Socially inappropriate....but working on it

Nick and I are having an ongoing battle (that he’s currently winning) about what is socially acceptable in terms of touching. There is a long standing myth that people with Autism have little emotion and that they are generally not very loving/cuddly/social. While this may be true in some aspects or for some people with Autism, it’s not the steadfast rule. In fact, I have found that many kiddos with Autism are very, very loving and desire physical interaction. Just as an example, the first time I met our 8 year old twin neighbor boys (who both have Autism), was when one of them came up to me and gave me a big hug, kiss on the cheek and said, “I love you.” This is where the confusion comes in for a lot of the general public. Kids such as the neighbor boys and my boys both enjoy this type of interaction, but don’t understand why it’s not acceptable.

So….with that said……let me tell you a little about Nick and his social inappropriateness. He REALLY enjoys giving everyone (even random strangers) big hugs. It’s not unusual for him to run and hug 5 or more total strangers in one trip to Target. For this reason, I have tried to keep him contained to the shopping cart, but as he gets older, he wants to walk…..and he is 5 years old, so he should be walking. The only problem is as soon as he sees his target; he makes a break for it…….and I usually can’t catch up with him in time to stop the hugging. So…..I routinely apologize to bewildered strangers that are darn near knocked over by a strange kid hugging them. Until last night, they have always told me that it’s o.k. or not to worry about it, or even that the hug “made their day.” Usually I hear, “awwww……that’s so sweet!” Once an older lady commented, “Yup, I still got it!!” LOL I’m glad people are so understanding, but they don’t see what I see. Right now, Nick is a cute, little, mostly harmless, 5 year old boy. What happens when he is a much larger 12 or 13 year old boy and he still runs around hugging everyone? Nick isn’t obviously special needs as far as his features are concerned, so I’m relatively certain that he’ll be regarded as a weirdo, creeper, pervert if this continues. Who knows? He might even take a butt kicking if he hugs the wrong person’s girlfriend or wife.

So…..after talking with Nick’s teacher at parent/teacher conferences, I have realized this is a problem at school as well. Nick routinely runs and gives fully body/tackle hugs to classmates. Apparently he also does a lot of unsolicited kissing at school as well! His teacher told me that she is trying to deter the kissing especially by telling him that it’s not o.k. to kiss people and by asking him to wave and say “hi” instead. So, now he waves, says “hi,” sneaks in a quick kiss and runs! He has been spending a fair amount of time in timeout at school for this behavior. While that might seem harsh, I completely understand the reasoning. So now, when it looks like Nick is going to run and hug someone, I try to stop him and tell him, “why don’t you just wave and say hi.” Or…..if he completes the hug, I just tell him “remember, everyone doesn’t like hugs, can you just say hi?” Usually the person he’s hugged gets mad that I’ve corrected him for something so “harmless”……sigh.

Anyway….last night we finally experienced someone who obviously did NOT appreciate the hugs. We went to McDonald’s so Nick and Max could play with their “cousin” Blake. Nick probably hugged at least 3 adults within 10 minutes of being in the play area. One was a grandmother and he LEAPT into her arms. Luckily she was a good sport and strong enough that she was willing to hold and cuddle him for a minute. (much to my embarrassment) At one point, I was engrossed in conversation with my BFF when I saw Nick out of the corner of my eye. He was trying to hug another woman, who looked frantic and was pushing him away. She looked REALLY pissed off and I scrambled to get over there and pull Nick away from her. He finally gave up and went back to playing on the equipment…..she ignored me and looked just disgusted…..what a witch!! Now, Nick is not a child who gives up easily…..so it wasn’t long before he went over and attempted another hug, much to this mother’s disdain. Anyway, I went over there again and grabbed him and we left shortly after. While I do think this other parent could have been a little more kind, I have a feeling this is a preview of what’s to come if we don’t nip this in the bud now :(

The Hardest Part

I've been thinking a lot lately about the hardest part of having special needs children. There were many times over the past 5 years where I thought for sure that it could not get worse.....that my heart would break.....that THIS must be the toughest part of having a child with Autism. Over the last year or so, I've started to experience a whole new level of heartache. The toughest part of Autism, at least right now, is watching my children try (and fail) to interact with peers. It kills me when I see how they are treated by other kids (and adults) at times.

