Keeping Christmas Alive

When my kids were younger, I was concerned if they understood the real meaning of Christmas. With public schools taking every notion of spirituality out and stores marketing the "perfect" gift, I needed to emphasize the birth of Christ. Autistic kids are so literal, so I wanted to ensure MY values are stressed, not the school's or retailer's.

I started with simple steps. My kids understood the traditional rituals of a birthday party; they understood a birthday party included items like gifts, cake, candles, and singing. So on Christmas afternoon, we celebrated the birth of Christ like all other birthdays. We baked a cake together. We all blew out the candles and sang "Happy Birthday" to Jesus. This also helped with the Christmas "blues" that sometimes came. (All the presents were opened, now what?) We always enjoyed the birthday party, and the focus was on Baby Jesus.

As the boys grew older, we evolved into celebrating the twelve days of Christmas. We gave gifts every day from December 25 to January 6. Again, this was to emphasize that Christmas was not just about getting gifts in abundance. The focus had to remain on the Christ-child. We always said a small prayer of thanks before opening the gifts. Our gifts usually centered on family events, giving of our time to each other.

"Gifts" varied from a video rental to dinner out. Miniature golfing or bowling were winners as well. Once in a while, we gave a can of soda or made a whole pizza for each boy. Of course, we had gifts of little toys are games in the mix. The boys learned patience and were able to appreciate gifts as they were received instead of the "what should I open next" syndrome.

Christmas is a joyful season. Instead of ending on December 25, it's only the beginning.

Reflections of Our Actions

We might never know the full impact of our actions or words. In this photo, the moon reflects the sun's lights. Like the moon, we reflect the positive or negative actions we receive.

My 13 year-old son, Nick, was asked who did he want to be like when he grew up. His reply was, "I want to be like my brother, Michael." I was shocked. So was Michael.

His big brother is now 25 and out of the house. Michael comes and takes his little brothers out to play ball or back to his house for a movie or video games. It's a little time that has a big pay-off. Nick asks every Thursday whether or not Michael is coming over. Every Thursday I tell Nick to call him. Michael can't come get Nick every Thursday. However, it has worked enough that Nick looks up to his brother as a role model.

When I told Michael that Nick wants to be like him, Michael had no idea that his time meant so much to Nick. It does.

We just never know when our actions will be priceless to someone else.

photo credit: thombo2

How To Balance Fun and Work...

...especially with boys at home for Christmas vacation.

I found that the boys just wanted to play all day. Nothing wrong with that except I got to do all the clean up. That lasted a day. I was not a slave, and they could not afford me as a maid!

I called the four boys into the kitchen for a chat. (They called it a lecture.) I asked how would they feel if one of them didn't get a chance to play. They agreed that would not be good. I asked how they would feel if one of them had to cook, dust, etc. all day. They agreed that would be not be fair.

I then pointed out that was exactly the situation, just the one not playing was MOM. I made sure that they had "down" time. They needed to reciprocate; Mom needed down time too. They needed to decide how that was going to happen.

Through an amazing conversation, an idea evolved. One suggested that I just get up and go, meaning leave to relax. Tempting. Another recommended I join in their fun. Intriguing. A third suggestion was to check with Mom to see if she needed help before they had fun. Thoughtful.

The result of the discussion is that they decided to establish a new rule: Mom must be having fun before they can have fun. I could not argue with that.

Over the course of the next few days, I was bombarded with, "MOM, ARE YOU HAVING FUN?" They yelled it from the stairs. They knocked on my bedroom door. They sought me out like never before.

They were willing to help me do chores, everything from laundry to cooking the next meal. The workload was shared. It was an awesome turnaround.

We now all have fun doing the work and playing. Tonight is Christmas Eve, and everything that needed to be prepared is done. Everyone helped, and we really had fun doing it together.

There has never been a better Christmas gift, except for the Christmas Babe Himself.

Autistic Children and Socialization = Mental Marathon

Socializing for autistic children is a mental marathon. Think about running a marathon. You would train for several months, doing different types of training, like weight training and endurance training. After each session, you're tired, or you should be if you have put forth 100% effort.

