Autism and Jolly Ol’ St. Nick

Our girl is so excited about Santa. She wakes VERY early in the morning to see where Sonic our elf will be hiding next. Little man…he could care less. The Pre-K class in school has been asked to do a Christmas list telling Santa what they would like for Christmas. The Teachers, and I have tried to pry something…anything out of him. Just one or two things. I even gave him examples like…”Do you want Santa to bring you a bike?” Finally… he spoke his piece. “U no understand, Mama.” Which is actually his way of telling ME that HE doesn’t understand.

At first… I must admit…I was kind of sad. I thought… Will we never see the excitement from him that we see from our girl? Will he ever excitedly open a present? Will he ever look out the window…see a plane blinking red and think it is Rudolph’s nose? Will he ever not be able to sleep on Christmas Eve because he is so excited to see what awesomeness Santa is going to leave under our Christmas tree? Maybe…Maybe not.

I have actually been thinking about this a lot. I am sure I could write my own social story to try to teach him what Santa is all about. I could constantly push a story on him about this Jolly Ol’ Elf that rides in a sleigh pulled by 8 tiny reindeer, that visits every single home in the world and somehow slides down our chimney on Christmas eve with a giant sack of toys and puts them under our tree without waking anyone in the house. I am sure eventually he might understand the concept. He might believe in Santa. He might be so excited. He might not. People with autism are often very logical. Even if he did understand… would he believe?

For now I am going to enjoy the excitement that our girl has about Santa and Christmas. I am thankful that she is so excited even if she does wake us up at 2:30 AM to tell us that she searched the house and finally found our shelf elf’s new hiding spot. I am going to enjoy her excitedly opening her presents. Not being able to sleep on Christmas Eve. I am going to hope that she will believe for a few more years.

Little man does enjoy the season. There is no doubt about that. When we put the tree up…he was a sick little boy. He saw the tree and got up off the couch saying “Woods. That’s the woods, Mama!” (He loves anything to do with trees, plants, and the woods) He loves the lights. He also has a new love for Rudolph. He loves the snow. Getting in the car this morning he said in a sad little voice “Where snow? Where snow go?”  He is excited about the season, the lights, and many other things that go along with the Christmas season. We will take that and run with it.

I am going to thank God for giving little man the words that he needed to let me know that he just didn’t understand. A few years ago he couldn’t even tell us he needed a drink. Now he told me that he just didn’t understand. That is HUGE. HUGE. HUGE. I am not going to push Santa on him. It is surely not a priority to a little boy with autism that is still learning to communicate with words. In my eyes…there are much bigger and better things that we could be pushing him to believe in…such as…God, love, family, and himself. I am not going to be sad about him not understanding Santa. I am going to be thankful that he is learning to communicate with words. That is the best  Christmas gift a Mom and Dad could have ever been given.

 

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Autism and Honesty….The Bitter Truth

There is a known link between Autism and honesty. The reasons why people who have Autism are so honest is unclear. I often wonder if it is just the fact that they haven’t learned to lie. Is it a learned behavior that we have all learned by watching television, reading stories, etc.? Who hasn’t read a children’s book that hasn’t had a life lesson about a child telling a lie or a fib? If we just didn’t talk about telling lies and fibs and start trying to teach them NOT to lie at such a young age would they grow up just not understanding why people lie and not lie themselves? Would that create a whole other set of problems? Not understanding people that DO lie and causing them pain because of being so naive? Thinking that they don’t lie so why would anyone else lie? Something to ponder for sure. In children with Autism who are already struggling with some types of developmental delays…Maybe it is just that simple….They have not learned to lie.

It has always been a moral that we have tried to teach our children. Tell us the truth. If you did commit to an act that is against the rules…Admit it! If you lie and I find out later that you did commit the act, and you lied. The punishment will be more severe. It seems by watching about court and trials on TV that rule carries on into adulthood. Tell the truth and the prison sentence will be less.

I agree that honesty is best. Most of the time. I have often said to myself or others how much I appreciate the honesty of my little girl (who soon turns 8 years old). Then there have been those times that I have tried to teach her to use a “filter”. I have even explained to her that using a “filter” does not mean that you are lying. It simply means that you may be having many thoughts. Good or bad. That doesn’t mean you have to verbally express all of the thoughts you have.

I used to be mortified by the things that she would say to people. I have learned to just laugh it off. I am not sure it is something that she can help. I have also learned that as rude as some “typical” people can be…Why should I feel embarrassed about my 7 year old daughter who has Autism? Why should I feel embarrassed about her honesty?