What are you supposed to do when another child makes fun of or takes advantage of your special needs child? How much more does it hurt when you realize that your child has NO IDEA that they are being taken advantage of or teased? Honestly.....you are grateful in one sense that your child experiences a certain amount of obliviousness......but your heart grows hard and your disdain for others becomes strong. It's not that I really blame other children for not wanting to play with my kids. It's understandable.....they are wild....they don't talk to other kids or play games with them or understand what another kid wants to do. I mean.....as a child, you can only chase Nick around for so long before you probably feel like he really doesn't want to play with you. Nick might run up and hit you and run away really fast. Your own 5 year old feelings will be hurt.....but you don't understand that Nick thinks he is playing tag. He might come and smack the top of your head really hard......you don't know that Nick wants to play "duck, duck goose." All you know is that darn Nick won't talk to you, or play any games you want to play and.....he's kinda rough.

What am I to say to these kids when they come to me, crying and tell me, "Nick doesn't want to play with me, he won't talk?" I usually just say that Nick has a hard time talking, which usually leads to many, many more "why" questions. How do you explain Autism to another preschooler? How do you stop other kids from ganging up on your kid, when he's such an easy and oblivious target? Will my boys ever have true friends?? Will they grow up with someone to confide in, mature with, who will love them just as they are? I honestly don't know.

In many ways, I am terrified for Nick to start Kindergarten next year....especially in a typical classroom setting. He's been cocooned in his own little world for the last several years in his special needs Preschool class. What will it be like for him to be so outnumbered by typical developing peers? I got a little teary eyed after Nick's last parent/teacher conference. We agreed on a good plan for him in Kindergarten....spending part of his time in a special needs class and part in a typical class with the support of a para. His teacher told me that the para would become kind of a "classroom para" and help all the kids. That way, Nick wouldn't become "THAT kid with the para." Really? Already? It made me cry to think that he couldn't even make it to Kindergarten without being different. All I can hope is that we will get Nick into an awesome school and keep him in the same school where he will grow up with the same general group of kids. That way, hopefully, he won't stand out so much......they'll just remember Nick as always being the way he is. God.....I know I sound like such a babbling idiot....like I feel soooooo sorry for myself.....like other parents don't have it worse. I really am grateful for what abilities my boys DO have, that it's not worse.....but I think it's important for other people to understand what parents like me are going through.

I'm kinda betting that most people don't have to think about this stuff so in depth when their kids are growing up. Sure....other kids have some problems with bullies, or cliques, or not getting invited to certain birthday parties. Think of how it feels for a parent who knows their child will never be invited to a birthday party, or be part of a group of friends or how it feels to wonder if your child is being picked on, but knowing that they won't be able to tell you if they are? My heart hurts for my boys just thinking about this right now. I'm glad that we do have several friends who don't allow their child to treat mine badly, who invite them to parties and are understanding when my 5 year old knocks down their baby or has a 1 year old style tantrum. But I have to wonder....how long will that last?

Take Me Home

It’s no secret that a lot of parents of kiddos with Autism feel helpless, scared and angry pretty often. Many of them live in fear that their child will wander away and become lost, hurt or even die. It’s certainly a very real fear and unfortunately I think most kids with Autism wander away at some point. I know we have lost Nick in more stores than I can count and once at a large amusement park. Many kids with Autism are attracted to water and immediately head for a pool, pond or any other body of water once they wander away. Many ASD (Autism Spectrum Disorder) kids also have little or no understanding about safety and will get right into a pond or pool even if they are unable to swim. These are both true for Nick…..no understanding of safety and LOVES water! In fact, the day he wandered away at the amusement park, he was attracted to the small water park area and went back into it to play longer. The day of the “escape” from our house, Nick had been begging to go play out in the rain. Even if you don’t live near a body of water, the fear of wandering is very real. Many kids with ASD do not fear strangers, are not afraid to be separated from parents, will not respond to their names and will even hide from people searching for them.