The same can be said for autistic kids and social situations. It demands so much effort and concentration that they can be mentally and physically tired. Think about what happens in a typical conversation between two people, such as eye contact, tone, gestures, and inflections. Then include the actual words being stated. Now think about what those two people have to tune out, such as outside noise and activities, distracting smells, and flickering or bright lights.

Neuro-typical or NT people do all this without thinking out it. Autistic children do not, and they have to be taught. It's one step at a time. Add to the above scenario the fact that autistic children then have to process what was actually said, think of the response, and then articulate that response. If your child is like mine, he thinks in pictures. So now we're talking about all of those steps above AND having to translate the words into pictures that he can understand. He then has to think of a response in pictures and translate those pictures into words.

Those brain cells are firing like crazy. Mental marathon.

Two years ago my Nick literally complained about his heart pumping so fast. He had talked to a peer for 10 minutes. He was exhausted, both physically and mentally. There is so much concentration and anxiety is social encounters, that it is bound to take a toll of some sort on these kids.

Onto Jacob and Meredith's question about Andrew and Ryan (their sons Andrew and Ryan), which pertained to Andrew only socializing during school and not having play dates, and his brother Ryan has play dates frequently. Should Mom push to arrange social activities? (To see the actual question, go see the first comment under Dec. 17, 2009 blog entry.) First, I would recommend to see your two sons as totally different individuals with different talents and skills. Their strengths and weaknesses will differ, no matter if they both have autism or not. Second, I would push Andrew's comfort zone, but slowly and in "baby steps". Only you will be able to gage what that exactly means as you (parents) alone are the experts on your child. Maybe schedule an outing on a Saturday for 15- 30 minutes at a park. Physical activity takes a lot of stress of a social situation because the kids can engage in the same activity, maybe even side-by-side, without having to feel forced to talk.

When it came to my children, I asked the teachers to recommend students who might be a good "guide" for my kids. The teacher usually volunteered to talk with the parents about my kids and trying to set a play date. I then arranged to meet in a neutral place for a very short time. I found a neutral place was important so my kids couldn't hide. The place also didn't have known "triggers" such as a dog, cat, or smoke.
Most importantly, no matter how a social encounter ends, always praise your child for trying.

photo credit:bradleypjohnson

Autism Now 1 in 100

http://news.yahoo.com/video/health-15749655/autism-on-the-rise-17201976

Copy and paste to see video if necessary. Autism is on the rise. (REALLY?) When my oldest son was born in 1984, only 1 in 10,000 had autism. Now it is 1 in 100.

Also, they are reporting that it is not just genetics, but environment. (REALLY?) In our extended family, there is no autism. Therefore, autism can not be purely a genetic mishap. In our immediate family, all four of our younger sons had disabilities related to autism. We stopped all shots with our youngest after 13 months. He had intense therapies and early intervention programs. We, as parents, chose what programs and therapies he'd follow. He has recovered and is in a mainstream classroom with no aide.

With our other children, we chose to take them off the prescription drugs after two years. We saw that we were only treating the symptoms and not the problems. It was only after following our hearts. doing our own research, and implementing our own programs that we starting to see glimpses of potential.

What will happen if the government takes over our health care and demands that our children receive vaccines or must attend certain programs? Autism will sky-rocket, and these children's potential will not be discovered.

I do want to point out that I am not anti-vaccine. I am pro-vaccine with a plan. Do one shot at a time and see if there is a side effect. Insist on thimerosal-free shots, which still has thimerosal in it, but in smaller quantities. There are other ideas I could list, but it is quite extensive.

How are these children going to function? How is our society going to welcome them? The impact on families is unfathomable. My heart cries.

Marriage and Autism: It Is About Acceptance

A few weeks ago good friends of ours announced that they were getting a divorce. This news hit me hard. We've known them for years, and they seemed happy... This prompted me to ask my husband about his thoughts about their divorce. "Marriage is about acceptance, not compromise," Mike simply stated. "Compromise leads to giving in; consequently, negative feelings begin. Resentment grows until someone breaks."

