, autism is unpredictable at times and we all know that just because our child does something one way, one time, it doesn’t mean they will ever do it that way again. But – we can prepare ourselves and as many people around us as we can.

The first one to speak was a deputy sheriff. The sheriff’s department handles the entire county where we live. If you have a police department, make sure you talk to them, too.

Deputy Bryant’s biggest tip was to do anything we can to make it obvious there is a person with a disability in the vehicle in case of an accident and we aren’t able to speak. Stickers on the windows are good, but in the dark and in an emergency, they might not be noticed. He advised purchasing or making seat belt covers that say “person with autism” or whatever the disability may be. These can be purchased online and aren’t too expensive.

The covers are simple – just some type of material that wraps around the seat belt and is held by Vel-cro, so you can easily switch to other vehicles if you need. Mandy and I are planning to purchase plain ones and use a Cricut to add the information we feel is most important to the cover. I plan to write on the underside information like their names, an emergency number and their birthdays. The deputy shared that the covers, even if the person was out of the vehicle, would be something that would be noticed and would help the first responders to understand how to help your loved one faster.

Another tip the deputy shared was that our county collects information from families and that when 911 is dialed from that residence the information will pop up to the dispatcher. The forms are simple and we can give us much information as we want. Items like where they sleep, if they will come to their name being called, anything that may help first responders that are called to our home in an emergency. Even if you think what you want to share is common sense, share it anyway. You never know what might save your child’s life.

I don’t believe this is something that is available everywhere, but maybe your phone call to your local department will get the ball rolling for them to put an information system in place. In either case, you won’t know until you call. My forms are almost ready to email back – I’m just waiting to see if I think of anything else that might be important.

Another idea he had was to flag your license plates. Again, this is available in Ohio – you would have to check with your area. It’s another simple form, but this one has to be signed by a doctor. It lists the person’s name and attaches their government issued ID, if they have one. You can list up to nine license plates of vehicles your child may be riding in and if your plates are run by a deputy, it will show that there is a person with a communication disability in the vehicle. It won’t share more than that, but at least it is a warning that there could be a communication issue and the deputy can be aware that behaviors may occur because of that.

The deputy also recommended that you have a recent picture of your child on your phone at all times. And to know their weight and height. If your child is a runner and disappears on you out in public, you have an instant picture to show anyone who might be helping you look. When cell phones became so wide-spread, I took a picture of Casey and Rob as we were leaving to go anywhere. That way, I had what they were wearing in the picture, too. Thankfully, I’ve never had to use my pictures, but you never know!

Share any sensory issues your child may have, such as to the flashing lights or sirens. First responders won’t know to keep a close eye on your child if they don’t know loud noises will cause them to panic and run. Our department also has Project Lifesaver available for our residents. It is a tracking device your child can wear and if they do get out of your home or away from you, they can be tracked quickly.

Something I found very interesting as all of these men talked to us was they kept saying that, though they had been trained in working with special needs, they were surprised at our questions and had to really think about what truly coming to an emergency with a person with autism might be like. My best advice to you – call your police/sheriff’s office, the fire department, the emergency squad. Get as much information to them as you can about your home, your child and their needs. They can’t be prepared to help if they don’t know the situation. Call before you need them!

Posted on

Autism and Little Tiny Steps Forward

Autism and Little Tiny Steps Forward

Yesterday, I heard about a Fountain of Dogs that a city not far from us has and decided to take Casey and Rob today. Casey had already asked about going for a long hike and I knew it was just too hot, so we went to the fountain instead. I knew she would like it just because we went somewhere and I thought he would because it’s water.

It is just as it’s described. A fountain with dogs in and around it – all spraying water at the center where a giant golden bone is displayed. She was laughing as soon as she saw it. He walked quietly to it and just stood there. I could almost see his shoulders relax as he watched the water sprays. Soon, he was sitting on the edge. He didn’t smile. He didn’t touch the water. He just watched. And his body became even more relaxed. When a bench in the shade became available, he moved to it and again, he was the picture of complete relaxation.

Casey, of course, had to get her picture taken with several dogs and had to try the drinking fountains (they were off because of the virus, I am assuming). She had to walk all the way around the fountain. I sat on a bench near Rob and enjoyed the fountain. As I watched them, though, it occurred to me that it wasn’t too long ago a trip like this would not have been a good idea.

