Safety Solutions For Autism and other Developmental Disabilities

After our big scare the other night I have upped my previously tightly secure home to that comparable to Fort Knox.  In doing this, I thought others might be able to benefit from my research, especially parents to kids that are newly diagnosed.  Our lives are often so busy that having the time research and put together the proper resources can be a daunting challenge for parents. So, below I have listed a few things that can be done to help make life safer and less stressful for for autism parents.

Items shown below are examples only and not necessarily promoted for brand or site.

Alarms and Gadgets For the Home:

Wireless Door Alarm/Chime This is what we have and it works well, installs without tools and the chime (receiver) can be plugged into any room you choose, or even unplugged, if you want to silence it for a short time.  I can hear it on both floors of our home.

Wireless Window/Door Alarm  This is what we bought for the windows.  We bought the 3 pack, plus door.  I haven't used to the door alarm yet, but plan on putting it on our back door.  The alarms are interchangeable, as far as I can tell (meaning you can use them for either windows or doors) and are very, very loud.  So far, they have worked well. Beans has opened the windows a few times, and the alarm definitely let is know!


Baby Monitors  I know this one seems to be pretty much easy to figure out, but I thought I'd list it anyway. I use one that has more than one monitor, so that I can put it on different floors and rooms of the house. That way, I can always hear what's happening in the next room.  Even though my youngest child is over eight, I know that I will need to keep utilizing monitors for many yrs to come.

Baby Gates  This one is one that not all households will need.  I have 4 in our house, one to guard the upstairs, the kitchen, the bathroom and utility room.  Any of those places could be dangerous if Beans got in unsupervised, even just for a few seconds.

Furniture Straps These are a must.  We used them with Bubby, who was a serious climber, and now for Beans, to ensure nothing heavy ever falls over on him. Very inexpensive and well worth the peace of mind.

Cabinet locks The ones in the link are the exact kind that we have.  I bought some when my daughter was a baby to lock the fish aquarium cabinet and I am still have and use the same ones today.  They've lasted a good 13 yrs and she still can't get them undone when they're on tightly, none of my kids can!  They're not convenient, but they will keep your kids out of any cabinet you put them on!

Screen Door With a Deadbolt The screen door in the picture is the one we own.  It's very difficult to unlock, but not impossible for Beans.  It's pricey, but worth the money.

Identification and Emergency Awareness:

Medical ID Bracelets   I ordered one of these for Beans with the first clasp option, as it looks the hardest to undo.  On the front I have his first and last name, Nonverbal Autism, and on the back our address, and family cell numbers.

Short range child locator 

Temporary Tattoos 

Child Harness We don't have to use ours that much anymore, but there was a time when it was necessary for Bean's safety to use a harness.

My husband and I also made a little info sheet with Beans picture on it to take to the local police station.  It just basically says his name, address and states that he is nonverbal/ autistic.  We live in a very small town and just assumed that all the officers around here (all 4 or 5 of them) pretty well knew who we were. The one on duty that found Beans was new, so we thought a little info sheet for the police station would be a good idea.

Also, if you live in the US you should go to This Site and fill out a profile for your whole family.  Smart911 is a wonderful site that allows you to already have your address, detailed instructions to your home, your vehicle and plate number, as well as a photo and details of every member in your family already on file, so that in an emergency emergency responders can already have this info without wasting precious moments for you to fill them in.  There is even a place to put special instructions.  I put a few things, like Beans loves water, so in the event of him wandering they can know that info ASAP and begin to search near water. There's no time to waste when you have a child with no sense of danger wandering by themselves.  Smart911 allows you to share vital info with first responders without you having to verbally relay this info, thus saving precious time in the search for your loved one.

I had these stickers made for our front door, the boy's window and both sides of our van window.  This is mostly to warn first responders in case of an emergency that there are special children involved that need special care. I know that in the event of a fire it's unlikely Beans would try to leave the house, or respond to a firefighter coming to rescue him.  It's likely Bubby would, but then would not think to alert anyone that his brother is still inside. The stickers were only like $5.00.  

My mother in law made this shirt for Beans.  It's a good idea for when you might be going out to the zoo, or somewhere where he mat get lost in the crowd.  Though, the print came off after a couple of washings.  I'm thinking that if one was to get these made it would be best to go to a professional.