Hold that thought.

There are conflicting ideas about divorce and married couples dealing with autistic children. When our boys were first diagnosed eight years ago, I read an article on that topic. It seemed that the divorce rate was about 52% if there was one autistic child in the family. That rate rose to about 90% if there were two autistic children. I stopped reading before I saw the divorce rate for a family with three or more autistic children. I did not want to know. At that time we had three autistic boys.

Back to that thought.

About five months ago a situation presented itself that would change our boys' daily schedule. After much discussion, I could see advantages and disadvantages to this new situation. I totally respected my husband's insight. I did not completely agree with him, but I was willing to try.

Compromise or acceptance? Not sure yet.

That new situation is now over, but not without some weariness along the way. WHEW. Upon reflection, one of our autistic sons is thriving in a way that I could not imagine. Nick has connected socially with more people, and that is not bad for him. Had we kept to our original schedule, he would not have developed these skills as quickly. There were definitely negative aspects, but I think that these social skills will outweigh any negativity in the long run.

I have to admit that I had compromised. Could I have ever accepted that new situation? I don't know. At this point, I don't think it matters. What does matter is that Mike and I were able to respect each other in our differing opinions, recognize when we (really, when I) needed space, and listen when we needed to talk. Sometimes we missed cues about each other during the last five months. We're not perfect. However, we are in this together. We have accepted that, and we are looking forward to the new opportunities for the boys.

In a way, I can equate acceptance with love.

photo credit:apdk

Break Time

Everyone needs a break now and then from the demands of life. I find the beach to be the perfect place to veg. I took this picture about 20 years ago on a vacation. This is the Island of St. John in the Caribbean. This is the one place where any spirit can soar. Peace, tranquility, and beauty.

As a self-employed mom of special needs kids, home schooling, and wife, I need to escape once in a while. Self-preservation. This photo provides a great five-minute mini-vacation. Of course, I have the memories of a wonderful vacation with family and friends.

I hope you enjoy it.

Milk Substitutes and Coupon

What makes a good milk substitute? That depends on the point-of-view! For my kids it was taste. For me it was no casein. (Casein is the protein that is hard to digest in about half of the autistic population.) Obviously, I had to find a substitute that met both requirements. Cost was a consideration, but it was not a priority.

Be warned, if you're trying something new, spewing becomes a new sport in the kitchen. Have several bowls and towels on hand. Since I had four boys trying samples, those towels were used quickly. Also, do not stand in front any child who is trying samples. If it doesn't agree with the child, you do not want to be on the receiving end of that reflux. Bowl or no bowl. Icky.

I first asked dietitians what to look for, and they only suggested that the "milk" be fortified if possible as milk is the main source for calcium. Off to the store...

There are several options. The first one NOT to make is goat milk. It has the same problem as milk from a cow. Milk from any mammal is a no-no. I found this strange as I had nursed all of my kids with no problem. Evidently, this inability to digest casein is a "developmental" issue, like autism is a "developmental" disability.

We tried potato milk, rice milk, soy milk, and almond milk. Potato milk was acceptable, but it was extremely expensive. Rice milk was rejected unanimously by all four boys. Remember spewing? Soy milk was acceptable by one boy, and the rest of the kids didn't care for it. However, they kept the soy milk down.

The almond milk was the winner. All four boys liked it. The almond milk came in different flavors, and the chocolate was the favorite. The vanilla flavor was the second, and the original flavor was third.

I use all three types of milk for different needs. I use the original milk in cooking and baking. The boys love the vanilla flavored milk in cereal. The boys drink the chocolate, straight out of the container, if I'm not looking.

The cost varies from store to store. Typically, Trader Joe's and Sprouts are the cheapest. Regular grocery stores might carry them in the health food section, in the baking section, or elsewhere. I have not found any logic as to where grocery stores carry milk substitutes.