Some examples of her honesty are as follows… Our daughter likes to tell our life story. “This is my little brother. He is mean. He likes to hit, bite, kick, etc. We are going to Wal-Mart. We are going to Mc Donalds after. We live in Princeton. We have two dogs.” She could go on and on. One moment that really sticks in my head was a recent trip to our local hospital. The Dr was seeing her. The Dr stated that she was doing very well and being very good. She replied “I am being so good because you aren’t doing anything that I don’t like. I will keep being good as long as you don’t do anything that I don’t like!” Times that certain family members come to visit. “Did you bring me anything? Did you? Did you?” When upset with someone. “I don’t love you anymore. I am never coming here again. You are not my auntie, cousin, mom, friend anymore.” Another example would be when people have asked her “How are you?” She replies…”I am mad at my Mom today! She is mean!” After one of these statements are made and you ask her to apologize. She can’t. She has stated in certain circumstances before. “I can’t say I am sorry, because I am not sorry!”

Sometimes I wonder what the world would be like if we were all a little more honest. More honest with ourselves and with others. Would it make the world a better place if we just put it all on the table and didn’t ever use a filter? Never was dishonest? Was truthful at all times no matter what? Or would we be living in a world of negativity? I keep thinking of myself. If I was always honest. The simple question of how are you today? In my mind… “Oh my! Do you really want to know? I just spent two hours cleaning crap off the walls, carpets, and bed. I have been filling out and trying to sort out mounds of paperwork that never seems to end. I have been trying to keep my Son from beating the dogs, my daughter, and me.  I really just want to crawl into bed and sleep the day away.” What I say…”I am good. How are you?” (With a smile.) Then there are the days that I honestly can say “I am good. How are you? (With a smile.)

It is a catch 22. How can I be upset with our beautiful Daughter for speaking the truth and wishing our Son could tell us more? I can’t… not really. For now…I will just continue to laugh and admire her ability to be brutally honest. I will be glad that I have learned to laugh it off and not let it embarrass me. I will continue to hope for more and more words from our Son.(Even if the truth hurts.) I will continue to learn from BOTH of my children each day. It is amazing how much having two special needs children with Autism have changed my ways of thinking. It is amazing how much they have taught me. I am a better person…because of them.

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What if there was a cure for Autism?

Every parent that has a child with Autism seems to have a different opinion on what they would do if there was ever a cure found for Autism. First off… There are no known cures for Autism. Second…I don’t think there EVER will be a cure.(Not in my lifetime anyway.) Third… We would have to know what the causes are before we could ever find a cure. Fourth… If a cure was found would I want to CURE my children?

GOOD QUESTION! My thoughts on this change monthly, weekly, daily, and sometimes by the minute. Just being honest…

I have to start by saying that all of us as parents must have a touch of wanting to “cure” or “reform” our Autistic children. If we didn’t why would we bother with all of the OT, speech, ABA, and many of the other therapies that are out there for Autistic children. If we didn’t want our children to change then why all the behavior changing therapies? We are ultimately talking with instructors or teachers and trying to hand pick certain behaviors that may come with a diagnosis of Autism and work them out of our children. We want them to be able to function in a world that some people are not going to understand them most of their lives, but are we changing part of who they are and not just part of their Autism?

I try to imagine myself being an individual with Autism. Everywhere you go people are watching you. Taking notes. Following you around. Everything you do someone is constantly trying to redirect you. Sometimes you go to places or are at meetings where people are discussing you as if you are not even there. You know what you want…you just don’t know how to say it. The lights are all bright, the sounds are all loud. People talk to you, but you just don’t understand. Clothing is uncomfortable. You try to just be you….but you can’t. No one will let you.. just be you…

I can imagine why these children or people have “meltdowns.” I can only imagine how the daily life in a child or person living with Autism could be so difficult.

Sometimes I try to imagine my children without Autism. When my boy was only speaking about 3 words I actually had a dream that he was talking to me. I mean talking and not stopping. We were outside talking and he was saying so many funny things. I was laughing and crying at the same time in this dream. He was not trying to go into the woods. He was not  running. He was just standing there talking to me. I woke up and realized it was a dream. I revisit the memory of this dream often. The little boy in that dream… He looked like my boy, he had my boys voice, but that was not my boy…

Where I am going with this is here. If there EVER is a cure I wonder what it would consist of. Would it be a vaccine type shot? Would it be a pill form that a child could take and it would rid their bodies of Autism? After given this known “cure” what would we be left with? Would curing my children’s Autism take away the quirky little things that I love so much about them? Would my girl not have such a free spirit? Would she not be as loving? Would she not say the funny things she says? Would my boy not make those funny facial expressions that make us laugh? Would he not reach for my hand when he is getting ready to go to sleep? WHAT WOULD THEY WANT? That would be the biggest question…

On the other hand… Would my girl not have meltdowns anymore? Would she be more independent? Not be so sensitive to smells? Would my boy be able to sleep in his own bed all night, every night? Would he be able handle transitions without melting down? Would he be able to tell us funny stories?