Coping Skills and Stress

I read an article about How autism parents have stress that's comparable to that of combat soldiers   a couple months ago.  At that time, I was upset and in disagreement with the sentiment the article stated.  This was before Bean's jaunt about town the other night.  Since then, my attention has become centered around safety, even more so than it was.  I promised a blog post about some safety measures to help with children who elope, and I will get to that, but for now, I can't hardly organize my thoughts to write this rambly post.  I think it gets to a point where one has been operating on such a high level of stress for so long that that becomes the norm for them.  I think that the other night was one of those moments where I was pushed even beyond that 'norm' and into a space that I have been unable to cope as well with.  It almost feels like my coping skills were like a game of Jenga.  My structures we constantly being tested, but I was able to readjust and keep things up. Until that one piece that caused the whole thing to fall down.  That was the other night for me.  The other night was the one piece that compromised my whole coping methods and since I have been reeling with what feels like everything crumbling around me.

I always try to write about solutions to issues that autism might present, either firsthand, or even for parents of ASD kids.  I try to be sensitive to the fact that what I write might bring up spirits of those reading, or bring them down.  I feel that there is plenty of the latter in the autism community, so I try to keep on the more positive side.  I'm just not feeling it this week, though. I'm tired and I'm worn out.  Not just from my kid's autism, but from my own and life in general.  Finances are still really rough here, causing friction, as it tends to do when there's not enough to go around. My husband and I are stressed with all of that to the max, which lends itself to us fighting with each other.  My tower of well placed blocks are tumbling down.

I now realize that much of this stress has been accumulating for quite some time.  I was just unaware of the strain.  After a particularly bad day I called my mother in law for support.  (Since my own isn't on speaking terms with me) Bad idea.  She basically just told me to change how I think about my situation.  If I just changed my perception, then it wouldn't be so bad. She also told me to take a vacation.  No offer of help to do this.  Just that I probably need one.Wow, how ingenious.  Never would have come up with that little effing gem on my own.  I've only had 2 vacations in my whole life and neither have been in the last 9 yrs and none have been alone with my husband. I've never had one with him, not even a honeymoon.  So, I was left even more depleted than before I had called.  It is clear to me that probably one of the things that drove my husband and I together (married 14 yrs yesterday) is the fact that we are both almost completely invisible to our families.  It's a sad commonality that we really can't figure out the reason for, other than we aren't dysfunctional alcoholics that make up drama to fill our lives, like much of our relatives.

I guess this is all part of life.  We live and we learn.  We devise coping skills as life hands us more to cope with.  I am trying to build healthy ones that will allow my life to grow in a positive way, but right now that's hard for me to see from where I stand.

The Scariest Words An Autism Parent Never Wants To Hear

Ask any parent what the scariest words they can imagine coming from their spouse's mouth that pertain to their child and one of the answers is likely to be "I can't find _____" (insert child's name).  This is especially true of you're a parent of an autistic child.  I had the unfortunate experience to hear this the night before last.

Let me start from the beginning.

Sunday morning started off well. My father in law was in town and wanted to take us all out to do things around town.  My husband let me sleep in while he got up with the boys, and even went to go get doughnuts.  It was looking to be a pleasant day.

We got into town and settled on eating downtown.  The boys were less than thrilled and Beans especially didn't care for the venue change.  When I say venue change, I mean not fast food.  :)  Bubby could not handle that there was no plan to speak of, and was instructed that he was to let others make the plans for once, by Grandpa.  He always gets to do what he wants, and it was someone else's turn. We got through lunch with Beans picking at his food the way he always does, but not eating much.  Bubby asked upwards of 20 times (in different ways) if we would pleeease go to a museum. Beans and museums aren't a good mix, so we were unable to honor his request, much to his dismay.

We went to a few places and did a bit of window shopping, while taking turns staying in the van with Beans, in the places he finds too noisy or overwhelming.  When we arrived at the mall I thought it was a good place for him to finally get out a bit and enjoy his day.  He typically likes the mall.  However, he remembered he does not like escalators, and the first store we went into had one.So, I had to carry all 55 pounds of screaming Beans out of Sears to the van with onlookers wondering (I'm sure) if I was a kidnapper.

By the time all was said and done when we got home it was almost time for bed.  The first thing everyone in my family does when we get home from a long day out is scatter to spend some time alone to regroup.  After that it was late and definitely time for baths and bed.

It wasn't long after putting the boys to bed that I hear "Mom, Bean's stinky!" Which is pretty common. No big deal.  Except this time Beans decided to get naked before pooping.  It was a pooptastrophe and it was everywhere.  I handed him off to Dad to get cleaned up and I scrubbed the carpet and the heating vent. Yes, he pooped on the heat register. We got it all cleaned up and put him back to bed at about 10:30.  I had to go back in a time or two to tell him to get to bed, and give Bubby a drink.  But, relatively quickly after there was silence.  I thought Beans had settled in and gone to sleep, as it was late.  My husband and I watch TV for awhile and decide it's time for bed at about 12:30.