The almond milk comes in a box and is not necessarily in the "milk" section. Recently, some stores have started to carry the cold version, and they look like other milk containers. I usually have some of the "boxed" milk as they can last up to six months. They do not need to be refrigerated like "normal" milk. Each flavor also comes in an unsweetened version. I don't buy those because they will not be consumed. That is simply my boys' taste preferences. I think having those unsweetened options could help those kids who have to be on a low-sugar or no-sugar diet.

The only down side to almond milk is that it is made from almonds, so check allergies.

http://www.bluediamond.com/

The website has a $.50 coupon promotion. The brand name that we use is Almond Breeze.

I have not received any compensation for putting their website on my blog. This is solely my boys' preference that I'm sharing.

Milk = Opium

We were in a grocery line, and this lady mentioned that whatever her autistic son ate effected him. I agreed and told her about my nine-year-old, Cameron and milk.

Cam, like all my other sons, was born healthy and normal. He met his milestones on time. At a year old he was a walking and talking machine.

At 13 months he received the MMR shot. Within two days Cam had lost all motion and speech. He was a blob of tissue. It took him three weeks to start moving. He had to relearn how to sit, crawl, and walk. It took him three months before he started babbling. He had to relearn how to talk.

My world had been shattered, but agony was waiting around the corner.

Within the next several months Cam developed a liking for banging his head against things. My husband and I noticed that, if we tried to stop Cam, he would only scream and hit his head harder. He was self-abusive. We tried many tactics to get him to stop, to no avail.

Our walls had dents from him. By 18 months he preferred to hit his head on tile and concrete floors. Non-stop head banging. I put a bike helmet on his head for protection.

One day I found Cam jumping from his bed and slamming his head on the floor. I had to pin him down to stop him. After a few minutes, he looked at me, as if just noticing my arrival in the room. He exclaimed, "My head hurts." I had seen a change in him in those few minutes. He really didn't seem to register pain while he was hitting his head. Strange. Of course, we had talked with doctors, but no one could give us any answers.

I researched remedies for this behavior, and I discovered many theories. The easiest one was removing all milk from his diet. I was willing to try this, and it was something I could do NOW.

Cam stopped consuming milk. Within 48 hours, he had stopped all head-banging. It was actually quite funny to see Cam start his habit. He struck his head once, and as he was about to hit again, he'd stop and rub his head. It took a couple days for this habit to completely stop.

I told the pediatrician, and he actually listened to me. His response was, "It's hard to argue with those results."

Evidently, milk has a protein called casein. Cam can not digest it. When enough of these undigested proteins accumulate in his brain, it has an effect similar to an opiate. Consequently, if Cam drinks milk or ice cream, it's like giving him opium. No wonder he couldn't feel pain. Some autistic kids have this problem.

Not every body needs milk.

photo credit: Rich Anderson

The Holy Trinity Simplified

Most Catholics would agree that the Holy Trinity is difficult to understand. Not my youngest. A year ago, my then eight-year-old, was asking questions about it. Like a good home schooling mom, I saw opportunity knocking, and approached the topic.

After a lengthy discussion, Cam informed me that I made this lesson too hard. This is how I should have explained it:

"The Holy Trinity is simple. There are three persons in one God. The Old Testament says that God names himself as the God of Abraham, God of Isaac, and God of Jacob. There are three persons, Abraham, Isaac, and Jacob. There is one God for each person. God the Father for Abraham, God the Son for Isaac, and God the Holy Spirit for Jacob. They don't have to share 'their' God."

Today, Cam has a "better" understanding. Abraham, Isaac, and Jacob have to share God because there is only one God, not one for each. Obviously, Cam's understanding of the Holy Trinity is a work in progress, but then, so is mine.

photo credit: oddsock

How to Improve Your State of Mind

Instant mood shift: change thinking from "I have to..." to "I want to...".

It really helps a rough day get better.

Indy Kethdy

The Proposal

Today is our twentieth anniversary of our engagement party. Yes, we invited over 800 of our closest friends for this special event. NOT. Twenty years ago Mike asked me to marry him in front of these 800+ people at our employer's Christmas party. He pulled me on stage, got down on one knee, and proposed. Guts.