So many questions. I guess what I am wondering is if totally taking away their Autism would take away who they really are? Could I do it? I don’t know if I could ever make a final decision about this…If they were old enough to decide I would ultimately have to leave it up to them despite my feelings on the matter.

I still can get teary eyed thinking about that little boy in my dream that was not really my child. I think that part of the reason I cried in that dream was because even though I was laughing and listening to this little boy talking and talking to me. I missed MY boy. My precious little man.

I wonder if they were old enough to know everything about their diagnosis…would they want to be Autism free? Someday I will be able to ask them… Maybe. I will not be holding my breath for a cure anytime soon. I am sure I will be long gone when and if there is EVER a cure for Autism.

It seems like it should be black and white. A simple thing. It is not. How do we know for sure what behavior is part of the Autism? What is just part of our kids personalities? We don’t know for sure and most likely never will.

Just another thought running through the mind of an Autism Mom…

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The top 10 things I have learned about parenting my autistic children…

This is not parenting advice. This is just examples of things that have worked for our family. I am no expert. I have just been thinking of how far we have come as a family and all the things we have learned over the years. 🙂

1. Pick your battles- This is probably one of the most important things I have learned. Letting my kids do things that they want to in order to avoid a meltdown. This does not mean we let them do whatever they want whenever they want. This just means we are very selective about the things that we allow or don’t allow.

2. Positive reinforcement (aka bribery) works wonders- Our kids love praise. They love to be clapped for, given a small treat, or do an activity of their choice for good behavior.

Example: If you are good in Wal-mart you can get a small toy or something out of the machines before we leave.

This turns into a routine. This encourages good behavior for every visit to the store. If they are good in the stores it is so worth that extra dollar or two.

3. Set the bar high.- I have seen both of our kids try and try and try to do many different things that may seem impossible. I have always tried to tell them… “I know you can do it!” No matter what it is.This seems to give them that extra boost of confidence that they need to keep trying. Then one day it turns into one of those WOW moments when they finally do it. I try not to say “He/she can’t do that.” I try to say “He/she is not doing that yet.”

4. You do not have to do everything THEY say you should. – They meaning the Dr, therapist, special educator, etc. No one knows your child like you do. No child with Autism is the same. There is no manual for raising any child including children with Autism. Use your own judgement. Try different things. Find out what works for you and your family and do just that. It is all up to you.

5. Spread Autism awareness- There are many benefits to making people more aware. With awareness comes understanding. With understanding comes less judgement. It is hard to understand something that doesn’t affect you. I always try to encourage questions by spreading awareness. It can be as simple as wearing a puzzle piece necklace. People will ask… “What does the puzzle piece mean?”

6. Watch them sleeping.- Even if it is just for a minute. I have learned that after a bad day it makes me feel so much better to kiss their foreheads and just watch them sleep for a minute. It is a great reminder that there is always a calm after the storm. Even though the it may have been rough today… the hard times will pass and things will get better.

7. It is OK to say it’s hard- Raising children is not easy. Raising Autistic children is not easy. We may have different struggles, but we all have them. It is OK to say that it is not easy. Get it out. Don’t be afraid to talk about your struggles. It will help spread awareness, it will make you feel better.

8. Take some of the credit.- I am GUILTY on this one. I never give myself any credit for the way I am raising my kids. I never feel like I have tried hard enough, tried enough options, done things the way I should have, done enough research… Sometimes I think that it is just my way of making myself try even harder. You have to take some of the credit. You are the one that spends the most time with your children. Not the Dr, the therapist, the teachers, the family. You are the one that is the most passionate about raising your children and giving them the tools they need to survive comfortably in such a fast paced world.Give yourself some of the credit for that. As long as you are doing your best with what you have. That is the most you can do.

9. Play.- Put everything aside and just play. Put the paperwork away. Get off the phone. Get off the computer. DVR your favorite show for after the kids are sleeping. Make certain times for nothing else but to play. Discover. Learn together. Teach in a fun way. Imagine. It is the best therapy for you and your kids. These will be the memories they will never forget.

