In the Blink of an Eye... Wandering

Today I'm going to talk about an important topic in regards to ASD's, something that gets extremely little press: wandering. It is a reality in our life, and many others with children who are on the spectrum.

A few months ago Daniel slipped under the garage door (which was only opened about 6"). He was gone within seconds of me turning around to get something. When I realized he was gone (about a minute later - if that), I opened the garage door and he was nowhere in sight. Nothing has ever made my heart pound so hard, my body immediately get hot and feel so sick to my stomach so quickly. We live in a gated community, but, your mind goes in every direction. Which way did he go, is there anything he can fall into, is the gate open, etc.

After checking and notifying my husband he had slipped under the door, I called my sister (who, thank God, live 2 doors down). They, along with my nieces and brother-in-law fan out. Going down the inner courtyard - between two streets - they found him quickly. I was beside myself, looking from the garage so I could stay close to keep an eye on Anthony. Then I see him appear between the buildings and luckily my sister saw him, called his name, he turned to her, smiled and ran to her. She scooped him up and gave him to my husband, who brought him home. Then, about a few weeks later, he learned how to remove the child safety doorknob and tried to get out again. Luckily we caught him. We have since purchased a gps unit called the "pocketfinder". It's relatively inexpensive: $149.95 + tax & shipping. There is a monthly fee of  $ 12.95 for the first unit, and less for each additional one.This is available at:    http://www.pocketfinder.com/

                                                    

We have attached a unit to our boys' pants when they leave the house. We clip it to a side, back belt loop and tuck it in their rear pocket. (Luckily they're currently wearing jeans). We like this unit because we can track them on our smart phones, iPad/iPod or the computer. We can set zones so that if they leave an area, we will receive a notification via text message.  As you can tell, I am quite taken with this unit.

I have learned that kids with asd (Autism Spectrum Disorder) will generally head for somewhere they normally go with someone else, to something they've seen that caught their attention and really want to go to. Then, maybe something catches their eye, or they get turned around and end up far away before anyone finds them. As parents of children on the spectrum we know that you have to constantly watch our children, but we've also learned that it only takes a few seconds of distraction for a little one to slip away. We know that no matter what we do, we cannot watch our children 24/7, at the very least, you have to blink. That's how most wanderings or missing kiddos happen... in the blink of an eye.

Since this has happened to us, I have researched all I could on ASD (Autism Spectrum Disorder) wanderings, elopements, escapes, runaways... whatever you want to call it. What I have found is quite alarming to me. Several studies and articles have been written on the subject, yet the only time it seems to be mentioned publicly is when a child goes missing and makes the news. I think more people need to be made aware of the real danger, parents should be educated if they have kiddos on the spectrum to be aware of the reality that it can happen to anyone. Several surveys I've seen show:

• Wanderings begin around age 4
• Up to 49% of children with ASD will wander (elope, run away/dart)
• Almost 1/2 - 53% of those children who wandered were gone long enough to cause concern
• Almost 1/4 - 24% of the kiddos who wandered involved close calls with drowning

The good news is there is a lot of information and products available that can help reduce the risk of wanderings. A few ideas we have implented are:

• a double keyed deadbolt - so you have to have the key to unlock it from the inside, and we keep the key hung up out of reach of our little ones
• as noted before, we have gotten the GPS units for when they leave the home
• we have an alarm that we can set that will go off when a door or window is opened
• we have a "tether" that we can use which attaches to the kiddos to help minimize "darting/running" away

I have found out some smart recommendations to help us be prepared in the event that either of our boys - "wander" and we need help:

• contact your local police department and let them know that you have an autistic child in your home that has a tendency for wandering
• always keep a current picture of your child handy, if you have a phone that has a camera, keep a picture on it  - like we don't already   :)
• keep the numbers of your local news stations written down
• keep a list of the local pools, water areas that your child may have access to noted
• keep a list of your child's favorite place to go
• VERY IMPORTANT FOR YOUR CHILD: let the police know what calms your child, so they may get your child to come to them so they can be brought home (a stuffed toy, a favorite food, etc)

We even have medic alert bracelets on our boys that shows their medical issues, allergies and we have noted AUTISM on them as well. On the back we have our emergency phone numbers. The truth is we all do everything we can to keep our little ones safe.

A smart person once said: "An ounce of prevention is worth a pound of cure." Stay safe and spread the word.

God Bless.

ABA Basics

I've mentioned ABA (Applied Behavior Analysis) before and a little about what it is. Short of a little miracle - for parents, is the science of controlling and predicting behavior. The person who came up with it and how to apply it, truly was inspired and blessed. It is a process that is amazing to watch, and when you have good behavior instructors working with the kids, you can learn almost as much as your children. We have been blessed to be working with a company, Holdsambeck and Associates, that not only allows but encourages parental involvement. I realize that we are blessed so that I am able to stay home to teach, learn from and raise our boys. I have learned more about how to deal with them as a parent in the past two years with ABA than the almost 5 years they have been with us.