I had no idea that he had already asked my parents for my "hand in marriage". On the other hand, he did not know that I had already purchased a wedding dress two weeks prior, accompanied by my mom. (Thanks, Aunt Barb, for that inspirational story of your purchase before the proposal.)

My parents must have had a good laugh knowing that they were privy to the secrets that Mike and I had from each other. By the way, my parents did give their consent.

I did say yes. I would have said yes, even if I did not have that wedding dress. That was too funny.

So on the Feast Day of the Immaculate Conception for the last twenty years, it has been nice to be able to go to Mass and take a few, peaceful minutes to be thankful for the blessings given us.

After 15 Years, My Son Can Talk!

"Fowler."

Fifteen year old Ryan received an invitation to a Christmas party about two weeks ago. He asked if he could go, and after seeing who sent it, I responded, "Sure." He then gave me the invitation. "What am I suppose to do with this?" I inquired. He looked at me with the expression of "duh". I informed him that I was not going to call. "If you want to go, you call." I knew I had a few weeks before any action really had to be taken, so I was not worried about him missing the party.

The invitation positioned itself quite nicely in the middle of our fridge, beckoning me to make that call. I had to resist. Well, today WE had two VICTORIES! #1) I didn't give in, and #2) Ryan made the call, just out of the blue. He was well spoken, concise and clear. This was his first time responding... He didn't waste a word. Not that he ever does. The job was done. YEA!

I know that a fifteen-year-old making this phone call is an ordinary occurrence in many households. Not mine. This is the kid who wasn't verbal until he was five, and then it was only one or two-word phrases. Doctors thought he'd never talk. I was told to accept it, deal with it, but there was certainly NOTHING I could do. I remember I heard the word "institution". Keep in mind that these doctors were telling me this before Ryan was even diagnosed with autism.

Ryan had been born healthy, and he hit all those baby milestones early. At four months Ryan could grasp his dad's hands and pull himself from a sitting position to a standing position. He was walking at nine months. He was able to turn on the TV and put a video in the VCR by 12 months. At the same time he said his first word: flower; well, it was, "Fowler". He said it looking straight at a rose bush. Little did I know that Ryan would not utter that word for six more years, when he was seven.

Ryan learned "mom" and "dad" and anything that meant food. Or ball. He was all boy. A very normal boy. However, by the time he was two, I noticed he was not talking much. I mentioned it to the pediatrician who assured me that I was an overly-concerned mom. "Everyone develops at their own rate, but by the time they're five, they're all the same." The doc was wrong.

Ryan had 31 "words" by the time he was four. I still have the list. Over half of those "words" were utterances that we could decipher. The other half was torture for both parents and child. If we could not figure out what he wanted within 30 seconds or so, the tantrums began. Screaming. Running. Crying. All uncontrollable. If I were home alone, I didn't have much time before I joined the crying. How could I not know what he wanted? I'm his mom. I was a frustrated, frantic, anxious mom. Worst of all, I was helpless. I could not give my baby what he wanted or needed. Tragic. He was my third child; I certainly should have had enough experience. I didn't.

I remember being at the store one time, and Ryan "said" something to the clerk. He asked me what Ryan had said. I looked at the clerk blankly, and replied, "I heard what you heard." He looked at me in dismay. That look accused me. How could I not know? Why? Because I was this baby's mom. Yeah, no pressure.

Fast forward through years of tests, doctors, hearing tests, and the problem was "in my head", but a mom knows when something is wrong with her child. Looking back now, I think some doctors "diagnosed" him with something, just to shut me up. He'd been diagnosed with many different things, and through my research, I found that all those "things" combined could indicate autism. I knew this only because six months prior to Ryan's diagnosis, Ryan's younger brother was diagnosed with autism, and I was learning all about it. Autism. Ryan was finally diagnosed at age seven with autism. I grieved. At the same time that Ryan was diagnosed, his littlest brother was also diagnosed. I grieved for three boys. Autism had no cure.

Years of speech therapy loomed in Ryan's future. He had to learn how to make sounds, blend sounds, form words, all leading up to talking in phrases. Then sentences. Then... So now, at age 15, he is comfortable enough with words to be able to RSVP to a party. High five! This definitely is a success story! He's slowly conquering that autism. Or maybe there's a pretty girl with a flower...