For one thing, keeping Rob out of water has never been easy. He is drawn to it (aren’t many of our kids??) and can’t resist putting his hands in. He did dip his fingers this morning, but he made no effort to jump in the fountain. When he was little, I would have been sitting on him to keep him out – and Casey, too, probably. Visiting the fountain would have been an epic failure.

And – I let Casey walk around by herself. The fountain is on the corner of two busy streets (but, it’s Sunday, so not as much traffic) and even a few years ago, I wouldn’t have let her get that far from me – especially near streets. She has a history of bolting when she sees something she wants. But, today, I sat in the shade and watched her wander around and check out all of the dogs. She got right down beside a few of them and looked right in their eyes. (She even sat on a few!) Rob watched the water and never said a word.

As I sat there, I wished that the other people who were there had a clue just how huge this was for us. I wished someone else could see them enjoying something so simple – and that I was enjoying it, too. I wasn’t trying to keep her from bumping into people (she really doesn’t watch where she is going!). I wasn’t fighting to keep him out of the water. I wasn’t trying to keep him quiet. I was sitting – just like the other parents. It’s an odd feeling.

I thought of the many, many times we had to leave somewhere before everyone was ready because of autism. Whether it was a sensory overload or a meltdown from hunger or heat that they couldn’t communicate to me. Maybe it was just too much for me to keep fighting to keep one safe while the other wanted to run. Maybe I just didn’t want to deal with the stares. There have been lots of reasons why we didn’t try (or didn’t stay long!). But today – all of those little, tiny steps forward were obvious.

And that’s one thing about autism. There are always steps forward. They may be incredibly small, but they are there. Maybe your son hung up his coat or your daughter took her dishes to the sink. Maybe someone learned to put on their socks or grab their backpack as they left the house. Everything that so many other parents take for granted – we celebrate! Because, we all know, for every step forward, there will be one back. Sometimes, it feels like you are just stuck in the same place – no progress, no improvements, no reason to celebrate. I’ve felt that way – many times.

The funny thing is, I remember one particular rough time. It seemed like neither was making any progress – that we had been working on the same darn things forever and a day and weren’t getting anywhere. I was tired – fed up – discouraged – done. I just didn’t have the energy to care about those baby steps anymore. But, my aunt and uncle were visiting from Minnesota and we went to my mom and dad’s house to see them. (Honestly, I was ready to say “nope, ain’t coming” but I really missed my aunt and uncle, so I dragged the kids out of our house.) Anyway, while we were there, Rob was upstairs doing Rob stuff and Casey was sitting in the chair, smiling.

I was flopped on the couch next to my aunt when she said she just couldn’t believe how different they were from when she had seen them several months ago. I remember just looking at her wondering what she meant. She went on and on about the differences – how calm she was – how she was willing to talk a little more – how he looked at her when my aunt said hi to him – how quiet he was upstairs. And I was ashamed of myself. I couldn’t see the forest for the trees, apparently. Once someone else pointed out their progress, I could easily see it. Sometimes, it takes an outsider to show us just how much progress our kids make – every day!

When you are living the slow, steady path with all of the setbacks we see, it’s hard to see that your child is going forward! It’s happened to me, many times. You get so blinded by the long lists of what they can’t or won’t do, you forget there is a long list of what they can do! (Personally, this is one reason I hated IEP meetings so much. They were always about what Casey and Rob couldn’t do – not what they could! I thank God that their teachers always started with the list of awesome things they could do to start off. I wish all teachers could do that!) You forget that last week, he couldn’t make his bed or she couldn’t rinse her hair.

You forget that you couldn’t let go of their hands for fear they would take off. You forget that they can shower on their own and fold their clothes. You forget that they say “Hi” and name the person they are talking to. You forget that they stand for the flag and the National Anthem. You are too busy remembering he can’t tie his shoes and she can’t count money.

I encourage each of you to stop thinking about the can’ts for a few minutes and look how far your child has come. Enjoy every single one of those baby steps forward – shout it from the rooftops! Brag on Facebook! Send out texts – let everyone know about the steps forward! Those little steps are just as important as the big ones – and acknowledging those steps will keep you going during the rougher times.

Maybe one day, you will be able to sit by a fountain as your daughter explores the area and your son quietly relaxes in the shade. Nothing is impossible! 🙂

Posted on

How to Find a Safe Place for your Adult with Autism

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.

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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!
  7. 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.
  8. 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.