10. You don’t need to hear “I love you.” to feel love- I have learned that saying “I love you.” is not that important. Feeling loved is totally different. People say “I love you” all the time. Sure it is nice to hear. It is even better to feel it. It can be that time that your child with a small vocabulary comes up to you and kisses your cheek for no reason. It can be them wanting to hold your hand while getting ready to go to sleep. It can be cuddling together. It can be a look and smile from your child when you know…you just know…that they LOVE you. You feel it in your heart. I used to think it was sad that my son could not say “I love you” to me. Love isn’t words that you should throw around. It is a feeling. We should all show or feel it without having to say it. Sometimes we all say it best when we say nothing at all.

 

 

 

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It’s all about the not so small things… :-)

This blog post is about all the NOT SO SMALL things that our children have accomplished that we sometimes wondered if they ever would (just being honest).

Over the years we have watched with envy as a ‘typical’ child walks up to their Mom or Dad and says “Can I have a drink of juice?” While our child cries and whines while we play a guessing game to figure out what they might need. We have watched ‘typical’ children play with a puzzle appropriately while verbally naming all the shapes and colors that are included in the puzzle. We have watched other parents at Birthdays or other social gatherings stand and socialize with the other parents while one of us is chasing our child who is unaware of danger and will go into the woods, out into the road, or just take off at any given moment. There are many more things that I could add to this list. When one of these things do seem to get better it makes an accomplishment that may seem so small to the parents of ‘typical’ children, a HUGE deal to us.

I want to start with our little girl. It was a daily struggle getting our girl to get up and get ready for school. She would cry, scream, tell us she was sick, not eat breakfast, refuse teeth brushing, and do any possible thing she could do to avoid going to school. I would sometimes have to literally carry her to the car kicking and screaming to get her to school. Then I would sometimes get phone calls from school that she refused to follow the teachers directions, ran out into the parking lot at school refusing to return, spent time in the Principals office because she was disrespectful to the teacher or her peers, and many more things.

Things have changed one hundred percent! She follows what her and I call her schedule or chart. It is pretty simple. It is basically a schedule of her day at school that has the numbers 1 2 3 after every activity. The rules for 1 2 and 3 are… 1. Do your work. 2. Do what the teacher says. 3. Use kind words. They check off every activity and she either gets a star or a circle for each number. The stars mean she followed the rules. The circles mean she did not follow the rules. This all gets figured into a percentage for the day. If she gets a good percentage at school she gets a prize time or prize at school. She also gets positive reinforcement at home as well. We will also reward her with a small prize at home for doing well at school. It may be as small as a piece of candy or a pack of stickers. She is doing so well in so many things. She is getting one hundred percents on her charts almost every day. She is doing well academically too! She is getting lots of good reports and notes from her teacher. She has even been named student of the week in her class twice this year! She is getting dressed all by herself, brushing her teeth, getting her boots on and we have been heading to school with pretty much no arguments! We may have a new struggle on our hands next year when she has a new teacher, new room, and other changes that come with a new school year. For now… we will take what we have…. and take it with PRIDE! We could not be more proud of her! We also are very fortunate to have a great group of teachers and staff at her school who have been a HUGE part of her success! Some of her successes may or may not seem small for a 7 year old girl. Either way…we are proud parents of a very special little girl.

Our little man has also come a long ways. He goes to day care 4 days a week for social interaction, special instruction and for many other reasons. He has also been having many successful days. When I go pick him up at 11:30 AM he is usually sitting at the table with a plate in front of him. He may or may not be eating but he is tolerating. He is interacting with other children, showing love to the babies, sitting for table top activities, and many more things. He is also showing so many improvements at home. He is appropriately playing with cars and trucks driving them around the house and on the table. He will bring us a sippy cup and say the words “You want juice?” He is giving kisses now (which makes me cry almost every time), he is verbally naming at least 9 colors, he will bring me a book and say “Can we read it?” He is doing so many new things! He works very well for verbal praise. He loves for you to clap for him. He loves you to cheer him on and use verbal praise for his good work. He is also starting to use a sticker reward type chart with his special instructor which seems to be working well with him. Material things (unless they are a monster truck or plow truck) don’t mean much to him. He does love to blow bubbles which is on his list of positive reinforcements.

We will take the successes with a smile. We could not be more proud of our boy! We also have many people to give credit to for his successes. The day care that he attends has been so helpful and great in so many ways. Child Development Services has done nothing but help us by setting appropriate goals for us to achieve as a team, even his favorite show “Peppa Pig” which he copies many phrases and sentences from. Some of these things may or may not seem so BIG for a 4 year old boy, but they are. They are HUGE…we are proud parents of a very special little boy.