Watching the instructors work with the boys - they have a remarkable amount of patience - and I have learned so much. I have been at my wits end with each of the boys as to how to discipline them. During the foster/adopt program we went through every class you could imagine available at the local colleges on child rearing and discipline.  It is not at all the same as disciplining a typical child. We have tried time outs, reverse psychology, taking away items - most turned out to be a joke in our case. Truth be told, none of them worked in any way shape or form. The only thing that has worked, I learned from the ABA. They reward good behavior, firmly say no to the bad unwanted behavior, and redirect them back to what they are to be doing.

                                                                                

Another thing I learned was from another behavior instructor, from another department of Holdsambeck, and that is we need to remember to acknowledge good behavior when we can. If your child(ren) are playing quietly in another room, and of course if they're too quiet you check on them (just to be sure they're not doing something they shouldn't be) - if they are playing nicely, acknowledge that. You can say something like "good playing quietly" or "nice playing" something positive to acknowledge that you know they are doing good. To often we punish the improper behavior (and of course we need to redirect their behavior), but most of us forget to acknowledge when our kiddos are being good.

The wonderful thing about being involved with the work your kiddos are doing, it allows you to either relay information your ABA - Autism Clinical Coordinator, school and your family. Even better, get your teachers and ABA coordinator together - at least at an iep meeting. They can always fill the teacher in on what they see from the data, and the teacher can fill in the ABA coordinator on how the little kiddos are doing in class. You learn how to deal with your kiddos and you learn what they can and can't do, what's new that they need to work on and what needs to be worked on so they don't forget what they've learned.

So much information to process, so many terms to learn, so many processes to - well, process. There is always new terminology, all kinds of abbreviations, and so many different programs to research. The best thing to do is take it one step at a time. Learn like you did in school - one step at a time. With ABA in particular (and those who generally work one on one with someone on the spectrum) instructors will use different "trials" to work with. Each has it's own purpose. The ABA teaching methods, in our case, are Discrete Trial Training and Naturalistic Teaching.

• In discrete trials - there is a beginning, a middle and an end. I was taught to remember "A,B,C" which stands for Antecedent (request - "touch your nose"); Behavior (The child does or doesn't do what is requested); Consequence (Reinforcement - either "good job" or "try again" sometimes the reinforcer is a preferred object to work for, so they either get it or they try again)
• In Naturalistic Teaching - the instructor interacts with the child in a spontaneous and individualized way, so that they interact verbally in a naturally occurring activity in the child's environment

There is a lot more to these teaching methods, but these are the basics. I'm sure I'll write more about it later as it comes to me, as being relevant anyway.    :)

In Our Own Time

Did you ever wonder why certain things happen quickly and others seem to take forever. Personally, I think that it all happens as we can handle it - whatever the circumstance is. For instance, Daniel regressed almost literally overnight. It was like he went to bed this blossoming little boy trying to communicate and learn. Even starting to learn - and awoke a completely different person. Though he had exhibited autistic tendencies before this, it was not as "in your face" as it was after the regression. Virtually everything he had learned up to that point was gone. It was as if we were being shown a movie that gave clues to the ending, so it was more of a "I thought that's what was gonna happen".

Then with Anthony, we saw a completely different beginning. It was like wading into the water at the beach... you put your toe in, then your foot and knee, and before you know it the water is over your head. There were some similarities to Daniel's characteristics, but not enough to connect the dots right away. We figured it was just the "twin thing". You try to accept the initial diagnosis and work with it, but you have this nagging inside that you've seen this before. The difference was, with Daniel - he had a lot of the autistic tendencies from early on... Anthony's seemed to develop slowly. So slowly that some psychologist (who hadn't even met Anthony on anything other than paper) was sure he had Childhood Regressive Disorder (or Heller's Syndrome). This shows some of the progress of symptoms that we saw in Anthony, however, many did not fit.

As Daniel and Anthony have grown into little boys - it's really interesting to see the differences in how autism affects them. One of them is virtually non-verbal, the other has verbal skills, but not a lot of communication skill. Though they are identical twins, they have so many similarities and yet, so many differences.

                                                

                          

Everyone I have met that as a/or child(ren), a family member, or a friend with someone on the spectrum has a different story to tell. Like a snowflake, everyone has a different experience, the same result... each person must basically become their own encyclopedia on autism. When we first learn that our child is on the spectrum, we read more in a few weeks than we've probably read in years. Devouring every item that mentions autism that we can find, trying to decipher which items are true and which are rubbish. Does a special diet really help, does my child(ren) need a special diet, who do I see about it? We learn there is only so much information available on the causes that have been "verified" and many more theories which have not. There are many "treatments", but no cure.