The photo of the "fowler" belongs to photogirl7

Celebrate Successes Often

I just attended a wonderful annual event called the Birthday Party for Jesus. It’s an event that is sponsored by our home schooling group. Every year the kids get to show off their wonderful skills of whatever they wish to “give” to Jesus.

This year many children recited poems, sang songs, and played instruments. It definitely reminded me of The Little Drummer Boy, when he arrived at the feet of the Baby Jesus and had nothing of material worth to give. However, he showed his love for the Babe through his talent of music through the drum. These children gave of themselves; whether timid or bold, they shared a priceless treasure.

My youngest four sons participated, including my two autistic sons, Ryan and Nicholas, as they have done for the last three years. They all played the piano, with varying success, but they played. As a music teacher, I was so focused on “how well” they played that I wasn’t “mom” and simply enjoyed that they played. It took three different mothers to tell me how much they enjoyed my sons’ playing to make me realize how critical I can be rather than enjoying the simple pleasure of their talents.

These admirable ladies also remarked on how my autistic sons have progressed over the last three years. Mrs. L reminded me that Ryan didn’t even participate three years ago, although he was prepared. He simply would not do it. I totally forgot that. Mrs. S expressed how much progress Ryan has made in the last two years. She relayed that Ryan talks and joins in the activities with the other teens when he visits on Teen Night. It was Mrs. P who enlightened me that whatever I may know about the musical score, that to everyone else, it was music, and they enjoyed it. My sons, including the ones with autism, were successful.

I found myself absolutely surprised. How could I forget those small steps of success? The successes are so few, but monumental. I can only think that those successes are overshadowed by the daily turmoil of endless therapies and redundant lessons. Every parent of a special-needs child knows that every success celebrates the result of hard work, but it is quickly replaced with another goal. Being able to answer with one word is replaced by being able to answer with two words. Being a parent of kids, let alone autistic kids, offers endless tasks of teaching them everything they need to live, but we really have to celebrate those victories. And remember them.

Thanks to Mrs. L, Mrs. S, and Mrs. P. Thank you very much!

http://www.flickr.com/photos/ju-x/

Time to Smell the Roses

No matter what road you walk, always take time to smell the roses. It's definitely the details of life that add or subtract to joy.

Kjunstorm

How My Family Simplified Christmas Gifts

Five years ago I searched through every closet, corner, and crevice, looking for items I could give away to make room for the incoming treasures that Christmas might bring. After three months of purging, my home was that--a home. It was not full of antiquated toys, books, and clothes. We had space to live and breath! Suddenly, dusting was easy. WOW.

The thought of new items occupying this new space dampened my spirit. I did not want to have to repeat this headache of purging and sorting, but how could I not allow my children the fun of receiving gifts from their loving grandparents and relatives? My children would not understand, particularly my sons with autism. Tradition dictated that Christmas celebrations included Mass and presents!

At the same time that I faced this problem, I really wanted my whole family to go on a vacation. Time and money were always in short supply. After weeks of pondering these issues, I asked my husband what he thought of this solution: instead of receiving toys, why don't we ask the relatives who were inclined to give our sons gifts, that they give money towards a trip, like Disneyland. He liked the idea.

We approached the grandparents, and they were thrilled with the idea. No more guessing of what toys or games to purchase. No more questions of what size, color, or brand of clothing might the grandkids like. No more crowds at the malls. No more fighting for parking spaces. No more shipping charges and post office lines. Indeed, we were on to something.

On Christmas morning, there were small packages for everyone to open. Inside the boxes were tickets to Disneyland. The boys were absolutely astounded. We also received a dvd so the kids could actually see what Disneyland was like. They had no problem understanding that this was a huge vacation.

The following week we experienced great fun and apprehension, but I will cover that in a different post. The ultimate conclusion was a simplified Christmas, for both the givers and receivers, and a wonderful family vacation that we have since repeated five times annually.