Some of you may or may not be aware that I work in Law Enforcement and that I have been assigned to the Dispatch division for the last 6 years. I started to notice officers seemed to be encountering a lot of kids (and adults) who had wandered off and were non-verbal. This often happened in the middle of the night or very early morning hours when their caregivers were still asleep. It took lots of time for officers to reunite the kids or adults with their family members, because they had to knock on every door in the area and search for a caregiver. More often than not, the lost person would be brought to the police station to sit and wait for someone to realize they were missing. It scared me to think that this is probably exactly what would happen to Nick if he ever managed another escape. He can answer some questions, but cannot elaborate on them and certainly does not know his address. For instance, “What is your name?” will get the short and simple answer, “Nick.” We are trying to teach him his last name, but he hasn’t been able to remember it so far. The question, “How old are you?” will get the simplest answer also, “five.” Who knows what he would say if he were asked, “Where do you live?” or “Where’s your mommy or daddy?” My best guess is that he would respond with a silly answer that has nothing to do with the question. He knows he should respond to a question, but isn’t able to really process and answer that question very well.

So…..knowing that this was a real problem, I went to my supervisor at work and asked what he thought about some sort of Law Enforcement database for non-verbal people? I was given the green light to figure out who would qualify, how it would be implemented etc and was told that it could then be presented to our division supervisor. I worked hard for weeks, searching the internet for similar programs, making a power point presentation, typing up forms and scouring dispatch calls where non-verbal people were encountered. I discovered an excellent program called, “Take Me Home” that was developed about 8 years ago by a Pensacola, FL police officer. The program is now being used in states all over the U.S. I contacted the officer who designed the program. He was so kind and shared all of his information, the software and gave me permission to use his program in Johnson County. Finally, when I had the presentation ready, I showed it to my division supervisor. She loved it and asked me to present it to the entire Command Staff! I was SO nervous, but I knew I had to do this if I really wanted it to work. So…..two weeks later, I presented the program to the Sheriff, Undersheriff, Majors and Captains for my entire agency……and held my breath. Immediately after I finished, the Sheriff said that he fully supported the project and that we should work to implement it! Thank you baby Jesus!! LOL
For the next couple of months, we worked on designing our own software and figured out how this program would actually be implemented. On February 10th, I held the first open registration for Johnson County’s Take Me Home program! I was soooooo excited and happy and scared at that first registration. What if we were overwhelmed with applicants? What if nobody showed up? My fears turned out to be unnecessary. We had a total of 33 applicants that first evening. It was so awesome to meet the many kids and adults being registered and to speak with their families. Many of them told me how frightened they were about the potential for wandering. They were grateful for a program that could help a loved one get home fast if they did wander and could not tell an officer their contact information. I met adults with Alzheimer’s, kids and adults with Autism, Down Syndrome and many, many other genetic or cognitive disabilities.

At the end of the night, exhausted and ready to go home and see my kids, my husband (who was also working at registration) said something that really stuck in my mind. He said, “Wow…..we are really lucky….we could have it so much worse…..I’m so grateful for our boys.” And you know what?? He’s right….we do have it good. Many of the people we registered could not speak at all, could not walk, express affection, had lots of medical issues, had such severe stimming that they hurt themselves and their caregivers etc. I might feel sorry for myself sometimes, but I also remember how lucky I am and now I have seen just how bad it could be.

As of right now, we have received over 100 registrations for the Take Me Home program and we continue to receive more almost every day! I talk to many parents who tell me how grateful they are for the program and that it makes them feel more at ease. When I tell them I have two kids on the ASD spectrum, it’s like they are talking to a kindred spirit…..someone who knows where they have been and what they are going through. I feel like I’m making a difference and using my experience to help others…..and that’s good for the soul!