We go to do the routine nightly checks on the boys before bed.  Usually to uncover faces, and make sure Beans has his blankets on him.  Then I hear "I can't find Beans" from my husband.  I think to myself, what do you mean you can't find him?  I go in the room expecting him to be curled up in the corner of the bed with blankets covering him. I quickly find this NOT to be the case as I remove all the blankets from his bed. Then, I turn my head and see one of the most scary things I've ever seen in my life.  The window and the screen is open. I yell "The window is open!" at my husband who proceeds to try to run so fast through the house that he falls down and gets hurt several times.  He is not calm in emergency situations.  We get outside, in our robes, barefoot, in the cold running around calling for Beans. I begin heading for the backyard, because that's where he often goes when he runs outside. About as I am to turn the corner I see a police car driving down the street.  My husband and I begin running for it, yelling "I lost my son!"  When we finally get to the car, the officer replies "Is it this one?" We say yes and he asks if he's autistic.  I'm so dizzy and out of breath I can almost pass out in the middle of the street.  I don't think I've ever been so scared in my entire life.

The officer brings him in and explains that he was called to the next street over about an hour and a half ago because he was found trying to get into someone's house.  They opened the door and let him in, then called the police.  I so appreciate whoever did that! The officer brought him back to the police station for awhile, then decided to drive around the area he was found to see if any doors were open to indicate maybe where he had come from.  That's when he came across us. He asked us if Beans was always moving like he was at the station and when he brought him home, and we verified that yes, he never is still.  He always moves and is always into things.  The officer said he couldn't keep up with him very well at the station.  I'm guessing he thought that he could take him to the station and write up a report, and found out that was not possible in a room that's got much of anything in it. I'm sure he was knocking everything off of desks and shelves and trying to leave.  Trying to eat any plants, paper, or whatever he could find.  We live in a very small town, so I doubt there were other officers around to help much.  There's not too many on duty at once. I think the officer had enough experience with Beans to have some empathy as to how he could be more than a handful.  I was so worried that they'd think we were awful parents.  He remarked how many gates we have in our house and extra locks.  We thought we were on the up and up in safety.  Guess beans found the weak spot.

We purchased window alarms yesterday.  I don't know if they'll work or not, because he keeps removing the sensor, which does set the alarm off.  I know when he removes it, but I don't want to have to be constantly reattaching the alarm everyday, and him getting his ears hurt by the shrill sound of it.  I wish I could say he was more cognitively aware of the fact that removing the alarm is going to hurt his ears, but I'm not so sure he'll get that cause and effect.  Maybe, he will.  I'm still considering other safety measures for his window, and a few others he can get to.  I will be doing an entry next on all of the safety precautions that we have done so far to help others (especially newly dxed autism parents) put together a safety kit. You can find that entry here.

This is far from over as Beans ability grows and he learns new skills, but remains unaware of danger.  I am astonished that I have sent out e-mails for help in finding him a medic bracelet that he can wear, but not remove and I'm met with a lot of "i don't knows' from people like his autism specialist and developmental disability case manager.  This has to be common in the autism population, especially those that are severely affected by their autism/and or intellectual disability.  There is nothing in place at this time to help our children if they are lost.  More about all of that in my next entry about safety.  I am just glad that ours was a happy ending and my handsome guy was returned safely to us.

Awkward Encounters

I saw this and thought 'Oh how I relate!'  I think that many people do this on and off the spectrum, but I know that I personally take it to another level.

Being able to converse in a social situation is not natural to me.  For some people, it can be, but it depends on the person and the situation.  I have 'faces' I put on for specific places and people.  There are different rules for how one behaves at work, or at a casual lunch with friends, for instance.  These rules are not instinctual for me, so I have to cognitively list them, which in some ways very much feels as if I am putting on an act.  It's not natural, or intuitive. 

I explain it sort of like this.  In my head is a big, big rolodex full of pictures that represent different social situations.  When I go to an IEP meeting, I find the card that has the appropriate way to behave and look in that situation, for example.  I overlay this with other clues that I can roll around and access by proxy of each other to come up with the proper things to say, wear and so on.  I mentally have to prep myself.  I pick what to wear, what might need to be said, and get a feeling of what to expect.  If the situation is new, I might try to do some research beforehand to acclimate myself.  If I don't have that sort of time I might try to quickly access the closest 'card' that I have currently on file in my head (experience) and apply the rules from that one. 