Posted on

Autism and the Wandering Child

It was in the news again the other day. Another child with autism wandered away from school. The scary part was that he left the school and it was an hour before they knew he was gone. From what I understand, they only realized it when his mom called and asked where he was. The teacher was a substitute (not an excuse, however!) and he left.

He was found by a kind stranger who got him to safety after he crossed a busy street in front of her. When he couldn’t answer her questions, she called the police only to find out no one had reported him missing. As she waited for an officer, she posted his picture on Facebook and a friend of hers happened to be the boy’s mom and contacted her. Can you imagine finding out on Facebook that your son was missing?

I cannot even begin to imagine how that mom felt. I would have been beyond furious – especially when I discovered the school didn’t even know he was missing, yet – and it had been an hour! The anger and the hurt and the fear – this was a place where her child was supposed to be safe!

I understand how quick kids can be – even typical kids! Kids with autism can be determined and typical things (such as locks) may not deter them. I was lucky. Casey wandered off the school playground once but her teacher was right behind her. Rob left the yard once. We live across the street from a ball field and for a while, he loved nothing more than carrying his bat, ball and glove around. He saw a bunch of boys playing, grabbed his things and crossed the street. (I had stepped into the garage for less than a minute!)

Neither on mine tried to leave the house at night. I know so many people with autism are wanderers and nighttime does not deter that. Nor do locks. I have heard many people say there is no way they can get out of locked doors and I can tell you – they can. They seem to understand how the lock works and how to open it. Don’t believe me?

I had a bicycle lock that had four numbers you needed to line up in the correct order. I never let either of the kids see the front or back of the lock as I opened it. It took Rob less than three days to pick that lock. I had no idea how he did it until I bought a combination lock. I was sure he wouldn’t be able to figure it out. A few days later, I saw him holding it and studying it closely as he turned the knob. The lock opened in his hands. I still don’t know if he heard it or if it jumped a little when the right number was found.

I gave up with locks like that and began to use ones with keys. The funny thing is – he will look at the key and not pick it up to use it. Casey, however, can smell those metal keys. No matter where I hide them, she finds them. I carry them with me when I need to. When I ask how she finds them, she laughs. I guess she isn’t interested in giving away her secret ability!

I know many families who have alarms on bedroom doors and doors that lead outside. The doors and windows are locked up tighter than a maximum security prison and still the person with autism can escape. It’s an uncanny ability and one that scares parents to death. How can you keep a child safe when nothing will stop them?

There are many systems available now where a bracelet or anklet is put on the person with autism. This bracelet makes it possible to track the person and seems like an amazing invention – except that many people will simply remove the “can’t be taken off” item and leave it. I have no doubts that Rob would take off anything like that that I tried to put on him. Casey might leave it on if I tell her it’s jewelry. But it’s hard to depend on a system when you aren’t sure if your child will leave it on.

Wandering is one of the scariest things about autism. People with autism are drawn to water – to places that aren’t safe. And, most of the time, they won’t answer when someone calls their name. To be found, they need to be spotted, not heard. I know how quick my kids have been (and still are!) and every time I leave the house with them, I probably look like a secret service person as I constantly watch where they are and what might attract them enough to cause them to leave my side. It’s hard to relax when you need to be constantly on guard.

I can understand how a child can wander from a school. I know they are quick. What I can’t understand is how a school can not know for an hour a special needs child is gone. Don’t they have procedures in place as the students walk from place to place? When we walk our preschoolers to the bathroom, we count when we leave the room, when we get to the bathroom, before we leave the bathroom and when we get back. Why wasn’t that class counted? Why wasn’t the teacher warned he may wander away?

Playing the blame game helps no one – except that talking about how easily a person with autism can get away might make more people aware of the problem. Maybe they will be more aware and more watchful.

Posted on

Autism, Discipline and Manners – Is it Possible?

Autism, Discipline and Manners

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.

 

Posted on

Autism and a Mom’s Fear of No Fear

Autism and a Moms 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!

 

Posted on

Autism Moms (and Dads!) – Follow your Gut Feelings to Help Protect your Child

Autism Mom - Follow your Gut to Keep your Child Safe

When your child is non-verbal or can’t communicate easily, one of the biggest fears of parents is that someone will mistreat or be mean to their child.  I know that feeling well – and a video I saw last week brought those fears back to the surface.   The video showed a bus driver clearly mistreating a young girl with autism who wouldn’t get off her bus.  To make matters worse, an aide was standing outside the bus waiting for the child – and she left when the driver closed the door.  Why in the world didn’t she get on that bus to help that little girl?  Autism moms, let me tell you – had that been my child, I would probably be in jail right now.

