Never, Ever, Ever Give Up!

My kids are so amazing sometimes.....lately they have been leaving me more than a little speechless with some of their progress. We have been working really hard with Max on requesting. For awhile, we let him get by using only one word to request drink or "dink" and taking "help" for most other requests. I started to make him say, "I want ______" and it was pretty slow goings at first. Now though, he is starting to understand that he must use those 3 little words to get what he wants. For instance, yesterday he grabbed my arm, pulled me in the direction of his cup and said, "dink." I picked up the cup and said, "What do you want?" I could see the little wheels turning in his head and then the light bulb moment...."I.......want..........dink!" It's not always easy to understand, and a lot of times I have to parrot the words for him to repeat, but I am so proud of this progress!!! I know he's trying so hard to say new things, but sometimes those darn words just won't come out no matter how hard he tries!

Another rather inventive thing he's been doing lately involves the use of his I-Pad. The first time he did this was a couple weeks ago....we were sitting in a chair watching t.v. together and he started saying "cookie." I ignored him because it was close to dinner and he was NOT getting a cookie. He kept repeated "cookie, cookie, cookie" and pointing in the direction of the kitchen. I pointedly ignored him and he ran off to get his I-Pad. He pulled up the pictures we had loaded onto it and located a picture of himself eating a cookie. He looked at me, pointed at the picture and said "cookie!" I sat there in silence.....shocked. Apparently he thought I was still missing the point, so he scanned through the pictures, pulled up one of Nick eating a cookie, looked at me and insisted, "Cookie!" Well, how could I really ignore that? Yes, I gave the kid a cookie before dinner :) Just yesterday, he used the I-Pad in the same way. He tried to say something to me, but it was unintelligible and he realized I did not understand. He got the I-Pad, pulled up the pictures again and found one of him on a swing at the park. He pointed at the picture and said, "That" and then walked to the back door and stood there. I didn't move fast enough for him, so he walked back over, pulled up another picture of Nick on a slide and said, "that" then went to stand again at the backdoor while pointing outside. He REALLY wanted to play on the swing set in the backyard! I am so unbelievably proud of this new development!! I think we will be adding a lot more pictures to the I-Pad so he can make more specific requests!

Nick has also been doing some amazing communicating lately. He's doing such a good job using multiple words to request items. Our interactions usually go something like this......Nick will open the refrigerator door, pull out a package of pepperoni and either come hand it to me or say, "pepperoni." I will either ignore him or say, "I don't understand what you want?" He lets out a big sigh, looks me directly in the eyes and says, "Miss Mama I want pepperoni!" It's a little obvious that he has been going to school, huh? He has been putting a "Miss" in front of everyone's name lately (including Daddy and Papa) :) I know that Nick wants to stay in his own little world of Autism, but I'm determined to burst that bubble and pull him into our world. Some people might think it's mean to force the eye contact and multiple words, but it's just what we have to do. Someday I hope it will come naturally for him and his Autism won't be so obvious.

Nick and I had a mini conversation last night that just about left me with happy tears. He went to Ocean's of Fun ALL day yesterday with Grandpa, Grandma, Aunt Briley, Daddy and Max. I had to work, but we sat down to have dinner together after I picked him up from Grandma and Grandpa's house. I asked him, "Nick, what did you do today?" He looked me in the eyes and said, "swimming, pool, life jacket, slide!" I said, "Oh my, did you go swimming? Did Grandpa go with you?" He said, "Papa and Briley." I reminded him that Grandma, Daddy and Max were also at the pool and then asked, "What was your favorite part?" He told me, "swimming slides!" I started to tear up just a little and couldn't say much else than, "good for you, Nick, good for you." What can I say? This is probably the closest thing to a real give and take conversation that Nick and I have ever had! He might not have explained things to me in full sentences, but he sure got his point across. I know the important things....he went swimming with Grandpa and Aunt Briley, wore a life jacket and enjoyed the water slides the best.

Autism might be a really tough thing to deal with as a parent, but it's also really beautiful. These type of interactions happen all day long for parents of typical developing 3 and 5 year olds and those parents think nothing of it. On the other hand, each word, conversation, request, eye contact and every tiny interaction I have with my children makes my heart soar and reminds me to never, ever, ever give up on them.

"Tard Whispering"

As I lie here, typing this blog, I listen to Max and Daddy reading a book in the next room. A smile creeps over my face as I listen to Max labeling things in the book and demonstrating the various noises each animal makes. I am SO unbelievably proud that he is able to do these things and so much more. On the other hand, a dark cloud of sadness, anger, and many other emotions works it way into my mind. You see.....something happened at work last week that I just haven't been able to let go. I like to believe that people in my profession like to help other people....that they understand differences...that they are as excited about new knowledge as I am. But....I guess I'm wrong sometimes.....I guess now I know that they laugh and make nasty comments behind my back and even to my face.

Where do I start? I guess I should say that I am teaching a class about Autism for Law Enforcement Officers. The class is meant to help LEO's identify people with special needs and to help them better interact with people who have Autism or other developmental disabilities. It's an important class.....research shows that these types of people are 7 times more likely to come into contact with Law Enforcement!!! Unfortunately, these are not always positive contacts on either side. I thought, who better to educate officers about people with Autism than ME???? After all, I have been in Law Enforcement for 9 years now and have two children with Autism and have educated myself exstinsively. No brainer, right?