We each find out in our own time what will benefit, where to look, who to talk to... so it goes on and on. It is truly a "learn something new every day" world for those who deal with someone on the spectrum. I think we are guided most by our children, encouraged to move forward with eagerness. Learning from them what they already seem to know... life goes on and you may as well not be distressed because in a moment it changes.

We must realize that what we learn one day may change the next. It doesn't mean what we learn at any point is irrelevant, it simply means that it may be updated. Sometimes information is true and sometimes it is simply a desire someone has for it to be true. Read, read and read some more. Learn as much as you can since you are truly your child's only (unconditional, always putting his/her interest first) advocate. And become an advocate for autism, pass on your knowledge, encourage others to learn about autism. Someone else is ready to learn.

Cherish the Time...

The boys couldn't wait to get back to school, and it was very strange for me, knowing they needed to get back to their routine, but I didn't really expect the urgency that came... 15 minutes before we were to head out the door Monday morning, Anthony was asking over and over for his jacket. Daniel was right beside him - looking on expectantly. I find it amazing how you can all be so ready for school to be back in session, ready to go back to your routines, and yet yearn for that time off together. Stir crazy or not, days seeming to go by so slow, and still when they end it's ... "where did the time go?"  It seems like that happens with most things in this life. Waiting for the baby to roll over, sit up, begin to talk, begin to walk... and in what seems like a second, they are becoming their own person, going to school. As typical kids, we are always waiting for the "next" thing. To go to school, to ride a bike, to be a teenager, be 16, learn to drive, and so on. We are constantly looking forward instead of enjoying or learning from the "now".


All the years spent praying for, trying to have children, the tears, the disappointment month after month, year after year. We could be bitter, and I admit there were times that I was, but I learned to be hopeful in the midst of it. I learned that by allowing dreams to die, you die with them - I refused to let that happen. I found many things that I had to be thankful for in the process.  All of it melted away... because of two beautiful boys, who came into and blessed our lives by filling the space that was empty. It's so amazing how the bad things in life have a way of melting away when they are replaced by the wonderful things that were meant to be from the beginning. For us, it reminds us of how God works in our lives. It eventually teaches us something that we may not have known before, or needed to be reminded of something we had learned before. He doesn't allow us to go through bad, sad, or devastating things for no reason... they help us to learn, grow, develop in new ways and ultimately help someone else. They remind us that all we can do is rely on God to get us through what we need to go through.

                                         

Steve and I have learned now to be content in almost all situations, not because we are special in any way, but because of all we've gone through together. We know that we are blessed regardless of how things may look at the moment, we are learning to cherish every moment with our boys. Because of their special issues, it makes it so we may not get to go out on "dates" anymore (or very rarely), we are learning to make the most of the time we have with our family. We are grateful to have two wonderful boys who, no matter what the day brings, fill our hearts to overflowing.

We would much rather have the challenges today and be able to say we made it through (one way or another), than to not have the chance to go through them at all. I think Garth Brooks expressed it best with a song he did called "The Dance". If you've never heard it, check it out, if you have - please listen again.  We all have only so much time on this earth to have experiences. We can accept them or regret them. They can be either good or bad - try to find the good, or the lesson... so that in the end, you can remember it fondly or at least be able to say, you didn't miss the "dance".

Looking Forward to School...

Well, after 9 days out of school, we finally hit the stir crazy mode, the "I don't think I can't take this anymore"... and it's not just me, the boys are bouncing off the walls dying to get back to school. We've been able to keep fairly busy, but, of course not busy enough for two very energetic 5 year old boys.

                           

The normal routine has essentially been thrown out the window, as far as school hours go. So, trying to get the boys to do some of the things they would do at school has pretty much received a big "ha-ha, don't think so". We have become plain old "mom and dad" and they make sure that we realize we are not their teachers. That doesn't stop us from trying of course. We just have to be more creative now. We will get ready and go for a walk, which will go something like this:

"Ok, get your shoes and socks and bring them to me." After anywhere between one and four times saying this, the boys comply. After helping them put their socks and shoes on, we remember that we must check their diapers. (Still working on the whole potty training thing.) We decide to get jackets - since there is a chill to the air. The whole time we are going through the naming of everything and trying to get the boys to imitate and name the items: "shoes," "socks," "jacket." Then we head out the door.
"Point to the green tree. What color are your shoes? Look, what is that... a car." and so on.

For the last few mornings the boys have actually woken up about 5 minutes before the alarm would go off for school. (Even though the alarm isn't set). They want their school routine, and try to make sure we know it. The hard part is trying to redirect them in another direction, they work hard to resist, but eventually we find a way to do something that keeps their mind off school. You would think it would be easy to keep them busy, but for autistic children, it isn't. You can go for a walk everyday and that's awesome, they love it, but you can only go so many times in one day. You can play outisde for only so long before they get bored of what they are doing. They will only ride in the car and do so many errands. The same as typical kiddos, except, they express their frustration in extreme ways. Once they go off, it can be so hard to reel them back in. When they finally calm down, they will be exhausted, and seem to have no idea why they acted the way they did. They are on to the next thing.