I don’t condone violence.  At one point, Casey had a teacher and a principal that were not a good match for her.  The details are deep in my heart and I’m not sure even Mandy knows what really happened.  She was just a little girl and may not have understood, anyway.   To say I was angry at the teacher is an understatement.  I wanted to smack her – to beat on her.  I wanted to do to her what she did to Casey.  I hated that woman – and came to severely dislike the principal that couldn’t see what was happening.

We were advised to sue the school district.  Even the superintendent knew we would win.  We chose instead to remove Casey from that woman (actually, the school moved her – Casey stayed in the room she was familiar with.) and not take legal action.  This was our choice for many reasons – but when I think about that woman retiring with a full pension – and the other children she may or may not have been abusive to – I am angry.  I am beyond Mama Bear angry.  But, it’s over and done and I can’t change it.

But I can be more careful about the people around my kids.  If Casey or Rob seems to not like someone, I keep a close eye on that person – and keep the kids away from him or her.  I’ve told you before how quickly they “read” people.  It’s always interesting to me to see who they don’t like and wonder what is deep inside that person that the kids can sense.

I listen to my gut feelings now.  If something seems “off” about a situation, I check into it.  If the kids suddenly don’t want to do something or go somewhere that I know they enjoy, I find out why.  Several years ago, there was an issue that concerned me and I just started dropping into where they were and checking on them.  Mandy and my parents would stop in, too.

A few years ago, Rob was involved in an incident.  The details aren’t important now, but what is important is that it shook the trust I had in people.  I understood the staff’s frustration, as I know either of my kids can act up (I’ve never been a mom who says my child would never…  I’m sure they would!)  What I was the most upset about is that I wasn’t told about it until I started asking questions.  Casey kept repeating a phrase about Rob and he was upset.  Unfortunately, by the time Casey got the words out, it had been a few days since the incident.

Rob finally was able to say a word or two and another mom contacted me because their adult child was a witness and had told her what had happened.  I confronted the issue and it was taken care of.  My gut told me the day it happened something was wrong – Rob was just off and Casey was wound for sound.  But, I didn’t follow up on it right away.  (No excuses – except maybe I was just so darn tired of autism)  My gut kept at me and I checked into things.  That situation is resolved and I’ve asked to always be told right away if something happens while the kids are at work.  (Like I said, I know things happen – I just really hate not being told what’s going on!)

Even if your child is non-verbal, you will see signs something is wrong.  Maybe they get upset about getting on the bus all of a sudden.  Maybe they won’t eat at school.  Maybe they can’t sleep at night or a new behavior emerges.  High anxiety is a possible sign of a problem somewhere.  It’s hard to know what the problem might be until you start digging.  If your child refuses to get on the bus, start with the driver – has something happened?  Was there a change in the route?  Is it too noisy?  Ask the other kids on the bus – or their parents.  If the bus has a camera, ask to watch the video.

As your child with autism grows up, you will learn to become part private detective.  It’s exhausting at times, but a necessary thing to do.  Visit the school.  Become friends with your child’s teacher.  If you have concerns, voice them.  Most teachers are wonderful, but there are always a few that aren’t.  If you don’t think your child’s teacher is a good match for your child, speak up.  Talk to the teacher – talk to the principal.  No, these are not easy conversations to have, but you have to do it!

Drop in your child’s class/school.  If you are told this isn’t possible, do it anyway.  You have the right to see your child at any time.  If a school refuses to let you visit, that’s a giant red flag – always follow up on that!  Take someone else with you and go!  (if a situation gets tense, always take someone with you  when you go – a witness might be needed)  Climb the chain of command if you need to.  Schools want only the best for their students –  if a teacher is a problem, they want to know.  (at least, good schools do!)

You know your child the best.  If you get a weird vibe that something is wrong, don’t ignore it or assume you are just being over-protective.  So what if you were wrong?  You laugh about it and move on.  But – what if you are right and you do nothing?  Your child can’t help themselves – you have to do it.  Do whatever you have to do to make sure your child is safe.  You might realize he/she is only anxious because puberty is starting or they are going to go through a growth spurt.  Or you may save them from a traumatic situation.

Trust yourself.  Trust your instinct.

Posted on

Autism and Your Child’s Safety

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.