So, for most people I'm sure that I seem like I am 'normal'. My hair is nice, my make up is on, and my clothes are arranged well in moments where appearance counts.  I think that often times I may even seem to be more on top of things and together than others.  It wasn't by accident, or due to me wanting to upstage.  I'm most certainly not more together than the average mom, because I have some super power.  It's because having all my ducks in a row, lots of prep and lots of order is the only thing that allows me to do what I do.  This is my way of coping.

So, imagine what happens when I am minding my own business in a public place and I see someone I know.  The routine is different and the context is off. This person is not supposed to be here in this environment! My brain scrambles to make sense, and in this moment I flee.  It's not that I don't want to have smalltalk, because I dread the drudgery.  The person I see may well be someone I like and want to talk to, but they don't belong here and I can't find my script.  I know that if they try to talk to me there is a 50% chance I'll go mute and be unable to talk.  The other 50% is okay, if my brain can align itself quickly enough to access the proper 'card' for this person.  Words in social situations aren't free flowing.  They are (unless I'm totally comfortable with the other person) hard to come by and rely heavily on pre-written scripts.  So, I will, if I think I might get away with it hide, or at the least pretend I don't see them so at least they have to be the ones to take the lead in the conversation.  I'll dive around corners and grocery store aisles in my attempts to not have to converse. I know that I have been caught trying to avoid people in these sorts of situations and it hurt the other person's feelings.  I never meant to and I hope that if this ever happens to you that maybe you'll give the other person the benefit of the doubt that maybe they are struggling with a social issue and not take it personally.

What The R Word Means To Me & My Family

Today is the official pledge day for Spread The Word To End The Word so I thought I'd like to do an entry about the R word and what it means to me, and my family.

As most of my readers know, I have two sons on the spectrum.  Only one has an additional diagnosis of a cognitive delay. When Beans got this diagnosis at age two I assumed he may eventually grow out of it, or things might change.  The developmental pediatrician didn't really explain to me what this meant, other then he was delayed in all areas.  I didn't think too much about it at the time.  I accepted him as he was, autism and all.  Not a big deal.

Then one day about a year or so ago, I happened to be waiting with my kids in our regular pediatricians office.  It was a lengthy kind wait. My eyes drifted over to Beans chart on the counter.  It was considerably bigger than the other two kid's charts.  I couldn't help but wonder what was inside.  I assumed nothing of all that much interest.  I decided to peek.  I came across the developmental pediatrician's report. I quickly began scanning it with my eyes.  I quickly felt my stomach drop as I saw the words 'mentally retarded',  'challenged', 'significant' and 'functioning' peppered though out the report. I could hear the doctor's voice coming down the hall, so I only got a small sampling of words before quickly shutting the folder before she entered the room.  This was not the report the dev, pediatrician had sent me.  It was not it at ALL.  I knew my son was delayed.  I knew that he seemed different then all of the other kids with autism I've met, but I had not thought that he was tagged as with an intellectual disability.

That night, I told my husband about it.  He was nonplussed.  He said he understood that the the day we had left the office 5 years ago.  I guess the doctor had probably said it, gently, between the lines. Cushioning the truth the way many NTs like to have it.  I was not able to infer this truth. I was not in denial, but I was not fully aware of our circumstances, either.  It didn't really change much for me after the initial realization.  Beans is still Beans.

I know that when most people use the R word they are usually doing it in a way that is making fun of themselves.  I used to be one of those people. (Not proud of that, but there ya go.) I know that most decent people would never call a disabled person like Beans a derogatory name.  I know most people aren't that awful.  I also know that the language we use reflects on the people that hold certain labels and statuses in our society.  Think about it this way. Think about every time you might be tempted to use the R word.  Maybe you made a mistake and said "I'm so R worded."  Or maybe something looked funny, or didn't work, or was wrong, or was defective.  The R word = those things, and my son has an intellectual disability that technically means the R word.  What if your name was replaced with the R word.  What if when people saw something nonsensical they said "That's so ______"  (fill in the blank with your name.)  What would the public's perception of people named _____ be?  Would who you are be affected by this?  Would you like to be equated with all these 'bad' things?  What if people said to you, "but I didn't say YOU were dumb.  I said the X was dumb.  Why do you take things so personally?"  You would probably know that they DID say you were dm,b, bad, wrong whatever indirectly by using your name, who you are to describe something unwanted, or bad.  This is what this sort of language feels like to those that are intellectually disabled, and the people that love them.  This is why it's harmful.

I want to leave you with a short video that I took of my son last night.  I was playing one of his favorite games with him, peek a boo.  He just loves this game and could play forever.  His smile and laugh is incredible.  Think of this face every time you think of using the R word.  Think of who you are hurting with your language. He is none of those negative things. He is beautiful.



*Sorry for the poor quality of the video.  It's a new camera and I was just trying it out.