We have had many different wishes and goals we have set for our children over the years. Some of these have been met. We may have a better chance of getting struck by lightening than knowing if some of these goals will EVER be met. I am not saying that we are the only parents that have dreams and goals for our children. I am just saying that our goals may seem small to the parents of ‘typical’ children. I am not saying that we are the only parents on the planet that have struggles with our kids and school among other things. I am just saying that these have been some of the struggles and successes we have faced. I am not saying that we are out of the woods and it will be smooth sailing from here on out. I am just saying that RIGHT NOW in this moment. I am one proud Mama. It makes me happy to see all these NOT SO SMALL changes happen! What more can I say? This is what has been on my mind for today 🙂

 

 

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Like it or not…

There are many reasons I decided to create this blog. One of the reasons was to help spread awareness about Autism. One reason was to help give people an inside view of what it is like for a family living with two children with Autism. Another reason is for my own benefit, to get some of my own feelings out. It is therapeutic for me. My intentions are not to offend anyone, make anyone feel like a ‘moron’, to ‘whine’ or anything like that.

When you post your feelings and opinions on Facebook you are opening yourself up to conflict with people who don’t think the same way you do. However, we all have the right to post as we please on our own Facebook wall. We all have our own opinions and the freedom to have our own opinions. We are all mature adults and most of us can agree to disagree without having World War II. Most of the posts I make on Facebook are related to Autism, my kids, or both.  My blog is where I express the most of my feelings and opinions.

I liked the idea of doing a blog. It is something I can write. I can write the truth. I can write my feelings. I can write my opinions. It is all mine. Doing a blog gives people the option to either read it…or not. If you don’t like what I write in my very own blog…I have some very simple advice for you. Don’t click the links I post. Don’t read it. Simple as that. This is my life. Like it or not. This is my blog. Like it or not. These are my feelings. Like it or not. I have enough drama right under my own roof. I am not going to allow people that don’t even know me try to make me feel bad about what I write. End of story.

~“You are not entitled to your opinion. You are entitled to your informed opinion. No one is entitled to be ignorant.” ~
Harlan Ellison

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The top ten awkward? things people have ever said to me…

People say some crazy things. Some people know you. They also know your children’s situation and still ask rude questions or say rude things. Some people know nothing about you or your kids and they say the rudest things. Some people are really trying to be nice and just don’t know what to say. Some people are just uneducated and say things they know nothing about. Here are some questions or statements that people have said to me and how I WISH I would have answered or replied. I am never good on the spot. I always think about what I should have said later on…

1. What is wrong with him/her?

This question really irritates me …He has AUTISM. I would love to know what is wrong … Believe me…I really, really wish he could tell me what is wrong.

2. Do you think that some cases of Autism are caused from lazy parenting?

Ummm? Really? Do you even have the slightest idea WHAT Autism is? Just a quick definition… Autism is a neurological BRAIN disorder! Google it! You might learn something!

3. My kid does that too. It is just a “kid” thing.

Oh my! Your “typical” child does the exact same thing my child does? Well…maybe it is time to get your child screened for Autism too! I am not saying that children with Autism are the only ones that have quirks, but I will say that what your child may do once or twice a day…a child with Autism may do one hundred times a day.

4. How is he/she doing in school/daycare?

Do you have all day/night? No? OK….well…He/she is doing great!

5. I think that Doctors are over diagnosing Autism.

I think that you are not educated enough to even have this discussion with me.

6. You guys must be like superman/superwoman!

Thanks! I know you are just trying to give me a compliment. Let me just tell you how I feel about that. Autism is not a choice. Parenting is. You would do the same things we do if you were walking in my shoes. We all do what we can for our children. We are doing the best we can. I feel far from being superwoman.

7. Does he/she like to color, do crafts, etc.?

Oh yes! He loves to sit and color for hours on end. The harness he wears is just for looks. Not to keep him from running off or anything like that.

8. He/she is not very talkative today.

I have taught him /her to never speak to strangers. *sigh*

9. Have you tried music, TV, or rubbing his back to help him/her sleep?

No. I don’t REALLY want him/her to sleep…..Obviously we have tried every possible scenario to help him sleep…NOTHING works!

10. I know how you feel.

No you don’t! You have no idea how I feel. I also have no idea how you feel. That is why I would never tell you I did. Until you have walked a day in my shoes (which will never happen) please don’t tell me you know how I feel. However, I have had parents in similar situations tell me that I never walk alone. That is a whole different statement…with a whole different meaning.

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