                          

However, with all this said, I have to admit - I wouldn't change a thing about spending time with our boys. Through the good and the bad, like most parents out there, we have more good days than bad. We only remember the bad for a little while before the memory is replaced with a good one. The times when they look at you and smile, and you see the kiddo you know to be locked inside and trying so hard to come out. Every day has it's good and bad, everyone has a challenge they must go through, and no matter how hard we wish our children were "typical kiddos" that will never be. So, we move forward and do the best for them that we can.

Now, time to start planning things to do over the Christmas and New Year's break.

Sensory Overload

It's amazing to look around at the world we live in: nature - so bright and beautiful, all the scents and textures, stores, the people, the things.... sensory input everywhere. Now imagine having so much sensory input that you can't handle it. Everything coming at you at once - like being in a store with a whole wall of tv's - turned on to different stations, and then every few feet a different scented candle is burning, and then two or three different people speaking over the intercom at the same time. That is my very crude and basic understanding of the sensory overload that kiddos on the spectrum go through every so often. Everything becomes disjointed and overwhelming and my understanding is that it is often associated with some type of physical pain. The hardest part for us as parents is that our boys are non-verbal, and getting to the place where we can understand exactly what our boys are trying to let us know can often be quite frustrating for all of us. Which of course, makes it very hard and very time consuming to figure out what they need.

                                                            

Many children on the spectrum use stimming (self-stimulatory behavior) behaviors: flapping of hands or fingers, rocking or spinning around and around. It is believed that stimming behaviors are generally used to help cope with and/or to self-regulate challenging situations. When they become over-stimulated, many kiddos need a different sensory input to comfort them... weighted items or compression, some need both. Luckily, they now have some wonderful products out there to help with sensory needs of children who need them. Especially since some children will not accept any physical contact. We have been very blessed that both of our boys allow physical contact. We can hold their hand or give them a hug or carry them if needed. I can't imagine what other parents go through that cannot use physical contact to comfort their child or give them a loving hug. For those who need them, there are weighted vests to help give constant weight holding their shoulder down. Others use compression vests which are like a nice tight hug with just the right amount of pressure. Out of all the places out there that sell the products for children on the spectrum, we have found that National Autism Resources have some of the best products. (This is our opinion because of the products that we have needed, there are many other companies out there that are perfectly good as well).

http://www.nationalautismresources.com/

There are so many types of stimming behavior that I'm sure we will address another day, because it is an issue we deal with daily in our home. Sometimes more than others.

Thankfulness... Hopefully Always

For most of my adult life I have been a glass half-full type of person, see the bright side of things, look for the light at the end of the tunnel. I have always tried to find the positive in every situation. Now, I am by no means able to do this easily every time things go wrong. However, I can very easily become depressed if I even entertain the negative. So, I have chosen to remind myself that no matter what happens, I have so very much to be thankful for:

It has been a stressful, but wonderful day. Wonderful family time and a great meal to give thanks for and enjoy. The stressful part came in when it was time to head over to Poppy's (grandpa's) house for the festivities. As most parents of small children realize no matter how much you plan, you can rarely get out the door at the time you want to. Especially when it's not for a routine event and you have tried to get moving earlier than normal. This year was no different for us... this time, as we were preparing to get everything done, my husband got a call that meant he would have to go to work for a short period of time. Even though the business was closed, he needed to go help someone who needed truck parts. Now, I admit, at first I was a little put off. We were already behind where we should have been - time wise. Even though he's compensated for these "call outs", all I could think about was: I know I can get the boys ready myself, but I'd like help. Then I realized, someone probably needed his truck to get to his/her Thanksgiving. So, I realized at that point to be thankful that my husband has a job, that we have a roof over our head, that he is able to help someone on this holiday, and that he doesn't have a job where we don't see him very often.

For all those who have children who are on the spectrum, I am thankful for the stories I read that remind me I'm not alone. I am thankful that there are growing networks to help the children and parents to negotiate the life that is the Autism Spectrum. I am thankful for the articles which explain new things they are finding every day, whether it is a new way to diagnose, to treat or just helpful things I may not have found out about yet.

I am so thankful that my boys remind me every day of a new way to see things, to realize that things that are upsetting at a certain point does not mean the end of the world. To be happy in all situations. To get upset, cry or scream, when needed, and then get over it and forget it. I am thankful that my boys don't hold it against me when I mess up and don't know something. To know that no matter what may come, with God, I can handle anything I may need to.

I hope you had a Happy Thanksgiving today, and may you be thankful every day (even when you don't feel like it).