So, I have the first class scheduled for June 24th and it is filling up fast. I know there will be many more classes scheduled to involve Law Enforcement other than just the agency I work for. So, I had a recent opportunity to promote this class to another Law Enforcement agency while we were working together. I proceeded to tell no less than 5-10 officers about the benefits of my class and why they should attend the training. I was very passionate and yes, maybe a little over the top, but darnit I'm excited!!! So, the first several officers I speak with tell me they would enjoy the class and to let them know when it is scheduled so they can attend. Another couple agree to attend, mostly because it counts towards training hours :) The next few that I speak with happen to be some higher ranking decision makers.....the types of people that will either allow or not allow these other officers to attend the training. As I am in the middle of explaining the class and why it is so important that they attend, these officers start using words like "retard" and asking if this is a "tard whispering" class and if there will be any actual "Autistic" people in the class? Stunned......I stop speaking and listen as they go on and on about all the "retards" that live in their city and laugh and make fun of them. I cannot speak.....I am in shock.....I think I may cry if I open my mouth. So, I mention to one of them that he will be the only "Autistic" person in the class if he shows up for it as he obviously has no social skills. He tells me that even if he is ordered to attend my class by the Chief of Police, he will make them write him up instead. I walk out of the room thinking that I have never been so ashamed of or dissillusioned with my profession as I am right at this moment.

It took me over a week to write this, because honestly, I am still bubbling over with anger at these stupid, ignorant men. Is this the way my children are talked about behind their back by people who are sworn to serve and protect them? Are my children only "retards" to the rest of the general public?? Have I been lying to myself that I am helping people to understand? First of all, both of my children are highly intelligent, but they have trouble with social and communication skills. This does not make them Mentally Retarded.......and even if they did have a lower IQ that qualified them as Mentally Retarded, it does not qualify them as less of a human being. I hate these men for the doubt they have put in my brain ever since that day. I did manage to call one of their supervisors though and suggest that they may get some benefit out of attending my class ;) Knowledge is power and maybe I can get through to these ignorant asses!

A good friend of mine who also works in Law Enforcment had the opportunity to see these same men no less than a week after I had this experience with them. Apparently whatever she said to them had quite an impact as I have received one or two apologies for their lack of social graces. Unfortunately, the apologies I received where from officers who were not involved in the whole "tard whispering" conversation. All the same, it's good to know that I have friends who won't let people talk like that about me or my children and who will stick up for me when I am too shocked to do it for myself. You know who you are......love ya!

I'm no Saint :)

Here's something my own mother shared with me on Mother's Day this year. Made me cry.....thought I'd share.....

The Special Mother by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect -she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a "spoken word". She will consider a "step" ordinary. When her child says "Momma" for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

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!

Don't Say You're Sorry

It is with a heavy heart and a conflicted mind that I am writing this current blog post. We took Max to have an evaluation with a Developmental Pediatrician today. This is the same appointment that I've been putting off or telling Allen to schedule. (knowing darn well that he'll never schedule it) I felt that the Pediatrician wouldn't be able to give us any kind of a diagnosis. I figured, we'd leave the office just as confused as when we'd walked in. I thought the doctor would tell us that Max has a speech delay, but that he wasn't really sure what all was going on. Honestly.....that is what I completely expected him to say.

Instead, after and hour and a half of talking with us and playing and doing some testing with Max, this is what he said. Max functions speech-wise at the level of a 14 month old. His imitative/play/social skills are a the level of a 21 month old child. Max's real age is 31 months. The doctor told us that Max is absolutely on the Autism spectrum and gave him such diagnosis. I felt like someone had punched me in the gut....really?? Max?? He is "certainly on the spectrum?" My social, loveable, cuddable, eye contact making little guy? As we all know though....there is a spectrum....a broad range of severity where people can be diagnosed. Admittedly, the doctor said that Max is on the mild end of the spectrum. He is considered more mild than Nick was because Nick had temper tantrums and lots of trouble transitioning. So....although he is a tad less severe than Nick, basically, they are pretty close to each other as far as where they fall on the spectrum.

The doctor suggested that we get Max into some daycare for a day or two a week and hire a Speech Therapist to come work with Max at home. I have no idea where we will find this and how in the world we will afford it? I just have to say that Max is actually receiving services from Infant and Toddler Services, but they SUCK!! They are not doing therapy with Max at all....instead they come and talk to the parents about strategies to use at home. Well, this isn't our first rodeo and that is NOT what we need......we need someone to do actual therapy....sigh.

I have spent the entire day on the verge of crying. Is this somehow my fault? Did I do something wrong? Is it genetic? I feel overwhelmed......my husband started to cry in the car on the way home from Max's appointment. I found myself being the strong one. I told him that Autism is just a word.....just a diagnosis......it doesn't change anything. We have been dealing with two children with Autism for 2 1/2 years now....and just because someone finally labeled our kid, that doesn't mean that anything is going to change or get harder. I told him that God must know that we can handle these two beautiful little boys. I told him that things happen for a reason. But really, I am wondering if we will ever catch a break? Will it ever get easier? Is there a God? If so, what is his reasoning....how far are we to be tested? Can I really handle two special needs children???

I'm trying to be positive....really, I am. I am so grateful that they are not so severe that they will never speak or potty train or tell jokes. I KNOW that it could be so much worse. I could have a child who is fighting for their life and batting cancer or some other disease. There are so much more worse things than Autism....even two kids with Autism. But dammit....why did it have to happen to us?? I'm scared....what if my marriage doesn't survive this? What if I can't do this? But...I know I will survive this....because I always do. And I know that I can do it.....because I was raised to know that I can do anything! I could never, never give up on my boys. Nick speaks in sentences now.....and hopefully I can see Max's future in the things Nick can accomplish. So....please don't tell me you're sorry to hear this news. Give me a hug and let me be just a little sad....but know that I wouldn't change my life for anything and that I love my boys just the way they are. I'm not sorry....I'm sad, scared, grateful, nervous, worried, relieved.....but I will never be sorry.